D. Kilcher Update

Christmas 2008

2008-12-13T16:58:00.000-08:00

The year 2008 can best be described as a time of reflection on what it means to be family. As most of you know Doug was diagnosed with multiple myeloma (a blood cancer) October 18 of 2007. Our children, along with Carole’s Mom and brother, Jim, were confronted with the fact we might have to learn to live without him.

Kevin and Laura live in New York City with our grand-cat, Rusty.

Kristi and our new grand-puppy, Stella Mae, live in Seattle.

They’ve been very supportive with phone calls almost every day and trips home this past year. Kevin and Laura were just here the first of December and Kristi will be home for Christmas.

We have been touched by the fact that so many people have told us how they kept track of our battle with cancer through our blog. There were people of all persuasions of faith who prayed for us, many who do not know us personally. This has been a humbling experience for both of us. This is our Christmas ’08 update.

After a bone marrow transplant using his own stem cells, Doug is in remission now under the care of a local oncologist who follows his blood panel numbers each month. His hair is growing back (albeit not fast enough for him). He’s been back to work full time since August with deep gratitude to the men and women who added to their work load on his behalf.

As we read back in the blog to those early months—as well as to our experience during our 4 months in Dallas for the transplant—we look forward to 2009 with a new appreciation for blood. Some 40 plus blood transfusions kept Doug alive while waiting for his own body to again produce the life-giving cells.

We did not fight the enemy cancer alone this year. Some of our closest relatives and friends were confronted with cancer too. We celebrate with those who will be able to welcome in a new year; we mourn with those who have to make the major adjustment that comes from loss of the one they love.

We know that some of you who will read this message are fighting other battles: Some with other terminal illness, some with concern over job security, some already out of work and all of us watching the economy wondering just how 2009 will go down in the pages of history.

We don’t know what tomorrow will bring much less what is in store for us next year. It is only by the grace of the One willing to be born of a virgin, die on a cross, carry our sins to a tomb that we have hope of a life with new bodies free from disease and character flaws.

What we do know for sure is that we cannot take one another for granted. Neither can we take for granted the One whose birth day we remember this December.

~Doug and Carole

PS Our grand-dog grew up! Stella loves to sit in one of the car seats Kristi uses for here work with kids.

Our 40th

2008-09-08T13:09:00.000-07:00

I would be remiss to not mention another significant date in our journey. Today is our 40th anniversary! Yeah!!!

Perhaps having faced death smack in Doug's face this milestone is even more precious. We are launching our plans for our next 40 years together starting today :-)

~Carole

Graduation Day

2008-08-28T08:46:00.000-07:00

Before I turn the page on the calendar to September I wanted to note a couple of significant-to-us happenings:

August 20: Doug's central line was removed. It was done in Dallas at the speciality radiology lab. A physician's assistant and her nurse used local anesthetic. Doug was asked if he wanted to have it! He did not. He was told he needed to keep the dressing they put on for 24 hours then he can shower without my having to help dress the dressing.

We then drove around the corner to Dr. Collin's clinic to see our clinic "family". Doug wanted to thank them for their role in giving him back his life.

Tom, the valet parking manager, hugged both of us. Loretta, the building receptionist, hugged both of us too. She was thrilled to find out that Doug was in remission. She had been missing us. Because we had come every day for so many months we had become well acquainted. She asked if she could have our e-address to keep in touch. She is a single mom who we prayed through a difficult time in her life regarding her now freshman in high school daughter.

Upstairs we first met with Dale, our social worker. His office is just off the elevator on the same floor as the clinic. When we arrived at the clinic we noted some changes in the short time since we had been there. They now have grown so much they have had to move other doctors to another area of the building to allow Dr. Collin's clinic to expand.

We talked to Dr. Collins who happened to be at the desk when we walked in. We also were thrilled to see the head chemo nurse who had been vacationing in her home country. Her vacation started two days before we were released back to our Ft. Worth doctor so we had not had a chance to tell her good-bye. She was the one who came into Doug's room, said "Look at me", pointed her finger at him and declared "You WILL get well". That statement gave Doug the hope he needed to continue his fight. She is a very special lady.

Doug told me that going there again felt like it was his graduation!

August 22: In my last blog I indicated Doug would see our Ft. Worth doctor on Thursday. The appointment was on Friday. Doug had the nurses take off his dressing from the central line removal. Then he had the routine blood draw that happens 1/2 hour before he sees the doctor.

Doug's labs showed that he is still anemic but the lab numbers were higher than the last draw he had in Dallas. Dr. Mandell didn't recommend anything by way of blood for which we were both thankful. Doug is still having some pain in his spine. Dr. Mandell wants Doug to see a radiologist to talk about having a kyphoplasty. Myeloma has taken a toll on one particuliar area of Doug's spine.

The biggest news is that Doug was given permission to mow the lawn again as long as he listens to his body and doesn't push it too hard, pun not intended but since we don't own a riding lawnmower it was a very appropriate statement.

OK so I took the "rules" with us!!! Dr. Mandell reviewed them. When he handed them back to me he told us that he believes his patients in remission should enjoy life. He released me from being Doug's caregiver (gate-keeper is more like it no doubt!!!) and for me to concentrate on my own recovery.

After seeing Dr. Mandell we left directly for Dallas to attend the Southwestern Union Ministries Convention held over the weekend at the Anatole hotel, an incredible facility.

The word remission is such a welcome word. Hearing it again from a second doctor reinforced Doug's status in our minds. It still seems surreal but it is also not hard to get use too!!

~Carole

Transitions

2008-08-18T09:50:00.000-07:00

(Note: this is long)

You may recall that before Doug’s transplant we had the honor of participating in Burleson’s American Cancer Society’s Relay for Life. Both Doug and I were handed t-shirts at the registration table.

The logo on the front includes the American Cancer Society’s logo, this year’s Relay logo and, around the edges of a square, the words “Remember. Fight Back .Celebrate”. On the back of Doug’s purple shirt is the word SURVIVOR. On the back of my lime green shirt is the word CAREGIVER. Without wearing the shirts, those words of the back of our shirts have defined us.

We have been celebrating a miracle of Doug’s healing as the last few days will show.
August 4-7 Doug worked full days back at his job.
August 8-9 Doug rested.
August 10 Doug is chair of the Board of Education for the 31 Christian schools in the TX Conference. He asked me to attend the ribbon cutting ceremonies of a new Adventist-run high school in N. Dallas.
August 11-14 Doug, along with the other 3 administrators, hosted all employees and their families at the annual summer retreat held at Camp Allen in a marvelous setting. The camp is four hours South of Burleson. I went along to care for Doug….

As I write Doug is back for another full work week with the exception that he will have his NeoStar central line removed on Wednesday. Thursday he’ll finally get to see his primary Oncologist who has been on vacation.

In earlier posts I told how we were waiting for the “rocket” to go off when the cells were finally mature. I’ve seen the blast in Doug but there has been some fall-out in me.

When we left Dr. Collins Clinic we were given a booklet which outlines “no-no’s’ for all bone marrow transplant patients who used their own stem cells. It outlines dos and don’ts for 3-6 weeks after stem cell infusion as well as cautions for 6 weeks and after. As caregiver, I’ve felt it was my duty to enforce these “rules”. After all Doug has been dependent on me for more than a year and even obeyed MY rules!

After observing the impact on Doug from the outpouring of love that he received from others at the ribbon cutting and at the 11-14 retreat I knew that the realization of Doug’s goal, vision and mission to return to the people he serves was better than any medication he is taking. My selfish thoughts included but were not limited to—“Is he using the hand sanitizer or washing his hands after hugging and shaking hands?”

When he went back to work I packed his lunch. I did everything to make his breakfast and evening meals nutritious, attractive and appealing. Still he had very little appetite. At the retreat however I also observed the amount of food he consumed and couldn’t believe my eyes! Once we knew he was lactose intolerant things were going well at home but NOTHING like the amount of food he consumed at meal times at the camp.

Eventually I realized that I was no longer needed as caregiver in the same way as I had been for so long. I was in a major transition. My role was changing without my permission! It is like the day a parent realizes their children are capable of doing their own laundry, driving to their own appointments, living on their own, etc. Mind you my head knew Doug’s being more independent of me was a good thing for both of us. I just wasn’t prepared for it happening like it did or as soon as it did.

At the retreat it didn’t take me long to realize it was too early for me to be around people—even well-meaning people who asked me how I was doing. I would not have gone with Doug to the retreat had I known how self-sufficient he had become. It was too early for me. I also was under the care of my physician because of medication “issues” we were trying to sort out. Was it long-term stress causing my "issues" or something different with my meds?

When a well meaning individual at the retreat who wondered if Doug was doing too much told me about their friend who died not from a transplant but from pneumonia after the transplant that was the last straw. I needed to be alone. I couldn’t stand the cooped up feeling I had in our motel room either. It reminded me too much of being enclosed in an ER or hospital room or our small apartment. I knew I needed to be out in nature in spite of the heat and humidity.

I walked and walked. The camp has 2 lakes. One has a cross that one morning made a perfect mirror image on the surface of the lake. I saw a deer family grazing in the meadow. When a truck went buy they took off—the parents in one direction and the baby the opposite way. When the baby sensed its parents weren’t following it made a quick course correction to follow them.

Another time I saw one of the housekeepers leading her team to the motel area in a gentle rain. She had a large umbrella covering her and the new towels and wash cloths she was pushing in a cart towards the motel rooms. A pastor from our group was outside in the rain talking on his cell phone. Without hesitation the housekeeper stopped and handed the pastor her umbrella. Time and time again I observed the helpful but self less nature of the staff serving us at Camp Allen.

Out in nature I was reminded that I was coming off the stress of trying to help Doug so I wouldn’t loose my best friend of 40 years. I also knew I was not my normal self. I reasoned that I had a choice to feel sorry for myself or to turn Doug over to God’s will for Doug’s life as well as for Him to do new work in me.

I was sitting on a bench in the camp’s out-door meditation area when I remembered part of a poem I had written in college at a pine forest in Michigan. I had probably broken up with a boyfriend or was feeling sorry for myself because I didn’t have one! Regardless the first verse came back to me in the meditation area of the piney woods in Texas.

I know a cathedral
A marvelous place
There I behold
The Master’s face
Pine needles cushion
The place where I walk
Alone
With Him I talk

In that special place I made a commitment to allow Doug to live the days God gives him the way Doug wants to live them which may be contrary to the way I think Doug should be living. I know in the Master’s hands Doug is far better off than with a nagging caregiver. This transition, giving up my care-giver role (control ?) over Doug and following through with my commitment is not going to be easy for me. That is why my goal is now a written commitment so that I can return to this blog to re-read it as needed.

God has been so good to give us more years together. I’ll keep you posted from time to time but as stated before mostly this blog is a written log 1) to help us recall important dates and events during the miracle of healing and 2) to have a place to give God in writing the glory that is due Him.

In nature I was reminded that the Master is the ultimate Caregiver of both Doug and me.
~Carole

He Did It

2008-08-04T12:33:00.000-07:00

He made the goal. He is at work today!!!!

~Carole
P.S. That doesn't mean to stop praying. (I could use prayer for healing too as my body now lets down a bit.) Doug still has weight to gain and needs continued good health to fight fatigue. Praises are definitely in order.

To God be the glory. Great things He has done.

Change

2008-08-02T11:43:00.000-07:00

Wednesday, July 30th, was our first appointment with our nearer-home oncologist. More accurately it was an appointment with the doctor covering for our nearer-home oncologist who is on vacation. Doug won’t be able see Dr. Mandell until August 22.

I had fretted for a few days about this change. I had unanswered questions regarding a medication that I had been told needed to be started “in the future when Doug’s cells had recovered more”. I told a girlfriend I didn’t know why I was so worked up about a change since God has been with us each step of the way. She pointed out that I am human.

A major change was that our nearer-home oncologist use to have office hours at the groups’ clinic here in Burleson and now he only sees patients in their Fort Worth clinic. We had seen him in Ft. Worth just once prior to his transferring us to Dallas.

When we arrived the central receptionist sent us to the lab. When the receptionist at the lab learned Doug had a NeoStar central line they told him they don’t draw blood from ports in the lab and sent upstairs to the clinic’s chemo nurses.

That was a big change because Doug had never been treated upstairs before. The chemo nurse was nice but instead of having Doug initial one of the vials she just took them out of the room after the draw.

The dressing change was different as well. Two student nurses from the local college were observing the chemo nurse. The chemo nurse changing the dressing told Doug they don’t purchase what we now know to be a very expensive pad that is a round cushion between the central line into the heart and his skin. Not having that little piece was a big change. Because of that difference Doug is suppose to have the dressing changed two times per week instead of just one as we are use to.

The physician covering for our oncologist was a very kind man. He had retired 1 ½ year prior and only covers for oncologists on vacation. He gave us some interesting information we had not known before. Hair starts growing back in patients as soon as the chemo is out of the system but new growth doesn’t surface right away. It may take 3 months to show because the cell at the follicle level is a dividing cell damaged by the chemo.

The physician was concerned not about Doug’s weight loss as much as his protein intake and strength. Myeloma is a protein disease in that it prevents any intake of protein from being absorbed in the body. Protein passes out in urine which is why kidney function is also impacted and why the M-spike is so important for this type of cancer. When he read the report from the blood draw that day Doug was very anemic. He ordered 2 units of blood to be given the next day.

As we were checking out we learned that they don’t do transfusions at the clinic like we were accustomed to at our Dallas clinic. They gave us a choice of hospitals to call the order into. Doug said to do it to the hospital closest to our home. Neither of us considered that process in advance. It was a change big time from Doug’s previous blood transfusions at the Dallas clinic.

We had to go directly to the hospital’s lab so they could type and cross-match Doug’s blood so they could order the blood from the blood bank and have it ready the next day.

The next day we had to go through all the general admitting processes. Doug was put in a private room in a bed and then we experienced even more change.

The first nurse caring for Doug had never seen a NeoStar port. She brought in the supervisor who said they needed to call a doctor before they could touch it and weren't sure their tubing would fit. Before a doctor arrived another nurse came and to “look at it”.

By this time Doug and I were very nervous and ready to go back to our “family” in Dallas. But the blood was already there and we couldn’t take it with us. In the end Doug decided to be transfused in his vein which was another change. The process used to verify the donor blood to Doug's ID was also different from what we were use to.

By this time I am going to admit to the world I was a basket case. I’m not proud of it but it helps to admit it to realize that God isn’t finished with me yet. I stayed with Doug until the nurse started the blood and brought him a lunch tray. Then I left, went to eat at the cafeteria, came home, went to bed and cried it out—something a female has to do from time to time!!!

If you are in the medical field know that your patients and their families attach to you. They get use to your routine with them. While every physician’s office and clinic does things differently when a patient is being transferred to you from one location to another recognize that change is not easy for them, especially if a terminal illness is part of the reason for the transfer OR as in our case when the specialization at one clinic is no longer needed but follow-up at another will be for a life time.

The rest of the story is that Doug walked out of the hospital. Friday, August 1st, he felt wonderful. He drove for the first time in months, we ran errands (in 104 heat outside) and he did a few small chores around the house. I see small hairs growing on his head and he has to shave now. Monday he plans to go into his office “for awhile”, whatever that means. Being back to work by the first Monday in August has been a goal he has had for some time now.

Doug's immune system is still compromised. I won’t be there with him at work to remind him to sanitize his hands after every handshake or be sure he eats his noon meal that I’ll send along. I’ll do my best to change my role as caregiver and coach. That will be a BIG change for me. What I do know is Who I have to depend on every moment to make this change happen smoothly-- for Doug’s sake.

~Carole

Surprise Announcement

2008-07-24T16:51:00.000-07:00

Yesterday, July 23, Doug had an appointment in Dallas at the clinic. We were scheduled to meet with Dr. Collins. He asked Doug how he was feeling and if he had any questions. We had written down three questions during the week.

After Dr. Collins was satisfied that we were satisfied he calmly said he'd be making a call to our referring doctor. The transplant was, in his opinion, a success--even if it took longer than he/we had anticipated. He told us to make an appointment with Dr. Mandell next week. He is the hematologist/oncologist in Fort Worth who had referred us to UTSWMC.

Doug and I both looked at one another and Doug said, "Does that mean I'm done here?"

Dr. Collins said he had not seen the numbers from the labs drawn an hour before but after today we would be followed by Dr. Mandell. Doug thanked Dr. Collins, his staff, and God for giving him back his life. He said, "I know I wouldn't be here today otherwise."

Dr. Collins is a humble man and said that he was pleased Doug was pleased. He noted that research in Myeloma is rapid and one day they hope to be able to give a pill and not have to use the toxic chemo.

When the labs came back Dr. Collins reviewed them and felt Doug needed whole blood. His red counts, hemoglobin, hematocrit were the only counts that were below normal.

Doug will still have to have his Neo Star taken out sometime but that will be done outpatient by a surgeon in Dallas. With Doug's release our mileage (think price at the pump) has been cut from approx. 100 miles round trip to the Dallas clinic to approx. 24 miles round trip to the Ft. Worth clinic. This is an added plus as we begin the next phase of living with cancer that for now has been abated. PTL!

I'll keep you posted from time-to-time because I journal this experience for us more than for you. It is interesting how much one forgets--especially the bad parts of our experience. That is Mercy with a capitol M.

~Carole

Home

2008-07-20T18:24:00.000-07:00

July 20th is a milestone for Doug. We are home and will sleep in our own bed for the first time in 2 1/2 months.

His treatment is not over, he is suffering indescribable fatigue, he has lost a lot of weight and his immune system is still compromised however we are both so glad to be home those things seem minor.

We covet your continued prayer support as we begin the next chapter of this journey.

~Carole

This Week's Highlights

2008-07-19T13:14:00.000-07:00

There have been a few highlights this week regarding Doug’s progress. His beard is growing back. Not having to shave has been one of the side benefits of chemo (possibly the only other than ridding him of cancer).

Doug didn’t notice the “peach fuzz” on his face as fast as I did when I kissed him! He has been out of the habit of shaving now for several months. If hair on the chinny-chin-chin is growing can fuzz on his head be far behind?

He didn’t loose every hair on his head nor did he choose to shave his head. His challenge now will be to combine his “comb over” with his new hair growth which will no doubt be of an entirely different texture than before cancer. Other cancer survivors have told us that their hair not only came in at different texture but also a different color. I’ll keep you posted as to whether he becomes a blonde, brunette, or red head!

The last four days he has wanted to walk on the treadmill. Now to some of you this would be no big deal. For one who has been constantly in bed (and still feels better down than upright) this is a big deal. It provides him an even surface and something besides me to hang onto which I am sure makes him feel more independent.

On Friday Angela, the Physician’s Assistant, said that the numbers are exactly as they expect them to be and even hinted that they may take his NeoStar catheter out of his heart chamber in the next couple of weeks. That will make his showers much more convenient as now he has to have me help cover (think water proof) his dressing. We use Press and Seal™ the same product that I use in the kitchen to cover things without lids. Then I double seal the area with waterproof tape all the way around the dressing. Nurses change the sterile dressing once per week.

Finally after receiving IV fluids Friday Doug was given the longest time between appointments to the clinic. We’ve graduated from going every day at 8:30 to three times a week to two times a week. At his next appoint it will be once a week. They keep weaning him away from them back to his regular oncologist. This allows us to put our lives at home into our new normal.

Angela also told us something interesting that we had not heard before. We were talking about Doug’s being a “late adopter” wherein the stem cells didn’t take off as rapidly as is normally seen nor did his stem cells start making his own blood as rapidly as WE thought that they should be making it. Angela said, “We know that it takes 14 days from when the stem cells are infused until they start producing any blood at all. There is nothing science can do about speeding that up because that is how God made us.”

We have been so fortunate to be surrounded by fellow Christians in this hospital and at the clinic as well as to have so many Christians of varing persuasions of faith praying for both of us. You are the reason we are feeling so humbled and blessed.

~Carole

Good News

2008-07-10T11:15:00.000-07:00

Usually when I don’t blog it means that there is nothing to blog about! However on Tuesday we had some real good news I wanted to share with all of you. When I had time to blog it became obvious to me that my computer had acquired some form of “cancer”. It first started out as a scare tactic for me to purchase “AntiSpywareMaster” which I tried to ignore. Since this is Doug’s work computer I called tech support at his office. Even with a pop up blocker on the messages kept coming. Long story short someone from the office brought another computer and took the sick one back for evaluation.

Besides keeping in touch with the outer world we use the computer everyday to go online to a password protected site where we can view and track Doug’s medical records, check to see when our next appointment is, request medication refills and even send messages to the doctor or his staff. I am grateful to Doug’s staff at his office for not making me panic too long!

The first good news Tuesday was regarding his CBC and 24 hour urine collection report. While we get access to all of that daily it helps to understand it from a historical perspective. When first diagnosed the M-Spike that shows the level of protein in Doug’s urine was some of the highest the Fort Worth oncologist had seen.

While the numbers are all I can show you I will have to have someone else explain the last symbol I don’t know how to compute much less grasp metric symbols totally.

At diagnosis the urine protein was 16,208 mg/24 (and above the 4 a small degree symbol).
Before transplant the number was 574 mg/24 small degree symbol.
Tuesday we were given the lab report with no apparent M-spike. (Praise the Lord)

While they cannot be certain, this indicates that for Doug’s particular brand of cancer the majority of (if not all) myeloma cancer cells were eliminated from Doug’s body. When we read back to lab reports from when he was first diagnosed and see the number of tumors in his blood/bone marrow and M-Spike compared to Tuesday we are jumping for joy—well not jumping but you get the picture.

Now we are working on nutrition and keeping food on Doug’s tummy—bland with lots of calories and protein. (I’ve kept lots of food on my tummy while none has stuck to Doug’s yet!!!) Because he has been bed-ridden for so long we are also working on exercises. He is weak and will feel fatigue for some time. He is battling low blood pressure. Somehow these challenges don’t seem as difficult now with the good report.

We still have to be cautious of bacteria etc but we are of good courage chomping at the bit to get use to our “new normal” around the house and at his workplace. As I write friends and family are also coping with cancer, high blood pressure, MS and Lou Garigs (sp) disease. All but one are younger than Doug.

Last night I attended praise and worship service at the church closest to us. I have passed it many times. Its name attracted my attention: The Cathedral of Hope. Its mission statement says it well: “We are a church that believes in relentless compassion, radical inclusion and extravagant grace.” There were about 200 people there Wed. with more than 1,000 in two services on Sunday. I knew all the songs and it was good to sing them again as doing so while watching a church worship on TV or streaming version online on our computer doesn’t have the same impact on me as worshiping in person with others. The one unique feature in the rack in front of the pew was a small box of tissue. Music touches my soul so I was glad they were there.

It was good to be among Christians praising God and praying for peace for those on like uncertain journeys.

~Carole

Blood

2008-07-02T17:04:00.000-07:00

The rocket metaphor I have used in the past recently took on new meaning.

Thursday, June 26, Kevin flew in from New York. At clinic that day Doug’s physician assistant announced that the next day, June 27, Doug’s stem cells would get a boost. She said Dr. Collins had ordered another bag of Doug’s stem cells from the blood bank. This meant that we'd have to spend all Friday at the clinic.

As you'll recall blood cells are made in the marrow, the spongy center inside bones. Blood cells begin as stem cells. Stem cells become red cells (carry oxegen around the body), white cells (fight infection) and platelets (prevent bleeding or help stop bleeding after an injury) in the marrow.

Because 2 hours of fluids were required prior to stem cell infusion and another 2 hours after the infusion over the weekend Doug’s body revolted—not hurting any of the new stem cells but making for a very long (and stressful) weekend for all of us.

On Sunday I went to the clinic to see if I could bring Doug in for evaluation even though we did not have an appointment. Doug had "stumbled" in the night on his way back from the bathroom and I was more than a little concerned to have to wait for our appointment on Monday. This is not a walk-in clinic on weekends but they were kind enough to have me bring him. As it turned out Doug had very low blood pressure.

The Sunday physician’s assistant is different from the one we see regularly but we know him from our stay in the hospital. Jeff explained to us that Doug’s stem cells are not making his own blood in large enough quantity yet. That is why the boost of the addional stem cells. It can take up to three weeks before the new cells develop enough for Doug to feel the boost. He assured us it will happen.

The team sees patients’ response to the transplant as a bell curve. Doug just happens to be one of the slower-to-respond ones which, according to Dr. Collins, put Doug at the 15th percentile on the slower-to-recover side of the bell curve. That doesn’t mean the stem cells haven’t grafted. They have. It just means that the rocket sat on the launch pad longer than expected and he is not producing his own blood in sufficient volume yet. In our conference with Dr. Collins today he said he is not concerned but he wants to hear from Doug what Doug is experiencing.

I think a better metaphor for us from now on is a roller coaster. We were down and our breath was taken away but today we are heading back up looking forward. Doug asked Dr. Collins if he thought he (Doug) would be able to go back to work by August 1st even if it were only for one hour. Dr. Collins said he would expect that Doug would be able to do that if he kept good boundaries and listened to his body.

Today Doug had another blood transfusion. I wish I had kept track of the number of blood transfusions Doug has received. I did not. Now there have been so many I couldn’t even guess. When I think of all the people that we will never know that are literally keeping Doug alive by simply saying “yes” when asked if they are willing to give blood I am in awe. Watching how it all happens on the receiving end gives new meaning to the importance of being a blood doner. We can become numb to announcements of opportunities in our community to give.

Kevin left Monday morning. The last time he was here was at Christmas time. Doug had pneumonia and was hospitalized. Doug promised Kevin that the next time Kevin comes for a visit his Dad will be upright.
~Carole

Child Care

2008-06-26T14:56:00.000-07:00

This morning our son, Kevin, flew in from New York. He will be staying with us for a few days.

Doug was standing in the doorway awaiting his hug when Kevin drove up. Then they sat together and talked for a good while. Doug is not prone to sit up for this amount of time yet so I reason that his child's care made the difference.
~Carole

Patient

2008-06-22T16:30:00.000-07:00

There really is nothing to report this week other than Doug is still in bed. He gets up to go to the bathroom and to the clinic each morning for platelets or units of whole blood but thus far that uses up all his energy. The following is my candid observation.

Doug is a patient with patience for if he were impatient he might become an inpatient.

Patient—(noun) somebody who receives medical treatment.
Patience—the ability to endure waiting, delay, or provocation without becoming annoyed or upset, or to persevere calmly when faced with difficulties.
Impatient—annoyed at being kept waiting or by being delayed.
Inpatient—somebody receiving medical treatment that requires a hospital stay.
~Encarta Dictionary (online)

~Carole

Back to the Clinic

2008-06-17T14:43:00.000-07:00

He is out of the hospital as of a few minutes ago and I'm cooking up a storm! Too bad his stomach shrunk and mine hasn't!!!!
~Carole

Soft Food

2008-06-15T18:10:00.000-07:00

Today marks the 12th day of hospitalization for Doug. The rocket has not taken off yet.

Doug did ask the doctor if he could switch from a liquid diet and have soft food today. That is progress!

The doctor changed the order this morning but the noon tray was the same-o-same-o-liquid "diet". The gal from the kitchen said they'd check the order and bring up another tray.

I had to come home to do some laundry. When I returned I found there had been no second tray. As part of my job description as his caregiver I made sure the nursing staff understood his desire for soft food this evening!!!

Tonight they brought in his dinner tray: a breaded pork chop, mashed sweet potato, rings of yellow squash, a white roll and chocolate cake. Sooooooooo I marched back to make another point. When he was admitted to the hospital they asked if he had any dietary needs. At that time he noted he was a vegetarian and alergic to peanuts.

They apologized for the oversight and said they'd bring up another tray of soft food as soon as the rest of the trays were distributed.

The next tray had a soup bowl size portion of white rice, a baked potato, a side dish of cottage cheese and oh, yes, a "health shake".

I can't wait to get him back home to feed him colorful soft food!
~Carole

Hospital Update

2008-06-11T13:00:00.000-07:00

Today I received 3 telephone calls and if I recall correctly 6 e-mail messages asking how we are doing. I guess that means it is time to take a break and blog for a minute or two with you. I haven't written because 1) the past seven days Doug has been in the hospital where one day blends into another and 2) I've been tired by the time I get home and leave as soon as I can in the morning.

When I asked Doug what he wanted me to share with you he told me to tell you that he is amazed at the body's ability to take a hit (in this case from toxic chemo) and over time renew itself. He said to tell you he's glad to be bubbling up from rock bottom. While he hasn't surfaced just yet, he is bobbing up, which is the correct direction. The counts have turned around and are increasing each day. Either tomorrow or the next the doctors predict that his blood counts will "sky rocket" and Doug will be able to tell the doctors himself that he felt the change within.

Doug's courage has always been good throughout this ordeal. He gives credit to the Lord for His power and strength getting him to where he is today. He is appreciative of everything I do for him and wants to make sure I'm taking care of myself. He wanted me to be sure to thank you for your continued prayers, concern and support for both of us.

The medical team is amazing. They give us confidence that everything is as they expect it Although rate of increase in Doug's white counts might be a bit slower than they'd like them to be it is not uncommon and is seen by them as "normal". I don't know what that word means but we like the sound of normal!

Currently there are 8 other stem cell transplant patients at various stages on this specialized ward. This part of the hospital also caters to those individuals that come just for a series of chemo treatments to treat their blood cancers. The interesting thing to me is that I never bump into another family member. Isolation is just that.

This has definitely been the most intense time for us in the past 9 months. It is probably a good thing that when Doug was feeling so good one of the team would say, "Now don't be surprised if you have to go into the hospital at some point" rather than saying to us "Plan on going to the hospital before this is over"!! They would also tell us that everybody reacts differently to the after effects of the "sledge hammer" chemo. We know for sure he is where he needs to be.

The food tray looks the same morning, noon and night as he is on a liquid diet. It is the subconscious things we take for granted everyday that I hope we never forget from this experience. No bodily function is small at all.

If you can swallow right now you are a person most blessed.
~Carole

June 4

2008-06-04T18:08:00.000-07:00

We tried to beat the odds but didn't quite make it. I had to leave Doug in the hospital tonight. It's a good thing because they will be able to manage pain in his esophagus better than I can. His counts are at their lowest and he was finding it more and more difficult to swallow his medications in tablet form. He also wasn't eating.

We had been warned that this might happen as it is "normal". The good cells were killed off with the cancer cells and are not able to regenerate until the white counts come up. The next couple of days it will be best for the team to treat him 24 hours/day to keep him as comfortable as possible rather than the 4 hours/day we've been in the clinic. Then the counts will jump back up and those tissues will heal rapidly--or so they say. Since everything else they've told us has come true I believe them on this one also.

~Carole

May 30-June 3

2008-06-03T07:21:00.000-07:00

The last few days have been both good and not so good for Doug. We have been told it would be this way as his system adjusts/reacts to all it is being given to beat the cancer and engraft the stem cells.

On the good days Doug has been sure he would beat the odds and not have any more nausea. Not so. It comes in waves. We do have medication to keep it in check but sometimes it requires more fluids which we get in our daily clinic visits.

Yesterday was Doug's birthday. I gave him a card with a roller coaster on the front--and a pill case with S M T W TH F S on it for laughs. He received Happy Birthday baloons from his administrative assistants and recieved bags of sodium chloride, ondansetron and dexamethazone through his central line from the clinic!!!!

We have been asked if the stem cells were treated to know that no tumor cells were in the two bags Doug received. The PA we spoke to about this said that the cells go through the FLOW process at the blood bank and he thinks they are radiated as well. It is a question we have asked before but we want to ask the doctor whom we have not seen since the infusion. Physician's Assistants (PA) and chemo nurses are who we deal with daily.

To date Doug has remained an out-patient and we are very thankful for that. They warn us that the next couple of days could still be Doug's low points as indicated in his daily blood panel where the numbers are still "too high" to say he has hit bottom. I don't think they like to say exactly what he can expect because every body reacts differently.

The main thing that would send him to the hospital will be a fever. There is probably less bacteria to be concerned about out of the hospital than in it! What they do tell us might occur often does come true. We are amazed at the science behind all of this.

I was talking with a post doc man who is doing a neuroscience fellowship at the medical center here. His interest is in stem cells as it impacts Parkinson's disease. He told me that they are now using skin cells (at the follicle level) and multiplying them into stem cells in the laboratory (like they do umbilical cord stem cells) to make a fluid they can inject into the skull to the area impacted. The stem cells then regenerate the area that has been affected. He is Chinese and returning to China to partner with people doing this in his home country. (Now there is room for more information in this area to be sure as we had a very limited cross-cultural communication on the subject but that is what I took away from it.)

On Sunday I was discussing this with the PA who affirmed the fact and told me that there is also someone in the hospital right now undergoing a stem cell transplant procedure they are using to combat her multiple sclerosis. Perhaps it is the "learner" in me but I want to read up more on these new treatments. The teacher/student in me wishes I could tour some of the labs and see for myself. On the other hand there are probably plenty of mice and rats I'd have to overlook.

Perhaps you saw the television piece when the three powerful evening news anchors from ABC,NBC, CBS came together. They were promoting something that will take place around the world and on each network September 5th. You can go to the website http://www.standup2cancer.org/to see for yourself.

The point they were making in their broadcast is that we need to find better ways for those doing research in a particular cancer to collaborate, funds to do so being one of many limiting factors. The goal is to eliminate this horrific disease that is no respecter of age, gender, or culture. Because Doug's future, as so many others, now depends on additional research I, for one, will take more interest. If you, a reader, struggles with another terminal disease I do not wish to diminish that fact. I'm just sharing what is on my heart and wish for the day that will end all suffering.

~Carole

May 29

2008-05-30T19:52:00.000-07:00

I wanted to share some pictures with you that I took during Doug's stem cell infusion. I took more pictures than my blog allows for one posting. I hope pictures speak louder than my words to describe this awesome event in our family's life.

The medical technologist came to the clinic with the cells in a caldren of refrigerated nitrogen. The cells collected were spun in the blood bank's lab and 25 cc's of stem cells were put into each of two bags. Each bag also contained 25 cc of DMSO, a preservative, which does not harm the patient but leaches out of their bodies producing an oder which to me smelled like cream corn that you get in a can.

Since the day of collection Doug's cells have been kept frozen at -196 degrees celcius. The med tech, Natalie. who brought the cells works for the Carter Blood Bank. They will store 1/2 of the cells collected from Doug should Doug ever have need for them in the future.

Natalie's undergraduate degree is in clinical lab science. She is certified by the American Society of Clinical Pathology to do this specialized work. What we found interesting is that she is a cancer survivor who has been cancer-free for 14 years. I'd guess her to be in her early 30's.

The two chemo nurses and Natalie trippled checked the label on the packaging to be sure the stem cells were Doug's and going back into the correct patient. Natalie read to Debbie then Debbie to Fatima.

In the picture above you can see that each bag of cells is contained in a protective metal case. They come frozen flat. Then the bag of cells is placed in a machine that Natlie brings with her called (in laypeople terms) " the warming bath". When the stem cells come up to body temperature the bag of cells is ready for infusion. The team works together rapidly at that point.

The "blessing" of the cells took place (see the other May 29 posting). The first bag was hung on the pole with the other hydrading fluids that Doug received prior to the arrival of the cells and were connected to Doug's central line. I called it his new life link. Meanwhile Natalie is warming the second bag of cells.

One of the chemo nurses monitored Doug's vitals the entire time while the other nurse monitored the rate of flow of the cells into Doug's central line. Because Doug's collection was so successful with so many stem sells per micro lieter he only had two bags of stem cells whereas others frequently have more than two even as many as eight bags.

Each bag took 20 minutes to drain so that in 40 minutes Doug's happy cells were using their God-given instinct to find their way back into Doug's bone marrow. Natalie explained that the cells have receptors on the outside and when returned know right where to go. They set up shop in the bone marrow and within a couple of days they start dividing. Meanwhile Doug will feel weak and fatigured.

Doug was comfortable during the entire process and said he felt nothing. I can't help but tell you I have a picture of him talking on his cell phone to a pastor who called him just before the action started. When I heard Doug say "How can I be of help to you?" I wondered if the pastor had any idea what Doug looked like from where I was sitting.

When the infusion was complete and Doug was unhooked he stood up and walked with me to the car and rode with me to the pharmacy to pick up a perscription. I can't find words to describe what that felt like to both of us.

We go to the clinic every day now. We have to be real careful of infection/fever until his immune system kicks back in. Friday and Saturday he will have blood transfusions. Sunday the injections of neupogen will begin again to assist in the growth of new cells. This time, however, the dosage will be less. We are grateful that during this entire process he was able to be a clinic outpatient.

~Carole

PS Of interest to us (and no one else) is that May 29 is Dr. Collins' birthday so Dr. "V" covered for him. She is a brilliant physician whose last name is longer than most can pernounce so goes by Dr. V. She has covered for Dr. Collins and seen Doug before.

May 29 Blessing

2008-05-29T18:34:00.000-07:00

Today was the day Doug's stem cells were infused back into his body. In a ceremony as emotional for us as our wedding day, the following blessing of Doug's stem cells was prepared by Rev. Gina L. Biddle, BS, MA, BCC from the Chaplain Services Department
UTSouthwestern Medical Center. Dale, our social worker, chemo nurses Debbie and Fatima, medical technologist Natalie from the blood bank and Pastor Gina shared this special moment with us. As the first of two stem cell bags was hung for infusion back into Doug's body we each had a copy and responded in kind to the following:

Blessing of the Gift of Cells

for

Rev. Doug Kilcher

CHAPLAIN: We come today to celebrate a new beginning.

Any new beginning stirs up many feelings within us.

ALL: We feel afraid and anxious about the unknown, but at the same time we feel excited and hopeful as we look forward to new possibilities.

CHAPLAIN: The cells we bless today, Doug, offer new possibilities for your healing. We give thanks to Carole, for her gift of love and companionship to Doug as he takes this journey of life. These cells from your own body are an amazing gift from the Creator of all life.

ALL: Thank you, Great Creator, for this gift of life and for this transplant as a means of using this gift of healing.

CHAPLAIN: Loving Creator, our understanding Friend, we come bringing all our fears and hopes to you as we bless these cells for Doug's healing.

DOUG: Today I receive these cells with profound gratitude and hope.

CAREGIVERS: Doug, may you feel our hope and love supporting you, bringing you renewed energy and hope.

CHAPLAIN: May Divine Love and Wisom "be healing to your flesh and marrow to your bones" (Proverbs 3:8). God of all love and grace and healing, bless these cells for Doug's healing according to his deepest needs of body, mind, and spirit. May Doug feel your power flowing through every cell, bringing a new day of health and joy and creative energy.

ALL: Loving Creator and Friend, come with us now on our journey into the new. Lead us forward with your vision of abundant life, and help us to continue to become all you created us to be in your divine image, now and forever. In the Name of Jesus Christ.

Amen.

May 22-26 &27

2008-05-27T18:31:00.000-07:00

May 22-26 & 27

I didn’t post anything from the 22nd through the 26th because there was nothing unusual to share. It was a time of rest for Doug as the team waited for his white count to drop. On Memorial Day we did drive to a farmers market. Whoopee!

Today, May 27, is a day we’ve been both excited about and dreading. We've been excited because today is the beginning of the end of this particular chapter in our lives; dreading because the words heavy dose of chemotherapy (as compared to a standard dose) made our imaginations go back over all the after math of every other IV chemo Doug has endured previously. Neither of us slept well last night.

The chemo nurse caring for Doug today is one of our favorites. We were in a private room with a window looking out on what turned out to be a stormy day. A large bag of general fluids and anti-nausea meds were started at 9 a.m. At 11:30 the nurse brought in the chemo bag, hooked the small bag onto the pole, and connected it into Doug’s line. That bag’s drip was done in 30 minutes. He felt nothing different while it was going in. Two hours later he threw up once, he received an additional injection of anti-nausea medicine in his line and we waited until the large bag’s last drip finished. He walked out of the clinic with me at 3:00 p.m.

I was surprised that after he rested for about an hour he said he was hungry. We are doing small, frequent snacks. With little strength and vitality he is spending his time in bed but so far no complications.

We have been warned that today would be an AOK day. As his blood counts drop during the next 7-10 days he will feel less well. As his counts recover he'll build back up. We go to the clinic every day now so it is their plan to treat Doug as an outpatient. I am his private duty night nurse!

There is a chance he’ll have to spend a few days in the hospital when his counts are the lowest. After the clinic is closed I have a phone number to call anytime I have a concern. The doctor on call will tell me what I need to do. If it is best that he be admitted to the hospital, this time I will be able to take him directly to the hospital without going through the emergency room. That is huge for both of us!

Tomorrow we check into the clinic for labs and fluids. Thursday is the day Doug's stem cells will be returned.

Doug said today that he can see the checkered flag of remission in the distance. Thanks to all of you who have stayed in the bleachers to cheer for him throughout this race.

~Carole

May 19-21

2008-05-21T09:42:00.000-07:00

I promised to get back with you about the unit of measure which followed Doug’s 412 as computed by the blood bank’s C34 test. The answer is micro liters. As I understand it, that is a lot of stem cells ready for collection. It was a surprise to the technicians who were with us and they were pretty sure they could get the 20 liters Dr. Collin’s group requires in one day. Ok it was a 6 hour day but better than what we had anticipated. Our transplant coordinator had warned us that they scheduled 5 days for collection but usually harvested enough by the 3rd day. Prayer changed that for Doug!

He was in a hospital bed and I sat beside him in a broken “chemo chair”. There were two techs from the blood bank. The one who watched the machine had worked for the company that built and manufactured it, went through the clinical trial period using it and trained end users at all the cancer centers in the United States. He said that 6 months ago a computer version came out but he doesn’t trust his own home computer to work right all the time so is biased towards one that is monitored by a human (solid state cell separator rather than a computer controlled cell separator). He retired from the company and now works part time for the blood bank.

As he was attaching Doug’s lines to the machine (or the machine to Doug’s central line) he told Doug that Doug was about to receive one of the only medical procedures that is painless. One just has to tolerate resting in bed (which Doug is tired of doing!).

The male tech was concentrating on the machine most of the time and the female did paper work as well as other duties in and out of the small room where we were located at the clinic. The operator of the machine determines what cells are coming up the “collect” line. He watches the color and manually controls and fine tunes the flow as needed.

Once in awhile the male tech would sit down. That is when he and Doug talked about cars. He told Doug what he had owned in his lifetime and Doug mentioned his ’67 Chevelle Malibu Super Sport with a 396 engine. Then the tech said he was car poor now. He most recently sold one of his 3 Vipers (a red ’92 with black striping and a silver ’99 with blue striping!) After that Doug didn’t admit to driving a hand-me-down Buick and changed the subject. (Men are funny that way). Doug just reminded me that over the years the guy also owned several Shelby Ford Cobras along with a number of Covets.

I found it interesting that the techs told us that the smaller the individual the longer the process takes. During random conversations he noted that at anyone time only 300 CC of Doug’s blood is in the centrifuge and lines. The plasma and leucocytes (where the stem cells hang out) go into separate bags and the platelets and red cells go back into Doug. Some red cells do get into the collection bag but they are heavier and he watches as the bag layers—the red cells being heavier thus dropping to the bottom of the bag.

He also noted that we all have tumor cells inside us. The difference between someone who gets cancers, although not just this simple, is that the immune system cannot control the multiplication of the cancer cells. If there would be any cancer cells in the collection bag, the intent is that the next chemo Doug is to receive will knock out all cancer in his blood. When the bag of happy cells are put back into Doug 48 hours after the chemo he will again receive injections to build up his immune system until the happy cells graft back into the bone’s marrow and cancer cells can be combated. Stem cells travel through the bloodstream to the bone marrow where they lodge and differentiate into all types of blood cells to help prevent infection and repair the body.

This quote regarding stem cells from Dr. Paul Simmons helped my understanding:
“No other cell in the body has that combination of self-renewal, extensive proliferation and differentiation capacity,” states Paul Simmons, Ph.D., director of Stem Cell Research at the Brown Foundation Institute of Molecular Medicine for the Prevention of Human Diseases at The University of Texas Health Science Center at Houston (IMM). “Understanding how to control the differentiation of stem cells is still a major endeavor that is underway in many labs around the world.”

Six hours after Doug's treatment began the machine had separated 20 liters of what the blood bank will cool than freeze until they are returned to Doug 48 hours after his last chemo treatment next week. A warming process of the blood products takes place first but that is part of “the rest of the story”.

Doug was disappointed yesterday (20th) when he learned that his chemo cannot be given until next week. His white cells are too high—a good thing at some times and not good for the impact Dr. Collins wants to have on the cancer cells in Doug’s body. Doug is still very weak and wishes for more energy which I cannot go out an buy or graft to him.

Memorial Day is celebrated early this year so Tuesday is the first day they could schedule the “sledge hammer” chemo that we are not looking forward to yet signal the beginning of the end of our battle to fight back. We know you will be praying with and for us and that support will get us through.

~Carole
P.S. To our friends in the medical field more familiar with blood than I am, if I have misrepresented anything known to you, I’d be glad to make corrections in my blog.

May 15-18

2008-05-18T11:40:00.000-07:00

The 15th and 16th of this month blend together in my mind as hospitalization routine for Doug (and me).

Doug has had engaging conversations with the medical team that has cared for him during his stay in the hospital. On the 17th when he was discharged to my care at home the discharge nurse said, “All of us want to know where you found such a kind man?” I smiled and told him it had taken me 40 years to train him and I wasn’t interested in training in another one!

Seriously it makes me proud to hear his care-givers in the hospital refer to him as kind considering the type of pain he had to cope with and how cruddy he felt over all. Just this week a relative (young adult) wrote that she felt Doug was the kindest man she knew and wished him full recovery. His kind way with me was one of the reasons I was attracted to him 40 years ago!

Doug slept most of the afternoon Saturday. Kristi was with us for the last time this trip and when she kissed us goodbye told us that she’d try to save up enough money to come back every three months or so. She loves Seattle and brought us a table top book of the city so she could point out to us the areas visually she talks about: where she lives, the area overlooking Lake Washington where she works, the dog park that she loves to hang out at with friends and their pooches. Of special interest is a view of the city that includes the hospital where Doug was born.

Saturday evening Doug’s temperature began its journey upward. Because he was feeling so weak and sweating abnormally he called the on-call doctor. His fever was 1/10 of a point from where he’d have to call the on-call team anyway. The on-call physician who had treated Doug in the hospital frequently gave us a new medication regimen to try and we were able to avert a trip back to the ER and the hospital.

As I write it is Sunday, the 18th. I checked on Doug throughout the night last night and administered his pain meds as scheduled, gave him a Popsicle and filled an ice bag for his head.

We went to the clinic this morning. Doug had the usual vital signs taken, his daily Neupogen injection, and blood draw. The nurse practitioner listened to his lungs and spent a lot of time talking with us alleviating my concerns about the “new normal”.

The chemo nurse drew a vial of Doug’s blood specifically for the “C34” test which she sent to the Carter Blood Care group today. They will evaluate the number of stem cells therein. We will receive word in the morning whether or not Doug will begin the stem cell harvest tomorrow or just go in for another injection. The team is optimistic and feels that Doug’s cells will be ready to begin the harvesting process tomorrow. If so, Carter Blood Care will bring the machine to the clinic. We are told collection is a boring process with little to no side effects.

The stem cells will be protected in dry ice from the “sledge hammer” chemo he’ll receive potentially late this week. When they are returned back into Doug’s system they will be “happy” and absorbed more readily to the bone marrow because they have not been damaged by the chemo. This will make Doug’s final recovery easier.

NEWS FLASH

At 1:30 p.m. I received a call on my cell phone from the weekend transplant coordinator for Dr. Collin’s team. She had just received the results back from the Carter Blood Care group re: the
C-34 test taken at 10 a.m. this morning. Doug is defiantly ready for collection tomorrow. We need to be at the clinic at 8 a.m. and plan to be there for 6 hours.

The most amazing thing is that when I asked about the C-34 she told me they begin collection anytime after the number 10 (which I have no idea if its 10 parts/?? –I’ll have to get back to you on that). Doug’s number is 412! I went into where Doug is and gave him the "high five". We are both excited to get to this next level of treatment.

It will be interesting how many days of collection it will take before they have enough for 2 infusions, one for now and one stored for future use should that be needed before Jesus comes and makes Doug’s body new.

~Carole

May 13 and 14

2008-05-14T20:10:00.000-07:00

The last two days have been a roller coaster ride as far as Doug’s fever, pain and nausea is concerned. Each time we ask the medical staff about this turn of events that keep him in the hospital they say “It’s normal."

Doug’s doctor did put off the stem cell harvest originally scheduled for the 13th. He shows no concern at all and tells Doug the dates are flexible and he's still on schedule.

To assist Doug they gave him 1 unit of platelets and two more units of blood yesterday (13th) and another bag of platelets today (14th). His fever spikes to 101 frequently. Fever and pain is most often blamed on the high dose of Neupogen (780 cc) that he gets each day. Even though he is still in the hospital, we are both sure he is where he needs to be. I would hate to be taking him to the ER each time his fever spiked.

I think I've referenced this before but today a nurse explained to Doug that the pain happens when the “baby white cells” are being asked to multiple rapidly and come out from the bone marrow into the blood stream. For Doug this causes sharp pain in his sternum.

Today (14th) we had a neat experience with Doug’s day nurse. She is a fun, vivacious individual who is easy to talk to. We also learned she is a contract nurse with a traveling nurse agency.

Doug said, “Tell me I’m not going to have pain after they harvest.
The nurse replied, “Well my pain lasted for about 3 days afterwards but I went back to work the next day.”

Doug: You mean you’ve been through this?
Nurse: Not as a patient but as a donor for people who are not well enough like you to use their own stem cells. If I am healthy, why not? I’ve been matched 4 times and donated 2 times. The first time was for a 15 year old boy who had acute leukemia. He is now 17 and in remission. The second time was for a 40 year old woman. I’ve heard she is in remission too but I haven’t met her yet.
Doug: You mean you can meet the one you donated to?
Nurse: Yes, you can meet after their first full year in remission.
Doug: Why would you donate two times?
Nurse: I’ve been giving blood since I could and put my name on the National Bone Marrow Donor Registry < http://www.marrow.org/>. I figure since I am healthy and can give someone hope and a better life I should. If I got sick or one of my loved ones did, I’d want someone to do that for me. As far as I know I am the only woman who has donated twice. There have been a couple of men who have donated twice.
Doug: How do they figure out you are a match?
Nurse: They start with blood type but then much of it is based on DNA testing. I don’t know all the details. One time I had an IV in both arms and had to sit without moving my arms for 8 hours straight. I had my DVD player in front of me and someone else put a new one in when it ran out. The hardest part is that they want you to have had lots of milk to drink before the harvest because the transplant depletes your calcium but I couldn’t go to the bathroom while I was hooked up to the machine. Well, they would hold a curtain around me but you have to be on a bedpan and that didn't appeal to me. The second time the harvest was from my hip bone.
Doug: What made the difference in the way they do the harvest?
Nurse: It is up to the doctor to decide what is best for the patient. The donor is not the patient. It is the way the physician feels the stem cells will graft the best to the patient.
Doug: May I ask if you are motivated to do this for others because of a Christian faith?
Nurse: Yes, I’m a Christian. God gave me the health I have and if I take it for granted He can take it away, too. My mother has always appreciated that I loved serving others before this but I’m her baby and when I did it the second time she wasn’t so sure because of the risks involved for me. I don’t even think of the risks. I think of giving hope to someone in need that I match and can help.

Doug and I were blessed by her testimony. It made me think about the fact that it would never have occurred to me to donate for a bone marrow transplant. Blood drives are frequent. We hear a lot about being organ donors. I am now much more aware of the essential need not only for whole blood donors, but also for platelets and bone marrow/stem cell donations.

It also made me think of a Donor that shed His blood on a cross to give all of us hope.
~Carole

May 10-12

2008-05-12T08:06:00.000-07:00

We've been told to expect the unexpected and that is so true.

May 10 was a quiet day until 10 p.m. when Doug's fever spiked. The on-call doctor told us to go to the ER and from there Doug was transported to another hospital and the floor best suited for cancer patients.

May 11 blended in a bit with May 10 as you can imagine. But the special part of May 11 is that it was Mother's .Day. When I went to the hospital, our daughter Kristi who lives in Seattle, WA was "hiding" beside her father's hospital bed to surprise me. Her Daddy had worked with her to pull off the Mother's Day surprise for me. I also received a large basket of "goodies" from our kids in New York. I love my kids. I'm glad they love me!!!

As I write this posting, May 12 has just begun. Doug is begging the doctors to let him come home from the hospital. He is still receiving bags of medication to fight whatever bacteria caused the fever and I don't believe the cultures taken in ER have been read as yet. I'll check in a few minutes when I go to the hospital. He no longer has a fever.

Today is Kristi's birthday. We'll talk about the first day we saw her. We drove from where we were living in Wenatchee, Washington to Brookings, Oregon to pick her up. We'll also pray a prayer of gratitude for her birthmother's unselfish gift to us.

I'll find a time to take Kristi somewhere we can celebrate her special day. Doug wants to do something special with her also. Ordering up two guest trays of hospital food is not what he has in mind!!

~Carole

May 8 and 9

2008-05-09T16:56:00.000-07:00

The most exciting thing that has happened to us in the last two days is that Thursday a fire alarm sounded in the clinic while Doug was getting his injection and central line dressing changed.
It was more than an alarm. In the small room where we were located the pulsating alarm set in motion two strobe lights that flashed repeatedly. A commanding voice announced that something suspicious had been found in the building and that everyone was to evacuate the building immediately.

The nurse said to remain where we were and if they saw flames they would usher us out. The building is a modern glass edifice eight stories high. I wasn’t thinking fire rather that something suspicious could be anything at a medical facility where on floors above us research is carried on in relative secretive, secure areas.

Fortunately for us the clinic is on the second floor. The nurse shut the door to the little room we were in. I watched out the window as people streamed out the main entrance and Doug sat calmly in the designated chair.

In what seemed like quite a long time to me the voice announced that patients being treated were to remain with their medical staff. The alarm was a routine building drill.

Today Doug feels real punk and has stayed in bed most of the day. At clinic we saw that his labs show his blood’s infection fighting cells are at 0.0, numbers they predicted to occur on this day prior to start of treatment. How they know that in advance is beyond me.

Doug will (does!) feel weak and have general bone ache throughout the weekend but nothing like the pain he experienced in his sternum the other day. My job is to help him want to eat something….monitor his temperature, help him to avoid infection and bleeding.

Doug has 9 a.m. injections at the clinic both Saturday and Sunday. We were told it is a quiet time in both the building and the clinic and he’ll be in and out quickly. As in the past I’m grateful for internet church services that allow us to watch on a computer. I hope we can both enjoy services together on Doug’s laptop.

~Carole

May 6 and 7

2008-05-07T19:14:00.000-07:00

Tuesday (May 6) started our as another short day. Our clinic appointment for the daily Neupogen injection was at 12 noon. We waited just a few short minutes in the waiting area and Doug was called right in.

This is day 2 of the injections that are being given to “call” (my word) the white blood cells out of the bone marrow in readiness for the stem cell harvest.

We went home. Doug wasn’t hungry. He told me I was free to go do whatever I wanted to do and he went to bed. I decided not to go anywhere and within minutes heard him moaning. I went into see if there was anything I could do. He indicated he had pain in his sternum. It got worse. I had never seen him writhing in such pain even when dealing with the disease initially. He said it felt like someone was sticking a dagger in his chest. With a central line into his heart I was anxious thinking it might be a heart attack.

I called the clinic’s emergency line. They said someone would get back to me. No one did (as soon as I needed them too anyway as the pain was more and more severe) so I called again. In the end the clinic nurse I talked to (and who had given him the injection earlier) told me to bring him back to the clinic. I knew Doug was not feeling well because he went in his robe and got into a wheel chair when we arrived.

After an hour in the clinic they sent us to the hospital ER to rule out any issues with his heart. After an hour at the clinic we checked into the ER at 4:00 p.m. After seeing the triage nurse, we waited 1 hour in that waiting ER room. I had Doug put a mask on. I hate sitting around sick people when you don’t know what bugs they are sharing and wished I had a mask to put on.

Finally we were taken back to a stark room and spent the rest of the evening there waiting and waiting as they ran tests and labs. The ER doc came in at 9:15 to talk to Doug for a few minutes and again at 10:30 to say Doug could go home. He didn’t spend more than 5 minutes total. We did have a very nice male nurse who we saw about ever hour.

They determined the attack must have been a reaction to the Neupogen and the ER doc said he hadn’t found anything that would indicate concern with Doug’s heart. Since we hadn’t been home since noon (nor eaten) we were exhausted by the time we piled into bed.

Today (May 7) we had to be back to the same hospital for a CT scan that Dr. Collins had ordered prior to Doug’s spell. (They wouldn’t do it last night as it wasn't part of the order.)

We waited 2 hours in radiology this time for that scan which took all of 10 minutes. We do not have the results of that test nor do we know for sure what Dr. Collins was looking for. The chest X-ray last night did reveal that Doug still has some pneumonia in one lobe of his lung but they knew that before giving him the chemo last week.

Next we went back to the clinic for another Neupogen injection. Today we waited at the clinic one hour after the injection to see if Doug would have a similar attack. He didn’t.

He still has pain in his sternum but we've been controling it with pain medication. His pain is nothing like yesterday. Hopefully tomorrow will be as uneventful. He'll have injections now until the 13th.

We had to get a prescription filled after the clinic visit and can’t believe how the day flies by doing just one or two things.

One thing we learned from this experience is that bone pain is anticipated but is different in every individual. It generally is not as severe in the sternum so close to the heart. I'm glad they were playing it safe with the ER tests.

No one can predict or prepare you for where reaction will actually materialize. As a result of stimulating the cells in the bone marrow, pain in adult patients occur most often in the flat bones whereas in children getting Neupogen the pain is in the round bones. Pain in children is greater due to the fact they are still growing. As one who witnessed the greatest reaction to pain in my husband in our 40 years together for better or for worse, I can’t imagine what it must be like for parents to have to watch a child experience pain that has an even greater impact on their body.

We saw the devastation in Miramar on the news today and Doug said, “There is always someone worse off than I am.”

It’s all about perspective and a heavy dose of patience while we experience the need to sit and wait.
~Carole

May 5

2008-05-05T20:27:00.000-07:00

We had a great day today!

They drew blood. Doug's lab numbers had not dropped (something they expect/want to happen) and predict that they will by Thursday and that he won't feel as chipper as he did today. The chemo nurse we had today asked questions and answered ours. He receivd his first injection of Neupogen, they recorded his vital signs and said they'd see us tomorrow.

As of this sevening he has not felt any side effects from the injection.

We like short visits.

~Carole

May 4

2008-05-04T16:33:00.000-07:00

Today we woke to beautiful weather and a perfect temperature to spend part of our day outside. We used Press and Seal to cover Doug's central line so he could take a shower. It seemed odd to tear off a sheet to use on ones body. I wish I had invented something with so many applications. It worked great.

We probably spent a good hour sitting outside during the late morning. Afterwards we ate a small lunch. Then I worked on a writing assignment while Doug took an afternoon nap.

It is evening as I write you. We've just returned from a short drive. I like to change the scenery as often as Doug can tolerate so that being ill doesn't seem too isolating to him. We just have to stay away from people.

Doug told me a few minutes ago that he can feel he is getting weaker. Dr. Collins gave us a manual of what to expect during our journey throughout the bone marrow transplant process.It is a great reference. I read Doug the part that says that 3-5 days after a heavy dose of chemo the reaction he is feeling is normal. That seemed to encourage him. He had his chemo Thursday so, according to the manuel, he is feeling just as they expect patients to feel. The manuel also outlines other signs to watch for which I will do with him.

Tomorrow we have a clinic appointment late morning so I'm sure they will make him as comfortable as possible while they build him back up.
~Carole

May 3

2008-05-03T15:55:00.000-07:00

Yesterday was my brother’s birthday. I was talking with him on the phone in our family room. Doug shut the bedroom door. (During this time I’m sleeping in the guest room so that both of us get the rest we need.) I never gave it another thought when Doug shut his door. I kept on talking.

I checked on Doug once during the night but I guess it wasn’t the right time. This morning when I heard him stirring I went in to ask what he felt like having for breakfast. He told he had a horrible night. I’ll spare you the details but he probably lost his extra 7 pounds….

He should have had his nausea medication but didn’t call to me to ask for it. He was too sick plus he told me he didn’t want to interfere with my rest. I told him that I am here for him and rest comes to me when needed. I don’t want him to get dehydrated or have to go into the hospital again if we can prevent it.

Because of his condition I called the weekend on-call number to ask which of the three nausea meds I should give him. Doug described his night to the Doctor and we started the nausea pills and other items he recommended. I am recording his fluid intake and gently forcing him to drink. He has been sleeping most of today. He didn’t get much rest last night.

He says he’s learned his lesson and knows he needs to call me. We have a bell he can ring and I’d be by his side in a second. He just has to decide to use it.

So today I’m being quiet. I know he was disappointed he didn’t just sail right through the chemo. I’m sure the clinic team knew he wouldn’t and had us prepared with the proper medication. He just has to decide to do what they tell him to do.

He says he feels much better this afternoon but continues to nap. He hates how weak he is feeling because he has memory of that feeling from before. I remind him that he did get stronger and he will again.

I believe were given two days “off” this weekend because the team at the clinic knows the pattern and knew we would need them. While I don’t agree with Doug that it is wise to care for him self throughout the night at home after a heavy dose of chemo, I realize he did it unselfishly because he wanted me to get my rest. He has always been considerate of me throughout our married life but I told him this is not the time to think of my needs. It's time for him to let me take care of him.
~Carole

May 2

2008-05-03T15:50:00.000-07:00

The side effect of Doug’s treatment yesterday has been cramping in his stomach. He tells me he has still not had one tinge of nausea. Other than that (and reduced energy that was expected) he wanted you to know all is good.

We had a very short clinic visit today—basically they weighed Doug. Even though he visited the bathroom every two hours during the night to eliminate fluids, overnight he gained 7 pounds. He said he felt "bloated".

They unhooked him and freed him from his suite case. Nothing else was needed today. We were free to go home. We don’t go back until Monday. According to the schedule it is the only weekend we don’t have to go to check into the clinic.

When Doug told the chemo nurse he hadn't had nausea she said to have the medication on hand—just in case.
~Carole

May 1, 2008

2008-05-03T15:01:00.000-07:00

Before I describe much more I want to tell those of you who have cancer, read this blog and may be considering a stem cell transplant that everyones treatment process is unique. As we have talked to others in Dr. Collins clinic in the waiting room we have come to realize that. We talked to a man today that had a different type of blood cancer. Even though Dr. Collins is his physician his treatment has been very different from Doug's.

So don't read this blog through May if reading would give you more concern than comfort. The same Master Physician that is guiding us will guide you but may take you in an entirely different direction. Our intent in sharing our journey is so that our friends and family can keep up with what is going on with us and know how to pray. We are not describing a standard treatment for blood cancers nor for multiple myeloma or a stem cell/bone marrow transplant.
Today we had to be at the clinic by 9:30 for 7 hours of sitting. Doug was in a private area and usheredd into what has become known to us as a chemo chair. His chemo nurse’s name was Debbie. Right away she made us both feel as much at ease as is possible under the circumstance. I had taken lots of reading materials and sat in a chair across the room from Doug.

First he received an infusion of saline solution to hydrate his system. You’ve all seen how the bags hang from a moveable pole with hooks on them. When that bag was empty they brought a smaller bag that contained an anti-nausea medication Zofran combined with 10 mg Dexamethasone, the latter of which he has taken orally since November and doesn’t like how it makes him feel.

When those drips were complete Debbie brought in a large bag that she referred to as a heavy dose chemo, 7600 mg of Cytoxin. (This is not the "sledge hammer" chemo Dr. Collins told us about in his initial consult. Just an extra one he determined Doug needed prior to the stem cell harvest. The hammer comes down May 20th if we stay on schedule.)

I asked Debbie if it were true that the poison goes right through Doug’s heart. She said, “ Yes. Think of the heart as a washing machine. Your heart swishes the blood around inside and when the heart beats, through muscular action with a whoosh ejects the poision out of the heart into the system as waste. It's done its job and needs to leave the body.”

The reason she wanted Doug to drink water while receiving the fluids during this process is that the bladder serves as a holding tank for waste. She wants him to get Cytoxin out of his system as quickly as possible so that it won’t irritate his bladder.

Doug was hungry so I went up to the Food Court to get us both something to eat. Soon after we finished eating a lady named Nellie introduced herself as being the representative from Cater Blood Care organization. She will be doing the stem cell harvest, holding of the cells for 24 hours, then returning them to Doug through infusion in his central line. The harvest part of the process is scheduled for May 13th.

Nellie told us that when she was young she wanted to be a nurse but she hated the sight of blood. She got married and had a child. At age 22 job she got a job at the blood bank where she became fascinated with blood science. (I’d guess her to be in her late 40’s now.) She worked some in the mobile clinics with donors and eventually worked up to be the regional supervisor. She admitted to becoming bored after awhile so when the opportunity came to her three years ago to transfer to the stem cell team she did so. She now feels she has the big picture of the entire process.

She had papers for Doug to read, a questionnaire to fill out, and need of his signature. She answered our questions and said she will see us in a few weeks.

When the chemo bag was empty they brought in one more bag of saline solution. During this entire process Doug could walk from the chemo room with his pole to the men’s room!

When the last bag was empty Debbie brought in a suite case that had the largest bag of fluids yet. It contained several gallons of what Debbie told us was just hydration fluid to help flush out the Cytoxyn.

A tube from the one end of the bag went into a computer that is about the size of a paper back book. The tube from the other end went into a tube connected to one of the “straws” running into Doug’s central line. Thus he was connected to his suite case! It was on wheels. When he walked and pulled it behind him he looked like he was heading to the airport.

His dressing was changed before we left and it looks real good. He has three different medications for nausea but has not felt the need for them yet.
~Carole

The Central Line

2008-05-03T14:45:00.000-07:00

I haven’t had a chance to sit down at my computer until now to tell you that the placement of Doug’s central line went well.

We first checked into the clinic for a chest X-ray and labs because Doug had been battling a bit of pneumonia and a cough. He’d been on an antibiotic so the team wanted to be sure he had cleared up enough to proceed as planned. Because we had to wait to be seen and wait after for test results we were an hour later than scheduled to be at St. Paul’s hospital for the surgery. Doug did get the OK from Dr. Collins and we are now on the next leg of our journey to fight back.

I’ve asked Doug to dictate to me the happenings of the next few hours as obviously I was not with him in surgery.

Doug: “They gave me one of those all-to-familiar hospital gowns and put me in a bed in a surgery “hold” room. I was asked at least three times who I was even though I had an arm band on with my name on it that they looked at each time. I wasn't sure I wanted people working on me who couldn't read :-)

A real nice hippy-looking type fellow came in and told me he was going to be my nurse. We chatted and he told me he had been a nurse for 20 years in various hospitals in Dallas. Then a Korean female nurse came in who said she’d be checking in on me. She told me what was going to happen and apologized that the surgeon was in a long procedure but that I would be next.

I was wheeled into the OR and prepped. They put a paper drape over my body--including my head—so that I wouldn’t be able to see them working on my chest. That was probably a good idea!

They gave me a local injection in my chest (Lanacane _sp?) and began the procedure. I was awake, talking and joking with the folk which they told me they appreciated. I felt no pain.

I now have a hole in the right side of my chest. (Think don’t hug me there) with a line that goes up into my neck and then makes a 180 degree turn down into my heart. From the internal line three clamped tubes come out and hang down on my chest approximately 4 inches. Carole refers to them as my straws. The good news is that I don’t have to get poked and prodded every time they draw my blood for lab work.

They use these three tubes to draw blood or to infuse liquids and medications including chemo drugs. They will also be used to harvest my stem cells, give the grand slam chemo, and infuse my stem cells back into my blood stream. It is my job to treat my filling station with the greatest respect and care! (Of note is that the three clamps are red, white and blue.)

They put a large dressing on the area then wheeled me back into the holding area bed to watch me for an hour. I had not eaten the day before so they gave me a sandwich and an apple which I enjoyed. After 1 hour I was put into a wheel chair and taken out to our car.

Like other Dallas and Fort Worth worthies, I now have my own personal driver. Her name is Carole!”
~ Doug and Carole
PS During the month of May I'll be using the date as the label of the post to make it easier to follow the day-to-day treatment process.

The Peace Sign

2008-04-29T10:34:00.000-07:00

In 2005 Doug and I were gifted with a peace Lilly. It had many beautiful white blooms on it when it came to live at our house. I transplanted it to a larger pot once. When the leaves droop, I water it.

When the original white flowers said good-bye, I was sure others would soon replace them. For the entire year of 2006 and even 2007 up until November no white flower appeared—just lovely large green leaves that called to me when they needed a drink of water.

Doug was diagnosed with cancer in October. As I was watering Lilly one day in November just one white flower shot up through the foliage to greet me. It lasted a long time. It reminded me that God’s second book is nature. It was a message I needed at that particular time. It may seem a bit way out but I took that one white flower on a peace Lilly as a sign of encouragement as we faced some very dark days.

That bloom is gone.

Friday was the American Cancer Society Relay for Life event here in Burleson. If you have never observed one in your town, you must go just for the first 1-2 hours for the opening as well as to watch the first lap around the track. (The event lasts all night long and one member from each team in on the track walking throughout the night.)

We first became involved with Relay through our ministry-driven Sabbath School class in Lincoln, Nebraska. It was a real witness/ministry to have our very-community-prominent church involved with so many other churches, businesses and not-for-profit teams in something so positive and important. So when we moved to Texas I went to check out the one in this city. It wasn’t the same because I didn’t know anyone or wasn’t part of a team.

This year was different. The impact hit home. The monies raised go for cancer research as well as to help those people who could not otherwise afford testing and cancer treatment. Relay does not focus on any one cancer like Race for the Cure does for the fight against Breast Cancer for example.

I’ll spare you the details but suffice it to say that Doug walked the “survivors lap" around the track (standard size high school track with teams camped every inch around it). Survivor t-shirts were purple so the survivors were easily identified when they all together take that first lap. As they walked or were pushed in wheel chairs or pulled in little red wagons around the track people cheered and clapped encouragment.

The caregiver lap was next and then all the teams from various community groups walked as a team. From then on one member from each team would stay on the track all night long.

It was encouraging to see the hundreds of survivors in this one small city. I don’t have the exact count yet but there were hundreds of all ages. When I get time I’ll post a picture of Doug. The back of his shirt said, “Celebrate but Remember. Fight back”. We are fighting.

We start the stem cell transplant journey tomorrow morning. Doug gets the central line “port” put in his chest. He has been on oral chemo all this time so this will be a new thing. He’ll be in the clinic for labs and then surgery which, according to our schedule, won’t last long but Doug will need to remain in the hospital at least 6 hours after surgery to be sure all is well with his new enhancement!

Today I bought some nylon tape and some cloth tape to see which will work best. We'll put “Press and Seal” over the bandage and tape that to Doug who has to have a shower to function. He knows the risk of infection so will be very cautious. I’m sure we both have a lot to learn.

The peace Lilly has been flower-free for a couple of months now. Last week one white flower looked up at me as I gave the plant her drink….Lilly's flower stands tall today.

~Carole

Break

2008-04-22T20:27:00.000-07:00

I've decided that anyone living with any life-threatening disease needs a break from making that their daily focus. Doug and I were fortunate enough to have that break before heading into the bone marrow transplant that starts in earnest April 30th.

It is nothing short of a miracle of God's grace and answers to your prayers that Doug has been working now for 3 months, traveling and he even attended meetings in the North Carolina last week specifically for his continuing education with others who do similiar work in the United States and Canada. I went with Doug and had my own relaxation while he was in meetings. We also had times together to build lasting memories. During our time away we didn't even mention anything to each other about cancer or what is ahead. It was a refreshing change of pace.

That changed when we returned this week. On Monday we went to Dallas and met with Kristi, the transplant coordinator. She went over Doug's daily schedule for the month of May. Doug will be treated on an out-patient basis. Some days he'll have to be at the clinic all day. On other days just until his labs are drawn and review of his progress is evaluated. Kristi also reviewed the results of all his previous tests and his current labs/marker numbers. She wanted to answer any questions we might have before he signed the official consent forms for the transplant.

When Dr. Collins came into the room to answer any questions we might have of him he acknowledged that after reading through Dr. Mandells reports from November onward that Doug had been a very ill man. He confirmed that the disease caused that. Now the disease is under control. He didn't sugar coat the fact that there will be days when Doug will have similiar feelings (fatique, nasua, pain, weakness, etc.) but for every sympton there is something they can do to make him comfortable. Doug just needs to speak up and let them know immediately what is bothersome to him.

Their goal is to destroy all remaining cancer then bring him back to health. We both feel we have been at the lowest possible place already. This time if we go to that point again it will only be short-lived and there will be a team of specialists to assist us at every step of the journey. Before it was hard on me as I felt so responsible for making the correct decisions for his care.

We are thinking positive thoughts. In fact when Doug's colleagues at the meetings would say, "Doug, it is so good to see you." His reply was "It's good to be seen." He still can't believe that he has cancer. Like all of us we think that a terminal disease is something other people get. Yet when we go to clinic and wait in waiting rooms we realize that cancer is no respecter of age, race, gender or any other stereotypical classification.

We are looking forward to having this behind us and appreciate your continued prayers and support. Even though we'll be very busy, I'll try to blog as often as possible.
~Carole

UTSWMC 3-30-08_Tests

2008-04-02T11:50:00.000-07:00

Monday we spent the day in Dallas at UTSWMC. We missed tornado weather in Burleson. Neighbors reported that it "rained" sheets of ice which explained why we had to clean up a mess of leaves (and the "worm-like" new budding danglers on the oak trees) around our deck and in the pool. Hail left pit marks on our fence, ferns and flowers but it could have been much worse.

It was interesting for us to meet with the social worker. Doug saw no need for it--until afterward… (What a man!!) It was a1 1/2 hour visit with Dale, a member of the transplant team. As it turns out Dale is the son of a Methodist minister whose father also became an administrator in the Methodist Conference. He understands some of Doug's type A ways from living with his father!

The meeting was as much a family history intake as anything. He also went over our finances and took a copy of Doug's health care power of attorney (and the Texas "Directive") which is required before ANYONE can talk to me or give me a sheet of paper with Doug's personal information on it. The forms were also required to have at the hospital admissions office prior to Doug’s tests. (Those of you who don't have someone named may want to consider ramping that up even if you are young and in the best of health. A parent can't talk on behalf of a child over 18 or a wife for her husband or a sister for her brother, etc., etc. etc.)

When it came to Doug's health history it also came up that Doug was adopted. Dale asked how that affected his childhood-teen years and attitude towards adoption now. Doug replied that his own experience was so positive that we adopted both of our children.

Dale didn't seem to know much about Adventists. Doug told him Adventist roots are in Methodism and that my most recent college teaching was at Nebraska Wesleyan University when we lived in Lincoln. This gave us “connection”. What he was getting at when asking what Adventists believe was to determine if any of the treatments Doug might need--such as blood transfusions-- would interfere with Doug's religious beliefs. (He actually said—“Like Jehovah Witnesses?”) Since Doug has had 7 transfusions already Dale was reassured by Doug that he is putting his life into the hands of the transplant team.

Dale is someone I can turn to during Doug's treatment. He said if he likes people real well he'll give them his pager number to contact him on weekends otherwise he's available M-F.
He then gave us his pager number!!

I feel more comfortable now with having someone who will watch out for us and help us know who to communicate what to as needed with all these people involved on the bone marrow transplant team:
The Doctor
The Oncology Fellow
The Physician Assistant
The Nurse Practitioner
The transplant coordinator
The transplant nurses
The dietician
The chaplain
The pharmacist
The OT/PT therapist
And Dale, the social worker.

Dale's report from our visit is put in Doug's chart for the entire transplant team to refer to. A copy is sent to the team at the Zane Lipsey hospital which is where Doug would go if he needs to be hospitalized. The staff assisting us there will also know our background and some of our unique-to-us peculiarities.

Dale also gave us a feel for the apartments the Medical Center has for patients being treated on an out-patient basis. He also told us about the hospital room should Doug need to be hospitalized. The hospital room he described is also like a one-room (fairly good size) small apartment--with a small refrig, flat screen TV, CD/VCR, extra bed for the caregiver if she wants to stay, shower, etc. The rooms have Internet access so we’ll take Doug’s laptop. Each room is on a special air exchange system. No plants or flowers are allowed. The nurses are specifically trained for transplant care and will "dispose" of things and people if they interfer!!!

Before the transplant a chaplain meets with us to do a "blessing" that signals the beginning of a new beginning but one that requires us to forever live with cancer.

Dale wanted to be sure we knew what we were getting into and made us feel very cared for. He also agreed with us that compared to what we shared with him about what Doug had already experienced the impact of the transplant and the recovery probably wouldn't be much worse. Fatigue is something we know about but this time will also know it is 'normal'. The potential for infection will be our greatest enemy.

The 3 tests Doug had after the social worker's visit happened at St. Paul’s hospital (there are 4 or more hospitals on this campus). We were there 6 hours. Much of the time we were waiting in the waiting rooms. All the tests were ones Doug had never had before. All were in different areas of the facility.

During the skeletal scan Doug said his whole body was "radiated". It was different from the MRI he had two weeks ago! The next was the MUGA (heart test). They drew his blood then he had to wait 1/2 hour in the nuclear medicine area before going back for the test. The technician put electrodes on his chest and he lay on a pyramid-like machine. The tech tracked the rate of Doug’s blood flow through his ventricles via her computer. She also tracked the rate the left and right ventricles opened and closed. This gives the doctor Doug’s base line as the large dose of chemo can impact these functions.

The other test was a pulmonary test where Doug was put into a glass chamber and had a tube in his mouth. The technician told him when to breathe in and out, slow, fast, deep breath, shallow breath, etc. At times the tech didn't have any air flowing into the tube while at other times there was air flow. I don't understand it all but probably even Doug didn't either.

We do have access to all his test results online at a secure website. At our next visit we will go over them with Dr. Collins. It is just amazing what they can see and do with ones body these days!

This morning he and one of his collegues flew down to the Valley. They will return tonight.
We are learning to live with cancer.
~Carole

In Doug's Words

2008-03-26T16:05:00.000-07:00

Before I tell you about my bone marrow biopsy today let me take this opportunity to thank each of you who read this blog and who are on this journey with Carole and me through prayer, friendship and encouragement. It is nothing short of a miracle of God’s healing and the genius of medical science that I have been able to help Carole around the house, return to work, take a trip with the officers and am feeling so good. It is a humbling experience to know I have so many people petitioning Heaven on my behalf. Saying thank you seems inadequate.

Today Carole and I drove to Dr. Collin’s clinic for my bone marrow biopsy. Carole thought I had previously had one but I told her and can tell you that what I experienced today I had never experienced before!

Two lovely ladies asked if my wife wanted to be in the room during the procedure with me. I assured them she did not! I don’t have eyes in back of my head so I could not see the instruments they used but I’ll describe the process as I know it to be true….

First the lady in charge of the needles decided which hip she felt was best (emphasis on her pushing and me feeling it.) Then she put anesthetic on it. Then she numbed the area with Lynocane (not sure that is how it is spelled but it a numbing injection except that bones can not be numbed!) Then she stuck a needle into my right hip bone and withdrew the marrow from that bone into her syringe. The contents will be analyzed and my cancer re-staged. She wanted to be sure she had enough (I’m guessing) so she did the same thing a second time.

They then asked if they could take a “sample” of my bone for the purpose of research. I had to sign some consent forms which I did and this time they took a sliver about 3/4 of an inch long off my hip bone. They let me see it. They told me it will be kept forever. I don’t know what that means but I guess it means that at least part of me will always be in Texas!

Next Monday I return for more tests (skeletal scan, pulmonary, and heart-health) and to see a social worker. Carole and I are going to my North American Division meetings and when we return I’ll meet with Dr. Collins who will go over all the test results and I’ll sign the consent forms for the transplant and they’ll begin giving me injections to appeal to the stem cells to come out of my bones (or something like that). Please pray they do because the alternative isn’t much fun either. Once harvested they give me one heavy dose of chemo and wait 48 hours until they infuse my own cells back into the blood stream to start their way back into the marrow to make my own blood.

They gave us the consent forms today to read through in advance of all this and Carole stopped reading after page two. The truth is that there is risk in living. There is risk in my not having the transplant and a risk in having it. My faith is in the Master Physician who has seen me through this so far. Depending upon my ability to avoid infection I will be treated as an out-patient. Carole and I will be in student housing near the clinic where I’ll go every day for labs and check-ups. I’m not expecting any of this process to be fun but I am expecting to be back to my family and my work and, God willing, feeling even better than I do today.

Carole and I value your continued prayers,
~Doug

Amazing

2008-03-14T17:20:00.000-07:00

Today one of our supportive physician friends not connected directly to Doug's case wrote this in response to my most recent blog:

"Did the Dr. mention that stem cells (of any sort) are stored at -197 degrees below 0 Celsius and when they are thawed out, they do their work? I think that some cells have been thawed after 20 years and done their work. It is still so amazing to me!"

No, Doc, Dr. Collins didn't tell us those fascinating details.
Thanks for your wonderful insight. We agree with you. That is amazing!!!!
~Carole

UTSWMC Consultation (long)

2008-03-12T21:11:00.000-07:00

It has been awhile since we’ve chatted. There hasn’t really been much to tell you about other than the two days of snow fall last week that closed schools and some businesses here in North Texas. Having spent the majority of our careers up North, we smile at how little snow it takes to shut things down here.

When we lived in Maine we had so much snow we had to call in a back hoe to take the top layer of snow off the sides of our driveway so it wouldn’t collapse on us. I won’t bore you with our snow stories from Michigan, Pennsylvania, Nebraska and Washington State.

Today it was 80 degrees for a high today(yep the snow melted!) and a beautiful day to travel to Dallas for the consultation with Dr. Collins and his team regarding Doug’s bone marrow/stem cell transplant (hereafter referenced as I write simply transplant).

His appointment was at 1 p.m. at the University of Texas Southwestern Medical Center’s (UTSWMC) Hematopoietic Stem Cell Transplantation Program in Dallas. For those of you who have flown into Love Field in Dallas on Southwest Airlines, the medical district of Dallas is in that vicinity. The complex is HUGE and really a city within a city comprised of many buildings. We are lucky to live so close to such specialized services.

Dr. Collin’s office, lab and clinic is in the Seay Building named after a Dallas couple who have given more than 35 million dollars to UTSW and Southwestern Medical Foundation as well as to other hospitals in Texas. The structure is stunning. The info sheet says that the building houses some of "the most ambitious research and clinical programs in the world". You even have to use valet parking. There is no other option—and patients don’t receive any validation sticker either.

The moment we walked into the glassed entrance we gasped at the largest and most beautiful Chihuly blown glass structure in brilliant red-orange. Its platform is a black granite water bed. We knew it was a Chihuly because we were privileged to see some of Dale Chihuly’s work when it was on tour several years ago in Atlanta thanks to my cousin and his wife who live there. Little did we dream then how much his art would come to mean to us now.

You can get a taste at http://www.chihuly.com/ and actually view what I can’t describe in words in the entrance of the Seay Building http://www.chihuly.com/installations/public/Art/seaytowerB.html According to the description the receptionist in the lobby gave us, the tower includes 1,100 hand-blown glass elements which were flown from Mr. Chihuly's workshop in Seattle, Washington and assembled on-site in the Seay Building.

The first stop we made upstairs was to see the receptionist. Much of the pre-registration was done via Internet and mail. Then on to Dr. Collin’s lab for another blood draw. After waiting only a few minutes we were escorted through a room with the now-familiar chemo chairs (with patients receiving treatment) then on into a room where Doug’s “vital” signs were taken. Afterwards that gentleman took us to a room with the name plate “Biopsy” on it. Nothing had been said about having a biopsy today. We were told Dr. Collins would be in to see us.

Providentially for him Doug spied a copy of “Flying” magazine on the ledge. Those of you who don’t know it, Doug has a private pilot’s license that is now out of date. He once co-owned a small plane with a buddy when we lived in Santa Barbara, California, when we had no children and when he could afford airplane fuel. Doug would let the Flying magazine subscriptions he didn’t have time to read pile up with other journals. When it was time for some conference meeting he’d take them along to read!! This was before computers and the type of things young ministers did back then when bored at the type of meetings Doug now hosts as part of his job!

We learned that Dr. Collins is older than he looks. He took his cancer training at University of California Los Angeles. His clinic only deals with blood disorder cancers.

He did a brief examination and asked Doug some questions. He told us he needed to gather more of Doug’s previous test results and talk again with Dr. Mandell to be sure they are reading off the same page. Then he launched in to a very simple explanation of what a transplant for Multiple Myeloma entails.

He noted that from the records it looked like at time of diagnosis Doug had been very ill but up until that time had been in general good health except for Asthma. He noted Doug has responded very well to the treatment he has been given from Dr. Mandell. (They know each other which is good.) Doug agreed and told Dr. Collins he has been to work at his office for the last month and feels the best he has felt in the past 5 months.

Dr. Collins said the first step they’ll do is a total work up to be sure all the organs of Doug’s body can tolerate the heavy dose of chemo. This will take several trips back to UTSWMC for the various tests. He didn’t expect any problems and said Doug looked like a good candidate for the harvest and return of his own stem cells, not a donors. That is good news!

After the tests Doug will have a central line, Neostar catheter, installed. It is a flexible tube that is inserted into a large vein on the right side of his chest that leaves the body as one tube but with three branches. The line allows the medical team to give large amounts of fluid, to withdraw blood as well as administer the chemo drug. They also use the catheter to collect the peripheral blood stem cells before transplant and return them after.

A surgeon puts in the line in the operating room under local “sleepy drugs” like those for a colonoscopy. Then Doug will spend the day in day surgery clinic for up to six hours.

The next time goes back he'll be given shots to stimulate the stem cells and when enough are harvested they are frozen. This can take 3-5 sessions with one 4 hour session per day. He doesn't loose blood--they just cycle it in and out of his body. During this "harvest" time Doug will drive the 1 hour from our home to the clinic and back as an out patient. Enough stem cells will be kept frozen to do a second transplant should that be needed in the future.

After his catheter is installed the transplant—which basically is the one-time high level dose of chemo-- the heaviest doses of chemo he’ll have received to date --may be done in one of the clinic chairs!! This was a surprise. The chemo dosage is given within 15-30 minutes time-frame but along with other liquids, anti nausea drugs, etc. the entire process takes longer. Overall this process is nothing as we had imagined it. The goal is to slam the cancer cells so they can not be recognized. He will probably loose his hair this time….

Then they will monitor Doug closely every day for infection. He will not be producing his own blood. He’ll probably need one or more blood transfusions. He won't feel good!!!! Two days after the chemo, Doug’s stem cells are unfrozen and reentered into his blood just as they were harvested out of it through his Neostar catheter attached to the machine that does the work. The next 10 days are critical and he will be given antibiotics to ward off infection.

During the time he may be an outpatient or spend part of the time hospitalized. They can arrange for us to stay in an apartment 2 blocks away because we live too far to be on alert during the crucial days when he stops making his own blood before the stems cells kick in again (not a medical term, but you get the picture) and start working normally. When Doug needs to be hospitalized it will be on a special unit with specialized care and a special air filtration system. He is not to have visitors and probably wouldn’t feel like it anyway but if I want to stay I was told there is a “cot” in the room.

I told Dr. Collins I’d be more than glad to visit him in the hospital and not feel responsible if his fever spikes, etc. Doug does not want me to sleep on a cot in his room so I’m announcing this right now that at his request I will probably honor it for my health’s sake. Have you ever tried to get sleep in a hospital??? Dr. Collins said the team will keep a careful watch on him always. I can stay but it is not necessary.

Doug will be under Dr. Collins team's care for about 6 weeks and then returned to Dr. Mandell here in Fort Worth for follow-up care. The actually transplant will probably take place the first of May.

Currently they can’t sell the transplant process as a cure but remission is where no cancer is visible in any test. Dr. Collins encouraged us when he said that currently there is so many advances in research that they like to have patients think of myeloma as a chronic disease that has to be maintained and monitored. With Multiple Myeloma the combinations of therapies and new drugs in clinical trials is giving encouraging results and moving rapidly as far as science and medicine is concerned.

We know that the transplant process is not as simple as Dr. Collins made it sound. We know it won't be easy. It is, however, a relief to know what is ahead and in many ways we were encouraged by what we learned today.

Keeping in Touch

2008-02-27T11:01:00.000-08:00

Today was to be the day we were going to Dallas for Doug’s bone marrow transplant consultation with Dr. Collins. I messed things up!

Last Friday I became one of the nation’s statistics of one who got a flu shot and, for no extra charge, the flu! Today I’m much stronger but Doug didn’t want me to push myself nor did he want to go to the consultation without me. The doctor isn’t available next week so the appointment is rescheduled for March 12th.

This gives me opportunity to share something else about our family and its love for one another with you. Our children have been marvelous in keeping in touch with us from a distance. (One lives in Seattle and the other in New York City.) Throughout Doug’s illness, their love and concern for their Dad has shown in many different ways.

One of the unique ways of keeping in touch has been from our New York kids. They send a postcard everyday printed with the pithy quotes of various famous and not-so-famous people. They have done this every day since January! I’ve just randomly selected a few of those messages received in the last few days to share with you.

To me, faith is not just a noun but also a verb. ~Jimmy Carter

It’s not the load that breaks you down; it’s the way you carry it.
~Lena Horne

During chemo, you’re more tired than you’ve ever been. It’s like a cloud passing over the sun, and suddenly you’re out. You don’t know how you’ll answer the door when your groceries are delivered. But you also find that you’re stronger than you’ve ever been. You’re clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it’s instantaneous. ~Melissa Bank

For peace of mind, we need to resign as general manager of the universe. ~Larry Eisenberg

You gain strength, courage, and confidence by each experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” ~ Eleanor Roosevelt

Worry is as useless as a handle on a snowball. ~Mitzi Chandler

When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

We shall draw from the heart of suffering itself the means of inspiration and survival. ~Winston Churchill.

Physical strength is measured by what we can carry; spiritual by what we can bear. ~Author Unknown.

Faith never knows where it is being led, but it loves and knows the One who is leading. ~Oswald Chambers

Cancer is a word, not a sentence. ~John Diamond

I better stop. They are all so good. Not all about cancer but all appropriate, helpful reminders on any given day for both Doug and me. The fact the messages are mixed in with our bills is an added plus!

~Carole

Our Date at the Meyerson

2008-02-19T12:34:00.000-08:00

Last week Doug didn’t have to take any medication except if he needed something for pain. He felt the best he has felt in months as our weekend activity will indicate.

This weekend was the first Doug and I have worshiped together in a church building in four months. Thanks to radio and the Internet we’ve experienced long-distant church worship here at home by listening to the church service of our home church on radio and by tuning in to services streamed over the Internet. During the in-church worship this weekend Doug introduced the new senior pastor of one of the Fort Worth churches. In the afternoon we visited with friends and stopped to spend time with my Mom.

It also seemed to me that this weekend Doug made up for much of what he’d not done around our home. He didn’t even take a nap Sunday before friends picked us up for our evening out.

What a treat to be together at the Morton H. Meyerson Symphony Center in Dallas regarded as one of the premier music halls in the nation. The architectural design and acoustics of the Meyerson are spectacular. If you have never been there in person it is worth your time to enlarge the prints at http://www.pcfandp.com/a/p/8103/s.html to view this amazing structure for yourself.

The Meyerson is home to the Dallas Symphony Orchestra, Turtle Creek Chorale and Dallas Wind Symphony. Sunday night Southwestern Adventist University provided university, high school, and academy students the opportunity to perform in this world-class concert hall. Three hundred young people filled the hall with band, woodwind, festival guitar and choir music. Doug and I got to hold hands and lap up the eye candy and the marvelous music which was performed flawlessly.

The program notes indicate that “A Night at the Meyerson” has been a tradition of Southwestern Adventist University’s Fine Arts Department for fifteen years. According to the University’s President the goal of having the evening is “to inspire young musicians and to provide scholarships and musical equipment for our music department.”

In addition to preparing their own university students, the dedicated music faculty schedule trips to the 16 other schools throughout the school year to prepare students for the yearly music festival in February.

This year as well as accompanying the choirs on the piano, Professor John Boyd opened the pipes of the majestic organ in a concert solo as well as really adding intensity to a couple of the band and choir numbers. Conductors Rudyard Dennis, Henry Welch, and David R. Anavitarte were as professional as any of the regulars that perform at the Meyerson. The behavior of the students was to our eyes impeccable.

Our date was perfect in every way!

~Carole

2-11-08, Part II

2008-02-19T11:21:00.000-08:00

We have been busy “chewing” on the document from Greece. We’ve shown the document to our family doctor, the doctors and nurse practitioner connected directly to Doug’s cancer treatment as well as our oncologist/hematologist friend not connected directly to Doug’s treatment. We didn’t want to start taking supplements in mass until we received clearance from Doug’s kidney doc and his oncologist/hematologist.

The kidney doc pulled one supplement (Rhodiola and Ginseng Complex). The oncologist said he had received the document from the alternative medicine clinic, looked at it yet couldn’t validate anything from a lab with which he had no connection. However because Doug’s over-all numbers are so good all he asked was that Doug take the nutritional supplements two-three hours before taking his chemo drug which he takes orally at bedtime. As it turns out the final supplements are scheduled to be taken with the last meal of the day which we usually eat by 5:30 or 6 p.m.

In the Greece lab they isolated Doug's malignant cells using “Oncoquick” with a membrane that isolates malignant cells from normal cells. Then they developed more than 41 cell cultures to which they added various nutritional supplements and chemo drugs. We have the report which includes those which worked to inhibit or kill Doug's cancer cells and those which do not. It is in a consistent language, the technicality of which I’ll spare you. What works in Doug’s blood is highlighted so we don’t have to plow through every detail.

Of significance is that Thalidomide (the chemo drug which Doug has taken since November 1st) worked the best to “inhibit and induce Doug’s cancer cell’s death but cannot induce the invasion activity of the cancer cells”. From the very beginning we have known that only the bone marrow transplant will wipe all cancer cells out—and then only for an unknown time period as this type of cancer is not one that can be taken out via surgery nor have they yet found a cure. He will have a better quality of life afterwards.

The report also included 5 other “options” of chemo therapy that would work for Doug, some less toxic than others and only one other that is covered by our insurance.

Of greatest value to us is the knowledge of those supplements that the cultures indicate would or would not impact Doug’s cancer cells and therefore gave us some informed direction.

While it would be impossible for the lab in Greece to test every supplement on the market today (as you’d know if you’ve been in a natural “food” store lately) I’ll give you a just a few examples of what did not show any impact on Doug’s cancer as per the Greece testing: Acai berry, Mangosteen (Xanthone), mistletoe, grape seed supreme, curcumin (turmeric), aloe vera extract, Echinacea, green tea extract, ascorbic acid (as in IV vitamin C), hydrogen peroxide (which we understand is given IV--Yikes!!!!), to name a few. The document also indicates that Doug’s cancer cells do not respond to hyperthermia or radiation.

Based upon the finding in Greece the doctors at the alternative clinic also eliminated the need for green fruit drinks, the need for a coffee enemas 1-2 times/wk when not on chemo, etc. etc. much of this and those in the above paragraph suggestions we’ve been given by others wanting to help by sharing what they have known to have worked on others with cancer.

The flip side is that several other supplements tested worked well enough to kill or at least slow the cancer cells activity anywhere from 15% to 45% within the culture. These, along with Thalidamide, are the ones we’ll focus on-- as well as those known through clinical trials and observation by the doctor’s at the alternative clinic to create cell health in the good cells damaged by the toxic treatments required for cancer treatment. Having this information has eliminated our need to act in panic, grab at anything someone suggests or to wonder if we did everything possible.

We are to notify the alternative clinic if Doug receives any new prescriptions or any new chemo drugs. They will monitor for compatibility. During the bone marrow transplant Doug will have to eliminate all supplements. The window of time for their use to build Doug up for that procedure is now.

Doug’s oncologist and kidney docs base their time of referral for his bone marrow transplant on his blood and urine chemistry. The time is right to begin that process. Doug has been referred for the initial consultation with Dr. Collins who heads the bone marrow transplant center at University of Texas Southwest Medical Center in Dallas. We have much to learn of what is ahead of us.

The good news is that, according to Doug’s oncologist, Doug has 1/10th of the cancer cells he had when he first began treatment. Maybe I mentioned that before but that fact is worth repeating. This is the reason why Doug has felt well enough most days these last two weeks to return to work part-time. PTL! He's in his office (or a committee :-) again this week.

~Carole

02-11-08, Part I

2008-02-12T07:10:00.000-08:00

We are amazed how many of you tell us you check this blog regularly. I hate the days I disappointment you! For that reason I am letting you know in two parts about our day, yesterday, the 11th of February.

We used an alarm to get up yesterday. That was different :-) Doug was in charge of the Monday morning worship in his office that starts at 8 a.m. Staff and administration gather to start the week off all together with the One they ask to guide them throughout the work week.

Doug was in his office everyday last week for a good portion of the work-day. He'd get out of his car and, to conserve energy, sat the majority of the day at his desk. Usually he is in charge of Monday worship once per month. He has not been able to do that or be there for the past four months. On Monday it was the first time he stood before his colleagues to share what he has learned so far on his journey with cancer. It was a moving experience for all of us who listened.

At the conclusion of their usual review of the weekend and prayers for specific churches, schools, teachers and pastors throughout Texas, the President asked everyone to form a circle around Doug for prayer, touching Doug as they did, praising the Lord for the healing that has taken place and asking the Lord to continue to be with both of us.

I was in the audience because we left from the office to go North to the clinic to receive the results of the report that had been faxed from the Genetic Cancer Centre in Greece. We were eager to find out Doug's specific DNA receptivity to both chemo drugs as well as food and nutritional supliments that would help with cell health.

The reason this blog is part I is because I now have to digest the 20 pages of that fax and what the Doctor in Dallas went over with us. In many ways is greek to us (pardon the pun!) until we can re-read it ourselves.

What we do know is that we see the nurphrologist this coming Friday and our oncologist next Monday. We will seek their counsel before taking any of the suppliments, not because we think anything that was recommended would harm Doug rather because 1) all together they are expensive and 2) we have also received a call from University of Texas Southwestern Medical Center. That is where Doug will begin the process leading to a stem cell/bone marrow transplant. Supplements are used to increase the immune system and build up Doug's cells. At one point in the transplant process the immune systsem needs to be taken down to zero which is done using heavy doses of chemo drugs. These are therefore two conflicting options if we base it on timing alone.

What we don't know for sure is this: what is the right time in respect to quality of life and longevity? We would covet your prayers that when we make a decision we will not look back and know that we evaluated our options, sought appropriate expert counsel and that Doug will have a sense of the Holy Spirit's leading him.

You can look for 02-11-08, Part II later this week. The report is facinating but I didn't take molecular medicine in grad school!! It was interpreted for us but not at my speed of learning....

~Carole

Stay Tuned

2008-02-05T17:53:00.000-08:00

Yesterday we did make the trip as scheduled to get Doug's results from Greece and the suggested treatment plan. Unfortunately there had been a mix-up between a staff member and the doctor in their office and Doug's report in its entirety was not ready. They tried to get in touch with us to tell us not to come but by the time they realized the problem we were almost there. It takes one and one-half hours travel time.

The doctor apologized, gave us a some indication of what he had only briefly scanned before our arrival but not enough for me to give you the big picture. The good part is that our oncologist will receive the same report and proposed treatment plan so we can check in with him in advance of making any decision. This delay gives the two of them time to connect with one another.

Even though the Doctor said he'd have the report ready for Doug today, we didn't want to make the trip again until next Monday. So stay tuned.

~Carole

Good News

2008-01-31T12:45:00.000-08:00

We had good news at Doug’s Oncologist’s office this week. He told Doug that based upon the numbers in his blood and urine chemistry 90% of his myeloma is gone. This needs to be measured against the fact that when diagnosed 75% of his bone marrow contained myeloma cells.

The dosage of the chemo therapy has been significantly reduced. Doug even went into his office for a few hours to do “real work” this week. Although the Oncologist indicates Doug should be able to work some (as long as he listens to his body) his family is a bit concerned and would err on the side of more caution. In spite of that fact we’ve decided to let Doug have some control over his own life. :-)

One thing we did to celebrate Doug’s improvement was to clear anything in our bedroom that looked like he has been/is sick. Yes, he still has cancer. Yes, he still has pain. Yes, he still is feels weak and therefore is short on stamina, especially on the one day per week he has the steroids that bind to his primary chemo drug.

Yes, the Oncologist is still talking about referring us to the transplant center for his stem cell harvest leading up to a bone marrow transplant. His immediate plan is to start giving Doug a monthly IV of a drug to strengthen his bones and reduce the chance of bone fracture. Myeloma cells wear away portions of bone leaving small holes called osteolytic lesions. These lesions can leave bones weak and fragile.

We have just today heard back from the other clinic about Doug’s blood work sent to Greece. We go to get the results and their treatment recommendations this coming Monday. Our Oncologist told us this week that he is willing to receive their information by fax to monitor any potential conflicting treatments. Now this is a direct answer to prayer as others of our friends in traditional medical practice didn’t give us much hope that any oncologist would want to be bothered. That makes us appreciate the one we have even more!

One of our friends who just learned of Doug’s battle called Doug this week and said he’d “storm the gates of heaven” on Doug’s behalf. There are days Doug feels satanic attacks. So don’t stop strom’in. But don’t forget to praise our Father also!!! We’ve come this far by faith, prayer, wonderful medical care and you, our family and friends.

~Carole

Greece

2008-01-24T09:38:00.000-08:00

While Doug was a pastor in Wenatchee, Washington he and several of the members of the church went with Pastor HMS Richards, Sr. on a tour of the Holy Lands. The group also toured Greece. My parents went on the trip with them. They brought back wonderful pictures to me, the mother of our infant son who seemed more important to me then a trip of a lifetime!!! At that time Doug never dreamed he’d return, in part, to Greece. Let me explain:

We left this week on Tuesday morning for an appointment we had at a medical center about one and a half hours from where we live. A friend went with us to take notes while we talked to
Dr. Ray Hammon, Jr. and Dr. Robert Gilbard about what their Alternative and Traditional Medical Center (ATMC) to see what they might be able to do for Doug’s cell health. While these doctors treat far more ailments and issues of aging than just cancer, we had heard they come along side a cancer patient to support cancer patients on chemotherapy and asses his/her overall lifestyle health so that once in remission or healed the cancer doesn’t reappear. Their experience supporting patients with cancer was our focus.

As we all know chemo kills good cells as well as cancerous ones. Doug is responding to the chemo protocol he is currently being given but we also are concerned about his inability to process foods to gain weight rather than to continue to loose. We both have a desire to see if anything could help to increase his stamina. We wanted to know if there was anything we were missing that the ATMC could do for Doug that would compliment his treatment.

We went with open minds with the intent to just listen. We had prayed that we’d be guided in our discussion with the doctors, would ask essential questions, avoid any pressure and would later make our own informed decision. We have received many other helpful ideas and suggestions but this is one we decided to explore.

The goal of this medical center is to treat the body, mind (emotions and belief) and spirit (spiritual involvement that appeals to the patient) of an individual which they believe is necessary for total healing. Since we, too, believed in body-mind-spirit whole health before going to visit with them*. We felt comfortable that we’d be able to sense authentic intent vs. we-need-your-money hocus-pocus.

*Note: there is a difference between believing something and doing it especially when one is confronted with a terminal illness and is caught up in survival mode.

During our 4 hour visit we learned about the doctors’ relationship with Dr. Papasotiriou Ioannis, MD who is the head of the Molecular Medicine department at the R.G. C. C. Research Genetic Cancer Centre in Greece. Even before you meet with them the staff at ATMC make it clear that they do not treat the disease cancer. They insist that Doug continue with his medical specialists. They are glad to consult directly with any provider; they are not a replacement for them. They come along side the patient to give supportive care. We liked the sound of that balance.

For the most efficient and effective supportive care they could give Doug they told us how they feel it is best if they know from the start what agents will attack his specific cancer cells, with chemo therapy as well as the natural agents they use. They also know that cancer cells are “smart cells” that can hide and/or build resistance to chemical of any sort if prolonged treatment becomes necessary. That is why knowing any agent the cancer cell resists is also helpful.

Thus, a “chemosensitivity assay” is what Dr. Ioannis provides for the ATMC doctors. Without it they would be giving Doug a “best guess” of what they have seen work on other patients in their clinic with similar cancer diagnosis. They suggest that in many instances what chemo drugs the oncologist is using is done with a probability based upon the latest findings from patients enrolled in clinical trials and reported in the literature. Their belief is that each individual’s DNA is unique and therefore a chemosensitivity assay for each patient will help both the patient’s own oncologist and those practicing integrative and functional medicine such as they target the cancer aggressively while at the same time specifically. The following sentences from their website explains chemosensitivity assay better than I can explain it.

“Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells and what natural agents might be used to support the patient during cancer therapy…Chemosensitivity assays predict tumor cell sensitivity, in other words which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life. Chemosensitivity assay has progressed to the point where it is 85-90 % effective.”

There was no pressure at all to run the Greece test. We were given as much time as we needed alone to make any and all decisions. We could have used their other services and let them guess what would work best with Doug’s type of cancer.

I’ll spare you more of the details but we did make the decision to have several tests run while at this clinic, not the least of which was to draw 25 ml of whole blood from Doug. Then Doug witnessed them as they added EDTA-ca as anti-coagulant then packed his blood in water ice packs and put it into a special container to express mail to Greece. Doug saw them seal the container and put his name on the shipping label.

This ATMC has a guaranteed delivery time with DHL to arrive in Greece no later than 36 hours. In addition, there is a confirmation system set up with DHL and Dr. Ioannis and the Texas doctors that assures delivery and documents arrival time.

We were given a sheet with the instructions to give to our bank with the information they would need to wire funds from our account directly to Pireus Bank in Greece for the fees in Eruos required by Dr. Ioannis’s (hear after referred to as Dr. PI). I did the wire at the exchange rate yesterday BEFORE the U.S. stock market “surged” upwards.…

After I did the wire I had to fax ATMC the paper work from our bank with the confirmation number from the wire. Communication both at the ATMC and with us about this process made us both feel very much at ease.

Dr. PI’s report will be returned e-mail to the Texas doctors. With that report along with Doug’s cancer case history they obtained from him--including all his lab work from on-set to our last draw here at our lab here in town, all his prescription medications and any supplements, all his previous health history, and the other two tests the Texas doctors did on Tuesday-- our next consult at ATMC we'll get the Texas doctor's recommendations. We will then share these with our oncologist and go from there.

We were told that the best way for us to work with them starting that day would be to evaluate our current lifestyle against the lifestyle they know gives balanced, functional, quality of life for anyone. Dr. Hammon gave us a document outlining the clinic's plan for having a balanced life.
(Dr. Hammon holds the copyright so please don't ask me for it :-) He calls Big Ten Plan, a "functional life style improvement" that if followed will assist in preventing disease as well as aid during a patient's treatment and afterwards.

Here is the document's table of contents:
"Introduction
You must think right
You must talk and act right
You must breath right
You must drink right
You must eat right
You must move right
You must poop right
You must play right
You must rest right
You must be happy spiritually.”
In Conclusion" [1]
[1] Dr. E. Ray Hammon, Jr., Dc. DNBHE, NMD, Clinic Director

I should probably also share the credentials of Dr. Robert Gilbard, MD, F.A.C.O.G. He is the Medical Director.

The entire how-to document was given to us with a goal of our using it as a guide to help us make small changes in any area we are currently neglecting--as fast as we can. He realizes that lifestyle is not something one changes over night. ATMC stands ready to help.

A few of the ten are not difficult for us to institute starting yesterday. Doug and I talked about the fact that following Dr. Hammon’s Big Ten Plan in certain areas may be as big or bigger challenge for us than fighting cancer…We’ve known the above since we could think for ourselves. But the American way is to make excuses for what one cannot do because of____________.

You may want to fill in your blank(s) as we fill in ours.
~Carole

Vacation

2008-01-21T13:37:00.000-08:00

I mentioned in a previous post that Doug was given a week of vacation from his chemo drugs? Last Monday Doug's doctor wanted to wait until he evaluated the results of the thyroid numbers before resuming the chemo. Doug's vacation was extended. He also had his physical therapy assessment with therapy to begin this coming week.

Saturday night the vacation from chemo ended. During this extended vacation and while on the fewest drugs to date, we had some false expectations that Doug would really be able to feel greater energy. We were, however, grateful for the few days Doug did feel a tiny “spark”.

The numbers of his last blood panel showed that his thyroid was in the normal range so that is not the lack-of-energy issue. We did learn that his white count was high enough so that with normal percautions we could get out of the house for short periods of time. That was special for both of us.

You know how after you’ve been on a 2-week vacation you dread going back to work and your daily activities? Doug was dreading the thought of having to return to his medical routine. He told me that at the same time he was eager to take the medications so he can get all of this behind him as soon as possible. For a change he'd rather be working than on a vacation!

Sunday he watched New England beat San Diego in the NFL play off game. I went to spend some time with my Mom. I came back in time to fix our evening meal and cheer for the Packers, not because I’m one of their life-long fans but because some of my extended family members are.

Just watching those adult men skid on the icy field in temperatures with a wind-chill factor in the minus 20 + range made me know that with determination men can do anything they put their mind too!

Doug is determined.

Kilcher stadium is full of your prayers, cards, and memories revisited in telephone conversations with “old” high school and college classmates. He’s being cheered on by former neighbors, former church members and his former students and faculty at the Seminary. He appreciates the support he feels from his professional colleagues while he’s “on the bench”. He feels the love of family and friends and from individuals he didn’t realize even knew his name.

Doug will win this challenge.

~Carole

Back to Work

2008-01-15T17:39:00.000-08:00

Doug got up and dressed in his professional clothes this morning. After breakfast he packed up his brief case and was determined to go to his office for “a couple of hours”. His caregiver did not encourage such a trip and even offered to drive him to and from. Doug, however, was determined to go by himself.

Letting go for me is not easy but for him his being controlled all the time isn’t easy either. I know that Doug’s work is as much an avocation as a vocation. It has been way too long for him to be away. He has missed his office family.

Soooooooooo I got my camera ready to take his picture as he got into his car. Instead he sat down in a chair. His mind was willing but his flesh was still weak.

For those of you who read my blog and are not acquainted with Doug’s work, he is one of the 4 administrators of the Texas Conference, the Adventist’s denomination’s state headquarters. The office is located about 20 minutes from where we live.

As a denominational headquarters it oversees the work of Adventist churches, pastors, and Adventist-run elementary and high schools. The geographical territory does not include the Texas pan handle and parts of West Texas. There are 40 thousands members of the Adventist church in Texas being ministered to in many languages by 200 pastors. The Conference also includes 22 schools and assists in the credentialing and training of their principals and teachers.

The 4 administrators meet regularly each week in what they call the “Officers Meeting”. Doug takes the minutes for those meetings.

It was advised that several of the employees at the Conference office were coughing, sneezing and blowing their noses so perhaps Doug would want to reconsider coming into the office for fear he’d catch something.

As it ended up Doug did go to work today. With the help of the Communication Director the free video conferencing system [referred to earlier in my blog] brought the four all together. Doug was in his home office and the three others 20 minutes away at the Conference office.

I could hear laughter ringing throughout the house. Doug was working but at the same time having fun with his colleagues. He did take minutes of the meeting with his fellow officers. He did dictate them to his Administrative Assistant.

When all was said and done, Doug saved energy—his own and his car’s--and lightened his carbon footprint.

~Carole

Weight Watchers

2008-01-14T16:07:00.000-08:00

Last Monday Dr. Mandell gave Doug what he called a “vacation” from the chemo drugs. He also changed the prescription we use if Doug gets any pain during the day. While Doug is not eager to stop the progress of his treatment he did look forward to getting a reprieve. The physician’s goal for stopping chemo for a week was to try to enhance Doug's level of energy and quality of life. Doug was also told he needs to regain some of his lost weight which will make him feel stronger. We went home to eat lots of calories.

Each day this past week we'd wake up hoping that something BIG was going to change in how Doug felt—especially as it concerned reduction in his fatigue and increase in his level of stamina.

I cooked up all sorts of calorie laden meals. I did good things like juiced vegetables to counteract his anemia and bolster his immune system. I also bought things at the grocery store that I haven’t allowed in the house since I became a card carrying, lifetime member of Weight Watchers.

Doug ate three big-for-him meals each day as well as one or two smoothies I crammed everything into. I’m talking some type of protein such as Ensure plus protein or Boost with protein or tofu or whey. Sometimes I combined several proteins within the same smoothie. I also added flaxseed oil, wheat germ, half-n-half or whole milk, frozen or fresh fruit. I always added banana and topped it off with ice cream or sherbet depending on the flavor because cold smoothies taste better!

Today at our weekly visit the medical assistant put Doug on their scales as per usual. He lost another pound. She didn’t weigh me but I weighed myself this morning. I gained 5 pounds!

So today one of our topics of discussion with the nurse practitioner and later with Dr. Mandell was why isn't Doug gaining when his appitite is good? They gave us all sorts of suggestions not the least of which is that Doug has tremors and that his shivers eat up calories. That is why he is weak.

Doug told them he felt his shaking is due to one of the medications for pain. Regardless of the reason he has been told he must eat more food and more calories.

I asked if in the blood chemistry they had ever checked his thyroid levels. They said that was a good question and the answer was no they hadn’t.

That got them to thinking that since Doug’s appetite didn’t increase even when on two different steroids at the same time there could be a second thing going on within his system. They will look at the blood chemistry this week with his thyroid in mind.

We won’t get the results back from the blood test until later this week. If it is his thyroid, according to them it will be easy to “fix". If it is his thyroid I’m going to take the credit for identifying this part of his dis-ease and sign up for medical school!!!

Doug did walk around the circle that is our cul-de-sac Friday and Saturday and on Sunday we went the length of one block. Today after Doug's doctor appointment we stopped at the grocery store to get buttermilk and anything else that looked good and fattening to Doug. They are ordering some physical therapy for him and not returning him to the chemo drugs until they review his blood results mid-week.

I came home and unearthed my Weight Watcher’s notes. I must use self-control and not eat everything I fix for him. Today at the grocery store I purposely didn’t buy the flavor of ice cream I like best.

~Carole

The Caregiver

2008-01-11T14:17:00.000-08:00

Some of you have asked, “What are you [Carole] doing to take care of the caregiver?” I thought I should let you in on one of the things I do. At least once a month I get a message. I don’t take this spousal benefit on Doug’s insurance plan for granted.

This past month the woman I go to moved her studio from the country to the city. If she was not such a good masseuse I would look closer to home for another therapist. The new studio is where I’ve never been before. The issue with that is that I have no sense of direction. None.

I grew up in rural township with no even one stop light. In the years since I’ve moved from my hometown there are now two intersections that have installed one stop light each. That’s a big deal!

After Doug graduated from seminary we moved to Los Angeles. I was in shock. I couldn’t even tell where one city ended and the other began. There were way too many stop lights and, worst of all, freeways leading in all sorts of directions. At the time we didn’t have children so I will admit that I became co-dependent on Doug for transportation.

I’m a visual learner (and that doesn’t include maps!). If you tell me to go North, South, East or West, I have not a clue what to do even when the sun is setting. If you say go 4 miles and turn right by the white church across from McDonalds, I’m with you.

I also learned that I have less anxiety when traveling on side streets rather than on major freeways. I’ve gotten by driving that way everywhere we’ve lived that has required freeway driving. Today we live on the fringe of one of the largest metropolitan areas in the United States. I've managed to avoid freeway driving by staying with the familiar and comfortable for me.

I’ve only had my GPS driving companion since Doug was diagnosed with cancer. I'm still not sure just how much I can really venture out and turst that voice within it. I am still more comfortable with what I'm use to using--a computer map program.

So in preparation for my massage today I used the advanced options for dummies on the computer map program and saw the new studio was accessable via the back roads and was not far from a large shopping mall with which I had geographic familiarity! So map program with turn-by-turn instruction in hand I headed out into areas with which I was familiar.

Using the 'back way' to my massage I did drive past people who probably didn’t have breakfast this morning much less would not have even considered been able to have the healing hands of a massage therapist placed on them. You don't notice people like that as much going 65 mph along a freeway.

On the way home from my appointment (which I made on time and felt better for), I wanted to go the back roads the way I had come. That was wishful thinking on my part. I had not done reverse directions on the map program.

Even though I was probably only a few block from the massage studio I made one wrong turn. One mistake. I was lost.

So I pulled into a parking spot and turned on my GPS. I went into my “favorites” and selected “home”. I knew that, like it or not, I had to do what the voice inside told me to do. It was now a matter of faith and trust in her to get me back home.

Why am I admitting this? Because what I learned today was the need to trust and have faith in a voice of a person that I can not see. It’s a voice of a woman I have never met. She gave me no choice. I had to merge onto a busy freeway. In the end it was a much shorter, direct route.

Doug and I are on a journey. We have never been this way before. Some days it seems we are lost. But we have made a choice to trust and have faith in God’s Precious Son, the ultimate Caregiver whom we can not see but a voice we’ve become familiar with in the past. We believe He is guiding our doctors and the others with whom we are seeking medical counsel. With multiple myeloma there is no other way.

At least that is how we see it from our perspective.

~Carole

New

2008-01-05T15:06:00.000-08:00

(2008, that's new)

It’s been awhile since I’ve blogged. Some weeks are easier than others to find the right words. I know many of you look frequently for something new. So here it is.

Yesterday I took Doug to have another X-ray of his lungs. I picked up a copy of the films to take to the doctor on Monday but also for the home health RN to see. He came today, read them, and sees little evidence of pneumonia. For that we are very encouraged. I could have told you that too but it is more impressive from a R.N./D.C. I was shown the X-rays taken in the ER during our last visit. The contrast is amazing.

The measure of Doug's O2 level was 94%, was reduced when walking but rebounded at a good rate when he sat down again. We must be dealing the a medication side effect or anemia as fatigue and lack of energy are the two biggest battles we've been fighting this week. Doug stays in bed most of the day and all night.

We had a slight fever scare last evening. Ice makers on refrigerators are another blessing not to be taken forgranted during times like these. This morning his temp. was in the normal range. We see the hematologist/oncologist on Monday and hope to find some encouragement related to his lack of energy.

Kevin left Wednesday after checking off the last thing on his to do list for us. We were sad to see him go but glad he felt we were stable enough for him to return to his work and life in New York. We will never be as far away from him again either. Let me explain.

We have a new Livie!Cam by Creative that, according to the packaging material, allows us to have “life like video, clear voice and fun effects” over the Internet. I’m not promoting product as there are many out there. I’m just sharing what we have. Then Kevin downloaded the free version of “SightSpeed” from http://www.sightspeed.com/ Once we purchased the camera everything else was free!! Yes, we could pay more and do more but we just needed the basics.

Doug’s home office (that I get to share) is a desktop P.C. that uses a Windows operating system. The video camera on our computer is one that just fits over the monitor and is hooked into a USB port. The speaker is built into the camera. The whole deal is about the size of the palm of my hand. The “eye” of the camera can rotate up or down.

Kevin had his Mac Book laptop along with him. It has a built in camera and microphone. When we were all set up, Kevin and Doug sat in the family room and we took our first test-drive with me at the office computer in another area of our home. It was awesome! It was seeing and believing first hand.

The real test came the morning after Kevin left. He called from his apartment in New York to tell us he had arrived home safely and said, “Let’s video conference to see how this works at a distance.” We hung up the phone and went into the computer. Clicked on the SightSpeed icon short cut Kevin had set up for us and clicked on his name in our “friends” list. It rings with a sound similar to a telephone on our end. When Kevin picked up in New York City we could see him and hear him loud and clear with no distortion. Laura was busy in the kitchen. She came to say hi. Doug sat in the computer chair and I was standing behind him. The kids could see both of us and we both of them. We also got to see our “grand-cat”, Rusty, when Kevin held him right up to his camera. That is a very NEW experience being able to drop into our kids home and not have to travel.

Because the lap top is portable, Kevin took us on a tour of their apartment. We could even see their view of the city from their picture window.

Now many of you reading this blog will think this is no big deal. Some of you have been video conferencing over the Internet with your kids and grandkids for free since you learned you could. I’ve done it before too but there was so much distortion and delay that it wasn’t worth my time. I was use to the ones at the Intermediate school districts, in public schools or the State of Nebraska's Communication department and the Adventist Distance Learning systems, ones I’d used professionally. They cost a lot just to “rent” time. It really wasn't a fair comparison. As technology has changed so has the quality for home-to-home and office-to-office sharing. We do have digital broad band connection to the Internet here at home. I realize that is an important variable.

As we begin a new year Doug and I have some new resolutions. We have resolved to keep our family close even though the children live on opposite coasts. Our new computer camera will certainly assist with that resolve. We are going to work with Kristi to get hers set up now that we know how it all works. We also hope that in spite of his compromised immune system Doug might be able to return to work this way if only by video and teleconferencing. We are determined to not let cancer control us but in every way we are able with medical science’s assistance and God’s help, control the cancer.

To that end we wish you and yours a happy New year.
Our faith is strong. That is NOT new.

~Carole

Hair

2007-12-30T17:32:00.000-08:00

When we had our Snoodle (a dog that is part Schnauzer; part Poodle) named Riley a mobile groomer came periodically to our home. I would put Riley on a leash and the groomer would take him to her self-contained vehicle set up to wash and cut his hair.

When the groomer was finished with Riley she would return him to me smelling fresh and clean. He always had a new, colorful boy-dog bandanna tied around his neck. Girl-dogs got ribbons in their hair.

I'd pay the groomer-lady on our door step. Riley avoided having to stay in a wire cage for the long wait until his turn at a pet grooming shop or until his owner came to pick him up. I didn't have to take him, leave him, and drive back to get him. It was a win-win situation for all three of us.

Because Doug has been bed-ridden for some time he hasn't been able to go to his groomer. Usually he has his hair cut every few weeks to get his hair so it lays just so. In the hospital there was no mobile groomer. No one offered to wash or trim his hair. Besides have you ever had your hair washed in bed?

So today he not only showered and washed his hair. Kevin and I played "barber". The fact that he let us shows he is getting better but still is not well!!

I started first very cautiously. Kevin came in to inspect and took over. After all he has had more experience with men's hair than I have. My role was to work the vacuum cleaner, something I do have experience with. It was a team effort.

Having hair on his head needing to be cut while under going cancer treatment is not something Doug or his family has taken for granted. It was a real pleasure for us to see hair fall on the floor while some remained on his head.

He, however, refused the boy-bandanna for his neck!

~Carole

He's Home

2007-12-29T16:51:00.000-08:00

Have you ever slept in someone else's bed for 10 days and nights? If so you know how happy Doug was to sleep in his own bed in his own room with no one coming in to wake him up to ask how he feels and to take his "vital" signs to see if he is still alive. Who thought that idea up anyway?

Kevin and I went to the hospital around 8 p.m. to gather up Doug and his personal belongings and to wait until the discharge nurse put together all the paper work. The time between when one knows one is going to be able to go home and when one is actually discharged gives another meaning to the word patient. Doug knew yesterday morning that he was going to be able to go home that day. He was escorted to our car by the hospital staff at 8:45 last night.

Kevin took his dad home to settle in and I went to the pharmacy to get the 2 new prescriptions filled.

All Friday, in preparation for Doug's arrival, I had scrubbed, dusted, vacuumed rugs, bleached sinks, wiped down door knobs with Clorox wipes, disinfected counters, and felt a lot like Bridgette!! By 11:00 p.m. I had distributed his new medications and tucked him in for a night of uninterrupted sleep.

This morning the phone rang. It was a nurse from the home health agency that has been assigned to help. It was a male voice who indicated that he had been asked to come to visit us today to admit Doug into the program and do the initial evaluation. I was thrilled it was a male nurse. There is just something about man-to-man communication that I cannot provide!!!

He arrived in the afternoon as planned, paper work and computer in hand. Would you believe he is both an R.N. and a D.C. as in Registered Nurse and Doctor of Chiropractic medicine? Talk about blessings. He sees patients in his office as a D.C. week days and works part-time for the home health agency as an R.N. He was on-call this weekend and told us he will be Doug's case manager.

He ordered a physical therapy consult from their agency as well which will help Doug get back on his feet. It was music to my ears to hear one of the goals of home health is to provide services in our home that will prevent Doug from having to return to the emergency room or to sleep in someone else's bed at a hospital anytime soon.

~Carole
PS The Christmas tree is now a New Year tree. It sits on the window seat in our bedroom to remind Doug of the reason he needs to do what his Oncologist/Hematologist, his R.N./D.C., P.T.--and wife (Mrs./M.A.)-- tells him to keep him from having to return to the hospital in 2008!!!

O Christmas Tree

2007-12-27T15:02:00.000-08:00

December 25 at the hospital.

We’ve had a lot of sympathy (and some empathy) for Doug having to be in the hospital at Christmas time. If you think about it there are worse places that he could have been: in a homeless shelter, in a country at war, in prison, or maybe even in a home where love has been lost.

Yes, Doug was disappointed that he wasn’t well enough to go home. He had plans for what we’d do while the kids were here. Yes, the kids and I were disappointed too but we did our best to make lemonade out of a lemon. Love was not lost!

Some of our friends felt that if Doug had to be in the hospital during Christmas that he must have a Christmas tree in his room. As I understand it the Christmas tree as part of the season’s celebration was brought over to America by German immigrants. Table top Christmas trees were the first ones Americans used.

The fun began when we realized that the tree could be decorated with all manner of medical items being used in Doug’s treatment. Add to that the fact that the trays from dietary added some charm as well. Some of the gifts below the tree ENSURE he'll be coming home soon. You’d really have to view it up close and personal to get the full benefit!

The night before, Christmas Eve, the kids had made up some holiday gift bags. We gave them to anyone who came into care for Doug Christmas day. We also visited the man who Kevin had noted didn’t have many, if any, visitors. He broke into a smile and said, “You have really lifted my spirits.”

We called the family members who were not able to be with us. Many of our extended family called us. After Christmas dinner Doug and I were given another gift of love that is indescribable. In an act of unselfishness on both of their parts, Laura returned to New York alone because she had to work the day after Christmas. Our son Kevin is staying by to help me with Doug until we are both stabilized again.

Kevin is able to continue working in Texas as his craft is done over the Internet. He is a web programmer/designer working on client contracts while the writers strike for film and television remains halting most all production including his work as a cinematographer.

Doug took steps with the physical therapist yesterday (December 26). It is our first sign that his X-rays (for pneumonia) are getting better and better. I better go vacuum the red carpet.

~Carole

Christmas Morning

2007-12-25T06:07:00.000-08:00

December 25

Its Christmas morning and I haven’t called or gone to see Doug yet. I have to tell you that I’m very glad no one has called me from the hospital either. That means I have much to be thankful for this Christmas morning. My husband and best friend of 39 years is alive.

If you happen to have a significant other and are so busy ‘doing’ life you don't have time 'being’ together you don’t want to wait until one of you is in a hospital to realize their importance to you. Tell them every day that you love them. More than that make them know they are your first prioity. As you consider 2008 ask yourself if your work (and the time you spend at it) is more or less important that the ones you love.

On Christmas Eve there were 27 patients-one of which was my husband-on the fourth floor who will be spending Christmas day in this hospital. Our son suggested that he noticed that one man in a room adjacent to his Dad’s room has not had visitors this week except the people on the television which he watches all day long. Our kids want to do something for him today. We’ll take a few things to Doug and the nurses, techs and housekeepers too. I’ll let you know how it goes.

Last year Kevin and Laura suggested that instead of purchasing gifts for them that their relatives give what they would spend on them to a charity of the relative's choice. They would do the same and not mail gifts to us. This year Kristi needed two new tires or funds to assist her in the gift of health at the health club. It has been satisfying for us to see our adult children grow in their sense of what is truly important to them.

I spent one Christmas in the hospital. I told Doug this Christmas it is his turn. We'd both rather have him be home. But the menu for patients and in the cafeteria (I think) looks like a full compliment of a Christmas dinner. I’m thrilled. I don’t have to cook!!!!

That’s another unexpected gift.

~Carole

Personal Space

2007-12-25T05:54:00.000-08:00

December 23

If you’ve ever been hospitalized or stayed to visit any length of time in a hospital, you’ll know what I’m talking about when I say having a small private room is preferable to one that is shared with another sick person. It’s hard enough to deal with the interruptions of your own medical staff and visitors. Not that sharing isn’t a good thing….

When one is sick having personal space aids in the healing process if only psychologically. This hospital opted for private rooms when it was built.

When Doug was transferred from ER to his room on the 4th floor he told the first nurse who knocked on his door, “Welcome to my closet”. Doug wasn’t complaining, he was making his own observation. He also had a high fever!

He asked me if the room had a bathroom. It did but it was behind him as he lay in bed. His bed faced away from the small window and filled the length of the room. The doors into both the bathroom behind him and into the hallway in front of him barely cleared so the doors could open. He felt his feet were sticking out in the hallway!

There was one very large chair in front of the window Doug couldn't see and one straight chair by a closet for his personal things. There was a small 3-drawer chest with the Gideon Bible and the phone on top located to one side of his bed and a bedside service area needed for personal care and for when the food tray was delivered.

We would learn later that the bed was brand new (and thus longer) and that this particular floor had just been remodeled with new paint on the walls, new flooring and a bathroom as nice as on any cruise ship we’ve been on. The room soon became our home away from home.

When the kids from New York arrived on Friday we couldn’t fit another chair into the room. I sat on the side of the bed; one of us stood, or in the case of the kids sat on one another’s lap. Someone up above fixed the space problem for us--unexpectedly.

On Saturday I went into the bathroom and there was water on the floor. I won’t tell you what my first thoughts were….but when I reached for a wash cloth to take to Doug, the cloth was already wet. The two wash cloths and two towels hanging over the towel bar were soaked with water. I looked on the wall above them and water was cascading behind the water-proof paint which was trying its hardest to hold the water back and not let it break through. This gave me a clue that I needed to alert someone right away.

You’ve never seen people move into action as fast as the staff did to remove Doug from that room. In matters of minutes he was in a wheel chair with IV pole and me following. He was wheeled down the hall and into the largest hospital room we have ever seen. It has three windows, one which Doug can look out of from his bed and I can look out from “my” recliner. Another adjacent window lets streams of sunshine in that as long as the shades are adjusted so the light doesn’t hit any of his IV bags the sunshine really lifts Doug’s spirits.

From Doug's bed, he can’t even see the door into the hallway. There is a jog in the wall that is almost like a sitting room one would have in a home. There are three movable chairs and one two-person couch. It is awesome!

And for the record, Bridgette doesn’t work on 5th floor yet!!!! It’s under remodel and no patients or medical staff is housed there during construction. We’ll never know who left the water running or what plumber didn't tighten something on the 5th floor tight enough. What we do know is that one family has more space in which to spend Christmas in the hospital Christmas Eve and Christmas day. We’ve logged another lesson about the way that God provides in unexpected ways.

~Carole

Bridgette

2007-12-23T07:09:00.000-08:00

(If you haven’t read “the procedure” read that first or this post will not make as much sense.)

Friday morning after they had taken Doug to x-ray for his procedure I was left alone in his room—or thought I was at the time. My reserves were down. The previous night at home alone was one of my most vulnerable times for discouragement. I’m not proud. I was tired. I had tears in my eyes after I kissed Doug good-bye.

Then she came in. Green scrubs, blue gloves, spray bottle and mop in hand. She excused herself and said she was there to tidy Doug’s room. She stopped, looked me straight in the eye and said, “Honey, you look worried. He’ll be fine. We don’t let any negative thoughts be up on this floor. He’ll be fine! We are all praying ‘fools’ up here”.

I learned her name was Bridgett. She grew up in Germany. I asked her about her faith and how she became a “praying fool”. She told me that in Germany you are either Catholic or Protestant and that she was Protestant but it wasn’t until she came to America that the Baptists really socked it into her. She told me she doesn’t really attend any church regularly because she has to work.

She said, “I don’t work two jobs because I’m pretty.” When she gets done at the hospital she works nights at Baptist Theological Seminary (in Fort Worth). Her house is a mess and she needs money to fix it up. She knows the Lord will provide if she if faithful to Him.

(Note: all this time she is cleaning!)

Bridgette: “Honey, I don’t know all the Scriptures but I know this one. When two are gathered in my name, I’m there with ‘um. Sooooooo I’m here. You’re there. That’s 2 aint it? So God is here. You just claim that because I have. I tell that to my patients all the time.

“I’ve worked here 14 years and 98 percents of my patients go home. Some even come back looking for me showing their numbers and that the cancer is all gone. Then we have a big group hug. Imagine. Me. I’m just a cleaning lady.”

Carole: “No Bridgett, you are not just a cleaning lady. The Lord knew I needed you at this very moment. You have ministered to me in a way He knew I needed you. You could have been cleaning someone else’s room down the hall.”

Bridgette: “Now when I start talking about God I can’t stop. But then I don’t get my work done so I better finish up. But don’t give your negative thoughts over to the devil. That ‘ol ‘dip stick’ is going to get his butt kicked real soon and he’s out to discourage anyone he can. I won’t let him at me. I don’t just ask him to please leave me alone. I don’t say get away from me. I COMMAND him to get the hell out of my presence—excuse my language but that is where he’s headed anyway. I’m just a housekeeper but I’m here to claim healing for all my patients. It sure isn’t the money. I pray for each one on this floor every night. Now I don’t remember all their names but I reason that He does (points to the ceiling) and that’s Who matters. Your man is a good man and God needs Him too. I’ve gotta go. Just call Bridgette if you need me. I’ll be around here all day.”

Just a cleaning lady? Just a housekeeper? Not by God’s standard. Not by mine either!

~Carole

The "Procedure"

2007-12-23T06:27:00.000-08:00

I’m late letting you know what Doug has been dealing with but being with Doug at the hospital takes me away from my computer. Here is an update from Friday, December 21:

I arrived at the hospital in time to have prayer and kiss Doug before his “procedure”. Doug was told late the night before (after I had already left for the eveninig) that because he was not responding to the antibiotics, they needed to pass a bronchoscope down into his lungs to take samples to culture.

The camera goes through the nose, down into the esophagus into the lungs. It is done by a lung specialist in X-ray. At least that is how I understood/understand it. Doug feels nothing as his passage ways are numbed and then he is put “under” like when you have a colonoscopy so that day you don’t remember it even happened. (To be frank some of this passes right over my head so you medical people please forgive.) But I have had a colonoscopy so that part is VERY clear to me!!! I was to wait in his room so the surgeon could speak to me after it was over.

It took about an hour from when the nurse took Doug from the room to when he came back. The procedure was to have taken only half of that time as I understood it from the nurse. I was told Doug wouldn't know what had happened most of Friday. I was to watch him to be sure he didn't try to get up alone, etc. etc.

We won’t know the final results of the cultures of the samples they took from his lungs until Monday, Christmas Eve. If the finding is, as they suspect now it will be nothing more serious than pneumonia it will be a wonderful Christmas present. (Pneumonia is serious enough.) Meanwhile they treat him with inhalation therapy and serious antibiotics through his IV. He has been fever-free for the last 48 hours so that is encouraging.

Saturday the pulmonary specialist who stopped on rounds in the afternoon told Doug the Saturday morning x-ray looked better than the original so some response is occurring. Preliminary report is that they found no tumor, no tuberculosis and the cultures will give them a more clear understanding.

I’ve asked if it is contagious and he said that if it were the lab would probably have called by now! It is more common with immune compromised cancer patients.

Doug is on oxygen. I think he’d want me to tell you to not take your lungs or ability to walk and breathe at the same time for granted. I have taken mine forgranted I'm confessing up until now watching my husband’s struggle.

The gifts under your Christmas tree are nothing by comparison to the gift of life. Give thanks right now for your two lungs and your ability to breathe without even thinking about it.

~Carole

Pneumonia

2007-12-20T07:01:00.000-08:00

We spent most of yesterday (Tuesday) in the emergency room. Doug had been having high fever, chills, and dizziness that the oncologist was treating as a viral infection with an oral antibiotic. Due to its non-effect on the symptoms after a long enough period of time, we were sent for a “work up” at the emergency room.

I read to him for 5-6 hours as the many tests were run. X-rays showed a type of pneumonia that medical personnel had not heard in Doug’s lungs or back, including the E.R. physician. When I asked the E.R. physician about why it can’t be “heard” as congestion he smiles and said, “That is the problem. Not everything in medicine goes by the textbook.” I thought about that as it parallels life. Not everything goes how we think or even plan it should go….

Doug was then admitted to the hospital for treatment they can only do in the hospital. Before I left him that night he was feeling so much better he said, “It feels like a switch was flipped to the on position!” That is what I admire about Doug. He is always thinking positive because my witness was that he was feeling about as bad as he has ever felt since contracting this disease.

We know that with cancer hospitals are equipped to care for these unexpected interruptions better than I am equipped to care for him at home!!! So while I hated to kiss him good night there, I know it is for the best and he’ll be returning soon. Knowing that Christmas is coming and most hospitals want to rid themselves of as many patients as possible, I don’t expect him to be there long. Our kids from New York will be here this weekend.

I am requesting no visitors at this time and appreciate your continued support and prayers.
~Carole

The Unexpected

2007-12-11T18:09:00.000-08:00

Yesterday, Monday, was Doug’s day to have his blood chemistry evaluated again by Dr. Mandell. One of the blessings we count is that Doug has very prominent veins from which to take blood especially now that he has lost weight. Facing a blood drawing is not a big deal for him.

It is amazing to us how the phlebotomist can draw the vials of blood from Doug and, thanks to computer and medical science, 15-20 minutes later a preliminary report is in Doug’s physician’s hands so he can advise us and make any adjustments in Doug’s treatment protocol.

In ways I don’t understand the blood chemistry is also sent from our Center at Huguley in Fort Worth to Dallas for additional evaluation. Within 24 hours a much fuller report is electronically sent back for Doug’s doctor and his records. I get a copy, too, and file all his lab reports in our notebook. We are just now learning how to read them to be able to see Doug’s progress!!

The news I want to share with you is that for the first time since probably even before July and his first hospitalization on Monday Doug’s white blood cells, his red blood cells and his hemoglobin are ALL in the normal range. This is huge for us! We want you who have told us you are praying for Doug to please give thanks to God for this important milestone.

After we left the Center we had prayer together in our car. To show you how excited Doug was, on our way home Doug asked his driver—me!—if she would stop at the grocery store. It was so fun to see him walking (albeit slowly) through pushing the cart through the aisles gathering a few things that just sounded tasty to him.

One thing Dr. Mandell wants to do to confront Doug’s weakness is to readjust some of the strength’s of the pain and primary medications. During the visit he had me delete 3 prescriptions from our routine. None were the pain or chemo drugs. But elimination any prescription drug is another huge thing for us! Let me tell you why.

Each doctor in the hospital prescribed what Doug needed to “slam” the myeloma. During his hospitalizations he had three physicians. Upon discharge we had 14 different prescriptions in bottles lined up on our dresser. My job is to distribute the medications to Doug as prescribed. That is why—thanks to a friend and former home health nurse—I have to chart and each time I give him a pill, I mark it on the chart. The BIG news is that as of yesterday we are down from those14 different bottles of pills to just 6 different medications bottles!!!!

Today, Tuesday, we did some of the readjusting that Dr. Mandell suggested to us yesterday. We haven’t had a good day. He told us to try something different tomorrow. Eventually we’ll hit on what a balance is for Doug.

Regardless of the slight set-back today, we are encouraged. We’ve been told by one who has gone before us to get use to the unexpected being the norm. We are not out of the woods but we may be out of the jungle.

I went to bed with a smile on my face last night. ~Carole

The Gift of Song

2007-12-11T18:02:00.001-08:00

Music means so much to Doug and me. I’ve had the privilege of singing with the Healing Heart choir under the direction of David Anavatarte, the Chair of the Music Department at Southwestern Adventist University. Healing Heart’s Sponsor is Huguley Hospital, the Adventist hospital here in Burleson, Texas. Dr. John Boyd, one of the other talented music faculty at Southwestern plays keyboard with us in concert and Mystro Anavatarte leads from the grand piano.

Since October I haven’t been able to attend choir practice. On my personal calendar of the choir’s schedule for the year, I remembered that they were going to be singing at the Burleson church last Saturday 10 minutes from our home. Usually Doug and I listen to the Keene church service which is aired over the radio.

Friday night I told Doug that if we got everything done for him that was needed I would like to go for the hour to hear Healing Heart sing. (Think sing with them from my pew!) He encouraged it and I did wake up earlier than usual. I was blessed by the choir’s music during the service and Pastor Larry’s homily.

The choir members left after church to have lunch at the hospital as well as to sing Christmas carols in the halls of the hospital. I returned home to fix our lunch which friends had sent over special for us. What I didn’t know was that the choir would end up outside our home to sing Christmas carols as a surprise for Doug and Carole!

Thanks Healing Heart for playing a role in healing our hearts….
~Carole

Kilchers Konnecting

2007-12-08T18:46:00.000-08:00

Doug and I want to use this blog to thank all of you for the outpouring of love we have received since his illness has been made public. Your cards, telephone messages, gifts of hope and peace, food, plants, balloons, music, e-mails and prayers play a role in Doug’s healing process.

A friend once painted a word picture that has stayed with me. She called to ask me if I’d be part of a prayer quilt for a particular individual. Now it is our turn to feel a quilt of your prayers wrapped around us. Each square in the quilt has your name—or in some cases, the name of your church or your Bible Study group—on it. We wish it were possible to thank you all personally. Through this blog we hope to keep you updated and let you know how much we appreciate you and what God is doing for us.

The "C" Word Hits Home
As most of you know Doug has been diagnosed and is being treated for multiple myeloma, a cancer that involves the body’s blood-forming systems. Cancerous plasma cells (myeloma cells) build up in the bone marrow and in his case also impede the blood producing/filtering of his renal system. We have learned that the multiplication or overgrowth of malignant cells in the bone marrow can weaken the bones, especially in the back and ribs, and cause pain and bone fractures. We praise the Lord that he has no bone fractures. His presenting problem has been excruciating, immobilizing pain, weakness and total lack of energy.

To be honest with you we had never heard of this type of cancer before his diagnosis. With every week that has passed since his diagnosis was confirmed on October 18, we continue to learn more about the disease and hear from more people who have the disease willing to share their story with us.

History—His Story
This summer Doug had not been feeling well. He had talked with me about the pain he was having in his ribs and back but he thought he had pulled a muscle and that with time it would heal and go away. He has an amazing ability to push himself so carried on his work as if nothing was wrong—until he got home at night and then collapsed into bed with no energy to spare.

Early in July he was in charge of overseeing the details of the training weekend for the new Executive Committee of the Texas Conference. Eventually he could no longer hide that something was seriously wrong. He was absent from meetings he was to be hosting!

His leadership team advised him to go to the emergency room (ER) near our home rather than to the local hospital in the town where the retreat was being held just in case he would need to be admitted. We were driven home late that night by our Ministerial Secretary. The next day Doug was hospitalized with what was thought to be renal failure due to dehydration. After being re-hydrated intravenously he was sent home with instruction to drink lots of fluids.

He returned to his normal, busy schedule. By October signs of his pain were increasing. He still pushed himself and kept a smile on his face but I knew something was drastically wrong. He was loosing weight and muscle. I felt I was loosing him.

I went to his office and told him and his boss I was taking him home—to the ER at Harris Methodist Medical Center in Fort Worth. Within just a few hours the ER doctors gave a preliminary diagnosis of Multiple Myeloma.

Earlier that same day 29 pages of lab reports of Doug’s history were obtained from Doug’s primary physician and faxed to Dr. Neal Nedley, an Internist in Oklahoma. While Doug was still in the ER, and without having any contacts with the doctors at Harris hospital’s ER, Dr. Nedley told Doug that if Doug was his patient he’d want to rule out multiple myeloma or some form of lukemia. The myeloma would explain his renal failure.

Doug was admitted for further testing. On October 18, my mother's 92nd birthday, it was confirmed that Doug had multiple myeloma in an advanced stage. We began the treatment to slow or stop the growth of cancer cells.

On November 7 Doug returned to Harris Hospital for a 7 day stay for pain management. He was unable to get out of bed at home on his own due to excruciating pain. As of last week we are grateful to the Master Physician and medical science as his pain is now under control.

Treatment Protocol
The treatment protocol for Doug is what people in the medical field who know about this type of cancer call “state of the art”. It involves heavy does of Dexamethasone, a steroid that works in combination with the drug Thalidomide. Both are taken orally. Doug has only had one series of 4 IV chemo injections of two other drugs and, at least for now, will not need an IV port. His hair has thinned but he still has hair!!!!

After the treatment protocol was described to us we did seek another opinion from an oncologist. Registered nurses on our oncology floor recommended this particular doctor as being the one they would use were they to contract cancer. She practices independent of the others on Doug’s case. The doctor visited with us before Doug was discharged from the hospital in November and agreed that the treatment he is receiving is what she, too, would use were Doug her patient. She just recommended a blood thinner to avoid clotting, a serious side effect of Thalidomide. That medication was added by our doctor and joined the numerous other medications to ward off side effects.

I also am fortunate to be able to contact my roommate from boarding academy, Dr. Geni Bennetts, an oncologist/hematologist, now retired, but one who keeps up with the literature in her field and attends medical meetings. She has been most helpful to confirm or clarify when I’ve need reassurance.

The good news is that all of Doug’s medications are taken orally and so far his digestive track has tolerated it well. He receives injections at The Center for Cancer and Blood Disorders as needed. I have become his drug warden and home health nurse!

We go to The Center every Monday for lab and monitoring of his blood and urine chemistry. We see Dr. Mandell, his hematologist/oncologist, every other week. His nephrologist (kidney doctor) is seen less frequently but is kept informed by Dr. Mandell.

Current Status
Doug never has complained. He is easy to care for. We are both so grateful for the reduction in his pain. What he lacks now is energy. He is very weak. We understand that the steroids sap him of energy leaving him with little desire to do anything but lie down and be in silence. His appetite has improved and we are enjoying more meals together. Now my goal is to fatten him up while keeping myself slim!

His immune system is compromised and we have limited visitors because of that fact. My prayer is that I will not become ill so that I can continue to care for him. Infection is something we have to be very careful of—especially this time of the year with colds and flu.

We just read together a chapter on Patience—“Faith in the Timing of God” in Gavin Anthony’s book, The Refiner’s Fire. After I got done reading the chapter to Doug he commented, “I resonate with him on that”. I asked for additional clarification for what Doug meant. He responded, “I feel it is not my place to question or to tell God when to heal me. I need to be patient and let God do His work in me—in His own time. He knows what is best for me. I feel safe in His hands.”

Updates will follow here from time-to-time and will not be this long! ~Carole