Christmas 2008

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

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

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

(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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.