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