All Systems Are Go: Let the Countdown Begin

We visited with Dr. Kadia, my leukemia doctor, earlier this month. This was the first time we had to discuss the results of the recent CT scan and bone marrow biopsy. It seems that most of my swollen nodes are back to normal. The only one that is still enlarged is the one that originally measured over 10 centimeters long. It has shrunk to a bit over 4 centimeters in length.

Dr. Kadia began the discussion as he entered the room with acknowledgement that the trial drug, ABT-199, has pretty much done its job. Though I am not in remission, I am about ready to begin the stem cell transplant process. He reasoned that I am healthy. I have three matched donors. I have approval from my insurance companies. And further progress will be minimal. We are also concerned about the uncertainty of the health care system as it stands at this time, as well as the cost of continuing with this drug if it is approved by the FDA. At some point, I would have to pay for it myself. We really don’t know the long term response to this drug, how long it will work, if it is a cure or another stop gap measure. In short, there are too many unknowns to continue this path though there are new drugs in the works that hold promise.

We agreed to continue the program until June when I am scheduled for an additional CT scan according to the trial protocol. After that time, I would move to Dr. Khouri’s care as a transplant patient. Dr. Khouri’s scheduler called shortly after our return to begin the planning. The chosen donor has once again agreed to provide the stem cells. Pending successful test results on both him and me, the actual transplant process will begin on July 10th. Before that I will begin the three day test regimen on June 27th. This will conclude with an outpatient infusion of a powerful chemotherapy drug on July 3rd. and admission to the hospital for the three week isolation on the 10th.

Meanwhile, we have updated our need date with five housing ministries indicating that our need date is now firm. Surely one will have an opening when we arrive in Houston the end of June. It seems this is a serious leap of faith, and it truly is. If we don’t get an apartment for the roughly three months that we must stay in Houston, the transplant expenses will grow exponentially since we will have to stay in a hotel for the duration.

Our Oregon daughter, Tara, will join us a few days before our trip to Houston to help pack and drive us there. We need the car for transportation to places shuttles do not go. She will also stay a few days in Houston helping set up our living space and training her mother to drive in Houston! That should be a fun job. I’m glad she is taking that one on since my wife is directionally challenged.

As you can see, things are beginning to move quickly. It is exciting and a bit daunting all at the same time. How do you pack for a three month trip away from home? Already, my office is beginning to look like a storage unit. Of course, we must remember that everything must fit in our car; Melanie doesn’t drive our truck. She says it is “too big”.

We value your prayers during this extended time. You can pray for the following:

  1. Wisdom in packing
  2. Housing
  3. Travel mercies
  4. Finances
  5. That testing will go smoothly for both my donor and myself
  6. A successful transplant.
  7. That I will not suffer any Graft vs. Host Disease (GVHD) which is the most dangerous part of the process.
  8. That I will remain healthy throughout the process. (My immune system will again be severely compromised.)
  9. That Melanie will stay healthy both physically and emotionally. (Being a long term caregiver is extremely stressful – and she has to do it away from home.)
  10. For a support group for Melanie while we are in Houston.
  11. For a complete cure

I plan to keep this blog going through the entire process. I want it to be an educational opportunity for others who are thinking about a stem cell transplant. I want to use it to keep you all informed. There may be time that I will have Melanie write for me or even one of our daughters.

The countdown has begun. T-52 days and counting!

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Compliments To the Chef

We’ve all heard it said that hospital food is terrible. For the most part, that is true.

We visited a friend of ours in a local hospital. As providence would have it, we arrived at lunch time. Though I did not make a big deal of it, I casually inspected the lunch tray. Typical hospital fare. Now I must temper this a bit by saying my friend is diabetic, so the tray was specialized to meet his dietary needs. Still, the green beans were the usual army drab green. He had a tomato stew that he turned his nose up to after a single taste. The angel food cake had a red goo dribbled over it since icing was a no-no. Don ate the cake with relish. I know for a fact the cafeteria food is much the same.

Since we have spent so much time at MD Anderson as both an outpatient and an inpatient, I have discovered a wonderful exception to the rule.

As an outpatient visitor, we often visit Café Anderson on the first floor of MD Anderson Main. Entering that room is a gastronomical delight. We have yet to get something from every area, so I can’t vouch for all of them, but let me tell you about some of our favorites.

The Smoke House is tops on my lunch list. I always get the brisket which is especially good: tender, good smoky flavor, and usually lean. I top it with BBQ sauce and jalapeno peppers, and add potato salad and slaw. My wife likes the smoked chicken substituting the slaw with baked beans.

We have sampled the Chick-fil-A offerings, opting for the grilled sandwich with waffle fries. I really enjoyed the sesame crusted salmon from the Oriental option. We have sampled the salad bar and the sandwich bar. Before we leave in the evening, we usually buy two slices of pizza to take with us to the hotel for supper.

Everything is well done. Good job Café Anderson chef.

As good as the Café is, the meals served to patients are even better. It almost makes me want to become an inpatient guest just for the meals – almost. You know you are in for a treat when the menu is presented much like you would see in a nice restaurant – no Xeroxed copy with ugly lines streaked down it. No sir! In a way, the menu is almost overwhelming.

Every portion of the menu has multiple options. Lunch/dinner ranges from hamburgers to steak to fresh fish with a multitude of side options. The first time I was admitted, I expected the portions to be small, so I ordered extra (I was hungry). I was wrong. Not only were the portions generous, the food was fantastic. Not only did it taste good, it was presented in a high class restaurant way. Not only delicious but beautiful to behold.  My wife could order from the identical guest menu for reasonable cost.

Ordering was called into a dietitian before each meal, which was good because my only restriction was a low-fat breakfast. The dietitian helped me to balance quantity and quality to meet that requirement – usually a fruit smoothie along with a few other items. The meal was served, not by a flunky in scrubs, but an intelligent server dressed in white shirt, black bow tie, and a black vest – very classy. The only time I was disappointed was the time I was handed a low-fat menu. Even it looked good, however. Still, it didn’t take long for me to exchange that menu!

Many other food service options exist at MD Anderson, but we have not experienced them … yet. To summarize, my complements to the chef! You have set a new standard for hospital food, both in the Café and in the patient rooms.

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Ever asked, “Why me?” You’re not along. Read about this experience on “The Twisting Trail”.

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The latest from “The Twisting Trail”

Read “Big Bible Questions: What is the matter?”

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Read the latest twist in the trail

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What’s New, Pussycat?

It’s been a while since I wrote a “health” post, mostly because nothing much is happening. When I first decided to write this blog, I expected a flurry of interesting activities. That didn’t happen … at least not yet. Instead, I have taken a more sedate route to health.

If you have been following my blog, you know that I originally expected to undergo a stem cell transplant (SCT) fairly soon after I first visited MD Anderson. We were looking forward to a total healing from Chronic Lymphocytic Leukemia (CLL). What really happened is that I was put on a trial drug, ABT-199, from Abvee Labs. The initial flurry of activity involved increasing dosages from 20 mg to 50 mg to 100 mg to 200 mg to the max dosage of 400 mg over a period of four weeks. Each dosage increase involved a stay in the hospital. Melanie and I were in Houston for a total of two months.

The hospital stays were precipitated because the size of one lymph node mass was well over the safe limit which categorized me as a “high risk patient”. The big danger was Tumor Lysis Syndrome (TLS), a situation in which the CLL cells were killed off so fast that the kidneys and liver are overwhelmed resulting in organ  failure and possibly death. This didn’t happen because of the cautious way MD Anderson administered dosages, increased dosages, and monitored my progress. I must commend MD Anderson’s physicians for a well thought out protocol for this drug. To the best of my knowledge, no one in this program as suffered any form of TLS.

Since the initial dosages, our life has revolved around monthly returns to Houston for checkups and tests. All pretty boring things to discuss in a blog. I doubt you all want to know how a bone marrow biopsy is performed or what happens during a CT scan. We simply fly down one day (neither of us drives much anymore) and return the next day or the following day. See what I mean? Bo-o-o-oring.

That pretty much brings us up to the present. The last CT scan results were very encouraging. Since the beginning, nearly all the involved nodes have returned to normal. The only one that hasn’t has shrunk from 10.2 cm at the beginning of treatment to 3.6 cm. The bone marrow has shown considerable progress. Overall, this is quite remarkable in light of the fact that the time span has been six months from the first dose. Next week, we will be returning for one of those overnight visits. Blood tests and a visit with Dr. Kadia. Yeh, exciting. Well, actually we do enjoy the visits with our doctor and his staff; they are wonderful and fun to talk to.

What does the future hold? We are still looking towards a Bone Marrow Transplant sometime this year. This has been approved by all involved insurances. I have three “10” matches, which is the best possible from a Matched Unrelated Donor (MUD). My brother was tested and did not match.

I encourage you to sign up to be a donor. It is painless to be tested. It is relatively painless if you are called upon to donate. You can learn how at Be The Match. There are other organizations as well. You can read more about tissue donations in a previous blog I wrote, “A Word about Tissue Donation”.

I thank you all for your continued support. It means a lot to us to know that hundreds of people are praying for us while we are on this journey. Thank you. Thank you. Thank you.

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Big Bible Questions: Where are you?

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