Out for a stroll.

Well I am all checked into the Duke Hospital Transplant Unit (9200) and ready to start my high dose chemo regimen.  I am scheduled to receive the BEAM protocol, BEAM standing for BCNU, Etoposide, ARA-C, and Melphalen.  (Who in the world sits around and dreams up the names and acronyms for these drugs.)  But before rushing right into my first treatment, they put me on a fluid IV to get me hydrated for my first infusion later today.  So in the meantime, I went out for a stroll on the floor to get some exercise.

14 laps equals one mile and they say that regular exercise is one good way to assist in quicker recovery from chemptherapy treatments, so I have been trying to keep up my daily exercise.  Learning how to steer an IV pole is not especially difficult, but when you get two or three patients in the halls at the same time, it can be an exciting, and sometime hazardous experience.

The chemotherpy infusions are broken into one hour doses.  Today I start with a one hour infusion of BCNU, also known as Carmustine, which is a derivative of a mustard gas compound.  Now doesn't that just give you a warm and fuzzy feeling.  On Friday, Saturday, Sunday and Monday I get two doses each day of ARA-C (Cytarabine) at 9:00 AM and 9:00 PM , and one dose daily of Etoposide at 10:00 AM.  This continues for 4 days, and then on Tuesday I get 1 hour of Melphalen, only to be discharged and sent home to our apartment.  So for the next 6 days I will never go longer than 12 hours without getting another chemo infusion.  Now I better understand why this is referred to as the high dose chemo phase.

My nurse just brought me a small chocolate milk shake from a batch that was just mixed up.  I can see that the next several days will be a series of highs and a series of lows.  Have to go now and enjoy one of my highs.

Here we go.

On Wednesday of this week we head back to Duke for an appointment with Dr. Horwitz, followed by a few final tests.  Then on Thursday I am admitted to the Adult Bone Marrow Transplant (ABMT) unit of the hospital, where I will receive 5 consecutive days of high dose chemotherapy, which is referred to as the conditioning or preparative regimen.  On the following Tuesday I will be discharged from the hospital and on that Wednesday my stem cells, collected last week, will be re infused back into my bloodstream.  That is followed by a minimum of 21 days of rest and recovery, under the close and watchful eyes of the ABMT medical staff.  For those of you who like the short version, you can stop reading here and check back in a few days for updates.

For those with more curious minds, the high dose chemo serves the purpose of eradicating or destroying the bone marrow and any remaining cancer cells throughout the body.  Unfortunately, the levels of chemotherapy are so high that it also destroys the body's immune system, including most red and white blood cells, and platelets.  During this period I will be at high risk for infections since my immune system is basically nonexistent.  The re-infusion of my stored stem cells, while referred to as the transplant, is actually a rescue, in the sense that without those cells my body would most likely not be able to continue to sustain life.  The high dose chemo destroys the cancer, and the stem cells rescue me from the unavoidable side effects of the chemo.  The infused cells will find their way back into the marrow portion of the bones, where they will reestablish my bone marrow and then begin the production of new blood components, most notably red and white blood cells, and platelets.

For minimum period of 21 days, following the transplant, Holly and I will be living in an apartment very close to the ABMT clinic.  Each morning we will go to the clinic to have blood samples drawn and the results reviewed.  If everything looks satisfactory we will be released and will return to the apartment for the rest of the day.  If any problems or areas of concern are identified, we will stay at the clinic for as long as necessary to address the issue.  This might involve a blood transfusion to elevate platelet counts, administering one or more drugs to boost calcium or potassium levels, etc., etc.  When the issues are resolved we will return to the apartment, only to return the next day and repeat the process all over.  Doesn't that sound like an exciting routine to look forward to.  During this period I will be the guy you see wearing the little blue face mask every where I go.

At the end of 21 days, if everything looks satisfactory, we will be released from the daily clinic routine and be allowed to return to our home-sweet-home.  The recovery and rebuilding process will continue over the next 6 to 9 months, before things will be back to "normal".  Periodic visits back to the ABMT clinic will continue until they are satisfied than my system can be trusted to maintain itself naturally.

For those of you who selected the earlier option to continue reading, you now know more about bone marrow transplants than most of the people you meet each day.  The concept is fairly simple.  The actual implementation is terribly complex.  Fortunately, I have an unbelievable team of specialists that will be watching me day and night to be sure that the end result is achieved as desired.  And I have a Lord that created the universe, caused the mountains and seas to be formed, and formed me in my mother's womb.  His omnipotent knowledge and perfect love will be with me every second of every moment.  What more could I ask for?

One more step completed.

On Tuesday I was the proud recipient of a "central line", or Hickman Port, which enabled me to spend the next two days tethered to this delightful piece of equipment.

I spent Wednesday and Thursday, for 6 hours each day, letting my new best friend extract approximately 4 million stems cells from my blood stream.  I'm sure it wasn't exactly 4 million, but at that level what's a few thousand plus or minus.  Those cells were then sent to the freezer, where they will remain until I am finished with the high dose chemo, and ready to have them "transplanted" back into my blood stream.  They will then reestablish my bone marrow and begin rebuilding my white blood cells, red blood cells, platelets, plasma, etc.  So getting a good supply of stem cells is a rather important step in the transplant process.  Mission accomplished!

I can't say that this week has been an easy visit to Duke, but it really wasn't all that bad either.  The main side effect was fatigue, or better make that exhaustion.  I received 12 super doses of Neupogen and one super booster over the prior week and a half, to get my body kicked into high gear producing stem cells.  Then the Apheresis machine recirculated my entire blood volume 3 to 4 times per day.  All of that, coupled with the very normal apprehension of this unknown procedure, takes it's toll.  I would say I slept 3 or 4 hours of the six that I was attached to the machine.  The nursing staff said that is very normal, and it will probably take 2 or 3 days after returning home, before I get feeling better.

I am home now and taking full advantage of the peace and quiet to get rested up.  I have a week before heading back to Duke for the high dose chemo, followed immediately by the transplant.  But that is all several days away.  In the meantime I plan to take it easy and get prepared to be reunited with my 4 million little buddies.

God is so good.

Tomorrow is another visit to our home away from home, Duke Medical Center.  I will get a Hickman port installed, which is just a fancy way of saying they will install a couple of plastic lines in my chest that connect to some large veins.  These will be used to administer my chemotherapy, and the raft of other drugs that I will be receiving over the next few weeks.  It keeps down the wear and tear of getting stuck with needles every time you turn around.

This week we will be staying in Durham on Tuesday, Wednesday and Thursday nights, before returning home on Friday.  A few nights of sleeping in our own bed, and then it is back to Duke next Wednesday.  I will be admitted to the hospital for high dose chemotherapy, but Holly will have to stay close by, until I am discharged from the hospital the following Tuesday.  We will then need to stay nearby for a minimum of three weeks, so that I can make daily visits to the transplant clinic for my daily blood work and reassessment.  That works out to about 30 nights that we will need to be staying somewhere near Duke in the next 5 weeks.

When someone is diagnosed with cancer, there are a multitude of issues and concerns that must be dealt with, some right away and others later on.  One of these issues is finances.  Treating cancer is not cheap. and depending on the type of treatment required, whether or not you will be able to work, what type of insurance coverage is available, etc., the financial consequences of a cancer diagnosis can be, in some instances, almost as devastating as the disease itself.  Having to spend 30 nights in a hotel with no cooking capabilities, can add up to very large expenses very quickly.  Staying in some type of apartment may reduce the cost of eating out, but generally is much more expensive than hotels.  Trying to determine answers to this aspect of treatment simply adds to the stress and anxiety levels, that are already excessive.

Back in the early days of our journey with this monster, we knew that this would be something that we would need to address at some later time.  But we knew that the Lord was well aware of our many needs, and that somehow he would prepare the way.  Whenever we reached that point, he would show us the where and how.  Part way through the clinical trial chemotherapy phase, we met with Dr. Horwitz and the bone marrow transplant team, to explore BMT as a possible future option.  During that visit we were told that Duke would provide us with a local apartment from the time I was discharged from the hospital until we were released to return home.  This apartment would be made available to us at no cost.  What a blessing.  We were so relieved and so grateful.

As suprising and wonderful as the news about the apartment was, that still left 6 or 8 nights, before and during my hospital stay, that would need to be addressed.  With the majority of our housing requirement already taken care of, we would see about making arrangements for the remainder as the time grew nearer.  Our daughter lives about 4 hours away in western North Carolina, and attends a weekly bible study group with some of friends.  She had asked them to pray for me, and provided them with periodic updates on my progress.  She had apparently mentioned our temporary housing need at some point, because one of her friends commented that her in-laws lived not far from Duke and had a guest house, and she would mention this to them.  Recently, we were told that we were welcome to stay at their guest house as needed, at no expense to us.

Often, we get so busy with our daily lives, with our worries and aches and pains, with our relationships with other people, with the many things that occupy our minds, that we miss the many ways that God is working in our lives.  The many ways, both large and small, that He is preparing our paths and providing for our needs.  He doesn't always do things in quite the way that we might have imagined or preferred, because I have yet to get that fancy sports car that would just thrill my heart.  But He is always there, and always watching out for each and every one of us.  His blessing are many and His love is so pure and complete.  God is so good.

Taking it easy

The last week has been restful, and there are still a few more days remaining before my transplant kicks into high gear. The middle of last week was spent getting a chemo treatment to begin conditioning my body for the stem cell collection.  All this week I have been receiving daily Neupogen shots to boost the rebuilding of my cell counts, and then next week those new cells will be harvested in a process called Apheresis.  To facilitate the Apheresis, next Tuesday I will have a Hickman Port installed, which is a central venous line used to access my blood stream and/or administer chemotherapy, without having to turn the veins in my arms into pin cushions.  Then on Wednesday and Thursday they will connect to that Hickman and the collection begins.

Aside from having to make a daily trip to my local Oncologist's office for the shots, which will continue through next Wednesday, I have not had any other cancer related activities going on in my life (which is hard to comprehend).  It has just been a restful period to rebuild my strength and enjoy some down time.  Periods like that have been hard to come by since last June.  The activity levels will be increasing dramatically in the coming weeks, but for now we are making the most of the peace and quiet.  As I have said numerous times before, we are taking things one day at a time, and these days aren't at all hard to handle.  Gotta run - I think it is time for a nap :-)

A post from Duke

As I write this post I am sitting in my hospital bed at Duke Medical Center.  Yesterday I was admitted to the "9200 unit", which is the section on the 9th floor dedicated exclusively to Bone Marrow Transplant inpatient treatments.  All outpatient services are handled at the ABMT clinic about a block away.  Over the coming weeks I will become very familiar with both of these locations.  Yesterday, after arriving in my room, I met a series of medical staff personnel who were all quite impressive.  This is the same TEAM that will be taking care of me when I return in two weeks for my high dose chemotherapy, the heavy duty 'hit', used to wipe out my bone marrow and immune system, as well as any remaining hidden cancer cells.

My current stay began with infusing lots of liquids so that my system would later flush out the chemo and dead cells more effectively.  I also received some IV premeds to help prevent some side effects, including nausea.  The actual chemo infusion, which was a new drug for me called Cytoxan, only lasted about 2 hours.  Apparently it has the potential for some definite side effects, but 18 hours later I am pleased to report that, other that a mild headache, I have experienced none.  My track record of avoiding side effects continues to serve me well, although I'm not sure how much longer that will be the case.  I'm hoping that history continues to repeat itself, but am prepared for the high dose chemo to be an altogether different experience.  People are telling me to be prepared, but then I have also heard that before.  We shall see.

Yesterday's chemo will cause my cell counts to drop.  Then next week I will receive daily Neupogen shots to help increase the rebuilding of my cell counts, including stem cells.  After that, two weeks from yesterday I will spend at least two days as an outpatient at the clinic, having my stem cells collected for later use.  That procedure, while perceived by some as a painful process of sucking something out of my bone marrow, is actually accomplished by hooking me up to a piece of equipment that circulates my blood out through a catheter, extracts the stem cells, and then returns the blood to my system.  I will be attached to that amazing and miraculous machine, for about 6 hours each day.  At the end of each day they actually count the number of cells collected to determine if they have enough.  For a very non medical type person, who is learning a lot through the school of hard knocks, I am just blown away by what medical science can do these days.

Enough for now from my hospital bed.  We get to return home this afternoon, where I look forward to a good night's sleep, which is something that is hard to come by in a hospital.

Ready to go.

Yesterday was a very full day.  We left home at 7:30 AM and returned back at 7:00 PM.  Needless to say we slept well last night.  The subject of the day was Bone Marrow Transplant, and while we didn't learn anything new in terms of the overall scope of my transplant, we did assimilate a lot of details that helped fill in some of the holes in our understanding, or answered questions we had on our list.  We had a meeting with Dr. Horwitz, where we reviewed various details of the procedures, and then went through several consent forms, which detailed every possible complication that might occur.  At least we are now well informed.  We attended a New Patients Class, which is required as part of the overall preparation phase.  They really got into quite a bit of detail, and gave us some realistic expectations of how things will go at each step along the way.  After 2 hours of discussion, and lots of Q&A, our brains were starting to reach the saturation point.  Add to that 5 or 6 different tests (ie pulmonary and cardio) and it filled out our day with not much time to spare.

Duke Adult Bone Marrow Transplant Clinic

On the way home, Holly and I were discussing what we had heard and seen, and many of the new people we had met.  Our conclusion was that we picked up a lot more understanding about the many steps that we will take in the coming days and weeks, and we also had the opportunity to meet several of the people who make up the team that will be taking us on our journey.  Looking at my chemotherapy treatments over the last 7 months, during my typical 7 week chemotherapy cycle, I would see the doctors 4 times and receive 6 infusions.  The rest of the time was spent at home resting and recuperating.  By contrast, the main part of my transplant will be much shorter and much more intense.  I have compared it to getting hit with a bat during the chemo, and getting hit by a bus during transplant.  During the heart of the procedure, the high dose chemo will destroy most of my white and red blood cells, as well as my marrow and immune system.  The harvested stem cells will then be infused (transplanted) back into my body to rescue me, and begin the cellular rebuilding process.  During this period of several weeks my body has almost no defenses against any type of infection, and I am extremely vulnerable.  It is during this period that I will be watched like a hawk, day and night, for any signs of trouble, so that antibiotics or other measures can be started immediately.  So during this period I will be monitored and treated by what can literally be described as a TEAM.  24/7 there will be several medical professionals nearby, with the knowledge and skills to recognize and respond to any signs of trouble.  This Team will have my life in their hands, so I had better have a lot of confidence in each and everyone of them.  Our visit yesterday went a long way towards beginning to establish that feeling of confidence and trust.  The Duke Adult Bone Marrow Transplant Clinic is a very impressive place.

Next Wednesday I will be admitted to the hospital for an overnight stay, and will receive 2 days of chemotherapy, which is described as "priming" my body to produce more stem cells.  Several days of growth factor injections (Neupogen) and then the following week they will begin to harvest my stem cells.  Up to this point, my transplant was an event that was somewhere off in the future, and reasonably easy to push into the back of my mind.  That is no longer the case.  It is now time to get this show on the road, and I am ready to go, so as they say "Bring it on".  I'm psyched, my TEAM (including my amazing wife) is at the top of their game, and the whistle is ready to blow.  All of that, and God Almighty as my coach, and this victory is almost assured.  Who needs a Super Bowl.  We're going to beat this!!