Saturday, May 18, 2013

Day 73

Today is Day 73 post transplant.  The magic number for an autologus transplant (using my own cells) seems to be 90 days and I am getting close.  After 90 days the immune system has gotten fairly well reestablished, and while due caution is still in order, I can begin getting out and around more than before.  I have started back going to church on Sundays, arriving 2 minutes after the service starts, sitting in the back row, and leaving 2 minutes before the service ends.  After the service is over, that is still an awful lot of people mulling around in a small space, shaking hands and sometimes hugging your neck, so we will reserve that for later.

I am feeling pretty well on most fronts, although my main problem continues to be fatigue.  I can tell a difference and some improvement if I look back a week or two, but I still tire easily after any exertion and can tell that it will be a long and slow journey back.  I started radiation treatments this week, and while there should be few if any side effects from that, it is common to have fatigue after a few weeks of accumulated treatments.  That's all I need - I was just getting headed in the right direction and then bumped into this big radiation machine.  But that only lasts 3 more weeks and then I should be DONE with all the treatments the doctors have been able to dream up.  Not sure how I will react to not having my body poked, poisoned, radiated and otherwise abused, but I am sure looking forward to it.

I read an article in the radiation waiting room this week that started out as follows.

Moving forward as a survivor.  Your active treatment is finished.  You have come through an incredible journey, and now you're ready to embrace life as a cancer survivor.  You may look at things differently now and feel more grateful than ever for your life and health.  But your also deeply concerned about what comes next.  

It then goes on to talk about finding your "new normal".  Much has happened, and much has changed, and finding out where and how you will experience changes to the "old normal" can be difficult.  But somehow I think that I will do just fine adapting to life without cancer.  And considering that about a year ago I was wondering if I would even be alive in May of 2013, I look forward with great joy to addressing each and every one of those changes as they arise.

Wednesday, May 8, 2013

Off to see the wizard.

If you were to look at my cancer treatment in phases, the first phase was my diagnosis in June of last year and the subsequent chemotherapy treatments at Duke, as part of a clinical trial.  Lasting for about 6 months, phase one was successful in eradicating the cancer cells throughout my body, with the exception of one lone persistent lymph node in my abdomen.  That node seemed to able to resist any of the effects of the chemotherapy, and the scans at the end of treatment looked just like the scans at the beginning.  But at least everything else was gone.

Phase two was my Bone Marrow Transplant, also at Duke.  While much shorter than phase one in duration, it was definitely much more intense.  My particular type of Lymphoma is a very aggressive cancer, and has a strong tendency for recurrence.  The decision to undergo a BMT was based on the fact that even though the best available testing techniques (PET/CT scans) did not indicate the presence of any cancer cells (other than that one node), there could still be some cancer cells present that defy detection.  The high dose chemotherapy utilized in the transplant process, while certainly not a guarantee, would further increase the likely hood that all cancer cells had been destroyed.

The PET/CT scan after my transplant provided a somewhat unexpected determination that the one persistent node had been completely resolved, and I was now considered to be in complete remission.  When I say that this determination was somewhat unexpected, it serves as yet another example of how God can work above and beyond all that we often ask or hope for.  As a friend of ours often says, "You can't put God in a box".

Phase three will begin next week.  Even though there is no detectable evidence of cancer cells anywhere, that formerly persistent node is still concerning. My team of physicians, in whom I have the utmost confidence, advise that if my Lymphoma should return, it would most likely start in that node.  So to add another level of insurance, starting next week I will begin radiation treatments to further "zap" that one node.  So for the next four weeks I will undergo radiation treatments 5 days per week, for a total of 20 treatments.  That is 20 times I will travel down the yellow brick road to see the radiation wizard.  Fortunately, the radiology department here at our local medical complex has the requisite equipment and capabilities that I need.  So the wizard is only a ten minute drive down the yellow brick road, rather than a 1 1/2 hour trip back to Duke.  The difference in travel time is huge.

So next week I begin what I expect to be the final phase of my cancer treatment journey.  I suppose you could say that there is still a phase four because for the next 5 years or so I will need to get periodic testing to confirm that the cancer is still gone.  But this phase will be the final active treatment phase.  It should conclude within just a few days of the one year anniversary of my initial diagnosis.  And what a year it has been !!!