A healthy and thankful me.

Just over 16 months ago, on June 6, 2012, I was told that I had a rare and aggressive form of Lymphoma, that is very difficult to get into remission, and has a 5 year survival rate of 20%.  That news was about as close to a death sentence as I ever care to receive.  Yesterday was my followup visit with Dr. Horwitz at Duke.  After a CT scan and some blood work, I was told that my scan was fabulous, showing no signs whatsoever of residual cancer, my blood work was about as perfect as it gets, and I am not scheduled for another followup visit for 6 months.  Hallelujah !!!!!!!!!!!!!!!

As we were driving home, I said to Holly that I was have some difficulty processing all that I had heard during our visit.  Certainly I understood that I am now in complete remission, and the cancer has been totally eliminated from my body.  And I understood that I no longer have any restrictions on my activities because my immune system, by this point, is totally reestablished and is capable of fighting off most any germs/viruses/infections/etc. that it routinely encounters.  In other words, I am able to resume my life as I knew it before Non Hodgkins Peripheral T-Cell Lymphoma entered, temporarily, into my life and my body.

The reason I am still having some difficulty completely absorbing this most recent positive report is that up until now there has always been a BUT, or a PENDING, somewhere in the conversation.  "Everything looks really good but we need to finish up the radiation treatments."  "You are in complete remission but we want to get a look at another scan in 3 months just to be sure."  "......but...."  This time, however, there was no BUT.  We don't need to wait and see what some additional test tells us.  I don't need anymore treatments of any type.  There is nothing pending except for me, and my amazing family, to get on with our lives.  Why is that so hard to grasp ?  It really isn't that tough, and I look forward to letting it totally sink in.

There is something that I keep thinking about from time to time, and it concerns the people who are right now in the process of going through some form of cancer treatment.  My battle is over and it is time for me to move on.  But someone else out there just got their cancer diagnosis yesterday, or is nervously awaiting the outcome of that biopsy, which will not be good news.  As I sat in the waiting area yesterday at the Duke Bone Marrow Transplant clinic, I saw patients come and go, and could tell that they were in the process of going through their own bone marrow transplant,  and feeling absolutely terrible.  I looked at the door that I had gone through so many times, and thought about the men and women sitting back there hooked up to IV pumps, getting the medications that will keep them alive and hasten their recovery.

I know that I will never forget about those who are going through their own personal ordeal.  And I will always be mindful of the fact that none of us is promised a tomorrow.  I will always remember to say a prayer for them and their families.  Thanks to all of those who remembered to pray for me and my family.  I will be eternally grateful.

Duke followup

Next Thursday I have an appointment with Dr. Horwitz at Duke for my 3 month followup exam.  He has me scheduled for a CT scan rather than a PET scan.  Interesting that he said he prefers doing CT scans for routine followup visits because the PET scans are too sensitive.  They tend to pick up so much that they sometimes give false positives, which then prompt further testing and mental anxiety.  So he feels like the CT is sufficient.

It has been a couple of months since I posted here on my blog.  What a great feeling it has been.  Not being consumed by thoughts about treatments, doctors visits, immune system problems, medications, and the whole raft of things that occupy a cancer patients mind.  Holly and I have enjoyed making the transition back to our "normal" lives.  We have even gone so far as to put a For Sale By Owner sign out in front of the house.  It has been our intent for quite some time to relocate closer to our son and daughter, but our plans got put on hold when the Lymphoma showed up.  But with that behind us, we can begin to pick back up where we left off.

I will report back after we return from Duke, but I did want to post something here in advance of our visit.

My ebook

I have heard from many people that my blog has been very informative and inspirational.  In fact, several have said that I have a gift for writing, and that I should write a book.  So over the last few weeks I have done some reading about how to write an ebook, and the result is that I have just published my first Kindle ebook on Amazon.com.  I took the posts from my blog and turned them into an electronic publication that can be accessed by anyone who has a Kindle ereader, or any other device (ipad, iphone, etc) that has a Kindle app.

My book is titled My Cancer, My Faith and can be accessed here or from the link on the right side of this page.

By their nature, blogs can be difficult to read if you want to start at the beginning and read through numerous posts clear to the end.  In ebook form, this is much easier and is just like reading a hardback book.  Just the other day, someone mentioned that they had recently found out that two friends had been diagnosed with stage 4 cancer.  While those friends could be given the link to my blog, which is free, to read about my experience, this ebook is yet another option ( $4.99).

So to those that said I should become an author and write a book, thanks for the idea.

Moving on

I recall that, in reading the blogs of other cancer patients/survivors, it is quite common that the frequency of posts begins to go down after their treatment ends.  I guess this is a phenomena that should be expected, as the focus begins to shift from daily attention to the details of doctor visits and treatment routines, to a less consuming emphasis on getting back into a life cycle that does not center on cancer.  I now find that it is possible to go an entire day, or even two, without even thinking about cancer, or at least not more than a passing thought.  Six months ago that would have been inconceivable.  As a result my mind does not tend to settle on subjects like 'blog posts'.  But today I wanted to take some time and update my current status.

It has been 2 1/2 weeks since my last radiation treatment, and it is such a joy to know that there are no more treatments, of any type, in my future.  It is such a sublime and wonderful feeling.  However, I do still have a problem with fatigue, as a side effect of the radiation.  My sense is that the fatigue continued to worsen for about a week and a half after my last treatment, before it stabilized, and now I have started to s-l-o-w-l-y regain some of my strength and stamina.  It is so frustrating because I have been in various states of fatigue for most of the last year, and I am just plain tired of being tired !!!  But hopefully sometime in the not too distant future, I will begin to feel more "normal".

As I mentioned earlier, it is quite refreshing to be able to think about things without having cancer exert it's unwelcome influence.  It was about two years ago, after Holly and I had both retired, that we decided to put our house up for sale, and move to Asheville, NC to be closer to our son and daughter, and their families.  Our daughter lives in Asheville, and our son lives in Greenville, SC, about one hour away, and both of these locations is a 4 hour drive from here in Whispering Pines.  Eliminating that 4 hour drive seemed appropriate and desirable.  Then along came Non Hodgkins Lymphoma, and my intimately close relationship with Duke Cancer Center, which is a 1 1/2 hour drive from here.  Had we already moved to Asheville, it would have been a 4 hour drive.  So we decided to take the house off the market until my cancer battle was resolved.  Fast forward many months, and we now find that it is realistic to once again consider relocating to either Asheville or Greenville.  It remains to be seen how this will unfold, with the uncertain real estate market, but we trust that God will guide us along the way.

One aspect of dealing with cancer, is finding something to focus your attention on, other that the cancer itself.  The cancer will get more than it's fair share of your attention, but it simply cannot be allowed to consume 100% of your waking moments.  The patient, and the caregiver and family as well, must find something else to occupy their thoughts and actions, lest they fall into a state of complete depression and despair.  Strangely, one of the things that I have stumbled upon, that has engaged my hands and mind for untold hours, is making jewelry.  That's right - this 6'6", 250 # macho guy, who has always been active in sports and other more manly pursuits, is now crafting beads and chains into bracelets and necklaces.  Will wonders never cease.  And I somewhat shamelessly provide a link to my ETSY website, in case you would like to see what I am now doing with all my spare time.

I know that there are a wide range of people that read and follow this blog.  Some of those people are themselves cancer patients, who are just beginning their journey and their battle, or who are well into their treatment regimen.  It has been my hope and prayer, all along, as I have maintained this blog, that I might be a source of hope and inspiration to some of those brothers or sisters.  My battle and my journey have been unique to me.  My emotional and physical make up are different than anyone else.  My treatment routine and my reaction thereto, has been uniquely my own.  How someone else reacts, or what their outcome may be, will be unique to their situation.  But some aspects of my experience can be shared, and perhaps be of benefit or encouragement.  My faith, my attitude and outlook, my support network, my determination and perseverance, any and all of these can be adopted or utilized by others in varying degrees, to help them along their path.  Some stories about cancer, and it's treatment, are filled with sickness, pain, anguish and depression, hardship and strife.  I have seen and met these people during my time at Duke Cancer Center.  But those are not part of my story.  My path has included both highs and lows.  But my lows have not been as low as those of many others.  And my highs have been higher and more frequent than the levels of other brothers and sisters.  I can not tell others how to fight their fight, or how to rise above their situation.  Only they can determine that.  But I can offer hope.  I can say that my experience indicates that it does not have to be total suffering and absolute hell on earth.  If only one person can draw hope and strength from reading about my experience, then I will have been blessed beyond measure.

What a week, what a month, what a year

Several significant dates and events have all come together this week, and what a grand week it has been.

Yesterday was the one year anniversary of my cancer diagnosis.  It has been a year filled with many emotional, physical and spiritual challenges, but we have met them all and have emerged victorious.

Today is my 20th and final radiation treatment.  The only side effect I have noticed is the return of my fatigue.  I was just beginning to get my strength back and the cumulative effects of the radiation have knocked me back down again.  But the good news is that this should be the last series of treatments that I have to go through, and I should now be able to regain my strength and stamina permanently.

Last Tuesday was Day 90.  I can't believe it has been 3 months since my bone marrow transplant, and that is a very significant milestone for an autologus transplant patient.  While my recovery is not totally complete, and my immune system is still being reestablished, I can now resume most of my normal activities.

And yesterday we headed back to Duke to meet with Dr. Horwitz, for my 3 month followup visit.  My blood work looked just fine, his list of questions was answered satisfactorily, and the visit could not have gone better.  He confirmed I have reached the point that we all hoped and prayed would arrive: I am now in complete remission, will need no further treatment, and will simply be on a routine followup schedule for the next several years with periodic scans to confirm that the cancer has not returned.

Praise the Lord!  Twelve months ago we were struggling to figure out how to deal with devistating news.  Today we are rejoicing in my clean bill-of-health, and looking forward to living our lives without having cancer as a central focus of our daily existence.

All in all I would say this has been a pretty darn good week.

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.

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 !!!