How long does this mini series last?

Oh, the ongoing episodes of this exciting mini series: The Life of a Transplant Patient. I feel like I'm living my own reality TV show. Just to clarify how disturbing that thought is to me, I'll go on record as stating that I watch absolutely no reality TV shows. None. Maybe my punishment for this lack of participation in what I think is a rather peculiar aspect of American culture is to never see a final episode.

I officially have chronic Graft vs. Host Disease (GVHD), an extended version of acute GVHD, which occurs within the first three months after transplant.  At my stage in the game (over 6 months), flare ups are labeled as chronic and the treatment schedule is longer.  Instead of tapering off the steroids every five days I'll be cutting back every two or three months.  This news did not make me a happy camper.  Because of this latest skin rash, I'm back on higher doses of Prednisone, causing me to be more susceptible to infections and viruses.  Consequently, adding insult to injury, I found out last week that the dreaded CMV virus is back.  This took away all camp happiness completely.  The tremors aren't going away anytime soon either.  Only after I stop the Prednisone will I be able to, again slowly, taper off the anti-rejection medicine that is causing them.  Might as well take away my last S'More!

In the meantime, I had an upper GI endoscopy to see if there's a concrete reason I've been nauseous and unable to eat well for the last six months.  Nope.  No concrete reason.  Everything came back negative.  It's good that I don't have GVHD or CMV or other viruses in my stomach, but it's not good that there's no clear course of action as to how to treat my symptoms.  The best guess is that my tummy troubles are caused by all the medications I'm taking.  My docs aren't likely to cut back on any of them for awhile since I have chronic GVHD and active CMV. 
 
In one of my "Why is this so hard?" moments, I called my friend Keith (I mentioned him in my last post), who is a two-time transplant patient.  He said, "Think of it as re-booting. Sometimes you need new software (medications) to keep the screen from going blue...."  There's no way I could have said it better.  It was exactly what I needed to hear.  He took my microscopic vision and gave me back the big picture.

I am confident that this mini series will come to an end, my screen will not go blue, and I will be a happy camper again soon (not to mix too many metaphors in one post).  There's just no other acceptable outcome. I have too much to do and my legs will only go in one direction:  forward....

Kathy

CANcer + HEALth = CAN HEAL

How does this work again?

I still don't get it.  I had heard of stem cell and bone marrow transplants, but I never stopped to think about how they actually work.  It doesn't help that the media never really tells the whole story.  They portray people as being sick one day and better the next.  To watch Kitty on Brothers and Sisters undergo a stem cell transplant from her half brother, you would have thought she was having her tonsils out (where were the consultants on this one?)  

It was only when my friend and colleague, Keith, had a stem cell transplant with his own stem cells (autologous), and when that failed, a second transplant with his brother's stem cells (allogeneic), that I gained an appreciation of the complexity of the process.  [Keith is doing great, by the way, two years post transplant.]  But I still didn't really get it.  Not only didn't I get how dangerous, precarious and slow the recovery process would be, but I also didn't get the science of it all.  I knew that the stem cells from my 33 year old male donor would cause my type A blood to convert to his type O.  It makes sense that if the bone marrow factory that makes all my blood is making type O, then the type A blood "still on the shelves," as Dr. Goldberg put it, will eventually be replaced.  It's still pretty weird, but it makes sense.

I recently learned that, in addition to my bone marrow being 100% converted to a male donor, the actual DNA is male.  Wait, what?  My bone marrow DNA is now male but the DNA for the rest of me is female?  Yes, indeed.  How does that work again? Seriously.  This goes beyond science fiction:  Too much science, not enough fiction.  I know it's real because I keep staring at the test results.  Yet I still can't wrap my head around it.  I could leave my blood on a crime scene, and when the cops show up to swab the inside of my cheek, I'm innocent!  I'm sure CSI has done at least one episode with this twist. 

It really is amazing how far the science of medicine has come.  I find myself cursing all the medications I have to take because of all the side effects that keep me from feeling well.  But they are literally keeping me alive, after this incredibly violent and bizarre transformation at the core of my physical being.

Imagine this screenplay:  Under medical guidance based on decades of research, a person's bone marrow is destroyed completely, leaving the patient on the brink of death.  In swoops a bag of magic stem cells from God knows where, and somehow the patient doesn't die.  The stem cells take hold, make new bone marrow, which produces new blood, and an internal war breaks out.  As the stem cells fight both cancer and the patient (host), immunosuppressants, antibiotics, anti-virals, and a bunch of other preventative medications work to anticipate the next battle.  In the meantime, the patient's DNA for part of the body may switch genders, but this storyline trails off because it doesn't make sense.  If the patient makes it through the first year, chances are the new stem cells will stop fighting the host but keep fighting the cancer and everyone will live together in harmony.  Fade to black.

Honestly, if you read a screenplay like this, how likely are you to invest in this script?  Not me.  It's too unrealistic.

With all these thoughts swirling around in my head, I started thinking again about my donor. I wrote him a second letter last week, hoping he will write me back. My letters are screened by the National Marrow Donor Program, as his identity is confidential unless he agrees to disclose it after a year.  Until then, we can correspond in general terms, without giving away personal information about ourselves.  Here is part of the letter I wrote to him.

When I think of you, I’m reminded of a story I’d like to share.  I was getting blood work done last October, before the transplant, as you probably were too.  There was a man in a chair across from me who was donating his stem cells.  I could tell from the questions he asked his nurse that he was donating to a stranger.  When I finished my tests, I walked up to him and said, “I’d like to thank you for what you are doing.”  He looked at me like I was totally crazy, and asked, “Why?”  I said, “Because you are saving someone’s life.”  He then said, “But this is easy,” gesturing to the IV in each arm.  Then I told him, “You may see it as easy, but it means everything to the person you are helping.  It literally means the world to them.  And someone like you somewhere will be doing that for me in about two weeks.”  I think it was at that moment he realized, as he looked at me standing in front of him, the importance of his donation.

It made me feel good to thank that man, because I couldn’t thank you.  You are that man for me, and I hope you know that you have saved my life.

I wish there was more publicity, knowledge, encouragement, incentives to donate stem cells and bone marrow in this country.  Several of my friends and family members registered to be donors after learning of my illness.  But most people don't know about the registry or its importance.  I know I didn't.  The vast majority of people of color who need transplants will not find a donor because matches are based on race and ethnicity, and there are not enough people of color in the registry.  This is nothing short of tragic.  The fight is hard enough, even when a perfect match is found, as in my case.  My donor is as much a mystery to me as the science of this journey.  To answer my original question, I don't know how this works.  I'm just glad it does.

Kathy
CANcer + HEALth = CAN HEAL

The spirit is willing, but the flesh is weak (Matthew 26:41)

Although I face no moral dilemma, as the title of this post might suggest, the phrase still applies, in a literal sense.  As I approach my 6 month birthday with my new immune system, I get a little frustrated that my flesh is still weak.  I honestly didn't expect for it to take this long to begin to feel better.  I'm not talking about feeling good, just better.  Here's the rundown:

Not So Happy Events
1.  Around the time of my last post, I pulled my sacroiliac (SI) joint in my left hip.  It was very painful to walk, and since I was pretty weak to begin with, it really slowed me down.
2.  A couple of weeks ago I got a cold, which started to move into a sinus infection.
3.  I started having stomach trouble again.  No appetite, a wacky sense of taste, and nausea all the time.  My doctor was going to order an endoscopy to see what was going on, but last week, when my skin became blotchy, he knew that my stomach issues and the new rash signaled a return of graft vs. host disease, or GVDH.  Instead of finally getting completely off the steroids, I was put back on a full dose of Prednisone to treat the third episode of GVHD.  At this stage in the game, after Day 100, GVHD is called "chronic," instead of "acute."  The weaning process for Prednisone with chronic GVHD is slower (just my luck).  My symptoms have gotten a little better, but it's sloooooow going.  In the meantime, I can only hope that the CMV virus doesn't rear its ugly head again.
4.  One of the side effects from the anti-rejection medication, called Prograf, is tremors.  I've been shaking since the transplant, but for some reason, the tremors have become ridiculous.  I can't write, typing is a challenge, and watching me eat soup or salad is every bit as humorous as any of America's Funniest Home Videos.  I probably won't stop shaking till I get off both the Prograf and the Prednisone, which may take 2-3 months.

Very Happy Events
1.  My SI joint is healed, thanks to my chiropractor and physical therapist.
2.  My cold/sinus infection is gone.
3.  I've had several negative CMV test results, so that is now officially under control.
4.  I made it to 95 pounds!  My appetite is improving and I'm trying to eat like crazy.
5.  I bought a beautiful pre-certified 2008 dark blue Audi A4!  Since I had to turn in my leased Toyota, it was time to find another car.  The timing was awful, as all 4 of the Not So Happy Events above occurred simultaneously.  But it all worked out.  I could have found something less flashy, something that didn't gut the remainder of my savings after paying an obscene amount for Zofia's caregiver services.  Here's my reasoning:  Assuming I die of old age, as most people assume, I'll have plenty of time to replenish my savings while driving a cool car.  If I die sooner (let's not forget that any one of us could get hit by a bus at any time), why not drive a cool car?  So here it is:

 

6.  I spent Easter Sunday with relatives in Carmel, NY.  I haven't seen my New York family since October, and I was so very happy to be able to spend some time with them.  It was the best Easter I've ever had.

7.  I was able to do something this week that I haven't had the energy to do since last summer.  I took a walk.  It wasn't a long walk, only about 30 minutes with a 10 minute rest on a very hard bench to take in life's wonders, but it was huge for me.  Sporting my new brimmed hat, prepped with 50+ sun block, and fortified with my decaf iced soy latte, I set out around the park in Maplewood Village.  I was thrilled.  The weather was perfect and everything smelled wonderful.  It was so comforting to see people doing normal things:  mothers pushing baby carriages, dogs walking their owners, kids playing soccer or frisbee or just goofing around, fitness minded folks walking or running to prolong their lives.  Of course I was exhausted the next day, but it was well worth it.

I still have several side effects from the medications, including the tremors, and my energy will plummet again as I taper off the steroids, but the Very Happy Events outweigh the Not So Happy Events, so I'm grateful for my progress.  My recovery schedule is not under my control, nor is it under my doctor's control.  It's dictated by my donor's bone marrow, which is now my bone marrow.  I will teeter on the edge of more Not So Happy Events until my new immune system realizes that I am its new home and settles in.  Eventually, the weak flesh will catch up to the very, very willing spirit.

Kathy

CANcer + HEAL = CAN HEAL

Good News Among World Tragedy

My heart grows heavier every day as I watch the events unfold in Japan.  Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need.  The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia.  My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster.  They are the martyrs in this tragedy. 

It's hard to celebrate happy things when so many people are suffering.   But I do have reason to celebrate.  My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed.  This means that I am in complete remission and the report could not have been better!  My relief is indescribable.  When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i.  This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission.  I was an exception, as usual, and I relapsed.  But when any abnormalities show up, they indicate the presence of leukemia.  I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed."  Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor. 

As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up.  It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them.  But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds. 

My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally.  All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working.  In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November.  I'm free!  This makes me feel less like a cancer patient and more like a regular person.

I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight.  The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner.  I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.

Cancer is a tough war to fight.  This has been an especially tough tour of duty and it's not over yet.  The battle fatigue is difficult for an impatient person like me.  Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again].  I don't mean to compare the two experiences, but the concept struck a nerve.

Overall, I'm optimistic about my future.  I've seen enough of the front lines.  Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer.  But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary.  No problem.  I'm committed to living a very long life and dying of something other than cancer. 

I send my thoughts and prayers out to those in Japan fighting their own horrible war.  They too are on the front lines, battle fatigued and scared.  I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can.  I'm also glad to see relief pouring in from so many counties.  Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.

In love and faith,
Kathy

CANcer + HEALth = CAN HEAL

Didn't Expect That Detour

Life in Transplant World can be such an adventure.  While trying to manage recovery, GVHD, the viruses and infections that can pop up at anytime, some random thing can smack you right in the gut.  And it did.  The day after I wrote the last post, a Monday, I went in for a treatment for the CMV virus.  Having received two of the three required negative test results to stamp down this beast, I was hopeful that the new GVHD flare up wouldn't re-ignite the virus and that this would be my last treatment.  During the five hour infusion, I developed stomach pain that got worse as the day went on.  I was so sick by the time I left, I was given two choices:  get an IV of anti-nausea medication to get me home so that I could take pain killers, or go to the ER.  I elected option one.  That was a mistake.  I made it 2/3 of the way home and had to pull over.  If Dave and Betty hadn't retrieved me from the Parkway, I would probably still be there.  I was sick on and off the next day, and by Wednesday morning, I had pretty much collapsed.  Again, Betty came to my rescue and drove me to the ER.

[For those TMI (too much information) readers, you may want to skip this next part.]  A CT scan of my belly showed that I had a small bowel obstruction that was unrelated to the transplant.  It takes a lot to render me speechless, but that sure did.  A what?  How?  Apparently, this is a standard risk of any abdominal surgery.  No one knows how scar tissue will be formed, and sometimes part of the bowel adheres to the scar tissue causing it to twist.  It can happen years later.  One doctor told me that his 75 year old father had a small bowel obstruction from a surgery that he had when he was 17.  I've had one open and two laparoscopic abdominal surgeries, and one of them probably caused the obstruction.  But on Day 100, when I was supposed to be celebrating milestones in my recovery?  At least it explained why I had been having such bad stomach pain whenever I ate for the last two months. 

I was admitted to the hospital and told that inserting a nasogastric (NG) tube usually does the trick.  It's everything its name implies and extremely uncomfortable.  If that didn't work, they would have to operate, which would then create more scar tissue, increasing the risk of this happening again (not to mention the risks associated with very low blood counts and a compromised immune system).  I was in the hospital for four days, unable to eat or drink.  Thankfully, the terrible NG tube worked and the pain and obstruction are gone.  I'm very happy to be able to eat again, especially since I now weigh 88 pounds.  (I'm eating as much as I can, but the steroids work against me.)  Mary dropped everything and drove from Pittsburgh to help me through this ordeal, as she always does when I'm having a crisis.  I honestly don't know what I would do without her. 

This was certainly an unexpected turn of events that surprised everyone, and I must say, led to some of the most terrible moments of this entire process.  But it's over, hopefully not to be repeated.  As predicted, the increased steroids to treat the second round of GVHD have turned my muscles to mush and lowered my counts.  Also predicted, this brought back the CMV virus, for which I am still being treated.  I feel like I'm swimming upstream, but I have to focus on the passage of time.  I am 110 days old, and my new immune system is learning its way around its new home.  In terms of the transplant, my doctors say that I'm doing great.  I had my twelfth bone marrow biopsy, and I should get the final results in about a week.  Thankfully, this was the last planned biopsy, so my poor hips can finally heal from all those corkscrew invasions.  I'm slowly coming off the steroids, which will allow my body to heal itself from viruses and bring my counts back up.  Although I thought that March was to be my month to gain weight and build my body back, it looks like it might be April.  As long as I get there, I'll be happy and grateful.

I've been to a couple of support groups this week, and again, I'm reminded that there are those that have endured much worse complications than mine.  I really do see a light at the end of this tunnel, and when I finally see the sun (well, I'll have to wear a lot of sun block), I'm busting back into life!

Kathy

CANcer + HEALth = CAN HEAL