Change of Plans

At the beginning of my last post, I posed the question,

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great?

The plan for ablating the newly discovered lesion in my right lung on June 15th has been put on hold for three months.  It appears that taking action when I'm stronger and things are, well, closer to "back to normal," is a better way to go.

I took my reports from Johns Hopkins to Dr. Rowley, who reminded me that three things can "light up" on a PET/CT: inflammation, infection and cancer.  Dr. Rowley suspects that the lesion might actually be an infection rather than a tumor, which would be great news!  (I never thought I'd be hoping for a lung infection.)  He also told me that inflammation from a radiofrequency ablation may trigger GVHD.  That would not be good.  Ablating an infection instead of a tumor would also not be good.  He consulted with Dr. Georgiades and they decided that, since ACCB grows so slowly, it's better to ablate when we are able to confirm that the lesion really is a tumor and when I'm not at risk for triggering GVHD.  The plan now is to have a chest CT in two weeks to see, what, if any changes appear.  Because I haven't had any symptoms of infection, I suspect that the new lesion is a tumor, and if it is, I'm off in September for RFA #5 to ablate tumor #8.  In any event, that lesion shouldn't get too comfortable....

Other aspects of my recovery are status quo:  I'm still having trouble eating, my appetite is pitiful, the tremors are coming back as I taper off the steroids for the third time, and I'm still hovering around 93 pounds.  On the upside, I feel like I'm getting stronger, I'm able to do more, and I'm seeing more friends and extended family than I have for the last nine months.  Because my blood counts are so good, it's safe for me to resume some of the things I used to do (like going to church, taking walks, etc.) and this keeps me sane.  I've also been going to support groups, through which I've been able to network with other survivors and learn about projects, research and events relating to blood cancers.

Although my days are busy when I'm feeling well, I'm antsy to get on with it.  Enough with this recovery stuff.  I never imagined that I'd measure my progress by the seasons.  Transplants are hard on people with Type A personalities.  I've never been a very patient patient.  But that's how it is, and I'll get there eventually.  The most important thing is that I'm in remission and I'm getting stronger.  If only someone would tell my tummy!  For now, I have three immediate goals:  recover enough to return to work, get rid of this lung lesion one way or another, and get medical clearance for a glass of pinot noir!  That's not too much to ask, is it?

Cheers!
Kathy

CANcer + HEALth = CAN HEAL

Being One for the Records

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great? I didn't have much of a choice this week. I received some not so great news on Thursday when I had a PET/CT scan at Johns Hopkins. I learned that I have a new tumor in my right lung. I was surprised and disappointed, but as I've been telling people, one new tumor is better than twelve. I know this sounds strange, but in the grand scheme of things, one metastatic lung tumor, for me, is not really that big of a deal. I know what it is and what to do.

As you may remember (it seems so long ago), 10 tumors were discovered in my lungs in October of 2006. Three were removed surgically, and when the pathology confirmed metastatic disease from Adenoid Cystic Carcinoma of the Breast (ACCB) --  the first cancer diagnoses in 2000 -- the remaining seven were killed with radiofrequency ablation (RFA) at Johns Hopkins in Baltimore by Dr. Georgiades.  (See November 2008 posts.)

When I got my first negative PET/CT report showing "no detectable cancer" in September 2009, you may also remember that I threw myself a Negative PET Scan Party in October to celebrate. Two days after the party I became very ill and drove myself to the ER. The next morning I was told that I had an aggressive form of leukemia (AML) and was given a very grim prognosis. And the games began for cancer #2.  (See 10/22/09 post, Nothing Like a Good Party Before a Storm.)

When Dr. Georgiades showed me an image of the tumor from the scan on Thursday, I asked him why this happened. It was a stupid question. He could have said, "because it's cancer, dummy." But he knew what I meant. If cancer were to show up again, I thought it would be the 2 or 3 little tiny spots that he calls ditzels that we've been watching for the past 3 years and are too small to ablate. Where did this new one come from? He suspects that if I had a cancer seed, which otherwise may have just sat there forever, that seed may have grown into a tumor because I trashed my immune system. It popped up before my new immune system kicked in. It makes sense given the last 1 1/2 years (minus the 5 months I was in remission before the relapse) of being treated with an alarming amount of toxic medicines and chemotherapy, the last of which destroyed my bone marrow permanently.

Here's the positive spin on this new tumor situation: When I asked about the ditzels, Dr. Georgiades told me that they've actually gotten smaller. If I grew a new lung tumor, wouldn't you think that a weak immune system would have allowed the ditzels to grow too? Maybe that means that the ditzels aren't cancer after all. As I've said before, we all have spots on our lungs because our world has become filthy and our lungs are filters, like sponges. A lot of different kinds of junk gets stored up in a sponge over time. Only the spots that light up on a PET scan and grow over time are likely to be cancer.

Plus, I only have one tumor. If I had lots of dormant seeds it stands to reason, like the ditzels, that they would have grown too. Yes, I was pretty bummed out driving home from Baltimore. But mainly, I was upset about having to go through another procedure to deal with cancer, especially now. But knowing what's going on is better than not knowing what's going on. And the tumor isn't going away. Let's just kill the killer and get on with it.

Needing to exert as much control as possible, I called one of Dr. Gerogiades' nurses from the hospital lobby and tentatively scheduled the RFA for June 15th. It's a same day procedure, which I've had four times before, so I don't expect much drama. I'll stay with my cousin, Karen, who graciously puts me up every time I make the trek to Hopkins. A week after the RFA I probably won't have a single physical sign that anything was done -- not even a band-aid at the site. It's a pretty amazing procedure (see 11/2/08 post, Radiofrequency Ablation - RFA).  Anyone new to this blog who is curious about this 10 minute treatment can click here to watch a short video, filmed for the documentary that led me to Dr. Georgiades in the first place.

After all my pre-transplant tests were completed last October, I met with Dr. Rowley, my transplant doctor. He said, "the only thing I'm slightly concerned about is the cancer that was found to have spread to your lungs." "Oh, that" I said, dismissing him with a wave of my hand. "That's completely under control. It grows very slowly, can remain dormant for decades, and everything that's been identified as cancer has been killed. Because ACCB is so rare, you won't find much about it. It only occurs in <.1% of all breast cancer patients and of those it metastasizes in about 6% of the cases. There's only a few of us, maybe a couple of dozen at most since the 1940s." "Yes," he said. "And of those few, how many have had transplants?" "Oh, right. Probably none," I realized, feeling again, like the only one on the planet with my ridiculously rare medical circumstances.  Oh wait.  I probably am the only one on the planet....

Several people have suggested that I write a book.  Who would believe it?  I have a hard time believing it myself.  Being "one for the records" can be a scary thing.  But at a certain point, it also becomes humorous -- one of those "oh, paleez" situations.  I'm determined to win this prolonged battle and use my unique misfortune to contribute somehow to the landscape of knowledge on two very different diseases.  But before I can do that, I need to get off this rickety and dangerous roller coaster once and for all.  On June 15th, I'll be one step closer.

Kathy
CANcer + HEALth = CAN HEAL

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