Wednesday, October 28, 2009

Induction Treatment, Day 7: Last Day of Chemo (for now) and Some Good News

Well, this has been interesting. I expected to be wiped out, barely able to get around, nauseous all the time or worse. The types of chemo I've received don't really make me too sick, and I haven't needed any transfusions so far. The real side effects come with the crashing of my blood counts - the risks of infections, bleeding and fevers. I just started having some weird complications, such as jaw pain, heartburn and a nail infection. At most, I only need the anti-nausea medication once a day. I haven't lost my hair yet, but that should happen any day now. Later this afternoon I will start my last of this 7 day 24/7 infusion of Cytarabine, or Ara-C. Then I think I will get a break. My counts will continue to drop, and then slowly I will re-build my bone marrow. Once that happens, I'll have another bone marrow biopsy to see if I need more treatment.

Once I enter what's called Complete Remission, I may get a longer break before entering the Consolidation Phase. Consolidation is necessary to provide more therapy to eliminate non-detectable disease and prevent relapse — that is, achieve a cure. Typically, this means high doses of Ara-C for 3 of 5 days, once a month for 4-6 months, depending on my blood levels. I thought at first that this current 6 weeks of Induction would be the end of the chemo story, but this is only the first half of the equation. How I'll feel and how much I'll be able to do during Consolidation remains to be seen. All I care about right now is going into remission and getting well enough to go home to my kitty!

Dr. Forte called my room the other night and was very excited to deliver good news. There are subtypes of Acute Myeloid Leukemia, (AML), from M0-M7, and these subtypes have very different treatments and prognoses. I learned that I have M4 eos, which is much better than the more common M4. And he told me that I have a really cool chromosomal abnormality. Here's the lowdown:

The most important factor for predicting a prognosis is cytogenetics, or the chromosomal structure of the leukemic cell. Certain cytogenetic abnormalities are associated with very good outcomes, one of which is called inversion 16, or inv(16). This means that one of the genes on chromosome #16 is flipped. This is good because it's easy to detect and once it's found, I can get treatment before things go downhill. The upshot is that this wacky chromosome significantly increases my chances of long term survival and reduces my chances of a relapse.

Dr. Forte is also researching the possibility of other treatments that will further reduce my chances of a relapse. Even with a Complete Molecular Remission (the best kind of Complete Remission), some hidden cancer cells can still exist. Of course he doesn't want me to have anything that I don't need, and neither do I. But he is talking with a bunch of other doctors to come up with the best plan for me to be around long enough to die of something other than stupid cancer!

Today I read a new post in my favorite resource for anti-cancer prevention and general health, Anticancer, by Dr. David Servan-Schreiber, called Getting by with a little help from our friends. If these findings are true, I'm on my way to being the healthiest person I know, thanks to all of you who have helped in countless ways already!



Sunday, October 25, 2009

Induction Treatment, Day 4

I rarely find myself at a loss for words. I always have something to say about something. But the outpouring of love, support, prayers and well wishes is truly astounding and leaves me at a complete loss for words. I feel truly blessed, and I thank you all from the bottom of my heart. I must give a special shout out to my cousin Mary and my friend Cathie. Mary left her fabulous family in Pittsburgh on Friday to help me set up house in the hospital room that is to be my home till about the end of November. She is staying at my condo with my kitten and putting up with Sadie's crazy antics, while running to Trader Joe's, the bank and Petco. Cathie has been making the trek to Englewood on a regular basis, checking my mail and feeding Sadie when no one is there. Both have been indescribably helpful in talking with my parents and sister in Arizona, all of whom are very distressed about this whole situation. So many others have also reached out in so many ways, reminding me of the goodness of the human spirit.

After a week of living with this horrible diagnosis, the shock is wearing off. I'm gearing up for battle again. At first I felt very weary, like I imagine it might feel like to be called back to active military duty after fighting so hard and making it home in one piece. I just kept thinking, "Why is this happening now, when I finally got my first cancer under control? A little break would have been nice!" But these are unanswerable questions. Maybe someday I'll look back on this and gain some clarity on this chapter of my journey.

Yesterday I received my third and last dose of drug #1, Idarubicin - a strong concoction that is a 15 minute infusion once a day for 3 days. I am on my fourth day of drug #2, Cytarabine or Ara-C. That one is a 24 hour infusion for 7 days. Then I'm done with chemo. My blood counts have started to drop, and they will all bottom out 10-12 days after the start of chemotherapy. Then I will start to rebuild bone marrow without leukemia cells. I don't feel too terrible. I felt a lot worse when I first got here. I'm not too nauseous, and when I feel queasy, there are drugs to make me comfortable.

Several people have asked me how they can donate their blood specifically for me. It looks like next week I will need some transfusions, but my doctor says it's safer for me to use donations from the general blood bank rather than have directed donations from people I know. He'd rather not be limited to directed donations, and there are potential complications from receiving blood from family members when I have no blood counts. But he and I would love for you to donate to the blood bank in your local community to replenish the resources that I may use. The Community Blood Services is a great place to donate.

A few people have commented that I must be really angry with God. I understand that response, but it doesn't make sense to me. God didn't give me cancer. We created cancer. It didn't always exist, back when the Earth was clean and we lived healthy lives and ate healthy foods. I am angry, but I'm angry at cancer, not God. God provides me with an anchor with which to hang on, as I navigate these stormy waters. And there are moments when I think that I can actually feel your prayers. It's a comfort that's hard to describe. It gives me strength for the days ahead.



Thursday, October 22, 2009

Nothing Like a Good Party Before a Storm

To celebrate my Touchdown, I decided to have a Negative PET Scan Party. It's a little odd, but way better than a birthday or holiday in my book. I found some cool lung people for the invitation:

I invited friends and family far and wide, ordered up some party trays, made a batch of knock-your-socks-off sangria, and arranged a wall of PET/CT reports, along with diagrams Dr. Georgiades made showing the progress of my ablated tumors. My kitten, Sadie, even came out to investigate the festivities. My friend Eliza came from Chicago, and my cousin Art came from Seattle. A good time was had by all. That was on Friday, October 16th.

Late Sunday night, after taking Art and Eliza to the airport, I became very sick with flu like symptoms. I was becoming dehydrated and was unable to take in fluids. At 2 a.m. I packed a small bag and drove 45 minutes to the ER. The hospital where my Captain, Dr. Francis Forte (see November 16, 2008 post) practices, is out of range for ambulances in my town.

I knew something was wrong a few days prior to the party because my blood counts came back wacky at a routine visit with Dr. Forte. I have been in Englewood Hospital and Medical Center since Monday, when I was told that I have leukemia, which is cancer of the bone marrow. After lots of tests, procedures, more tests, and a couple of biopsies, the final diagnosis is Acute Myeloid Leukemia or AML.

As I sit here, in the hospital room where I will spend at least the next 40 days or so, I am getting my first day's dose of chemotherapy. I will get one very strong drug for 3 days, along with another drug which will last for 7 days. This is called the Induction phase, where the chemo is crashing my bone marrow. Then, with no immune system whatsoever, I will recover for the next 7 days. Hopefully, my counts will have started to rise by then (if not, I'll wait a few more days till they do) and I will have a second bone marrow biopsy. If there are leukemia cells in my bone marrow, I will have to get more chemo. If there are no leukemia cells, I will be in "complete" remission. That's the new goalpost in this never ending football game: Complete Remission.

It's likely that I'll need several "blood products" (more cancer speak), such as transfusions. The Community Blood Services organization in Paramus is a possible place to donate specifically for me. But Dr. Forte would need to give them specific instructions as to exactly what I need, so we're not quite there yet. That would happen during the second week, when I'm building back my blood counts.

So how am I coping with all this? Well, this has been very tough. It's my 3rd cancer diagnosis - the first was 9 years ago when I was diagnosed with Adenoid Cystic Carcinoma of the Breast (ACCB), and the second was almost 3 years ago exactly when I found out that the ACCB had metastasized to my lungs. This one is the scariest. There's no solid mass to attack. Bone marrow is all over. But I beat it twice before when the odds were against me. I can do this. It's my thing - fighting cancer. I'd like to find a new thing, but that's not going to happen for awhile. So I'm ready for battle. Today I had my first solid food since Sunday, and let's just say that I've already called for a consult with the hospital's dietician. My diet of no red meat, no dairy, no white flour, no sugar and no inflammatory foods just went out the window. I can't have any fresh fruits or vegetables, and I can't receive any flowers because I'm so susceptible to infection. At least they have soy milk.

I haven't cried much. I suppose I will at some point. What makes me tear up is the outpouring of love and support from all my friends, family and co-workers. All the offers to help overwhelm me, especially since I live alone and my family is out of state. Yes, I'm angry, and I'm tired. And I miss my kitty. But really, I'm just grateful that I'm in the hands of my Captain and that I have such a loving circle around me. I believe that God has a plan for me - for us all. This is just one more "hmmm, I can't wait to see what this was all about" reflection. One day at a time. I still believe that Life is Good.

Pura Vida!