Monday, November 16, 2009

Induction Treatment, Day 26 and a Missed Opportunity

Well, I made it through round 2 of chemotherapy, which ended yesterday. It was harder than the first round because I barely started to recover my blood counts before my system was blasted again. I was weaker and the side effects were creepier. Today I began to brace myself for the next 7-10 days, which may be the roughest part of this mountainous climb. My bone marrow will fully crash this week, leaving me at risk for infection, bleeding and fevers. My goal was to stay off any antibiotics because the side effects made me sicker than the chemo. One day at a time, right?

This morning I discovered some tummy tenderness that concerned Dr. Forte. After x-rays, a CT scan for a better look-see and a consult with a surgeon, I sit here getting, not one, but two IV antibiotic drips. Ugh. I have been having fevers the past few nights, and with my tummy issues, I had no choice in this decision. It seems that all hell breaks loose the day after I finish chemo. I am reminded that complications are "normal" after chemo for leukemia. It makes sense. The bone marrow is assaulted 24 hours a day, and once the attacks stop, the body then realizes that it survived. It then tries to recover, but it takes a while to break through scorched terrain. I'm told that I have persevered "much better than most." Hmmm. I hate to think of what "most" go through.

Why the consult with a surgeon? To rule out any possibility that I may have an infected appendix. I know, crazy, right? The possibility of having any kind of surgery when I have no ability to heal or clot, is laughable. Thankfully, I just heard that the CT was negative and there is no indication that surgery is needed at all. That was a close one... Besides, I can't believe there is anything left to remove. Between all the surgical procedures I've had to my lungs and my abdomen since moving to New Jersey 10 years ago (wonder what that means), I could fit a Buick inside me!

The other day I had just taken a shower and was not yet hooked back up to my IV. Transport arrived to take me for a set of x-rays, so I went without the IV pump or pole. As I lay on the stretcher in the hallway outside of x-ray, I suddenly realized that no one was watching me. I was on the first floor, not far from the entrance. I could totally make a break for it! I had on my Lowenstein Sandler fleece, which covered up all my hospital wrist bands. I had a cap on my head, which is a dead giveaway that I'm a cancer patient, but it wasn't as bad as not having a cap. I gave this situation some serious thought. Of course I'd have to ditch the mask. The next issue was the slippers. Another giveaway. The biggest problem was the lack of cash for a taxi. If only I had my ATM card! I know I could have made it. I considered running away from home one time as a kid, after a fight with my parents. The lack of cash stopped me then too. I wish I didn't have so much Virgo in my chart...

I would have come back, once I visited my kitten (oh, wait, I forgot my house key too). But the disappointment and shock my escape would have caused Dr. Forte, when he is working so hard to cure me, kept me on my stretcher. A missed opportunity perhaps, but reason got the best of me.

I hoping for a less dramatic day tomorrow.



Thursday, November 12, 2009


There are so many things we take for granted when we're well: The freedom to go outside; eating good food; showering without having to ask permission; and so many other aspects of a normal life. One of the most profound things we take for granted is the ability to see someone's entire face. Because my immune system is basically shot, people have to wear masks when they come in my room, and I have to wear a mask when I have visitors. It's true that the eyes tell much in terms of expression, but when 2/3 of someone's face is covered, part of their humanness disappears. Mask: "A covering worn on the face to conceal one's identity." I never imagined what a difference a hospital mask can make. It really does steal part of one's identity.

I have been cared for by so many doctors, nurses, assistants, and other staff, I sometimes don't even recognize them when I walk around the floor. During such excursions, I am masked, but they are not. It's also interesting to note how often people look right past me, not aware if I smile at them or not. Now that I've been here awhile, more people are noticing me during my walks.

I miss seeing the faces of those who visit me. I can't have many visitors, since it's such a contagious time of the year, but for those with whom I do visit, I miss sharing the emotions that facial expressions provide, especially smiles.

For now, I will have to settle for reading people's eyes and voices. That's a lot, really. This temporary form of identity theft is for my protection. It keeps me from contracting bad things while I'm in the blue room. But the days are sometimes long, and I am anxious to escape this confinement.

This is Day 22 of treatment. Three more days of chemotherapy and then it's wait and see again. Part of being a patient is being patient -- something I have never been good at. I'd like to think that I could have learned this skill in a less dramatic way. But here I am. We respond to life's challenges with as much grace and dignity as possible, and control what we can. For now, the masks are necessary, but I really look forward to the day when they are no longer needed, and to seeing the identities behind them.

Do the world a favor, smile at everyone you see today.



Tuesday, November 10, 2009

Induction Treatment, Day 20

Almost half way there! The results of last week's bone marrow biopsy showed traces of residual leukemia, so I started a second round of 5 days of chemotherapy today. This is very common, and should not be seen as a sign that I'm not doing well. In fact, Dr. Forte and the oncology nurse said that I responded very well to treatment so far. Despite the secondary complications I had, some would even say that I "sailed through." This is not how I would describe it, given my extremely low energy levels, a fairly painful tooth infection, and the side effects from 12 days of 2 very strong antibiotics. But, compared to most, I'm told I did great, given how sick I was when I first came here on October 19th. Lots of leukemia patients have trouble with fevers, infections and bleeding when their bone marrow crashes, creating a domino effect with all sorts of serious problems, usually resulting in a stay in Intensive Care. So, all in all, I'm in pretty good shape.

I will be getting Idarubicin for 2 of the 5 days, and Cytarabine, or Ara-C, in a 24/7 continuous drip for all 5 days -- a little less than the 3/7 protocol for these same drugs that I received a couple of weeks ago. In about a week, the full effect of this second crash will begin and I'll again be at high risk for problems. But no one expects this second round to be any worse than the first, and now that my tooth infection is under control and I'm off the antibiotics, I should be fine. Then it's a matter of waiting for my blood levels to return to non-threatening levels.

Since it's the middle of flu season, we're being extra cautious. Dr. Forte is very protective of me, and he wants to treat me completely so that we can someday say that I've been cured. That's one reason he is treating me again with chemo. He said that because I was in such good health to begin with -- well, except for that whole metastatic cancer detour that distracted me on and off for the last few years -- there's no reason not to treat me with the tried and true protocol for AML, type M4 eos. The inversion 16 chromosome (the upside down gene on chromosome #16) will help in determining how much more treatment I will need in the months and years to come.

So, it's back to one day at a time. Dr. Forte said that my earliest departure date would be around December 6 or 7, assuming all goes well and my blood counts recover normally. I'm sad that I'll be here for my favorite holiday, but I should be home to Sadie, the goofy kitty, in time for our first Christmas together.

There are bright spots. I'll have peace of mind, with this second round of chemo, that we've done the most we can to do kill as much leukemia as possible before I go home. Any stray abnormal cells will be killed off during the 6-8 month consolidation phase of 3 days of Ara-C over 5 days once a month. Another bright spot is that you have all remembered me, here in the blue room. Lots of times when people go out on leave or disappear for medical reasons, it's easy to forget them because they're out of sight, out of mind. Or, the sick person reminds people of their own worse fears. I'm here to tell you that your worse fear is really not your worse fear. Things can always be worse. There's always a sliver lining to everything, even if you can't see it at first. My worse fear used to be, not cancer, but chemotherapy. Been there, done that. Actually, still doing that. Then my worse fear was dying of cancer. I just refuse to accept that as a possibility -- not after the war I've been through and am still fighting. As humans, we are always revising our worse fears, as we get older and we start collecting challenges to overcome. But I choose now to focus on my biggest blessings. It's way more fun and lots more rewarding. Besides, it's the season for counting blessings. Thank you all for your continued support and prayers.



Tuesday, November 3, 2009

Induction Treatment, Day 13

I may have spoken a little too soon. No sooner did I hit the "publish" button on my last post, when the jaw pain that I referred to became quite a bit worse. By the next morning, the left side of my face began to swell and I realized that I had a tooth infection. A dentist was called in, but due to a miscommunication, he didn't come that day. By Friday morning, the left side of my face gave me a natural Halloween costume: Elephant Woman. The dentist came, I had a CT scan and began strong IV antibiotics, which in turn, wreaked havoc on my GI track. (Between 60%-70% of the immune system is in the GI track, so it's no wonder complications arise there when the immune system has crashed.)

For about 5 days I was on the hospital's version of liquid diet because my entire jaw was too sore to chew. Puréed carrots, puréed green beans, and puréed chicken - yes, chicken - got very old very quickly. Then I started getting this chicken colored Soylent Green stuff, which I couldn't even bear to look at. So I'm on liquids that my cousin, Mary, brought me and will hopefully graduate soon to food that my friend, Elissa, made for me. It's all about the food.

I am starting to feel better, having received several transfusions of blood and platelets. My face has resumed its normal proportions, and my energy is slowly returning. The Induction phase of treatment began on the first day of chemo, and it won't end till my blood counts tell Dr. Forte that it's over. Therefore, even though I ended chemo on Day 7, today is Day 13 of treatment. Little did I know that the week after chemo would be the worst.

Tomorrow I will probably have my second bone marrow biopsy to see if there are still leukemia cells present. If so, I will have 5 more days of chemo and then another period of crawling back to health. Although I would hate to have to extend my stay in the blue room, I would hate even more to have to return to it later.

Believe it or not, I am keeping busy. My blood levels determine how much I can actually get done each day: Watching movies from Netflix (thanks Vincent!), figuring out my new Kindle and ordering books to read (thanks Elissa and Dan!), returning e-mails and phone calls (thanks everyone!), uploading NPR broadcasts of This American Life to my IPOD (thanks Michael!), hearing reports about my kitten, Sadie, (thanks Betty and Cathie!), receiving the next batch of needed provisions (thanks Cathie and Jim!), my workouts (laps around the floor with my mask and IV pole so that I can get a glimpse of the changing trees), trying to catch my TV shows without my DVR, and my favorite part of the day: my shower - 15 minutes of complete privacy, untethered from my IV pole.

We're getting there. Day 13 is better than Day 1. As my friend Eliza reminded me recently, this too shall pass. One day at a time.