They say life is unpredictable—that is an understatement. I was diagnosed with leukemia December 18, 2003. The books I’ve been reading about cancer patients and survivors all say the same thing—there is one life before cancer and another life after cancer. That is a truer statement than I could ever have realized. Prior to cancer my, life was filled with petty little annoyances and neuroses of which my mind repeatedly over-inflated the importance. Financial worries (which granted were significant) overwhelmed me to the extent of upsetting my stomach. But, in the grand scheme of things, all those issues are so trivial in the face of failing health. If you do not have your health, you don’t have anything. Well, that's not exactly true; the love of those around you is more important because that love provides comfort and strength.
Prior to December 18, I was living the life of a struggling actress in the NYC area. And though it was difficult, I was so energized to be living my dream—taking the risks—finally—that for years I’d been afraid of taking. It was invigorating. I’d performed in some Off-off Broadway productions (original scripts and even to good reviews), background work on “Ed,” “Sex & the City,” and an Oxygen network movie “My Sexiest Mistake,” and taking classes at the T. Schreiber Studio—studying with Terry Schreiber himself, who has become not only the best acting teacher I’ve ever had, but a true friend and support during my illness. I’ve never had an acting teacher take such an interest not only in my career and growth as an artist, but also in me as a human being. In addition to all that, I was starting to find temporary work to help alleviate my financial problems.
December 17, I rented a car and drove out to West Paterson, NJ to do a testimonial for Finishing Touch. It was fun. I was being interviewed as to why I liked the product and why others should buy it. There was no script, so I used my own words to push the product. Obviously, they liked me I’m in the commercial because to date it’s been seen in Texas, Ohio, Indiana, and Kentucky. Supposedly, it will eventually air on various cable stations all over the country. I finished the shoot, returned the rental car, and arrived at my apartment around 12:30pm. My brother-in-law (Dan) was due to pick me up for lunch. When I arrived home, there were two messages on my answering machine from Dr. Dizon, my primary care physician, urging me to call her cell phone number as soon as possible.
The urgency in her voice made me uneasy. I had visited her office that Monday for a follow-up appointment for some urology tests (which were fine) and had addressed my concern with all the bruising on my legs. My legs looked as if someone had been pummeling me—bruises EVERYWHERE. I had noticed over the past couple months (starting in early October) that I was bruising easier—it wasn’t a lot of bruises but more than normal. My sister Barbara and I laughed it off to the aging process. Of course, I thought some of it could be due to diet, perhaps a vitamin deficiency, since I really wasn’t eating very well. However, after Thanksgiving I started to notice the bruising was getting worse—they were not going away. I also felt unusually tired and breathless at times—particularly when walking up and down the subways and the streets of Manhattan. But again, I attributed this to being out of shape and carrying many heavy bags around with me. Anyone would be out of breath in this instance, right? We can rationalize a lot!
Anyway, thank God I had scheduled the follow-up appointment with Dr. Dizon on December 15 and not after the holidays because I may have been dead by then. After she examined my legs, she immediately sent me down to the lab for blood tests, and knowing that I was going to be leaving for Indiana for the Christmas holiday on the 20th, she gave me her cell phone number. I went to the lab, had my blood drawn, and went home. I was concerned. The night before I’d gotten on-line to research “excessive bruising” and the first thing I saw was leukemia, which of course, sent a wave of terror crashing through my body. Of course, my mother didn’t want to hear it, but I told her it was a possibility.
On December 17 at 12:30pm, I returned Dr. Dizon’s call and she told me I needed to get to an emergency room right away. She’d gotten my blood work back and it looked really bad—low red blood cells and hemoglobin counts, extremely low platelets (15,000—normal platelet levels are 150,000 - 400,000 in adults), and a low white blood cell count. I hung up the phone. My hands were shaking and I was very scared. I called Dan and told him to meet me at Jersey City Medical Center’s Emergency Room instead of picking me up for lunch. Although my voice was shaking so badly, I managed to tell Dan that my blood work came back and the results were not good. I hung up and then proceeded to attempt to call four cab companies—no one was picking up and I was getting more upset and nervous as no phones were being answered. No one was available at my apartment building to take me either. Finally, I did reach a cab driver.
Once at jersey City Medical center, Dr. Dizon facilitated getting me through the ER admissions process very quickly and into the back so they could run further blood tests. Dan had picked Barbara up and both arrived at the ER about an hour and half later. Barbara sat by my bed while we awaited the blood test results. Not only did they take blood, but they also gave me an EKG, a chest x-ray, and ran numerous other tests. Dr. Dizon arrived around 5:30pm as the results came in, and they confirmed her lab’s results. She suspected leukemia but did not want me to be diagnosed at Jersey City Medical—they’re not equipped for it she said, so she and CIGNA referred me to Hackensack University Medical Center (which has happened to be an absolute godsend). I was discharged at 6:30pm and Dan drove Barbara and me to Hackensack’s ER, where I underwent the same barrage of tests that night (that I had just undergone that afternoon) before being admitted at 3:00am on December 18. It was a very long, frustrating, scary day.
At 3:00am, they transferred me to the 9th floor of the Pavillion (the staff at the hospital call it The Hilton because it’s so nice—I had a private room). There I managed to get a little bit of sleep. The next day more tests were run—specifically a bone marrow extraction. I was not going to leave the hospital until they confirmed I did not have leukemia. Dr. Alter, a hematologist, who did the extraction said that due to the white blood cell count there was an indication it could be leukemia so they had to test for it, which is what I wanted. Unfortunately, he could get no bone marrow out, so to at least test for leukemia, he had to cut away a bone sample. It was not a painful experience but rather an uncomfortable one—especially since he was working so hard to retrieve marrow that wasn’t flowing; it had almost dried up.
Barbara returned early in the day to stay with me. All day I was dreading the results and trying to stay as positive as I could. Barbara was and has continued to be a great source of support and comfort to me. I’m very lucky to have such a loving family who will be with me through anything. At about 5:30pm Dr. Alter came into my room, and I knew immediately the news was bad. He sat down—a very kind and gentle man, and told me that the bone test came back positive for leukemia. I took a deep breath, pursed my lips together and tried to hold back the tears, and then I let my breath out slowly. I looked over at Barbara, and she looked very distraught. Dr. Alter told me that Dr. Goldberg (my oncologist) would be in later to talk to me more in depth about everything. He also informed me that they would need to do another bone marrow extraction the following day to determine the type of leukemia I have, as there are several.
He left the room and I started sobbing. How could I tell all my friends and most of all my parents and other sister, Karen? This would devastate my parents. Barbara said that she would call them but that she wanted to wait until after we talked to Dr. Goldberg so that we would have more specifics to relate to them. I agreed. About forty minutes later Dr. Goldberg arrived. I put on a fighting demeanor and listened very carefully to what he was saying. I’m surprised I caught as much of the information as I did, but it was good that Barbara was there because she retained more than me. He explained to me what blood is, what leukemia is, and how we would go about curing it. He mostly talked chemotherapy and its side effects—all of which can be dreadful and permanent—i.e. – infertility. The fact that the possibility of being infertile upset me so much was weird because for years now I’ve been contemplating adoption over biologically having a child. However, knowing that the option to bear a child could be taken away from me was very upsetting.
Before he left the room I told him, “Okay, let’s kick the shit out of this thing!” Once he was gone, I lost it. My brave exterior collapsed. I got up out of bed, covered my face with my hands and started sobbing. My first words were, “I’m so f—ked.” My sister hugged me tightly and we cried together. She then picked up the phone to call our parents and Karen. I couldn’t talk to anyone—I needed to deal with this news in my own way. How shocking—how could this happen? I’m 37 years old!!!! My future was so bright? How, how, how?? But I’ve been dealing with it now for over ten weeks, and I’m learning so much about myself and life.
Friday – February 27—transplant discussion day: This was extremely difficult. Up to this point, I wanted to focus on dealing with having cancer, coming to terms with it, and knowing that the disease is curable. And being cured was what I planned. It hit me, though, Friday that my type of leukemia is rare—it is Adult Acute Lymphocytic (or Lymphoblastic) Leukemia (ALL). It is a childhood disease and where childhood diseases are concerned, they are much more problematic in adults. Though I am young (at least I thinkso) and my body is strong, in terms of ALL, I’m old—after 10 years old the cure rates start decreasing rapidly.
I have remained blissfully ignorant of prognosis statistics long enough, and now that the possibility of transplant is up for consideration, I have to take a look at the cold hard facts in order to make an informed decision. In my case, it isn’t a clear cut-and-dry decision as to which course is better—chemotherapy induction (which is happening right now) plus two years of a maintenance chemo, or onto transplant. Unfortunately, I received more dismal information about bone marrow transplant survival statistics than I’d hoped, which set me off into a day of complete depression and more tears. I am considered, I believe, standard risk Adult ALL as opposed to high risk Adult ALL, which you would think would be good, but transplant seems to benefit the high risk patients more. However, both my doctor’s seem to think transplant would be good—overall in leukemia patients chemotherapy plus transplant increases cure rates.
I won’t bore you with the statistics but I have so many decisions to make. There are considerable risks to transplantation—even with a sibling donor. Both my sisters will be tested to see of they’re matches before a timeframe for transplant is set. The more I consider my options, the more I am leaning toward transplant because I feel it is the option that will get me back to life quicker. The thought of waiting three years and then an additional fifteen months (typical relapse period) to see if the leukemia is gone or comes back is too excruciating. I can’t put off life that long. I want my life back—only better this time! Not that my life wasn’t good before, but I have many changes to make. This has been a huge time of reflection, and I’m working on those changes now and will definitely incorporate them into my life in an on-going basis.
Regardless of how scary it all is I know that am not a mere statistic or number. I am a flesh and blood human being with a stubborn streak, strong fighting will, and a desire to make not only my life, but also the world around me, a better place.
Overall, I am doing well. I have been out of the hospital since (round 3 chemo) February 19, and I feel great. My counts are up and I am planning a weekend in Manhattan (March 12-14) to visit friends, socialize, and maybe even do a little salsa dancing. My doctor has said it would be okay to go to Indiana for Easter to see my parents and friends that I grew up with. So, there are activities scheduled for me. As I’m told, don’t stop living your life—keep doing the things you love to do. When my blood counts are up, I am fine, so I need to take advantage of seeing friends, going places, and experiencing life. All we have is now, and it is precious and should not be taken for granted—ever. The past is gone—let it go; the future has yet to happen—let it unwind in it’s own time; but live in the present—revel in it!
