Chris DeLuca

The blog of the person

The Story So Far part 2

Welcome back to part 2 of the Leukemia story! After this I’ll write about something else, I promise.

If you missed part 1, I highly recommend checking it out, unless you like being confused.

I arrived at the beach to a full brass band and a legion of bikini-ed women all screaming my name. True, I am exaggerating heavily, however it felt like that happened. It wasn’t particularly warm, and it drizzled occasionally, but it was still great just to be out in the open air and hear the waves. Flash forward a few weeks and I was feeling much better. My energy was still low, and I puked a couple times from the Gleevec, but all and all I was feeling good. I was hanging out with friends and having fun, so it was badass.

We had gone to see a couple Leukemia specialists in the state, including a Dr. Orsini at Clara Maass. His facilities were very nice, but what immediately turned me off in the waiting room was a huge cardboard display showcasing Dr. Orsini’s selection as one of the top doctors in the state by New Jersey magazine. However, the article has a disclaimer at the bottom, “Special paid advertising,” meaning that Orsini had essentially paid to be featured in the magazine. Dr. Orsini himself was jovial and looked like he had had plastic surgery, and kept making decisions for me. When I slowed him down and asked him to explain the things he was yammering about, he gave rather aloof, doctorish answers, but gave them in a friendly, stylish, Leukemia Specialists of the OC kind of way. So we didn’t go to him.

Over that weekend, my energy really dropped. My previous doctor visit (still at Holy Name) had revealed that I had a low red blood cell count (anemia), and my doctor, Dr. Pieczara, was pushing heavily for another blood transfusion. When my energy dropped, my mom called Holy Name and asked for me to be admitted into the emergency room for a transfusion. The emergency room had to be used because it was the weekend. I didn’t really want to go, but I was feeling rather apathetic in that moment, and decided to just go along with it. So I wait in the emergency waiting room for 2 hours before I’m finally called in.

My room was tiny, brown, and windowless, with harsh yet somehow murky florescent lights. I changed into the ass-out blue gown they give you, and just sat on the bed not wanting to be there. After around 20 minutes of waiting, the oppressive atmosphere, combined with my not really wanting to go in the first place, on top of my cresting conviction that my red blood cells would come back on their own and another transfusion was reactionary at best and not worth the added risk, convinced me to leave. I changed back into my street clothes, took a peak right and left down the hall, and walked out of the hospital. I passed an orderly on the way out, but I just looked like I was supposed to be there and walked right by. I called my dad for a ride, and he was less than happy that I just walked out without saying anything to anybody, but I felt that if I had said anything they’d try to convince me to stay and I’d somehow end up doing so. Plus I was pissed at them for making me wait so long. Later on I had to explain the whole episode to Dr. Pieczara, who I could tell thought I was a loony, but I stood my ground and it all worked out.

The very next day, Monday, I went to see another Leukemia specialist, Dr. Stewart Goldberg at Hackensack Hospital. Let me tell you, this man is incredible. I learned more about CML in one hour with him, than I had in the previous three months. His bedside manner was caring and empathetic, but direct and very well educated as well. He apparently leads many nation studies and research projects on the cutting edge of Leukemia treatment, which I can only benefit from down the road. I won’t go into all the gory details of how CML works, or how it’s treated, but I will say that my prognosis looks very good. However, he also showed that Dr. Pieczara and Holy Name had miss diagnosed me. They thought I had accelerated phase CML, which means your cells start degenerating and multiplying  and mutating really fast, and many of the cells (called blasts) don’t respond well to the Gleevec. I had the chronic phase, which is much less serious and treatable. Essentially the only thing that changed was my Gleevec dosage; instead of taking 600 mg a day, I now take 400 mg. It also showed that Hackensack > Holy Name.

Skip ahead another week (today, Monday June 8th 2009). I had to go in to see Dr. Goldberg again to get a bone marrow biopsy. The reason for this is so they can check the number of leukemia cells in the marrow itself, which really determines exactly how far along the disease is and gives them lots of doctor information for treatment. The crap part was that they have to stick a giant needle into my ass bone to get the marrow. After waiting for over 2 hours, the procedure is about to start. Dr. Goldberg describes the process in detail, my dad looks queasy and leaves the room.

I lay on my side and face the wall as the hot nurse pulls my pants down to a plumbers crack level. Dr. Goldberg paints my hip with iodine, just above my left butt cheek. Then he sticks me twice with Novocain in the skin, and once in the bone, the latter of which hurt generously. At this point my legs were vibrating, and the nurse was holding my hand telling me to take deep breaths and to lower my heart rate. Then Goldberg pierces my flesh with an 1/8th of an inch needle. I didn’t see it, and because of the Novocain, didn’t feel it. Then he pierced my bone. I nearly shot off the bed as I felt an excruciating “thunk, ca-clunk” of the needle penetrating to my marrow. The pain was intense as he pulled the marrow out, but not nearly as bad as the initial puncture. As he slowly pulled the needle out, I felt something cold a wet running down my butt, and realized I was bleeding rivulets down my crack. Finally, the needle popped out, and the hot nurse wiped my ass and comforted me. I felt very grown up and asked for a glass of apple juice.

It’s over! And I won’t have to go back for another one for a year, and after that, never. Adding to the good news, my white blood cell count hit 9 thousand parts per million, which is within the normal range! Normal normal is 4, which is my target, but at this rate I should be there in a few days. Also, my red blood cell count is at 10 thousand parts per million. The normal is 14,a nd people on Gleevec usually plateau at 12, so I should be “normal” in a month or so. Finally, my sister got her driver’s license! Be very afraid. I will get my bone marrow test results back by this coming Friday, so more Leukemia news then. In the mean time, since I’m caught up on the story so far, look forward to posts about things other than Leukemia! Until then, this is Chris, signing out.