October 16th - Home finally, after some very difficult days

Sorry for not updating my blog sooner. I find it very difficult to post when things are going poorly. If my medical situation gets too scary, writing about it makes it all feel more real and sometimes it's just easier to think about my illness as little as possible. It's like my brain goes into a protective mode to prevent a meltdown.

So here it goes. I went in Sunday morning for my stem cell harvesting. Although my counts were still too low, the doc thought my numbers were close enough, so I was hooked up to the harvesting machine for 4 hours. I don't know the actual name for the harvesting machine, but everyone, even the nurses agree that it looks like something out of Frankenstein's Laboratory. Afterward I felt very weak and tired and went back to the apartment to rest.

That night, things really started to go downhill. I spiked a fever, had a severe headache and had to go to the ER at Sloan Kettering. When I got there they started me on iv antibiotics and tested me for various infections. They also discovered that once again my red blood cell count was very low as well as my platelets. I received platelets right there in the ER and was admitted late that evening and when I went to my room I had another blood transfusion. I was also told that my harvesting earlier in the day had been a waste. I had collected 0 of the six million cells I needed!

I have to admit that the next 4 days after that are pretty much a blur for me. I was on a lot of pain medication (I have never in my life experienced such debilitating headaches), was severely anemic and barely slept. I had 3 more blood transfusions and at least 5 more bags of platelets. The doctors tested my counts every 6 hours and could not explain why they kept dropping despite being given all of blood and platelets. The scariest thing in the world is when the top doctors in the country look at you with no medical explanation for your condition! They did a CT scan and MRI of my brain, they were concerned that I had a hemorrhage around my brain caused by the lack of platelets in my blood. Luckily, tests came back normal. Then they had a theory that possibly I had some unidentified infection that was causing my blood cells to do strange things! But the good news was, I was starting to respond well to the antibiotics and my fever disappeared. By Thursday I was feeling better and my red blood cells started to behave, (my platelets not so much) but things were looking up. I never did received an explanation of what caused the infection or the kooky blood cell problem. The theory I'm going with is that my body was reacting poorly to the Neupogen injections that I had been doing for 2 weeks at that point!

Of course, while all of this was going on, I had to continue the damn injections. And I had to be wheeled down to the harvesting machine every morning for stem cell harvesting! I was what the nurses down there lovingly referred to as a "Slow Bloomer". The harvesting proved to be much more difficult than I was told, mostly due to my infection and difficulty maintaining blood cells. Monday was a complete loss, too sick to even attempt collection. Tues I got a measly 1.2 million and Weds 1.9 million. But on Thursday I collected 2.8 million! So I had 5.9 million out of 6!

Despite my begging and pleading, I was told that my doctor wanted me back again on Friday for a pathetic 100,000 cells and I would have to inject myself again with "Jessica Poison" aka Neupogen. So I did as I was told and as I'm lying there harvesting Friday morning at 10 am my cell phone rings. It's my stem cell doctor's secretary returning my call from yesterday (which one, I called a hundred times), advising me that I did NOT need to do the injections any more and that I did NOT need to harvest anymore!!! I was so angry!

But I did get on a train yesterday afternoon and I was able to come home to my husband and son and that is all that matters now.

I'll deal with it all again on Moday at my next appointment with my stem cell doctor in NYC. But I'm taking the weekend off from cancer.