May is the month of preparation. It started with having my port removed and replaced with a hicc catheter on Thursday April 30th. Friday, May 1 is a day that my mind has almost completely erased. I received 50x the normal dose of Cytoxan, a very deadly chemotherapy drug. I remember leaving the hotel, parking and entering the BMT unit at Stanford. I remember my nurse Victor, my sister-in-law taking some pictures, the amazingly comfortable bed. But then nothing. My husband came to get me early in the afternoon. I have no recollection of him entering my room, going to the car or reentering our hotel room. He said I vomited A LOT, I complained about not having a vomit bag and just a darn hospital pail. All of sudden it was Saturday. . . . and I am back at Stanford. Disconnection of my IV fluids, I don't even remember having a rolling IV pump with me. A long drive home and I sleep. Sleep is such a wonderful thing. You have no pain, you don't have to feel any of the after shocks from the cruelness of chemotherapy.
The weekend had disappeared and it was Monday. Robert gives me two shots of Neupogen every morning to help my bone marrow produce white blood cells. My white count is at zero and I am in isolation from the very scary outside world. No windows open as the house circulates air that has been filtered twice. I must wear my HEPA mask anytime I need to go somewhere or even to just walk into the garage. I remain isolated in a bedroom while Robert deep cleans the house twice a week. On the sixth day of shots I drive to the lab for blood tests. Stanford is watching for when my white cell count hits 3.0 or better. First day .2 and I begin to watch my platelets slowly drop. Each day I remain the same and my platelets continue to drop. Monday, May 11, my count moves to .3 but the platelets still drop. Tuesday, I finally have good progress white count is 1.3, and platelets are still dropping, UGH. That evening the lab calls to advise I will need a transfusion the next day when I arrive to do labs. Wednesday, transfusion of platelets was easy and my white count is finally at 3.4. YAY. Thursday is stem cell harvest day (apheresis). I am feeling good and drove myself to Stanford. It felt wonderful to have some independence and be outside. My mask was still a requirement, but right now I didn't care. I was in the company of many other transplant patients. We all had masks and would give each other that familiar look as we passed in the halls. I thought about each person, wondering at what stage in this process they were at?
As the machine spins your blood, each different type of cell separates into their little group. Once enough of your stem cells have accumulated the machine will pump them into a bag for storage.The process takes 4 hours. At the end of your 4 hours a small sample of your stem cells are sent to the lab to count the volume you have been able to supply. I need two million cells for transplant and another two million as a back up. It can take 1-5 days to accumulate the volume needed. All day my nurse told me she had a good feeling that I could do this in one day. I heard this over and over. I was not as confident. It took my fellow stem cell transplant friend, Mark, three days.
I return to the little orange house. Orange house, you ask? Yes, our friend's house is orange and I was fortunate to live there for nine months. Returning there during this short visit brought me comfort while going through apheresis. I arrive at my little home away from home just in time to receive a phone call from the nurse at Stanford. She advised me that I did not produce the 4mil cells they needed. At this time I proceeded to tell her "OK, I thought I would need to return in the morning." She then replied "No you don't understand you didn't supply 4mil cells you supplied us with 10mil cells." What? I asked her not to joke with me. She reaffirmed the 10mil and I was free to eat normal food again and enjoy somewhat of a normal life until more chemo at the end of May. So here I am six days past harvest feeling as normal as a cancer patient can. I am still careful about what I eat and how often I am outside. The windows remain closed and my air circulated through double filters. My grandchildren are still off limits and that part hurts, but it won't belong until Nana can hold them again.
But wait, this is not the end of my post for the day. My stem cell harvest has not been the highlight of my month. Through the wonderful world of technology I met a fellow HL patient preparing for his stem cell transplant. He is a few weeks ahead of me in the process and we have quickly become very close friends. Mark lives across the ocean in England. We talk almost everyday and will usually Skype during my afternoon hours which is about 11:00 pm his time. Through him I have become a little stronger, braver and I think more prepared for what is to come. Our treatment varies slightly because of small differences between the USA and the UK but chemo is chemo and a transplant is a transplant. The pain is real. Mark has been honest throughout his journey and makes everyday as positive as the next. I am so thankful to have him and his wife Andie in my life. I have pasted Mark's blog below. Enjoy his positive energy as we both continue the journey of cancer survival.
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