On Monday morning, Noelle and I went in to start chemotherapy for my Chronic Lymphocytic Leukemia. The only problem is...that's not what I have. With the CT scan, bone scan, and bone marrow biopsy last week, the diagnosis has changed. My diagnosis has been changed to an advanced form of Multiple Myeloma which has turned into Plasma Cell Leukemia, or PCL. PCL is a very, very rare form of Myeloma which seems to occur in only 1-2% of Myeloma patients. Gee, aren't I the special one. It's a very aggressive cancer, so the treatment has to be aggressive, as well. A different diagnosis means a different treatment regimen. Instead of getting my first dose of chemo on Monday, I was given a 20-minute IV infusion of a drug called Zometa. It's a bone strengthener, meant to counteract the fact that my bones are being made more brittle, and hollowed out by the Myeloma (which explains the three broken ribs in the past two months). After that infusion, Noelle and I were sent home and told that we'd be getting more information later in the day, after Dr. Rick got the remainder of the results from Friday's bone marrow biopsy and could determine the best treatment option for my case.
Monday afternoon, I was called by Dr. Rick and told that he would be transferring my care to the Cancer Center at LDS Hospital, where I would begin my chemo on an inpatient basis. He said I should receive a call from LDSH on Tuesday morning to schedule me for a consult and possible admittance that day, "so bring a toothbrush to the consult." Now my head was swimming. Just how advanced and/or aggressive is my cancer? How long will I have to be in the hospital? How will Noelle and the kids do with all of this? How will I work and earn a living to support my family? If I miss a ton of work, how will I keep my insurance? How will I pay the medical bills, which will surely be in the thousands of dollars, or, more likely, tens of thousands (or more), when we're already living paycheck to paycheck? After a while, I was able to calm myself down and focus on the most important thing for Monday...Jenna's 8th birthday. We enjoyed our evening together as a family, but we did explain to the kids that I'd probably be going into the hospital on Tuesday, and it might be for a while.
Monday night and Tuesday morning, I was feeling the primary side-effect of the Zometa - bone and joint pain. I couldn't sleep at all. I woke up at least a dozen times between 11 pm and about 6:45 am, when I got up. Actually, saying that I "got up" at 6:45 isn't completely accurate. I got out of bed and then promptly sat down next to the bed in the recliner we got a couple weeks ago for just this type of situation. I was not only exhausted from a long, fitful night in bed, the bones in my body felt like I had been run over by a tractor in my sleep. I wanted to give each of my children a priesthood blessing before they went to school (and I to the hospital for who-knows-how-long), so I had Abby come in to my room and sit on the floor in front of me, as I couldn't stand without a lot of pain. I gave her a blessing of comfort and counsel which seemed to flow straight through me from Heaven. I was too weak to bless the other children. Noelle asked me if I would like a priesthood blessing as well. I agreed it was a good idea. Within 15 minutes or so, Matt Moore and George Throckmorten were at my side. I was anointed with oil and given a blessing that my pains would subside. I was also blessed with the ability to respond well to the cancer treatments that would be prescribed for me. I was blessed with a few other things that I won't mention here. As soon as the blessing was over, I stood up with no substantial pain. Some of my bones and joints were still tender, but about 80% of the pain was gone...immediately! I was able to get a SlimFast shake down and give priesthood blessings to my younger four before they left for school.
A little after 8:30 yesterday morning, I received a phone call. Condensed version: "John, this is Rachael at LDS Hospital. We'd like you to come in for admittance this morning around 10:00. Bring comfortable clothes. Today's going to be a long day." "How long do you expect me to be there, Rachael?" "We figure it'll be about 4 weeks." Shower, dress, pack, Holy Cow! I didn't even have time to freak out about it with only an hour to get ready. Before leaving the house, I gave Noelle a priesthood blessing as well. I think that constitutes the first time in the history of the Philpott Family that all seven of us have received blessings on the same day, let alone, within less than 3 hours of each other. We all needed them, though.
After checking in on the 8th floor at LDSH (Room E-848), things started moving pretty fast: MRI of my head/skull, chest x-ray, blood tests (about 15 vials on the first round), an IV pick, pills, finally getting to eat some very forgettable food, another IV pick (yes two available to the staff here), more blood tests, more pills, etc, etc, etc. Oh! I nearly forgot: Noelle and I met Rachael (who is my care coordinator), a doctor from my team, three social workers, a few nurses, nurses' assistants, phlebotomists, and...I can't even remember everyone. Coming off of what had already been a very long night, the day seemed like two or three. At one point yesterday Dr. Hoda told me he figured he'd only need me to stay here for a few days. That was very good news when compared to the four-week stay we had initially been told to anticipate. All in all, it was an extremely long day. Noelle was with me through the late afternoon, which was very comforting.
Today (Wednesday) was much more calm - my chemo regimen has been solidified and begun. I'm on a 3-ingredient "chemo cocktail," though none of the ingredients are the same as what had been previously prescribed when we thought this was CLL. I'm feeling fine - no major side-effects other than elevated blood sugar levels and occasionally tingly lips from the steroids I'm on (move over, Schwarzenegger). Other side-effects will come with time: nausea, hair loss, etc.
I'm blessed to know how well Noelle and the kids - and I - have been taken care of through all of this. I'll have to talk more about that in my next entry. Right now, it's past midnight on Wednesday night / Thursday morning and I am tired. I'm going to bed.
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