We do not often write stories about individuals, but we recently deviated from that rule and received many comments about how appreciative people were who had similar circumstances and welcomed someone else’s experience to prepare themselves for what’s to come. Having breached that rule once, the flood gates are open and what follows are excerpts from the Journal maintained by a young woman with Chronic Lymphocytic Leukemia who was not able to put the disease into remission through chemo alone and reverted to having an allogeneic stem cell transplant using stem cells from donor umbilical cords.
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Admission Day was spent getting to know my surroundings and having a PICC line inserted to be used in receiving multiple IV’s over the next month or so. I also learned that “PICC” stands for peripherally inserted central catheter, in case you always wondered. That’s in addition to the port in my chest which was used in the past for all of my chemo treatments and blood draws. I was also counseled on what I could expect from starting to take the three chemo drugs tomorrow that will eliminate my existing stem cells so I can then receive infusions of new, healthy ones. Of course, they also wipe out things like hair!
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Next day, up before dawn because of the hustle and bustle of doctors, nurses, etc., so I walked a mile around the ward I was on. Chemo has started and I didn’t anticipate that I would for the foreseeable future be hooked up to, and followed by, an IV stand like my dogs used to follow me at home. After that realization abated, the boredom set in. There’s only so much TV watching a person can take.
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Up early again on the third day and had to unplug my IV stand to make a bathroom trip. During the night I had taken the giant step of naming my stand Wally-e. This day also dawned on my face and eyes becoming puffy because of fluid retention.
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The next few days were pretty tough because the side effects of the chemo caught up with me. Yesterday, I had chemo plus radiation but only radiation today.
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Believe it or not, I am actually excited for the big transplant/infusion today of two sets of umbilical cord cells from Spain, one of which is a different blood type so that if one takes instead of the other, I will become blood type B+ instead of O+. Kinda weird! I feel terrible, and that will continue for several days as my blood counts continue to drop from the chemo and total body irradiation. While my counts plummet, the new stem cells will find their way into my bone marrow and will take up the vacated space there.
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In situations like this, you have to find humor where you can. There is a whiteboard in my room that lists the current nurses and other information; it also has a place for “planned activities” next to which is written “nausea” and two drugs I’ve taken for it. At least it seemed funny at the time.
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The transplant went fine. They have the cells in little IV baggies, and the cells go in by infusion mixed with some saline. It tasted terrible. While the infusion went well, my pulse dropped very low and my blood pressure spiked, both of which could be related either to the premeds I was given or to my body’s reaction to the infusion. No more chemo, but instead two types of anti-rejection drugs, various anti-vitals/fungals and meds to protect my liver. So, the waiting game is on for my various cell counts – white blood cells, platelets, hemoglobins, neutrophils – to drop to near zero. Once they do, the new stem cells are supposed to sneak into my bone marrow and reside there permanently. I know I’ll feel worse as my counts plummet over the next few days.
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I am now very susceptible of contracting various infections but, that said, everything is proceeding as expected so far. To deal with the boredom, I think about my next meal and, if I’m lucky, watch dogs chase pigeons in the dog park I can see from my window.
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One of my medicines is making me very dizzy and today that lasted about eight hours. Because of that, there was not much wandering around the floor. The staff eliminated the drug they think was the cause.
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Today, the more I eat the worse I feel. So, I am on an additional anti-nausea medication which I paired with a few Godiva chocolate-covered cashews.
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The past couple of days found me feeling terrible again, and I also developed some substantial gastrointestinal issues. Enough said about that and I won’t go into what happens if you also have hemorrhoids. The nurses finally found some medication that allows me to digest my food.
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The time has come to deal with my hair, and I had the nursing staff shave it off. It was coming out in handfuls anyway. The downside? My head is getting cold.
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I have been experiencing spiking fevers every day on and off that leave me drained. Luckily the fevers are responsive to Tylenol.
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My fever seems more under control and everything seems to be moving slowly in the right direction. And, I spoke briefly with the social worker about what going home will entail. It seems that I will have a home healthcare worker stopping by every other day for two or three weeks to check my blood and give me some infusions, and I still have weekly appointments with my doctor.
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After three weeks in the hospital, my hair is mostly gone and I am told that it takes three months before it starts growing back. My potassium level is very low and because of that I had to drink a cup and a half of gross, fake orange tasting potassium mixture and water. That made me quite ill, and now I am receiving infusions of potassium to keep the levels up.
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My potassium levels are more normal now and discussions about a potential discharge next week have resumed. I was also disconnected from Wally-e for a while, which was refreshing, and many of my medications have been moved to pill form.
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My fever has returned, and I’ve started taking a steroid that should keep the fever in check, because the hospital won’t send me home with a fever.So, I sit here in my chair shivering, waiting for my temperature to decrease. Still hoping to go home this week.
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I’m starting to realize how little energy I have and how draining the process has been. I think of things like going home and walking up and down stairs to get to bed, get to the kitchen, etc.
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I’ve been here a little over a month, and today is my last day! I can’t wait to sleep in my own bed with my dogs; and husband, of course.
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Being home is awesome even though the first day I had uncontrollable nausea. I also have to learn to walk on the stairs and to give myself a daily infusion and flushing out my PICC lines on my own, after learning from my healthcare nurse how to do it. Mostly I’m just hungry every two hours, although I don’t really want much to eat and I’m very tired all the time. But things get a little better every day. Even my hair is starting to show signs of life. Sure, there’s the seemingly never-ending nausea, but things are headed in the right direction
The young lady in question is my oldest daughter Kelly, who lives in the Chicago area. Unfortunately, her words don’t always effectively describe her actual experience. When you read “tired” think “exhausted”; when you see “spiking fevers” think “raging fevers”; when you hear “nausea” picture “uncontrollable nausea”; and when she says “terrible” believe it’s closer to “nearly unbearable”. But, not only is she a beautiful woman, she is strong always upbeat and happy, and looking for the sunny side of things.
Her husband Rob summed her up perfectly as follows: “From my perspective, Kel continues to handle this whole ordeal, this healing process, with a steadfastness and grace that is astounding. I am proud to be her husband.”
For me, I’m proud and blessed to be her father I thank God she is doing well today.