Monday, April 3, 2017 – Day 1

Day 1 of my treatment for Hairy Cell Leukemia. After not sleeping much (nerves, anticipation, whatever else) and writing late into the night on here trying to tell my story, I woke up surprisingly refreshed. I had a pain in my shoulders (muscle ache), but think it’s from nervousness.

I worked from home today, did a few conference calls and kept up with everything coming in. Around 12:30pm, my husband and I left the house to head for treatment. We arrived close to 1pm, but apparently my appointment was really at 1:30pm (even written on my paper as 1pm) – so, we sat around and waited to get blood drawn. After one prick (and pleading this be the only one – unsuccessfully), I went to another waiting area before the treatment room. My nurse calls me in, and I’m walking in now as a patient and not a visitor (viewed the area during the chemo class) – it becomes more real that this is happening. I get set up in my chair, my husband sits next to me, and we wait. A few beeps in the room sound throughout and nurses come over to tell the patients they can go home or switch to the next bag.

Since I have 5 consecutive days of treatment, we decide (I preferred) to put a temporary port in for the week. I have never had a vein accessed through the center of my arm (always elbow area, or hand a few times) and I’m not sure I’d want to again. That was quite painful. Thankfully, hubby handed me his hand and I squeezed it tight until the pain went to a dull annoyance (which it still is).

The first bag was Elitek, to help with the tumor burden. This had been briefly mentioned, but not discussed in-depth. This is to help with tumor lysis syndrome, which essentially when the Cladribine (next chemo drug) does it’s job and kills the bad cells, which fill my bloodstream and could cause major complications. After 30-min, the Elitek is empty and the Cladribine is inserted into my IV. Two hours of Cladribine, a few episodes of Transparent¬†(Amazon Prime), some work emails and calls, and the time passed relatively quickly. Maybe knowing you can’t go anywhere or do anything makes the time not seem as bad. Maybe.

Around 4pm, my stomach was growling (with an hour left) – and we brought plenty of things with us (lip balm, lotion, iPad, books, laptops, antibacterial wipes, hand sanitizer), but food was not one of them. My bag has since been stocked with KIND bars and hopefully we will remember some more before we leave.

After checking out, my stomach is really growling, and we head to dinner. I enjoyed salmon, potatoes and veggies and was happy that I wanted to eat – everyone says around day 3+ to begin to feel the effects (nausea, fever, etc.). Onto sleep and day 2!

11 thoughts on “Monday, April 3, 2017 – Day 1”

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