Chapter 7: round 2

This is another of our detailed journal entries on dealing with Leukemia, but might not be suitable to read before a thanksgiving feast!

We came back into the hospital with hopeful expectation that the lessons learned the first time would enable us to minimize the impact this time. Plus, starting at a healthier point should also minimize the downside. Not exactly expecting a cake walk, but something far more tolerable.

Got a late start as there was no bed available until 6 PM the 22nd, and there were further delays causing the chemo to actually get started around 11PM. We were doing laps in the meantime, covering 2/3 of a mile that first 6 hours until midnight. We woke up at 4AM when they do their their regular vitals check, and since we were both wide awake we started laps again and finished the day with another 12 laps. 2 miles already.

The knee lift on the bed was not working, but once reported, a repairman showed up almost immediately. He could not fix it in the room, however, so a replacement bed was procured within an hour or so! Wish the defective mattress had received such prompt attention! But, except for the very first bed, back in the beginning, all mattresses have been like new. It sure is good to get concerns addressed so quickly. It raises the mood, and the confidence that one is, indeed, being taken care of. We are so grateful for everyone’s efforts.

Saturday morning, the 23rd, he had a breakfast of graham crackers w/ milk, raisin bran flakes, and a bran muffin. Around 11AM he started complaining of gas pain, which contraindicated any lunch. Then a hint of nausea joined the gas pain. It got worse fairly quickly and by 1:30 it was full blown vomiting and liquid diarrhea. As it continued, his hands started to itch. We reported it. Noted. The itching got worse and was already driving him crazy as the expression says. I noticed red spots on his arms. We called again and asked for help. Request noted, the nurse will be there soon. Meanwhile the rash was spreading and the itching followed the spreading rash. We called again. Asked to have a doctor called in addition to the nurse. This was not going to wait. It was a Saturday and we had visions of having to make do with stopgap measures until Monday for when the real McCoy would be available. The itching had already started when Ativan anti nausea (already on demand) and GasX (no prescription needed) were tried for the earlier symptoms.

They must have worked as the vomiting and diarrhea took a break and the itching took center stage when Kaitlin, our Physician’s Assistant, showed up and spent a considerable amount of time with us. She observed the rash herself as it spread on down his legs, trying to figure out what might be causing it – and consulting with dermatology and pharmacy – while ordering up some IV Benadryl and some antihistamine Zyrtec. Started with oral Benadryl before she came, but when that hadn’t made a noticeable difference in over half an hour, she added the IV Benadryl and Zyrtec together. He was pretty much red all over with a slight puffiness in places and a few small bumps but mostly just itchy red.

Never did figure out what the allergic reaction was to. There was nothing that we were aware of that was a new exposure, so presumably it was something that did not cause a reaction before – in which case, it could have been pretty much anything. None of the drugs currently being taken, according to the pharmacist, were known to do this. Known being a key word. Since we can not prove a correlation, then this reaction will not be a “known” effect, either. We are now suspicious that it might have been the emesis (vomiting) bag but the manufacturer claims it is only HDPE which is inert. We wonder if there was a coating that they did not mention.

Any reaction like this is complicated because there are so many drugs and events happening at once that could be contributory and any desired response requires double checking for contra indications and drug interactions – causing delays in the response.

The oral Benadryl finally kicked in or else the IV was extremely quick acting as he was getting quite sleepy when the IV was given. Ten minutes later at 14:20 he was asleep and slept for about 4 hours. He woke up feeling just fine, thank goodness.

This all required a postponement of the planned lumbar punch – a repeat of a procedure where they take out some spinal fluid to look for cancer cells and replace it with some chemo. It will have to wait. Supper time, he was rather gun shy about eating anything, but the nausea and gas were gone and so we had yoghurt with orange and banana and raisins, then toast with peanut butter. Tolerated without problem, thankfully. Did more laps.

Most of the day was relatively uneventful, but those 3 and half hours were intense. Sunday proceeded without incident. Kaitlin came to see that all was well and noted that he seems to find new and different ways to challenge them. That’s us. Anything but typical. That afternoon was the delayed lumbar punch. Got a couple drops of blood tinted CSF as a keepsake in a vial. This time only spent an hour and half lying down with no repercussions. Monday was also uneventful with only some hiccups to complain about but they were not painful like the last go around. The hiccups are caused by the Zophran anti-nausea medication which the doctors are loath to stop since it seems to be the best prevention of common nausea which can cause all sorts of complications like dehydration and electrolyte imbalance, not to mention misery! Hiccups are trivial in comparison when not painful.

Tuesday presented a bit more excitement with an EKG and echocardiogram and heart monitor due to low heart rate. BP still good at 120/70 as one example, but the pulse down into the low 40’s and even as low as 31! That has them (and us) concerned, and requires close watching. It is possible for the chemo meds to cause this. He was advised to be careful getting up and did so when he needed to use the toilet. He felt fine, however, not the least bit faint or dizzy and went about his business. A nurse noticed his low heart rate on the monitor in the nurse’s station and came to check on him. She was visibly astonished to see him up and around and looking totally normal.

He is expected to be discharged on Wednesday and that usually doesn’t happen until 5ish. Not wanting to go home to Pete Gross House to a nearly empty larder after all the stores are closed, I figured I had better get groceries Tuesday with my brother, Seaton’s, help. Sure hope I don’t stock up only to have the discharge postponed, but I see no reason for excess concern. The previous go around they had him on a heart monitor both in patient and out despite saying at one point that it would appear that the data was due to being extra healthy.

The normal schedule is 5 days in hospital, 16 days at home recovering, back in for the next round.So far we spent 2 nights and one day out, then three days out, then 9 days out – from a total of 34 days since the beginning of the regimen. More time in hospital due to the mucositis and then the subdural hematoma.

Three days of chemo so far this round, and we have walked 51 laps = 5 2/3 miles. And listened to a lot of Harry Potter, Methods of Rationality. Sleep still gets interrupted but no longer seems in short supply.

Wednesday there was third Lumbar Punch which was again, thankfully, uneventful. We brought the laps up over 7 miles. And checked out at 2PM. We feel good. Plenty of reasons to give thanks on Thanksgiving.

Hope all of you also have plenty to be thankful for.

Cheers, Robn


2 thoughts on “Chapter 7: round 2

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