Sunday, Nov 3, they were happy with his white blood cell counts and said he was welcome to be discharged either Monday or Tuesday. We were not psychologically ready and since there was no suitable place to go anyway, it was agreed that we would wait till Tuesday. The SCCA House was booked full on Monday but we had reservations for Tuesday. Riva is always available but given the extra hygiene requirement she is totally unsuitable for the duration. James’ place is also unacceptable due to a construction project under way – such work can fill the air with dangerous stuff for one with a compromised immune system. Pierce’s place was suitable except for being too far away. So we stayed put in the hospital. Monday was one of the most relaxing days so far but still demanding, nevertheless.
We had our drug consult and got a better understanding of why the various drugs were being recommended or discontinued. One, in particular, was recommended for anxiety – Gabapentin – a common problem with Chemo and something they felt better preventing than treating. The Consumer Medical Information given with the outpatient supply says it is used for epilepsy and shingles pain. No mention of anxiety. We hadn’t seen a need for such a drug but deferred to their experience. I’m still unclear as to the timing of when it was given and not given nor the rational on this one.
Dave experienced 3 or 4 panic attacks during this phase and that seemed to be grounds for continuing it – even though it was not working? It was discontinued a day or two (I think) before discharge, don’t know why. It was explained, and understood at the time, but has not stuck in memory. Tuesday or Wednesday I finally got around to reading some of the literature given with the various drugs regarding usage and side effects. The main sheet regarding Gabapentin listed many common side effects from sleepiness to visual problems to impotence to swelling of the extremities. Nothing unusual there. But in the smaller print of the 5 additional pages, my eye went straight to an admission that Gabapentin can cause Panic Attacks!!!
Naturally, as I was concerned about his panic attacks, I brought this up with several people. Could this be why he had them? I was assured that Gabapentin is given to prevent anxiety. If he was having panic attacks, perhaps he should have a psych consult. Gabapentin causing panic attacks is very rare. So? That does not mean it does not happen. And 76 year olds getting T Cell ALL is also very rare – rarer, I suspect but really don’t know, then panic attacks from Gabapentin.
Supposedly Tuesday would be a quiet day with nothing to do but pack and leave – and a couple minor details, that fill the day. Check in at SCCA House was 4 PM and not wanting Dave to have to sit somewhere till the room was cleaned, we planned on a 4 PM exit from the hospital. The plan was for Pam to take us and our stuff to the House and then visit with Dave, while I drove up to Riva for more stuff since we would be setting up housekeeping. We were looking forward to nice healthy home made juices and smoothies. Hs sore mouth was still not permitting solid food and he was understandably tired of the limited choices like ensure and milkshakes. It seemed everything was sugary. Almost nothing savory. (And cancer feeds on sugar!) So I was going to get the juicer and blender and stop for groceries on the way back.
However, on the way to the House, a voice in my head kept saying, “No, no, no, you are not up to driving under these conditions.” So Dave was abandoned to his new bed and Pam drove me for the errands. We didn’t like the idea of renting an apartment for all the many days when he would be in hospital and the unit unused, but we recognized that it is far far too draining and logistically complicated to be moving every time he is admitted and discharged. So this will be one of our homes for many weeks to come.
By the time we got through with packing, picking up meds, getting a visit from the pharmacist to go over all of them, another visit from the nurse about outpatient needs, contact information, when to call, etc. etc., meal time, a shower, laundry, etc. etc. — it was 5 PM not 4. And it felt like it was already 10PM. Move we did, however, despite the House’s half dozen supply of carts all being missing.
Next morning, there being no rest for the wicked, we took the shuttle to the clinic where yet more lab tests were done, followed by a long discussion about the coming bone marrow biopsy, what to expect, what options there were to mitigate any possible adverse experience, trying to weigh the potential side effects of pain medication versus the potential pain itself which can vary from ‘hardly aware’ to ‘very unpleasant’ – shall we say. Very hard to predict. Dave chose a pain medication but rejected an anti-anxiety medication which sometimes can cause a limited amnesia.
Janet had taken a sedative for a colonoscopy and was purportedly in extreme discomfort afterwards initially but then reported it as no big deal – it went “fine”. Pain forgotten. Dave didn’t like the idea of dealing with pain by erasing the memory of it rather than the pain itself.
The pain medication was delivered by a “lollipop” which needed to be rubbed on the inside of the cheek for about 15 minutes!!! Afterwards, with hindsight, he said he’d rather have a few seconds of procedure pain than that 15 minutes of cheek rubbing in a sore mouth! That part of the options had not been mentioned during the discussion.
So the bone marrow was extracted and a couple minutes later we were free to go home. Results would be discussed during his Friday consult with Dr. Cassidy – additional results would take longer, but the necessary ones would be available in time.
Shortly before all this Dave had developed a mild headache. Started too early to blame on the lollipop or the procedure, so there is no obvious culprit. Just a headache to ensure that life remained miserable. He hadn’t had a headache for several years since his last withdrawal from caffein, but it was a similar sensation. They recommended coffee and Tylenol which eased the headache somewhat but did not end it. Tylenol can mask fevers which are the main sign of trouble when the neutrophils are too low to do their job, but his count was finally above that level so they were less concerned about the Tylenol and he took the usual 2 with the coffee.
Took more later in the day and night, but by morning it was still there nagging away so we checked in with the clinic yet again. They acknowledged that it might be related to dehydration so they told us to come in for IV fluids. It seemed to be helping as the headache faded, but as the IV finished, the headache was getting worse again. Stick to Tylenol, we were told. Okay to overdose up to 4 grams per day!
Tuesday night I warmed up Pea soup which was a challenge to do without going down to the kitchen since we believe that Microwaves are damaging to the health benefits of food, and the only other heating equipment in the room is a coffee percolator. Ended up finding the best technique was the one used for infant formula – soaking in a tub of hot water.
Wednesday night we had tacos prepared for the house by volunteers. Thursday it was pasta by a different group of volunteers. Dave was able to deal with a limited amount of the solid food each night, as the mucousitis continued to resolve.
Wednesday I had planned to drive Riva up to the Silver Lake trailer dump and empty her holding tanks. It appeared to be the first good opportunity to do so while Dave’s problems were in abeyance and Pam would be there to visit with him while I was gone. We even debated making arrangements for getting the pipes emptied using compressed air, as well as moving more stuff off of her that we might want. But the headache that morning returned all that to the back burner. Low priority. It has been on the wishlist even since the ER in Gig Harbor but too many higher priorities every day took precedence.
Wednesday was a very long day and although in no way physically demanding, I was exhausted and having trouble keeping track of things. That warning voice in my head said that I was “losing it.” Dave had dived deeper into depression thanks to the headache which just seemed to be the final straw. Everything else was improving. Pain almost gone except in the mouth and even that had subsided enough to eat a bit of solid taco, as mentioned above. Bowel movements were approaching normal as well. Urine flow increasing and 2 hours apart instead of an hour and a half, and before that every 20 minutes. All trends in the right direction. And then the headache. He is tired (exhausted) and feeling weak. His steps are shorter and slower and sometimes hesitant. He has no desire to do anything except curl up and sleep and sleep and sleep. He has to gather his strength or will or both to get up to take pills or go to the toilet or get off the toilet. I can get little more than a grunt of acquiescence or objection to every query. He did make a bit of conversation with table mates at the Taco dinner Wednesday and the Pasta dinner Thursday but it took effort and was not exactly animated. I did get acknowledgment that he was not wishing that he was already on the other side of the veil but was so so so tired of not feeling well.
It probably does not help that we were looking forward to a break from all the health issues and then learned that they wanted to start round two of the Chemo on Saturday, on schedule, 3 weeks after the first round began. I gather the only reason for postponing it would have been if his white blood cell counts were still low. They aren’t. It doesn’t matter that they only just started climbing and haven’t healed much of the current trauma. We are unclear – I think the Doctors are also unclear – as to what to expect in terms of side effects during/after the second round. All they know is that the TCell-ALL is extremely aggressive and if given a chance will rebound and strengthen. There is not much point in going through all this misery only to give up and give the leukemia the upper hand.
Hanging in there. Thanks for all the support and well wishes. Posted about Nov 10th.