November 10, 2019
The pace quickens!
Friday, Nov 8th, will stick in my memory for a long time, but not Dave’s. He had spent the previous 2 days doing little more than sleeping. Getting up slowly with effort to take his meds and go pee and not much else. He had eaten at the Taco dinner on Wednesday and the Pasta dinner on Thursday but does not remember them. I put this sleepiness down to recovery from sleep deprivation and/or depression. In hind sight it looks like neither was the main culprit.
Friday morning I soaked in the tub for quite a while and feeling really refreshed I encouraged Dave to sit up in the recliner for a while. He was agreeable. I offered him some lunch. Fresh made kale juice (Kale/collard/celery/apple/banana) followed by carrot juice by itself. Also yogurt with apple slices. He wanted something more substantial and we didn’t have much in that category but I offered him a protein bar with almonds and coconut cream and he ate it with no complaints about mouth pain. I was thrilled.
It was approaching time to go to the clinic for assorted appointments and I went to the clinic to pick up a wheelchair. His walking was getting slower and more hesitant and I didn’t think he could climb the tall steps into the shuttle. When I got back with the wheelchair, he needed to pee and left the recliner. He rested his hands on my shoulders for security while walking but did not rely on them. Made it to the toilet, did his business and stood up. But he couldn’t stand straight. He was leaning over far more than the Tower of Pisa and would have slowly fallen if it weren’t for the wall. He straightened up and turned for the bathroom door, leaning and pivoting and threatening to fall into the tub. Made it to the wheelchair just outside and I wheeled him down to the shuttle waiting room with 10 minutes to spare.
The driver got the wheelchair into the shuttle and fully secured – but that secured the chair while doing nothing to secure him. They did have a Rube Goldberg contraption of belts which neither of us could figure out the intended deployment of, so all we could do was a half-assed restraint. Apparently they assume that the wheelchair comes with its own seat-belt – which it really should. But the wheelchair was not really intended for vehicular use and did not have any.
Nevertheless we made it to the clinic without incident and went to our first appointment with a nurse for blood draw for labs and PICC dressing change. I asked for an assessment of his vitals, explaining what was happening. The nurse obliged and not only checked his vitals but did a neurological test – checking his pupil dilation, finger squeeze strength, ankle pulse, etc. and assured me that there were no signs of anything happening neurologically.
Reassured, we went to our next appointment where we spoke with a social worker. I asked about getting a chair for the tub and a high rise toilet seat to make it easier to get up. My understanding being that this was the sort of thing the social workers were there for. She said we could buy one ourselves or take several days trying to get approval for the insurance to cover them. Buying one myself was NOT something I wanted to add to my “to do” list. I had been so enamored of the 4 (or 5?) big strong safety bars in the tub that I had failed to notice that there were none for the toilet!!!
We also talked about his depression and other issues. The answers all struck us, or at least me, as being full of reassurance but no action. Well, I hadn’t been all that expectant anyway, and we needed to get on to our next appointment with Doctor Cassaday. We had originally been scheduled to meet with him after Dave’s previous discharge but that meeting never happened due to his going back into the hospital although we did see him during “rounds”.
Once in his office, after weight checking and such, we were seen by his assistant or ‘fellow’ or whatever and went over all our concerns. He left to relay them to Cassaday who came in asking if Dave would be safe at home. That took me by surprise, I hadn’t been thinking in those terms. But on consideration, I said “not if he continues going down hill”. Dr. Cassidy asked Dave if he felt safe at home. Dave said he didn’t know. Dr. Cassidy said that in the absence of a clear “yes, we’ll be safe” – especially considering the holiday weekend – he would arrange for re-admittance. He was also concerned about the headache that was not responding to Tylenol nor hydration and promised to get to the bottom of it.
A bed was found on the same floor as before. We took the shuttle to the hospital, bypassed the ER (per instructions), and went to the admissions counter. Half dozen signatures needed yet again – I fail to see why the original set of admission papers can’t be used considering that it is for an ongoing treatment of a single diagnosis, but no. Dave signed the electronic device with effort. The wrist band was printed out and brought around to our side of the window, held ready to fasten, and I was asked the standard question of “is this correct?” “Um, Noooo.” The band said Robyn Greenwood if I remember correctly! Oops. Start over. He had to re-sign all over again. Perhaps I should have signed for him, but at the time I felt that as long as he could, he should have the dignity of doing it himself.
Correct band finally fitted, we went upstairs and got settled. Almost immediately familiar faces were coming around and doing tests, including neurological. His responses now, 3 and half hours after the one by the picc dressing changer, were showing problems. So a CT scan was ordered and promptly done. It showed a subdural hematoma – a brain bleed. There was a crescent of blood between the brain and the dura layer, up to 1.8cm thick, that had displaced the brain – pushing it all to the left and, of course, applying pressure everywhere. These are usually caused by trauma, but was spontaneous in Dave’s case. Perhaps just the low platelets and DIC, possibly helped by something as simple as a cough.
The mystery is that it had remained asymptomatic for so long. They were pretty sure that it had occurred at the same time as the bloody urine – nearly 3 weeks earlier. There was also a smaller new slow bleed, but the belief is that the decomposition of the old blood was creating an osmotic fluid pull that was creating the pressure and headache.
So now what? Dave had had a pretty miserable three weeks and, although anything but suicidal and still expressing a desire to live, had also made it clear that if the future was likely to be primarily lousy in quality then it would be time to let go and not go to fruitless lengths. It seemed pretty clear that surgery to relieve the pressure would be beneficial – a no brainer (no pun intended). However, it would preclude continuing chemo for a couple of weeks. If that meant the cancer would have time to regroup and come back stronger – meaning more suffering and lower likelihood of winning . . .
And what were the risks that the brain was already damaged enough to significantly reduce quality of life? What would he want? There are so many possible outcomes and no real way to gauge their likelihoods. Would the hope for a good outcome only doom him to what he feared?
It is so easy to say I don’t want CPR if my heart fails, dying once is enough, no second go arounds. Even the intubation question entered into it, as they insisted they would need to intubate temporarily for the surgery, emphasizing that it was not the same as doing it when the body quit breathing on its own. But Dave had said “no” to intubation. Would he want it under this special circumstance? There were no guarantees that he would come out of both brain surgery and Chemo with quality of life intake. Dr. Cassaday told me that, while he would have much preferred this hadn’t happened and that Chemo could have started promptly, given the good results of the lumbar punch, the bone marrow biopsy, and the current blood counts, he felt that the 2 week delay (give or take) was acceptable. The lumbar punch had found no cancer in the spinal column. The bone marrow must have been jam packed with cancer when we started but at the time of the biopsy none was found except by using special equipment that found about a 2 or 3 percent presence of cancer cells. Apparently an unusually good response, hence the possibility of waiting for the brain bleed to heal. In the end I decided that the risks were worth taking and signed the consent forms. Afterwards I tried to explain the situation to Dave and asked if he wanted to veto my decision. No veto. Go for it.
They wanted to wait till morning before doing the surgery as there would be a full complement of personnel available in all the various support specialties. If his condition worsened during the night, they might need to do it sooner on an emergency basis but that would be riskier. Hence, they were doing neurological checks every half hour! He had to think about the answers to the questions and made mistakes. What is your name? (full name usually, but only Heath towards the end) What is your birthday? (I think he always got this one right). What is today? (he gave his birthday one time, 1999 another, assorted other answers.) Where are you? (Snohomish, Houston Texas) Who is that? (meaning me. Janet Erken (his deceased wife), Gretchen (an ex girl friend?) )Why are you here? (no answer.) Wiggle your toes. Grip my fingers. Shrug your shoulders. Hold your hands up in the air. Etc. Etc. repetitive, tiring, and sleep interrupting. He complied with minor deterioration – mostly in the ability to hold his hands up in the air which started and ended lower each test – especially the right one which jerked a bit and sank. One answer, I forget which question, involved zucchini and carrots!
Around 4 or 5 in the morning he became unresponsive. He ignored their questions and commands. Refused to smile and stick out his tongue and all the other tests. I think he did acknowledge their presence and responded in other ways but was not cooperative. They left, to consult with their leader and consider moving up the surgery time.
Afterwards, I took Dave’s hand and explained the reason for the tests, and the consequences of his non cooperation. I said I understood his being tired of the sleep interruptions and how hard it was to comply but that it was increasing his risk if the surgery was done sooner than needed. It was up to him but if he wanted maximum safety he should consider making the extra effort to comply. Next test, he did so. Identified me correctly by full name, made some mistakes but did very nearly as well as the one before the non-compliant one.
In the end he was taken to the OR at 9 AM Saturday morning. At 10:50AM I got a call from Kate, the surgeon’s assistant – the one who had done all the communicating and gotten my signature – and she said it had gone well. The pressurized blood had erupted out on initial penetration and they had removed a piece of skull about an inch and a half across, cleaned out most of the old blood, and covered the opening with a titanium plate screwed in place. What remained should re-absorb on its own. There was hardly anything new needing cauterizing. Just pressure relief and cleaning out. 15 staples and, of course, a drainage tube and bulb.
He would be in recovery for a couple of hours until he woke up. She told me most of this over the phone since I had taken the opportunity to go to SCCA House and pick up more stuff we might need while I had the opportunity and Antares was available with her car to make it easier. We were crossing the Montlake Bridge on our way back, when her call came. Knowing that he would still be at least an hour in Recovery, Antares dropped me off and went to do some shopping.
The hour turned into almost three. At 13:45 he was brought back to his ICU room 13 (my lucky number). The surgical team ‘handed over’ their patient to the ICU team with a run down on his condition, what had happened, and what needed to be done. The speaker, reading from his chart, mentioned initial paralysis, and non responsiveness among a lot of medical jargon. I had a stab of worry that I might have made the wrong decision. But when he saw me, the light was back in his eyes. Neurological tests continued and I could see that he was strengthening bit by bit. He still seemed to want to do nothing other than sleep but that was hardly surprising. It was really not long before he could hold both hands up high and steady and answer all questions with reasonable accuracy. He said November 11th instead of 10th for today’s date – but plenty of healthy people could have made that mistake. When they asked “Do you know who is President?” He responded “I certainly hope not.” and everyone laughed, recognizing the joke. He was back.
There is a lot that he does not remember. He does not remember Friday at all as yet. Sitting up in the chair, eating yogurt and apples, drinking juices, going to pee, almost falling, riding the wheelchair to the clinic, getting the picc dressing changed, blood drawn for tests, visiting the social worker and answering questions, visiting Dr. Cassaday and his assistant and again answering questions, shuttling to the hospital, signing all those forms – twice – etc. All missing from memory. I wonder whether it will come back. I also wonder if some sub-conscience part of the brain had taken over for the day!
He finally gathered strength to roll onto his side and back up a bit, making room for me to lie down and cuddle with him. Antares took pictures of us which surprised Dave when he saw them. He wondered who had taken them, not remember her being there. He did remember a later cuddle repeat.
So Sunday morning finally rolls around. He has had to remain horizontal in order to maximize the potential for the brain to move back into lost territory. Kate had reported that that process had already started before closure, but apparently is not a guaranteed process. So each time he started to get up to pee, we needed to be there with a urinal to forestall it. We were counting the hours until he would be allowed to eat, drink, and sit up.
When the PT (Physical therapist) came Sunday afternoon to help him get up and ascertain his current ambulatory ability and ensure his safety, the first step was to sit on the edge of the bed. That is as far as we got. It gave him a sharp headache, a slight dizziness, and a racing pulse. Without subsidence of the symptoms (in the sitting position), the project was aborted. Later an OT (Occupational Therapist) came for a repeat experiment. Again a headache. No dizziness reported. Pulse high and erratic. Often up around 200. They had been giving him a beta blocker to control the flutter but it had not been given for a while due to the surgery, so now they needed to get it back into his system.
In summary, he is fully aware of having had a close brush with major trouble, glad to be alive, no major troublesome symptoms (minor ones still ongoing, but not a big deal) except for the headache when moving his head. No memory of most of Thursday, Friday and Saturday. And about two weeks before needing to worry about round two of Chemo which is expected, despite the delay, to be less problematic. Plenty of reasons for optimism. Posted about Nov 12.