Monday, Nov 11th, we are still in ICU only because there is no bed yet to transfer him upstairs. Surgical unit says that as far as they are concerned he could go home. Yeah, right! Not safely ambulatory, still experiencing positional headache, constipation rearing its ugly head again. No thanks.
Mid morning, Kate came and removed the suction bulb and tubing, placing a self absorbing stitch to close the hole. By then, the fluid being drained was almost completely spinal fluid with barely a hint of blood. Allowing the cavity to fill up should help with the headaches. As a teenager in the 60’s I had been given a spinal tap where fluid was removed in a vain attempt to uncross my eyes – a condition later identified by an Optometrist as a known side effect of a drug I was taking for skin problems. Stopping the drug fixed the problem that the Doctors at Mass General had recommended dealing with by doing exploratory brain surgery on the premise that there might be a brain tumor! Anyway, the spinal tap I got gave me a migraine headache that lasted 2 weeks. I still remember that headache. I had my butt up in the air as often as possible, trying to pressurize my skull. And when I moved it was ever so carefully and slowly. I’m guessing that the void in his skull caused a similar – perhaps worse – effect.
Dr. Cassaday came by and reiterated his belief that the 2 week delay before round 2 of Chemo would be acceptable. He dismissed my gratitude for confronting the headache issue, saying that lots of people had been involved. True enough, but if he had said the usual “go home and continue taking Tylenol” – or even upped it to Oxycodone – then I’m sure the outcome would have been far worse. Our tendency to cover up symptoms instead of finding the causes is not a healthy one and can even be dangerous. Granted you can’t go doing a CT scan for every last headache! Nevertheless, I’m still grateful that my concerns were addressed instead of ignored.
Dave had a couple meals that Monday on his own, spent time sitting in the recliner, got up several times to try to move his bowels with only very slight headaches, but still felt a lack of confidence in being on his feet. Enjoyed a visit by cousin Pam, and a phone call with his friend, Bob. Finally and suddenly, around 5PM it was moving time back up to 8SA for the fourth time. I reckon the other oncology floors would be very similar, but we are glad to be among familiar faces.
Still room for improvement until he no longer needs the walker, has regular stools, can exert himself without his heart rate going all a flutter, and generally regains trust in his health.
Everything, yet again, seemed to be improving. And then not. He has been dutifully sitting up in the chair and eating a bit, accepting all the vitals and neurological checks and re-sticking of telly (heart monitor) leads which keep coming off. But he keeps complaining of being cold. At one point I got enough layers of blankets on him that it was too much and he broke a mild sweat (no fever), but otherwise he can’t get warm. He has also been despondent whereas I would have expected the quick recovery to be spirit raising.
Still awaiting a second stool after 4 days without. It is really unfortunate that digestive issues have had so little appeal to scientists and health practitioners. It is certainly true that heart failure and brain failure are far more critical in a momentary picture of life, but digestive issues can and do cause a myriad of problems long term as well as short, and we know far far too little about them. Perhaps it is even more of a problem after Chemo, but no one really has a clue how to find that happy balance between too loose and too hard.
In addition to the perpetual cold, and the despondency, there has also been a brief headache, a ‘stitch in side’, and an uncomfortable tummy. All seem like minor issues – but considering how asymptomatic he was with both the leukemia and the brain bleed, I find them hard to ignore and will not. We may not be able to determine what is going on from so little info, but they need to be noted since the accumulation may tell a story eventually.
He was given a pint of blood Tuesday morning due to low platelets (24) (and a one time BP below 80/?)
The Doctors came by this morning and suggested that he could go home, they felt that he was stable and safe. I did not, but could not voice why very well. For all I know, it was not so much worry about him as about me! The biggest worry, I think, was the look in his eyes. I can’t label it exactly. Despondency? Tiredness? What ever it was/is it is a somewhat milder version of the look those last two days before the brain surgery. Days that he was only partially present for and has no memory of. A look I do not remember ever seeing before. A look that I felt should have faded as the recovery progressed.
He has been through a ringer in many more ways than one, and I have no business expecting miracles. I’m torn. I’m tired. I’m drained. Perhaps that is what I see in him. Drained.
I mentioned to the doctor (first year resident) about the inability to get warm, the tiredness, the despondency, and my own inadequacy in caring for him in that condition. He expressed a confidence that there was no new bleed. Why? No symptoms. I reminded him that he was asymptomatic before – with a 3 week old large hematoma! Okay – we’ll keep a sharp eye open and if we see anything worrisome, we’ll get another CT. And not discharge him today.
Me, too – keeping a sharp eye. They removed the telly, radio relay heart monitor on Tuesday, Nov 12. Checked a couple of times after the promise of keeping a close eye and then back to normal. On the other hand, he did seem to be rallying. Got up 3 times to use the recliner, additional to go to the toilet, did 2 additional laps for a total of 3 on Tuesday. Approaching one week since Wednesday morning’s headache that first hinted at the brain bleed.
Summary: Wednesday, Thursday and Friday had been a downhill progression. Friday, evening, the 8th, the brain bleed was found. Saturday morning was the surgery. Sunday morning horizontal per instructions. Sunday afternoon positional headaches during 3 attempts at sitting. Monday suction bulb and tubing removed. A couple of meals, attempts to move bowels, a couple of conversations, little else. Still weak and unsure. Transferred back upstairs. Tuesday was a day of uncertainty. Improved neurology, laps, sitting up, ate 2 meals, and finally some signs of life in the bowels. Urology threatening / recommending a catheter but he managed to keep the residual low enough to escape a second attempt. First attempt had accomplished nothing except to cause a minor bleed. Heparin also recommended due to too little activity and concerns for clotting. Even though the bleed had presumably occurred while his platelets were very low, and they are currently normal, I still did not like the idea of thinning the blood and they agreed to use leg massage equipment instead plus more walking. So Tuesday was further recovery/strengthening. They wanted to discharge him but I wasn’t ready and he is still here as of Tuesday evening. But the promised physical therapist and social worker consults did not happen. Perhaps by tomorrow the questions will be moot.
And perhaps tonight I can finally get some sleep??!!
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I did, indeed, fall deep asleep. For an hour and a half. Spent the rest of the night watching the clock. I presume that I dozed and napped, but felt aware enough of my surroundings throughout the night that I doubt I got much additional real sleep. Didn’t feel a need for more, but I know better.
Wednesday the 13th. (13 is my lucky number):
Continuing improvement. A bowel movement as close or closer to normal than most in the past 3 weeks! More strength, interest in getting up and a few more laps. Finished a mile’s worth of laps – in only 4 and a half days post surgery. Yesterday’s worries mostly gone. Felt up to discharge. Discussion with the Doctors very positive. No chemo till the 22nd. Numbers good enough to remove diet restrictions for the time being. Okay to eat out though preferably not among crowds.
Need for things like walker gone. He will need the staples removed and another CT in the meantime, but otherwise it will almost qualify as a vacation!
Hoped to leave about 1 or 2, but as usual all the paper work didn’t get done until close to 5. I did not take the time to question any of it as our driver had hoped to be home before dark and that was already not going to happen. I can straighten things out by phone on Thursday.
Thursday, the 14th: Studied the cryptic appointment notes and understood that Monday they want to check the blood counts and supplement anything too deficient, but the rest was confusing. If I had taken the time Wednesday to go over it with the nurse, I’m sure she could have clarified it as intended, but I hadn’t and now it made little sense. So I was on the phone several times over the course of the day. It turns out that a lot was still up in the air, in the process of being organized, hence the confusion. I may be reading incorrectly between the lines and making assumptions here, but my take on it is that Chemo plus brain bleed are not a good combination. A Subdural Hematoma is bad news in and of itself. We were told that there was a 10 to 20 percent chance of a re-bleed. And I gather that is within the total population with this problem, but maybe that is only in his situation. With Chemo dropping the platelet count, the risk is higher than normal. I’m not clear as to what is normally done with re-bleeds. It is obviously not a good idea to repeatedly open the skull!
Because of all this, the plan is to do another CT scan on Wednesday to see whether the bleed has resolved on its own or is refilling the void. Afterwards, we will have a discussion regarding options based on the results. If the bleed is resolved, then so is the treatment question. If the bleed is still active, they are recommending a procedure where they insert a tiny catheter into an artery in the arm or groin, feed it up to the site of the bleed, and inject a type of “super glue” clotting material to stop the bleed from the inside. There must be some middle ground where the risk benefit ratio is hard to determine. How the heck they can navigate to the bleed mystifies me!
The thought of Chemo dropping platelet counts (though the drop is not expected to be as severe during the second round) and increasing the risk of the hematoma returning does not appeal. So if the procedure appears to be called for, our current thinking is to go ahead with it. That would then need to be done on Thursday after some preliminary preparations on Wednesday, the 20th – so that it would be a done deal by Friday, the 22nd, when they want to start round 2 of Chemo already delayed 2 weeks. It is normal to stay in hospital the day after the procedure but they plan to transfer him from Harbor View (where the procedure would be done) directly to UW. Talk about a tight schedule!
If the procedure is skipped, then he has an appointment with Dr. Cassaday on Friday the 22nd, before being admitted to UWMC for the next chemo round.
A blessed 3 day weekend of freedom! No restrictions, except the limitations of strength and stamina. Thursday, while we were clarifying all this, we walked up to REI about 2 blocks away and bought some more winter wear. I got him seated near the fireplace that was surprisingly devoid of heat, and sought to do the shopping from there, by bringing sales clerks and items to him rather than wandering the store. But then he needed a restroom which turned out to be upstairs at the opposite end of the store, so despite not wandering, he still covered a lot of distance. Had lunch at a small deli on the way. Made it home and back to bed – only 5 days post surgery!
Friday, the 15th, perhaps too emboldened by the speed of recovery, we put in a really long day. His PICC dressing was itching and we wanted to address it ASAP – before the weekend at a minimum. So we packed up everything we might conceivably need for our plans and took the 7:50 shuttle to the clinic, not wanting to spend an hour on the phone before action. We were seen almost immediately!
The dressing normally lasts a week and it was only a day and a half old and already the hypoallergenic version since the standard had caused an obvious rash. There was some discussion about what the problem might be since there was no real visible reaction, and that changing it yet again might not help, but they did change it at our request, and added a skin protectant.
Next we called for a Lyft and drove up to Crown Hill where Riva was parked. Visited briefly with Cousin Annick, then went to Beth’s Cafe for some more breakfast. I grabbed some Floradix iron supplement from the PCC Health Food Store across the street (getting better at multitasking) while waiting for our meal.
Next stop was Seattle Fabric where we got material for a new watch band (old one broken during surgery prep) and for a hat that will hopefully not irritate the scalp stubble as his knitted hat does.
Then it was down to the SeaTac highway rest stop to finally dump Riva’s holding tanks as the first step to winterizing her. I was unable to remove the cap from the sewer pipe, as Dave had expected, simply not having the strength. With white blood cell counts high enough, and despite his weakened condition, Dave managed that step, while I did the rest.
Another stop to get gas and finally we made it to John and Elaine’s place on Key Peninsula. Dave went to bed for a long nap and I went with John to walk the dogs. I felt bad about the strain the trip had been for Dave but I do believe the healing refreshing energizing uplift the visit gave me to be worth it. I can’t be there for him without some support myself and Elaine’s support has been invaluable. Seeing her in person was far more beneficial than the valuable phone calls and the place itself has healing properties.
John and I then finished the winterizing process by blowing out the pipes with compressed air. Errands done, concerns about the winterizing behind us, we could relax and rest. If we had not been able to do it, and the pipes had frozen, it would hardly be a life threatening problem, so it had been at the bottom of the to do list. Every time that I had thought I could get away and do it, something had come up – like the headaches that led to finding the bleed.
Saturday, Nov 16 we let Dave continue to rest up for the trip home and I tackled the mold issue in Riva, partially taking apart the roof vents to get at it. The job was hard enough that I had simply never felt it was worth it, but with a compromised immune system, all such priorities change. We have no intention of using Riva while his system is down, but even so, it was time to do it.
Once done, we reluctantly departed back to the SCCA House to continue recuperating close to help. Posted Nov 18th.
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