chapter 10: routine

Posted Date: Thu, Dec 26, 2019 at 1:32 PM

Happy Holidays to All.
Chapter 10: routine

Finally had an uneventful outpatient stay albeit short since it was time for round three. We thought it was going to be Friday the 13th, but it turned out to be Saturday. The biggest concern of the moment was his voice which has been gravelly or hoarse since the intubation for the surgery. It was hardly surprising – especially since he had not fully recovered from the mucositis at the time and it was hence easier for the vocal chords to be injured. There was a tacit assumption that they would heal on their own. After 5 weeks, however, we are becoming concerned that it could become chronic and wish to see an Ear Nose Throat specialist.

On Wednesday, Dec 11th, we went to Harborview for yet another CT scan for a revisit of the option for an artificial embolism to ensure no more brain bleeding. Dr. Levitt again assured us that healing was going well and there was no cause for a procedure. He says the person who reported a small re-bleed was mistaken and it was only the ongoing process of healing.

From there we decided to walk the 1.5 miles downhill to the Pete Gross House. The route uses a long diagonal bridge over I5. It slopes downhill and that turned out to be uncomfortable. Dave’s legs felt like “rubber” but there was no place on the bridge to rest. Once we got to the other side we stopped at the nearest building and asked if he could sit down for a few minutes. The building was Seattle Children’s Research Facility and the inner door was locked. The guard who responded to our testing the door informed us that she was not allowed to let anyone in – cancer patient or no. So we sat down on a bench between the inner and outer doors. She said we could not sit there either. If we did not leave she would call security. (De ja vous? I seem to remember this happening before.)

What on earth is happening to this world of ours? We went and found a bench at a bus stop and sat for a few minutes on the cold metal bench. We then found a nearby Vietnamese restaurant for a longer break and some interesting food. After that it was misting and for once I was not carrying umbrellas. We walked as far as SCCA House which happened to be directly on route and the shuttle was there. It was getting wetter and we had already walked 1.2 miles so we caught the shuttle for a lift the remaining .3 miles.

Friday we went to the Clinic for the standard blood draw, PICC dressing change, and visit with Dr. Cassaday. He confirmed that there would, again, be no adjustment to the chemo dosage, that the lumbar punches would be skipped, and that we needed to do outpatient visits at SCCA not Bothell or Renton as our insurance carrier wanted. We should be able to get help straightening that out. Also that we should talk to UW about the vocal chord issue, as there is no one at SCCA that deals with that.

Saturday we went in and while getting Chemo, Dave walked the halls to the tune of 19 miles! Not only did he do 19 miles but he did many of them at a pace where I struggled to keep up. Struggled to the point that I got shin splints and had to quit! He did feel his energy flagging as the Chemo progressed, but no other issues.

We had a visit from ENT (Ear Nose & Throat Docto) regarding the gravelly voice and she confirmed that there was still a bit of swelling from the intubation but did not feel it was enough to explain the voice issue. One of the two chords is not flexing as well as it should be – which she thought was age related. There is also some “bowing”, also age related according to her. She said they could give an injection which might help but would only last 3 months. It could then be repeated. If desired, a more permanent implant could be inserted via surgery. Without treatment she believes his current voice will stay as it is. It won’t get worse and it won’t get better.

Well if the treatment is only temporary and not treating it will have no repercussions, then the risk, as low as it may be, does not seem warranted. If he changes his mind, it can be done down the road. My gut takes issue with what I understood her to claim. She acknowledged some residual minor signs of trauma from the intubation, still healing, but believed the voice change to be age related. Sorry. His voice changed dramatically at the time of surgery. One way before, the other way afterward. No time delay. And it has gotten better and is still getting better.
So we are hopeful that it will return to normal eventually, but if not, so be it. He says it now reminds him of Janis Joplin.

Wednesday was the last day of Chemo and they said we could go home if we wanted to but it didn’t finish until about 6 PM and we needed to go grocery shopping on the way home. Preferred to do all that during the day and be sure there was no reaction to the pint of blood they decided to give him due to low hematocrit of 26, and get the PICC dressing changed. Perhaps we should be checking out ASAP as we don’t yet know how the insurance is going to work, but we are keeping fingers crossed on that score.

Under Medicare we have to pay $1364 (this year) plus 20% of expenses (above the $1364) for the first 60 days, plus $352 (year 2020) per day for days 61 through 90, plus 682 per day for days 91 through 150, plus anything not covered, plus ALL expenses after day 150 (hopefully at Medicare approved rates! rather than their 20 fold retail prices) — IF I understand the rules correctly. Unless there is a 60 day break with no time in hospital, in which case it starts over.

Under Part B we pay $185 deductible plus 20% copay on everything outpatient plus anything not covered.

His treatment, in a best case scenario involves 6 days in patient out of every 21 days, times 8 rounds = 48 days out of 168. So that would be the $1364 (Part A) plus 20% copay plus $185 (Part B) plus 20% copay, plus everything not covered. Which is a heck of a lot of unknowns. However, we have already had three additional admits plus 4 days getting diagnosed before commencing the treatment. The kidney infection/mucositis from Oct 27 to Nov 5th added another 9 or 10 days. Then the Hematoma hospitalized him from 11/8 to 11/13 for another 5 or 6 days. (I’m not clear on how they count their “days”). Once again, for the Pulmonary Embolism, he was in from 12/5 to 12/9 – 4 or 5 days over and above the Chemo regimen. So that makes at least 22 additional days already. Ten of those days are already into the $352 dollar per day, And that’s not considering the possibility of transplant treatment. No idea how much is involved in that.

BUT, that is Medicare rules. We have Aetna Medicare Advantage. They work things the other way around. We would pay coinsurance until we reached $6500 “maximum out of pocket” instead of 1364 deductible, but then they pay the rest – except, of course, for anything not covered – and not covered includes “out of network” care which includes SCCA. So they don’t normally cover SCCA bills but they did authorize the growth hormone shots given there to the tune of some $15000 approved price! – per shot times 8 total. $120,000 just for the growth hormone shots! Aetna said we needed to pay about $856 dollars each for them, but then said “it appears these claims are related to a clinical trial so we need the Medicare EOB before proceeding.” Which tells us nothing.

Medicare would charge us a 20% copay of about 3000 each for those shots. Are you confused? I sure am. I have zero information on how the Medicare coverage of clinical trials affects what Aetna pays. SCCA financial told me “Medicare pays 80%, Medigap pays the other 20%.” Ignoring, of course, all the loopholes. But we don’t have Medigap, we have Medicare Advantage, which is not the same.

Enough on our crazy “insurance” system. We also had a visit from UW Studies which at first we thought was related to the clinical trial but turned out to be a study on improving communication regarding future care for if and when the patient is unable to make or communicate their desires. i.e. end of life decisions. This seems like a valuable goal. Poop happens and please plan for some common, ‘what ifs’. During and after are too late.

So where was I? Departing UW after round three. Seaton, once again (bless him) took us home by way of grocery shopping. My shin splints were getting aggravated more by the minute so we only made the one stop. Back at home Dave’s energy flagged. Stuffed nose and sore throat heralded a cold – a scary possibility for cancer patients when their white blood cell counts are dangerously low, but Dave’s are still high enough to make the cold the minor annoyance it is for most. On the other hand, his blood counts are on the way down. Growth hormone shot to put the brakes on that. Afterwards the numbers continue to decline for several days before climbing once again.

Platelets plummeted between Friday and Monday and if they continued down at the same rate, he would need a platelet transfusion before the next check on Thursday. So the check was rescheduled for Christmas day and infusion of platelets scheduled “in case”. The infusion was cancelled, however, as his count had leveled off and was still well above the 75 threshold for infusion. A threshold higher than normal due to his history of bleed plus the blood “thinner” he now takes.

Discussed his shortness of breath (not as severe as before the PE was found) and tiredness. There are SO many things that could be causing or contributing to it. But not hemoglobin – that number is almost a record high for post diagnosis. Decided that it was not yet of concern, but that he should have a low threshold in deciding to go to the ED/ER if it got worse. Got the PICC dressing changed again as it was starting to come loose and the nurse was a bit bored. The infusion department was the only section open for Christmas Day and business was thankfully slow.

Today, Thursday, Boxing Day, we were going to go in for an Integrative Medicine Consult, but it got cancelled and, since the PICC dressing was already done as well as the CBC, we have the day “off.”
I went by shuttle to the grocery store and used their handicap motorized shopping cart. My shin splints are tender just from the to and fro and would not have tolerated shopping on foot.

So, with no ER visits this time, we are doing well. Hope everyone had/is having a wonderful Holiday.

Love, Robn and Dave.

Short Version #2

This is a shorter version of Dave’s Adventure with T-cell acute lymphoblastic leukaemia (T-ALL) which is a type of acute leukemia meaning that it is aggressive and progresses quickly.

EDIT: The really short version on 17 Dec, is that I am almost through with my 3rd round of Chemo and doing really well. 6 to 8 rounds is typical. The medium length version follows and the detailed versions are on separate pages.

Normally, I am getting Chemo in Hospital then I am sent home for a couple of weeks and the cycle repeats every 21 days. I get 96 hours of continuous Chemo into a PICC line. The PICC Line is a tube in my right bicep, that follows the main artery back to 75mm above the heart. This allows the very slow drip of Chemo to be mixed and diluted before it goes into the cells of my body.

As I said, I get 4 days of the main Chemo and then one hour of another Chemo. So, about 5 days of treatment in Hospital and then I am out to recover, then it begins again. Today, 14 Dec, I am beginning the 3rd Round.

But, on 9 Nov, I had surgery for a brain bleed. A subdural hematoma. They cut a 45mm hole in my skull and cleaned out what they could of a 22mm thick, large crescent shaped clot. My body is cleaning up the leftovers, giving me frequent mild headaches. Round two of chemo was delayed for 2 weeks while healing from this.

I have also had several Emergency Department visits that were clearly not expected and I was discharged from Round 2 of Chemo on 27 Nov. The next day, American Thanksgiving, I appear to have gotten a large Pulmonary Embolism, a blood clot in my lung(s). That made me very tired and lethargic, until 2:45AM, Thursday the 5th of Dec, when I woke up with a strange, strong pressure in the area of my sternum. However, my lethargy was gone and I felt better than I had in weeks. Ironic.

Off to the Emergency Department again, where they found several clots in my lungs and legs. They pondered for several days

the idea of giving me ‘blood thinners’. They do not actually thin the blood, but they affect one or more of the clotting factors. This is because, like in a stream with tree branches being carried along, the ‘clot’ does not usually completely stop the blood flow, but as blood leaks around the ‘clot’ these ‘tree branches’ cause the ‘clot’ to grow and grow. I will be on the ‘thinner’ for months, and must be careful not to cut myself.

The various kinds of ‘blood thinners’ make ‘clots’ less likely, but with the history of a large bleed in my skull, you want things to not leak. Catch 22.

They decided on the best choice and sent me home. I am doing pretty well. So well that I walked about 1.5 miles (2.4km) downhill on the way home from our latest check up regarding the brain bleed. But, it was downhill, dropping about 217ft (66m) and after about a mile, my legs were like rubber, so, we had lunch in a restaurant, and rested. When we were continuing it began to rain and we had no umbrellas, so we caught the free shuttle from the SCCA House to our apartment at the Pete Gross house.

My calves are still sore several days later. I overdid it. As most of us have learned, walking downhill can be worse that uphill at times.

This is the ‘short version’ of Dave’s illness, from 15 Oct to 14 Dec, 2019.

Chapter 9: New Twist.

On Mon, Dec 9, 2019 at 10:28 AM robn wrote:

Two Forty Five Thursday morning, December 5th, Dave awoke with a feeling of pressure in/on his chest. It was not painful. It would not have seemed worrisome except that any and all new symptoms are not to be taken lightly when dealing with Leukemia and Chemo – plus, of course, there are constant messages warning that anything of the nature, regardless of other issues, warrants a trip to the ER.

Nevertheless, we called the clinic and were, indeed, directed to go to the ER. He got up to do so, and found the past week’s lethargy and shortness of breath greatly reduced. He felt better than at any time during the past week! Shades of his first trip to the ER when he walked in feeling good and with no fever but with the white blood cell count in the stratosphere. So, despite feeling good, we dutifully took a Lyft to the ER or rather the ED as they call it now.

None of television’s dramatic promptness. Explain symptoms to admit clerk, show ID, sign papers, have a seat. Bounced off the seats as his name was called. Got vitals taken, answered questions, walked to the back of the department to room 14. ER doctor came in and repeated the questions. The head doctor came in and repeated them again. Other specialists came during the ensuing hours to ask yet again.

An EKG was ordered and yet another CT scan and I wish I had been taking notes because I sure don’t remember all the different things they did. There were a lot. Blood test for residual heart attack telltales – negative. Another CT 4 hours after the first for comparison’s sake. Etc.

Unfortunately, they found lung clots. Pulmonary embolisms. Several. And more clots in the leg – the leg clot was presumably where the lung clots had come from. Hematology, Oncology, Cardiology, Neurosurgery, Pulmonology, (and I think some others) were all kibitzing with the ER doctors. Lung clots are normally treated with blood thinners. Period. Simple. Out, finish. At least in cases that are not more severe. The blood thinners do not actually do anything to break down existing clots but work, instead, to ensure they don’t get bigger nor joined by new ones.

But not so simple in his case. Blood thinners increase the risk of the hematoma bleeding again. However, the clots are far more threatening to life than the bleeds, and there was evidence that the heart was being strained by the back pressure, adding to the risk. And the hematoma was still healing nicely. The question was not whether to treat the embolisms, but how.

So for the forth time in two months he was admitted back into 8SA – into a fifth room since he occupied two different rooms before and after the craniotomy.

As usual, they had no empty beds at the time the decision was made to admit, so he stayed in the ER until one became available. In the meantime I took the shuttle back to Pete Gross House to pack and clean and dump the compost, check mail, pay the rent, etc. My packing produced 6 containers of stuff –more than I wanted to deal with by Lyft, let alone shuttle! Dave still did not have a bed and I didn’t want to take everything to the ER, so I waited at PGH until my brother, Seaton, could once again play moving van at 6:15 PM and Dave had, by then, been assigned to 8SA room 8430.

Dr. Dan Martin, hematologist, came to see us, saying that he had spent half an hour looking over Dave’s chart and wanted to be sure his summary of the history was correct. He had a basically good grasp but we filled in some gaps – like the fact that he was feeling sooo much better after the chest pressure incident.

Dave’s theory is that a clot or clots was/were robbing him of a great deal of oxygen during that week but that at the time of the pressure, they moved to a less compromising position, freeing up access to oxygenate the blood. They all seem to agree that this is a plausible explanation.

But, just because he feels so much better does not mean that the danger is over. They started him on a low dose of IV heparin keeping a sharp eye, through frequent blood tests, to be sure that the level did not go higher than necessary in order to reduce the risk of a new bleed in the hematoma, while still being therapeutic. But, IV heparin is an in patient treatment. What to do when outside? After spending an hour or so discussing options and symptoms and risks, etc., he said he would sleep on it, do more research, and cogitate as well as consult. He would probably be back around 11 the next morning.

We didn’t see him until around 3:30. He again commented that Dave’s was a tough case, a tight rope walking challenge. But he had decided to recommend a relatively new drug, Eloquis (Apixiban). He felt the risk of a bleed would be acceptable – as low or lower than the alternatives. But since it is taken twice a day 12 hours apart, 9 AM and 9 PM seemed a good time. So he is staying on the heparin until 9PM and then switching to the Eloquis. We will then wait a while to see if there are any negative repercussions, before heading home for the last few days before round three of Chemo.

In the meantime we have been continuing to tackle bits and pieces of the mountain of research we want to do. And walking laps. 1 1/3 miles Friday, over 3 miles on Saturday. Sunday, he wanted to do a mile but we got interrupted after 3 laps and then again after another 4. Then made it – a full uninterrupted mile. Total 6 1/3 miles in 3 days. Sure is good to have him feeling so well! High time to have that at home! I went down to radiology records for a dvd of his test results. They didn’t fit on one, so they gave me two plus all the write ups. Since I didn’t bring the DVD player, viewing will have to wait, but I’ve been attempting to read the write ups in the meantime. Then one of the Doctors showed us the most recent CT head scan (when we asked) and it sure does look a lot better than the pre and post surgery scans.

Coming up in those next few days we have an appointment with Dr. Levitt to revisit the option of an artificial embolism in the brain bleeder. We were thinking that perhaps we should not have been so quick to celebrate not needing it. After seeing how well the hematoma has improved, (assuming we are understanding what we are looking at), and despite the headaches, we are not regretting the decision. But given the clots and the blood thinner, we are open to rethinking it.

Discharge planned for Sunday afternoon. Since the pressure that brought us in, the headaches had been very negligible, and the fatigue and shortness of breath gone. There was an appointment with Integrative medicine to talk about what is available among other disciplines – like acupuncture, meditation, etc.- on Monday that we wanted to keep. This appointment is only available out patient and we have been spending so little time out that it has not yet happened.

Well it turned out that it had been cancelled when he was readmitted so that reason for discharge was gone. And then – another headache. And a very minor rash. They both failed to become a cause for concern, but we were glad they occurred before we were home alone. A nurse who used to work in neurology and has much more familiarity with CT scans was asked to show us more and gave us a great tour through the scans. Her tour was very convincing regarding how well he is doing and explaining that recurring headaches should be expected for weeks but will probably end eventually. Nothing to worry about unless they become too strong or frequent – which, of course, is always the unknown qualifier. How strong, how frequent is too much? Still, it was very reassuring.

We did postpone discharge for a day due to the headache and rash but Monday morning, with no new developments, the paperwork has been put back into motion and we plan to leave this afternoon for a brief stay outside before Chemo round three on Friday.
We met a fellow patient doing laps. A young woman of 27 airlifted from the tri-cities due to a leukemia related emergency with her lungs. Her husband did almost all the talking as she spoke only Spanish. I don’t know how much she understood, and maybe she was only too shy to try English. There was something about her expression that made me ask if she was neutropenic. No. In that case, would it be okay to offer a hug? He said yes. I held out my arms and she sank tearfully into them. We were doing laps in opposite directions and every half lap as we passed we would hug again. That’s a big part of what’s wrong with this world – not enough hugging.

Virtual hugs to all of you.

Robn

Chapter 8: a quiet week

On Sat, Dec 7, 2019 at 8:54 PM Robn wrote:

And a rather boring journal entry for those suckers interested in such minutia.

Thursday, Nov 28, 2019, American Thanksgiving. Dave wasn’t interested in socializing nor feasting. Nor was I. Round two of Chemo had gone fairly smoothly, but then, most of the problems do tend to come afterwards. We were somewhat nervous, unsure what to expect. Hopeful, thankful, but too worn down to be in a celebratory mood. Dave was still experiencing headaches. They weren’t all that strong, but they were getting more persistent. More frequent, longer lasting, more annoying. He was also simply tired. Hard to pin down exactly what it was – was it really just the anemia? A lack of sufficient red blood cells?

Or was it more discouragement? Tired of not feeling well? Or was it PTSD? Worry about coming side effects? Was it grief at the loss of our previous happy busy life style? A combination of several or all factors? Thursday was pretty much a do nothing day. Snacked rather than feasted. Listened to Harry Potter. Napped. Watched a Star Trek movie. Debated how to deal with minor symptoms. Wanted to stay off of any unnecessary drugs if at all possible and hence cut back on the ones for heartburn and nausea. But what is that niggling discomfort? Didn’t seem like either, didn’t seem worth taking drugs for, but also added to the loss of quality of life and willingness to do anything. After a couple of days of that, he finally decided that it was premature to cut back. That there were enough problems to deal with without adding that niggling discomfort. So he added them back in and gained some relief.

But what a cocktail! For someone used to taking an over the counter remedy once every few years, it is hard to face so many pharmaceuticals at once.
In the morning:

Acyclovir to prevent getting a viral infection.

Fluconazole to prevent fungal infections.

Tamsulosin to ensure proper urinary flow.

On Mondays and Tuesdays, Bactrim antibiotic to prevent Pneumonia.

As needed: Zofran to prevent nausea.

As needed: Omeprazole to prevent heartburn.

Then in the evening:

Acyclovir again.

Levofloxacine antibiotic. This one really makes me cringe but the doctors say that too many patients who didn’t take it had serious life threatening problems.

Bactrim antibiotic again Mondays and Tuesdays.

Metoprolol for heart rate steadying.

As needed: Zofran again.

As needed: Omeprozole again.

In stock and available but not being taken:

Senna to prevent constipation.

Polyethylene Glycol for constipation.

Magnesium Citrate for constipation.

It took all three in combo to end 10 days of no movements.

Lorazepam for nausea. (Ineffective)

Prochlorperazine for nausea.(Ineffective)

Simethicone for Gas.

Loratadine for bone pain. (Helpful when needed)

Famotidine (pepsid) for heartburn. (don’t remember)

Baclofen for hiccups (caused by Zofran – they were VERY painful when he had mucositis ).

Gabapentin for anxiety. (No way – they caused panic attacks!)

Dilaudid for pain. (Helpful, but luckily only briefly needed.)

Oxycodone for pain. (Helpful, but luckily only briefly needed.)

Tylenol for headaches (ineffective).

Zyrtek for itching.

!!!

The Zofran and omeprazole he is hoping to wean off of. Considering the list of drugs that he had been given and has available “in case” which he is NOT taking, I guess we’re doing okay. It is hard to accept that the immune system is no longer there to prevent a huge host of potential problems and that, like it or not, these antibiotics, antivirals, antifungals are now taking over while the cancer is being dealt with. The others are to deal with the side effects of the Chemo drugs with constipation and nausea at the top of the frequency list but by no means being the only ones. There are several for the same side effect because some were tried and found ineffective. Others were needed in combo to be effective.

Friday we were supposed to go in for routine blood labs and the growth hormone shot which jump starts the bone marrow back into blood cell production. But the headaches were getting more frequent, longer lasting, and stronger – or at a minimum, more annoying. He was also feeling lethargic and fatigued. Given that these symptoms had preceded the discovery of the Subdural Hematoma, albeit milder than before, we were instructed by “the team” to go to the ER instead.

There they did another CT and found what they led us to believe was a very small fresh bleed. Later, we learned that it was not small.

Also another EKG. Then the CT was repeated 4 hours later and looked slightly better than the first. With a lot of consulting and comparing to previous data, they decided that no intervention was called for. That it would be better to continue to let the body heal on its own. Dave’s heart rate was hard to measure due to an Atrial flutter, so they advised taking Metoprolol again, but half what he was taking before. Don’t want to go back down into the 30’s heart rate! So this time he was not admitted and was sent home. Thought that heart issues might be the cause of the fatigue.

Saturday we went to the clinic for the delayed growth hormone shot. Afterwards we walked home, which included some minor hill climbing. Numbers are dropping but I’m getting more confused about their significance. What the numbers mean, what they should be, what the Chemo does and what they want it to do (not always the same). I thought I had been told that the goal was to get the white blood cell count to zero, but now I’m told, no, that’s too dangerous. Just want to reduce them. I’m guessing the question is what constitutes “them”, what exactly do they want to get to zero – if anything? Neutrophils (a type of WBC) were down to zero first time around but not the total WBC. Hoping to get a better explanation when we see Dr. Cassaday again – or his assistant.

Sunday, we walked down to the tram, shopped at CVS, then rode the tram to Whole Foods for some groceries and returned. Perhaps 3/4 of a mile of walking with a bit of elevation change. Dave wasn’t up to more. Wish we understood this roller coaster better. Tuesday and Wednesday before thanksgiving he had done 2/3 mile each easily, but go home and it’s a huge effort.

Monday, Seaton (my brother) gave me a lift to pick up a handicap parking placard, which we will probably never use, but appreciate having available if Dave needs it. He stayed home since he didn’t feel up to multiple errands. After getting the placard, we stopped for groceries and other needs, and then got some more stuff from Riva – including my puzzle board since doing a puzzle on the carpet just doesn’t work and we have no other free space.

Monday night I slept solid. Very unusual for me and I have no idea why this was an exception. I hadn’t had a stressful nor exhausting day. Often, this past 2 months, I had gone to bed, slept soundly for one and half to two hours and woke up thinking it must be morning. I honestly thought it must be about 6AM as I felt no more need for sleep. It wasn’t even midnight yet! Couldn’t get back to that type of sleep and only dozed, impatiently waiting for dawn. But Monday night I slept solid and long, with not even a trip to the toilet. Didn’t get up until around 8 instead of 6.

Tuesday, another trip to the clinic for more labs and a discussion with a nurse. It might not make sense at first glance to be doing labs so frequently but the deal is that they are killing off cancer cells and the process kills off other cells as well. If red blood cells get too low they need to give donor red blood cells but that has its own risks, so they don’t want to give more than needed. The threshold for hematocrit is generally 24 – compared to the normal range for men of 38 to 50! No wonder he is tired. Platelets are normally 150 – 400 thousand. Having less puts you at risk of bleeding but they don’t give platelets unless you drop down to about 10 or 12 thousand! His platelets are currently 49 and hematocrit 28. Perhaps a transfusion of RBC’s would help with the fatigue.

But, on later reflection he had many days with lower hematocrit and more energy. That didn’t seem to be the answer.

White blood cells have dropped from a high of 10.8 (48 hours into the Chemo) to a low of 0.59 on the 3rd of December – three days after the growth hormone shot on the 30th of November – at which point they started climbing again.

Headaches still there, interfering with any interest or will to be up and around, although (as noted) not so bad as before the hematoma was found. Lethargy also present. Kind of hard to get enthusiastic about anything when you are afraid that moving will make your head split. But the lethargy is more than just worry. Exertion brings more shortness of breath than it should.

By Wednesday he had his fill of putting up with the headaches and tried Tylenol. It is discouraged due to masking fevers which are vital for signaling infection, but he tried it – with no effect. Well, he would protest louder during Thursday’s clinic visit.

During all this, we were trying to figure out just how good his insurance is partly because there was still barely time to look for a better policy if needed. Yeah, right! We are finding it no easier now than when originally shopping. We get cryptic messages saying “such and such” has been approved. No idea at all what “such and such” is. No information about whether it is covered in full or requires a co-pay or co-insurance. We did get an indication that he owes 1800 for something. With a lot of sleuthing, we have finally decided that it is the 360 dollars per day for hospital bills for the first 5 days in patient. After 5 days, they pay – until some other magic hard-to-decipher period kicks in. Interesting how the majority of inpatient stays are 5 days. Then they discharge you until the next event. Where upon the $360 may or may not start all over again depending on “benefit period” maximums.

We got a call from someone telling us that he was having trouble getting authorization from the insurance company for exploring transplant options – not actual transplant bills, just exploring options. Third try apparently was successful and it finally got authorized.

In the process, however, we discovered that the insurance company was objecting because it involved Seattle Cancer Care Alliance. "Not an approved provider." Uh oh. We are doing a lot at SCCA. But, but, the first message we got from them was an approval for a drug to be provided by SCCA!?? (A drug we haven’t seen named anywhere else and have no idea what it is.) Maybe the growth hormone shot? But we think that is something else. Go figure.

Anyway, come to find out, the insurance company has an agreement where by IF you are part of a clinical trial, then all the clinical trial bills go direct to Medicare and not to the insurance company. We have been TOLD that in the case of a clinical trial, Medicare covers everything – no co-pay nor co-insurance. But we have not seen that in writing anywhere. And with the typical long delay between service and the patient’s share of the bill being presented, we still have no idea what this is all going to cost.

If Medicare is getting all the bills, then what was the 1800 for? $360 per day co-insurance for 5 days inpatient services. But at least one of those days was part of the clinical trial. That one claim showed the hospital billing $133,118.20. Aetna approved 15,601.40. Paid 13525.37. Leaving the 1800 for us. And the other 117,516.80? Apparently a “discount” of 88%! Okay, crazy but believable, but then what happened to the 276.03 that they didn’t pay and say we don’t have to pay? Their payment of 13525.37 plus ours of 1800 only add up to 15,325.37, not the 15,602.40 that they say the hospital is due. Go figure.

There is no mention yet of any claims for the craniotomy – 4 weeks after it occurred. Will that be considered part of the clinical trial or treated as unrelated? Who knows. I guess we can’t prove that it was due to the Chemo and not directly by the Leukemia, so perhaps it makes sense for it to be separate. Nevertheless it still leaves everything so damn vague and unmanageable. There is not a bloody thing you can do to ensure your bills are minimized let alone manageable. You go bankrupt or not after the fact. We are hopeful, regarding the costs, given the info to date, but still leery and unsure.

Still, the main thing is that his vital signs are still good, the hematoma is slowly resolving, the headaches aren’t fun, but they are tolerable. We are still feeling positive about the leukemia treatment and looking forward to beating this.

Here’s to health!

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

Chapter 6: good news

Subject: Chapter 6: good news
To:

I found a parking spot close to our lodgings and unloaded more stuff that we might want. I had to pay for an hour and a half but after that the parking is free until Monday morning. So Sunday we will have time to find a longer term solution. Except we didn’t. I bought some more time Monday morning so I could go and check if we could park in one of Fred Hutchinson’s parking lots – one seemed to be underused and very close by to the clinic. But no. Day use only. Check with SCCA. No, but there is a Public Storage business at the bottom of the hill. They weren’t open yet so I would have to ask later. Meanwhile Dave had found that if he got a disabled parking permit we could use street parking for 72 hours at a stretch but getting the permit might take till the end of the week – at which time he would be back at UWMC and we had already figured out how to deal with it there.

The Public Storage business offered the first month for only 25$!! but subsequent months would be $190 (I think) – only it was at a sister business in Bellevue. A long way away, and hard to get to and from by bus. When we finally got through to the local branch (just down the hill from the clinic) they said we could park her there for a few days for free while figuring out what to do!! I took them up on that offer.

Sunday we had done little besides eat, sleep, sort through Riva for anything else we wanted handy, and listen to Harry Potter Methods of Rationality by Eliezer Yudkowsky based on the books by JK Rowling. About 60 hours of excellent listening. This is our third go at it!

Monday: Standard trip to the clinic for blood work, followed by a consult with the Nurse where she checks for other symptoms that the lab work doesn’t cover, and reports the lab results. A Plus! All numbers continuing to improve. All (except Hematocrit) are in the normal range, and Hematocrit is in an acceptable, expected range. There was another number listed as being high, which I asked about. She insisted that that was of no concern to us – only for the doctors to consider. I think that meant that she had no idea what it meant. Also on Monday, in addition to parking research, we found a nice Thai restaurant, less than 2 blocks away! Best food in a long time, not counting the home made juices and smoothies. Took a nap. Got laundry done. Had a nice shower – which is more complicated than normal.

A PICC line is a special IV set up that runs two lines from the bicep to near the heart so that blood draws and infusions of antibiotics, fluids, and blood products can all be done without constantly sticking one time needles into him. This has to be kept scrupulously protected to avoid infections. So when taking a shower, each terminal has to be wrapped in a special wax sheet and then the entire assembly, bicep and all, wrapped in Saran Wrap and taped thoroughly to make it water tight.

Riva is a liability in the city. Nothing but hassle. We have no need of her for the duration, but getting her to her rented storage spot in Port Townsend would require a long day of traveling – some 2 and half hours to drive there, then wait for the 3:15 bus to Poulsbo, another bus to the ferry, the ferry ride, another bus to the house. Home about 7PM. There was NO way I could leave Dave to do that before, but Tuesday seemed to be an option. Or we could leave it with friends north of Snohomish. Or with James and Annick, but they are trying to sell their place and having Riva parked there would not help with that. Or with friends in Bothell, just north of Lake Washington. An easy bus ride back, and not so far away. Perfect!

We chose the last option. So Tuesday morning I went to retrieve Riva from the storage facility only to find that, ‘due to a district meeting,’ it would not open till after 11:00. Oops! I had, indeed seen the sign, but did not register its impact on my plans. Good thing we had decided against the long trip to Port Townsend – there is no way I could have done it with a start that late. Dave was planning to come with me and visit with our friends, but when the time came, he did not feel up to it, so I went alone. With Riva safely settled, we were ready to face the tight schedule set up for Wednesday, Thursday, Friday.

Wednesday: CT scan at HarborView. Allowed an extra 15 minutes just in case and barely made it in time. Our App for Lyft failed miserably. We told it we wanted a pick up at SCCA house. But it seemed convinced that the SCCA house was a block away – even when we gave it the actual street address. It kept replacing that address with the one it wanted! So we walked over to that address and then it quit altogether. Walked back and had the clerk at the house call for a yellow cab. We arrived 2 minutes late, but that was OK, just annoying.

Had the CT scan done. I watched the image appear on the screen, a movie image that lasted only a second and, of course, I’m no radiologist, but it looked good to me. Fingers crossed that I was not missing something. Next was a meeting with Dr. Levitt’s assistant who asked about what meds Dave was currently taking. Oops. I had failed to bring that info although I should have known to do so. They had given some pretty specific instructions, like saying that a light meal was okay before the scan, but no reminder to bring drug info. And, no surprise, the HarborView computer system could not see the UWMC Rx list. Why can’t they talk to each other. This is an on going problem, with many Medical Systems.

We figured out some of the drugs and had some maybes and then she left and we waited for another assistant. All this preparation for admittance for a procedure that might not be needed. Seemed kind of backwards. First determine if it is a go, then do all the prep, no? It sure gave the impression that they planned to do it regardless – just to be safe and to make some money.

So then the assistant came in and asked a whole lot of questions about symptoms and Dave admitted every little conceivable hypochondriacal symptom and then Dr. Levitt finally came. He said he had good news and then explained what his procedure is and why it is done. Sure sounded like this would be followed by the good news that Dave was an excellent candidate for the procedure and he was sure it would be well worth doing.

But, hallelujah, Dr. Levitt won our enthusiastic respect when he said that Dave’s latest CT showed so much progress in healing that there was no call for doing the procedure – at least not at this time and likely never. He wants to keep an eye on it with another CT in a month, but expects good results then as well.

High Fives. Time to celebrate.

As a result, all the subsequent appointments made for the procedure became moot and were cancelled. We did get to meet with Kendal who had done all the scheduling, assured her that any time a month from now would be just fine by us as long as it was fine by Dr. Cassaday. We also thanked her for all the work she had done organizing something on a just-in-case basis. There had been a lot of juggling, due to the tight schedule and several Drs involved. So Thursday, with the procedure cancelled, was free for a final rest before starting round two.

As if that whole schedule wasn’t crowded enough, Dave had discovered that the Pete Gross House offered better accommodations than the SCCA House – for our purposes. It is only available to people in treatment needing long term accommodations and generally has a long waiting list – we were told. However, it is about half the price, and includes a full kitchen in each unit, whereas the SCCA House has only communal kitchen, on the 2nd floor, with 7 stoves, 8 sinks, 2 freezers, several refrigerators, and 2 sterilizers. Cooks must wash dishes, then sterilize for 3 minutes, then, wearing disposable gloves, dry with paper towels and put away. Clean all surfaces with disinfectant. The rental units each have a microwave and a coffee pot and small under counter fridge. No other heating equipment allowed. We prefer to be able to cook in our room.

The two facilities work together, serving different needs, and we felt that the Pete Gross house would better serve our needs. Still do not understand why we had not heard about it before. Once we had accommodations at the SCCA House, we found out about it because it is listed on the shuttle schedule. But that gave no hint to its nature and advantages. Having heard a bit more from a tenant on a shuttle ride, Dave called. He explained that he was already in treatment and would be for an unknown duration of at least a month and could he get on their waiting list for a studio?

They called back and said he could move in Thursday or Friday! This was on Tuesday when we still had no idea whether Thursday would be filled by the super glue procedure or not. Friday was definitely out with Chemo starting. No can do. They called back and said he could come Wednesday morning – before the CT scan. We jumped at it. It seemed to be taking on a lot but we did not have to move out immediately. We would have both places as long as needed and could move as able. Such is their accommodating attitude. Of course, we would be paying for both until we could vacate SCCA House.

So Wednesday – before getting the good news about the CT scan – we had already signed up for the studio which turned out to be palatial by our standards. It does, indeed have a full kitchen – complete with dishwasher cookware, settings for 4, crockpot, coffee pot, blender, toaster, microwave, stove, oven, full size refrigerator, etc – most of which we will never use! – and almost no place to put food other than the fridge! That’s okay. Not complaining. It also has a washer/dryer, a portable A/C, iron, ironing board, etc. It has twin beds, twin lounge chairs, twin table chairs, table, TV/DVD, computer desk, night table, chest of drawers, 2 lamps providing softer lighting than at the house. What have I left out? Telephone,towels, linens also included. Does NOT include any clothing. Jeez! The bathroom is not a handicap bathroom but it does have a grab bar at toilet and tub – not in the tub but just outside it vertically that can help getting in and out. That is fine with us.

We spent Wednesday night there and finished moving out of the house on Thursday. We are still welcome, as are all tenants of the Pete Gross House, to attend activities and free meals at the house and use the exercise equipment, etc. As I said, they cooperate with each other. They have separate shuttle services to the clinic, but often make detours to accommodate trips between houses. The new lodgings are about half way between the old and the clinic – an easy walk (at least for the healthy). Turned in the keys on Thursday and got a rebate on rent already paid. No hassles with lack of notice, or anything of the kind. We are really impressed with our entire experience with the SCCA. SOOO much better than anything we had ever experienced or even heard about regarding American health care.

Thursday was moving and shopping. Made a trip to the grocery store by shuttle for supper and breakfast things even though we were checking into the hospital the next day. Friday went smoothly. Getting the hang of showering with a PICC. Had celery juice, then carrot juice, then oatmeal with apples and raisins for breakfast. Later a blueberry, banana, apple, spirulina, barley grass juice, and dulce smoothie. Dealt with some miscellaneous bureaucratic tasks. Caught the shuttle to the clinic with several bags of stuff for our hospital stay, got blood drawn, PICC dressing changed – just in time as it was about to fall off!, then a visit with Dr. Levitt’s assistant and then he, himself. Admittance delayed due to lack of beds, but no worries.

Everyone impressed by how well he is doing since they had last seen him at the low point just before the hematoma was found. So now we are sitting in the family room outside the 8SA waiting for a room. Expectantly hopeful that this round will go far better and more smoothly than the last.

Cheers, Robn

Chapter 5: A break.

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.

I saved the above at 5:05 AM and went to sleep. About 5:40 I awoke to find that Dave had used his urinal in bed to pee and then called the nurse to empty it. (Usually my job, but I must have been non-responsive in my sleep.) When she was there, he inquired about a walker, and they did a lap. His first lap in several days, albeit with the walker – and I missed it. My pleasure at the event outweighed by far my disappointment at missing it. Ah, the little things that one develops appreciation for!

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??!!

^^^^^^^^^^^^^^^^^^^^^^^^^^

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.