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!


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