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.

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