Subject: Chapter 6: good news
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.