Monday, July 5, 2010
Rick's Log – the Tabletop Diary, May13-24
Mary writes: it has come to our attention that we have not been keeping this blog up to date. Sorry. Today will begin a series of entries going back to mid-May, from Rick's writings in the tabletop diary, which we hope will bring you up to date. Oh, and the picture is of most of Rick and our dog, Jive, "sitting pretty."
Before we went to our monthly meeting with Dr. Oliver today we put together a list of questions about what the future holds for me, treatment-wise, and it tentatively came to this:
Peritoneal dialysis (manual exchanges) with over-night cycler treatments are not possible. Dr. Oliver wants to make one last call to the PD folks to discuss a possibility for continuation but for the most part it no longer appears to be an option. As it stands, it seems like the only route left is to keep on with hemodialysis 3 days a week in West Seattle. Forever.
She wrote us a letter to give to Jeff Lakin (manager at District 19) approving a return to work on the non-dialysis days (Tuesday, Thursday, Saturday, and/or Sunday), whatever that may be. If those days changes, work days will have to change also.
I'm going to give it until next week to bring up with WD #19. By then we should have results back from PD's decision, yea or nay. Then it will be up to WD #19 to decide if they want to keep me on under those conditions.
If PD's decision is final not to continue that form of treatment, there will be one last surgery to remove the PD catheter and one last recovery period.
We thanked Dr. Oliver for all her help and for saving my life when I needed it most. It appears the PD people hold all the cards and they appear to be inflexible. Living or dying of renal failure is my problem now. Their choice and their decision is to live by their rules.
I sure don't want to play on that team any more. Meanwhile, we're going to stick with Dr. Oliver.
So much happening. Too much in the last five days to even find the time to document it. Where to start, or re-start? It may as well be today.
Mary: on 4/27 she had a needle biopsy of her breast to check out a tumor which was not malignant (probably) but was “atypical,” requiring closer inspection as well as excision. This is “the bulge in Mt. St. Litchfield” she is having done today which, coincidentally enough is the 30th anniversary of the eruption of Mt. St. Helens.
To assist us, Sonya Norton drove up last week for a visit and to provide a friendly, stabilizing presence to help offset the mounting chaotic series of events that seems to be endlessly buffeting us hither and yon through the pinball machine of what has become our lives lately.
Today I'm recovering from yesterday's hemodialysis which began with a painful needle infiltration of my fistula, causing another hemotoma. The last time this happened was January 27th and it's no more fun this time than it was last time. Yesterday I went straight away into low blood pressure and nearly passed out; then spent the remaining four hours in a state of semi-conscious pain.
Before this happened, I got a call from long-lost Angela from Sea-Tac PD. Haven't heard from her since 4/22 when I flunked out of cycler training due to unreliable PD catheter performance. Angela was horrified that in her absence no one from the PD program had made contact with me during the whole catheter repositioning until Angie (not Angela) called me on 5/6 to have me come in on 5/11 to have the repositioned catheter flushed.
We all remember how that turned out. PD staff disappeared once again and everyone from Dr. Pham to Dr. Oliver sadly concluded that peritoneal dialysis was no longer an option for me. The next and last thing for me to do was have another goddam surgery to remove my PD catheter and I'm bumped back to hemodialysis for the rest of my life!
That was last week.
Hemo is very debilitating. Dr. Oliver said in her letter to Jeff Lakin that I could do hemodialysis on Monday, Wednesday, and Friday; then, instead of recuperating, I could work Tuesday, Thursday, Saturday, and Sunday.
To me, this sounded like a recipe to kill me off as quickly and painfully as possible but of course that wasn't true. It just wasn't what I had hoped for. Throughout this whole process of learning to live with an incurable disease, my imagination has been my own worst enemy. It's only good for rehab; not at all for planning the future.
So – yesterday morning at 0905 a nice lady at the Polyclinic calls (Dr. Pham's office) to tell me that Dr. Pham is out of the office until Wednesday but she would like me to consider an option to what appeared to be her unconditional surrender last week on 5/11. Not surprisingly, the option turned out to be more surgery! Not a mere repositioning of the PD catheter this time. She's talking about tearing the whole works out and completely replacing it. It was just the kind of bold, radical solution I was ready to consider, especially after the miserable, painful experience I had later that day at hemodialysis with the infiltrated needle.
So – on my way to the ferry, I took Dr. Oliver's now superseded letter of approval to return to work and dropped it off with WD #19 so they could have it in their records. It will change of course after my next surgical procedure which, if it succeeds, will put me back on track for continued PD treatment as well as a return to eligibility for use of the cycler.
Mary's home from her surgery, in bed stoned out on painkillers and doing well.
I spent Saturday recovering from Friday's hemodialysis and on Sunday we all went to Allysan's 8th birthday party at Dockton Park. It was fun and Nycol did a great job putting it together. It was also the only opportunity we had to see Allysan this weekend.
The hemotoma I got last monday is not as visually dramatic as the one I had last winter but it sure makes hemodialysis more difficult. The techs have a hard time finding the fistula beneath the swelling and so have to use a stab and hope technique which, coupled with two more hepatitis shots today, is making me feel like a voodoo doll.
Yesterday about 4 pm the dog went off and when I went to check I found none other than Rick Cote at the door. He and his wife Ellen and two boys, Aaron and Zach, lived here in the Park when the kids were growing up, during the 80s. They packed up, sold the house back when real estate was still real, and moved to Spokane. Now Aaron is about to get a post-grad degree down in LA and Zach is living up in Bellingham. Like all of us these days, Rick is just a little older and grayer, and we had a nice visit.
Bad dream last night. I was hired as a utility locator without notification and sent straight into the field without any training since their records showed I had received training in 1997. I had 5 locates to do and screwed up all of them because I knew nothing of the new formats, causing me to get into immediate hot water with a supervisor. He said I was the worst locator he had ever seen and was like something out of his worst nightmare. This triggered a sense of recognition in me and I realized immediately what the solution to the problem was. We were both having the same nightmare but I was the only one who could solve it. I thanked him for his managerial insight and said good-bye. As he began to erupt into a raging temper tantrum, I woke up.
(Mary's note: Rick is a lucid dreamer, which means he can be conscious of having a dream while he's having it and direct the action in the dream)
Alice Orr came over at 1000 to take Mary to Swedish for a check-up to see how her surgery site was doing.
Meanwhile, I called Dr. Pham's office to find out what's been going on since I received the call from her office on 5/17/10 asking if I would consider surgery to replace the PD catheter. Dr. Pham is considering moving the catheter from its present location on the left side of my abdomen to the right side. Radical! (note: this is left and right as Dr. Pham looks at Rick, so to him it will be a move from right to left. Don't think about it too much)
I called Angela over at Sea-Tac PD to fill her in on the latest details, just to include her in the loop.
It's been busy so far today. The VA called with a recorded message which was kind of a surprise.
5-24-10: Mary gets pathology report on removed lump. NO CANCER. Woo hoo! Big woo hoo! An early birthday present! Yaay