She's Coming Back

This is Rick again-

Diane asked me to do another entry.  She is pretty tired out, but she is definitely doing better.  This is primarily associated with the cell counts going up.  The nurse told me she had turned the corner, would be steadily improving now, so that was really good to hear.  (By the way, these nurses seem to be the nicest people on earth.  They are incredibly kind in their care and treatment, always asking if there's anything else they can do.)  

I asked the angelic nurse what the exit criteria was.  If I understood correctly, it was: 1/ cell counts above a certain level; 2/ restored food intake (she has no appetite now, is getting nutrients through IV, can't go home that way); and (kinda scary) 3/ only 3 antibiotics administered by IV (this is what I'm not sure I got right, but we're still a ways off from exit, so I have some time to check that out).  

Diane learned early on that I'm the kind of person who needs things pointed out to them.  So when I arrived at the hospital today, she asked the classic question (in our home anyway), "Notice anything different?"  Then she pointed at the wall (which I needed).  Sandy Hamilton had  worked with Darren to get some photos of family and friends blown up to near-poster size at Kinko's and mounted on the walls.  Diane has been looking forward to this for several days, and they are fabulous.  Sandy is another angel.  She could have been a nurse.

Look, Ma, No Hair!

I knew it would happen but not exactly when or how, but yesterday afternoon I could pull out my hair in clumps. And my nurse then jumped in to offer to shave my head. At that point was a relief to have that part behind me.

Yesterday my PT coerced me into sitting on the edge of the bed and encouraged me to get out of the bed and into my chair as much as possible. I have been in this uncomfortable bed full time for several days. So when Rick got here, he helped me into my chair and I spent the afternoon and evening in my chair, That wasn’t all that comfortable either – there’s no place like home – but was better than the bed.

I think about how poorly I was feeling last night compared to this morning: I actually feel kind of perky. I’m looking forward to when all the feeling so bad is behind me.

In Her Stead

This is Rick posting today, Diane's not been up to it these past few days-

Let me start by saying, I don't know how I would deal with the difficulties Diane has endured, pick a starting point: the past two days, past 2 weeks, months, years, or decades. It is not her style to complain or to give up. She somehow endures each increment of this progressive disease while still caring about others and, where she is able, contributing to their well-being. She is the strongest person I know.

Right now she is at the low point of immune system function. She's got an infection of some kind, which is what happens to most transplant patients. This is being treated by antibiotics going in through the IV in her chest. She runs a fever between 1 and 3 degrees (F) above normal, which tends to drain the energy out of people with this disease. She is also at the point in this treatment where nausea become a lifestyle. The medications that work best for that pretty much knock her out, so she tries to thread the needle between being asleep and sick, in order to do some physical therapy, eat, etc. So this is Day 3 of that routine.

I know many people have been wondering if there are any ways to help, what they could do, and the options seem very limited. That has often been my dilemma as well, because the things I can do are ways to cope, not ways to reverse the trend. What has been important to Diane for as long as I have known her is that she be and feel understood. So just tuning in, whether in person or in correspondence, is a gift of friendship she always appreciates.

Besides that, Diane has mentioned a couple of specific things that she would enjoy:
- She would like some decor in her room, maybe some pictures or artwork that makes it less of a basic hospital room of white walls and stainless steel equipment.
- If people come to visit, she said she would enjoy someone reading aloud. We don't have much material here, so you could bring a magazine or something short and interesting. Humor may be the best genre, or something on the lighter side. (Diane input: Graphic novels, although very popular these days, are not quite the right fit.)

Thank you all for the friendship and support. Again, pick a starting point: days, weeks, months, and with many of you, decades. Your enduring love for us helps keep despair from being the only option in this world.

Hey, It’s My Birthday

Got my Stem Cells today! Was sort of a weird non-event event with strange sensations as the pre-meds went into my line (Benadryl caused warm tingling; Prednisone caused a rush and a yucky taste). Half an hour later, at 1402 hours, the first of two little bags of what looked like plain old red blood was infused, then a second bag. 1427 hours marked completion.

The sensations as the cells went in were mostly caused by the preservative in which the cells have been stored. But I had a few: my throat felt tight; my stomach was not nauseous but felt knotted and an anti-nausea med helped. I had my tag-team nurses with me (one was in training) and the tech who brought the frozen stem cells and some sort of a thawing contraption that sounded like a drum kit. (My back was to him because my lunch had just arrived. Believe it or not, the surreal-ness of this picture is not complete without recognizing that I had just begun to enjoy some fresh fruit, vanilla yogurt, and toasted bagel while watching an old episode of “The Office” on Netflix.)

Anyway, my nurse said I did great! My Physician had said the same thing earlier in the day about how well I did with 2 days worth of ATG, an animal antibody given to kill off immune cells that cause autoimmune diseases. He’d been worried and was relieved that I did so well; my main reaction was a rash at the top of both knees. So I guess I’m a pretty good patient. With the Benadryl, I had a pretty sleepy afternoon, but still was really happy to see Rick when he came. TOMORROW IS HIS BIRTHDAY!

Anyway, it’s getting late and I need to get this posted. Thanks for listening!

What a long, strange trip - and only 5 days

The first few days of chemo were a piece of cake. Cindy Potter came for a fun visit on Friday afternoon. And then…

Must have been Saturday the nausea and loss of appetite hit hard. Then the anti-nausea med made me sleepy. So i feel like I have lost days. Then yesterday another IV infusion (ATG) was added that does a real number on the body; it’s given with benadryl and prednisone because everyone has some reaction to it and I got a rash on my thighs – not to bad and not itchy at all. And I’ve had a constant headache for a few days. So I just don’t feel very good.

I’ve gotten my last chemo. Just have one more infusion of the ATG for several hours today. Then tomorrow I get my cells.

A Room with a View Part 2

(Most of you did not get notice of the previous posting because I’m working on my new laptop and had to generate a new Group email list,)

The view was incredible: eastward I could see the south part of Husky Stadium; all the way across Lake Washington; the 520 Bridge and southward; the Bellevue skyline; the sunrise. It was such a wonderful room - but hopefully my memory of it will fade quickly because today I had to move. Turns out that room was one of only two special rooms with a special air circulation system needed as an extra precaution for some infectious patients and its use for that is the priority. So now I have a view down a street with lots of trees and the tops of some UW buildings: not so bad. What I miss more is the openness of that room because it was more wheelchair friendly. Anyway, the rest of the protocol is the same.

So, I’m at University Hospital in Room 8248; phone, 206-598-3921 and this will be my home for the next several weeks (three is the minimum). I am getting used to a new way of numbering days: today is Day -5 and I will continue having chemo drugs infused through Day -1; on Day 0 my stem cells will be infused; on Day 2 or so, my blood cell counts will actually be at their lowest and I can expect transfusions of platelets; Day 4 is when many transplant patients come down with mucositis – “the painful inflammation and ulceration of the mucous membranes lining the digestive tract” (Wikipedia) – including the mouth. Doctors, nutritionists, oral health specialists, etc. have told me about it. Some people’s mouths and throats are so painful they must get all their nutrition and their meds through an IV. Some people get only a mild case or don’t get it at all. (I’d be happy to be one of those people!)

Blood tests are done daily. For a while there will be no white blood cells – the infection fighters. Somewhere after Day 14 (might be sooner but I don’t have the info here) these cells appear and then their numbers grow exponentially. Meds have been given from Day -6 to try to prevent bacterial, viral, and fungal infections and all sorts of precautions are taken, but complicating infections are not uncommon. Here’s more information than you may want to know, but it is prayer-worthy: because I have an indwelling urinary catheter, I will be at greater risk for infection. I’ll be drinking like a fish and downing the cranberry capsules recommended by my urologist, but with absolutely no infection fighting cells in my body, it might take a miracle.

Anyway, I’ll be at the hospital until my counts reach a critical number AND I am infection free. In this room with a view of the street, the UW, and the sun setting sky.

A Room with a View!

Today we checked in on 8 North East – to a room with an incredible view – but laptop battery is dying, so I’ll have to write tomorrow. Please don’t call until I give details. Thanks!

Save the Dates!

Darren took me to a couple appointments on Monday & Tuesday and at the last one I found out that I will enter UW Hospital on Wednesday, February 11. And my Transplant date is the 17th. (I will be in the hospital a minimum of three weeks, but very likely longer.)

With a week “free,” I’ve been kind of taking it easy – feeling a few days of “normalcy.” I have been thinking about you all and how I need to update but keep finding other things to do. At first the 11th felt like a long way off, but I guess a bed was hard to come by and my doctor jumped on a cancellation and now I’m glad I have a week before the whole thing begins. It gives me time to feel like myself again: finalize things at home; and get Robin off to New Zealand.