Nov. 30: Not as Good a Day

I guess there will always be up days and down days; today is a down day for Kristina.

About 24 hours ago, the docs were making plans to take her off IV meds and feeding-by-IV, in preparation for her going home early next week. Her blood numbers are still going up (see charts link to left), and in fact Platelets are in the normal range, and Immunity (ANC) is headed out of the Neutropenic range. All this means that she is recovering from the side effects of chemotherapy.

Then the last two days she woke up bleeding from the ear, and she’s been nauseous pretty constantly. She has also been running hot seats and cold chills, though she has no fever. They are going to do a thing this afternoon called an upper GI (for gastrointestinal) endoscopic exam. Basically, that’s putting a camera down her throat to see how things look, and doing a biopsy to check the tissue for clues. At this point, they have no idea why her ear has been bleeding, and in fact she says her ear doesn’t even hurt.

The overriding concern, of course, is Graft Versus Host Disease, which is when the new blood from her transfusion attacks her own blood and organs as foreign invaders. Her doctors say about 30-40% of patients never get this, another 30-40% get it a little bit, and the rest get it chronically, which can have large effects on lifestyle.

SO … what all this means is unclear, and will stay that way at least until results come back from this afternoon. It probably means, too, that she won’t go home early next week. But nothing is certain.

We do know this: Today (Nov. 30) is not going to be a good day for a visit, because she’ll be wiped out. Also, for the next couple days, it will be a good idea to call before visiting, to make sure she’s up for it. Her voice is pretty strong, but there’s no telling how else she will be feeling.

I also have to tell you, and I’m using some of her own words here, that she’s discouraged and sad and frustrated. Things were going well, she had high hopes for going home, and now all of this comes along. This is probably how life is going to be for her for a while, but still: keep sending those positive vibes, give her a call this weekend, maybe go see her.

On a lighter note, readers of Seattle Weekly might get a kick out of seeing her name in print – though in small letters. I grabbed the ad from Tractor Tavern and will post it below. Check out the bottom box!

Nov. 28 -- Numbers Going Up!

Well, there's some pretty good news today: all of Kristina's blood numbers are going up, and there's a chance that she will go home early next week.

She walked a couple laps today and has been vomiting without warning, which wears her out. But her doctors say she's doing well overall, which is something we can all feel good about for now.

Her throat has gotten better, as well; she said on a scale of 1 to 10, with 1 being good, yesterday was a 4 and today 2.5.

This means that talking to her on the phone involves some actual conversation now! Give it a try: 206-598-3906.

Nov. 27 -- Pretty Good Day

Just had a nice chat with Kristina on the phone, which should tell you right away that today is better than the last couple of days. She actually has a voice again! It's definitely faint, and she gets tired and spacey pretty quickly, but she can talk again, which is nice. She said her throat feels much better today and she's only vomited twice all day.

The blood numbers and her doctors both reflect that things might be looking up. Her docs said they think she's at her nadir as far as numbers go, and the new target date for sending her home is about a week from now, Dec. 2nd or 3rd. Let's all say a little prayer for that to happen!

Speaking of those blood numbers, I am happy to report that I have now created charts! I save them as images in an album on Picasa Web, and you can view them right here, or via a link on the left below the donations link.

Please check your calendars again and look for a weekend day in the next few months when you might be willing to do some caregiving at her apartment. There is some training involved, but people are in place to help with that. Leave a comment here or email Kristin at polarbare49@hotmail.com if you have any questions. Thanks!

That's it for now.

Nov. 26 Update

Hi, everyone. Spoke to Kristina today, and she had slept well last night but was headed for a nap. Her voice is still weak, and she was pretty spacey, but she was happy to report that another patient she's been keeping up with, Jessica Abood, is probably being discharged soon. That's our hope, of course!

Her blood numbers today are slightly up, and I also converted those numbers to charts in my Picasa Web account. There's a "Kristina's Blood Charts" link to the left, just below the Donate to Kristina's Medical Fund" link (hint, hint!).

Basically, we're still waiting for some news about the success of the transplant. Let's all hope there's good news soon!

Sunday, Nov. 25

I am sitting by Kristina's bed again today, and she's dozing off a bit. I found her today surrounded by paperwork and bills, and with very little voice. She still has some pain in her throat, and her skin is largely covered with red bumps and a few large bruises. She has very little hair and has lost about 20+ pounds -- all this just to paint a picture. The sun is streaming through her window, which has a view of Montlake Cut. She's drinking some tea and occasionally having to spit into a bedpan.

There's no real medical news today. Blood numbers are about the same. Later today she will get her last dose of methotrexate, which is a chemo treatment that's a precentative against Graft Versus Host Disease. It's a pretty nasty drug and won't make her feel any better in the short term. What we're really waiting for right now is news on engraftment; we're on Day 11 since the transfusion now, so approaching the middle of the first 30 days.

Having done it twice now, I can tell you that visiting Kristina is quite easy, and of course she appreciates it very much. It's not scary, difficult or unpleasant. For a while today I just sat and read the paper while she wrote some checks. I know if I was in the hospital, I would want nothing more than friends to be around -- not bringing anything in particular, or doing anything, just being here. It's something to think about.

Straight from the Hospital

Hello, everyone!

I am typing this from a chair next to Kristina's bed. She's watching Stephen King's The Stand and showing me pictures from a sailing and camping trip.



She's not feeling great today, mostly because her throat hurts and she's quite hoarse. She gargles often and has a morphine drip with a button for the pain. Her team of doctors -- only three today but sometimes six or seven -- just came in for a checkup, and all seems well except for some dry, itchy skin and possibly a small fever. They told her she's doing well and went on their way.



Her white blood cell count is up slightly today, to 0.15 after being 0.13 yesterday and 0 the day before. ANC (immunity) is still zero, and HCT is still 30. Platelets, after a transfusion drove them as high as 85 on the 20th, are back down to 21 now. She also reminded me that I am supposed to put all these in chart form, so I'll get back on that.



Across the way, Husky Stadium is filling up for the annual Apple Cup football game (Washington vs. Washington State), so she'll be able to see a throng of people out her doorway and across the hall.



She's not walking as many laps as before, because she gets a little motion sickness -- which we both laughed at, as we are both veterans of Alaskan fishing, and she's been through 30-foot seas and not gotten seasick, but now she feels it walking around a flat floor. So she's working on yoga in her bed to at least stay flexible and comfortable.



I asked her if she wanted to say anything in particular, and she said, "Thank you everybody for all that is being done and will be done and all the contributions and people offering to help with my apartment and that I have a truly amazing group of friends and acquaintences who are bending over backward to help me out, and there are not enough words to show my gratitude."



We still need caregiving volunteers for weekend shifts, so please contact Kristin (polarbare49@hotmail.com) to ask about that; soon we will have the calendar posted online so you can see where we need people.

Nov. 21: Not Feeling Well Today

There was a noticeable change in Kristina’s voice today as soon as she answered the phone. She woke up this morning vomiting and has already (as of noon) had two shots of morphine for intense pain in her throat. Both speaking and swallowing cause her pain, and the docs are considering putting her on a morphine drip, and possibly tube-feeding her. Her half-inch of hair is falling out, as well.

All in all, kind of a grim reminder that our friend is really sick. Her doctors have told her they’re impressed she made it to Day 7 post-transplant before showing some of these symptoms. She hopes this only lasts a week or two and says it’s more uncomfortable than she thought it would be.

The last two day’s blood counts give you some impression of the situation:

WBC 0.13 – 0.00 (she literally has no white blood cells at this point, and is getting blood transfusions; normal range for this number is 4.3-10)
HCT – 28 – 26 (not changing much, normal is 36 to 45)
ANC 0 – 0 (she has no immunity right now at all)
PLT 85 – 56 (this shows the results of Monday’s platelet transfusion wearing off; normal is 150-400)

Please keep sending healing vibes her way!