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!

Nov. 19 Update

Today is Day 5 since the transfusion, and there’s an interesting number to report: 0.00. That is Kristina’s ANC count today, the measure of her immune system’s strength. And yes, that means that she has no immune system. A simple infection could literally kill her at this point, which is why all her visitors have to wear gowns and there are severe restrictions on what she can eat, and what can come into the room.

So, once again, call before visiting!

She actually feels okay today. She got a platelet transfusion today, because that number was down to 10 (normal is 150-400). The other numbers will pretty much drop to zero, which is expected, and then it’s a matter of waiting for engrafment, which is the process of the donated stem cells getting into her bone marrow and making healthy blood cells. This typically takes 10 to 14 days, though in her case it might take longer, because her donated stem cell count was lower than you hope for.

One other piece of good news: Jessica Abood, a transplant patient Kristina knows in the same hospital, is doing well, is off her feeding tube, and should be released for a second time.

Three things to take with you today:

• There is a final version of the flyer for the December 19 fundraiser concert. I’ll post it separately.
• Please consider volunteering as a weekend caregiver at Kristina’s apartment; email Kristin for more information.
• Please considering pitching in to Kristina’s transplant fund, which you can do online with your credit card.

Nov. 18 Update

I spoke with Kristina Sunday evening. She was enjoying a nice hand-made pizza from her friend Mike; apparently there are a lot of things that have to go into stuff like this, like thoroughly washing the veggies, having only one person touch it, and so on. It was a much-appreciated pizza!

Here are yesterday and today’s blood counts, which continue to show the expected decline:

WBC: 0.38 – 0.24
HCT 28 – 28
ANC 0.12 – 0.02
PLT 30 – 18

Kristina attributes this to her second hit of methotrexate, a chemo drug that is a preventative against Graph Versus Host Disease. She will get this drug four times over the next couple of weeks.

She also this weekend started to see her first low-grade fever (99.7 Sunday), which might be a harbinger of bad stuff to come. She’s now lost 21.5 pounds but basically still feels pretty good.

Her apartment, meanwhile, is getting a transformation. A donated dishwasher was installed so dishes can be cleaned in the right way, and some friends also converted part of the kitchen to a sleeping area for the professional caregiver who will be there five nights a week.

That’s it for now – please stay in touch!

Nov. 16 Update

Hi, everybody.

The news today is that the expected drop in Kristina’s blood counts (the result of earlier chemotherapy) has started to arrive. This doesn’t mean that she feels miserable, but it does mean that she is headed towards a condition called neutropenia, which essentially means she has little or no resistance to outside infections.

Again, this is a reminder that if you come to visit (see room info at top left), you cannot have recently had shots or been sick, and you can’t bring flowers. Call her if you have any questions.

For a little reference, next to each count I have included the normal range and the last three days’ counts. The last one, in bold, is today’s.

WBC (4.3 to 10) – 2.95 – 3.01 – 0.95
HCT (36 to 45) – 30 – 30 – 29
ANC (0.500 is neutropenic) – 2.27 – 2.65 – 0.610
PLT (150 to 400) – 65 – 98 – 56

Kristina walked some laps today but says her appetite is about half of normal. She also really wanted me to say that she is very moved by the love and support she’s getting. I think she can feel all the healing vibes aimed her way.

Also, please check out the previous post for ways you can pitch in to help with some volunteer effort. Another way to help, of course, is follow this link to make a donation to her medical-expenses fund. Just scroll to the bottom, click "Contribute Now," and follow the instructions.

How You Can Help

(Today's message is from Ali Saccone)

Hello all!

Many of you have asked as to how you can help Kristina as she deals with her health issues. Well, now is the time!!

We are organizing the following event to raise funds to pay for her care giving and living expenses so Kristina can have a stress free recovery.

Kristina's 'Bone Marrow Bash'
Wednesday December 19th, 2007
The Tractor Tavern
Ballard, Seattle

Spread the word!!

How can you help:

We have formed teams to deal with all the details of the event, and we need good friends to lend a hand. If you would PLEASE like to join any of these teams to help with the success of the event in honor of Kristina, please contact the team leader at the address provided ASAP!

Flyers and Distribution: Craig (craigless64@yahoo.com)

Media Team: Position Available (Contact Ali at alisaccone@hotmail.com for more detailed information.)

Raffle: Mike (lioneye724@yahoo.com)

Production: Tim (timstail@yahoo.com/206-799-8977)

Donations and Procurement: Position Available (Contact Ali at alisaccone@hotmail.com)

This is not necessarily related to the event, however we need someone to do some hardcore fundraising! We are looking for someone who has some experience with
fundraising, who will approach corporations and/or philanthropically minded individual, for cash donations on behalf of Kristina. If you, or someone you know, can help us with this task, please let us know!

A huge THANK YOU to all of you in advance!! Looking forward to hearing from you soon!

In the interest of web-site space this announcement has been reduced.

Day 1, and All's Well

Today is Kristina's first day post-transfusion, and she sounds quite good. Yesterday she was a little melancholy and sad, but today she sounds upbeat.

She says the transfusion was "a non-event, just another transfusion" that took about an hour and a half. Somebody even took pictures, so maybe one day we'll have those online. One funny thing is that before the transfusion, her blood type was B-positive, and today it's A-positive.

Another thing that happened is that, as a result of the transfusion, her platelet count temporarily spiked. Here are today's blood numbers:

WBC 3.01
HCT 30
ANC 2.65
PLT 98

She says it's "all wait and see now," and there's no telling when we'll know anything definitive. What we do know is that she's lost 20 pounds but her hair is growing back -- and it's darker, which she doesn't seem too thrilled about.

Here's a way people can help: bring her a movie to watch. She likes international and travel films in particular.

I'll post more when I hear it.

No Transplant Just Yet

Kristina’s transplant has been put off a day – sort of. It will happen around 4 a.m. on Wednesday. Apparently the plane with the stem cells doesn’t get to Seattle until 11:20 tonight.

She’s a little sleepy today and “kind of out of it,” but otherwise seems to feel pretty good.

Here’s something to think about: After Kristina gets out of the hospital, she will need full-time caregiving at home. She has hired a pro for five days a week and has saved weekends for friends to volunteer.

A good friend named Kristin is running the caregiving sign-up operation, and soon there will be an online calendar for people to sign up. Meanwhile, if you think you could put in a 24-hour shift at Kristina’s place some weekend, or if you just want some more info about it, please get in touch with Kristin at polarbare49@hotmail.com.

Here are today’s numbers, which are headed down:

WBC: 2.95 – yesterday was 3.65 – normal is 4.3 to 10
HCT: 30 – yesterday was 29 – normal is 36 to 45
ANC: 2.27 – yesterday was 3.32 – normal is 1.8 to 7
PLT: 59 – yesterday was 65 – normal is 150 to 400

By the way, like the new layout? Kristina chose it herself!

More Detailed Transplant Info

I poked around Marrow.org and found two pages with more details:

Receiving Your New Cells -- Bone Marrow Transplant
and
Waiting for Engraftment: Days 0-30.

Tomorrow is "Day Zero"

Hi, folks.

First off, some details for today. Kristina now has an answering machine, so the vast power of the internet has demonstrated itself again. Also, as a reminder, she is in room #8214 and would love visitors. Call ahead to be sure it’s a good time; the phone number there is 206-598-3906.

Fundraiser Shaping Up

Plans are coming together nicely for a fundraiser concert in Seattle on Dec. 19. It will be at the Tractor Tavern in Ballard, with bands and a raffle and lots of fun and friends. Doors open at 8 p.m., and we’ll have more details and a flyer soon. Oh, and it’s being called Kristina’s Bone Marrow Bash.

And speaking of that whole fundraising thing, please take a moment right now and make a donation to her Transplant Fund. Lots of bills to pay.

Transplant Time

Well, Kristina is done with chemotherapy, and tomorrow is “Day Zero.” That means that tomorrow Kristina gets her bone marrow transplant. She told me today it’s actually something of a “non-event.” Basically, they put some material into her IV, and over the course of an hour it enters her body via a catheter in her chest. She might experience a little fatigue and some aches, but that’s it.

It’s more rightly called a Stem Cell Transfusion, since they no longer actually transplant bone marrow. The stem cells from her anonymous donor will be flown into Seattle tomorrow, checked out in a couple of labs, and then given to her, probably tomorrow evening.

What Then?

Then we wait for something called engrafment; this is when the stem cells from the donor make their way into Kristina’s bone marrow and start making blood cells. Typically, this takes 10 to 14 days, during which time Kristina will probably experience something called mucousitis, which is inflammation of the mucous membranes, both in the mouth and intestine.

The bigger potential problem during this time is Graft-Versus-Host-Disease (GVHD). I looked this up on the Web, and I found this page at Marrow.org, which is loaded with information. Here’s their quick definition: “In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host). GVHD can affect many different parts of the body. The skin, eyes, stomach and intestines are affected most often. GVHD can range from mild to life-threatening.”

There are also possible kidney, liver, and eyesight complications – clearly, this is why she’s in the hospital and needs so much caregiving to recover when she gets out.

Latest Numbers

Her blood numbers are going down (as they’re supposed to), but not much. She tells me it’s a delayed reaction to the chemo. Last time around she didn’t get really sick for a couple of weeks after the chemo, but this time she expects it within the week.

Here are the numbers for Sunday and Monday:

Sunday: WBC 3.16, HCT 31, ANC 2.52, PLT 67

Monday: WBC 3.65, HCT 29, ANC 3.23, PLT 65

She’s still doing laps around the ward and would still love some visitors – just call ahead.

Kristina is in a New Room

Just spoke with our favorite patient, who sounds pretty good for a person on chemo. She says she feels a little “shaky,” but that’s to be expected – and just this afternoon she started on the more serious chemo drug. So things might get worse soon, and in fact our talk today was cut short because she had to go vomit.

She is in a new room, #8214. The phone number there is 206-598-3906. She now has a view of Mount Rainier, which is an improvement.

She says the docs tell her everything is going according to plan, and the transfusion is still expected to take place on Tuesday. After that, she’ll just be in the hospital (no more chemo) and it will be all about those blood levels. “Hurry up and wait,” is how she put it.

Speaking of blood levels, here are the last two day’s numbers, with the normal range in parentheses:

WBC: 5.87 – 4.84 (4.3 - 10)
HCT: 36 – 34 (36 - 45)
ANC: 4.13 – 3.31 (1.8 - 7)
PLT: 86 – 75 (150 - 400)

An explanation of these numbers is in the previous post.

Nov. 8 Update

I just spoke to Kristina, and her mom was visiting, which was nice. She (Kristina, that is) had just finished walking her 11 laps around the ward and felt pretty good. Her only complaints at this point are that she's a little jittery, her tastebuds are going, and her stomach is iffy, though she's not vomiting or having diarrhea. She told me she's not in pain, but "something's up, and my body knows it." Hopefully these symptoms stop when she stops taking the dilantin tomorrow.

Two notes on visiting: word is it's better to park across the street, and after you get to the 8th floor, turn left past the nurse's station.

Here are today's blood counts, again with the normal ranges and also with a few notes to explain what each one is:

WBC: 4.6 (4.3 - 10) These are white blood cells.
HCT: 36 (36 - 45). Hematocrit is cells that carry oxygen; the fact that this number went up since yesterday was a surprise to her.
ANC: 3.04 (1.8 - 7). Stands for Absolute Nutrofill Count, which is how susceptible she is to outside matter. When this gets to zero (and it will), she will have no immune system.
PLT: 77 (150-400) Platelets are responsible for clotting. Below 25 and you can't get surgery because you will, as she put it, "bleed out." Below 10 (where Kristina is headed) and you get transfusions.

One more note: she told me that yesterday she took 58 busufan pills (that's the chemo) plus 14 others, mostly prophylactic. She says she takes pills "all day long."

Nov. 7 Update

First of all, I highly, highly encourage/request/plead with everyone, especially in the Seattle area, to go visit Kristina (see the info in the previous post). I spoke to her again Wednesday afternoon, and she sounds very upbeat – even a little twitchy, in fact, but she says that’s the dilantin, which makes her feel a little goofy in terms of nervous energy and occasional vertigo.

My point is, she can have visitors, she would love visitors, and for right now she feels basically good. Her meds will change this weekend to something more toxic, and as she told me, she “will be miserable any day now.”

Just call before you come, to make sure she’s in the room. If she doesn’t answer, call back in a few minutes, as she may be either walking laps around the hallway or in the shower or gone for a procedure of some sort.

By the way, if anybody reading this has a spare phone-message machine, she’d love to have that.

So, the medical news is all pretty good at this point. Her weekly chest x-ray was clear, and the following blood numbers, she tells me, are what they should be at this point. She says these will gradually go down to almost zero – the reason for chemotherapy in anticipation of the transplant on Nov. 13. The reason there’s a one-year recovery from this is that her body has to rebuild these numbers to where they should be.

As always, the normal range here is in parentheses:

White blood cells: 5.41 (4.3 - 10)
HCT: 33 (36 - 45)
ANC: 3.92 (1.8 - 7)
Platelets: 81 (150 - 400)

How to go see Kristina-- and how she's doing

I spoke to Kristina this afternoon, and she sounds quite good. She said she’s a little loopy from the meds, but the negative effects of the chemo have yet to kick in. She doesn’t think it will be long before that happens.

So, as for visiting her, she can have visitors at any time – even for a sleepover.

Here is her info:

Room #8258
University of Washington Medical Center
1959 NE Pacific St.
Seattle, WA 98195
Room phone: 206-598-3926

Parking is best across the street in the underground "Triangle" lot.

Take the northeast elevator to 8th floor, turn left past the nurse's station.

There are some restrictions:

-> no flowers
-> no fresh fruit/veggies
-> no head colds/tummy flu exposure
-> no recently vaccinated children
-> visitors must ware a gown & gloves before they enter the room

And now, for the other question: How is she doing?

Here are blood levels from the day she was admitted, Nov. 5:

(Note: I don’t really know what any of these mean, but she sent the "normal" ranges.)

11-4 CBC Levels:
White Blood Cells: 4.75 (normal is 4.3 - 10)
Hematocrit: 33 (normal is 36 - 45)
Platelets: 74 (normal is 150 - 400)
ANC: 2.88 (normal is 1.8 - 7)

11-4 Liver Levels:
AST (GOT): 29 (normal is 15 - 40)
ALT (GPT): 40 (normal is 6 - 40)

And now, here are the numbers from November 5 (note that they are all up):

WBC 5.85
HCT 34
PLT 84
ANC 3.06

Note: If there's anything else you want to know in these posts, let me know in the comments or at paul@paulgerald.com.

More tomorrow.

Paul

Nov. 5: Kristina is Checking In Today

Everyone,

I spoke to Kristina last night, and she is on track to be admitted to the hospital this afternoon, Nov. 5, around 4 p.m. She sounds good and determined, but under no illusions about what lies ahead.

At this moment, all I know is that she will be on the 8th floor of the University of Washington Medical Center in Seattle. She will be able to receive visitors, and hopes to eventually be online. For details like room number, current condition and phone/email status, stay tuned here.

Also, we will be posting charts of her various blood counts, once those start coming in, and once I clear the technological hurdles between hither and yon.

Here, generally, is what lies ahead for the next week or so: she'll start getting doses of chemo on Tuesday, a medication called busulfan. She takes this orally, and she suspects it will soon make her quite sick. One of the things it can do is give people seizures, so on Monday afternoon she will take three rounds of dilantin, which is an anti-seizure medication. Apparently, after three rounds of this, you get some pretty bad vertigo.

The scheduled date for the transplant is November 13. There is a chance she will be out of the hospital by the end of the month -- assuming everything goes just right -- but even then, she will be confined to home for a period of months, she will have to avoid contact with the sun for a year or more, she can't swim, and in general her life will be dramatically altered.

There will also be many, many bills to pay, so please consider taking a moment to make a donation for her medical expenses via the link to the right.

One final note for now: We told you about Trish Dicomo in the last post. She and her husband have been very supportive and helpful (they even posted a response to the last post) as Trish battled the same condition with the same treatment program as Kristina. Trish Dicomo passed away on Saturday. Kristina asks that we all send prayers and energy to the Dicomo family.