Changes

I’m determined to actually finish and post this. I had a long post composed in Word back in early June, but never got it quite done or on.

Long story short, I’m not where I hoped to be at this point.

The good news:

• I’ve not had any complications or infections from the transplant. I often forget I went through that whole ordeal, until I look in the mirror – my hair is very short. Isn’t it supposed to grow ½” each month? Mine is barely an inch long in places.
• At the 3-month mark, I had my Hickman line removed; stopped one med; and got to relax the precautions on what I ate.
• Now I’m nearly to 6-months, and that means stopping another med as well as way fewer blood draws!

The negative news:
I am not any stronger and in fact my legs are weaker and I have way more problems with stiffness and spasms in them. I’ve increased some meds, but the spasms still seem to be getting worse. I’ll see both my neurologist and my rehab doc in the next few weeks so I’ll see what can be done.

Though that seems to be a worsening symptom of my disease (which would imply the transplant failed), other things did improve: my voice/speaking was almost immediately clearer and stronger, and I’ve had less trouble with bladder & bowel issues. (I know that’s probably in the category of too much information, but I have to recognize the good things!)

The leg problems mean I am still dependent on Rick for getting in and out of bed and putting on undies, pants, and socks. Fortunately, he can still work from home in he mornings until he gets me settled. Another downside of this is that I can’t drive because I can’t do the transfer into the driver’s seat. To get the OK to drive from my chair, I have to get an evaluation from a therapist at UW Rehab. I’d rather be able to do the transfer and keep the current Chrysler seat in the van, but I dunno.

Re: Physical Therapy. When I wrote back in early June, I said I’d “graduated” from Physical Therapy at home and was doing therapy at Evergreen MS Center (near home) 2 days per week. My home PT felt a facility would have better equipment and we’d met all the goals she had set. When I started, she had to help me get on and off my standing frame and I thought she was being ridiculous when she told me she thought I could get to where I was doing it myself, but eventually I could. She (and I) also saw improved strength in my arms, trunk and hips.

I really liked home therapy because I knew I made good progress and my therapist was a great motivator and coach. It may have also helped to have “home” be “the gym,” because that was the place to keep up with the exercises. The problem as I made progress in becoming more independent, i.e., doing the transfers myself, became one of debilitating pain in the muscles that run from the neck to the shoulders.

To explain: To transfer from one seat to another, I must lift my legs with my arms. I could do this easily if I were only lifting the weight of my leg, but I’m also battling the force of the tone (stiffness) that wants to keep the leg down and the knee bent: so much so that it feels like a strong magnet is holding my feet. I’m told this is because of tight quadriceps – the muscles on the top of the thigh. Anyway, pulling up my legs strained the muscles that run from my neck to my shoulders (trapezius) and I ended up in almost constant pain. (Sometimes the stiffness was so bad that I could get my leg to do anything.)

After several weeks of no progress, I stopped going to out patient therapy at Evergreen. Pain kept me from doing the exercises at home. I got some good therapeutic shoulder massages there, but the pain only went away when I stopped trying to lift my legs. But now the tone that keeps the knee bent is getting worse – I know it needs more stretching. I could go on and on, but this is a problem I’m not sure how to solve, so I’ll consult with my docs.

So this is where I am today. I don’t foresee posting very often on this blog. If you want to be more in touch, I’m doing Facebook these days. Or just send an email - or hey - give me a call. I'm almost always at home.

She’s Got Legs…

…which don’t work as well as they used to and that’s a big frustration – more on that below.

…that are totally hairless, like my head! (And while I wait eagerly for signs of growth on my still bald pate, which woman among you wouldn’t wish her legs would stay smooth forever?)

Back to the update:

I am doing well overall and staying healthy. A Physical Therapist has been coming for home visits for several weeks. Working with her and doing the trunk and arm exercises on my own, those muscles are getting stronger but at a slower pace than I would like. My hands, arms and trunk are weaker than they should be, but feel close to where they were before the transplant.

My legs, though, are another story: lack of strength and an increase in stiffness are problematic. I didn’t realize how much I used the bit of strength still in my legs for the transfers I did. They are weaker now – probably at least partly due to non-use/atrophy – and more stiff, and the result is that I can’t get in or out of bed or get pants up or down by myself. That means I am dependent on Rick for my morning and evening routine. The problem is that my legs will only get stronger if the muscles get work and I can’t do the work by myself and there isn’t time with the therapist because she’s working on my trunk muscles/sitting balance as well as transfers with a transfer board. The best therapy I can think of is two-hour sessions at Pushing Boundaries (formerly NextSteps) in Redmond, where I’ve gone before, but getting there regularly would be another hurdle. (I stopped going when I stopped being able to drive myself. Darren is my driver these days, which works out well for both of us, but I don’t know how long I can count on him before he gets regular employment.)

Rick and I are in a daily routine where he works from home in the morning so he can get me out of bed and into some pants. He usually leaves by nine and still gets home in time to fix dinner for us. On sunny days he’s been getting in some good bike riding before dinner. And then I can’t get ready for and into bed without him. As you can see he is doing a lot for me.

And I don’t feel like I’m doing much for him - or anyone else, for that matter. So many people have reached out to me while my body went through the transplant ordeal and your encouragement has meant so much. Now I need to adjust to more of the responsibility being on me (to exercise more in order to gain independence). But I feel like I am not doing a very good job with that responsibility, and I end up feeling more stuck than I really am. I kind of feel cut off from life (my routine has me home 24/7 except for appointments) but I haven’t even called the people who have offered to come over. And then I feel badly about that, too.( Perhaps this cycle sounds familiar to some of you…)

So here I am, only 62 days out, already feeling frustrated, impatient and ready for more strength. Though it’s barely been two months. My little knots are not insurmountable – we just need to apply problem solving and time. And describing my situation/venting is probably helpful. And everything is not totally negative: I need reminders of my progress so far; I have HOPE of more progress (I can lose sight of how big hope is); and we've had sunny days(!).

But I still remember when I would just handle my problems myself. Ah, independence.

How Sweet It Is…

…To Be Loved By Rick
I don’t think I can say this often or strongly enough. Rick has helped me through this whole process and I can’t imagine making it without him.

…To Be Home
I’m sorry I haven’t updated sooner, but get me near my computer and photo editing software and I am soon lost in that world.

But home is a much better place to be! Rick has been here a lot and continues to need to do quite a bit for me. Wednesday was my strongest day yet and I felt 80 to 90% back to normal, but I’ve had less strength and stamina since – perhaps due to tapering off prednisone. I’m eating and drinking as I’m supposed to be but fatigue is a huge issue and I need to incorporate exercise into my routine.

…To Have Shannon Here
She flew in from Boston on Wednesday night (18th) and it has been wonderful! Only two more days.

…To Be Released from the SCCA
More of events happening quickly. After being released on Saturday, I had clinic (SCCA) visits on Sunday, Monday, and Thursday. At that last visit I found out I would be “released” from SCCA care on Monday, the 23rd, and on Wednesday, the 24th, will see my chosen Oncologist (Dr. Markowitz, at Steven’s Hospital), weekly for at least a month, then less often. These appointments were all made for me and came as a surprise, but a good surprise.

…To Have Support from So Many
I can’t say thank you often or strongly enough. Cards, emails, visits – though I may not have responded to you individually, they have all meant so much. I look forward to seeing some of you in person soon. (For those who are local, I’ll be sending an email that goes over Immunosuppression Protocol.)

Thanks again. Each of you is a gift to me.

Celebrate!!!!

It's official - I go home tomorrow! We've been told discharge will happen in the morning and we've been forewarned that morning means afternoon - but tomorrow!!!

Favorite Quote

Thanks for listening, all of you.

(This is not meant as a final post, by any means.)

Home At Last?

I'm pushing and it's possible for me to GO HOME Saturday or Sunday!!! They have to be sure home is ready for my needs.

My body is healing so that I feel stronger every day, and what a benefit it would be to sleep ALL NIGHT in my own bed. And I can restart home PT.

Again, I know many of you will pray. This would be a wonderful gift!!!!

They want me to go to rehab...

...but my insurance says "no."

Unbelievable! They actually denied the first request - don't they see that it's the first step toward going home? Docs are working on it: they know I'm eager and they are, too.

This is a concrete prayer request, for those of you in that category.

Thanks!

Tired of Waiting

My doc a while ago said this is a time for patience, but it's crappy being on someone else's schedule. Take this morning, for instance.

Woke at 7, buzzed the call button; an aide popped in 5 minutes later to say the nurses are busy - can I wait a few minutes? I fell asleep til 7:30; buzzed again at 8; someone different popped in to ask what I needed; said she'd gown up and be right back. I buzzed again at 8:30. At 8:40 my day nurse came in and got the day underway, as if nothing.

Thanks for letting me vent! Probably this means I'm feeling better - which I do.

Green Onions

(The song title has nothing to do with this entry, but we heard it on Get Shorty. Great piece!)

Progress! Still clear of fever and rashes (!) and FINALLY off IV nutrition (!!!!): i.e., one "D" down and two to go. Still haven't gotten the sleep thing down: too much drugs (Ambien or Benadryl) and I feel "hung over" the next day; fewer drugs and I don't sleep as well and feel tired the next day.

Deb (my beautiful sister!) took some pictures: I'll bravely share one. On facebook, I captioned it "Matching hairdos."

All for now, Di

Stronger every day? Part 2

I forgot to say that the doc is convinced I don't have pneumonia, just a bit of a collapsed lung from not breathing deeply enough. Should be better now that I'm in my chair more.

Stronger every day?

Thank-you for all your thoughts, wishes, and even prayers. (I am a person of little faith these days.)

I woke this morning feeling as blue as I have ever felt - I so want a stronger body and am so tired of the dependence, the diarrhea, and the dripping of the IV. Everyone is so respectful, kind, encouraging, etc. Now that I have gone two days in a row without fever or rash, the Attending Nurse Practitioner and Doc are even more positive and upbeat. Today I met my new Attending Doc: he likes to go by his first name, Hootie.

I emailed Rick as soon as someone could help me sit up and then he appeared here before 11 am!! Life is better when he is here. Still looks like I will transfer to Inpatient Rehab will early next week and hopefully be home a week or so after that. Hopefully.

(I have felt stronger today; spent more time in my chair again. I'm getting an appetite back and am FINALLY on my last bag of IV nutrition. My marching orders are to eat as if I'm working out, because my metabolism will be ramped up for a while as my body puts so much energy into healing itself.)

Thanks for listening again.

A Longer and Windier Road

Friday and Saturday, I felt so good. Then Sunday & Monday I fought a fever. Monday night I felt so much better, I thought I had turned the corner. Then what happened?

Oh yeah, the rash. I've had a non-itchy but visually notable rash on my back. This plus the unexplained fevers meant i got a visit from the Infectious Diseases docs. They determined I ought to be switched to a different antibio. So at about 10 on Tuesday night, this new drug is being infused and within a couple minutes, I am ITCHING! So I call the nurse and she administers Benadryl and slows the infusion speed but I don' t think it had helped much before I started dealing with another fever. All in all one of the worst nights of my life. A second dose of Benadryl got the itching under control. But then I was so hot and achy it was hard to sleep. Then yesterday I felt hung over from how much Ambien I'd taken to try to sleep.

I have had 2 or 3 subsequent doses without incident: I get Benadryl first and they use the slower infusion rate. Last night was a much more restful night. Also yesterday, a CT scan of my lungs showed I have some Pneumonia. So now I have another pill - an oral antibiotic.

The Long and Winding Road

Rick again-

Diane's been making good progress but there are ups and downs on this path.  As of yesterday her immune system was recovering very well, white blood cells about twice normal level due to some growth-exciter drugs they gave her this week.  Today however she was running a fever, which wipes her out, and had an allergic reaction to an antibiotic.  So this turns out to be somewhat a trial-and-error process for the docs.  They pay close attention but it isn't a walk in the park.

Hopefully next week is a rehab stint that helps her get some strength, energy & range of motion back.  She's not eating yet, but that takes some time.  The doc says that the way her mouth healed up quickly is a good sign that her innards are recovering quickly as well.  

As I mentioned earlier, Sandy brought in some photos, so I took a few pics to show you how they fit into the room.  Lots of friends and family, nice and big, so they're visible from her bed.   

Thanks again for all the cards, letters, e-notes, etc.  It helps her to stay in touch.

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.

Etc.

I posted a comment in response to a comment in my previous post. It has some info I'd like you all to have, so may I please direct you there?

Yesterday

Actually, not yesterday, but the day-before-yesterday. That was Tuesday the 27th, when I did the Collection/Harvest.

First, the GREAT news: my body produced (they collected) enough stem cells in one go that I don’t have to do it again!!! That means two things:

1. No more G-shots (“Growth Factor”)! The injections were no problem, but the effect was to make me really tired (why I didn’t write yesterday) and somewhat achy; give me some headaches and intense but passing lower back pain; and – worst of all – greatly increase the number of white blood cells in my body (with an auto immune disease, they are, essentially, an enemy).

2. No more four-plus hour stays at the SCCA! Wasn’t bad, got to be in a bed the whole time. I scared them once and was the center of attention when my BP dropped to 80 over 53! I felt no different since I was drowsy the whole time…. Anyway, they slowed the process (basically blood going out through one port; being processed in a centrifuge; and what isn’t needed coming back in through the other port.) I drank more, ate more, and it quickly went back to where the doc was comfortable. But of course it took longer, but fortunately when they finally called just before 8 pm, the news actually made me HAPPY – really happy.

(Maybe eventually I’ll be so back to normal that I won’t use so many parentheses or italic, bold, etc….)

Now I go in for a couple days, mostly just for blood work. But I’m finished! - until I go into UW hospital “next week” – probably the 4th. I’ll for sure be there 21 days – perhaps longer - beginning with six days of chemo to obliterate my bad immune system. On Day 7, my harvested stem cells will be transplanted.

That becomes Day 0. I’ve been encouraged to celebrate this as my second birthday. Then the days are counted until my new, baby immune system engrafts: 10-28 days.

Not sure what my restrictions will be on visitors. Will let you know. But the other GREAT thing about Tues. was that the mail included two cards! Thank-you to each one of you who have posted comments and/or become a Follower of my blog; sent me an email; or written a card – I may not respond but please know that it means a lot to me. In Shannon’s words, it is something that makes me happy.

She's Not There...

I'm back home! We tried the hospital for a couple days, but I didn't seem to need it & home is much more accomodating in so man ways. We are playing by ear the harvesting, scheduled for Tuesday. Inpatient is always an option.

Was good to visit the floor whivh will be my home for at least 3 weeks. Now I know better how to prepare and what to bring.

I’ll Be at UW Hospital Tomorrow

At our meeting Wednesday, we decided to go with my doc’s recommendation to do the growth factor, etc. drugs as well as the collection—as an inpatient, meaning that tomorrow at 9 am, I’ll be admitted to UW hospital for about a week. (Then I’ll be home for about a week and then I’ll start my 3-4 week stay for the actual transplant.)

This part of the process can leave people pretty tired and the doc saw that I don’t have many reserves so she felt it would be better all around to play it safe and be an inpatient. She also told us the GREAT news that immediately after the long hospital stay it would be just fine with her that we came back to our own house! (I.e., we don’t need to stay in Seattle!)

Got the line placed today. Not too bad, but I’m ready to sleep, though I’ve kind of been doing that all day.

And So It Begins - For Real

I’ve just watched a broadcast of Dr. Martin Luther King’s “I Have a Dream” speech. Made me teary a couple times to think what he represents and how far our nation has finally come. (If you’ll forgive the unsolicited political blah-blah, I’m so glad Obama, not McCain, is our new prez!)

It also reminded me that though this huge process consumes most of my thoughts and my time, I am just one person. Though I hope to still have an impact – however small – on the world: if this transplant is successful, it will help pave the way for others with my disease; and, I really want to get back out in the world as a volunteer – that has been part of my identity forever, I guess. So, onward…

Friday I got the call that my Central Line placement appointment was moved up from the 27th to this Thursday, the 22nd. FYI, this line will be “my friend” for the next few months and will be used for everything from simple blood tests to giving me nutrition if I’m not taking in enough. Its first use will be infusions of stem cell growth-stimulating drugs followed by collection of those cells, so with its placement comes a firmer timeline that puts me on target to enter University Hospital on about Monday, February 2 and begin 6 days of chemo. (On the 7th day my collected stem cells will be infused and we’ll wait for my new immune system to “engraft.” But I’m getting ahead of myself…)

The next ten days or so will be busy with trips to SCCA. Rick will be my main driver/caregiver (except tomorrow Deb takes me to the UW for a swallowing/speech evaluation) since along with the procedures we’ll be receiving info we both need to know.

Also, this is not the only HUGE thing happening in our lives.

• Robin leaves for New Zealand (!) on February 8: she’ll be studying there for a school year as part of the UW exchange program.
  
• AND Darren, having finished his degree in December (BFA in Graphic Design), will be moving up from SoCal to live with us – to help as much as needed and to find work up here. This will happen as soon as he can work out how to get himself and his stuff up here as cheaply as possible.

So there’s a lot on our plate.

I’m in!

Yesterday was my final day of Testing/Evaluation, and everything looks good for me to go ahead!

The next step is Stem Cell Collection and to do that I need to have a Central Line placed in my chest and the first date the docs were given was January 27. They and I are hoping to do it sooner – ASAP, really.

But wait! There’s MORE!

Seems like forever already: 8 trips in 11 days.

Yesterday set the record for the latest time leaving the SCCA (not total hours - that's still Wednesday, 12/31, when Rick and I were there from 8 am until 3:30 pm). After more than 2 hours in the MRI machine (I was so tired that I slept through part of it), and yet another urine test, my sister and I finally left - I think it was close to 7 pm. The good news: NO TRAFFIC. Thank you, Deb, for being there for me!

But I'm scheduled for yet another screening test. So I have appointments Monday and Wednesday, and they’re trying to schedule a couple things at UW.

Adding others...

I meant to say something about this. you are welcome to invite others to view this, but I'd appreciate you doing what Debbie did - just ask me. (Hello. Lori & Bill!) Eventually I may not care, but for now I'll be a gate keeper.

Evaluation Phase

My first appointment was Tuesday, December 30 at the SCCA.

Then – it feels like suddenly, though I have waited so long – I am immersed in a new world: of Stem Cell/Bone Marrow transplants and the SCCA – where “cancer” is an everyday word; blood tests are the norm; bald heads on women are not unusual: the Gift Shop sells hats; filling out a Respiratory Symptom Screening is the first order of ever day and people with any symptoms are politely asked to wait outside; and I am surrounded by cheerful professionals whose primary goal is…ME!

So far I have been taken to the SCCA five times – four times by Rick; Robin drove once & Sandy Hamilton gets a turn the next two days – for the Evaluation phase: a series of medical tests to determine whether my body is up to the challenge of the chemo-therapy. This was how Rick got to spend 3 days of his Christmas vacation. But it was invaluable because he could lift me onto various tables and chairs for exams, x-rays, & measurements AND he also was becoming familiar with our new environment.

We met members of "my team" – nurses, docs, nutritionists, etc. – and verified that my heart, lungs, mouth, & female organs are in good shape. All that’s left, I think are, more blood work & meetings (today); an Echocardiogram (tomorrow); and an MRI (Friday). Or more could be added.

But I’m still, I think, looking at a meeting early next week to go over my results and schedule the next phase – stimulating growth and then harvesting stem cells from my blood.

The First Post & Timeline

Welcome to my blog! Thank-you for sharing this journey with me.

First order of business: an explanation of what a Stem Cell Transplant is and an overview of the timeline. This segment is pretty much “just the facts” because I fell an urgency to get those broadcast.

My insurance finally approved my participation in a study on the effect of a Stem Cell Transplant on debilitating autoimmune diseases that have been unresponsive to other treatment. The purpose of the transplant is to give me a new immune system – using stem cells from my own blood – after using chemotherapy to destroy the old one, which has turned against me. Because this treatment is usually for cancer, my care will be coordinated through Seattle Cancer Care Alliance (SCCA) and the Fred Hutchison Cancer Center at the UW.

In general, treatment involves around a month of preparation, a month in the hospital, and a month living in Seattle. (I’d been told I’ll then be living with a “baby immune system”: I understood more what that meant when I learned that after about a year, my immune system would be mature enough for me to be re-immunized with all the usual vaccinations.)

First, a series of appointments and tests to make sure my body, soul, & circle of caregivers are ready for this procedure. My first appointment at SCCA was December 30. By mid January, if all is OK, I will begin a few days of infusions of something to stimulate stem cell growth; have a “central line” (semi-permanent in/out IV) placed in my chest, where it will remain for a few months. Its first use will be to harvest stem cells from my blood, which will then be frozen for several days.

Around the beginning of February, I will be admitted to UW hospital/Fred Hutch, where I’ll receive several days of chemotherapy – complete with all the typical side effects, including nausea and hair loss – to wipe out my immune system. Next, my stem cells will be re-infused and for the next few weeks I’ll be closely monitored while waiting for my new immune system to graft and grow. My body will of course be at huge risk for infection so I’ll be in the Transplant Ward at Fred Hutch, receiving antibiotics and whatever else I need through the central line. If all goes well, I’ll be released - to live within 15 minutes of the hospital for the first month when the infection risk is still quite high.

So for this month (March-ish), I will need to reside in Seattle, and will require a caregiver with me 24/7 to take my temperature, drive me to the hospital if…, etc. Those dear people must have a flu shot; take a class or two at SCCA; be familiar with driving my van; know the route to UW hospital; and be able to give up part of their lives/routines to take care of me in Seattle. So far I have lined up a few people to share the load with Rick, but it’s been hard for me to ask.