Happy Birthday, Margie!

Spoke with Cathy and Margie today:
Cathy's 1st of two blood draws got off to a bit of a rocky start. Her calcium levels dropped, so needed more calcium,
then anxiety which constricts veins, can't have that, so adavan (sp) then something else that i can't remember for some other symptom. So, by 3 pm, she was 1 and 1/2 hours into a 3 hour blood draw which pulls blood from one arm
spins, and sorts it. Then over to research to count and pull out the stem cells for Margie. Blood left overs back into Cathy.

When I spoke to Cathy tonight about 6pm, she sounds wiped out (no kidding!) and then scheduled for tomorrow for the same thing at about 11 am. Richard is there taking care of her in Seattle: get that calcium down her, make sure she's got the nutrients to stay strong tomorrow.

Today of course, Margie's birthday: From what I got on cell phone conversations- cake, balloons, lots of cards in the mail and lots of time next to Cathy at the Hutch, watching Margies "cure" coming out of Cathy.

What a birthday and then tomorrow of course, anticipated for months: how could something called a "mini" be so big???
There's nothing mini about it to me.
Tomorrow Ist thing: blood draws as usual for Margie then onto the full body radiation, then in the afternoon the transplant commences at the University hospital. She'll be there for the night and then the 100 day count begins.

So much can or CAN'T happen in that 100 days. We all hope and pray for what won't happen.

Love, Kathleen

The shots are working

Hey Guys,

Last night Richard came over and we had dinner, and he took me to the ferry Like 6:20am ferry. Got my shots slept last night and after the third shot I felt it all at once these sensations like waves going throughout my bones and a bit uncomfortable, So here is sweet Margie getting her last day of chemo,Sooo what I found out i had normal white blood cells are for me 7000,and after the first shot, my wbcells went up to 38,000. So now well just do the math. So these waves of stem cell overpopulation stuff is something else!Kinda like a roller coaster ride,I'm amazed that there is an actual physical manifestation!Just knowing what is going on is so incredible.

Richard said when he saw Margie,she looked so good. I was glad to see she was standing up and didn't look as wiped out as he had expected . So we followed her all around the hutch, and I got a brief tour of the cancer center.Then We followed margie in to get her last Chemo. By the time we got home Margie was tired took a nap, got sandwiches , Margie got up asked Bob where's my cottage cheese? And he jumped and off the store again, What a guy!

Margie; It was sure wonderful having Cathy and Richard with us. We talked all through the chemo, telling old stories about mom, to which the nurse could not help overhearing and went from aghast to horrified to laughing. Richard one story we have to mention is:That when he was about nine he was starving and he was ready to do the daily ritual of exchanging sandwiches with his Buddie and to his dismay Saw a big bite taken out of my sandwidh, needless to say no one wanted my daily peanut butter and jelly sandwich, with moms bite out of it.They went on to enjoy their ham and cheese!it was fun having good conversations with all of us together, and the nurse regretted us not being back tomorrow to tell more stories, and then Cathy said No worries our mother wrote a book about her life! We didn't want to leave the nurse hanging.Still feeling good and having a good day! Love M

P.S. From Richard to Kathleen: I know how to spell prey,PREY! I did all along I just didn't use spell chek.

Transplant on Fast forward

Everything is happening so fast now, like three days before Christmas and time starts dissapearing from right under your feet.

I have started 1/2 of the big guns immunosuppressent meds which will drastically suppress both my immune system and the new stem cells as well. The purpose is to prevent a big fight in there-they put the two immune systems together and then anhesthsize them so they can learn to live together, then gradually remove the suppressents. This takes months and actually one year for a fully functional immune system to emerge.

I haven't had any illeffects from the chemo- I'm getting this three days but it is nervewracking starting (today)the first immmunosupprent because they are so toxic to your major organs. Even the pills are wrapped in foil cocoons. So you don't know if your just going to blow up or what, especially since you're told "everyones different"

I sleep well at night, but how I feel right now is like I have been up for 24hrs. Can't focus on what should I do this afternoon. I have papers to sort and file, ironing to do which to me is not a pain to do, oh, and I have to take a daily shower to reduce the bacteria count on my body. So that will have to be my next move and if your thinking well at least that ritual is pleasant-Not when you have a tube going into your chest- you try to keep it dry and get out as quick as you can.

Another job I have is to drink as close to 80 0z of fluids a day.

Cathy had her 2nd stemcell boosting shots today and she is definetly having some side effects. Some nausea, headache, and migrating sharp acheing in her bones as the cells build up very fast and there is no space for them and they migrate out through tiny rivlets alone the bone itself. She even told me her spine felt like it was pulsating a few times. She was checked by the Dr when she come to the scca this morning and he said these symptoms were expected.

Honestly I wanted to be in bed instead of blogging I want to hold up my end of the stick as best I can and I so appreciate all of your tuning in to this and your love and caring demonstrated in so doing.

Richard,(our brother) is bringing Cathy over to Seattle tomorrow and they will stay at a motel for 2 or 3 nights and take care of Cathy just 2 blocks away.

Debbie, our daughter arrived back from Ca last night.


Taking one day at a time and being thankful for all the opportunities and successes of the past year, I feel good,

I will do my best tonight and tomorrow. much Love, M

The Big Flush / plus, input from the south

Sorry about that guys, Its so exciting doing the transplant we can't even get it out of our mouths, Its hard to believe this day is coming, I Cathy am soo,excited I can't even put into words how this feels, I came over on the ferry this morning with all this excitment and anticipation, got a little blood taken, and got my two shots, Zing!right in the back of my arms two actually, i had another choice... my stomach that would really have been a zinger, I came out of that appointment and there was Margie just looking so beautiful and happy we exchanged embraces and it was just so special you know like a special occation is coming up. Well i'm getting a little mushy but i was telling Kathleen last night its such an honor and priviledge to to this, I mean like i won the contest, Well enough of me,

After i saw Margie and Bob she got her first infusion of chemo, We had a great time chatting and laughing while Bob, faithful Bob kept us hydrated with lots of water and tomatoe juice. So two more sessions of chemo and then the Big Flush and i'm not talking the diarhha kind (Still can't spell that word)The flushing away of the old and getting a fresh new set of stem cells. As Margie was getting her chemo this morning I told her I felt this gravitational pull towards her, my stem cells i can actually hear them calling to Margie We want out. Well ok enough of my silly humor.Just wanted to share with you the jubulation we feel here we know it still might be a long road but hopefully the worst is over, I'm signing out my love to you All Cathy.

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Kathleen here: Thank you all for bearing with me on the ranting of the last post to stay the hell away from Margie. Ok, call me protective... you know I am harmless. Maybe. Anyway, that's not why I am posting:

I am just so encouraged: I called this afternoon and Cathy was there at the apartment doing the above post and they (margie, bob and cathy) sounded like they were just having such a good time, laughing, talking. The anticipation of Tuesday, day zero
is so exciting and Margie sounds good, REALLY GOOD. She's been on a long road and it's certainly not over as the transplant
will send her to a whole "other world of possibilities" (isn't that a fun way of saying freakish side-effects?)

I've eluded to this in the past about the transplant, but the first 100 days is the most critical and she'll be at her most critical.
But, she sounds so good and optimistic: tuesday is such a huge day. She was in for a half hour transfusion of chemo this morning (boy, doesn't that sounds "easy" after what she's been through so far?) and will do that again for the next two days,
then tuesday, full body radiation before the transplant. I know I've written all of this before- bear with me. (I'm known for repeating myself anyway, so why should this be any differerent?)

I'll keep all posted with a "blow by blow" post transplant- Susie M. and I were laughing that Margie needs a web-cam and we can all watch her every move: did you see "The Truman show"? Creepy. Don't worry mom, we won't.

As you can read, I am VERY excited as I know all of you are...Thank you Richard for all of the words of encouragement-
Love,
Kathleen

RED ALERT !!

What's this you say?

Ok, here's the skinny and I'm going to be the one to make sure everyone knows-please pass this along to anyone that doesn't read the blog:

MARGIE CANNOT HAVE ANY VISITORS FROM NOW TO OCTOBER (at the least)

I have to be perfectly clear: Her transplant is going to leave her immune system at it's most compromised, and the most critical time for her NOT to be exposed to ANYONE, ANYTHING. Yes, I've cancelled my trip, and if any of you have any plans to drop by and see her and Robert, please re-think your plans and cancel them.

Sorry to be the wet rag on this- we all know how she loves a party, but not at this juncture.


Kathleen

Positive updates:
meeting with her doctors today and lots of positives going into day minus 5:
Cathy is a perfect match and same blood type as Margie and very positive that there is a large age gap between donor and recipient (donee?) Margie will be receiving the immune system of Cathy, 18 years younger!

Mondays bone marrow biopsy came back looking good and further pointing the transplant team toward Day Zero

Way to go Margie!

Day minus 7, or a long day got longer...

today is -7! Wow, I can barely get my head around that- I'm sure Margie's needing to process it too.
Spoke with her a little while ago so I thought I'd recap what turned out to be quite a day yesterday- as you may recall, her last day of radiation, which sounds like something subdued and calm and was anything but.

Here's how she described it:
Had to be at the hutch at 7:15am for the usual lab work and then found out at the last minute that she did indeed have
a bone marrow biopsy sheduled for 8am- but then after the lab numbers were in, her platelets were down to 9 k and they
have to be at least 10 to do a bone marrow biopsy.

Soooo, off to another bed to get 2 hours of platelets and then reschedule the biopsy for noon.
The biopsy went fine, sedated and awake about 45 minutes later. After that, off the the university hospital for her final
radiation.
Finally done and home at around 5:30. She hadn't realized it, but she hadn't eaten since the night before (in preparation of biopsy) so, this morning, when she was there for her daily blood draw, she was getting dizzy and had to get about 500 cc's of fluid just to get her back to hydrated.


So, as usual everyday still to get her blood drawn, check numbers, get blood product as needed.
Wednesday is the weekly meeting with her doctors. 2 to 3 days before day zero, she'll have several rounds of chemo to once again bring her numbers down/wipe out any possibility of blasts, and then full body radiation on the day of transplant-

Holy smokes.
off to the studio to work this all out on canvas...
Love, Kathleen

two weeks in limbo ends monday

Limbo-on hold,stuck in traffic, in hiatus, circling above the airport, watched pot never boils, days repetitive, a.m. lab, 3p.m. radiation all lasting 20 to 45 minutes.While I lay perfectly still in the prone position with my head down in a mesh mask in which you sort have to fight for air since the mask is mashed against you no holes in it,well, small holes, I end up breathing through my mouth with seems to dry out in no time. But there is no break and you can't talk or kibidtz with the staff. The first time was the worst as I had to maintain this position for an hour and one half.
This is on a narrow table with my arms back at my sides head down in the mask that is down in a hole and my face is positioned so my chin is pointing up, like your poised to jump off a ski lift.

I don't feel anything while the radation is happening. I have had some minor nausea like the next day. It has gone well it is just so mysterious as to what is happening to you, and then at the same time not wanting to know. The Dr. did tell me yesterday it is very effective in eliminating any leukemia cell and that actually there isn't a whole lot in the cerebral spinal fluid that just circulates in the spinal column and in the brain. The normal cerebral spinal fluid is mainly a bathing solution with minerals, glucose and some proteins.

If it has one primary purpose it is to wall off your brain and central nervous system from what ever possible ukky stuff might have gotten into your bloodstream so they are two separate circulations that never mix.

So what is left to ponder but that this is the good treatment that is another step in getting well.

Yes,You came through Deborah L Thankyou.

Thank you for posting while you were on vacation Kathleen. I have felt pretty depleated for doing anything other than what has been required.

Thankyou Susie and Eddie for the cards, music cd and the restaurant tips. Dashiell, we really enjoyed your story you faxed -great writing.

Thankyou Suzy and Paul for the cards- for your records, put down that I was born in 1938 Thanks

Love to all Margie

Day Minus 11 !!

Onward, to transplant day! Day Zero is July 31- one day after Margie's birthday!
Back from Mexico, so now can report from the comfort of my own computer. The last post being a bit cryptic due to the fact that the keyboard, part of the site and html didn't translate from Mexico, so a large part of that blog didn't post.

First off, Dr. Ranier Storb- He's none other than the man that developed/invented the mini transplant! Way to go Margie!
You can read more about him if you're so inclined by following the links over the the right there to the fred hutchinson center and also the mini transplant link.

I spoke with Margie last night, she sounds good. Her spinal/cranial radiation ends on monday. She's had only a couple of known side effects: nasea and fatigue to the tune of afternoon/evening naps. Still in the center everday for the radiation, blood draws to check her numbers as the climb up very slowly from the last round of chemo- All the literature sites that the longer one has leukemia and in and out of remission and more chemo, the longer it takes for the blood numbers to recover.
If we go back in time a year ago, with her first inductions of chemo, some of you may recall that her numbers (white, red blood cells, platelets, hematacrit and a bunch of other blood numbers that I can't spell) came back up fast and furious-

So, her numbers are slower to recover now, she goes in for a transfusion today and is still getting platelets on an as-needed basis.

But, all systems go for Transplant day: Day Zero
Cathy (her donor) will plug back in about a week before, to re-take a couple of tests that were done back when this was first scheduled, and then take four or so days of drugs to increase her stem cell production. She'll be doing the actual donating
on July 30 and 31. All the details are on some previous post of mine if you're interested in knowing more about this very interesting transplant procedure, email me and I'll point you to additional information: kers@att.net

That's it for now, dears-
I know I share everyone's feelings that all of our prayers, thoughts and best positive feelings go out to Margie and Robert and Cathy as she heads full steam toward transplant day-

Love, Kathleen

celebrity transplant scheduled...

Ranier Storb. <way to score the best!
all systems go with the radiation, she{s about one half way through and besides afternoon naps, does not feel any negative side effects at this point.
must sign off, as blogging is burning up pesos on the internet cafe in the mexico hotel.
love to all,
adios!

Back in the saddle again...

Back in the saddle of remission that is! And that means back on the calendar for bone marrow transplant!
Yay, Margie: One big fat CLEAR bone marrow biopsy= eligibility for transplant!
As of our brief phone conversation this afternoon, she says end of July- a mere 2 and 1/2 weeks!!!
Till then, she's got the cranial and spinal radiation going on, lest you think she's got time on her hands-

All for now, possibly. Randy and the boys and I are off the Mexico on sunday. Will check in and post once or twice from there. Until then,
Adios!
-Katalina

Fireworks Week

This is Cathy, I came over this afternoon on the beautiful ferry (except for the price)And Seattle is bustling and getting already for the fourth There are two displays that go on, one over lake Union, and the other over Eliot bay where the ferry comes in.And with all the boats in the waterways everyone is out on their boats.Everything in Seattle comes to a screechin halt in Seattle and just focuses on Independence Day.In this area with all the scenic beauty people really get into it and make plans to do something. To be part of the celebration. Margie says her plans are to eat hot dogs, and get as close to the big fireworks as they can as they are going off.So celebration time is about to begin. What are you all doing for the fourth?

So I arrived a couple hrs ago and Margie answers the Door and she absolutly looks fantastic and its not just the new wig!Although its lovely on her. We talked and laughed about e-harmony. If anyone wants to know about it ask Billy.

Margie says, Seven days after getting out of the hospital, and bolstered by platelets and blood transfusions I'm starting to feel real good. The first four days( the new wig helps!)my body felt like led that has gradually gone away. I'm sleeping nine hrs at night and sleeping an hr in the afternoon.I've got a busy week coming up tomorrow in the morning I get platelets, then go to the hospital for a abdominal ultrasound, why I don't know. Then at four o'clock at the hospital they will do a dry run to recheck all my measurments and positioning for the spinal crainial readiation, to start July 5, for tweleve days. Tuesday is my next bone marrow biopsy, the results of which will determine if i'm eligible for the transplant now. If it doesen't it will mean more chemo, to try and get back in remission. I'll know those results by the end of the week. I'm trying to prepare myself for what i'm going to be told.

It means the world to me that all you bloggers have been faithful to following along with everything here. I know it isn't easy. Your commitment to be willing to travel this road with me even to the degree that this blog allows, gives me great strength and definatly makes me feel loved. I just read in a book written by a cancer patient who said he believes when he receives a card wishing him well, that that card is in fact a physical expression of a prayer.And I'm saying any and all of your best wishes expressions of concerns, thoughts for me and my familys welfare I consider the same. So thankyou.Thank you especially to Kathleen for bolstering, buttresresting the blog over this long six weeks that i have not been up to doing it. Thankyou everybody for your summer plans they were alot of fun to read.A special thanks to Lara for giving us a tour of the East Coast with her family.Lara we so enjoyed the Haiku. Love to All Margie