Information on what's happening now

Ok, so I think everybody's now got the idea that there's been a change of sorts, as in, Leukemia cells in the last biopsy, so
the treatment is being detoured to include something else, to get Margie back into remission.
I found an overview to further make your eyeballs roll back into your head. It's important to keep in mind a couple of things as you're reading this:
1. So far, there is no cure for Leukemia, so a person being treated by "traditional means" ie; by an oncologist that is using the treatments available to them may only have access to traditionally used treatment: chemotherapy being an example.

2. Margie is at a research hospital. Not only are the treatments being used way ahead of the "traditional" but also, treatments for the benefit of not only Margie, but those Leukemia patients that come after her as well as the top notch transplant team members who not only administer treatment but also are there to research and figure out how to beat this crappy disease.

So, the level of care and medical direction is far ahead of what we are typically used to and used to hearing about.

So, I'm (kathleen) am writing some information further explaining Margie's type of transplant but also the treatment that will begin soon so as to put her back into remission. (so that she can have a transplant)
Stay with me: this is equally profound, exciting and cool (mixed with some freaky) all with the goal of getting Margie past Leukemia!

Acute myeloid leukemia (aml) is a malignant disease of the bone marrow. This disease is usually treated with aggressive chemotherapy if patients are fit enough for this treatment. Unfortunately, this chemotherapy cures only a minority of patients. The results are poorer in older patients because the disease might be more resistant to treatment, and pateints are less able to tolerate the aggressive treatment. Bone marrow or stem cell transplants have been performed to try to increase the number of cures by reducing the relapse risk. This procedure has been mainly used in patients undeer the age of 50 because the risks involved in the treatment increase with age. Part of this risk relates to the high doses of chemotherapy and/ or total body irradiation, which are given to the entire body to attempt to kill the cancer cells and prevent rejection of the donor cells.

We (transplant team members) have performed an initial study to test whether stem cell transplants can be done with lower dose treatments in older patients. The aim of this treatment is to eliminate cancer cells by an immune reaction of donor cells against the cancer. We have experiencein more ethan 100 patients treated this way, mainly between the agesof 50 and 72, with a variety of different blood cancers and treated at three collaborating centers. Used by itself, this new appproach appears safer than standard transplants and has often been done mostly in the outpatient department. In most patients engraftment (growth of donor cells) was achieved, and in those followed for more than 2 months rejection of donor cells occurred in only one patient. The main side effect of these transplants has been graft-versus-host disease (GVHD), an immune reaction of the donor cells against the patients body. This experience has encouraged us to further test the effectiveness of this transplant in older patients with AML.

It is known that immune reactions of the donor cells against cancer contribute significantly to the ability to achieve cure after transplantation. One element of this research study will be to test whether immune cells, specifically lymphocytes, from the donor can be used to treat AML. The main reason for using this treatment is the evidence that strong immune responses can occur from donor lymphocytes and remissions from cancer have been reported in patients whose cancer came back after a bone marrow transplant. This type of treatment is called a donor lymphocyte infusion (DLI). It has been shown that it is possible to get complete remissions of the cancer by using DLI. This type of immune response against cancer cells is usually called a graft -versus-leukemia (GVL) effect. Thus one aspect of this treatment will be to establish growth of donor cells in your body in hopes of obtaining a GVL effect. This is achieved by giving treatment to suppress your immune system at the time the stem cell transplant is given. Unfortunately, the same immune responses that lead to a GVL effect can also cause graft-versus-host disease (GVHD), which can manifest itself as skin rashes, nausea, diarrhea and abnormal liver function. It is not possible to clinically measure the amount of GVL that is occurring following a transplant, but evience of GVHD is readily apparent and can be used to establish the presence or absence of GVL. If you do not develop GVHD by 56 to 84 days after the transpnat and have had successful growth of donor cells, we will give you another boost of donor cells in an attempt to maximize the GVL effect. If t here is still no GVHD by 65 days after the first boost of donor cells, we will give you a second, higher dose boost of donor cells.

However, for patients with advanced disease, the GVL effect may not be enough to control the disease. Thus a second aspect of this treatment will be to use a new approach designed to deliver more radiation to your bone marrow ans pleen where leukemia cells live while delivering less radiation to non-leukemic tissue. This is done by attaching ("labeling") radioactive iodine (a molecule which produces radiation) to monoclonal antibodies and injectivng theminto the body using your Hickman catheter. Monoclonal antibodies are special proteins made by mouse cells grown in sterile broth, and are attracted to target molecules on the surface of the leukemic cells as well as normal cells in the bone marrow and spleen. By attaching the radioactive isotope to the antibodies, we hope that hte antibody will carry the radiation to leukemic cells and kill them. We have treated over 70 patients with this technique on other research studies for younger patients, combining the radiolabeled antibody with conventional transplant treatments. In this study, we will combine the radiolabeled antibody with the low -dose immunosuppressive therapy in an attempt to kill many of your leukemia cells so that the GVL effect has a chance to kill cells remaining after treatment.

Still with me?
That's an overview of treatment for AML. It reads a little backwards, as mom will be given the antibody therapy first, then onto transplant. Needless to say, your positive thoughts and prayers are appreciated- I personally visualize an aura around her that represents her success and eventual transcendence over Leukemia.

Susie D, thank you for your beautiful thoughts- my parents love for eachother is so apparent as seeing them hold eachother up through this is inspiring as it would be no other way.
Love, K

p.s. , I would like to take just a moment to encourage anyone that has been reading but not commenting to take the next step... click your mouse on that comment link right below here...it's easy. I recently highlighted it in red. ( need extra motivation? you'll be published!)
really, just click it...now... do it. I promise, your computer will not blow up. if you need help with it, email me!
artgirl62@earthlink.net

Acknowledgement and Thankyous April 27

As I am thinking who to start with like kathleen and Elenor for coming to see us last weekend my mind goes to all the people who helped them to do that. Barbara who drove her mother to Sacramento airport and to pick up, totally a four hour drive, and Betty who tookcare of Elenors great granddaughter who Elenor has provided a home for. Then Randy and Laura who made Kathleens trip possible...All of us do what we do with more help from others than we take time to reflect or even be aware of. Like the ripples that are created throwing a pebble in a pond. Not a perfect analogy but you get what I mean.

Thank you Rachel,Joe, Richard, Eddie, and Susie for your comments, feedback information and poetry.Eddie, I love your(Bob Dylan) lyrics and after I put Grampa's psalm, they seemed to go together!They are running through my head at the same time somehow,so I'm going to print a copy of both and carry it with me through this and endeavor. Also thankyou Eddie for the beautiful red bag and the miniture 'Abba Zabba candy!Abba Zabba!was the word we shouted out, out fishing when an albacore bit on a line and stretched out the shock cord while trolling.We really enjoyed them Eddie.

April 28
After I wrote the above we proceeded to have an eventful day. During a morning appointment the Dr told us I have some Lukemia cells in the marrow.
1.They biopsied bone in addition to marrow. for the first time, in my case the lukemia was scattered here and there in clumps, some places with no lukeimia. So you don't know in advance if any given bone sample will show. Wheather it would be a clea area, or an area with clusters. If the sample is out in a clear area they would tell you your in remission and you wouldn't be. In the marrow part of the bx, which is what I've had before, it was clear of L. as it has been since the 2nd bx nine months age. This part of the bx continued not to show any disease. Without the bone part of the bx, they would believe I was still in remission and gone ahead with the transplant when I really was not.

So when they told us I'm no longer in remission the DR. came in and presented another protocol which is more intense using radiation that goes directly to the L. cells.

Now that they know whats in there they inject an antibody that finds lukemia cells with a radioactive substance which is attacted only to bone marrow leukimia cells, when this glowing antibody finds a lukemia cell it gives it a dose (lethal radiation) and moves on.

Positive point #2

This is a wildly precise form of treatment.Generally, with any cancer treatment they can't know if all cancer cells are gone, radiation and Chemo do not just go after sick cells like this does.

God knows if it will come to this, this is what they say today. To get the transplant I will have to provide a 95% clean bone sample after the treatment.

Out of control point #3 Is there a mouse in the house?

We were told the antigen conponent is derived from mice so I would have a test to show I do not have an antibody to mice. If I did, it would show it would render the antigen ineffective so the treatment wouldn't work. As the doctor moved on I stopped him and said we had those (White rats, your history comes back to haunt you).His eyes glazed over, did one ever bite you?, No. Later we wondered is a rat different from a mouse?. I just told the Dr. I didn'g know why the hell we had them, the kids wanted them!

Future positive point #4

The degree of success they have had with "antibody therapy" he didn't say what that was;has caused them to include the older person.

I'll post more later. I am still seeking more info and I have an appt with the same dr that presented me with all the above tomarrow to clarify and ask questions. But the transplant that was planned is out because I am not in remission.

We have had a good day today, Cathy is here and we are all settled in our home away from home- out flat. I feel good and it is fun and invigorating to be in a different environment. We will go home overnight tuesday. Taking one day at a time and enjoying everything. I read psam 27 and 18 again last night and kept reading other ones adjacient to those,and wanted to keep going trying to have an awareness that this is a good thing to do, it is a worthy thing to do,This is truly meditation and is beneficial and put you in touch with human experience thousands of years ago, it feels weighty and somehow calming.

Love, to all the family meaning all reading this, thankyou for your daily caring thoughts and support. Margie

Leukemia is a pain in the butt, or, a bit of a "detour" for Margie

Ok, so I'm editorializing todays title. Margies had a bit of a set back and I'll explain as best I can and maybe she'll pick it up
where I left off. Also, check out the comment posted by Susie on Margies last post as her comment explains some of this also.

Spoke with Cathy this morning and she explained that from last weeks bone marrow biopsy, they found leukemia cells.
That means that she's not in remission and if she's not in remission they won't do a transplant. BUT, the good news is that
the bad cells were found in "patches". So, sometime next week I think, they'll be doing a procedure that involves attaching radiation to antibodies (from a mouse!? huh?) and then the antibodies "find" the bad cells and get-em'.

I don't even pretend to know how in the world that all works.

So, then she's in isolation five to ten days (!) due to the fact that she'll be all aglow with radiation and there are some crappy side effects, then they'll schedule the transplant again. (once they do another bone marrow biopsy and determine that they got the leukemia cells)

Obviously, I need more information but in the meantime, I'm working putting a couple of links on the site for you that explains the antibodies function and what the procedure is.

I'm sure Margie and Robert are frustrated and upset as we can only imagine the roller coaster they have to endure. But as Susie points out in her comment, they are a positive, healthy people in a world class facility and completely dialed into the best care. I must also point out that when I was there over the weekend, once again I was witness to a level of grace that was a privilege to be around.

God speed.

-K

An Easier Day

My brother and sister Cathy and Joe, have been sharing our dads bible. We were all suprised when we looked at his bible that he had done art work on the inside, all kinds of color and drawings of flowers, and underlining different passages in different colors, and little personal notes. Cathy found one of his favorite passages and read it to me and it was very moving, hearing that that was one of his favorites. I would like to share that with you all

Psalm 27
The Lord is my light and salvation;
Whom shall I fear?
The Lord is the defence of my life;
Whom shall I dread?
When evildoes come upon me to devour my flesh,
My advasaries and my enemies, they stumbled and fell.

Thou a host encamp against me
My heart will not fear;
Though war arise against me,
Inspite of this I will be confident.

One thing I have asked of the Lord that I shall
seek;
That I may dwell in the house of the Lord all the days of my life,
To behold the beauty of the Lord,
And to meditate in His temple.
For in the day of trouble He will conceal mein His
tabernacal;
In the secret place of His tent He will hide me;
He will lift me up on a rock.
And now my head will be lifted up above my enemies
around me;
And I will offer in His tent sacrifices with shouts of joy;
I will sing, yes I will sing praises to the Lord.
Hear, O Lord, when I cry with my voice,
And be gracious to me and answer me,
When Thou didst say, "Seek My face,"my heart said
to Thee,
"Thy face, O Lord, I shall seek."
Do not hide Thy face from me,
Do not turn Thy servant away in anger;
thou hast been my help;
do not abandon me nor forsake me,
Oh God of my salvation!
For my father and my mother have forsaken me,
But the Lord will take me up.

Teach me Thy way Oh Lord,
And lead me in a level path,
Because of my foes.
Do not deliver me over to the desire of my
advasaries;
For false witnesses have risen against me,
And such as breathe out violence.

I would have despaired unless I had believed that I
would see the goodness of the Lord
In the Land of the living.
Wait for the Lord;
be strong and let your heart take courage;
Yes, wait for the Lord.

Love Margie

day -14!

Wow! are we at day minus 14!?
Spoke with Margie this morning. She sounded very good as always. She was in for her I.V. drip.
Todays menu includes:
meeting with a social services care giver
neurologist
dermatologist
and then back to the I.V. pole this evening.

Since Margie is seeing a dermatologist today, I'll use this as an opportunity to plug skin health:
We are a moley people. 2 years ago Margie had a malignant melanoma taken off of her face and shortly afterward, I finally got
around to going to a dermatologist and low and behold: a mole on my shoulder was biopsied and determined to be malignant.

The moral of this story: (several actually)
Don't depend on your general practitioner to spot potential problem skin stuff. My mole was out there for all the world to see and no General Practitioner EVER said anything about it, but the dermatologist saw it within 2 seconds and said "that comes off today".
Don't cook in the sun. Boy, if I knew then what I know now. I did it all and regret it. The sun is not my skins friend
and now I am paying the price. I'm moley like Margie and all you Szabo's out there need to see a dermatologist.

p.s. Neutrogena makes a fabulous spf 55 that goes on very light, not sticky and is fantastic. Best price going is Costco.
So, that's all I'm going to say about that.

I digress...

A couple of bits and bobs about leukemia and bone marrow transplants:
(stuff comes up when I talk to people and so I think it may be important to mention them here)

-Blood is a major organ like any other of our major organs. Lungs, heart, liver etc. So the fact that Margie is having a bone marrow transplant is like any other organ transplant and thus, will be monitored closely for rejection. Organ transplant patients are put on anti rejection medication to further encourage the organ to live happily ever after in the recipients body.
Most organ transplant patients have to stay on anti rejection meds all of their lives and the meds themselves can be very harsh. The good news is, for a bone marrow transplant patient, most of the time the patient is tapered off of the drugs and then eventually does not have to take them, sometimes within five years. Very encouraging.

I've written about DAY 0. (zero) That's the day of the transplant and in transplant speak, the first 100 days post transplant is the most critical time period. This is when Margie will be at her lowest immune tolerance, the organ can be rejected, she's at the highest risk for side effects and graft vs. host disease. The average transplant patient takes 20 medications every day.

After she get through the first 100 days, the next critical time period is the first year post transplant. An excellent analogy that she told me yesterday was to think of the first year, post transplant as like a newborn babies immune system. Makes sense.

That's it for now, off to do my other job of raising kids and running my business...
p.s. Dash, Susie and Eddie: thanks for the props on the blog. I enjoy it and I enjoy making sure everyone is as up to date as possible on mom. I wish I were there, but I can't be so I figure that everyone has their individual "role" or job.
So, this'll be mine. Plus, mom and dad are really enjoying it and reading their biographies. Wouldn't we all.
Love, Kathleen

did I really write that this week would be less taxing?

Oyvey! (that's yiddish for holy cow!) did I say last week that this week would be less taxing? I take it all back.
On the menu today?
7am I.V., then fasting for a catscan, off to a pharmacy meeting, more fasting for a 12 vial research blood draw and a
gynecological meeting. (girl stuff)

Margie sounded great this morning, oatmeal for breakfast (apparantly inspired by Eleanor's confession that she's had
oatmeal for breakfast EVERY MORNING since about 1977)
The 1+ hour I.V. makes a big difference.

little stuff answers: the I.V. will be a 2 week thing (now a week and a half) and yes, their mail is being forwarded to
the apartment in Seattle. Won't be publishing the address on the web, but if you'd like it, email me and I'll pass it along:
artgirl62@earthlink.net

Susie, thanks for the tip on that blueberry drink (see comments). Sounds like something we should all be drinking.
I put it on my grocery list for my next health food store trip.

Oh and for those keeping track: today is day Minus 15.
Oyvey!

bad news/ good news

Good morning! Well the bad news is that Medicare in all its wisdom won't cover mom having a pump at home to administer her own i.v. of antibiotic.(never mind she's a retired nurse and it is more cost effective to not administer it at the Hutch) So, she and dad have to be at Hutch at 7 a.m every morning and then again at 7pm.
Of course, she's there most days anyway, but the fact that this is tagged on to the beginning and end of each day just stretches it out, doesn't it?
The good news is that they've been able to reduce the amount of time she has to be sitting there with the i.v. I'll explain:
On sat evening for her first i.v. of antibiotic, it was started up on a certain "speed" and she had a reaction to it called "red man" whereas her chest and neck and hairline turned red and she was getting hot/flushed and itchy. So, the i.v. was turned down to a slower speed as not to rush it into her body. So this speed resulted in the 2 hours.
As of yesterday however, her body has become used to the antibiotic and they made the wise decision of speeding up the drip
and it reduces the time by 50%. So instead of an i.v. twice a day for a total of about 5 hours, she
only has to do it for about 2 ish hours. Much improved!

So much for sleeping in!
Today is her day to have a lumbar puncture or what's known as a spinal tap.
Much love to all of you, I know margie feels your thoughts and prayers and well wishes-
Kathleen

pictures from our seattle adventure

and... besides the pictures of yours truly with her parents, here's the pie that launched a thousand jokes...
(seriously, delicious) I will get the recipe and post in the future.

My apologies... I am new to blogging and these pictures ended up a little scrambed.
anyone needing clarification or info can email me at
artgirl62@earthlink.net

pictures from our seattle adventure

Robert holding up a chart of the workings of our blood and all the functions: I'll try to find a link to this chart.Stay tuned

pictures from our seattle adventure

of note here is the picture with mom and her sister Cathy, donor of stem cells!!!

pictures from our seattle adventure

pictures from our seattle adventure

pictures from our seattle adventure

here's some various photos from our weekend with mom and dad. Luckily, when we were on the island for about three hours, dad had the forsight to stop at Mike and Carol's tree farm, otherwise we wouldn't have seen them at all!
Unfortunately, we didn't get to see Rod and Colleen! Miss you both!

In case I can't get the text lined up with the photos, I'll put them in this order of appearance:
all the first one's will be the star of our blog.
I'll then post the pictures of Margie and Eleanor (life long friend and provider of much hilarity)
Then the pictures of us visiting Mike and Carol's tree farm
Pie going to Seattle

Life as a pre-transplant patient Day minus 19

This will be today's final post I think, since I'll be back in S.F. tonight-
Alrighty....
Up at 6am this morning, coffee and off to Hutch for an I.V. drip of Vancomyocin.
It's a heavy hitter antibiotic for heavy hitter's like Margie.

We still don't know what the origin of the infection is, although the team has told Margie that they will let her know after a little more time in the petri dish. (the germs, not Margie)
She has had the Hickman Cath for about 10 months, so the likely hood of this happening eventually is present. Margie practices excellent infection control so it would be important to find this out now so that if any behaivor can be modified, it will. Will keep you posted on any infection updates.

The 2 1/2 hours at Hutch this morning were very pleasant. Got to have some last visiting with mom, dad and Cathy and then Cathy, Eleanor and I got a tour and a excellent lesson in the area of the unit where Cathy will be getting her blood
taken and it's seperated, cleaned, sorted and counted. Mom will get 5 million stem cells per kilo of weight, which means she'll be transplanted with about 30 million
stem cells by the end of the transplant. As I mentioned, May 10 is the tentative DAY ZERO.
Mom, Dad and Cathy then got a lesson in administering her antibiotic themselves, as she has to have an i.v. two times a day and it takes a bit over 2 hours each time.
Unfortunately when we went to pick up the i.v. pump and the drugs and all the paraphanelia, we couldn't get it due to it being sunday, and there were insurance questions that can't be answered till monday. So, tonight Mom and Dad go back to university hospital and get another 2 hour drip.

Tomorrow will start early at 7am at Hutch with a blood draw, then at 8 will be a procedure called a Muga which means that they'll inject dye into her cath line that goes to hear heart and the information that they see will be added to the bigger equation of the transplant.9:30 is her antibiotic i.v. drip, After that: 11:00 am, a meeting with a social worker, 1 pm,nutritionist,2pm: Dentist, Hygenist and then at3pm, meeting with the blue team RN.

Did I say that this week would be less taxing? I'll take that back.


Cathy here, Its been great having Elenor and Kathleen here needless to say hardly any sleep. Its amazing no matter what kind of setting you are in when your with Elenor theirs always laughter.

Margie says she can feel all your prayers each and every one. If you are reading this I feel you are communicating with me and I know you are out there. We have had alot of fun and laughter the last two days, We knew we were gonna have fun but this surpassed all our expectations. We even have some new funny stories about the now famous cherry pie. We are so thankful for our family and support, see first blog from Margie. Its a bright sunny day Love Margie.

Pie takes Seattle Ferry

Never a dull moment. If you've been following this blog in the last 24 hours you've seen that things are changing nearly every couple of hours.
So as I wrote, we arrived on the island, saw Mike and Carol at the tree farm
and went to the house where Eleanor proceeded to make two pies for enjoying after our dinner tonight with Rod, Colleen, Mike, Carol, Eleanor,Cathy, Mom, Dad and I.
(shall we say, team Bainbridge?)
Anyway, mom went to the store to get a couple of things for the pie, and by the time she had arrived back from the store, the hospital called to tell her she did have a infection and needed to come back on the next boat to begin an i.v. into her hickman cathetar at the university hospital.
So, we all had about 9 minutes to rush around, pick up our luggage that we luckily had not unpacked, grab whatever was needed (including one pie!) and jump in the car to get the boat. I'd say, not too shabby considering how long it can take for four people to get into a car with their things to get to a boat.
Out the door, to the boat, over to Seattle, drive around Lake union to University hospital, mom get's plugged into a line in a room and then we wait for 2 hours whilst she gets what she needs in the way of antibiotics (vancomyocin)
So, I ordered take away from Outback Steakhouse (the petite filet was very good)
and we left the hospital, drove by Outback and picked up dinner, then back to the apartment where we now all sit, at 10:30, digesting our food enough to make room for a slice of Eleanor's pie. (when I'm back in SF, I'll post photos of our trip including pie)
So, will be tucking Margie into bed, she's good and will be back to Hutch tomorrow at 8am for another 2 hour drip, then back to the apartment...
p.s. Mom: "the pie was a symbol of the fun experiences that Eleanor and I had so long ago in Stockton and so delicious that her family demands it every holiday."
It's called cherry cheese pie.
Good night and God Bless

I've got a fever over you...

Actually, we don't know why Margie got a fever last night. Mom and dad went back to the hospital and her white cells were fine but we could just say that she'd had a long strenuous three days, a bone marrow biopsy that same day, skipped lunch and had been on two barbituates. I'd be running a fever too.
So, she went to bed with a normal temp, and woke up with the same normal temp, so we went to breakfast at CJ's (try the sunlight omelete) and then took the 10:30 boat back to the island.

All is good.
The even better news is that
a. It's official that Cathy is up to snuff and has passed the test and can officially be Margie's donor!!!

b. For Margie and Bob next week, it's less about physical tests and more about conferences, nutritionists, care giver information, social workers, etc.

The only exception is that she'll be having a lumbar puncture (spinal tap) next week.

So, that will be a huge break since the last three day's have been very physically taxing and they need much rest.

I think I mentioned before that she has a transplant team. We'll now refer to them officially as the Blue Team (I didn't make that up)
Mom's team consists of:

Margie
Bob
Cathy
Attending Physician
Physician Assistant (P.A.)
Nurse
Scheduler
Nutritionist
Social Worker
Cardiologist
Respitory
Infection Control expert
Pharmacist

Go BLUE TEAM!!

day minus 21

ok, so you're with me. we're on day minus 21, twenty one days from day zero or transplant day.
Kathleen here. Wrapping up the day. Eleanor and I arrived at about noonish today and went straight to the Hutch center to meet up with mom, dad and Cathy (the blue team)
Eleanor and I went up to the 6th floor and found mom and dad there in the very large waiting area as margie had just come out of having a bone marrow biopsy and was sitting in a recliner trying to rest. Her hair is growing back in and frankly looks fantastic. When I'm back to my own Mac, I'll post a couple of pictures but for now all of you will need to feel satisfied with the fact that her hair is salt and pepper, about two inches long and fab-u-lous!

Before the bone marrow biopsy today was a blood draw (9 vials!) and an EKG. Then onto the biopsy. This is the fourth one and is still perfecting exactly the right meds to get the comfort level right without being completely spaced out on it.
This time around, she started out with Adavan and then got to partake in her first
Fentanyl lollypop. I've read about this particular pain med and am aware of them.
The lollypop did the trick this time and Margie was feeling pretty good about this new discovery. After some relaxation in the chair, it was time to go back to apartment, take a nap and get some dinner before heading back to the island for the night. Margie's already making us laugh through all of this, in the elevator referring to the procedure as a bibopsy and saying that she told Mike the night before that she was going in for some bone meal. Sounds like these lollypop's are the way to go, alright.

Margie got a nap for a couple of hours, seemed very refreshed and we heading out to dinner at the Outback not far from the apartment but we never made it due to her temperature going up in the car (101 f) so we went back to the apartment, she heard from the Doc and she and dad headed back to the hospital so she could get checked over and have her white blood cells check as to rule out infection. So, Cathy and Eleanor and I went and got Pizza not far from her at Pagliachi's (recommended!)
So, we came back and ate, and margie and bob returned after about 1 1/2 hours where they finally had something to eat. So, we're here now since she's got to monitor her temp tonight and be nearby the hospital if it goes up. No island tonight.
Mom's jotting down her thought and will likely post soon-
Love to you all,
Kathleen

on day -23

first an explanation of today's title (this is kathleen writing)
Margie's tentative transplant day is May 10 which in the transplant world is Day 0.
So, based on that day, Margie's first day at Hutchinson out patient (Seattle cancer care Alliance) is day minus 23. Get it?

I am up in Seattle today, friday, it's about 4pm and margie's taking a nap. She had another bone marrow biopsy done today at about 1pm and by the time we left Hutch, came back to the apartment, she was wiped out, so time for a nap.
I'm transcribing here what she wrote on her first day, wednesday day minus 23:

9:30 pm:
It's hard to stop and write tonight after our first day at the cancer care alliance.
I feel good but exhausted mentally. Everything went perfectly, they have a system and organization that takes care of you and makes you feel you're in the right place- reassuring I guess- no one is running out the doors.

Four hours includied blood draws (painlessly) from the hickman catheter, medical history and physical, having a schedule explained to me for the next two days while Cathy had a EKG, blood draw(ouch), chest and x-ray.

Tomorrow I get what Cathy had and we attend two conferences, one with the attending physician.

I was also assigned a medical team designated the "Blue Team" . So, I'm off to bed and mercifully we don't have to return tomorrow till 1pm. So, a relaxing morning at home sounds perfect (at the apartment)

April 19th:
No appointments till 1pm! But they sent us home with paperwork to read - hours of it. Research consents: as in "can they take an extra vial of blood for 9 weeks on and on and on...It took four hours to read it all. I was spacey by the time I got to the clinic.

So, chest x-ray, EKG, met with finance people, found out I have more drug coverage than we thought. Then onto pulmonary functions which was hard because we're not used to emptying out our lungs on command and I had a tickly post nasal drip throughout so I loosened my tight clothes and started again doing better this time.

Then on to my first assigned Doctor Riddel- liked him- reviewed transplant process and signed consent for it then went over all the research consent requests. I am giving an extra sample (called a "pull") of bone marrow for research which I hope they appreciate - for the good of others.

all for now, margie's up from her nap and will post more in the next two days so that we're all up to speed...
Love from Margie

It has been a beautiful day

Dear Family,

Yes, it has been a beautiful day, this was our day to go see our flat just four blocks from the Seattle Center. The neighborhood is called Lower Queen Anne. There are lots of shops, restaurants and coffee shops around. For you Orgonions there are several Mcminivans resturants in Seattle and one of then right near us so we went there after getting the keys to the Apt.
The place is homey, two bedrooms living rm. a balcony you could bar b q on, one bathroom. Wifi, dvd. Kitchen small but complete. It's not fancy but is clean and in good state of repair. It is completly furnished I had to take it sight unseen because I quickly realized these places go fast and I didn't want to be doing this at the last minute. These places rent by the month and are set up for the purpose of providing housing for people who come from all over the country or world for medical reasons to the Fred Hutchenson Cancer Center although they are not affiliated with the Center.

I talked with Cathy my donor tonight. The Hutch has contacted her and told her she has quite a prepratory regime herself. She said " I have to have shots for five days to build up my stem cell production! and she said it can make me feel like I have the flu" "but thats ok margie" I am fixing the 2nd bedroom up real nice for her.

So it is like I am being inched towards this thing- first the flat and fixing it up with some things of my own, then starting the evaluation for two weeks with Cathy being evaluated too.
Then a few days off and sign all the consents and then I'm in it, chemo for some number of hours per day- go to the flat at night-for three days.
Then one session of total body radiation and back home [flat]. A couple of days later Cathys blood is collected from her arm and infused into me through my Hickman catheter which I have had since last june. It is like a blood transfusion but it is mostly stem cells which know exactly where to go- they actually permiate the microbone circulation through the bone and into the bone marrow itself.
After that I am monitored for signs of rejection of the transplant and have been given immunosuppresive drugs from the time I was started on the chemo. I am at most risk for infection for up to a year.

Well that is it for now, thankyou for all who have written in the blog. Lisa, Colleen B. Richard, Debbi, Randy, God bless you all- all meaning anyone who reads this too. Love, Margie

New beginings

Hi all, first off anyone who reads this I consider family, and I thank and appreciate any and all participation and that means even checking it out with or without entries. I will feel your caring and support anyways.

Thank you Kathleen for this wonderful surprise- this blog- I told you I hoped for lightheartedness and some fun for me and those who read or comment and as I make this very first entry I am having fun and it is happening right now. So it is a done deal.

So I want to say to my family,[see above] you say or express anything you darn well feel on this. My wonderful life is an open book and there are no confidentalities with having this leukima, there are no subjects to avoid, no questions that I wouldn't want to hear nor are there any words of encourgment that are lame or not good enough as in "I wouldn't know what to say".

I also want to say that I want to use this communication tool to full advantage and I see that as me saying- shareing a whole lot of things be that experiences, feeling, beliefs or opinions, and in that sharing, this is just me trying to give voice to help me through this by talking to my family and having the feeling that I am being heard. Never meaning any putting my beliefs on anyone else or trying to make others feel sorry for me. I am not eleciting anything from anyone else or trying to make you think about ukky diseases.
If I go off on a tirade let me rant, if I seem to be pontificating on something I'm just trying to explain a deeply held belief and the beauty of it is you can just click off and nobodys the wiser. In the process I am learning more about using the computer and feeling in touch with the most important people in my life. So thats where I'm coming from.

I too want to thank Susie for all you help as Kathleen did at the beginning of this blog. Susie leaves no stone unturned in persuit of fact, truth or whatever else you want. There just are hardly words to say how much all of your help has meant to me. The books, of all types, the internet information,the phone calls to me and the Fred Hutchenson when I was feeling lost that got it all back on tract-----Thank you dear one.

For now I should get some dates for things to start on mon. April 2nd. In the meantime we have secured a furnished Apt. in Seattle where we are required to live for about four months. Summer in Seattle


We totally feel upheld by each of you and your love and caring

Come see me again soon, Love, Margaret, Margie, Mom [MMM]