Margies wonderful life!

additional info added to last post:

2008-07-28T09:52:00.001-07:00

Just learning more about this eye thing she's contending with so I thought I'd update: In regard to the cells that I mentioned: this is one of the possible side effects of radiation and chemo- affecting the eyes, so it's not so much that she has a temporary condition or infection but that this is a result of her treatment, so we really don't know if/when her eyes will function "normally" just as she has neuropathy in her feet. Recovery is possible, but there isn't a magic pill that's going to make it go away. It's been about 10 days since her eye's were diagnosed, and she says they're better, but it's an ongoing irritation throughout the day, adding drops every 30 to 60 minutes, etc.
will post more before I go back to SF, all for now.
K

It's been so long...

2008-07-23T10:26:00.000-07:00

Since Margie hasn't written since her May flowers post, I'm visiting for a week or more and thought I'd just jump in and let you know how the heck she's doing.
In a word: really good. That's two words, but still captures the feeling.
Currently she's dealing with an bit of a nuisance with her eyes: as a result of the radiation to her brain/head, it's affected her eyes in so far as the lubrication of them. We've all got two main lubrication sources with our eyes. The ducts that make them tear and another area that controls the 24 hours lubrication of the eyes. well, her cells in this department (the 24 hour one) haven't been working correctly due to the previously mentioned radiation and so she's had to jump through some hoops what with discomfort, pain, hurting eyeballs, figuring out that an ordinary opthomologist wouldn't suffice and ended up at the hutch last week with a doc that deals with the eyes of transplant patients such as Margie. If you'll pardon the pun,
BULLSEYE! By sunday her eyes were feeling much better and on the road to recovery. They're making a little progress every day. Yesterday she said that if normal were one and bad were 10, she's come to about a four, so that's great.

Overall, she seems terrific. Her day starts with pre-breakfast meds (about 6) then a dessert of about 8 more, comprised of transplant specific drugs and vitamins. The day ends with the same regime. I would describe her energy as steady and consistent, but ready for a nap in the afternoon as well as bed time at night. Her body is at an ideal weight for her height, so she looks fabulously perfect in her clothes. Dissapointingly, her hair has not come back to the pre-leukemia lenghth, luster and fullness that she's enjoyed her entire life, but luckily has a wardrobe of wigs with which she can cover her head.
Some science fiction type results of the stem cell transplant: her nail beds and finger nails have morphed completely into a whole different set of hands. Weirdest thing- her nails have always been sort of "stumpy" if you will and never could grow the coveted 10 nice finger nails. Now, the whole enchilada of the nail bed and nail has completely changed and she's got this long, perfect oval specimins of nail perfection!
Another amazing post transplant side affect: a reduction of some of the wrinkles on her face and chest!! Sign me up already!
I hope this gives you a small overview of how Margies adventure with leukemia is going.
All is well and she's doing great.

may flowers

2008-05-02T11:59:00.000-07:00

I can't believe how much better I feel now that I am a couple of weeks away from the cylosporin. Even the small dose I was on at the end of the taper still gave me the exhusted feeling. I'm still taking some two hr naps most days but I feel much more myself and able to focus on things like mothers day cards and the ordinary events of day to day living. The drug was also elevating my blood pressure so I stopped the blood pressure med but my bp started to go up again. I am taking the bp every day and have been in touch with the Dr. who said to monitor it and take the med accordingly so I am. I am taking the bp med again started with a 25mg instead of the 50mg I had been taking but the bp kept going up- 150/90 so I went back to the 50mg.
I must say my caregiver, my husband, makes life supremly comfortable for me. He fixes breakfast every morning, does the dishes laundry grocery shopping vacumming and sets out my morning and evening meds including recording everything. So every time were at the Dr.S, monthly now, and he asks what medications are you on? He just whips out his up to the hour list and I don't have to remember or say anything.

May flowers and getting back on the treadmill is my program now. Fortunatly I was offered the use of a treadmill in my neighborhood, just accross the street. I would love to return to the gym but I am afraid of the chance of infection. So this will fill the bill. I know I have lost muscle mass as I pretty much stopped exercising the last four months- I'm ashamed to say it- because I know totally it's importance and I've mostly had a consistent exercise program in the past. In fact I got a reward- tangible proof- of my efforts when I had the test to evauluate lung capacity. The technition showed me on the graph when you exhale with all your might, the graph will just show a small hill if your abdomenals are weak, but if your abs are strong the graph will show a high spike and mine was way up there even tho I hadn't done situps for several months. God that was good to hear and see! It
almost made that miserable test worth it.

Love to all, Margie

good doctor visit yesterday

2008-04-20T19:25:00.000-07:00

Yes, I had a good visit. My dr is a very upbeat person, and starts out the visit saying " you look beautiful as always and your doing so WELL!!! how is that for a boost?
One disappointment is I am being treated for a urinary infection for the third time in five or six weeks-like he said, it probably never went away but the good-great news is that yesterday was my last day on the immunsupprent drug cyclosporin. Over the last several months they took me gradually from 200-250 mg a day down to 25mg and that ended yesterday. He also said my immune system will grow quickly without the suppression and his hope is that will take care of a another recurrence of the urinary infection in fact, he said I would be my old self by August! I was so thrilled to hear that I didn't know if another year would have to be spent vulnerable to infection. Presumably, as this immunosupprant has decreased, the immune system has been growing, and I'm not starting from zero. One side effect of the drug is it raises blood pressure so I have had to be on b/p medication to keep it down. It was 128/82 at the office to I'll have to start taking my own b/p to monitor it. He said I could stop it -whenever.

We are getting hail in mid April.

I know I am finally getting more energy back. It's nothing to write home about but I rarely have the weird-to- my-core exhausted feeling,like can I make it to the bed. and then after sleeping two hours I'd feel exactly the same was when I woke up!
I sleep during the day two hours, yesterday it was three. I am so thankful that this is what I can focus on- doing what feels best for me. So many have obligations that would make focusing on yourself difficult and energy draining when there is none to spare.

I have greatly enjoyed reading Eckhart Tolle's A New Earth and following he and Oprah's podcast discussion of the book. The essesce of it is how to live in the present moment and what could be more theraputic for someone with a serious diagnosis but for all to better deal with difficulty that comes in our lives.

Love to all M

all better

2008-04-06T19:40:00.000-07:00

Last day on antibiotics yesterday and I feel soooo much better. I am not sure how a urinary track infection got in my blood,I'll talk to the Dr. about it when I see him on April 16th. My temp dissapeared three days after I started the right antibiotic, but I am continuing to monitor it daily for a while.

I walked today and did my Hutch exercises while I watched a movie. The two weeks with the infection did do a number on me- wiped me out. Now I feel much better, Still can have nice 2 hour naps during the day tho, It is a good feeling to be able to do that. Sort of care free.

This coming week is a difficult one as April 9th is the five year anniversary of the loss of our three month old grandchild, Noah Robert who was born with a very serious congenital heart defect. The Dr's didn't know how long he would live so
his parents, five year old brother and us set the goal that Noah would have the happiest babyhood we could give him. That meant it had to start with us- we had to be happy, be joyous, celebrate his being, marvel at his smile which started early and hold him incessently, oh yes, Noah spent his entire life at home. He had many friends come over,with baby gifts, flowers and food and so many desserts. Noah had a birthday party every week with cake. His grampa gave him his first taste of chocolate cake. He saw the Pacific Ocean, He heard music, admired his brothers favorite toys. Father continued on to work each day to maintain the family. Noah had to eat frequently so I did night duty so Mother could be rested in the morning. It was five years ago but it feels like now. I guess that is the mystery we don't understand. How someone can be here and then not be here when we feel ourselves and others to be forever.

love to all, M

Easter Sunday nite

2008-03-27T15:01:00.000-07:00

Everything seems to be fine now but I had to be started on antibiotics in what turned out to be a urinary tract infection that also went to my blood. So Sunday nite I had a 101 temp I went locally to get blood cultures done the next day and threw in a urinalysis on my own. anyway I was started on one broad sprectrem antibiotic to try and cover me till the final cultures were in-3days-it turned out it was not the right drug so I was switched to one that would be effective. The same bacteria in my urine was in my blood so they thing that was the source.

The hardest part of all this was it has been pounded into my head by endless medical people that you must go to the hospital immeadiatly if you find your self having a temp whitch were happening for 2 night during the hours the ferry is not running to Seattle. But my Dr. helped me by saying take your temp at bedtime, then in the morning if it is not down then call me- ferries would be running then- so I was able to go to bed and not obsess and keep taking my temp. So that felt good. In the morning it was down and the cultures were completed that day and I DIDN'T HAVE TO GO TO THE HOSPITAL.

love to all, M

good friday

2008-03-22T16:22:00.001-07:00

It was our infirmities that he bore,our sufferings that he endured while we thought of him as stricken, as one smitten by God and afflicted. But he was pierced for our offenses, crushed for our sins.

All good news, everything is negative in fact they didn't do th flow part of the bx because it wasn't indicated. The other great thing is I had the Hickman catheter in my chest taken out as I'll only have blood draws monthly that should be doable. It is an adjustment, I have lived with it since June 06. Flushing it daily, drsg changes, changeing the caps at the end weekly. You get attached to things. I was so attached it took the surgeon 45 min to be able to remove it, as he said if your don't reject it it becomes part of you. But it always functioned perfectly and considering I had blood draws most every day for 6 months on top of about 20 blood/product transfusions.oh, and the transplant which came in the form of a transfusion. The Hickman meant I didn't have any worry or a second of pain or watching my veins being distroyed and wondering if one could be found next time. I saw a patient go through that on dialysis, his last line fell out. He and those at his bedside knew what it meant- I stepped out of the room and cried.

It is hailing now. Thankyou for checking the blog, thankyou for your thoughts,concern and prayers Love to all, M

still waiting

2008-03-17T15:37:00.000-07:00

Hi all, last wed was Dr visit where I thought I'd get all the results from the bx two weeks before. Feb.25. Well the bx was free of any evidence of leukemia but another part of the test which they call the flo was still pending my Dr computer said. We talked about taking out the Hickman catheter in my chest and that a surgeon would have to do it with just a local anesthetic. So I am ready to move on this. I put in a call this morning stating the above- no word back at 4pm.

So we are going to a small St.Patrick's dinner tonight, traditions fare, it will be good to go out. I hope there is some Irish music. I feel like dancing. Actually I did some dancing today, I was sorting music Cd's and played one I had bought for our 50Th anniversary party titled wedding celebrations or something, I thought it was slow dignified music, and I never played it until today. Michael Jackson's "Billi Jean" is what got me going, turned it up plenty loud too- fun.

Love to all, M

the sun is shining!

2008-03-11T16:24:00.000-07:00

Just a few words to bring everyone up to date.
M had her biopsy on the 25th of feb. . Then a clinic visit,at Virginia Mason, on the 27th. That was too soon to have any results back from the SCCA. We go to V.M. (Virginia Mason) on the 12th, tomorrow, for a scheduled clinic visit/blood draw. Then we should have info/news.
We, M and I (Robert or Dad or caregiver) are fine. We kind of live day by day, enjoying each one fully.Things are pretty normal here. It is a fine day, like I said, the sun is shining. We go out for walks as we can, when M feels up to it. I always have something to do what with the yard and the daily "chores". Have started some peas in the greenhouse. Have spread manure on most of the garden and have it tilled.
We start ever day with pills and end every day with pills. A couple have been stopped now and M is on a taper for the rejection drug cyclosporine. At that time a couple of others stop. M takes pills to counter the effects of other pills!
All for now, we are well. Some times we get side tracked and forget family and friends who wonder how we are.
my love DAD

No news is good news

2008-03-10T21:42:00.000-07:00

Margie's not writing, so here I am again. Missed all of you and by the look of the tracking that we have on the site, you're checking in (albeit less regularly) and haven't seen any new info.

So, here I am. I'll just throw out some factoids as I think that's an easy way to convey what I know and avoid telling some long story.

- bone marrow biopsy done two weeks ago- I think around feb. 25- as of friday, she hadn't heard anything back so I of course took that as a "no news is good news" type of message.

Lord know's when there's something bad, the bearer of the news manages to contact the patient

(in this case) chop, chop.

M will be doing some blood work at the Hutch which is part of the package as she is a recipient of a transplant there and thus, willingly gives her blood (and more) for research so that other cancer patients can benefit from what the Hutch learns from her case. (So much we don't know!)

-M did mention that she had some unexplained pain in her hip that was keeping her from walking. When she'd gone in to see Doc Picozi, he'd done an x-ray (always looking for that GVHD, doncha know) but hadn't found anything to be concerned about. Since then, she'd reported that it seemed to be getting better.

- When I called about a week ago, M was about one week post biopsy which apparently was rough (as they can be) I had my dad, R on the phone and then Margie on the other line and of course, when I asked her how she was feeling, she said her usual "oh, I'm fine" and dad piped in with: "you are not, tell her you feel like crap"

Here's what popped into my mind:

-how lucky to have a spouse after 51 years that tells it straight.

-51 years! oyvey.

-glad Dad spoke up and said that, as it's good to deal with what's real, and there's nothing wrong with that, even for a stiff upper lip lassie like Margie.

-cancer sucks

But, alas, isn't everything soooooo much better than it was a year ago, 9 months ago? you get the idea. Of course, easy for me to say. I'm not the one going through all of this. But how incredibly fortunate we are that we can move on with our daily affairs, dealing with the mundane and not hyper-focused on Margie, the leukemia and the outcome of her transplant.

How blessed I feel

Love,

Kathleen

Is it still February?

2008-02-12T11:55:00.000-08:00

Enough already! Lets get the show on the road. I'm reved up but I can't move very fast. I guess right now I should let my fingers do the walking, as they say.

Dr. visit tomorrow for blood work. I now have a date for the bone marrow bx with sedation, Feb. 25th. I tried hard to get it done at the center where I spent seven months but they wanted it done in my oncologists institution- "besides, everyone wants them done here!" I told my Dr. that and he said "then why don't they do them?'" so he backed me up by saying "they do them every 10 minutes over there" whatever, I have had it done there before and it went fine.

I also have a date-appointment for my one year checkup- will last four days, it is Aug. 4th. We will get a room in Seattle for that time. I will also have to be re-vaccinated for the childhood diseases such a whooping cough, polio,etc.

My aches and pains? not much to report, thankfully, my appetite is down, sometimes I just don't feel like eating at mealtime [ never experienced that before] I am supposed to eat 70 grams of protien a day which I usually do. Oh, and 8 to 10 glasses of water. which I generally do too. The neuropathy in my feet has been giving me more trouble at night, they start to sting and it wakes me up.

We have dinner reservations for Valentines Day at a restaurant that we always enjoyed but has been closed for several years for renovation which left us without a favorite place to go close to home. The other thing about this place was that it had some atmosphere, it made you feel you were somewhere special, as a result people used it for special occassion- proms -other special occassions. What I am saying is that you could get dressed up and not feel out of place. Living in a small community you can dress casually and go anywhere. So I am on my way to try on a few dresses I have and what to go with them- fur jacket? red trench? It will be fun.

Looking forward to any comments, Love, God bless you all, M

good Dr. visit yesterday

2008-01-31T13:12:00.000-08:00

Yes, it was a good visit. My lab values are all at or very near normal. I had a rough area on my skin on my chest but the Dr. told me to put some antifungal cream on it and it did go away. They are very concerned about your skin in the post transplant period.
The graft versus host disease can manifest in one or many organs or systems of the body for an indeterment amt of time. More than one Dr. has said each day that is good make your odds of survival better. This is a good day, as I look out on our cedar forested property it is sunny and breezy with blue sky and white clouds peeking through the treetops.

Cathy is having a birthday this weekend so we're having her over. Richard, our brother is having a birthday too so I hope they can make it. I'm making carrot cake that everybody raves about and chasens chili, of chasens restaurant in Hollywood Ca. Liz and Richard Burton had it flown to rome when they were making Cleopatra. It is excellent. Green bell peppers is the secret.

I was reading my favorite and only blog this morning, Thomas Barnett.com, and he is starting another book and he shares what it is like to beat out the first 2000, 5000 words after I read that I said I can cirtainly add to my blog!
The thing about writing is you have to start writing! Really all those personal creative endevors, painting, music, sewing, writeing, reading, it almost always flows if you give it a good start and arrange things so it's handy to pick up again. Right now I know more about the presidental candidates then I've known in all the other elections put together. I need a break.

Thanks for your prayers and fathfullness Love, M

January 21- too long between

2008-01-21T13:36:00.000-08:00

Yes, too long between blogs. Three weeks. I talked to the creator of this blog Kathleen, this morning and she told me to get on it- what was the matter, didn't I have anything to say? I said sorta. So she rattled off a list of topics- Last Dr. appt, what we do when were over there, my next bx date [biopsy], my exercise program, what moveis I'm watching, whats Dad doing.

It sure is nice to have someone in your life that can shake rattle and roll you.

First I'll say I am feeling good. I continue to show no symptoms of either the Leukemia or the transplant side effects of host versus graft disease which I had a mild case of in the gut but so far the symptoms of that, vomiting has not returned after being off the prednisone now for over a month. That was my hope and goal. It was a month Jan.14.

Last Dr. appt.---We both gussie up for these every two week appt.- it's the only place we go! we take the 11:30 ferry as we live on an island, drive up the steep hills to the oncologists office, I have numerous blood samples drawn from my permanent hickman catheter in my chest and we wait for the results and see Dr. P who has been my Dr. from the beginning, I like him very much, he likes to laugh and joke around a lot. When he asked me what I was doing with my time I told him "STAYING ALIVE!", he said, YOU MEAN LIKE THE BEE GEES?" I said, YES!!!

what we do while we are over there: The hospital where the Dr. is located has a well appointed hotel in the same building open to the public or patients. The hotel has a very nice restaurant where you don't feel your in a medical setting at all. We always have a late lunch there after the appt. The food is good. You might wonder in the middle of a city why don't they try other places? Difficulty parking, hills, not a lot of energy left to do what we would normally do. It's quiet and relaxing we can hang out there as long as we want then drive down the hill and get the 4:40 ferry, home before 6'00.

My next bone marrow bx: I was notified by phone and letter that a bx is called for in my protocol at 180 days after transplant. It's in the works but I don't have a date yet. I wanted to have the conscious sedation I had at the center 4 other times but I've been discharged from there and she said the workup is too time consuming. But I could have what they call the lollipop- Fentenal-I had that once and didn't feel much pain so I said I'll take that. Your more groggy after the lollipop than the conscious sedation. That will be at the end of Jan.

Exercise- must do more, did walk 30 min today at 30 degrees.

Movies: "Marty" Ernest Borgnine, best actor, best picture 1957 and "Born Yesterday" 40's comedy with Broderick Crawford and Judy Holiday, a comedian in her own right.

What's Dad doing? Dad says he's pushing pills-my pills 12 in the morning and 10 at night in between he continues to paint and floor our room over the garage, putting up a handrail this week waiting for varnish to dry in the cold. He also said to add that he is cleaning up our two onehalf acres that has been neglected for almost two years since my diagnosis. He also does laundry, washes all the dishes, changes the sheets on the bed, does a good part of the cooking, groceries, plus the garbage/out door business. He also reads a lot of novels from the library and is reading stuff to better understand how his digital camera works.

Ok, how did I do, I know I did fine, like so many other things it's just getting started.

Love to all. Margie

Happy New Year to All

2008-01-01T16:52:00.000-08:00

Wow what a priviledge it is to be typing again on Margies computer, this has been an amazing experience, just to know she and Bob are home now, and what has taken place ever since last April, and now the goodness just keep on going, its great to write good reports and happenings, and to use this blog for good news, thats what Margie is all about, she is looking fabulous, and feels much better, Her energy level is alot better from my stand point, and just seeing her and her attitude and presence is so full of life.

Status of Margies Groin: margie says she is afraid she left you hanging on the groin business it is well.

What a suprise we had the night before Christmas Eve, when all through the house creatures were definatlly moving about. What happen was... Are you ready?? Well were at Rod and Colleens house and opening some Christmas gifts, They and Carol and Michael handed us an minilla envelope and were looking at us with expectation looking at us being thrilled,so when I pulled the two sheets out of the envelope each had a photo with two people I had never seen before. I did not have my glasses on so i couldn't even read the explanation at the top of the page, and the cameras was flashing to capture the great moment of excitment for us but I had no idea what the excitment was all about. It turns out our kids found two paintings done by my grandfather done in 1924, found on ebay . Now I got very excited! It was unbelievable that these could be foound Margie

Santa Claus

2007-12-26T11:20:00.000-08:00

Most people have seen this before but it is so good it is worth hearing again, it was in our paper this morning and it made my day. First printed in the New York Times, 1897.

"Nobody sees Santa Claus but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see...there is a veil covering the unseen world which not the strongest man, not even the united strength of all the strongest men that ever lived, could tear apart.

Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernatural beauty and glory beyond. Is it all real? Ah, Virginia, in all the world there is nothing else real and abiding."

So from George F. Handel, in 1743:

Joy to the world! the Lord has come, Let earth receive her King; Let ev'ry heart---prepare Him room- and Heaven and nature sing---and heaven and nature sing, and heaven and nature sing"

We spent Christmas Even here at home with Cathy, she brought a fine crock pot dinner after work. We listened to Christmas music and remembered our grandmother Eve who was born on Christmas eve. Our parents moved her to Hawaii with them on her 100th birthday. There she was interviewed by the local newspaper- she could still participate in something like that.

She told them that as a child in England, her family didn't pay much attention to her on her birthday so she pretended she was having tea with the Queen. What a different generation of children, or that's how you develop the Scottish stiff upper lip.

On the health front I have been off the prednisone 14 days which was preventing vomiting. (I hate to even write that word) which is a symptom of the most common development following a related bone marrow transplant. So far, no problem. I'm going to my original oncologist every two weeks for blood work, so far everything is good on that. They are scheduling me for another bone marrow bx in Feb. If that is clear then not again till July or Aug. Meanwhile I feel good, weak but my immunosuppresants will start to be decreased in a few weeks and that's supposed to be impacting my muscle strength a lot.

For some wierd reason I got a pulled muscle in my groin a month ago. It was very painful and put a stop to my walking outside, I've never has that before and have been told it can be a stubborn thing that's hard to heal- it doesn't just go away.

I know my stamina is getting better, it is just so slow.

A very merry Christmas and happy new year to all of you and yours.

At about this time in 2006 I didn't know if I should buy a 2007 calendar, but here it is soon to be 2008, a lesson in what a waste of energy and time and emotions in fretting about the future.

Love to all, Margie

2007-12-26T11:17:00.000-08:00

Every time you hear a bell ring an angle gets its wings

2007-12-08T16:25:00.000-08:00

My bells are ringing, and if you can't see my wings rest assured I'm flying high in the sky above cloud nine. I am doing great as the doner during this wonderful Christmas season. After the transplant took place, I felt a little weak for about a week and a half. But i recuperated beautifully, I think my wonderful story is Margies wonderful story, Its just sooo enmeshed now. I'm so incredibly happy she is doing so well it makes me smile so brightly just for her, The beauty of answered prayers, and her faith and trust in God, is so inspiring Her attitude through all of this has been the best, It should teach us all so much about hope and happiness and a full wonderful life that she deserves and she just lives it to the fullest,

So i am again happily sitting at the old wood round oak table so full of joy this Christmas season having my sweet sister and Bob back home again, i have come over a few times and the joy on their faces,of being home is so jubilant. You almost have to watch it like a Movie to see what happens next, so there is Bob sitting in his chair reading his book munching on some home made granola,Margie cleaning out closets, getting ready for Christmas and yes she has a sweet little fake tree that's so pretty, What ever she doesn't have she makes it happen,I just love it.

Well i just want to take this opportunity to tell you my life is getting very wonderful, I believe i made a comment about e-harmony, a like six months ago, during this time i had been writing this guy i really was not to interested in, mainly cause he was in Montana, safe enough distance right? Not. Hes been here to see me three times and he will come Christmas day and spend a week here, He is the kindest person I've ever met, and is teaching me all about real love, acceptance,communication like Ive never known, we still e-mail and text each other all day and talk every night about relationships the past so we can look forward to the future having a healthy relationship and to top it all off his favorite movie is a Wonderful Life, So we always talk about life, Anyway kinda funny how Margie and i both have a wonderful life, Fell free to comment on this blog especially this time of year and To see how everyone is doing would be fabulous, Love you all and May God Bless each and everyone. Cathy

Home sweet home.

2007-11-30T12:22:00.000-08:00

That was a happy surprise to turn this on and see you had blogged this morning Kathleen.
First off I do feel well, the weakness and tiredness is just always there but I'm no longer sleeping during the day like I did most days at the apt.

so measuring progress is a subtle thing. Neither do I sit around as much, everywhere I look I want to clean out,streamline, reasses the need for this or that. so I'm mostly productive all day. I guess I have a pulled muscle in my groin, thats what the Dr. says, but it has really cut down on my walking outside on distance and it's been like two weeks now. Then at pt she had me balence on something that is round on the bottom, forty five minutes of that and the next day I could barely walk at all. The pt thought I did everything fine, and I did, but I look better than I am at least as far as my muscles go, and it was too much, to fast. I'll tell her that next visit. She was also encouraging me to think outside of the box, like what sports did I used to play? well, dodge ball, basketball, kickball ( in the 9th grade I'm thinking) oh, and tennis. That would be perfect! (she's striving to improve my balence) I think I will strive for being able to resume some distance walking first.

For the record, I am doing 45min of 2# wt lifting and 30 min of exersize on a ball 4to 5 days/wk

Thanks for reading the blog and reading your comments is fun. Thankyou for your caring, concern and prayers. Love, M

So far, the snooze for which we are hoping...

2007-11-29T16:23:00.000-08:00

Feel very pleased indeed that there is not much to report.
Spoke with Robert today. Their week shakes out like this: doctors visit with oncologist once a week, blood draw, talk with doctor about any changes, or problems, lunch.
Physical therapy, where progress is checked and new excersizes are assigned is also weekly. Staying indoors is pretty much a priority and away from people and their germs. (I know I've covered this adnaseum)
I know dad is thrilled to be back home- they were gone for seven months and not only did he miss being outdoors on the property, but the maintainance can get behind, so he's been busy doing clean up.

Margie and Robert can't have a tree in the house for Christmas this year, so of course that's dissapointing for Margie. I suggested a photograph of a tree sitting where the tree would normally be displayed. No?
Any other suggestions would be appreciated- feel free to share.
Love, Kathleen

Margie's wonderful life, now.

2007-11-14T16:42:00.000-08:00

Well, just getting used to living in her own house again is fairly big at this point.
I spoke with Margie this morning and she told me about how here schedule would be now, what she has to spend her time doing and what the concerns are now.
Remember, it's not over till it's over?

This week so far she had an appointment with her Oncologist who now takes over her case since she's "dismissed", so to speak from the Hutch. The next day she had an appointment with her Physical therapist who thankfully is on the island.
Dr. Picozzi explained that right now and for the next 6 months to 9 months she is at her most critical. This means that her body is more vulnerable to infection and although Cathy's immune system is "in place", it is still battling within Margies' body and that's why the anti-rejection drugs, imunosuppressants, gvhd drugs, prednizone, etc.

From the first year anniversary post transplant to the 2nd year post transplant (next july 08 is one year post transplant)
that is when her vulnerability BEGINS to drop. So, you now are likely to understand my last post a wee bit better, as in Margie is so not out of the woods and we have to be as careful as ever. A lot of it for Margie is common sense: handwashing, staying away from groups of people and especially people that are in any way sick, were sick, going to be sick, thinking about going to be sick or just hung out with someone that was. You get the picture. She gets to go to the movies (she loves the movies) but only during off hours when there are like, 6 people there. She can't have a bunch of people in her house, invading her germ free environment. She and we must all be very careful, aware and thoughtful of her surrounds and exposure.

Ok, back to her routine:
Her appointment with her oncologist will be once a week as well as a once a week physical therapy. Besides that, her job is to get her body recovered from the hell it's been through and is still going through by doing 2 to 3 hours of physical therapy everyday, six days a week, including walking and using 2 pound weights on her ankles and wrists.
She can't go to the gym (we all know how moist and germy they are) Can't garden, touch trees and have any exposure to flora and fauna.

She'll be spending lots of time in her house, so she's busy writing a list of her daily routine (see above) as breakfast, p.t. and just stuff around the house is going to fill her day. She'll be able to spend time on the computer, something that she has wanted to do for a long time, read books, write, cook, and focus on her own health, what with the above as well as the condition that the last year has put her in, including but not limited to an onset of osteoperosis and neuropathy in her hands and feet/legs. During the last couple of months, another melanoma was found, so she'll have to undergo another surgery for that and I'm sure that's on her mind as it's not the best idea to let it go.

I hope I've given everyone some useful information as to what's happening now and although in the big picture she's an A student, she's still got a long, long way to go.

Love, Kathleen

It's not over till it's over...

2007-11-12T11:40:00.000-08:00

what???

Yes, Margie and Robert have moved home. NO, the party hasn't started. She is not out of the woods on this one folks and is still in a very compromised position with her immune system and the various drugs she's on to keep problems at bay.

Please don't make plans for a visit as you'll be introducing the germs and bacteria of yourself and others into Margie's environment and that's just not going to work at this time.

She's got to lay low, stay out of circulation and generally stay in a very protected environment.

Thanks,
Kathleen

100% Cathy

2007-11-06T16:45:00.000-08:00

Isn't that what we all want? Let me explain. Margie's team of doctors explained this week that her immune system has been 100% replaced with Cathys immune sytem. Science fiction or just magic? Luckily, very real and happening right in front of us.
Not only has her immune system been replaced, she's experiencing things that are evidence of the changes: Margies had a chronic allergic coughing for many years now... gone. Margie has always had thin, cracking finger nails: gone. I'm sure the list will get longer. This is truly amazing, no?

More big news: This sunday? DAY 100! I know you are as astounded as I am. Margie and Robert will be moving completely back to their home this thursday or friday and the relationship with the Hutchinson center will end and will pick up with Margies oncologist, Dr. Picozi.

This not to say that Margie is finished with this, but on paper, she's looking really great. Among the common sense stuff that she has to practice once she's home (hand washing, steering clear of sick people, etc) she also can't touch trees, any flora and fauna essentially. Not an easy task at their house. It is Washington afterall and with all that rain, things just grow.
She'll continue to take the wheel barrel full of drugs that she's been on since the transplant and the prednazone and get regular blood draws and check ups.
The next big milestone is one year post transplant. That is when, after she makes that, the Hutch team considers it a successful transplant.
You Go Girl!

Love, Kathleen

day 87

2007-10-28T17:34:00.000-07:00

I am back on prednizone due to the symtoms of the gvh disease reappeared in my gut after just five days off of it so they put me back on 30mg daily and are decreasinging gradually until Dec. 13th.

They have mostly completed the discharge testing, dental exam, lumbar puncture with a 4th dose of chemo,last bone marrow bx for a year they say, a photo session for my skin to compare, a skin bx, blood cultures 2x per week, that was my last week. chest xray. I have physical therapy weekly with printouts of excerises to to everyday. They are simple, or I would have called them simple before but they don't feel that was now, Prednizone causes a lot of muscle atrophy and this is to counter that.

We give up the flat on Nov 10th. So we will be home after that. We are home as I write, we have been bringing things back over here gradually. I took way too much stuf. Have'nt been interestested in using it. I know I am going to be weeding out a lot of stuff once were back.

It will be a big transitition moving home, we have been gone 7 months. and it is a big security blanket being minites from the medical center than responds immeadiatly if you call with a concern or question. Love to all Thankyou once again for all you love, thoughts and prayers, I am so blessed. M

Post Transplant day 70!

2007-10-12T20:02:00.000-07:00

Wow!
seventy days! Of course, from where I sit that sounds like it's gone by quickly. Of course, I'm not the one with leukemia.
So, more good and bad:
last weekend Margie and Robert were able to get the weekend off and go back to the island. The report was that they felt relaxed after a couple of days of naps and relaxing. Sounds like just the ticket. Colleen and Rod were back from seeing Alyssa in Colorado and came back with colds, so they couldn't visit with Margie, but probubly just as well as she needed to just nap the weekend away...

In the not so great category, she's vomited a couple of times in the last 24 hours so instead of going to the island for the weekend today, they're at the Hutch to likely get an infusion of some type and maybe a readjustment of meds. Prednazone may be back on the menu. So, I'll report as I get some new info on this change.

Margie's walking approximately a mile a day which is great as her body has taken such a toll with this cancer and treatment, her muscles are essentially re-learning their movement. The p.t has also told her to only increase weights by one pound at a time (she started with a one pound weight a week ago, to illustrate how she is starting at square one as it were)

All in all, Margie is looking good in the big picture, but her incremental steps are small, so I know that it takes everything to keep the resolve and determination. If anyone can do it, Margie can.

Love,
kathleen

"It's getting better all the time..." -the beatles

2007-10-05T09:54:00.000-07:00

Day 63!
Just posting a list of bits and bobs (again) based on my conversation with Margie yesterday. I usually jot everything down as we talk but it so happens that I was on my cell phone outside, so this'll all be from memory.

-The prednazone dose is down to 5 mgs, from 50 at the beginning.
-She's not experiencing the daily vomiting, thanks to her team diagnosing the GVHD and treating it!
-Margie and Robert don't have to go in daily for her infusions of magnesium and potasium, she can now take a supplement and also supplement with her food where she can.
-That means that at the Hutch, she'll still be going in for blood work as they still have to keep her monitored . Also for physical therapy, meetings with the nutritionists, her doctors and team. Overall though, She and Robert are experiencing a little less time at the Hutch and may also get to experience a weekend "off"
-She's trying to get out for daily walks

All I can remember for now.
Love,
Kathleen

WENT SHOPPING!

2007-09-29T17:03:00.000-07:00

yes, I went shopping for some clothes for fall that fit and was that ever fun, what I was picking from was right by the dressing room and I could just go in and out and pick different sizes or match different things. I was a little nervous about having Robert there because we never go together on this kind of shopping.I really didn't think he would want to wait for me as long as it usually takes me to try things on, But it worked out great, he sat on the provided bench near the changing rooms and watched me come and go as I did my thing. I could hear a group of women who were shopping together but mostly helping one in the group who at middle age had right then discovered that the petite size fit her and she never knew about it. They were really carrying on and even got a petite sign to take her picture with, I heard her say I feel like I have been on "what not to wear" Any way they included Robert in all of this and it certainly made it a more interesting wait for him. He told them who I was when I come out. Anyway, it is always so thrilling to actually fit into a smaller size and to feel great.

Our day is run by the weekly schedule issued to us each Friday of when to be at the SCCA and for what tests or infusions, there has not been a day without that since the transplant. Monday I have another bone marrow bx, lab,infusion- Tues, chest ex ray,physical therapy, nutrition and infusion, all this can take most of the day. So far I have not has return sym of coming off the prednizone,in another 5 days I won't be taking any. Eating is better but still limited, I like dried apricots but I can't taste them. The nutritionist helps a lot telling me where I need to head it light of the wasting that the medications can do to negate nutrition.

Thank for the post today Kathleen, you saved me some words so I could talk about something fun. Love to all, M

Day 57 Post Transplant

2007-09-29T08:38:00.000-07:00

Another list of bits and bobs, in no particular order:
-last tuesday had another lumbar puncture- these will be every two weeks and also found out that during the puncture, a wee bit of chemo is injected as well. (the spine is seperate from the systems of the body, so they have to treat it differently)

-Margies prednazone dosage is going from 55mgs daily down to about 30 and then will be tapered off to zero.

-physical therapy: "I needed it more than I realized" Margie has to work on simple excersizes like raising and lowering from a chair. She is walking again, trying to walk daily. Thursday for about an hour, and has to work on the "assigned" excersises daily as well. The prednazone has a detrimental effect on the musculature of the body, so it's doubly important that she stay active.

-meeting with doctors on tuesday and they reported that they were "thrilled" with her progress thus far.

-she's still working with a nutritionist on the food/pill taking challenges and feels like she's making a little progress, especially since she finally stopped vomiting with the help of the prednazone and the GVHD meds (which she will stay on for the time being)

-Margie was happy to report that her weight is where it should be. As the petite flower that she is, of course it's always a negative when the weight creeps up, even if it is a side effect of something (besides eating too much) So, I know she feels really good about being at her ideal weight.

That's it for this week, I'll post again in the next couple of days.

Love, Kathleen

Transplant Day Pictures

2007-09-22T18:51:00.001-07:00

These pictures are of Cathy and her brother Richard

Cranial Radiation

2007-09-22T18:37:00.000-07:00

full body radiation

2007-09-22T18:34:00.001-07:00

Day 50 post Transplant!

2007-09-22T18:28:00.000-07:00

Thank you Cathy for commenting today- I'm so glad you're up there with Margie and Robert. (for those of you reading this, Cathy happens to be a really fun person to be around. We laugh a lot)

I'm just writing to say that I'm going to post some photographs that Robert mailed me: I think they are self explanatory, but I have to break them up a little due to each posting only holding 4 to 5 pictures.
Theres full body radiation where she's standing, the cranial radiation on the table and transplant day. If you remember, the radiation all came before transplant day.

I thought these were fascinating photographs as they really put an image to what you've all been following faithfully.

Today is the half way point for Margie. Say a toast for her tonight over your milk or water, or wine or juice or whatever and have a wonderful and blessed Yom Kippur

Love,
Kathleen

Ready for my close up!

2007-09-19T10:54:00.000-07:00

Day 47 today and Margie had an itty-bitty, teeny-weeny camera sent down to her stomach on monday- She was not awake for the procedure and woke up feeling fine and a bit sore, but overall no worse for wear.
Yes, the results are back, she does have a "mild" case of graft vs. host disease and it is being treated now by strong doses of prednazone (anti-inflamatory) a drug which can be hard on the body, so thankfully they'll taper her off in a week or so. Also taking Beclometh, which is the drug treatment specifically for the GVHD. (graft versus host disease)

In the category of cookey-but-true: Beclometh, the treatment drug that she's taking to combat the GVHD. Like most drugs would normally affect other parts of the body, and as we know Margies issue right now is with her stomach/vomiting. So, they (the medical team) explained that if she takes it with oil (corn oil, it has the least amount of taste) the oil keeps the meds isolated to the stomach, and they won't be absorbed by the rest of the body. Zany.

While Margie is taking this, she'll be monitored more regularly with regard to her heart/blood etc. so that any negative effects can be quickly dealt with (keep in mind, she's still on many other drugs for the transplant) She took her first doses yesterday (tuesday) then the second this morning. (once a day) She said she already felt a little better, although she still vomited once each day.

She did have a check up with the dermatologist today: Margie has a propensity toward skin cancer (as all of you and I moley Szabo kin do- go get checked by a dermatologist! Now.) and she had something suspicious looking taken off of her nose/nostril area. The doc thinks that it's a basil cell carcinoma, which is the kind that a person wants: it just gets removed and then that's the end of it)
So, the little bugger has to get biopsied and if she needs to have it "dug out" as they do (where they have to cut out a larger portion of area surrounding the site) then she'll have to have a plastic surgeon at it again on her face. (For those of you unaware, Margie had a melanoma taken off her face a few years ago) Nothing like having something to take her mind off of Leukemia for a while- Jeesh!

In the bits and bobs category:
-Jeanni G's birthday is this sunday the 23rd and Sullivan P on the 27- Happy birthday to you both!
-My father in law, Herb is having open heart surgery today: please keep him in your prayers.

Love to you all- will post more Margie news in the next day or two...
Oh, I almost forgot: Asked her today how she felt on the transplant-o-meter scale of 1 to 100. Last time was 25. She says she feels like a fourty!! That's great progress!
Kathleen

Day 42 post transplant

2007-09-14T17:15:00.000-07:00

Ok, so here's the rundown of follow-up from some of the tests that I reported on and updated information what's still around the corner.

-the lumbar puncture came back good: no L cells
-had a cranial MRI so that the team could determine if there was any brain damage from all the chemo. (now's a fine time to think about THAT) I digress. Her brain looks good.

-Saw the nutritionist this week- all was fine and got new ideas about eating and managing her eating. Margie says she's been eating a little more and figuring out what to eat.
-Margie and Roberts time at the Hutch is some days down to a bit over an hour, sometimes more, but overall, much better now since they don't have to do the regular infusions to the tune of 4-5 hours a day.

On the flip side of all that lovelyness, the vomiting is still not going away. She'd been down to about one a day and then this week there were days when it was two or three times.
What's being determined now is that they are suspecting that she has graft versus host disease because as they put it, "she should be feeling better by now" The next step then is to see a team of gastrointerologists and they'll do a procedure where they run a tube down her and determine graft v. host in which case they will then use medication to combat it.

The fatigue, vomiting and feeling like crap have just gone past the expiration date for what should be happening, so her team has to now figure out why she still feels this way.

Before I hung up with her this morning, she said she's "feeling a little better but it's so incremental that it's hard to tell"

Ugh. We all so want you to be feeling better soon!
Love, Kathleen

Day 38 post transplant

2007-09-10T15:44:00.000-07:00

Lots of bits and bobs to report today, based on my conversation yesterday:

- magnesium/potasium infusions have been shortened to one hour a day, and supplemented by oral doses. Wow!

-Friday spent a long day at the Hutch: froom about noon till about 10pm due to Margie needing blood product. Her hematacrit was down as well as hemaglobin.

-Lumbar puncture scheduled for tuesday this week to find out if there are any L cells in the spinal fluid

-Still feeling like a "20" on a scale from 1 to 100.

- having one regular throw up a day, usually after breakfast (I can see your thought bubble: yuck. ) that's life folks.

-visits scheduled with the nutritionist this week as well as the physical therapist.

The upside to all of that is that Margie and Robert have a little more "time" due to her getting progressively better. It's obviously a slow road, but seems like she's taking small steps (literally and figuratively) toward getting better all of the time.

Bravo, Margie!

Handsome married man seeks dinner out with beautiful married lady

2007-09-05T21:39:00.000-07:00

You read it here first! Robert and Margie went out to dinner on tuesday night at the Outback restaurant!!! Wow!
Call the media!

It's day 34 post transplant- dinner out last night:
Him: pork chops
Her: Surf and Turf of skewered prawns and a filet.
Them: sitting close to the door to make sure they had a quick exit if her dinner wanted to make it's own "exit" as it were. (smart thinking) Margie did say that dinner still tasted "weird".

I asked Margie how she was feeling, based on my very sophisticated technical scale of 1 to 100. As you may recall she last felt like she was a 3.
Tonight, a 20! Things are looking up!
Was it the company of her debonair dinner companion or that she's slowly being taken off of the heavy hitting immunosupressants???
Who cares!?

Also in the great news department, they've been able to cut her daily infusion back to about a half. Or, instead of 4 hour infusions, now they're 2 hours. That can make a big difference when this is such a full time job of getting up EVERY DAY OF THE WEEK and going to the hutch so that the medical staff can screw a hose into your chest and infuse!

So, big parties should be planned for September 22. Why, you ask? Because that's day 50 post transplant: That's half way to
day 100, which is the big day cause that's when Margie and Robert say adios to the Hutch (and I wouldn't be at all surprised if they just booked a flight to Italy) So, we're nearly half way to the mark!
Mark your calendars! Saturday, september 22! Day 50! Be there!

Love,
Kathleen

Transplant day 30

2007-09-01T11:01:00.000-07:00

Biggest news to report this week is that Margie's first Biopsy post transplant has come back clear of leukemia cells!
There are two phases of the results and both showed no sign of the cells, so that leaves us with a scheduled lumbar puncture next week which will tell us if there are any L cells present in the spinal fluid. So far, so good!

-yesterday she walked around the block
-hasn't thrown up since yesterday (but she points out that "the day isn't over, yet")

Had physical therapy this week and was given some sitting and standing excersises to do- this'll be a nice diversion and a goal for showing the therapist some progress next week.

I asked her if she was feeling better: a little bit.
Then I asked Margie "on a scale of 1 to 100, and 100 feeling back to yourself, what number would you say you're at?"
her answer: "3"

Ouch.

-----------------------------------------------------------------------------------------------

In other news,
My brother Edward had his birthday last saturday and my apologies as I wasn't able to call and wish him a happy birthday-
Randy had to go in for emergency gallbladder surgery and have it removed! He's fine now and recovering well.
But day and week got changed pretty dramatically as we had to re-group for him being at home this week. (and ME doing all of the cooking!! Something I haven't done in quite some time, as Randy is the chef in our house. Thank you to our good friend Mary F. for bringing by a grocery bag filled with prepared food! Saved my bacon for a couple of nights- I am eternally grateful! So, I've been away from the blog all week and haven't checked in as often as I like to do.

Cathy is back from Mexico and I hope you had a wonderful trip: thank you for posting from your travels. It sounds as though it was a terrific adventure!

-----------------------------------------------------------------------------------------------

Only 70 more days to go for Margie to get the umbilical cord cut that is connected to her and the Hutch. She's done great these last 30 days, and I hope that her progress continues and that she feels better than a 3 as soon as possible!

Love to all,
Kathleen

patches

2007-08-25T18:17:00.000-07:00

Hi all,

I'm waiting for the day when I can say like James Brown,"I feel GOOD...." But I do feel better. I now wear a patch behind my ear for the stomach issues and although not 100% yet it is a big improvement. It makes me feel good that I'm medicated 24/7 for it, it is changed every 3 days.

The energy increases so incrementally that it is hardly noticed. I just know I am doing this instead of lying down.

The Dr. ordered physical therapy (p.t) for me next week. At least it will be something different. I started doing some exercises in bed to get ready for p.t. (mom, isn't that like cleaning the house before the housekeeper comes?)

The Brownies were here while we were at the SCCA- {Debbie and Michael} That is what our mother called it when any surprise cleaning might go on, !! THE BROWNIES WERE HERE!!SHE WOULD EXCLAIME!!! It always made us feel good, Lots of love and Thank you for your prayers. M.

"Everything is good, but I feel awful"

2007-08-22T17:38:00.001-07:00

Those are Margies words this afternoon.

I was reminded by Lara this week to post what transplant day we are on. Thank you Lara:
Today is transplant day 21

Margie was told today that she is "solidly engrafted" Which is of course all fantastic, it's just too bad she feels so lousy.
I asked her how they know this little tid-bit about the engraftment, and here's what she said:

The "ANC" numbers which are part of the white blood cell numbers. They look for hers to be at about 500 and hers are currently at 2000. This makes for a strong immune system. The platelet numbers are in a normal range and the other blood numbers are all strong.
Unfortunately, she is "past the time that she should be feeling better" This is likely caused by the fact of the problems with the food and the pill intake- she still gets sick a lot and she's not taking in enough protein. I know I don't have to re-explain all the food/pill/vommit issues and we all know what a vicious cycle food/nausea can be.
She met with the nutritionist to try to further explore how to get more protein in her, but I'm sure it's very frustrating due to the fact that she just doesn't want it and the inevitable "reaction" she gets. Who would?

But, Margie's spirits are up as always, she's just waiting and hoping she'll feel "just 25% better" as she says.

Hopefully, that 25% and more is just around the corner.

Love, Kathleen

Sometimes the bad with the good

2007-08-20T13:12:00.000-07:00

A recap of my conversation with Margie sunday night:

- reducing her daily blood draws to 3 times per week.

-still getting her daily four hour infusion of magnesium that is dramatically lost due to imunosupressants

-friday, I think I reported, Margie felt a bit better after a horrible week.

-saturday, she felt much worse again- Fatigue, vomiting, feels like her mind is "unclear"

-sunday, a little better again

-very hard to orchestrate the food and pill intake-feels sick when she does, has to force fluids and
vomits more than she'd like after food- also has to herself determine(she says "sort through") if any whole pills have come up and re-take. (you can conjure up your own image here)

Hey, you got through the big D and the rash, so you can get through the visuals on this one too!

-Speaking of the big D, has had none which is fantastic news because D is one of the first signs of graft vs. host disease

-pushing fluids

- she also said sunday morning she had a peach with breakfast that was "delicious" Although she vomited it up 2 hours later, I take that as a good sign that she even used the word "delicious". She hasn't used that word for any food in a few months.

All in all, like I titled this post, sometimes the bad comes with the good, but she's got her eye and her heart and her mind on the big picture. And after all, the big picture, or in this case, Margie's wonderful life, is what we're concerned about.

Love to you Mom,
Kathleen

It is all in the larger mystery of God why one is to survive and one is to not.

2007-08-17T16:50:00.000-07:00

If you think I am referring to myself as a survivor it is only in the sense of I have gotton as far as I have. There are more hurtles to overcome and to cope with in this disease and of course thay tell you you may or may not get any of them. Why one person survives and another does not come in the catagory of derservability, by virtue of our creation all persons have that as birthright- an innalliable right to life

Kathleen, you keep writing such neat stuff! Sometimes after I read it I want to blog, but I have just reviewed all this and I have to take another nap!

Happily CATHY will soon be going on a lovely vacation, and what a well deservered rest she has earned after everything you read below. And this was no walk in the park for her. It was only after Richard sail he would come and be with her for the duration that any of us gave any thought of her possible needs. So he chauffeured her when needed plus provided a nice motel room for her comfort. Plus Jeanni and Greg and sons came to be with her.

We are completly thrilled with all the good news of the last 48hrs! Nothing bad in the bloodstream, fastest ingraft going a a gangbusters rate and expects complete engraftment in a few days!!!! All the DR's words I am not guilding the lily here.

In addition I am feeling better, walking easier,less feeling of exhustion the eating is better but far from anything normal.

Love to ALLLLLLLLLLLLLLLLLLLLLLLLLLLLLL M.

"Gangbusters"

2007-08-17T12:04:00.000-07:00

Wow!
Four fantastic things Margie was told yesterday at her meeting with doctors on the blue team:

" the engraftment is going like gangbusters!"

"we've never seen an engraftment this fast in a mini transplant"

"the latest blood work done for leukemia cells came up zero"

"we expect the engraftment to be complete in the next two days"

Holy guacamole! I don't know who to be more impressed with. Margie for having the super human strength to get through this last year plus and who's body is so healthy and smart it knows to receive or Cathy for having the Mother Theresa of stem cells to take over Margie's immune system and beat that leukemias butt. (of course, that was all highly technical medical terminology)

I spoke with Margie on the phone this morning and I've got to say, her voice sounds better. They're figuring out a better drug combination so she's not sick so much and that's gotta help a lot. Every day is a little bit better.

I hope she or Cathy blog soon so that either of them can express her own feelings about this wonderful development.

Have a great weekend,
Kathleen

Maybe in a week?

2007-08-13T20:54:00.000-07:00

Sometimes, fair reader, it is very hard, dare I say taxing to write things about Margie that are negative, her progress slow, and not necessarily what you or I really want to read. But alas, I aim to write reality and sometimes reality is not the nicest thing to read and not always the pleasant, upbeat posts that we might all like to find before us. (a prime example would be Margie's previous rash, wouldn't it?)

I'll just recap my conversation with her this evening. As she and I have discussed many times, she wants this blog to be about what IS. This is what's happening now and the reality of it is, cancer sucks. So, here we go:

The doctors tell her she's sleeping too much which is caused by the anti nausea medication, which she takes because of the immunosuppressants that cause her to feel nausea. So as a medication adjustment, they're cutting back on the immunosuprressant, cutting back on the anti nausea meds and she should be able to not sleep so much.

She feels miserable and weak. I must say that for Margie to actually say this means that she is feeling about 100 times worse than what she is saying, as she is not one to complain. But, the medical staff reasures her that she is "feeling day 12", and this is normal (which of course is great) Margie did have someone finally throw her a bone today and told her that she may start feeling better in a week or so-finally a little light!

The medical staff told her to eat more protein and drink more, but very hard to do right now because it's hard for her to be interested in any food at all. All of it and even the thought of it makes her sick. Coordinating the medication and eating are a "real pain" as she says.

She's being told she needs to walk more, which is hard as well because she has pain just standing up. So, she's trying to walk to and from the front door of the apartment and then again later in the day.

She'll likely have her next bone marrow biopsy in the next week or two, I'll keep you posted on any new information there.

Greg's father stopped by to meet Margie yesterday. Dr. George Sales and Margie have spoken many times since her diagnosis and it turns out he is just as lovely in person as he is on the phone.

Overall, what to take from this is that she's where she's supposed to be right now. Unfortunately, she feels horrible and has for some time so it's not been easy to stay up-beat. I'm hoping that she'll begin to feel better as soon as possible and just that small amount will give her encouragement I'm sure.

Thanks for staying with it. It's hard to keep reading and watching, I know. Please keep commenting, I know Margie really appreciates everyone taking a moment to comment on the blog

Love Kathleen

think Peter O'Toole in Laurence of Arabia

2007-08-11T19:53:00.000-07:00

yes, visualize a vast desert, only thoughts of hope are sustaining you through the parched, barron land. You pick up your hand from the desert floor and put your hand up to your mouth and taste the sand. Desperately, trying to swallow the only source of food, barely able to take a step, legs seizing up and losing the ability to function. They move now, only with pain. The sun burns the top of your head and you rip the cloth away, knowing that relief could be, may be, over the horizon. But how many days will it take? How long?

Cut to Seattle. Yep, there's Margie's life right now. The tediousness of all of this is enough to make me go berzerk, and to hear Margie say "The doctors are happy. I feel like crap, and that's exactly where I'm supposed to be" Well, that say's a lot for someone who typically can manage most anything with a positive word.

So a quick overview and I'll get to the GOOD STUFF.

Eating: Big issue as EVERYTHING makes her nauseaus. Looking at it, smelling it, swallowing it, chewing it. You get the picture.
On top of that, taking all those pills! Yes, more swallowing. More nausea. So, huge undertaking many times a day and not a pleasant experience.
Standing up, she immediately feels pain in her legs and so the walking has been very difficult to even do. A hundred steps around the apartment is a goal she tries to accomplish.
Plenty of fatigue, don't need to go into that.

Lots of good news: She hasn't had any temperature, organ failure so no check-ins to the hospital: All Good

Now the GOOD STUFF:
The nurse told her today that her numbers are beginning to show increases: That is a good sign because it can be a sign that the transplant is taking!!!! Way to take over an immune system Cathy! Way to go Margie!!

So, we continue to wait, hope and watch. I don't know about you , but I sit here in total awe of this episode of the most fascinating science fiction ( and yet, completely real life) that I've ever witnessed. What about you?

It's a no news is good news thing

2007-08-08T08:16:00.000-07:00

Just like I said in a previous post, we're hoping that this blog will become a real snooze of non-activity of the medical kind and evolve into some kind of joke-fest site or something. Or maybe photos of kittens...

So, back to Margie: The blue team met up yesterday and the report is in that she's right where she should be at day 7.
She and Robert had a very late day yesterday, arriving back at the apartment around 8 pm, so by the time I spoke with them they sounded thoroughly exhausted.

So, it's all good, her numbers are as low as their supposed to be, her immune system is non-existant, her energy is sapped and as Margie put it: "Feeling this bad is exactly where I'm supposed to be."

In the next couple of weeks, the team will begin to look for her numbers to begin to climb up again, albeit slowly as we experienced with the last round of chemo.

Only spoke for a few minutes last night- they still had to change her dressing/take the meds/get ready for bed, so I didn't want to keep them up for chit-chat.
Will report back when I get more details...

Love, Kathleen

"Red Man" and more from the front line of transplant

2007-08-04T09:36:00.000-07:00

After speaking with Margie and Robert a couple of times over the last 2 days, I've decided to compile a list of quotes to serve as "snap shots" of what they're doing/experiencing right now. These are in no particular order but serve well as a peek into the inner workings of this s.o.b. of a cancer.

Margie: "Hi, dad (Robert) just got back with another wheelbarrel full of pills from the pharmacy"

Dr. Storb: "Immune system transplant (the mini that Margie just had) is much harder on the body than a transplant of any major organ because it affects the entire body. (blood)"

Margie:" I'm taking two drugs for imunosuppressant, two times a day, one to protect the liver, protection from fungus, which affects the lungs, virus protection drugs, herpes protection drugs, one to protect against hanson's disease (popularly known as leprosy), anti diarreal, anti nausea, and the all purpose, anything that ails ya' drug, Atavan.
I take one drug that causes one side effect, then have to take another one to counter those side effects, then something else to counter the side effects of that drug"

Margie: "Dad says real love is cutting your spouses toenails" (which he was doing at the time)

Robert: "today was a blood draw and after that an infusion of magnesium and about three other things they mix in. She got "red man", so they'll have to slow down her drip to about 4 hours. The imunosuppressant drugs are draining the magnesium out of her and nothing she eats or supplements can replace it quickly enough"

(red man is when the body is overwhelmed by the speed of an infusion or drip into her central line (right above her heart), so, starting with her head, her body literally turns red as a reaction to being overwhelmed by the amount of intake. I witnessed this when I was up there, it's very apparant, very quickly.)

Cathy: "I still feel like crud. Still some nausea, really tired. Luckily Rachel and Cora are coming over and bringing food, so that will help, and I'll get some rest"

Nutritionist: "Margies doing outstanding" with her nutrition

Dr. Storb: "Cathy gave enough cells for two transplants and we gave them all to Margie" (way to go Cathy!)

Dr. Ernster: (my sons' pediatrician who knows Margie) "She's got a wonderful attitude and spirit- that's going to make all the difference. Give her a hug for me and send my best next time you talk"

All for now dears. Last year on August 14, Robert spent his birthday waiting while Margie got a bone marrow biopsy, so this year I hope we skip the biopsy and go right to the birthday cake! Happy birthday to both of you this year (Margie/july 30) that you're past the transplant and onto the next "phase" of this.

And today, Happy Birthday Colleen D.!

Love, Kathleen

And now we wait...

2007-08-01T10:27:00.001-07:00

In other words, the transplant is done!

I reported on monday that everything was moving right along albeit a bit rocky for Cathy as she has some reactions and side effects that would then repeat themselves on tuesday during her "part two" of the blood draw.
Each days draw took about 3 to 4 hours and has been reported that on monday, they retrieved 38 million stem cells and on tuesday, 50 million. I am told that the doctors were "thrilled" and all those millions went into Margie on tuesday.

So, after Cathy finished up at the hutch she was able to go back to her hotel with Jeanni (Jeanni and Greg and boys came up to help Cathy- a perfectly timed visit, as it turns out what with Cathy's condition at this point) So, with Jeanni and Richard in place for Cathy, our story continues...

So, on Margies end, tuesday started with her everyday blood draw at the hutch then onto the full body radiation which lasted approximately 45 minutes . She said it wasn't too hard because they actually wanted her to be moving around on the table, so they played rock and roll and Margie got to do as much groovin to the music as she felt inclined.

After that, she went to go to Cathy's bedside, who was still in the middle of her draw. Deborah, Mike, Richard, Jeanni and Robert were there and to play a joke on all of them, Margie came into the room dragging one of her legs like it had been wiped out by the radiation. Just like Margie to want to have some fun!

So, after all that, Margie and Robert got a little rest at the apartment then onto the University Hospital where the transplant was scheduled to start in the afternoon. When I spoke with Mike at around 5pm, the hospital was running late, still getting her room ready, etc. Finally, the stem cell infusion started around 9:30pm and lasted 5 hours. This is done very slowly as to not overwhelm the body.

I spoke with Margie this morning . She'd finally gotten to sleep around 2am, and had just finished eating breakfast which included a small arsenal of drugs.
With Cathy's stem cells now finally in place, what happens is that these two individual immune systems would be inclined to fight it out- so now Margie takes heavy hitter imunosuppressants to keep both immune systems down. Then slowly, the drugs begin to get tapered off. (This takes months) This won't begin to happen for two months. So for now, her immune system is at it's most fragile, as I eluded to in previous posts.

The first 100 days is the first milestone. During this time, she'll be getting her daily blood draws and taking a lot of drugs that are specific to suppressing the immune system (s) and anti rejection meds. (last report was that she's taking about 35 pills daily)
Also during this time she'll be watched very closely for signs of infection, drug caused side effects, and host vs. graft disease.

So, assuming that she sails on by all of the above, hopefully this blog will become a real snoozer.

After one year, that's typically when they'll know if Cathy's immune system has taken over Margies. So, then the happy ending will be that Margie has a whole new immune system, courtesy of Cathy!

Keep those thoughts and prayers coming- this 'aint over! (but all in all, Margie's doing great!)

Love, Kathleen

Happy Birthday, Margie!

2007-07-30T22:16:00.000-07:00

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

2007-07-29T13:42:00.000-07:00

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

2007-07-29T00:47:00.000-07:00

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

2007-07-27T13:11:00.000-07:00

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.

-------------------------------------------------------------------------------------------------------

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 !!

2007-07-25T13:06:00.000-07:00

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...

2007-07-24T13:31:00.000-07:00

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

2007-07-21T16:09:00.000-07:00

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 !!

2007-07-20T08:59:00.000-07:00

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...

2007-07-13T11:05:00.000-07:00

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...

2007-07-06T15:44:00.000-07:00

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

2007-07-01T17:27:00.000-07:00

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

Fogs in...

2007-06-29T13:27:00.000-07:00

I can see the thought bubble above your head: "huh?"
This title has nothing to do with Margie, other than the fact that she loves San Francisco, and I live here, and the fogs in...
It's the last two days of June and the fog is thick as soup. Brrrr. Come september and October: glorious.
Yes, I know you've read this a hundred times, but the oft quoted Mark Twain said it best:
"The coldest winter I ever spent, was a summer in San Francisco" He couldn't be more right.

Back to Margie-
She's still in a bit of a holding pattern due to her numbers not yet being up, but still moving on with yet more new procedures:
Next week she starts 12 days (not including weekends) of cranial/spinal radiation. We talked about radiation for a few minutes, and as all electricity, even a light bulb emits some amount of radiation, I likened it to harnessing a lightening bolt (if you want to think about the comparisons, light bulbs, microwave ovens,etc) So, this goes on each of the twelve days for a few minutes.
And that is to further eradicate the leukemia cells from her brain and spine.

Last bone marrow biopsy results haven't come back completely yet, as the cells are too immature, so still waiting for more conclusive information. She's got another biopsy scheduled tentatively- (the blood numbers have to be higher) and after that, maybe get that ol' transplant scheduled again.

Day to day, she's at the Hutch to get her blood drawn and info on where the numbers are, sometimes receiving product. Today going in this afternoon just for that reason.

She's up to about 12 city blocks walking daily again and trying to add more length to get stronger. As her numbers climb, so will the strength in her body.

All for now. Margie tells me she's sent along in the mail a few "jottings" that I can transcribe to the blog, so you can look forward to her words instead of mine. Will post them as soon as they arrive.

Love, Kathleen

More waiting...

2007-06-25T12:09:00.000-07:00

Margie and Robert are back at the apartment as she waits for her numbers to continue coming up.
This is a process, as it's slow and she won't be in "pre-transplant" status until her numbers are up to where they need to be.
Tuesday (tomorrow) she's tentatively scheduled for a bone marrow biopsy, and then another tentative proceedure of
cranial and spinal raditation once the numbers are up.

So, as of sunday, Margies white cells wer up to 300, the nutriphyl (spelling?) is at 120 and she's still going in daily for platelet transfusions. The platelets won't replenish themselves without the white cells also climbing so she has to be supported with platelets during this waiting time.

I've mentioned before that you and I walk around with over 100k of platelets and she gets down to about 9 thousand regulary.
Several times now in the last few days since being back to the apartment, when she's gone into get her transfusion, she has to go in by wheelchair because there's just nothing left.

Margie's doing well with the protein intake and is taking in a required 70 plus grams a day. She said that food is tasting better and it's not quite an issue eating as it was with the mouth sores. Her weight at the hospital went up due to the edema and all the drugs and fluids, but now she's on about 5 different drugs a day, the edema's gone and the extra weights gone, so as we know, spirits are up if the weights down! (I was telling Cathy recently that it's amazing what a difference five pounds can make on us "petite flowers")

She's getting better sleep at the apartment as one might imagine and is only waking a couple times during the night. I sure hear it in her voice- she sounds rested and clear again.
Not possible to get in the miles that she was at the hospital pre and during chemo. Now that she's got very little blood product in her, she can barely get to the hospital bed to get her platelet transfusions, so the marathons will have to wait for now.

All for now, dears-
Kathleen

There's no place like... the apartment

2007-06-20T13:26:00.000-07:00

That's right, Margie's checking out of the hospital this afternoon- back to the apartment and onto being a
Pre-Transplant patient!!!
Her white counts are still creeping up, and yesterday's bone marrow biopsy preliminary results have come back good,
so she and Robert are busy packing their bags and back to the apartment where Margie will hopefully get a full nights sleep!

Then, back to the Hutch tomorrow!

Way to go Margie!

Love, Kathleen

My Beautiful Mother

2007-06-18T17:05:00.000-07:00

My Beautiful Mother

2007-06-18T17:01:00.000-07:00

Well, the photos are in folks, and Leukemia and the side effects of drugs are pretty gnarly.
Margie wants me to put these on the blog, so I am. All I can say is, my mother is the most beautiful woman I've ever known in my life...and these pictures show her grace.

Love, Kathleen

summa time, and the livin' is eee-zee...

2007-06-18T12:34:00.000-07:00

I am taking my second ever commercial airplane ride in July to Washington to see my family. My granddaughter is going to escort me up there and back home, and she has extra bonus air miles, so we get to fly first class. I think I'm looking forward to it. Will let you know how it goes.

Love to Margie and Bob. They're in my prayers.

Lorraine P

------------------------------------------Hi Kate!
I just got myself caught up on the blog. I am sooooo thrilled that the
Leukemia is gone!
Although it sound as though it's been a terribly difficult road to this
point, she is getting to where she needs to be. That is great!!!

Hi Margie,

Our summer plans look something like this... Dylan (who is now 5 1/2 if you
can believe it!) finished preschool at the JCC on Thursday. They had a
lovely little "moving on" ceremony, just like they did with Parker's class,
I'm sure, and Dylan was full of pride when he received his "diploma". So he
is technically on vacation at this very moment. I, however, am not! I am too
busy trying to appease Ben, who is 8 1/2, and obsessed and deeply perturbed
by the fact that he still has two more days of school left before summer
vacation begins! He, much to his chagrin and dismay, is not "free" until
Tuesday at 2pm (at which time I officially begin my latest trial by fire; 10
weeks straight with my children! Terrifying but I'm sure I'm up for the
challenge!

Recently Kate and I were talking about how she and her brothers and sister
were shipped off to relatives for weeks at a time during the summers when
she was a kid. Now I can see why! Where do we sign up? Just kidding... I am
actually looking forward to the little adventures I have planned for the
boys and myself this summer.

We are spending the remainder of June at home with few concrete plans. My
first cousin and his wife and kids are coming for a visit. Ben will do a
little 2-hour-per-day tennis camp in Golden Gate Park for one week. Most
notably, however, is the fact that in less than two weeks I will be
celebrating my 40th birthday! I don't know whether to cry or rejoice so I'm
doing both! Planning a b-day bash for myself with the help of my dear
friends, contemplating Botox and the hiring of a male escort to attend my
party with me (just kidding) and concocting subtle and not so subtle ways to
tell my family what I'd like for my birthday! After all, I've got to milk it
for all it's worth! My mom, dad, and step-mom will be making their ways West
to celebrate with me. I am so thrilled that they are coming! Kate doesn't
actually believe I have parents since she's never met them yet. This will be
my chance to prove they really exist!

In July we will be in NYC and the surrounding countryside for three weeks
visiting my family. We will move back and forth between my mom's tiny-tiny
apartment on the Upper West Side of Manhattan and my dad's little country
house in Saugerties, NY. In NYC we will see friends, play with my little
nieces in the playgrounds where my sister and I played as children, and eat
pizza and soft ice cream from the Mr. Softy trucks parked throughout the
city. In the country we will swim in the creek surrounding the house, hike,
torture insects, get dirty and generally do "boy-style" country activities.
I'm still learning what those activites are, but you get my drift.

In August we go to Yosemite for 1 week. There is a family camp there called
Camp Mather, and this will be our third trip up there. We stay in a
bare-bones cabin with nothing but a light bulb and two beds. The great thing
is that I don't have to cook for the whole week! The food is served
cafeteria style, and it is really tasty! There is a beautiful lake for
swimming, a pool, tennis courts, great hiking, horseback riding and plenty
of camp-like activities. At night they do marshmallow roasts, sing-alongs
etc. Lots and lots of fun. Oh, and the kids ride their bikes everywhere
which they love.

Once we get back we have two weeks at home before school begins again. We
will just lay low, relax and enjoy sleeping in for a few more days until
school starts.

Sounds like a great summer right? I certainly hope the boys enjoy it. I am
trying to treasure my time with them... They seem to be growing up sooo
fast!

Margie, I want you to know that I think about you every day. I am sending
you all my love and good wishes and strength and hope for your continued
recovery. You are amazing!!!! I am so inspired by your strength and grace
and beauty!

Love,
Lara
-----------------------------------------------------------
Hi, this is RachelAs of today i am waiting for russ to get home within six days and we might go to abbys wedding this summer.
take care, rachel.

------------------------------------------------------------

kathleen,
Well, we are celebrating Sarah'sgraduation from college this weekend. Way to go Sarah! There is also the 4th of July where Michelle & I will be dressed as Raggedy Ann & Andy (those happen to be our two middle names by the way) and with my accordion, will be marching in our annual 4th of July neighborhood parade. Also, with Hilary making the cheerleading squad, she'll be having practices two days a week this summer, which includes tumbling workouts. Jeff has moved back home after a year of being out in the real world (reality check $$). He just completed his 1st year at the local community college and is working full time at Rite-Aid this summer. Where will I be? Oh yeah, I'll be working. I do look forward to the weekends when I can play my accordion and entertain the patrons at Nonna Emilia's Ristorante Italiano. I am taking one week of in late July and maybe go to the beach and do a little camping, just to get away and relax.
Well, that's about it. Nothing too exciting. I wish I could say I was touring Europe this summer, but I guess I can pretend that I am in Italy on weekends while playing "That's Amore'.

Love You.
-Joe
-------------------------------------------------------------

Richard and I will probably be working all summer, but we are going out to
Ocean shores here on the Washington Coast for 5 days when he gets home from
the ship he is on now. It's our 20th anniversary June 14th so it's an
anniversary trip. He may stay in town and work for Arrow Launch for the
summer. I'm hoping we get to take a trip to Victoria sometime this summer
also. My niece and her family will be coming to visit us from Catalina in
July for about 5 days too. I'm excited to see them! OH YES!! And the best
news of all...Jade and Luke are expecting a baby in January! We should have
a full summer!

Take care now!

Debbi

------------------------------------------------------------

Randy and the boys and I will be doing our annual trip to Mexico in July-
besides that, Parker has science camp for two weeks, Randy goes to San Diego for
a friends retirement party and then in August, I'll be coming up there with the boys.
Love,
Kathleen

-------------------------------------------------------------

So, thank you everyone that contributed, I know that Margie loves to hear about what everyone is doing-

Happy Fathers Day!

2007-06-17T13:07:00.000-07:00

Happy father's day to all of you dads out there-

But, this site is about Margie.
Onward:

As of this morning, her white blood cells are at 200. ( those dang whites are not moving particulary speedy, are they?) However, Margie has a bone marrow biopsy scheduled for tuesday and she was hoping that she'd have the p.a. at the university hospital that does a really great job, so... wish granted!

Had a pretty good nights sleep last nite: she said she got a rare 4 hour stretch, so good for her!

Carol, Mike, Deborah and Robert were over yesterday for about an hour, and sounds like she really enjoyed their visit- Carol, Mike and Deborah went on to do a little bit of tooling around Seattle and sounds like they had a nice day.

Congratulations on her graduation today, Sarah! And to Joe and Michelle !

Will begin our "summer plans" post later today, if you've still yet to add to our list, ( and you know who you are) feel free to email me- kers@att.net

Love, Kathleen

The white blood cells are coming!

2007-06-14T13:37:00.000-07:00

Yesterday, on day 26 ( from her start of chemo) when I spoke with Margie, she had yet to start producing white blood cells and I learned that a person cannot get an infusion of white's like you can with reds or platelets. So, here she was at day 26 post chemo and had not replaced any of the wiped out white blood cells ( white are the ones that are key to the immune system- if you don't have them, you don't leave the hospital)
You or I walk around with about 3500 white blood cells.
She has to have 500 to leave the hospital and with this mornings blood draw, she's at 100. Way to go!

Other than that, a few bullet points on things that are happening:
- her rash is still present, tho she feels it's on its way out. Getting itchy-er tho- Taking benedryl for it to relieve some of the itch.
She decribed the look of the rash as Measels times 3. Ewww. Robert is sending me a c.d. with pictures, so I'll be posting them likely on the weekend.

-Mouth sores still present and continuing with a smoothy a day- otherwise she's on solids and the Big D is gone- Thank the big G!

-Next tuesday will be another bone marrow biopsy

-She's on one antibiotic now, down from 2

-Doesn't have a fever

-Sleep is still a huge challenge- only 1 to 2 hours at a time, what with her condition and the constant monitoring, there's medical personell in and out of her room virtually round the clock. She's figured out that by taking a "late" breakfast tray, she can sleep from about 6 to 9 , a three hour stretch which is now the longest she gets to sleep.

That's what I've got for an update for now. The key bit here being that her white blood cells have come up to 100!!

Way to go Margie! You're the bomb! (I know that that's a good thing, although I'm not sure what it means!)

Love, Kathleen

p.s. IT'S NOT TO LATE TO EMAIL ME YOUR SUMMER PLANS-
KERS@ATT.NET
THANK YOU TO ALL OF YOU THAT HAVE EMAILED ME ALREADY!

waiting, waiting

2007-06-09T11:11:00.000-07:00

This mornings report: Overall, good.
Assorted information in no particular order-

-Margie's numbers still haven't come up: she said they "went into retreat" after the chemo, which is apparantly normal, but in the meantime, she's supported by blood infusions and the p.a. says that they should start seeing the numbers come up in the next couple of days.

-She has a rash all over her chest, face and shoulders, luckily not itchy, due to a side effect of the two antibiotics she's on.
Of course, rashes always tend to be a bit of a mystery and then one has to do some detective work to correct the problem, so they are going to change her antibiotics today and hopefully see an improvement.

-She has a bit of swelling at the site of her hickman which the p.a. says is part of the rash, but Margie noted that it did not come with the rash, so we shall see.

-Eating and sleeping are some big issues right now. Thinking about, looking at and faced with the task of eating makes her naseated. She's occasionally trying a med to offset this side effect, but overall the appetite is shot. The mouth sores are less of an issue.

-Sleeping: This is harsh- only about 1 to 2 hours at a time. So, as a sample, last night:
9 to 10 pm, sleep, up till 1. sleep from 1-3, up. Sleep from 4-5. Up. Sleep from 7-9. Up.
Those little blocks of 1 to 2 are hard and she's up and down constantly, what with the interruptions of the medical staff, obviously neccessary. So, she's getting the sleep anywhere she can.
She commented to me this week that she is the most exhausted this week than any other time during this hospital stay.
So, no visitors due to her immune system being compromised but sounds like a good thing so that any time alone she can try and sleep.

-Trying to clock 1 to 2 miles a day around the nurses station, so that's good and it's what her body has to have

-She discovered a smoothy type concoction that he kitchen makes that has 19g. protein and most importantly is cold, which seems to help to get it down and not so nauseating to drink.

So, there's the latest report: All in all, positive. Margies slugging it out and is just the tough cookie to get through-

Love,
Kathleen

p.s. THANK YOU to those of you that have emailed me with their summer plans (see previous post for more info if you missed it) It's not too late, email me at KERS@ATT.NET and let me know what you and yours are going to be doing over the summer and I'll compile them on the blog for Margie. She'll love to read about what her friends and family are doing!

THE BEST NEWS!!!

2007-06-05T17:23:00.000-07:00

Great news!
Yesterday's bone marrow biopsy has come back CLEAR!!.
Just spoke with Margie and Robert and she sounds really great- her voice sounds strong, rested and ready for a transplant.

Once her numbers (red blood, white blood, platelet, and hematacrit) come back up to the numbers that she needs to leave the U, then she'll be back at the Hutch so with a new protocol as a Pre-Transplant patient!

Way to go mom!!!

She's clocking about 2 miles a day around the nurses station and reported that yesterday she lost virtually all of her hair whilst she was showering- good thing she's got that wardrobe of hair to put on the nut!

What wonderful news! I practically ran to the computer to share this with her family and friends!

ok, I lied

2007-06-01T12:02:00.000-07:00

I said I wouldn't be posting, and here I am. five minutes later. I know.

I noticed the date on the blog: June 1st! Around these parts and by that I mean in our house, that marks a big occassion because it's the beginning of the summer season and the count down for our summer trip.

I WOULD LOVE IT, AND SO WOULD MARGIE

if anyone reading this blog would email me with what they're plans (them, their family etc) are for the summer.
Vacation, a trip? camp? nothing? school? a special adventure? visiting friends? RV trip, where?

Email me at

kers@att.net

and I'll compile and share FOR MARGIE on the blog. I KNOW SHE'D LOVE TO READ ABOUT WHAT EVERYONE IS DOING!

so do it.
Now.

baa baa black sheep, have you any wool?

2007-06-01T11:10:00.000-07:00

Yes sir, yes sir, six bags full...

Ok, I'm the mother of a toddler and that's a line from a nursery rhyme.

Well, Margie's got SIX (or more) i.v. bags hanging and hooked up to her right now. Dad! take a picture of that one!

I don't have a lot of the particulars but we know she's hooked up to potassium, vancomyacyn, blood product and various and sundry fluids.

Here's a report of pretty much miscellaneous of the past couple of days, in no particular order:
-on and off Big D, though much improved (yay!)
-plenty of fluid output due to the lasix to relieve the edema (sometimes too much as she's in the head all night!)
-the dreaded mouth sores. Eating activity starts with medication for her mouth so that she can swallow anything with less pain.
-some heart irregularities so they are watching her on and off with a cardiac monitor
-watching lung activity: since she had a problem a few days ago. 2 litres of Oxygen (according to my notes-don't know when)
-has tested positive for grand positive cockxy ( I don't know what that is, nor can I spell it!) but it's a bacteria. sounds creepy
-nausea when faced with eating/food activity (sounds like food is pretty much a nightmare right now)
-getting all blood product right now due to her numbers being expectedly down from the chemo.
-In three days she'll get a biopsy: this'll be a big one to determine remission
-told Cathy this morning that all these symtoms could get worse/more in the next few days.

two steps forward....one step back.

Her numbers are bottomed out right now, so no visitors. Besides dad, can't risk introducing some germ into her environment.

Big kudos Margie: She is literally doing circles around the nurses on the floor. By that I mean that she walks circles around the nurses station every day, yesterday reporting that she clocked a mile and a half!! One of the nurses told her what a great job she's doing with the walking and staying active. the nurse said they have to sometimes "drag patients asses out of bed"
to get them moving, it's SOOOO vital to recovery. Our bodies have to MOVE!

Way to go Marathon Mom!
Margie has an incredibly, powerfully positive outlook and attitude. She know that without a doubt this is the way through this to the otherside and onto the next part of her life. It's a real honor to be able to listen to her on the phone and I'm so struck by all that stuff of which she's made! Pure Grace.

I've got an art show this weekend in which I'll be selling ALL of the paintings that I'll have there (actively practicing the power of positive thinking, lest you think I'm that self absorbed!) , so I'll be off the posting for a couple of days unless there's something that needs to be reported. Maybe Cathy or Margie will blog...

Shameless self promotion section:
you can see my work at : http://www.katesalenfriend.com

Have a wonderful weekend and especially Margie,
Love
Kathleen

p.s. I've been typing up some poetry for Parker's 3rd grade class this week for an end of year project and one of the girls poems was just beautiful. There was one particular line in which the imagery just took my breath away. Her name is Laura:

"My heart is knowing
How to dream of
Dancing roses"

last night, this morning

2007-05-29T10:58:00.000-07:00

must report on my phone conversation from last night with Margie since there was much positive, and then I'll bring you up to speed on this morning:
Her day yesterday was much better: The D seems to be slowing down, she was finally given Lasix to combat the edema and speculated that she'd gotten rid of about 1500 cc's. Yay!
she was still in the temperature zone and still on vancomyocin (spelling?) her diet still (last 3-4 days) has been clear:
red jello and chicken broth. She's gotten some mouth sores, but doesn't feel like she's too bothered by them.
So, all in all a better day.

So, this mornings report:
Last night heart irregularities so they did an ekg and then turned out that she her heart "calmed" down without any intervention. They started her on an oral med as a preventative and now she's on a cardiac monitor.
No more D last night, luckily since she had her "swat team" in the room tending to her heart.
Temp is finally down to 37c.

Margie's enjoying the staff at the U hospital, she's been writing short stories which I will transcribe here at some point.

So, yesterday's post included Haiku, which I realize now that not everyone may be aware of what it is.
Well, if you know, skip this section.
Haiku is a poetic form and a type of poetry from the Japanese culture. Haiku (pronounced High-koo) combines form, content, and language in a meaningful, yet compact form. The most common form for Haiku is three short lines. The first line containing 5 syllables, the second line 7 syllables and the third line containing 5 syllables. Haiku doesn't rhyme. A Haiku must "paint" a mental image in the readers mind. This is the challenge of Haiku- to put the poem's meaning and imagery in the reader's mind in only 17 syllables over just three lines of poetry.

So in that spirit, here's a couple I wrote for Margie:

My all day menu,
A culinary delight.
Jello, chicken broth.

-----------------

To the hospital:
Cards, photos and well wishes.
Mail lost forever.

------------------

Love, Kathleen

and it goes on...

2007-05-27T21:17:00.000-07:00

the diarrhea that is.
Yep, I can see your thought bubbles over your heads, "why is she writing this? too much information!"
but hey, folks this is reality and I guess I'm just callin em' as I see em' as they say.

So, more of the D word last night, a slow down today and then when I just talked to her nurse, tonight, it's (D) is back again.
She's just not getting a break on this one.
She got a unit of red blood cells today as well as platelets and also is still running a fever. So it goes on.

She's toughing it out and hopefully getting some sleep in between all of this all-nighter action in the john.

Am going to post the most hilarious email that my wonderful friend Lara sent to me today.
It's of Jewish Haiku.
I know my mom and dad will get a good laugh from reading this when they tune in...
Thank you Lara for brightening my afternoon!
------------------------------------------------------------------------------------------------
Jewish Haiku

Lacking fins or tail
The gefilte fish swim with
Great difficulty.

-----------------

beyond valium,
Peace is knowing one's child
Is an internist.

___________________

On Passover we
Opened the door for Elijah
Now our cat is gone.

____________________

After the warm rain
The sweet smell of camellias
Did you wipe your feet?

____________________

Her lips near my ear,
Aunt Sadie whispers the name
Of her friend's disease.

___________________

Today I am a man.
Tomorrow I will return
To the seventh grade.

------------------

Testing the warm milk
On her wrist, she sighs softly.
But her son is forty.

-------------------

The sparkling blue sea
Reminds me to wait an hour
After my sandwich.

--------------------

Like a bonsai tree,
Is your terrible posture
At my dinner table.

--------------------

Jews on Safari---
Map, compass, elephant gun,
Hard sucking candies.

--------------------

The same kimono
The top geishas are wearing:
I got it at Loehmann's.

--------------------

Mom, please! There is no
Need to put that dinner roll
In your pocketbook.

--------------------

Seven-foot Jews in
The NBA slam-dunking!
My alarm clock rings.

--------------------

Sorry I'm not home
To take your call. At the tone
Please state your bad news.

----------------------

Is one Nobel Prize
So much to ask from a child
After all I've done?

-----------------------

Today, mild shvitzing.
Tomorrow, so hot you'll plotz.
Five-day forecast: feh

---------------------

Yenta. Shmeer. Gevalt.
Shlemiel. Shlimazl. Meshuganah.
Oy! To be fluent!

--------------------

Quietly murmered
At Saturday Synagogue services,
Yanks 5, Red Sox 3.

---------------------

A lovely nose ring,
Excuse me while I put my
Head in the oven.

--------------------

Hard to tell under the lights.
White Yarmulke or
Male- pattern baldness.

----------------------

Love, Kathleen

can you say "Atelectisis"?

2007-05-26T08:57:00.000-07:00

Atelectisis is when a section of the lung collapses. So, yesterday in the wee hours Margie had this side effect from the chemo and was able to bounce back through the day.
So far, she's had the diarrhea, the lung side effect, just developing mouth sores. Of course we're hoping that this will be the worst of it. Of course her numbers are dropping as they do after chemo, so she's getting blood product to support her.

What a trooper, she's committed to walking as much as she can as it's vital that she keeps moving and doesn't get atrophied from all the bed time. So when I spoke with her yesterday, even in all of the exhaustion she says," well, I'm getting an i.v., and then I'm going to walk for a while, I only walked for six minutes this morning."

Funny story:
Throughout Margie's leukemia, she and I have had some sort of telekenetic connection similar to "twin-syndrome" type stuff, that is to say, the first time was early on in her illness, first thing in the morning at the hospital, she went in for her first bone marrow biopsy, which ended up being very painful for her. I didn't know that this was happening, but at the same time, I was in my house, taking a shower and started getting sharp stabbing pains in my lower back and hip! When I spoke with her later, she told me about the biospy and the pain and it was happening at the same time as the pain in the shower.

Another time, she was getting her lumbar puncture (this happened twice) where it was a difficult/painful procedure and her I was down in San Francisco getting my usual pains. ( I didn' t know the procedure was happening at the time, lest you find these coincidences suspect!)

So then yesterday she told me about her having her atelectisis side effects and the breathing difficulities. I told her that I'd woken up from a vivid dream early in the morning about being somewhere with some people and the leader was telling us about swimming through an underground cave to get to the other side and during the whole dream, I was filled with anxiety about breathing and holding my breath as we were told that we'd have to hold our breath to survive to the other side and that I'd have to be able to hold my breath for about a minute and a half. It was one of those dreams where I woke up exhausted from all of the stress and physical nature of the dream. So I told Margie about my dream, and she of course
was blown away by the connection as I was and then she says: " but what about the diarrhea??"
(luckily, THAT I did not get!) Thank you.

This would not be complete of course if I did not report on dad. I spoke with Robert after he'd gone back to the apartment and he'd just finished dinner and was going to be heading off to bed soon. He sounded, all things considered, pretty good.
We certainly need to keep tabs on his health/emotional and phychological as anyone in his position can pretty much turn into a train wreck at any time. He says he's getting some sleep at night and eating right, was planning on going into the hospital "late" this morning (8am) Hmmm.

All for now, will update more through the weekend as well as the big bash Randy and I are going to-
Love, Kathleen

Yeah!!! Post Chemo!!! An All Nighter, Yikes!!!

2007-05-24T13:36:00.000-07:00

Anyone know how to spell diahrrea? Is this the correct spelling? Or is it a four letter word? Just imagine the worst you've ever had, Its a hundred times worst. So pray.

The nurses have to gown up to dump the urine in my bathroom. I was in the bathroom literally all night my eyes were burning with the toxins coming out of me, but all is well. Dr. Geoges came in this afternoon and said I don't have any bowel damage, I have no abdominal pain which is a good thing. Tested my potassium it was a little low, but overall, I'm doing well.

Had lunch today and salad which Cathy ate and soup which Bob ate. I had some chesse which tasted like wall paper paste, and (my taste buds arnt in tack right now) but i ended up having crackers with it and did ok. They broght me some high nutritional clear drinks and had lots of nutrition, so I'm gradually getting back into the eating thing.

Randy and Kathleen are going to Grace Cathedral to a wedding and the reception will be at the Mark Hopkins Hotel, and will dance the night away as a former ballroom dance instuctor I'm sure they will be the life of the party. Cant you just imagine the dancing with the finest orchrasta?!!!

Kathleen and Randy please blog us of this great experience the both of you, both perspectives. Please send pictures on the blog, this is a happy moment we want to know about, I love happy moments.

Thank you everyone for reading the blog, I love you all, Love M

Receiving Equals Gratitude

2007-05-21T15:42:00.000-07:00

5-17-07

This is my focus,this is how I deal with any thoughts of doubts or fears.I am writting about all that I am receiving.

1. I am being cared for in the finest medical facility in the world.

2. I am receiving the most caring and professional nursing care there is or ever has been.

3. my team of physicians care about me and have the most vast body of knowledge on my condition and are free to utilize whatever available for my best interest.

4. Even though the ph of my urine is measured.

5.I have access to any and all information I want.

6. My professionals sit down and talk to me for as long as I desire.

7. I am receiving the best treatment for luekemia and was told of a woman just like me who was in my same situation that just flew home to Florida!

8. I am receiving the greatest and most love and support from my husband,children and all of my family. All 100% of them.

Saturday, May 19

All That I am receiving Today

1. I received my healing Chemo today.

2. I feel whole and am receiving Gods grace to be aware to celebrate and to wonder.

3. I received today laughter from a fun nurse.

4. I received my loved ones my husband, my children who are making as many
contributions they can make, and my eight brothers and sisters who are praying their hearts out for me.

5. I received the presence and person of my parents as I retold Dads love of the Sea on the blog.

6. I received the thrill of feeling strong physically as I lifted weights, and walked for an hour, I received the gift of feeling good.

7. I received confidence, trust, and love from my medical team, my loved ones and from Jesus.

8. From the (first) - grandson, on todays blog.We laughed at every single one out loud, thank you Dashell.

I Want to Discribe How it Will Be to Be Healed

I will be so greatful to be healed. It will be like driving through the Redwoods at night in a little rain and fog with the Mormon Tabernacle Chior singing, Ava Maria, The First Noel, Joy to the World, in full volume...us sitting side by side having this thrilling experience.

I Now Want to Discribe What it Would be like to be Healed from Chemo

It feels like cool waters quenching out a small fire some of the hiss and puffs of smoke...side effects are expected but soon pass as a action-reaction. The cool waters continue to put out any and all embers and any and all remnents of sparks...gone...gone for good.

We can settle back to sleep in out tents knowing we are safe and secure snugglying close, knowing that even though we feel small outside here in nature,in Gods huge universe, looking at the stars~we are all precious, protected and loved by God.

May 21,

Today at 1:00pm I started my third day of four days of Chemo.This Chemo is the strongest I've been ever given, and so far I haven't had any ill effects.Because my organs have been so healty I've been given this Chemo, otherwise I would not be able to take it.

Walked forty minutes with Cathy, We critiqued the hallways with both of us having worked in hospitals we were shutting drawers left open, and moving things into place, reporting spills to the staff, doing our best to keep staff, patients and visitors safe.

Thank you for all your love,support and prayers, Love,Margie

Margie has been writting, this the past few days, and I helped her write this on the computer for her. Bob took a day off today did laundry and cleaned house, He said he was going to vaccumme. We shall see! Love to everyone.Oh yes it was great to spend the day with Margie she laughed and laughed at what you wrote Dashell.Love Cathy

I've gotta be the heavy...

2007-05-20T11:23:00.000-07:00

Ok, so I've got to be the heavy:

There has to be a 6pm cut off for phone calls to Margie. The calls go on to long and get her wired and what with
the hospital staff in and out of her room, she's not getting sleep that she has to have.

So, if you feel the need to talk with her, please call before 6pm.

or, write a comment on this blog and then she'll know you're thinking about her and she can read at her leisure.

Thanks!

Kathleen

allow celebrate and wonder

2007-05-18T16:00:00.000-07:00

At first I was going to title this wieghts and walking with faith. The weights and walking part represents everything I have tried to do to make my body strong and tap into any and all resourses I may have amassed, accumulated over the course of my life that I can now draw on to take the necessary assult to overcome the leukemia. One sourse of strength for me is the time I spent far out on the pacific ocean with my Dad.

Sometimes he would say as if it was the most wonderful thing: WE ARE HALFWAY TO HAWAII!!!! Like, think of the people who would like to be where we are! Out in the middle of the pacific ocean unhampered by any land, sunrises and sunsets like no one has ever seen, the wind helping us along the huge waves that do the same. The vast expanses of Gods magnificent creation..... and THE FISH WE COULD EAT!!That was when he was really in heaven. To catch, skin and slice up a beautiful just out of the ocean albacore was the absolule epitome of living. And It didn't matter to him that we were on a thirty five foot boat with tanks of gasoline stored on the deck, and carrying say, fifty gallons of fresh water at the most. He was reveling in showing and shareing what he believed was the most wonderful experience there was and with no fear. I honestly believe that didn't exsist for him, like who would do this if they believed it was risky??

The first year we went down in mexican waters ort of San Diego I was 12 my brother Kenny was 7. This was commerical fishing in the fifties. We went off mexico illigally as it cost too much to get the required papers to fish there. So there were times we had to be on the lookout for the mexican patrol boats but they generally didn't go as far out to sea as we did, 200 to 400 miles out, thats where the fish were.

Kenny and I would take turns standing watch and steering the boat by hand. It was important to steer in a stright line, to steer the course the captain has set for where he thought the fish were. Everytime he saw a snakeiing wake he would come and see how far one of us was off cours and for every 5 degrees of the compass we were off we would have to add 15 minutes to our turn on watch. I was worse than Kenny, Kenny just did his time but I has lots more, finally Dad tied the wheel down with like a bungee cord so we couldn't turn the wheel hardly at all.

ALLOW CELLIBRATE AND WONDER OUR DAD DID THAT.

Well I'm signing off for tonite, I just got my laptop setup here my room, So Lots of Love to all, thankyou for all of your love, concern, prayers and good wishes.Love M.

one facsinating tid bit after another

2007-05-18T12:00:00.000-07:00

Called the hospital just now and Margie and Robert were doing "laps" around the floor. She has to clock a minimum of 5,000 steps a day as not to get atrophied.
Yesterday I learned a facsinating bit about Leukemia cells which underlines how little we know about cancer:
Leukemia cells make their own cholesterol. (sneaky little bugger that it is) and that cholesterol has the ability to block chemotherapy. So that the chemotherapy can penetrate the L cell, Margie is taking what amounts to about 16 times the normal dosage of cholesterol lowering drug (sorry, don't know name) and that drug disarms the L cell and takes away some of its defense. Interesting or what?

So here's a run down of the factoids (of course they change all the time, so I am accountable for nothing)

-10 days of this cholesterol lowering drug (began on thursday)

-on day 3 of the 10 she'll start 4 days of chemo/24 hour drip through her central line (that's the hickman catheter in her chest)

-after the 10 days and her numbers come back up, she'll then undergo spinal and cranial radiation

-she's been warned that this chemo dose is much more aggressive than her original induction so there are likely to be side-effects (no body goes through this with nothing, right?)

-yesterday had to get infusion of blood product because her platelets numbers and hematacrit numbers were dropping. Which essentially means that the Leukemia is becoming "active"

From what I understand of the nurses and staff at the University hospital, they are fantastic. I just spoke with one of them briefly and she seemed to already know so much about Margie and Robert, and expressed such a warm level of care and enthusiasm for her, it sure makes me feel assured and confident.

Love to you all,
Kathleen

Two Steps Forward, One Step Back

2007-05-16T13:30:00.000-07:00

Update on Margie: She's at the University Hospital now and will be for a bit as she's now been checked in to start another induction of chemotherapy. As I reported last night, the "test" infusion of mouse antibody did not go well, so the transplant team has determined that the antigen therapy and radiation is now scrapped.

The new "plan" is to hit it hard with a higher intensity chemo which she's already been warned that she should expect to get quite sick, after the chemo and her numbers come back, she'll have spinal and cranial radiation to further eradicate the leukemia cells.
One has to remind oneself that the idea here is that if they don't get ALL of the leukemia cells, the transplant won't work.

So, with the transplant still in the distance, the date has changed, approximately 6 weeks out and a new course of action is being worked up even as I write this.

I talked with her a while ago, and she said she feels good, her b.p. is back up and her heart is strong. She feels like the doctors are feeling good about her condition going in- heart and lungs are strong and all.

All for now-will update as I get more information.

with love and prayer's for Margie,
Kathleen

Margie rejects mouse...

2007-05-15T20:41:00.000-07:00

Today was Margie's "dress rehearsal" of sorts with the mouse antibodies. They do this to do a bit of a trial run to see how her liver responds as well as her other organs so that they are prepared for the real-deal antigen therapy coming up.
So today was an all day infusion of mouse antibody at the University hospital and apparently about one half to two thirds of the way through (she'd also been given the appropriate drugs to keep at bay any adverse reactions) Margie has some severe
allergic reactions to the infusions whereas her blood pressure dropped as well as her oxygen levels.

So, the medical team there reacted appropriately and tonight Margie is being monitored at the hospital, Dad went to the apartment to sleep and tomorrow they'll meet up with their transplant team to discuss the new "direction" as it were.

Sounds like antigen therapy and radition are not in the cards. Stay tuned and I will keep all of you posted on which direction Margie will be going after these latest events.

Most importantly, after what sounds like it was a very difficult day, both Margie and Robert are comfortably and sleeping.

Love, Kathleen

Today's Wonderful News!

2007-05-11T10:59:00.000-07:00

Yes, I just spoke with Margie and the best report she can have right now: Her spinal fluid came back clear:
NO leukemia cells!!!

That is fantastic news because it's one step in a supremely positive direction toward her transplant!

On a funny side note (just can't help but mention this) After Margie and Robert got this terrific news, they had a meeting with the chaplain STEPHEN KING. (Let the jokes begin!)

Today they've got meetings and still waiting on news of her antibody tests so that they will be able to proceed with the other detour procedure of antigen therapy.

But for now, WONDERFUL NEWS!!!

Love,
Kathleen

seattle art museum jumps

2007-05-05T18:44:00.000-07:00

Hi, to all,

Yes, yesterday I had a lumbar puncture where one of two or three doses of chemo, about 2cc are instilled into the cerebral spinal fluid to eliminate leukemia cells there. I felt fine afterwards except for feeling worn out, it was wonderful that Cathy was with us, it helps so much. If you like a focus for prayers other than generalized, pray this chemo does clear the spinal fluid, otherwise they can't go on with the transplant. Dr. Ridelle did say that in his experience that is the rule, that it does clear it.

I slept for 2 hrs when returned to the flat and Cathy went home after making us some coffee for that was the Dr. instructions to help prevent a spinal headache, which I haven't had, but was told they even give caffine iv for those who do have trouble with it.

This morning I woke up refreshed and ready to DO something on this rare free day. The 75year old Seattle Art Museum has been closed for two years for expansion and this morning at ten am was the grand reopening. They are actually going to be open for 48 hrs stright with entertainment around the clock and free admission. One of my favorite groups wa performing there this morning @ 11am so intending to take the monorail a few blocks away that would bring us fairly close, we headed out on foot at 8:30 only to find it does not run till 10 o'clock. So we walked for 45minutes and stood in line for a while as they had timed entrance. Then we saw and heard the govenor and mayor give short speeches, heard the Total Experiene Gospel Choir for a half hr toured the museum and lunched in their new restaurant. The walk felt great but so did the monorail going back. The humorous thing on this outing was and for those not familiar with the SAM, there is a huge moving sculpture in front of it depicting a human form that moves, hammering away at something, it is supposed to represent the working man, class whatever, it must be 80 feet high. So that is back in motion. Across the street there is a small entertainment business called the Lusty Lady and they have a marquee with two sides, one side said Congratulations Seattle Art Museum! On the other side it said: Keep on hammering- big guy!

I took another nap when we got home but later felt compelled to make chocolate chip cookies to christen this kitchen and see how the oven works.

To get back to business, I have a calendar from SCCA which goes like this: 5/9 lumbar puncture with chemo again, blood draw to test for mice antibody. 5/10 nothing. 5/11 meeting where they bring it all together- all the test results for which I have asked for copies of everything. 5/12 nothing. 5/13 start oral iodine drops to protect my throid from radiation for a month. 5/14 nothing. 5/16 test dose of radiation that goes primarily to leukemia cells,they say here, all day infusion. Oh, and a bone marrow biopsy.

5/16 hospital-gamma scans. That tests how much radiation is going to the organs especially the liver and based on those results which they take three days to do, the radiaion dose is calulated. 5/19 to 5/22 nothing

5/24 admit to univercity of washington medical center for therapy dose of antibody radiation again, seeks out leukemia cell and is the only treatment that does this, for which I must go into isolation for 6 or 7 days. No one comes into the room. This is what I was fortunate to be able to talk to this lady "Hope" about. She did all this and did well. She said you get bored in the room but you feel ok. It looks like any hospital room and has tv and a phone but you con't take stuff in there with you likt to entertain yourself with. I guess I could excercise.

A part of me hates to subject anybody reading this to this mindboggling sort of worst case stuff,I just say to you it made me feel so good to talk to one person who has been there and come out of it and when I spoke with her she was through the transplant and is feeling good. So even in what sounds so awful I am getting some reassurance snd thats for you too. So I guess do like I am, take one day at a time and celebrate the successes and sometimes even bad news can be good news in disgise. We just don't know where a development might lead, it can be positive later when it didn't look that way at first.

During Noah's life, his nurse wrote three words on a piece of paper:

ACCEPT CELEBRATE WONDER

Noah's family did their best to internalize those concepts and to act them out as much as possible, I find these words carry me forward now.

Tomarrow is Michael's birthday and we will be celebrating at home with he and Carol, Jeanni Greg John David Rachal William Alex Sammy and Rod and Colleen. Out on the deck. Maybe have a fire in the firepit I hope.

Love, and God Bless You, Margie

and yet another change....

2007-05-03T14:22:00.000-07:00

For any of you devoted readers, you've figured out by now that checking back is a good idea as things change sometimes daily here at Margies wonderful life! Is that what makes it so wonderful, I ask you dear reader?

So, you're with me so far with the whole found-leukemia-cells-in-bone-marrow- now -we -have- to -put- mouse- anti-bodies- and -radiation -through -her- body- thing, right?

Well, the latest is that from that lumbar puncture a week ago (spinal tap) they've found Leukemia cells in her spinal fluid too.
She and dad decided to flee the Hutch last night, went back to the island to have some much needed change of environment, dinner with Rod and Colleen and Mike and Carol and then tomorrow morning (friday) will be back at the hutch for chemo injected into the spine (2-3 days of this) Next week starts the whole process of the antigen therapy (mouse/radiation combo)

As you may wonder yourself, many questions have been coming my way as to the radiation part of this treatment. Stay tuned, dear reader, as we are finding out daily more information about this positively mysterious turn of events. So far, we know that the lead lined room, where she'll be isolated is called the "hot box" and that's for 7 days. We still speculate as to how fair Margie will be taking her meals...We do know that she'll be so "hot" that she'll be doing her own blood draws whilst she's in isolation!

That deserves a capital "OY-VEY!"

All for now. Mom, you are in all of our prayers
Love, Kathleen

Information on what's happening now

2007-04-30T22:45:00.000-07:00

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

2007-04-30T14:03:00.000-07:00

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

2007-04-27T15:24:00.000-07:00

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

2007-04-26T17:17:00.000-07:00

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!

2007-04-26T10:50:00.001-07:00

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?

2007-04-25T09:48:00.000-07:00

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

2007-04-24T08:41:00.000-07:00

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

2007-04-23T10:14:00.000-07:00

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

2007-04-23T10:13:00.000-07:00

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

2007-04-23T10:10:00.000-07:00

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

pictures from our seattle adventure

2007-04-23T10:08:00.000-07:00

pictures from our seattle adventure

2007-04-23T10:01:00.000-07:00

pictures from our seattle adventure

2007-04-23T09:52:00.000-07:00

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

2007-04-22T12:29:00.000-07:00

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

2007-04-21T22:11:00.000-07:00

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...

2007-04-21T13:45:00.000-07:00

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

2007-04-20T21:43:00.000-07:00

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

2007-04-20T17:08:00.000-07:00

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