Santa Claus

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

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

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.

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...

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.

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...

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

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

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!

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

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!

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

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

These pictures are of Cathy and her brother Richard

Cranial Radiation

full body radiation

Day 50 post Transplant!

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!

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

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

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

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

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.

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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!

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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

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"

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

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.

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"

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?

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

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

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

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...

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!

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

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

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

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

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

Love, Kathleen

The shots are working

Hey Guys,

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

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

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

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

Transplant on Fast forward

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

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

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

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

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

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

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

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

Debbie, our daughter arrived back from Ca last night.


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

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

The Big Flush / plus, input from the south

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

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

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

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

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

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

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

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

RED ALERT !!

What's this you say?

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

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

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

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


Kathleen

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

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

Way to go Margie!

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

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

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

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


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

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

two weeks in limbo ends monday

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

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

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

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

Yes,You came through Deborah L Thankyou.

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

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

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

Love to all Margie

Day Minus 11 !!

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

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

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

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

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

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

Love, Kathleen

celebrity transplant scheduled...

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

Back in the saddle again...

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

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

Fireworks Week

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

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

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

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

Fogs in...

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...

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

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

My Beautiful Mother

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...

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.

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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
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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

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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

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