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