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