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