Another milestone

I did not know Susan Butcher, the four-time Iditerod champion, but I read of her death, a year ago today, following a donor stem cell transplant. That affected me a good deal, thinking that if someone that strong couldn’t make it, then how can I think I will? But she had a different cancer, and was affected by graft vs host disease. The main reality, though, was that one could survive from March

Remission!

I found out Friday that I’m in remission and that I’ve engrafted 100% with my sister’s cells!

I did not have to receive any blood on Friday, as well, since my counts only reduced by .5 since Tuesday.

The time needed to receive Magnesium has also been reduced to 2 hours in the clinic and 1 hour at home.

They may start to taper me off the Cyclosporine in the next couple of weeks or allow me to do that from home with my local oncologist.

I also found out that I may be able to return home sooner than I expected. Most likely before Jacob returns to school on August 27th. That means it could be as early as the 22nd or 23rd that I’ll be leaving Houston to come home.

I feel so blessed and am already starting to pull together all the threads of administrative concerns to make my leaving go as it should. My energy is good, too. Good enough to start doing better in physical therapy. By the time, I’m able to return to Frisco I should be able to have much of the recovery process completed. Then I focus on my family, friends and even school.

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Remission!

I found out Friday that I’m in remission and that I’ve engrafted 100% with my sister’s cells!

I did not have to receive any blood on Friday, as well, since my counts only reduced by .5 since Tuesday.

The time needed to receive Magnesium has also been reduced to 2 hours in the clinic and 1 hour at home.

They may start to taper me off the Cyclosporine in the next couple of weeks or allow me to do that from home with my local oncologist.

I also found out that I may be able to return home sooner than I expected. Most likely before Jacob returns to school on August 27th. That means it could be as early as the 22nd or 23rd that I’ll be leaving Houston to come home.

I feel so blessed and am already starting to pull together all the threads of administrative concerns to make my leaving go as it should. My energy is good, too. Good enough to start doing better in physical therapy. By the time, I’m able to return to Frisco I should be able to have much of the recovery process completed. Then I can focus on my family, friends and even school.

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Great News

Two really great bits of information came to me today in my meeting with my team.

One, I have 1% plasma cells. That is normal. There are more tests that need to come back, but Dr. Popat said it probably means I’m in remission! More on this as it comes to me.

Two, I may be able to come home by day 84. Perhaps even soon. That means before Jacob starts back to school on August 27th! Now THAT’s exciting.

(Picture: one of my mom’s heart-shaped pancakes, which are her specialty; she made some the last time she was here.)

feeling good at day 220

Hi to all,
well its been a long time since i posted and i just wanted to give you all an update–its now day 220 if i calculated right and i am doing great–as far as i know i am still in remission. i am just on aredia treatments every 2 months i go back for a complete check up in Oct. But i am basically back to normal. i still do not work as i wasn’t before but i am pretty much able to do everything for myself as far as daily functions and such. It seems unreal that i am posting and still in remission. i had my SCT DEc 29th and i am doing good. My hair is still short but none the less its hair. It is all salt and pepper and i am thinking about coloring it as i always did before but am kinda reluctant. Has anyone ever colored their hair after new regrowth after chemo. My hair. started growing back in feb so i quess it has been6 months. it is pretty baby fine. so i am wondering if it would be good or okay. Well to all who are thinking about having a SCT just do it it is so worth it. i will admit its tough but you do get better and remmission is the altimate result hopefully for all. to all my myeloma friends hang in there —there is hope.
Sincerely, Susan

Fun With Denise

My friend Denise found a way to get off from work Monday, so she could hang out at the apartment. We are watching The Prestige, a riveting movie (so far). Right now, she’s on the phone with her sister (my mom called just a few moment before) and the movie’s paused.

We did the yoga DVD that mom and I bought in July. I found it easier to do than when I tried to do the poses then. It is a nice reminder that I am getting stronger and healthier. I’m not saying I was able to do ALL the poses. But I DID do all the “Downward Facing Dog” poses (about 4 in a row,) which is something. Last time I was barely strong enough to do just one.

It rained much of the day today, but Kirk was able to be off to Dallas without too much trouble from weather. He back now in Frisco already, admitting that the drive is starting to wear on him a bit. I think he may need a book on tape or something. Denise brought Steve Martin’s Pure Drivel, which I love. I only listened to one of the “stories” on it, but it was very funny. I’ll have to make sure Kirk gets a copy to enjoy on his way back to Dallas next weekend.

Friday turned out to be a crazily long day. I needed two units of blood. Funny thing is I didn’t feel so bad. No headaches. No terrible weariness. But my counts had fallen below 8 and that’s the magic number. It took them longer to find a match…though the “critical shortage” of last week seemed to have righted itself. I had two units and did not leave until after 11PM! I am hoping THAT was the last time I’d need that.

Back to the movie!

Not detectable!

There actually is time to worry, after all. When the doctor told me he might want to do a bone marrow test for myeloma if my blood counts continued to go down, I experienced some anticipatory anxiety, best relieved by thinking of something positive. My positive thought was being so glad that Gene is now 13 instead of 10.Instead, though, we did a simple blood test for the protein that the myeloma

A Little Experiment

Since I’ve started eating more…well, it appeared my gastro-intestinal issues were worsening. So I called my Pharmacy M.D. at the hospital to see what he would suggest I do…other than taking Immodium three or four times a day. He brought up the dreaded G-word (you know, GVHD) because some people get it in that form. He suggested, however, that I stop taking the Magnesium Sulfate tablets (a known laxative) for a day to see if my “issues” stopped. If they did, then that meant my discomfort was caused by the Magnesium not GVHD.

I’m happy to report that as soon as I stopped taking the Magnesium, my symptoms disappeared. So this gastro stuff is not being caused by anything all that terrible…just too much Magnesium. I wonder tomorrow what the doctor will think I should do, since taking 4 tablets (that’s 2000 Mg) of Magnesium is too hard on my system. I imagine he’ll say for me to try one tablet for a few days, then see how my counts are doing. Then go from there.

Well, enough of that! Kirk is on his way here as I’m writing this. He had to leave a bit later than usual to prepare a very important RFP (or something) that’s due in the morning for a very important client. Kirk called an hour or so ago and said he was not sleepy, since he’d gone to bed early enough last night. I always hate it when he drives here so late. He must be made of sturdier stuff than me. I know I’d have to pull over and end up sleeping the whole night through on the side of the road!

I’m excited to report that the people upstairs have finally calmed down enough to stop what sounds like elephant mating. Every once in a while I hear the sound of an Arabic-sounding dialect coming from the patio above. I wonder what’s got them so riled up!? Could it be the stock market’s sudden descent? Or just a baby that won’t go to sleep. Or maybe I’m just going to bed a bit early (11:30PM!) for most humans, who (apparently) like to take their elephants for a walk around their apartment before turning in for the night.

(Can you guess what the picture is above? I’ll give you 2 hints: it’s green and it sits on a pond.)

Photographs of My New Apartment and Julie

Finally, photos! Here are the pictures I’ve been promising. As you can see, I now have a great apartment with a great view of the “lake” and its fountains. The French doors lead to the patio overlooking the water. I’ve also included a picture of Julie. She reminds me very much of Jim (Patti’s husband). She’s a lot of fun and I’m so blessed to have her as a caregiver (that’s for sure.) And though I didn’t take pictures of my first apartment (meaning: you have no point of comparison,) this apartment is much more suited to my needs. Mainly, I really need to see people out walking around the lake or the Muslim children riding their little bikes as their mothers dressed in black from head to toe watch from the steps. In summary, all these blessings lift my mood by keeping me connected with the general hub bub of humanity.

Yesterday was another long day at MDA. I was there from 8AM to 5PM doing various things. During that time I actually found time to go work out with the physical therapy team. I was evaluated a month ago and found that my general health had actually improved. The only problem I need to work on really is my endurance.

My red blood count was not as high on my labs as I would like. Despite that, I still have energy and no headaches. So it is not such a problem. All other counts are good. Every day it seems I am feeling better and finding myself able to do more physically.

The other good thing is that I do not need to go back to the hospital until Friday. My days were reduced to two (Tuesdays and Fridays,) which is very good.

A Game of Wii

It’s a long Tuesday at MDA today. Longer than usual, since I’m here at 8AM for some blood work. Good thing I’m feeling better.

Tonight or tomorrow I plan to take pictures of the new apartment so I can post them on this blog.

Last night, I played games for the first time on a Wii. Bowling…electronically is the best way to describe it, if you’ve never played on a Wii. The Wii belongs to my new caregiver, Julie, who is a niece of mine by my ex-husband. Things are working out well with her. We seem to actually like watching the same sorts of things on television. Watched stupid mind candy liked “Age of Love” last night. The night before we watched her DVD of Kira Knightly (sp?) in Pride and Prejudice. It was the first time I’d seen it. And I thoroughly enjoyed it.

I’ve been eating and exercising better lately. Last night, believe it or not, the weather was so nice out, it was really nice getting out for a walk around the lake that’s right outside my patio.

Friday I have a bone marrow biopsy and then some tests on Monday to see how I’m doing with the cancer. I fully expect that they’ll find nothing left. The full report probably won’t be out until next Tuesday (that’s when I see the doctor typically).

I praying that I won’t need any more red blood infusions, since they are having a shortage around here. It makes it difficult to get units of blood. Whatever the case, I’ve learned that able-bodied people ought to go out right now and give blood, if they can. It’s a shortage that happens every summer apparently.