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.

Saturday Update

My computer and e-mail (swilder@ccccd.edu) are working again. I’ve moved into the new apartment. (Pics tomorrow!) To obtain my new address see the right side of this blog. For my new land line, call my cell phone. My new apartment does not have an answering machine, so if I’m not here it will simply ring and ring. I am only going to the hospital now on Tuesdays and Fridays.

Computer Virus…Better It Than Me

My computer crashed a few days ago, so I’ve been unable to check e-mail or update my blog until just now. Actually, I think CCCCD must be updating their system because I can’t even check my e-mail tonight. The problem is usually resolved by morning, so I’ll try again then. If you’ve got an urgent message to send, try sending it to Kirk’s work e-mail at kwilder@symphonysms.com.

Tomorrow I’ll be moving into my new apartment with the better view. Monday, I’ll have a caregiver. My neice from Vernon’s family. She’s a lovely young woman with so much to offer. I feel very blessed about all these changes. And Kirk and Jacob are here to help me make them.

My red blood went down to 8 today, so I was given a unit to bring my color and energy back. I do feel almost instantly better. It’s been two weeks since my last infusion. But this is my third. It is not unususal for this kind of thing to happen while in recovery for an allogeneic transplant. I am just grateful that I now have energy again. I had become quite the couch potato this last week. It was difficult just walking across the room a few times, so I slept a lot. Not too good for my mind or for my body. So receiving the blood means I can pick up my exercise again. Hopefully, my body will take over from this point.

All my other counts are normal.

Cassy is doing fine on the antibiotic Kirk’s been giving her daily. The cat chewed out all of his stitches, but that turned out to be fine, too.

It was looking very very hot and uncomfortable here in Houston last week. Then it rained all week and *poof* better weather. I mean, better for Houston, that is.

Prayer request: red blood count going and staying at normal; my new caregiver–working out the kinks in our relationship; travel for Kirk and Jacob as they head back to Frisco; my state of mind–as I begin to spend time alone before Julie comes after work.

New Digs

I discovered on Sunday that I have the opportunity to move into an apartment that overlooks a lake here at the apartments. There are many aspects of this apartment with a view that I think will help my recovery. For one, I’ll be able to comfortably have breakfast on the patio because the position of the apartment in relation to the rising and setting of the sun is more favorable. Secondly, it is on the first floor, more central to the fitness center and all the walkers and runners who regularly visit the lake in the evenings. I know this will inspire me to walk more as well as help me not to feel so isolated. I have a bicycle that I haven’t been able to use since being on the third floor means having to carry it down several flights of stairs. In a first floor apartment near a riding path, I’ll more easily be able to ride the bike. The nicest of all three pools in the complex is also closer to this other apartment. Even though I can’t really swim at this point, I find it can be a very nice experience to go down to the pool area when the sun is not too high and read.

So on Sunday I’ll be moving into this new apartment. My address will be the same, except for the apartment number. It will be #1116.

Tuesday I’m getting together with a nice girl Lynn hooked me up with, who may work out well as a caregiver for me during my last month/month and a half of time here in Houston. She’s going to come by my room on at the ATC unit on the 10th floor around 2PM on Tuesday. Then we’ll discuss the arrangement we’d have if she were my caregiver and try to catch up. The last time I saw her she was probably around 6-8 years old and it was at a funeral for Vernon’s nephew in Mississippi.

There is another pet problem going on at home, I found out last night. This time it is our dog, Cassy, who has apparently started to urinate uncontrollably in the house. Some of the urine, according to Kirk, appears to have blood in it. So Cassy is at the vet’s right now. I think it has been just too much for our animals these past few months since Kirk and I have had to be in Houston so much. I’m sure they are missing their masters (especially me). Neighbors have been so kind to step up and give love and care to our pets on weekends Kirk has come to Houston, but the stress may be starting to affect them in ways I’d never really considered.

Otherwise, I’m in good spirits and feeling good this morning, especially knowing I’ll soon be living in an apartment that better suits my needs in these last few weeks of my treatment.

Oh, I’m not sure I mentioned this. According to the last report, my bone marrow is now 93% Lisa. I thrilled at this on many levels. The main being that my myeloid cells, which were infected with the cancer, are now almost completely replaced by my sister’s cells. And my sister’s cells do not accept cancer. Instead they fight it. The result is I’ve noticed a few mild side effects, which may or may not be GVHD. Some doctors believe a mild form of Graft vs. Host actually facilitates the Graft vs. Myeloma effect–something that is very good for a long term cure. Mostly I seem to have a slight rash that itches hardly at all and some intestinal issues that may actually be more related to a new medication I started last week. Whatever the case, I feel confident that I’ve been given a new start on life with Lisa’s cells. And they are taking over so quickly. So like Lisa, you know. To take over so quickly. (Just joking.)

Prayer requests: Cassy (our dog) for her health; me for mild GVHD, if I get it at all and that my liver is protected and mended by the meds I’m taking; Kirk for his ability to bring the big accounts he’s slaving away on to fruition; Jacob and Vernon for their safety and fun at Grand Canyon; Julie and me that we would “click” and that she will work out as a caregiver.

Praise reports: my headaches bother me less and less; 93%!; Martin (our cat) doing better; Friday I had a reaction to an IV med, but it was easily managed with an IV of Benadryl.