Almost a week

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Tomorrow it will be a week since I got home. I’ll have an appointment with my local oncologist for a blood test. I’ll have a weekly blood draw until I go back to Duke in about 3-4 weeks. I don’t even remember when my appointment is, so I’m counting on them sending a reminder!

I think it will be a good long while before I leave home again. I keep finding things that remind me not to trust people. For example, in my back yard someone took an old broom and burned the end of it off. There’s an ashtray on my deck with cigarette butts in it. Things are missing (including prescriptions like percocet and xanax).

I have some lingering side effects from the SCT. There’s fatigue, which must be from anemia (I’m guessing). My eyes water constantly. I have a lot of trouble getting to sleep at night. The first several days I had achy legs, but that’s better now. I have what looks like mild rosacea. I feel like I lost muscle mass while I was gone, because my legs are weak. I’m walking every day, but probably not as much as I should. Last, but not least, my GI tract is still not normal. I was told it could take up to a month for that to get better. I plan on writing more about what the mucositis was like. I’m just not sure when. My concentration is weak, so writing is a chore. Oh! If you’re waiting for a reply from me via email, I promise to get that done soon.

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Home at last!

7

I made it home yesterday.  I’m SO glad to be here. I went straight to bed when I got home, and slept for what felt like forever.  I got up at 5:30 this morning, walked the dog and then went back to bed until 10:30.  It felt great to sleep in. It’s nice not to be on anyone else’s schedule.  I found myself feeling bored this afternoon, but that passed. :)

Thanks to everyone who made this easier for me.  You all know who you are. Thanks especially to Rachel and Monica.

More tomorrow!

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Day +14

7

I’ve just been told I’m going home tomorrow! I feel as well now as I did when I came in here, so I can only imagine that things will get better and better as time goes by. Years of drugs and chemo take their toll. This procedure will give me the best possible chance of having some long drug-free time.

I do feel tired, but that’s because my HGB hasn’t returned to normal yet, and there was that high dose melphalan a couple of weeks ago. I’m sure it takes time just to get over that assault.

When I get home, I’m starting a new life. I’m going to take good care of myself and make it as difficult as possible for the myeloma to come back.

Oh!  I get this catheter out tomorrow!  That alone is worth some celebration.

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Day +13

2

My WBC today was 7.0! My HGB dipped a little to 9.8, and the platelets are at 23. This chemo experience was a lot like Cytoxan, in terms of what it did to my counts, with the exception of the WBC, which got to 400 at its lowest.

Overall, the experience wasn’t as horrific as I imagined. I wouldn’t call it a vacation though. :)

I met someone here who had an allo transplant, which did not engraft. There was no match for her in the national registry. She had to use her son’s stem cells, which they said didn’t match. There were limited donors because she’s an African American. I wanted to find out if anyone has run a donor drive? I would like to try to help somehow.

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Day +12

3

The only thing I have to report today is that my WBC is 4.7! Can you believe it? As soon as I get the rest of the results, I’ll post them. It was mentioned that I might get to go home earlier than predicted.

I forgot to mention that I had my head shaved on Saturday.  My hair started to fall out some, so my sister went ahead and gave me a buzz cut.  Since then, it’s been falling out like crazy.  I could be bald in a few days.

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Labs

4

My WBC was 1.3 today, which is quite an improvement over yesterday (0.3).  My nurse tells me it wouldn’t be a stretch for it be double that tomorrow.  I could be going home as early as Friday.  I hope I can.

I’m 46 years old, but it bothers me that my parents don’t call every day to see how I am.  In my fantasy, they would call to ask my sister how things went every day.  They would even ask to talk to me. My mom, who lives about an hour away, would come to visit often.  The truth is, if I say nothing, they won’t even know when I’ve returned home.

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Day +11

2

It’s been 11 days since the first day my stem cells were infused. Time seems to be passing by very slowly, which can be torture at times.

I’ve been having some issues at home, which make me wish I was out of here and back home. My dog is going to be boarded Monday, I hope, which will resolve one of the problems I have. My housesitter has been unreliable, and I’ve found out that my dog has been left alone some nights. I also found out that my cat was left shut in a room for at least a day with no way out. It’s too hard to have to worry about getting better and what’s happening (or not happening) at home.

I called my neighbors, and they’ll keep an eye on things for me.

Other than that, I can report that my WBC went up yesterday to 0.3 from 0.2. My platelets were low at 14, and my HGB was 9.6.

Overall, I feel ok. I’m tired, so I just sleep when I need to. The mucositis is getting a little better. Not so much in the lower GI area, but better in mouth and throat.  Oh, except that I hurt my throat this morning on a sharp piece of English muffin.  The English make some dangerous food, so beware.

I’ve had some very strange problems with two of my toes.  They’re extremely black & blue.  I’ll have pictures, of course.

I’ll get my labs soon, I hope, so I can report on today’s results.

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Day +9

2

I had some good news today.  My white count doubled!  It went from 0.1 to 0.2.  Progress is being made.

I need platelets and potassium today, so I’m going to get hooked up and I’ll write more later.

Joyce is in treatment area B, too, but she’s in a room by herself.  I think that’s meant to protect us all from the icky stem cell smell.  My new nickname for her is “stinky.”

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