Sunday, August 12, 2012

finally more to this story...

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Friday, April 20th
Today I receive Rabbit ATG, which is a T-cell suppressant. The T-cells are the ones that go after things that come in to your body that they don’t know or recognize and they fight them off. They would, therefore, fight off the Cytoxin (chemo) that gets rid of the other cells we don’t want at this point. I get the Rabbit ATG for 3 days and then starting Saturday, April 21st I will get Cytoxin for 4 days.
Another thing that happened today is that I was able to pull out clumps of hair. FINALLY! Ok, I am a little odd here in that I was very anxious to get to this point so I could shave my hair off! I actually am looking forward to embracing my baldness! I got so many scarves, caps, hats, pins, ribbons and bows to wear, I always teased that I was going to have the “best dressed head” on the floor! So, I went in to the bathroom with my little electric razor and started the shaving process! Everyone prior to me that I followed on their SCT process did a little Mohawk when they shaved, so I had to try it myself.

Then I ended up leaving my bangs only; I just couldn’t give them up. And, I got a lot of comments (mostly nice ones) from the staff so I kept them until they started falling off in my food! Then, they went bye-bye too.


The next couple of days are rather quiet and uneventful (thankfully).  I think it’s around Monday or Tuesday when I start with the loose bowels and therefore sore bottom. My nurse, Sophie; bless her heart, had such compassion. She got me Tucs, Desitin (like for a baby’s diaper rash) and the very soft, moist wipes to clean myself. Let me tell you and forewarn those of you following, that chemo toots and b.m.s are the most stinky you will ever experience. Fortunately, Linda Martin (previous SCTer) told me to get a spray air freshener and keep it handy! That was a good piece of advice! 
4/21/12 Midnight PCT is Georgia, but didn’t see her much. Dee replaced her at 8am, she’s a real sweetheart. Busy day, woke at 3:30am, so I’m tired. I seem to have a 3am bladder wake up call.  After laying for over an hour, I’m still awake; but I was able to lie on my left side, my favorite side, without the picc line bothering me like it had the last two nights. 
About 10:30am got Benedryl, Tylenol and the Rabbit ATG (which is a T Cell suppressant); so within an ½ hr from starting the line kept getting air in it and setting off the alarm about 6 times. Then in the next hour the allergy team came in to test me for my penicillin allergy. I was a young child when I was dxed as being allergic to it and they say that within 10 years you can grow out of that allergy. They were here for about 2 hours. Got pokes and pinpricks and pills and waited to see if there were any reactions. There were no reactions, so they are assuming I am no longer allergic to Penicillin. This is important because one of the medicines I will receive after transplant is in the penicillin family (cytoxan). Needless to say, after this busy morning, I did not get my “benedryl nap”! Drat! Sure hope I sleep well tonight!
I’m gonna watch church now on the computer, I can watch videos from the church I go to in Florida.
Sunday, April 22 eve/Mon, April 23 morn
Decent sleep, 9:30pm to bed; blood @ 2am, bathroom & back to sleep. Woke at 5am. Even with ear plugs and eye covering mask, it's hard to get a good night's sleep in a hospital! I woke to being
dizzy again, got help to go bathroom. They do an EKG before administering the cytoxin,  and this morning's test was a very slow reading. It seems that the machine got switched to a half reading so it took longer and read weird. They had to do it over. I'm still dizzy & doc came in to see me.
Said to doc that dizzy comes & goes; I get it 1 or 2 x per month, sometimes it lasts couple min or an hour, but the last one was the worst which was after the mobilization dose of cytoxin (about 7 hours), so time will tell. Hopefully it will not last all day or long time. I feel bad because someone has to come and help me go to the bathroom every time so I don’t become a fall risk. That I appreciate but you really feel tethered. Better safe than sorry. Sunrise coming up, see the pretty pink thru the screen.

Blood work decent, electrolytes look good, EKG is okay!
Tues, 24th 6pm
Pretty useless day, healing day! That’s what I’m calling it. Praise God, no pain or nausea. I had a little burping so I got some Zophran. Still breathing heavy, so just did a lot of resting which is good and then heard from my friend Tanya, which was great. Things are ok at home, Eddie is dealing w/ IRS since paperwork was done wrong at our financial institution; but it will get fixed, I’m sure. I’m praising God for that. Feeling the prayers from everyone, I appreciate it so so much. It put me in a mood of praise myself and that feels so good.
God, I love you so much. I praise you, adore you and worship you. Thank you. I lift Stephanie to you Lord and Shelley and the CIDP people! May they rest upon you Father and feel your great love. You are so worthy of our praise Lord. Thank you.
I got my cytoxin today and tomorrow I get a day off. Thursday I get my harvest and Friday I will get another dose of chemo (different kind though). Just one more! Yehaw! 
Wednesday, April 25th
I’m really tired today. When my housekeeping gal, Andrea, comes in we kid around a lot but not today. I think I barely got a wave to her. I’m thinking I’m beginning to get neutropenic and started with a bit of a fever, so I get to get another antibiotic.

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