Tuesday, December 25, 2012
To read earlier posts, look to the right - Jan 2012 starts it all...
Wednesday, May 2nd
Jackie came on at 8pm (actually still Tues the 1st), start of headache, and the question is; do we wait to see if it gets worse or do you nip it in the bud? We decided to stop it early and got the Zophran right away and the Norco for the headache. Went to sleep and 1:30 am they came in to draw blood and we had good flow out of the PICC line tonight, Yay! I do have to sit up though for this to happen for some reason, it just works better for me that way, so I just do it. And then I usually go to the bathroom and get weighed and vitals done. I finally lost a lot of the water weight, about 10 pounds and feel so much better, so much less bloated! I had an Ensure since I still do not want to eat a lot of food. Stayed awake for a little while, watched some of the weather channel with this guy who took pictures in Puerto Rico; down in the caves and up in the mountains. It’s such a beautiful island. I actually got engaged to my first husband there.
When Jackie came in about 5am I needed platelets, my numbers are at 7! Which is my favorite number and it is the number of completion, biblically. I shared a bit of my story with Jackie and got a bit teary eyed as to how blessed I have been through this whole process.
It’s a quiet, peaceful morning here; not much color in the sky yet. If not too colorful, I probably won’t take a picture. It’s supposed to be 85 degrees today! You never know what you’re going to get, weather-wise. Not that it matters to me, being inside all the while. It’s supposed to get cooler again over the week end.
Thursday, May 3rd
Overnight, I was awake, asleep, awake, asleep. Nothing bad happened, but did have some nausea and headache medicine before I went to bed. Wake up for blood draw, drink an Ensure. Wake for vitals early. Needed platelets again today (#3) and those wonderful Neupogen shots to get the blood cells multiplying! I’m at day +7 and I will keep getting the Neupogen shots until the numbers start to rise – so, rise numbers, rise!! Beautiful sunshine this morning, I slept through the sunrise but I imagine all will enjoy the warm sunshine today.
I’m getting company today!!! Yay, my girlfriend Carol is coming up from Florida to stay with me for about a week! I’m so excited. She and I share the same birthday and we’ve been friends for about 15 years. It’ll be good to have her here, we laugh a lot! She owns her own business and can use the break as well! Works well for both of us. J She brought me CHOCOLATE!! And a few other little goodies, she is such a good friend! She knows I’m gluten free, and she brought some yummy GF treats.
This is a post SCT picture, we didn’t get to get a picture together when she was up in Chicago with me!
Before Carol got there, I took a shower (nice of me, huh?) and noticed a slight rash on my lower left abdomen. Hhhmmm, wonder what that’s about. I showed it to my nurse Carolyn, and she said we will keep an eye on it.
By the time they came back to give me my evening meds, the rash had spread farther across my tummy and was under my bandage at my PICC line (which concerns me most, of course) and up and down my right arm and hand. I noted that my knuckles were very dry and rough the last few days but thought it was from washing my hands so often and using the sanitizing stuff. I did have to get platelets again, which you get Benadryl and Tylenol prior to that, and the rash is still spreading not getting any better! Tomorrow the dermatology team will come in to take a look at it.
Friday, May 4th
Waiting for Team Burt to check on me and let me know how my numbers are doing! Today is Day +8 and all is going well as expected. Dermatology came and examined my rash. No action taken at this point, we’ll just see how things go from here.
I had a bag of platelets and one unit of red blood cells as a boost, when you get them they usually raise your blood counts by one point and I was at .2 and it should put me over 1, which is why I may get to go home!
Saturday, May 5th
1:15 am, my nurse tonight is Joe and he just came in to draw blood. I didn’t need any meds before bed tonight, Yay! No nausea or pain meds which have been the norm for me before; but I do have a little discomfort from the injection sites of the Neupogen, just not enough to worry about. I got a bed that is different than most of the others here that I have heard about in that mine doesn’t “blow up and release”. I think it’s been a blessing though because the bed makes a lot of noise when this occurs. I just have to roll back and forth, right side, left side and a little on my back. I’m not much of a back sleeper because I don’t seem to be able to breathe as easily in that position. If I put the top of the bed up a little bit, that works okay.
Everything is going just wonderfully, I’m glad to say. I had my middle of the night usual ritual of toilet time, Ensure, a little TV watching and then back to sleep. Awake again at 5:30am with just a little back pain in the lumbar area from Neupogen. I might do a Norco, perhaps. And I might get discharged today! Yes, today is the day!! Blood count is up so I can leave!! The best part of the whole day was getting the PICC line removed! My regular nurse was leaving early, so another nurse I had met only once before for a short stint was the one to do the honors. This is a picture of how long that sucker was that was in my body. It went from my inner arm (just above my elbow joint) to the center of my chest.
This is Lauren, wonderful nurse who removed my PICC line:
Carol came in to this good news and we packed up my stuff and went to say good bye to some folks on the floor! I also had to wait for something before we could actually leave the floor and when we could we walked over to the Galter Pavillion to the Walgreens there to get my prescriptions, and they were closed! They close at 4:00pm on Saturdays and it was about 4:10pm. It took all I had to make that trek, which is only about 2 blocks but that was all I could do. We took a taxi back to the apartment. Got hold of Amy and they transferred the prescription to the other Walgreens. I appreciate Walgreens for that perk, you can order from anywhere and they can get it for you from any other Walgreens, even in another state! Those of you following me for a SCT, this is a good note for you to get settled in a Walgreens near you if possible so you can do the same. As I rested, Carol went to pick up my prescription (she only needed to know my home address) then we order Thai food from Grubhub.com. It tasted so good, because we got home about 5:00pm and until we decided and they delivered it was about 6:30pm and we were HUNGRY!! I had to take another pain pill for my achy back and about 7:30pm I crawled back in bed, talked to Eddie a little bit and then just crashed. It felt so good to lie down on a real bed (queen) and spread out if I wanted to! To be able to roll over without having to lift my body and turn side to side is great! Slept until 11:15 when I woke to use the bathroom and I took my Clonazepam (like Xanax) and slept until 4:30am. Woke for a little while again and went to the kitchen to set up the coffeepot for when Carol woke up and went back to bed and slept again until about 7:30am!
Sunday, May 6th
I got up for breakfast, spent a little time on the computer; probably facebook and my e mail. I actually managed to stay up until after lunch, and then I took a 2 hour nap. At about 5:00pm I was able to remove my bandage off the PICC line incision and take a shower! Can l tell you how glorious that felt? I wasn’t tethered to an I.V. pole nor did l have to wrap my arm in saran wrap to keep the PICC line dry. The rash is still pretty prominent and tomorrow I go for blood work, so I will make sure they know it is still present. Other than that, I am feeling pretty good. I’m going to get dressed and maybe take a walk down the halls in this hotel!
Monday, May 7th
We went to Galter Pavillion this morning for my blood work; I don’t know when the results will be back from that. Took a cab today to and from everywhere, feeling pretty tired. We went to the Castle and the Elephant for lunch then went back to the apartment and I took a nap. When I woke up I was a bit hungry since I only had soup at lunch so I ate some leftover tuna and crackers. Ate dinner and went to bed early. Carol is still here and she is reading a lot and just relaxing herself. She owns her own business and this has been a good break for her (so she says, she’s a good friend to come babysit me!).
Tuesday, May 8th
I still got the rash, using hydrocortisone ointment on it. They told me to stop taking the Diflucan, because it could be what is causing the rash. It has spread all across my torso and arms and it itchy as all get-out! Ointment is not really helping, neither is the prescribed anti-itch medicine! L They are going to have me up my prednisone to 60 mg for 3 days, 40 mg for 3 days, then 20 mg for 3 days, 10 mg for 1 day and back to my normal 7.5 mg to start the decreasing regime I am on. If this is the only bad thing that has come of this whole transplant process, it is so worth it. Other than that, I’m just still tired (of course) and weak. If I’d do a little something, I’d get so tired. Carol went out grocery shopping for me this morning and made a grape salad which looks absolutely scrumptious. We had lunch from downstairs today, Carol had a huge Greek salad and I had chicken salad and French fries and we both have leftovers.
Wednesday, May 9th
Carol left today, we had such a nice visit and I am so thankful that she was here for me. It seems like whenever I needed someone when something was going to go wrong or when I needed extra help, God always had someone here for me at that time! Ruth Ann was here when I had that dizzy episode, Eddie was here his first time when I got the fever and needed to get to the ER, and Carol when I needed help with getting me and all my stuff out of the hospital and back to the apartment. Of course, God himself has been with me through it all in a way no other could be! When I was here alone, I seemed to get along just fine and nothing happened that required anyone else but Him and me!