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Home Again!

I am happy to report I am home again. This is probably my last weekend home for a couple of weeks however. Although I have not gotten the official yes on the transplant I am very hopeful. You see my schedule next week brings not only my Data Review (with the doctor to get the yes or no) but they have me scheduled to get a Hickman placed and start Leukapheresis. I can't imagine they would have scheduled me for those things unless my test results showed we can move forward. Now I know they have not given me the official yes yet, and they added a couple extra tests last week, but I'm hopeful. :)

Last week as you know was a little quieter. I had my Bone Marrow biopsy on Monday which I have to admit I was quite nervous about. Not because I was afraid of what it would show but because I had been told by many, many people that it is one of the most painful tests you can go through. This was not true for me. It wasn't too bad, but it was one of the more uncomfortable things I have had done. The tech walked me through the whole thing and they gave me some oral sedation (a pill.....not sure what and a Fentanyl Lollipop). She of course also numbed the area (same as they do with a spinal tap). Very much like a spinal tap the needle going in was not too bad. What made it uncomfortable is that when the needle reaches the bone you can feel a scraping sensation. It doesn't hurt, it's just odd. Once they get into the bone though and draw out the actual Bone Marrow....now that is what hurts. Fortunately it only lasts about 30 seconds each time. For me it was like this extreme pressure that hit my nerves (although I don't think it actually does hit the nerves) and sends an intense shooting pain down the legs. I expected my back to hurt after, and it was a little sore when the numbing meds wore off, but it really was much better than I expected.

Tuesday brought my clinic visit and appointment with my study RN as well as my dental exam. Wednesday was a day of relaxation and Thursday brought me labs and a MRI. I was not scheduled for any appointments on Friday but at the last minute they added an Echo in Bellevue for Friday morning as well as my dental cleaning. I'm guessing the Echo was ordered because of my being on Novantrone, but I'm not sure. It just might be part of the routine testing and that is the earliest they were able to get it in. I'm not too worried about it as I have had many of these done.

At this point I only have my schedule through Wednesday but I have been told what the plan is. I don't have any appointments on Monday, which I have to say is nice because it allows me to stay home an extra day and get some things done here. Plus my mom is coming to Seattle with me this time around. Although I am not scheduled for anything Monday we will be headed back Monday evening because my week will start bright and early Tuesday. Okay, maybe not so early but if we were to do the 4 hour drive to Seattle Tuesday and get there on time, we would have to leave at like 4 or 5 in the morning and well, I'm just not that big of a morning person. :) Going over the night before will be best.

Tuesday I have my Data Review with the doctor. I will finally get the official yes or no. I'm thinking it's a yes because of the rest of my schedule but I guess I will find out for sure come Tuesday morning. They have me scheduled to take the caregiver classes (along with my caregivers) Tuesday as well. They are on how to manage care once home and food safety/prep. They already went over some of the food stuff with me and it's amazing how little things that we don't even think about could make someone in this situation sick. Like eating a banana....most people would never think to wash the outside peel, after all you just peel it and throw it away, but that could get me sick. Who would've thought?! Anyway, I'm scheduled to see the PA for my weekly visit and have my Hickman placed on Wednesday. I can't imagine they would schedule that if they were not planning on going through with the transplant but I guess you just never know. I don't actually have my schedule past this but I have been told that I will be starting Leukapheresis on Thursday morning and the G-CSF (Growth Factor to stimulate the Stem Cells) on Saturday. Also I will be starting Prednisone at some point next week. As soon as I know more, you will be the first to hear about it (okay....not really, my family is, but you all are a close second).

I hope you are having a wonderful weekend. I have spent the day relaxing and plan to spend tomorrow with my family. Take care everyone!

3 comments:

Denver Refashionista said...

Enjoy being home.

Kim said...

I hope all goes well with the rest of the results coming in!

Blinders Off said...

Jaime,

I hope everyting goes well for you. Enjoy your time at home.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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