Well we are working on the BEA portion of BEAM, I had B the first day, the 4 days in-between I am loaded up with EA and on day 6 (Thursday) I get M. Friday is transplant day... day zero, re-birthday, what ever you want to call it I have heard many names, lol... but a big day none the least.
So I am fairing pretty good, getting a little nauseous but nothing extreme, getting a little tired and emotional due to the tiredness but what can you expect when you are woken up multiple times a night to go pee and get vitals done. Its a fun time I tell ya.
I have a great roommate and great nurses which is fantastic. Our one male nurse has a blast with us and holds pissing contests to see who peed the most. She beats me everytime by a few hundred ml buts its always close, lol... gotta make fun where you can around here!
Starting to go a little stir crazy, walk figure 8s in the halls between the two wards to maintain my sanity. Provided there is any left at this point, lol...
Hubby spends lots of his days here which helps a lot, just having a tough evening missing the kids like crazy tonight. Skype is helpful but you cant get cuddles through it :(
Still got my hair, falling out slowly, should be interesting to see how long it takes to all fall out.
Well Im going to go do some figure 8s and enjoy the views.
Goodnight my dear family, friends, and followers
Monday, July 15, 2013
Wednesday, July 10, 2013
Catch up time
As I sit in my 150 sq ft. apartment (if you can even call it that) rental in Vancouver I have some time to take a breath and catch everyone up with the last week. It has been a crazy one so its nice to have a little unexpected downtime today.
I will start off with the G-CSF shots... not horrible, but not nice by any means. The shots themselves hurt 2/4 days. We experimented with different parts of the body and the spot that was virtually pain free was the stomach. My poor stomach. I had 2 doses of the G-CSF so that meant 3 shots to the belly on those days... its bruised pretty bad to say the least. The bone pain wasn't too bad for me, Claritin did not help. I had a dull ache in my lower back, and sometimes if I moved too fast I would get shooting pains up through my back but it subsided quickly thankfully. So all in all not too bad of an experience.
So that will bring us to Monday when I go in for my Tri-fusion line insertion. I hadn't been told much about it to start off with, so imagine my surprise when I get there and they tell me I need an IV. I completely broke down. As we all know by now I have no veins which is why I was getting the line in to start with. So they try to console me and tell me they are experts, not to worry. I have heard that line before so I was not reassured. So the nurse comes in and beats the crap out of my hand. I am glad they are able to use a small IV as any bigger veins are completely gone. The nurse gets the IV in my hand the first time. Thankfully. So going in I am told they give me a sedative and fentanyl for the pain, and there's a good chance I will be loopy and not remember the procedure. Sounded good to me. After the problems with the PICC line going in I would rather not remember any of this. But do you realize what happens when you are mentally freaked out... the drugs don't work too well... I was very coherent for the whole procedure... which sucked because as usual with me it wasn't just a straight forward procedure. Needless to say anytime I felt any twinge of pain I was asking for more fentanyl, which they gave me, but I ended up having a LOT more than they usually use... oh well... It wasn't major complications they were running into, but with the Tri-fusion line the tubing is thicker and stronger and therefore not as flexible as they are used to with a normal Hickman line so it took a bit more to get it in place. But they got it, and unfortunately I remember the whole thing... its not pleasant to feel them tunneling under the skin for the tube I tell ya, nor is the fact I can feel the tube under my skin if I run my hands over it too pleasant either, but it is worth it for how easy it made yesterday.
So this takes me to yesterday, stem cell collection day...
I will start off with the G-CSF shots... not horrible, but not nice by any means. The shots themselves hurt 2/4 days. We experimented with different parts of the body and the spot that was virtually pain free was the stomach. My poor stomach. I had 2 doses of the G-CSF so that meant 3 shots to the belly on those days... its bruised pretty bad to say the least. The bone pain wasn't too bad for me, Claritin did not help. I had a dull ache in my lower back, and sometimes if I moved too fast I would get shooting pains up through my back but it subsided quickly thankfully. So all in all not too bad of an experience.
So that will bring us to Monday when I go in for my Tri-fusion line insertion. I hadn't been told much about it to start off with, so imagine my surprise when I get there and they tell me I need an IV. I completely broke down. As we all know by now I have no veins which is why I was getting the line in to start with. So they try to console me and tell me they are experts, not to worry. I have heard that line before so I was not reassured. So the nurse comes in and beats the crap out of my hand. I am glad they are able to use a small IV as any bigger veins are completely gone. The nurse gets the IV in my hand the first time. Thankfully. So going in I am told they give me a sedative and fentanyl for the pain, and there's a good chance I will be loopy and not remember the procedure. Sounded good to me. After the problems with the PICC line going in I would rather not remember any of this. But do you realize what happens when you are mentally freaked out... the drugs don't work too well... I was very coherent for the whole procedure... which sucked because as usual with me it wasn't just a straight forward procedure. Needless to say anytime I felt any twinge of pain I was asking for more fentanyl, which they gave me, but I ended up having a LOT more than they usually use... oh well... It wasn't major complications they were running into, but with the Tri-fusion line the tubing is thicker and stronger and therefore not as flexible as they are used to with a normal Hickman line so it took a bit more to get it in place. But they got it, and unfortunately I remember the whole thing... its not pleasant to feel them tunneling under the skin for the tube I tell ya, nor is the fact I can feel the tube under my skin if I run my hands over it too pleasant either, but it is worth it for how easy it made yesterday.
So this takes me to yesterday, stem cell collection day...
Here I am all hooked up with the blood flowing out of one lumen, through the machine, and back into my body through another lumen. (I have 3 lumens, hence the name tri-fusion).
here is the cell separator machine
So I lay in the bed for about 6 hours while the machine does its job and I watch tv, not too bad of a day but it makes it kind of long when you can't do anything but lay there. So after the 6 hours they take a sample and send it to the lab and tell me to come back in 2 hours for results. The doctor who saw me in the morning was optimistic we might get all the cells in one day based on my counts in the morning, my age, and the lack on chemo I have had previously. Well he was right. I go back for my results and they tell me I am good to go!! Woohoo... hence why I have some unexpected downtime today.
So today I get to pop over for a quick dressing change as my incision to my line still likes to bleed a little (I can never be straightforward now can I, lol), then a Dr.s appointment in the afternoon. Tomorrow we have another dressing change set up Friday just in case I don't get admitted. I wont find out till lunchtime Friday if I go in, so its all very last minute. So for today I will enjoy time with my hubby, some sunshine if it pops through, and not having to spend another 6 hours in the hospital. Just wish I could be with my kids too!
Wednesday, July 3, 2013
enjoying life in the moment
Not much going on health wise this week which is a nice change. Picked up my Neupogen shots today which I start on Friday. Not looking forward to more shots on a daily basis but what can you do. I have heard taking Claritin can help with the bone pain it causes so that's what I am going to try. Want to be able to enjoy my last weekend at home without pain if possible. If not I have T-3s to fall back on. It will be a good weekend one way or another.
Had some bloodwork done this morning, it went well. The tech got it on the first try and it didn't even hurt. Last blood draw will be Sunday. After my Neupogen shot on Sunday its off to Vancouver for the next 6 or so weeks... boy am I going to miss everyone, especially the kidlets. Enjoying my time with them now however. And we are hooking up Skype to keep in contact so im sure that will be helpful to us all.
Spending most of this week trying to visit lots of friends before I go over, over the weekend we had a family wedding and BBQ so I spent all weekend with a tonne of the family which was terrific. We don't get that much family in one place too often so its great to catch up, and of course get lots of hugs from everyone. I never turn down a hug, just ask anyone I used to work with, lol... Im a hugger, lol ;)
Will probably be quiet over the next few days besides the visiting I am trying to get in, so hope to update Friday night and let you know how the shot went... cross your fingers for no bone pain!
Had some bloodwork done this morning, it went well. The tech got it on the first try and it didn't even hurt. Last blood draw will be Sunday. After my Neupogen shot on Sunday its off to Vancouver for the next 6 or so weeks... boy am I going to miss everyone, especially the kidlets. Enjoying my time with them now however. And we are hooking up Skype to keep in contact so im sure that will be helpful to us all.
Spending most of this week trying to visit lots of friends before I go over, over the weekend we had a family wedding and BBQ so I spent all weekend with a tonne of the family which was terrific. We don't get that much family in one place too often so its great to catch up, and of course get lots of hugs from everyone. I never turn down a hug, just ask anyone I used to work with, lol... Im a hugger, lol ;)
Will probably be quiet over the next few days besides the visiting I am trying to get in, so hope to update Friday night and let you know how the shot went... cross your fingers for no bone pain!
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