I was discharged on Wednesday. This was day 12 and not too bad because it was on the low end of the 12-16 day range in which my body could respond to the new stem cells. My platelet count rose from 13 to 17,000 which indicated that my body is making platelets on it's own. This is great because the platelets are usually the last cell line to spring back.
So I am home in Colonie. I am taking it easy as I have to consider my immune system is like that of a new born baby. I have some cautious limitations... no public exposure without a mask, but I can be outside without a mask. Daily walks are encouraged. Daily showers and food limitations are being followed until my doctor clears this off. No take out or restaurants for a while. Meat and veggies need to be cooked well. A small price to pay for a new immune system.
My meds are minor, vitamins, folic acid, an antibiotic and acyclovir an anti viral drug for a year. childhood immune shots will have to be given again.. I Hope I get a lollypop...
Through all this I continue to marvel, praise and thank God for all He has done in my life this past year. my eyes have been opened up to His ways and means and He amazes me every day. We serve an Awesome God.. full of grace and love for us all.
Mikeys Blog
Early in the year of 2012 I was diagnosed with a large B Cell Lymphoma. This blog I have been using to document this experience.
Saturday, April 6, 2013
Friday, March 29, 2013
BWH up to Day 7 (3/29/2013)
Well it's been a crazy past few days. The mouth sores have continued but they respond well to the pain killer. I've receive 3 units of blood, 1 on yesterday and 2 on Wednesday. We also have been keeping an eye on my platelets which were 3,000 /cc3 this morning so I be getting a unit of those today.
White counts are the biggy. I've gotten 2 shots of neupogen and today I'll get another. My count today was 0.05 /mm3 which is actually up from 0.02 and 0.03 the past few days. That's good trend.
Doctor Wu and her PA came in today and the "D" word was used a couple of times.. no not diarrhea, but discharge. Cathy and Andy are here today.. Joni and Kayla are on the way. Peter, Holly and Annie will come out on Sunday..Jon and Sammy...maybe Saturday. Some staff are saying .. Oh I'm off later this week and you will probably not be here when I get back..
These are all very encouraging but I'd like a date please.. :-)
Also I just noticed today my hair is falling out yet again.. I can always tell because my mustache "feels sore".. Then I do the back of the head test and sure enough, hair between the thumb and the index finger.. but the funny thing is I mentioned it to the doctors this morning and she said, I looked good bald.. lol .. Oh well, the third time is a charm right..
White counts are the biggy. I've gotten 2 shots of neupogen and today I'll get another. My count today was 0.05 /mm3 which is actually up from 0.02 and 0.03 the past few days. That's good trend.
Doctor Wu and her PA came in today and the "D" word was used a couple of times.. no not diarrhea, but discharge. Cathy and Andy are here today.. Joni and Kayla are on the way. Peter, Holly and Annie will come out on Sunday..Jon and Sammy...maybe Saturday. Some staff are saying .. Oh I'm off later this week and you will probably not be here when I get back..
These are all very encouraging but I'd like a date please.. :-)
Also I just noticed today my hair is falling out yet again.. I can always tell because my mustache "feels sore".. Then I do the back of the head test and sure enough, hair between the thumb and the index finger.. but the funny thing is I mentioned it to the doctors this morning and she said, I looked good bald.. lol .. Oh well, the third time is a charm right..
Monday, March 25, 2013
BWH Day +2 (Sun.) and +3 (Mon.)
Yesterday was a relaxing day, No visitors, but I did have a Skype call with my mom and brother Joe. The rest of the day was truly a day of rest. I watched a couple of movies, MIB3 and Joyful Noise. I liked both movies.
I am still feeling well although last night I did notice that my throat is a little sore. Kinda like a lump in it. This is a known side effect of the chemo. The chemo effects rapid growing cells which includes the lining of the esophagus and intestine. Once my cells come back these symptoms will subside.
Today is day +3.... Was visited by a very nice PA student who was doing some clinical rotation. I agreed to him interviewing me and a physical examination. He was an EMT who went into a PA program.
Cathy is here today and we walked outside of the room around the 30 feet or so of the wing. It's funny to see the nurses I've only know with masks on, unveiled in the lights of the hallway. Marissa, Courtney and Shannon.. great servants to the sick. God bless them all. Had a nice shower, and who does not feel better after a shower.
WBC count is low.. 90 cells /mm3.. normal levels are like 3000 - 7000 cells/mm3, so yeah it's low !!
From what we are told, I have neupogen shots scheduled for Day +5 which will help boost the stem cells to produce cells. That will be Wednesday. So I am hoping to see counts start to go up this weekend..
I'll keep everyone informed.
I am still feeling well although last night I did notice that my throat is a little sore. Kinda like a lump in it. This is a known side effect of the chemo. The chemo effects rapid growing cells which includes the lining of the esophagus and intestine. Once my cells come back these symptoms will subside.
Today is day +3.... Was visited by a very nice PA student who was doing some clinical rotation. I agreed to him interviewing me and a physical examination. He was an EMT who went into a PA program.
Cathy is here today and we walked outside of the room around the 30 feet or so of the wing. It's funny to see the nurses I've only know with masks on, unveiled in the lights of the hallway. Marissa, Courtney and Shannon.. great servants to the sick. God bless them all. Had a nice shower, and who does not feel better after a shower.
WBC count is low.. 90 cells /mm3.. normal levels are like 3000 - 7000 cells/mm3, so yeah it's low !!
From what we are told, I have neupogen shots scheduled for Day +5 which will help boost the stem cells to produce cells. That will be Wednesday. So I am hoping to see counts start to go up this weekend..
I'll keep everyone informed.
Saturday, March 23, 2013
BWH - Day 0 - +1
As a transplant patient when you are admitted the days are counted don backwards from the date of your infusion.
As I told the nurse... oh it's like golf... -2,-1,0 (or par), +1,+2 etc..
So the past few days I did not blog because I was taking the chemo drugs. Those went in well but I did get sick once... They hype you up on fluids and you know the old saying.. what goes in must come out.. and be measured ...
Yesterday was Day 0.. Happy Birthday to me !!
My cells were infused around 12:30 yesterday, over about a 25 minute period. I took the infusion well.. So now we sit tight. My counts will drop and then rise again... hmmmm sounds familiar ??
Supportive care until discharge.
I'll be getting a cell count chart today from my nurse.. so I can keep track of them too..
One thing that is really funny ... I've had some real crazy dreams..
Here's a taste..
I was driving our old van south on 787 with Gandalf the grey following me on one of those spider motorcycles. and there was a storm coming in...Right by the olde D&H building a HUGE blast of wind hit the van I was in. I looked behind and saw Gandalf on his bike getting blow off the road by the wind... Then I woke up.
Weird huh ??
As I told the nurse... oh it's like golf... -2,-1,0 (or par), +1,+2 etc..
So the past few days I did not blog because I was taking the chemo drugs. Those went in well but I did get sick once... They hype you up on fluids and you know the old saying.. what goes in must come out.. and be measured ...
Yesterday was Day 0.. Happy Birthday to me !!
My cells were infused around 12:30 yesterday, over about a 25 minute period. I took the infusion well.. So now we sit tight. My counts will drop and then rise again... hmmmm sounds familiar ??
Supportive care until discharge.
I'll be getting a cell count chart today from my nurse.. so I can keep track of them too..
One thing that is really funny ... I've had some real crazy dreams..
Here's a taste..
I was driving our old van south on 787 with Gandalf the grey following me on one of those spider motorcycles. and there was a storm coming in...Right by the olde D&H building a HUGE blast of wind hit the van I was in. I looked behind and saw Gandalf on his bike getting blow off the road by the wind... Then I woke up.
Weird huh ??
Monday, March 18, 2013
Transplant - Day 2
Last night I did not get much sleep. Between the vitals needing to be taken, and the hanging of meds, and the occasional beeping alarm of the infusion pumps, yeah I kinda slept in 1-2 hr blocks.. Oh and the bathroom runs also.. lets not forget about the bathroom runs..
My mom and brother Joe stopped in today and spent the day with us. We had a nice masked visit.. Cathy has been great. Right by my side the whole time. I was also visited by the chaplain this afternoon. It was nice to chat with her and she prayed for me and my family.
Appetite is a little light but I think I'm actually eating a little too much 3 times a day...
But all and all I'm still hanging in there, strong just tired.
My mom and brother Joe stopped in today and spent the day with us. We had a nice masked visit.. Cathy has been great. Right by my side the whole time. I was also visited by the chaplain this afternoon. It was nice to chat with her and she prayed for me and my family.
Appetite is a little light but I think I'm actually eating a little too much 3 times a day...
But all and all I'm still hanging in there, strong just tired.
Sunday, March 17, 2013
Transplant.. day one..
Was admitted yesterday afternoon about 5pm. After a short stop on the 5th floor a room opened up on the 4th floor which is one of the stem cell wards. Cathy, Jon and Annie left before I moved down to the 4th floor. So it's like once you get into the room and the door is shut that's it.. you are isolated. Nursing folks come in with gowns, masks and gloves. I have a small fridge in the room but apparently they frown on stocking it with Sam Adams... Gee... I wonder why ?? The room is not near a street and that has good points and bad. It's quiet.. you do not hear any traffic or sirens as we did when we stayed at the hotel. Chemo will start today.. probably in a few hours if not sooner. Cathy will be here this week and although the solitude is good at times. It's good to have company. Expecting to get the Hickman covered up so I can get a shower and a better fitting pair of hospital scrubs on. Would also like to loose the hospital gown... they are just uncomfortable.. and way too hot for me. I do have temperature control of the room which is great because I do like a cooler room.. Hopefully a food menu will be coming in soon .. I wonder if I'll get a cup of coffee.. ???
Friday, March 15, 2013
Milestone 1 - NAILED !!!
Milestone 1: White cell boost, Stem cell harvest..
As I mentioned yesterday I spent the whole day on the pheresis machine. Came back to the hotel, ate dinner and by then I was pretty wiped. About 7:15 we got a call from my stem cell nurse. I needed 2 million cells to move forward and get admitted... I actually harvested 3.1 million. So we were cleared to come home today which we did after a decent night's sleep and a good breakfast. we were on the road no later than 9:30 and home just before noon. So I'm relaxing.. NOT reading work e-mails, and watching basketball with my kids. Saturday we will head back over to Boston for the admission and the long stretch. I figure with an extra million stem cells that might help my recovery a little huh ?? More tomorrow after I get admitted.. and I'll even post some pics, now that I know how to..lol...
As I mentioned yesterday I spent the whole day on the pheresis machine. Came back to the hotel, ate dinner and by then I was pretty wiped. About 7:15 we got a call from my stem cell nurse. I needed 2 million cells to move forward and get admitted... I actually harvested 3.1 million. So we were cleared to come home today which we did after a decent night's sleep and a good breakfast. we were on the road no later than 9:30 and home just before noon. So I'm relaxing.. NOT reading work e-mails, and watching basketball with my kids. Saturday we will head back over to Boston for the admission and the long stretch. I figure with an extra million stem cells that might help my recovery a little huh ?? More tomorrow after I get admitted.. and I'll even post some pics, now that I know how to..lol...
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