Wednesday, March 17, 2010

dealing with the uncomfortable stuff

well it's the end of day 5 and the last couple days have been a challenge. most of my time been spend dealing with two words that start with p or if you are the less graphic type words that start with d and v. Anyway those little discomforts were expected and will last a few days. i gotta say the last time i vomited as much as yesterday was many years ago and involved irish whiskey and firefighters.

anyway my blood counts continue to drop and will until about day 10 so then things begin to improve. my weight has dropped a little from low fluid and barfing so i now get 2 liters of iv fluid a day at how. still better then the hospital. at home i sleep next to my care giver. in addition to fluid my red cells and crit were low so yesterday and today i got some fresh red stuff. my whites are low enough that i am now on super high dose antibiotics and need to stay out of the germ filled world as much as possible. my platelets are not yet low enough for platelets but the soon will be.

Other than feeling like crap today was a happy st paddy's day. i still have my red hair chrystal cooked a corned beef. i had a little slice and we froze the rest for a day when i can enjoy with a guiness. Guiness has to wait for immune system rebound. I only get pasteurized beer.

finally yesterday my loving wife cared for me and cleaned up after me on her birthday. we had planned pizza and a movie At home but sometimes stuff happens. I felt guilty all day because i couldn't do for her, but at least i wished her a happy birthday first thing in the morning. the Lord has blessed me with her.

Sunday, March 14, 2010

Day Zero Big Success

Friday was a long but successful day. Because of by kidney's I go an hour in between each bag of cells. there are 4 bags of cells..2 hrs of hydration first, and 4 hours hydration at the end you do the math. Bottom line we checked in at 0730 hours and out at 1945 hrs.I got a prize of a little extra fluid cause my blood pressure was a little on the low side.

just prior to giving a bag of cells i got some drugs for nausea and possible allergic reaction. just like clock work I go a tickle in my throat and nausea. good thing the drug was there. One interesting side note, remember the controversial pain med from a few years back called DMSO? that is what the store stem cells in when they are frozen in liquid nitrogen.

day 1 and 2 have not been with out challenges. my gi tract seems to be confused about bodily so I am still dealing with outhouse trots and a little vomit. Hope this isn't TMI as the kids say.

Today when i went to clinic my pressure was low again so Chrystal has me hooked to the fluid pump. I wounder if these bags come with wine in them?

anyway it's all in a days work toward recovery. i will have good and bad days but once engrafting happens it is all good.

Bless you all.

Thursday, March 11, 2010

a day of rest, so I did

Yesterday, Wednesday was chemo day. We had an early start at 7:30 a.m. first blood draw then hydration and anti nausea meds. the chemo it self was a pretty short part of the day. then more hydration. before going home Chrystal was trained on the use of the portable pump so i could get fluids at home. So, I carried my liter bota bag home and spent the next several hours getting fluid. Oh I forgot the ice chips...30 minutes before my chemo went on and for 6 hours after I sucked on I chips to freeze the inside of my mouth. research at SCCA has shown that this reduces mouth sores from the chemo.

Speaking of side effects, things are tolerable so far. Had a little bout with the back door trots yesterday but that has calmed for now. The anti nausea med seem to be doing their job for now.

Today, we went in for a blood draw and check up on the day of rest. all of my blood counts continue to be good, with some encouraging news on kidney function. I have been off dialysis now for 2 weeks and my kidneys have improved. My creatinin is at 2.5.

the rest of today i layed low and took a couple naps. napping makes the nausea better. :)

Tomorrow is the big day starting at 7:30 a.m. and we will be there for 12 hours.

Monday, March 8, 2010

Dr Bensinger thinks I am nuts.

Today we went through the the next few weeks in great detail. Dr Bensinger went over the chemo treatment telling me why my dose was one day instead of two. Because of my kidneys he did not want to risk loading in with "toxic stuff". Then he talked about how they would give me back my cells over a longer period of time on friday again to protect kidneys. I'll get lots of extra fluids in order to "flush" the uneeded "blood garbage" through the kidneys. those are the doc's words not mine.

We went over each med and all the sideaffects in great detail ncluding what to expected at my low point next week when my blood counts are zero. and then how i would improve.

After all the explaination he asked me if I was ready and I said, "it sounds like a holiday, let's go." he and the gold team nurse about fell out of thier chairs at my sick humor. Chrystal just shook her head.

it's officially a go!

Sunday, March 7, 2010

a weekend to relax sort of

I have cancer, I've been through chemo, had more needles than any on person deserves, been on dialysis, been poked, prodded and examined, but what causes the most stress of all? My dental appointment!! Friday we went to the U of W to have what was left of a broken tooth pulled. It needed to be done last spring, but I got multiple myeloma along the way and my world changed. So, I sat like a big boy while the dentist chipped and chiseled until he got the roots out, using only a local. The dentist was good and a funny guy but he will never be my friend because he is a dentist.

Sat i had only had to go down and get my blood drawn and Sunday we had no appointments, so it was a weekend of hanging out with my sweetheart and catching up on rest. also doing some planning to get the house ready for post transplant recovery time. Sunday we had Princess Trinity here so her mommy could deal with some health problems.

Things are going quite well with Chrystal flushing the hickman and doing dressing changes. She is a first class health care provider. It is a good thing we have so much love for each other, cause we are discovering that routines need to change. I am slow to change, but she approaches it with grace and love and things work out.

She is an amazing woman to be managing this stubborn redhead. I try hard not to be cranky pants. :) It is not always easy to literally place your life in the hands of others, but I know God has surrounded me with people to care for me.

Thursday, March 4, 2010

short day not much to say

today was the first of 4 days of lab draws and that's about all. the stem cells are collected and the plan is in place for me to see my Doc on Monday, but first i have a tooth getting pulled tomorrow,then daily lab draws over the weekend to make sure my red, white and platelets are bouncing back ok. Chrystal is all signed off on flushing my lines and changing dressings. I got a different dressing today to try to speed heeling a little.

Unless something changes, next wed and thursday are the chemo days and friday is day ZERO! Yippie! The day we have been waiting for.

I may not blog the next few days because action will be slow and i need some quiet quality time with Chrystal before things start getting intersting.

Wednesday, March 3, 2010

Cells are collected

Woo Hoo! cell collection was a great success, so i will stop whining about the "Bone Pain". Today I collected 6.7 million stem cells for a total of 12 million. I only needed 10, so unlike the county and state budget, I have a surplus. I have already signed up to give some to the Hutch for research to help others down the road. I wonder what they will learn from studying the stem cells of a crazy guy like me.

Took a little nap this afternoon and then went see my union brothers and sisters down at the union meeting Shoreline. it was good for Chrystal and I both to have that time to "do our own thing".

Tomorrow, and for the next few days i have daily blood draws to see how things are. my platlets were a little low today, but that is normal and they will bounce back.

Tuesday, March 2, 2010

the "Bone Pain" was worth it!

first day of stem cell collection was a huge success. The goal is to collect 10million cells. we got 5.6 million today, so if all goes well we only collect tomorrow. cell collection is a lot like dialysis, you are a 4 hour ride to nowhere. as usual the staff was great. the rooms are private and we have the same nurse the whole time. Dr Bensinger came by to say my numbers were awesome and cell count was higher than typical. That was pretty exciting. so all that pain i had was worth it because once again my body beat the average. So far the platlets are good which means no transfusions for now.

If all goes well we are on track to have day Zero be the end of next week. Day Zero is transplant day. first i have a tooth that the dr wants pulled to reduce infection risk. Than happens friday, then they need to let it heal for 4 or 5 days. after that 2 days of scorched earth chemo then the transplant. woo hoo!

stay tuned for the wild irishman in a pony tail pic to be posted. once the chemo happens who knows what will happen to my hair. Chrystal is making me some designer doo rags, just in case i go bald.

All of my treatment so far is out patient and will continue out patient unless i get an infection or something.

Thanks again for all your support. together with Gods help we are winning.

Monday, March 1, 2010

cells growing like dandilions

the growth factor shots are going well. today was day 3 and tomorrow at 7:30 am we go on the machine to to collect cells. today my cell count was so good they almost decided to collect today. it is an interesting process, the shots don't hurt but the side affect "bone pain" sucks. and i haven't grown an inch. so when i ask the nurse what is "bone pain" she responded by saying it is like the pain you have when you work out too hard or an achy flu pain, then she added how you feel after the first long motorcycle after a long winter. Chrystal laughed out loud. anyway it is more like how you feel after fighting the biggest fire job of your, humping hose for hours. I have never gotten to a 10 with back pain until last night. the pain is mostly in the large flat bones because that is where all the marrow is.

shortly after my kids left i had a small low back ache in my hips and lumbar...soon after it radiated up from my butt to my neck and shoulders, then the pain started in my sternum and ribs....was not continues off and on, but we are managing it with VICODIN.

Oh well pain is weekness leaving your body and in the end it is helping me kick myeloma's butt.

Thanks for all your prayers and well wishes. God has blessed us and has his healing hands on me.

Chrystal is a rock star,I have been a little grumpy, but she continues to care for me and makes sure I am comfortable. I am blessed she loves me so.