Finally! I am ready to get you an update. Since it has been a long time and A LOT has happened I will going to break it into many parts.
I will start with bullet outline of basically Nuts and bolts.
Then I will write something about feelings and details . I will break these up also. Could be rather chaotic but I hope it is entertaining. And I promise lots of grammar issues. I blame that on the chemo, half of obes stem cells, and steroids.
And again I know this should have come out a long time ago.
• Last PD1 End of Nov
• PET SCAN Dec 8.
• Left Moab on Dec 15. Moved into Sean and Mary’s that evening. They were not home which was kind of an odd feeling. Like a whole new beginning.
• Dec 16- Early morning surgery at LDS to place the line for all my chemo and such.
• Moved into the hospital that day.
• First couple of days of chemo were not to bad.
• Chemo Days 17-23
• Obe gave up the stem cells on Xmas eve.
• Best Christmas Gift ever!
• I felt great, even ate a giant burger Ari and Josh brought on the day I received his stem cells.
• The day you get your stem cells they call your birthday or day 0. (even though I had been there 7 days.
• Christmas was great with lots of friend visiting.
• I felt ok for about the next couple days. Lots of visitors, holidays are the time to be in the hospital because everyone is running through SLC then.
• Including a santa. (though my brother was bummed their was no Jazz bear who went to the huntsman instead)
• Did the last of the chemo on dec 28
• I had a mini break down on Jan 4th. I really needed rest from everything. My Family was great but sometimes I need space.
• I still had not really thought about how much harder it was going to get.
• Started to have side effect around Jan 30. Kindeys issues, too much water issue sucky food.
• It was a while ago so I can remember all the issue.
• No Sleep, more vomiting than normal.
• I also had a running headache that was rough
• Do not remember new years and not in the way I like.
• To be honest I do no remember a lot of this time frame.
• I had massive headache during this time frame.
• The Dr gave a lot of different drugs to battles this. Nothing worked really (except leaving)
• I did have the tv schedule memorized and I hate all insurance company commercials.
• I started to feel better around the jan 9
•I left E801 ( the LDS suite0 on Jan 11. )
• I still had a bit of a swollen are on my left arm.
• But I was drinking water and food pretty well. And no fevers in a while.
• Getting home allowed me to eat and drink much better. (still barely making 1000 calories)
-Best night of sleep in a month.
-14 pills in the am and 7 in the pm is very hard.
-Sore from walking more yesterday than I have in a month.
• I had the whole clan over for a while at Sean and AMrys.
• They are way over the top in how much they have opened up their house. • Could not have a better situation.
• I started a rash not too long after getting out.
• My left arm swelled way up! Club Boy for sure.
Back to it.
• It was nice to be out but I was not right.
• It only took 7 days to be reemitted.
• I had a high fever and very weak.
• They moved me to a new room that was way smaller ;(
• I have had a member of my family around since the beginning, but this was where I realized I did needed a caregiver.
• The family has been great.
• A rash started to grow on my body.
• They gave me steroid cream that made my skin burn.
• The gave started me on a lot of steroids overall.
• They had to stop the major GVHD immune suppressant because of complications.
• This left me (and still does) leave me rather open to chronic GVHD.
• The rash was acute GVHD which is not a bad thing…kind of.
• I had a bout of tiredness I cannot began to explain for two days probably around Jan 17. Hardly move.
• This is where I was probably more scared than I have even been.
• I had to sit down to brush my teeth.
• This second stay was HARD.
• I had MAJOR issues. The drs did not lead on at time but since 4 of the team member have expresses their concern with my condition.
• fix one issue had the potential to cause others.
• Kidneys had gone down hill and may need dialysis is the future.
• Started high dose steroids to combat GvhD • Had to stop all other GVHD drugs because of reactions.
• Lots of swollen parts. looked like the girl from Willy Wonka and the Chocolate factory.
• Went from 155 lbs to 210. (back to 160)
• They gave me a drug that made me pee every 10 minute and looked like dark grapes.
• Skin pealed like a snake. Gross and uncomfortable.
• Hard to talk to visitors
• Had to have a lot of test- lung test breathing, xrays
• I was on O2 for a while.
• Lots of drs coming by, kidney, lung PT,, BMT.
o Highlight of the lung test: the Dr answer his cell phone in the surgery room. Wanted to get off that Sunday and my test was taking longer then they had thought it would. (5 hours)
• There was a point I was not allowed to have more than a .5 liter for the day!
• Skin was super blotchy.
• I guess I looked bad.
• This is probably around Jan 20 on.
• I know there are more specific items but I cant think of them
• oh and the Boncos loss
• Bad days.
But not all bad:
• The Nurses saved me. The BEST nurse in the world Nurse LISA, brought in memory pad foam to help me sleep.
• There is a lot more I can go on about the great nurses at LDS and the the best one Lisa.
Getting out number 2
• I really started to turn around Jan 28th or so.
• I have been out of the hospital since feb 4. (wow and it is March 10th.)
• Things have been going well.
• Though every time I take a strong step forward I always have some bads news also.
• I was released on the condition that I would come to the hospital every day to see how my blood count were doing.
• The first couple of had out were hard physically and mentally. (I will go over later how screed I am to be free and so uncertain of what to do next.)
• Physically I have to walk up stairs to get to my room. Which at first was exhausting.
• Also my eye sight started to go blurry, and still does at point.
• A highlight was having my friend fly in from Portland, Texas and Moab. Really a nice pick up. Hospital
• A total of 45 days in the hospital now.
• A gross bill of $543,000 so far. Just hospital….dont want to think about the flights, hotel rooms, meals for my helpers, etc)
• I still go to the hospital every day.
• Take lots of pills. Two different infusions self giving.
• I am around day 81 now. The real reevaluations start at day 100.
My day goes:
• To the hospital around 9-10;
• Get labs.
• Wait 20 minutes to 60 minute to s see what my counts are.
• If to low transfuse, blood.
• Maybe do a test.
• If it Thursday meet with the dr.
• Meet with pharmacist to make sure the pills are rights.
• Get home from noon-3 depending on rest.
• Do SGRE marketing or watch tv, movie,
• Have insomnia. So lay in bed starting around 10. Watch Netflix.
• Cant read really well cause of my blurry eyes.
• Crazy cramps come on around 1. Last for 1-3 hours.
• Take a cocktail of pain pills.
• My hands also freeze up like arthritis. In crazy pain.
• Cant sleep so I go back to work.
• Or I get up and watch tv and eat cherries.