Wednesday, April 30, 2014

Day 52 - Not much happening

These past few days, Tony continues to lose weight.  Actually, he's up then down.  Up, then down.  He is thinner than the day we got married.  (30 years ago this week-WOW)
Appetite is still not normal.
Food is not tasting right.
His stomach is doing odd things.  We had been given a kit for stool testing a while back, so today he sent in a sample.  We shall see what those results show.  I'm wondering if he still has C-Diff.
Drinking is minimal.  I'm trying everything.  Lately, I'm forcing Boost energy drinks just so he can get some calories and vitamins in.  Better than nothing.
He has begun to make the odd appearance at the office.  Not really working.  Cannot stay focused for very long.  He began driving on his own on April 21.
Tomorrow, he will be making a trip to Princess Margaret Hospital on his own.  First time ever.  I'm nervous. Downtown driving can be a parking lot.  I hope he can stay focused long enough to get back home safely.
He is getting an x-ray and his bone strengthening medication.  Appointment with the oncologist is next week, I believe.
My life has been overwhelming lately.  Trying to play "catch up" with everything on my plate.
One day at a time.

HEY!  Have you registered or donated to the Walk yet?
Find a walkers name and help support us!

Sunday, April 20, 2014

Happy Easter to all our family & friends

As I type, Easter is over.
It was a great break.  Tony is eating more.  Actually enjoyed eating.  Actually, he woke up saying he was hungry.  Very good sign.  His taste buds are finally waking up!
He walked quite a bit on Saturday and felt ok the next day.  It's a very good sign.
May 8th is his next follow up appointment with his oncologist.
May 15th they are doing a CT scan.  I'm not worried.  I'm sure any speckle is completely gone.  I guess this will be their new baseline for future CT scans.

I've begun to fund raise!
I'm hoping that those who have committed to the walk are going to pull up their sleeves and help raise lots of money for this horrible disease.
Those who wish to join the walk----HURRY UP AND SIGN UP!  Message me if you need help.
This Wednesday evening the team leaders are meeting to learn more about the walk.  I guess that's when the teams really begin to reach their goal.
So, if you haven't already joined or donated, please do so now.  Below is our team page.  GEMM Team.
Click on "join team" or "donate" or "register".  We are $10 away from being in 2nd place!
Thanks for following everyone!
Buona Pasqua a tutti!


Tuesday, April 15, 2014

Minor Setback

Dinner last night did not sit well with Tony.  He continues to lose weight (4 more pounds) and not eating and not drinking.  I'm home all day with him to enforce eating and drinking.
I am very frustrated and I can only imagine how he feels :(

Sunday, April 13, 2014

Been very busy

I've been very busy and haven't had a chance to myself at all these past 7 days.
I am at the office, on a Sunday, at 7:30pm.  YUP

Tony's follow up appointment last Thursday went well.  We had to depend on a friend to drive him downtown.  His hemoglobin was at 98.  He was reminded again about how close he was to being removed from the stem cell transplant list.  Miracles do happen.  We need to believe.  Compared to where he was back in August to today, yes, he is a miracle.
He has lost a lot of weight.  He is down about 45 pounds now from being diagnosed.  His appetite is still challenging.  We are short staffed at work, so I haven't been home much, therefore, no one is there to push him to eat or drink.  He says he drinks and barely eats......
His next follow up appointment is in 30 days.  At that time, or around that time, they will be doing a full body CT scan to record a base towards future scans.
He is beginning his next routine.....back on the Revlimed.  I believe 10mg.  We shall see how that contributes towards his neuropathy (numbness)  He still has it on one leg (right side) and both feet around the toes.

Thursday, April 3, 2014

Day 25 post Stem Cell Transplant

Today was a hectic day at Princess Margaret for Tony.
Main Floor for blood work.
4th Floor clinic for Bone strengthening medication via IV.
Down to 2nd floor to see Dr. Chen.
Back up to clinic on 4th to get hooked up.
Back down to see Dr. Chen again.
Down the hall to see the hospital dentist for a checkup.
Back up to 4th floor to get disconnected.
WOW.  Let me tell you that by the end of the day (7 hours) Tony was very fatigued.  Lots of walking and talking and sitting.
Results from his blood work at Headwaters Hospital showed all negative.
Results from his hickman line taken out Monday showed negative.
Um, what is going on?  In the meantime, he continues taking the antibiotics.  Last night his temperature hit 38.3.  Still low grade.  They did more blood work.

GREAT news:  He ate LOTS at dinner tonight!  Good sign.  Ribs, potatoes, carrots & salad.  When I cut open the watermelon after dinner, it smelled like summer.  It was delicious and he ate quite a few slices.  A substantial amount considering his appetite has been a bite here and a bite there.  Things are looking up.

-We ran into the wife of his roommate from the first stem cell transplant from December.  She was telling us that her husband is doing much better.  He hired a personal trainer to help get some of his muscles and energy back.  Tony was glad to hear that.
-We found a dime on the floor while waiting for the doctor.  A sign that an angel is with you.  (Google it.  It's true)  So I loudly said hi to my mom and Uncle Tony.
-We ran into someone we met at our MM support group meeting.  His wife was getting her cells harvested today.
-We ran into someone ringing that bell.  You know, the one that tells everyone you just finished your chemo treatment.  She was bald and beautiful. She rang that bell VERY LOUD.  I'm sure everyone heard it throughout those halls.  And, she was there with about 8-10 people supporting her.  I offered to take group shots of them all together.  I had tears in my eyes.  It was wonderful.
-We met a couple who looked so tired today.  I asked what they were there for:  testicular cancer.  A young man.  A caring woman by his side.  Both testicles removed and going through radiation.  He is allergic to the radiation, so they are dealing with that today.
So, at the end of the day, sometimes, when you think you have it bad.......maybe you don't.
Sometimes, we need little reminders to enjoy life.  Take it slow.  Breath it in.  Watch for those dimes!

Tuesday, April 1, 2014

Day 23 post stem cell transplant

Today, he is finally saying, food is starting to taste better.....not the same, but better.
I will take that!
Drinking, still not happening.  Hydration with Home Care continues.
I needed to record this date.
Moving forward, it can only get better.