Day 64 post stem cell transplant.

Well, it’s been a very stressful few weeks.  In fact, I really didn’t feel like blogging……
I thank you all for inquiring about Tony’s status during these past 12 days. It warms our hearts to hear from you all.  It truly does.

Since my last blog, Tony’s diarrhea continued and he just kept losing weight.  His lowest weight was 200.5 lbs.  He looks very weak and just can’t hold anything in.  We didn’t get a call from the hospital with regards to his stool sample, so we assumed c-diff was negative.

May 8th we saw his oncologist at Princess Margaret.  She shared with us that they received a verbal confirmation that Tony’s stool sample was positive for C-Diff…..which explains the diarrhea, loss of appetite and continued weakness.  His left hip has been an ongoing issue.  He walks like a senior.  This is from over doing it.  Too much walking.  The x-rays didn’t show any breakage which is good.  Blood work came back good.  Immunity and all other numbers are in the normal range.  Except hemoglobin-still in the 90’s, which is ok for myeloma patients.

The oncologist has put him back on chemo:
15mg of Revilimed – on for 21 days, off for 7 days.
20mg of dexamethazone (steriods) once a week.
Valcade injection weekly.

Plus he is taking 4mg hydromorphin for his hip pain.  Every 2-3 hours.  Last night was a rough night with the pain. I applied some ice cold cream to the area and it seemed to help for a few hours.  But he was awake around 4am complaining from the pain.  As I type, he sits beside me, saying that the other hip has begun to hurt.  Perhaps he’s favouring his other leg too much?  Never ends with Tony.  Something new – always.

Tony is upset with this combination as he feels it fatigues him.  The steroids will cause 2 sleepless nights.  However, he began on Saturday morning and slept pretty good Saturday night!
Not looking forward to the weekly injections.  This means an all day event back at Humber River Hospital.

Today we visited his urologist.  This is a follow up to those neuphrostomy tubes in his kidneys.  Remember those?  Well, they need to be removed within 6 months. (it’s been longer due to Stem Cell Transplant recovery time)  If waiting too long, they become more difficult to remove.  She has decided to put him under to remove in case she needs to operate to remove them.  That happens on May 29.  Again, Tony continues to keep me busy.

This Thursday we meet his original Dr.K. from Humber River.  I look forward to seeing her.  We both do! She was sooooo nice.  So positive.  She went on maternity leave.  When she left, Tony’s health just spiraled downward.   She will be monitoring the weekly valcade injection.  Closer to home, which is better.  Afterwards we head downtown to Princess Margaret Hospital for his CT scan. This will be his new base for any future findings.  This should tell us the success of the stem cell transplants and treatment.  This is to ensure that his lymph-nodes are back to normal and tumors are completely gone.

This coming June 22, 2014,  Princess Margaret Hospital is hosting a walk.  I plan on joining many supporters and warriors fighting this terrible disease.  I’m asking for your support during this event, either by walking with me or donating to this cause.  Princess Margaret Hospital has been my saving grace.  
My strength to continue on wards is still there. 
My hope to find a cure is even greater. 
The scientists and doctors are truly working very hard to find this cure.  At best, I would be happy with a treatment to simply make this disease a chronic battle and not the alternative. So, please find it in your heart to give to a personal worthy cause.
Please visit:

My team name is:  GEMM Team  
Tony & Mary