Thursday, May 29, 2014

Two very busy days

Let's start with yesterday and finish with a very very funny story.  Because when you have cancer, you have to laugh.  You need that tension released.

At the hospital for 8am.  I AM NOT A MORNING PERSON!!!!!!!  AND I DRIVE ALL THE TIME!!! LOL  We got Tony registered for his CT biopsy.  It was supposed to happen at 9:45am.  We also had an 10:30 appointment with his oncologist who knew we'd be in radiology and would be late for the appointment.  The problem is that blood work takes 1 hour for results.  Then the doctor sees you with the results and then orders the chemo based on those numbers. We asked radiology if we could sneak away and get blood work done so we'd have a head start.  They let us go!  It was the look on Tony's face.  So off we went.  When we got back the timing was good.  They took him inside the CT scan room for the biopsy. But once inside, they realized the CT Scan wouldn't work with this and they said an ultrasound biopsy would be better.  So we waited.  And waited. And waited.  Around 12:15 they took him back and did the biopsy. They all think it's an abscess.  These are doctors aren't they?  Radiologists?  They perform biopsies.  Doctors right?  Opinions..... He had to stay in a bed for one hour so they wheeled him upstairs for his appointment.  No room in this clinic for a bed.  So in the hallway we stayed.  Our oncology appointment was in the hallway :(
Didn't feel right discussing his situation with people walking by.  Anyways, I guess you need to make the best of situations in this case.  He was told that the CT scan performed 2 weeks ago showed the disease is progressing.  She feels that it is another tumor and not an abscess.  I just don't get it how they all see the same CT scan and read it differently.  The biopsy will tell all.  We will get those results on Wednesday's appointment.  His hemoglobin increased to 93 which is good.  His weight continues to drop.  Yesterday he was at 193 lbs.  I've never known him at this weight.  He is very skinny and fragile.  He received his Valcade injection and off we went. He required a wheel chair for most of the day.
He wanted to make an appearance at work and see the employees.  It was a nice meeting.  He stayed in the showroom while employees came in to chat with him.  I could tell that he misses work and not the stress that goes with it.

Back at the hospital for 10am to remove his nephrostomy tubes with urologist.  Everything went as planned.  They decided to replace rather than remove.  As he has some activity going on in the abdominal area, they may come in handy.  Better this than be in an emergency situation and put them back in from the mid back into the kidneys.  He had two tiny incisions when they went in. They are good in your body for 6 months.  After the procedure the doctor spoke to me.  They slid out easily.  No complications.  NICE!  When they allowed me to see him after recovery, he had a weird look on his face. His hand ventured downward and did an adjustment.  (lol)  They would only release him after he passed urine.  Afterwards, all good and they said he could go home.  I had to assist him with dressing.  Then I thought I should check out the bandages before leaving so I could see if any additional bleeding would happen while in my care.  He turned.  I looked.  No bandages.  I looked everywhere.  Nothing.  What the heck!  The nurse overheard us behind the drapes.  Opens them up and looks concerned.  "did you do wrong procedure on him?  What did you guys do to him?", I asked.  She explains that there shouldn't be any incisions.......OMG!  Can you put 2 and 2 together readers?  I started laughing.  Tony started laughing.  No wonder he felt "violated" post the procedure......LOL  LOL  To the men reading this, I hope you don't get queasy.  Find comfort in knowing that it happened to Tony and not you!
After this appointment, we had to go to the clinic to meet with a pain management doctor.  Tony is experiencing pain in leg and numbness on thigh and feet.  That's a side effect of one of the chemo's he's taking.  On a scale of 1-10, he feels the tolerance is at 5 this week.  He hasn't taken any additional pain killers.  But, his fatigue and lack of energy is overpowering.  He's not eating though.  Also, his blood pressure is quite low.  So, this doctor prescribed ritilin.  Taken as an adult it gives you energy.  My my old man is taking stuff given to high energy children.
No wheelchairs today.  He walked.

GEMM Team is in 3rd place again, sitting at $12,095 raised!  Let's go team!  Please spread the word.

Thursday, May 22, 2014

Back on the Myeloma roller coaster ride

Someone, please, give me the strength to get through the next couple of weeks.
Today was a heavy day.  No one is saying it, but we suspect the transplants were a failure but they won't really say until 100 days post transplant.  Hemoglobin has dropped to 83.  (transfusion happens below 80)
We have a few issues to clear up.
First, his nephrostomy tubes will be removed next week.
Second, another CT scan has been ordered.  This morning while showering, Tony noticed one thigh larger than the other.  Another plasmacytoma?
Third, he has a lump the size of a toonie on his left abdominal area. I felt this last Friday morning. The doctor suspects either the nephrostomy tube has shifted or tumor or an abscess. They did an ultrasound and this afternoon, she called us with the results.  She says with his aggressive tendencies to this disease, she needs to assume the worst and hope for the best.  She feels based on the results, it looks like it's myeloma related. So, she will be scheduling a biopsy of this lump ASAP.
Fourth, his teeth keeps getting food stuck in them.  She recommends he see the oncology dentist again to assess what's going on.  He was just there a few weeks back.


One day at a time.
Lots of appointments next week.  Hopefully, sooner rather than later.  We knew it would be a roller coaster ride with this disease, but this is getting ridiculous!  I am very frustrated.  SERIOUSLY!

I asked her about all the fuss about that Measles vaccine...."the cure to cancer".  She says it will be many years before it could be here.  Lots of testing still to do.  With that, she actually said we could go to the United States.........I look forward to hearing directly from Dr. Chen at PMH and Dr. Reece.  Dr. Reece comes from the Mayo clinic in New York.  Toronto is very blessed to have her as well as Dr. Tiederman. We shall see.  I'm feeling very anxious as Humber just brings back those awful memories from back in August and feels like we're heading in that direction again.

On a brighter note, the GEMM Team is sitting at $8,260 total raised tonight!
The entire event so far is sitting at $208,600.  WOW!!!!!
Keep it coming everyone!

Tuesday, May 20, 2014

Latest news

I, the caregiver, have been stressed.  Last week was a bad week.  Lots happened.  So much so that I truly didn't feel like talking about Tony or anything.  This past weekend was a relaxing one spent up north.  Tony got some sunshine and even got lots of social time with the baseball team.  He is growing beard & chest hair. It almost felt normal.....

Last week:
It was Tony's first trip back to Humber River Hospital since September 2013.  I was getting anxious, for a number of reasons.  Memories of his one month hospital stay.  Memories of bad news.  Memories of long long days spent by his side.  Memories of chest pain for me.  ugh!
I dropped him off at the front door and he walked in alone while I parked.  On his way up in the elevator, he met his original oncologist-the one that left for maternity leave back in March 2013.  The one who said he would be fine.  The one we enjoyed seeing.  She was glad to see him.
And then he met the doctor who cared for him during those bad times.  She actually gave him a hug and was sincere about seeing him again.
And then the nurses and staff....OMG they are sooooooo nice.  Since he walked in without me, they asked him where his wife was.  That's nice.  They all came up to him and asked how he was doing.  Saying he looked great.  (he lost a lot of weight-looks very frail) but they all said he looked great.  He had a great smile on his face.
And then we met a fellow multiple myeloma patient.  Someone we met on his first visit when told he had MM.  His wife was there as well.  Tony and Paul have been texting and phoning each other since then and hadn't seen each other since October 2012.  It was great seeing them and chatting.  It actually made our morning go by faster.
They did his blood work, etc.  Then we went to see Dr. K.  She got caught up with all of Princess Margaret's progress.  She seemed good about his progress.  He is to continue on with Dex, valcade and Revlimed.  The valcade is a weekly injection, so follow up again is every Thursday at this location.

Friday we received a fax with very detailed reports from everything.  Something we requested.  Something I didn't expect to see. I had to read them twice!  I wasn't sure if I read them right, but I did.......
His Myeloma Protein number was climbing.  Here's a history and you judge:
57.7 October 2012 when Diagnosed
 2.9 December 12, 2013 after the last D-pace treatment
 4.6 Feb 2014, after first transplant.
 5.8 March 2014, just before second transplant.
 2.9 April 2014, just after second transplant.
 5.9 May 2014  ?????????
This number, from what I remember should be zero......  His IgG is at 17.8 (63.2 when diagnosed)
This Thursday's appointment cannot come soon enough!!!!!  I need answers. I know it's not a huge climb, but it is a climb.  Blogs we follow say that these numbers fluctuate and that's why they wait for 100 days post transplant to reassess your situation.  I'm trying to not dwell on this but.........I'm very hopeful knowing that there are more options and treatments available for him.  It just pains me to see him struggling with getting dressed and doing daily activities that many take for granted.
Also, today, I felt a cyst like something on his left abdominal area.  What gives me courage is that the other tumors didn't feel like this one.  It is about 1".

He was back at Humber for his pre-op appointment.  He drove himself and parked and everything! WoooHoo!  Without me. This is just a routine appointment for his procedure coming up to remove the two nephrostomy tubes near the end of the month.

Well, the GEMM Team is currently sitting at $7,095 funds raised and still counting!  That is great news!  I'm still trying to find time to solicit people.  So, if you haven't heard from me yet, you will fellow readers!
Here's the team page.  Look for a name you know and sponsor that person.  PLEASE....I need your help. Princess Margaret needs your help.

You will see our team page in the top teams at the bottom right hand side of the site. Click on the GEMM Team and follow our progress!

Monday, May 12, 2014

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