My husband, "the luckiest man in the world"

We have been truly blessed these past two days.  We have had tremendous support from family & friends.  I am finding my strength in this love.  Tony has been brave, courageous, funny & complimentary.  He has been having great conversations with everyone who comes to see him.  Telling many stories, making each and every one feel special.  Every text I receive from people asking if they can come.....I ask Tony and he looks at me saying ya!  Let them come!  He is definitely putting on the charm and grace with everyone.  Some very strong and others not so strong.  But that's ok.  Everyone handles these situations differently.  Two years ago, I would have been part those not so strong. We have been having many bonding moments and making special moments. Life is so precious.  Perhaps moments like these make us realize just how short life is on earth.  Both Tony and I are so proud of our two sons.  They each have a piece of their dad and I know that moving forward, Tony will be living through them.  Shining through them.
I would like to give a special thank you to my night crew because if it weren't for them, I would not be getting my rest to go another day.  I love and appreciate all that they're doing.
Although Tony is getting much weaker, he is still accepting visitors.  However, please text me on Tuesday, before heading down.  We would love to transfer him to another unit that deal with palliative care.  I just don't know when that will happen.
May God bless you all.
Mary

I truly did not think I'd hear those words today...

This week has been full of a battery of tests (again) in order for the qualifying process for a clinical trial.  He really needed this to happen.  Unfortunately, his health has taken a really bad turn.  His myeloma numbers have excelled tremendously over the past 4 days.  His kidney function continues to get worse.  His legs and feet are very swollen.  His spirit continues to be very loving and sweet and brave.
Today, I believe may just be the saddest day of my life.
Today, we received the bad news.  The team of doctors feel that chemo will do more harm at this stage than good.  He is not healthy enough to go through chemo therapy.  This news came from the very highest head at PMH.  She comes with 30 years experience in the USA and Canada with multiple myeloma.
We discussed palliative care moving forward and making him as comfortable as possible.
He currently has no pain.  PMH doesn't have any beds available.  Toronto General Hospital was on bed alert.  That left us with Mount Sinai.  I don't know how she did it, but the process is to check into emergency and wait to be admitted.  Like I said, I don't know how she did it, but within 30 minutes we were in a private room in emergency.  This evening he will be transferred to a private room.
He is accepting visitors for now, but I ask that you text me before coming should things worsen and he changes his mind please.  We were tremendously supported on the Multiple Myeloma walk this past weekend.  We hang on to that love from each and every one of you.
Please respect the fact that his parents and my dad still don't know, but we plan on telling them this weekend.
We find strength knowing that we are loved.  We have no regrets.  We have many friends and family supporting us either way.  Please respect our choice to ignore calls if we have to during this difficult time. Text messages work best.
We will keep you posted as best we can.......

I'd like to share something given to me personally at the end of the walk.  It came from a wonderful woman, lovely inside and out.  She gives me strength.  I find comfort just hearing her voice.  She was diagnosed with two cancers in one day.  She walked 5k this past weekend, on her own.

This plaque read:
"You never know how strong you are until being strong is the only choice you have."
I have this on my fireplace at home and every day I read it.
Munira, may God bless you forever and ever and keep you safe.
With much love to everyone,
Mary

The latest with Tony's health

He continues to be getting weaker.  Tumors in abdominal area keep growing.  He has zero pain, which is a relief.  I help him with all his daily routines now.  He is experiencing shortness of breath.
Yesterday, we had his MRI booked to qualify for his clinical trial.  Unfortunately, because they weren't confident about him going in for the test due to his tubes, they decided it wasn't safe.  By the time we got an answer, it was the next person's test.  However, luckily, oncology was quick to schedule a CT of his head and also check up on his tumors in abdominal area.  They also did blood work, ECG and a chest x-ray to eliminate possible fluid in his lungs.
The CT scan showed the tumors progressing.  It also showed one on his kidney.  The technician's comments says it is not interfering with passing urine.
Blood work:  Hemoglobin was at 76.  They are giving him 2 units of blood this afternoon.
                     Platelets were at 26.  He may need an infusion this week.  Still not low, but declining.
                     Creatinine was at 200.  Getting higher, not a good number.
So, they have hinted that perhaps he will be considered a level 2 in his health.  They are only accepting level 1.  So, what is the alternative?  Not happy with what they are hinting at.  We are still remaining positive in all this.  The plan is still to start him on chemo this Monday unless he gets declined.  This trial, we are told, are not strict, so here's to praying they bend their rules and allow him a treatment.  They are trying their hardest to get him help.

Keep praying for success everyone!

Last Sunday's Walk for Multiple Myeloma

On behalf of my family, we would like to thank each and every one of you who walked with us on Sunday, June 22. And another thank you to those that contributed towards this cause so close to our hearts. The timing for this amazing day couldn't be any better. Not a cloud in the sky and the temperature was perfect for a walk.  Although Tony is not feeling the greatest, my trooper of a husband wouldn't miss this day for the world. After our team photo, his speech to everyone moved us all. His reference to Lou Gehrig during his battle with cancer, referring to his words back then, how Lou Gehrig said he was the luckiest man in the world. Tony couldn't see it then. But, on Sunday, with tears in his eyes and a choke in his voice, he told us all how lucky he was, and knew it, meant it, realized it. Yes, we are truly lucky to have so many friends and wonderful cousins, extended family, a brother and sister and their spouses who really aren't considered "inlaws". And of course, our new Multiple Myeloma friends, caregivers, doctors and the entire oncology staff at Princess Margaret Hospital. Our team, GEMM Team, (82 + walkers) collectively raised $31,133 to date as I type and still counting. The entire Multiple Myeloma group raised over $540,000 and still counting. Way to go everyone!!! 
From Tony, Michael, Robert and myself, with lots of love, we thank you for all your support.

PMH has another plan

On Thursday, I awoke extremely anxious, as you can imagine.  I needed answers.  We needed answers.  The entire drive down to the hospital (a 2 hour drive) Tony was experiencing lots of acid.  He drank a cup of water with his breakfast.  By the time we got to PMH, he was in need of a tums.  While we were in the waiting room to see his oncologist, he said to me that he felt like throwing up.  I didn't have time to respond because it just came up.  All over the floor.  Nothing to catch it in.  The staff helped, but it was too late.  Luckily, they gave him a room with a bed to lay in and rest.  THAT CAME OUT OF NOWHERE!  

The girl in charge of the clinical trials came in first to see us.  She was extremely apologetic for the clinical trial application not being accepted.  The reason was due to his treatment (valcade) back when diagnosed. He has exhausted this chemo drug and that disqualified him from this trial :(  She was genuinely upset for us.  

So, we waited for more information from the oncologist.  When she came in, she sounded hopeful for another clinical trial.  It's called KPT-330.  A chemo that attacks the cancer cells a different way.  It is an oral medication.  Commitment as far as travelling is less than the other one.  It is used for patients with Multiple Myeloma and Non-Hodgkins' Lymphoma, Leukemia types as well as others.  Sounds hopeful.  As one friend shared with me....things happen for a reason.  Perhaps we were declined because this is a better one.  This drug is not yet approved in Canada or USA.  This chemo causes nausea, diarrhea, vomiting and weight loss.  But, they will be giving him pills to combat those symptoms.  His creatinin numbers continue to climb the wrong way.....The bone marrow test last week shows the myeloma is doing good, but those tumors continue to grow.  They are recommending a picc line for easy access for medicine & hydration.  He was told by oncologist to force drinking and eating food because this will kill his appetite.  Daily hydration via IV may be a must.  Actually, he is showing dehydration signs now so she ordered home care to do daily visits for the next 7 days.  These clinical trials have a qualifying process.  He needs to have an MRI of his brain, eye exam and I think an Ecogram.  As of today, still no call for appointment times :( Even the doctor wouldn't guess at how long this would all take. Meanwhile, he is on week 3 with no treatment.  One other concern was his platelets need to be over 75.  Thursday, he was in the 60's......Anyone know how to naturally increase this?  They won't give him a platelet infusion.  

He was sent to get hydrated via IV in the afternoon.

Afterwards, we went to the 7th floor to help the Myeloma 5km Walk get organized.  I helped them while Tony lay down on a bench in the room.  He was comfortable for a bit.  When I felt he had had enough, I gathered 82 hats, t-shirts, bibs & information sheets and packed them up and someone helped us carry them to my car downstairs.  We drove to visit his mom to wait out the rush hour traffic and relax.  At the table, he got sick again.......My heart aches watching him go thru this.  He didn't want food all day long.

This morning, he decided to stop taking the ridilin.  He was told it would suppress appetite and didn't take any today.  I was with him all day and every couple of hours was looking for food.  It's a good sign.  Was it because he had nothing to eat yesterday?  Was it because he stopped the ridilin?  I wonder.

Today, I'm not well.  I'm battling a migraine and feeling nausea and have funny pains in my tummy.  

Is it the long stressful week we had?  Is it a bug we caught perhaps?  Is it the hoping he gets approval for this new treatment ASAP?  

June 30th will really mark the most memorable beginning of this whole journey.  June 30th we were at a wedding outdoors and he had to find shade and sleep under a tree.  That's how tired he was. I'm thinking that was the day all this began.

HAVE YOU DONATED YET TO THE 5K WALK THIS SUNDAY????

If not, please help me help Tony help Princess Margaret Hospital.

We need more research to help find the cure.  As best make this a chronic disease.

GEMM Team.

www.mm5kwalk.ca

It's approaching 1am and my headache is much better.....goodnite everyone. 

The phone call

Yesterday, Tony received a phone call from Princess Margaret Hospital.  Someone we do not know.
She said that he did not qualify for the clinical trial.  (We were expecting treatment this Thursday!)  She wasn't in a position to explain and said that Dr. C would discuss the next steps on Thursday...Seriously? ....Whatever that means.  In the meantime, Thursday, seems very very far away.

Today, he visited his family doctor.  Due to his fall last Thursday, he needed a tetanus shot.  The transplant knocked out his immunity so just in case, he needed this vaccine again.
It was great for Tony to see his family doctor again.  Hadn't seen him since diagnosed.
We asked if he knew anyone or could refer someone with regards to alternative medicine.....dietitian to help cancer patients.   He basically said to go with what Princess Margaret refers by way of dietitians.  They know the best.  It's not really what I meant but ok.  We have homework to do.
Private messages to my email with regards to any leads or recommendations would be great.

On a very GOOD NOTE!

GEMM Team has broken $24,000 tonight.
We are 82 people strong.  Cannot wait to feel the love this Sunday.
I'm really pushing for more donations.  I need to help Tony and sadly, all the friends we've made at both Princess Margaret Hospital and Humber River Hospital.  Great people battling this disease!
To donate or watch our progress, please visit:

www.mm5kwalk.ca

Thank you everyone for all that you do for us.....Employees at Delor,  our dear friends & family.  Everyone is dear to us.  I'm feeling the love.

Oh boy - Can my plate get any fuller?

I had everything covered.  Everything.
Today, Tony had all his pre-clinical trial tests and I was invited for "girl time" with friends visiting St. Jacobs.
My brother was to meet Tony at 400/Major Mac and Joe would drive downtown.  Tony left his car there and when finished would drive home safely.  All good!
I had some contractors at the house working. (small renovation)  All good!
Tony went south and I went northwest.  All good!

I had a great day shopping in St.Jacobs.
Tony's day was spent getting blood work, handing in a 24 urine sample, full body X-ray (over 20 images), ECG & bone marrow biopsy.  His platelet count went up from last week as the doctor predicted.
All good! All good!
He is on schedule.  One week today, he begins this trial with new chemo.  All good!
At this point, I'm having a productive day shopping in St.Jacobs.
And then my plate got VERY FULL.  Here it comes.
We touched base with a phone call.  He was driving home I was shopping.  All good!
We caught up on our day.  Hung up.
50 minutes later, Tony calls me.  I could tell immediately that something was wrong.  Even though he was telling me "I'm ok, relax".  A wife knows.  We just know these things.  One note and we can tell.
After he got home, he was chatting with the contractors.  He was very weak from his long day at Princess Margaret Hospital.  Contractor noticed this.  Asked him if he needed help walking to the front door...nope. Tony told him he was fine, of course.  (All men say this)
As he opened the storm door, he leaned into it, but the door just kept opening and he kept leaning and fell backwards, cracked his back head open on the veranda and fell down two steps scraping both arms and then landed on his forehead scraping that too.  He couldn't move.  His arm got twisted.  My driveway and front door are not on the same side of my house (corner house).  He called out to the contractor.  They heard him and came to his assistance.  He was bleeding and had a goose egg at the back of his head.  Theyt found him face down.  He needed stitches. My renovation is a bathroom, so first aide kit was no where to be found. Contractor lives down the street and drove to get his while someone stayed with him.  They wrapped him up and drove him to emergency for stitches.  But according to him, he tells me on the phone, he's ok.  OMG!
My plate got fuller.
My fear was something broken as what happens when Multiple Myeloma patients fall.  On the phone he assured me nothing hurt or broken.  So, my "girl time" trip ended and we drove to the hospital.
When I saw him, he looked so bad.  Bleeding and scraped and just so tired.  Poor Tony.  My heart aches tonight.  It just aches.
He got 5 staples.  He refused a brain CT scan.  No nausea.  I'm supposed to wake him up every two hours and monitor him.
So, at the end of this day, I'm grateful he didn't break any bones.
So, at the end of this day, we are 76 people strong for the walk in 10 days.
So, at the end of this day, we have raised $19,862 for Princess Margaret Hospital.

Life is ok.  Let this be a reminder to everyone that you need to be grateful for everything in life.
Learn from experiences, good or bad.
One day at a time is how I get through this whole thing.
What has Tony learned today? - that he should be walking with a cane, perhaps?

Let's see what happens with this trial.

Ch ch ch changes.....

Tony came up with this title....from the David Bowie song.

Let's start with Wednesday's doctor appointment at Humber.  They confirmed that the biopsy is myeloma related.
Another plasma cytoma :(
Even though we expected this news, it was still difficult to accept.
Oh goodness, cancer really sucks!
We ran into our regular oncologist who wasn't supposed to be in.  She is wonderful.  She saw us and took us in her office and we discussed his results.  She was sorry for delivering the news.  We must give lots of credit to these wonderful doctors.  They are so compassionate.  Delivering bad news can't be easy for them.
She also told us that Princess Margaret Hospital is aware of the results and that they are already considering 2-3 clinical trials that he could join.  She didn't really know what the next step would be.  Even though they are a hematology clinic and equipped, PMH is really "the" one calling all the shots.  PMH is "the" one place to be for topnotch treatment.  So they were encouraging us that there was a plan, but still, I was scared.

Thursday we were at PMH.  He is now 200.lbs  (at diagnosis he was about 255 lbs.)  Bloodwork showed his numbers were ok except for his platelets....they were at 68.  But that could be because yesterday they went ahead with his chemo (valcade) injection and that drops your platelets.  They weren't concerned.  Hemoglobin was at 85.  The doctor walked in with a sad face, but as she discussed his results with him and the plan, the conversation became more bearable.  Actually, we both began feeling that hope.
First of all, he qualifies for a clinical trial using Pomalidomide, Dexamethasone & Carfilzomib (PdC).  They gave us a 19 page document to read and sign.  He needs to be "flushed" out of all chemo for a two week period.  That begins yesterday.  Also, his platelet count needs to be 75 in order to qualify.  He's currently at 68, but it is probably because of the chemo just given on Wednesday.  It will rise.  Not worried.
Next week he goes for his screening visit.  Medical history, skeletal survey, physical exam, vital signs, performance status, 24 hour urine collection, urinalysis, blood samples, pregnancy test (if female), disease assessments and plasmacytoma evaluation.  The report explains the routine to taking these 3 drugs.  It explains all the side effects (he's already getting most of them)
The last thing was the measurement of these tumors.  They are visible now. They are darkened.  They are warm to the touch. They are beside each other, clearly separate on his left side near the waste.
15cm x 7.5cm  &  2.5cm x 3.5cm.

Today, they did a CT scan of his left thigh.  This swelling has not changed in size. Actually, it looks smaller. I'm wondering if it was just swollen and nothing related.  Too much walking and just stressed the area.
He also has three more lymph nodes effected deep inside, which even though is a concern, they are more concerned with his left side.  He continues to be tired, low energy, not eating properly.  Everything still tastes funny to him.  Favourites are no longer his favourites.  It is getting harder and harder to feed this guy.  He did begin to take the Ridilin.  He has become quite the chitter chatter.

If this fails, they will be re-introducing the Dpace again.  He responded instantly to it.  But, your body cannot take too much of this.  So there is hope again.  Need to fund raise for that walk!  Need to get more $$$ for those researchers.  Need to get more drugs approved here in Canada!
Have you made your donation to Tony's walk yet?
Are you planning to join our walk?  If yes, please register now.  Registration fees go up to $75 on June 12.

Please help us save lives.
www.mm5kwalk.ca

Help me help Tony and others battling this horrible disease.