Saturday, November 22, 2014

Learning to be a widow

I came across this article, which really says it all.

Learning to be a widow is the hardest thing I have ever done

(Neal Cresswell)

I lost my husband on Nov. 29, 2011, a statement that implies I merely misplaced him in an absent-minded fit, and if I could just remember where I left him then all would be well again. The euphemism sounds better than the truth.
With spousal bereavement, things don’t get better, just different. Everything feels wrong. A rift exists between us, as I go on and he doesn’t. Time comes between us. When sutures refuse to hold, the wound opens unpredictably. So it is for the widow or widower: The world assumes that time has done its proverbial work and “healed” us. No. We bleed still, our amputation aches. The wound never heals because our partner is gone, forever. Time heals nothing.
I’ve read my way through every stage of life, so when abducted by bereavement I naturally turned to books. I devour books, and as a child I sniffed them, too, assuming that the place of publication (London, New York) smelled just like the book.
Bereavement literature frequently mentions waves of grief. Tiny waves may carry unsuspected currents. Then there are the tsunamis. Buddhist books suggest meditating as the waves of emotion surge: sit, and without judgment simply abide with your feelings; ride out the waves like a skilled surfer, paddling through the worst of it.
Or pedal through the cycles of anguish, say other experts. There are three cycles, or four – opinions differ. Some cycles tear the victim asunder, while gentler cycles numb, a welcome respite from what has gone before and lies ahead, which you begin to recognize because these are, after all, cycles and any fool can spot a pattern after the first few weeks.
But sometimes there are no patterns. Loss struck me as the graph of a bad tech stock, where today’s all-time low is a mere prelude to tomorrow’s new rock bottom. Then, perhaps 18 months on, bereavement was more like learning to walk again, minus childhood’s tottering charm.
This is what I now understand: Some emotional land mines we can brace for, such as a wedding anniversary, the date of diagnosis or death, the first holiday without them. But most land mines are unexpected: a few bars of music, a mental snapshot, a handwritten note. You cannot protect yourself from these, and they are everywhere.
In the first fresh agonies of separation I howled like a distressed animal (which I was). Sanity receded. My centre gutted, mindless chores helped to ground me. I struggled against the desire to call out for help, not wanting to trouble others, sensing even early on that few would understand the depths in which I floundered.
Our grief-illiterate society lacks the Victorians’ polite shield of mourning dress: Then, one glance proclaimed both an individual’s emotional fragility and the relative degree of sorrow. Today, many deny death’s reality by doling out advice (“keep busy” or “take a trip”) with more enthusiasm than logic, as if all the bereaved need is distraction.
Alternatively, we are encouraged to “remember the good times.” but that only reminds us of who and what we’ve lost. Once we lived in technicolour, now all is black and white. We are first with no one. After decades at the head table we’ve become “ … one that will do/to swell a progress, start a scene or two … ” or, more prosaically, fill a last-minute gap in a seating arrangement.
I need to come to terms with the fact that nothing will ever be right again, for his death was the death of “us,” and when he died “we” died, too. The edifice of our 27 years together was abruptly demolished in the four months from diagnosis to death. I’m left sifting through the rubble with my half of the memories. The only other person in the world who shared those remembrances is gone. I fear that without his reinforcement of our memories I will gradually lose even my half of the tale of “us.” And as our life together equalled most of my adult life, I may in time forget much of my own personal history.
Worse, I worry that over time he will slip away completely.
My mind automatically sorts memories and events into before or after his illness and death. The last weeks of his life are welded into my being. I relentlessly replay specific scenes as if hoping for a different ending. The flexibility of time destabilizes me: Sometimes it seems he disappeared decades ago, but moments later I imagine that he just stepped out of the room. Along with time, the magnitude of loss shifts – from bottomless pit to manageable sorrow – further disorientating me. Am I going mad? Has anyone ever felt this way? In my mid-50s, I’m like a confused teenager again. Who am I? What should I do? I’m a stranger to myself.
Small things overwhelm me. Life without Michael is both too much and too little. Even the altered vocabulary jars: an official form with the box “widow” ticked, the word “late” in front of his name. Surely someone has made a mistake?
Learning to be a widow is the hardest thing I have ever done. I proceed grudgingly with this business of fashioning a new identity and becoming fluent in the language of life, after.
Joy Tyndall lives in Toronto.

Tuesday, September 2, 2014

I'm having a hard time focusing lately

This was given to me by a fellow widow.  She lost her husband to Multiple Myeloma.  Not sure if she wrote it or copied it.  What is important is that she shared it with me to share with my family and friends.  It truly says it all. I don't have the mind or strength to post anything in this blog.  I hope one day to reflect my thoughts and feelings. With hopes of helping others deal with this horrible disease.

To My Friends,

I have lost the one I love, the one I cherish. My lover, my best friend, my whole life. Either you have stumbled across this because you want to find out how to help me, or I have given this to you.

How I am Feeling
• I am numb. I am in shock. I am emotionally exhausted.
• I am in pain. A horrible, gut-wrenching, intense, unimaginable, and indescribable pain.
• My mind is totally occupied with processing my loss. I am trying to understand what has happened. I am attempting to make sense of it all. I am trying to comprehend the incomprehensible.
• I can't sleep. I want to sleep all day. I am physically exhausted.
• I can't eat. I can't stop eating.
• I can't be bothered cooking. I can't be bothered cleaning. I don't want to go shopping.
• Everything is overwhelming. Small tasks are overwhelming. Small details are overwhelming. I just don't want to know about it right now.
• Nothing sticks in my mind. I walk out the door without my keys. I forget what I was going to do. I forget everything except that my love has gone.
• I am going through tidal waves of emotion. One minute I might be laughing, the next I may be in tears.
• Sometimes I want to talk. Sometimes I need to be alone. Sometimes I need silent company. Sometimes I need all of these things in the space of 5 minutes.
• Some days I just want to curl up in bed and do nothing. Some days I will keep myself totally occupied in an attempt to escape.
• Sometimes I will be intense. Sometimes I will be irrational. Sometimes I will be snappy, and often I will be totally lost in myself.
• Often I may not have a clue as to what I want, but it only takes a moment for me to realize what I don't want.
• I am hypersensitive and will often be offended by things you say to try and make me feel better.
• I want to wail. I want to scream. I want to cry. I want to just sit.
• I have no choice how I react. This is coming from deep inside me and intelligence and self control have no effect. It comes from the basal self.
• Sometimes it so hard for me to respond to phone calls or letters or emails, but I truly appreciate that you are doing it, so please don't stop just because I don't respond.
• I will not be fully-functional at work for a long time. In fact, I may never work with the same intensity again as my perspectives of what is important and what isn't has been changed permanently.
• I still want to laugh. I need to laugh. I may suddenly go quiet mid-laugh, when hit by a sudden reminder, but I desperately need to continue to laugh.

Emotional Things You Can Do
• Let me talk about him. I want to talk about our love. I want to tell you how we met, our last days, and everything in between. I want to show you his picture, tell you how wonderful he was.
• Let me cry. Your acceptance that I need to cry and your permission to allow me to is one of the best gifts you can give me. Hand me a tissue, and do your best to sit quietly and let me cry.
• Once you have allowed me to open up or cry, please don't change the subject or try to stop me. I know you feel uncomfortable that I am in pain. Don't. Changing the subject, trying to stop me crying just makes me hold everything inside, and eats away at me.
• Tell me all your stories of when my love was sweet, courageous, rotten or funny. I need to hear everything about him. If you don't know many, find out some from those who are too scared to approach me now.
• Let me try to tell you what is going on inside me. I won't succeed, but I need to try.. You don't have to do anything. Just allowing me to do it, and allowing me to feel what I need to feel means so much.
• It is really hard for me to tell other people about my loss. I'm working full time to deal with my emotions. Trying to deal with someone else's reaction or discomfort is the last thing I need, so if someone needs to know it would be good if you could explain it to them.

What Not To Do
• Don't tell me you understand how I feel, or that you can imagine the pain I am going through, unless you have lost the love of your life. Trust me, you can't. If I can't, and I am going through it, trust me, you can't – your mind will just not let you voluntarily imagine this much pain.
•Don't try to compare my loss to the loss of a parent, or a friend, or an acquaintance or pet, it's not the same. I understand that all of these things are painful, but it is not the same.
• Don't ask how I'm doing unless you really want to know. I am assuming that if you have asked, you won't be offended by what I say in response.
• Don't try to save me from my feelings or make me feel better. I know you can't bear to see me in so much pain, but I need to go through all of these feelings whether I want to or not.
• Once you have "given me permission" to talk or cry, please don't try and distract me with small talk. I know it makes you feel better if I appear happy, but my pain is ever-present and it makes me feel like you don't care.
• Don't tell me everything will be okay.
• Don't tell me "he's always with you".
• Don't tell me "he's no longer in pain".
• Don't tell me "he's looking down on you from heaven".
• Don't tell me "you're lucky that you had such love, some people never do".
• Don't tell me "he's in a better place".
• Don't be surprised however if I say these things to you …
• Don't ever tell me "you must be strong". If ever there's a time I should be permitted to be weak, this is it. I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me.
• Whatever you do don't tell me "If I were you I'd…." Until you are in the same situation, you have absolutely no idea what you will do. Your logical brain has absolutely no control.
• Never try telling me "life goes on", or "he wouldn't want you to cry", or "G-d will never give you more than you can handle" or any other meaningless platitudes.
• Don't try to solve my "problem". Unless you can bring him back, it can't be "solved".
• Don't feel the need to fill in silences. I know the silences are hard for you, but if you can accept them, you are helping me immensely.
• Please don't try and help me find "closure", or tell me I need to find "closure". Closure is an obscene word for me right now, just as  "moving on"/"move on" is.

Thursday, July 24, 2014

One Month Mass

After much thought trying to pick a Church convenient for most, I finally made a decision.
It will be an English mass.

Tuesday, August 5th @ 7:30pm
Church of St. Clair of Assisi
150 St. Francis Avenue
Woodbridge, ON

(North West neighbourhood of Weston/Rutherford)

Monday, July 21, 2014

Tony's Eulogy, read by a very dear friend of ours, Gerry.

Although this was written for my eyes only, I think he did a great job.  Often, if not most of the time, people would think that Gerry and Tony were brothers.....(looked very similar)  His courage to maintain his composure while he read this was amazing.......Gerry is, after all, one of Tony's very good friend.  Tony's passing has effected many as a son, husband, father, brother, brother-in-law, cousin, friend, customer, boss, neighbour or teammate.  And of course, cannot forget all the kids through Tony's coaching days, we thought of as a second family to us.  
So, thank you Gerry for reading this at a very difficult time.

On behalf of everyone assembled here this day, I wanted to extend our most sincere and heartfelt condolences, sympathies and prayers to the Gemmiti and LoCurto Families upon their tragic loss during this darkest time.
You must all attempt to help me through this tribute as I am unusually sentient this day.
Indeed, I usually canʼt watch the exploits of ʻTouched by an Angelʼ or my ʻQueenʼsʼ favorite, The ʻWaltonsʼwithout becoming misty, and often times weeping openly.
But this day is different!

Although, the ʻGood Lordʼ has dispatched his ʻAngelsʼ, to accompany our ʻFallen Brotherʼ and propel him towards his ʻHeavenly Kingdomʼ, albeit prematurely, this verbiage will celebrate my perspective on the Life and Legacy of an Extraordinary man, a man of more than ordinary mettle.
Antonio Gemmiti, inherently embodied everything a man aspires to become.

A proudly loving, respectful, and dutiful son and brother, ever reverent and watchful, attending to their every covet, crave, or desire.
A cherished and nurturing ever gracious Husband and Father, a hunter, purveyor, provider and protector for his precious family.
You would be hard pressed to find a man as amicably affable, approachable, and convivially cordial as Tony, communicative, chatty and continuously courteous, frank, civil, and obliging.
Never considered a loquacious, garrulous, rambling or longwinded conversationalist, Tony was a storyteller nonetheless, eloquently graceful, complimentary, tactful, and ever thoughtful, as many bore witness to firsthandedly this past week, as they shared their poignant remembrances and reminiscences and bade their saddened farewells within the hallowed halls of the venerable Mount Sinai Hospital.
Indeed, Tony, was bestowed with a genial spirit, an essence, a vitalness, a soulful myriad of mirth and merriment.

Blessed with a sunny disposition that would illuminate every environment that he embraced, he possessed a congenial humour, a pleasant jocularity, jesting and joshing, amusingly funny, and whimsically witty.
Inside the man, Tony possessed a civilized humanity, a benevolent, kindhearted spirit, always accommodating, compassionately gentile, and tenderly merciful.
His moral compass resonated with a cultivated, educated, and enlightened sense of dignity and integrity, a reverence for righteousness.
Indeed, a man of unparalleled distinction, dedicated, diligent, and deserving of Lifeʼs fullest amplitude.
A successful and entrepreneurial businessman in his own right, Tony was always the consummate professional, proficiently adept, masterly and skillful, ever generous, trusting, fair minded and loyal to his family, employees, and clientele.
My ʻBrotherʼ, was an entertainer extraordinaire, the unmitigated and profoundly complete ʻHost of Hostsʼ, unbridled generosity, a benevolence bordering on philanthropy. altruistic, magnanimous, and bountiful.
It was through this wondrous fellowship of friendship that I was introduced unto his unprecedented character, his honest, integrous, quiet and gentle self.
Veritably, as a glutton of unprecedented proportion, my ʻBrotherʼ always fueled my foodie fantasies with superbly sumptuous delights, such as splendiferously succulent ʻspiducciʼ, pleasantly palatable ʻporchettaʼ,tasty, spicy and savoury, and at his belovedʼs fiftieth milestone Birthday Bash, a fatted ʻporkerʼ, roasted to the pink of perfection.
Fueled and aided by the odd liquid libation, at his favorite hideaway on the riverfront of the ʻNottaWasagaʼ, we enjoyed the unpretentious experiences of endless nights consumed with oftentimes meaningful, heartfelt, and passionate conversations.

Certainly, we both fervently believed in the power of intention, in truth, and reality, whereby every decision, strictly, truly, and verily, righteous or wrongly, has brought us to this very distinctive moment, indeed, an intention of the ʻDivineʼ.
As a seemingly ageless, yet semi-retired athlete, and unrepentant athletic supporter, Tony remained a diligently committed sportsfan, loving to engage, embody and embrace, counsel, ʻCoachʼ, and mentor his beloved ʻBolton Senior Baseball Teamʼ, remember and reminisce with his hockey ʻHooligansʼ, and celebrate the glorious grandeur and greatness of his golfing glory.
Indeed, Tony possessed a resilient, pliable, flexible, yet sturdy, strong, and secure strength of character and an unwavering personality.
Tony was courageous, patient, understanding, imperturbable Even whilst being ravished, tortured, and tormented with this incessantly disruptive disease.
His tenacity to persevere, to overcome, his will to win was indomitable.

Indeed, ʻThe Good Lordʼ has been present with him, step by step, during this arduously painful journey.
Witness his farewell ʻFeteʼ, accepting the acute awareness of his imminent plight, he chose to greet his kinship, brotherhood, and the fraternity of his fellowship with dignity, honour, and respectability, and remained courtly, majestic and noble, throughout, as he jested in his own words, in the participation and enjoyment of his own wake, whilst he was still awake!
Above all else, in my humble opinion, Tony, valued, loved, worshiped and adored his Family, his Mother and Father, his Sister Paola/Tony, his devoted in-laws Joseph/Fiorella , and their entire extended Families, his Twin Towers, Michael and Robert, but most of all his cherished Maria, his childhood sweetheart, his charmingly engaging, and enchantingly beautiful Matrimonial Bride and lovingly nourishing Mother of his beloved boys, his Soulmate!

Tony, we have delighted in your fondness, warmth, tenderness and attachment to life itself, your unfounded passion, devotion, and esprit du corpsʼ for all that you enlivened, engaged, animated or exhilarated.
We will surely miss the camaraderie with our crony, our chum, our companion and confrere, his warm and compassionate smile, and his sense of affection, attachment, and amicability.
But we will never disregard, dismiss, or dis remember our ʻBrotherʼ.
Rather, we will redeem, reclaim, and regenerate the recognition, retention, remembrance, recollection and remarkable retrospective that was and is Tony Gemmiti.
In closing, I firmly believe that the collective of our Prayers, sympathies, condolences and compassionately contemplative meditations and reflective thoughtfulness have not failed us. They have not been for naught, forgotten, nor abandoned. Indeed, as heralded, they have paved a passageway to a prepared place of prominence and priority for our fallen ʻBrotherʼ at the ʻBanquet Tableʼ of our ʻGood Lordʼ!!!

Friday, July 4, 2014

Funeral Arrangements

I just have a quick minute to enter my post.  I promise to come back and thank you all properly.  Please know that I am overwhelmed with texts, emails and Facebook posts.   Please know that I haven't been able to read each and every one of them, but I can guarantee that I will soon. When I feel sad, all I have to do is read one text or email and I'm good.  The support has been amazing.  I am never left alone.  Family and friends have been wonderful.

So, for now, in case you haven't been informed yet, Tony passed away peacefully on Thursday, July 3 at 11:25 am.  He was surrounded by everyone he held very dear to him.
The viewing is today at Vescio Funeral Home, Woodbridge Chapel from 4pm to 9pm.
Mass is on Saturday, July 5 at 9am at Immaculate Conception in Woodbridge.

I love you all for your very kind words of condolences.  I knew how special he was when I met him and am not surprised by all of these responses.  So on behalf of myself and my boys, thank you.


Wednesday, July 2, 2014

"It's like a wake, but the guys awake"

Our family has truly been blessed these past few days.  People keep coming daily, some of which come every day.  It feels like he's a phenomena.  A miracle worker.  Can't explain it.  I'm just in awe of these past few days.  The first time people walk in they are anxious.  He reassures them and tells stories and makes them feel at home.  It is such a blessing to witness this man comfort people when they come in.  Each and every person is told a memorable story of an experience with Tony.  All smiles.  All jokes.  Everyone truly loves and adores this man.  It begins at 9am and ends 9, 10, 11 or midnight.  The staff ask to keep it down, but cannot ask us to leave.  As one security guard said, "how do I kick out people having a great time and laughing?"
Last night, a bunch of "men" came marching down the hall.  These men were guys who have played hockey with Tony for over 25 years.  They were all in the room reminiscing.  Only the men were wives allowed....LOL  It was fantastic.
What has amazed me, but not surprised me is the kids.....the baseball children's friends.   They are the ones that come daily.  They are the ones sitting/standing all around him, often 10-15 people at one time and just listening to his stories, like sitting at the campfire at the cottage.  They are the ones, who after a nice visit, send me a private FB message.  A letter to Tony.  Asking me to read it to him, because they don't have the strength.  So many memories.  I'm grateful for this time as my two fine young men experience this and will always have this to cherish forever and ever.

Both Tony and I love you all and are blessed to have you in our lives.

Sunday, June 29, 2014

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.

Friday, June 27, 2014

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,

Wednesday, June 25, 2014

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.

Friday, June 20, 2014

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.

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.

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

Tuesday, June 17, 2014

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:

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.

Thursday, June 12, 2014

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.

Friday, June 6, 2014

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.

Help me help Tony and others battling this horrible disease.

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!