Andy Genest Loves Lisa Genest

It has been four months today that I lost my sweet Andy.  I can’t believe it has been four months already.  That’s 122 days without him.  It’s unbelieveable to me.  Unfathomable.  I think a part of me is still numb.

In our entire relationship the longest we had ever been apart was about three months.  And it was torture.

Andy took a job in Ottawa in the Autumn of 2004 when his Dad, Ralph, was fighting his brain tumour and we wanted Andy to be with him.  During that few months we talked at least once a day and travelled to see each other several times.  Even still, it wasn’t enough for us.  I remember breaking down in tears at the airport every time we had to say good bye.  The emails were countless.  The phone calls would end with, ‘you hang up.”  “No, you hang up!”

Now it’s been four months since I’ve seen his smile, heard his voice, and looked into his beautiful eyes.  Dammit.  I’d give anything for him to be on the other end of a phone call.

And I’d never hang up.

I cried today.

I started back at work yesterday.  It is both refreshing and exhausting.

All my old friends seem genuinely pleased that I’ve returned, they are lovely and welcoming.  When I first arrived I felt a bit like a rock star.  Everyone coming out of the woodwork to give me a hug and say hi.  They all asked how I am, the high, tonal, offhand greeting of, “how are ya?”  Not the real, eye-to-eye, dip your chin down, lean in close, “how are you really, actually doing?” and I respond with the uncomplicated, falsified, breathy, “good, good, fine, thanks.”  With the insertion of a real, genuine, fake smile.

It has also been emotionally draining as people look at me with a tilted head and sad eyes, filled with pity.  I don’t think they know they do it, but they do.  I know I make people uncomfortable; they don’t know how to act, what to say.  I am a living and breathing representation of everyone’s biggest fear – losing someone they love.  And that is hard to look right in the face.  But, I try really hard to be normal. For them.  And for me.  I try to be brave.

I often think about a woman I saw on the Jeff Probst show (her name was Fraidy, which I found ironic).  She was in a staunch religion and was forced into an arranged marriage.  Her husband was abusive and after several years of it she found the strength to take her two daughters and restart her life.  When she was asked what gave her the courage she said (I’m paraphrasing), “I pretended I was brave person.  Then after a while, I believed it.”

So, the reason I cried.  I have been going through several thousand emails (no one thought to suspend my account while I’ve been gone) and I came across the last normal email Andy ever sent me:

2011/04/15 at 3:45 pm                   Subject: hi

The email was simple.  We were trying to make plans for dinner the next evening.  But it struck me terribly hard because this was the last day of our innocence.  Later on that evening, about three hours later, Andy experienced a weird, unexplainable 30 second ‘blip’ of which we were completely oblivious to the seriousness.

After a good cry I went in search of any other emails that Andy had sent me.  I needed to find something good.  Something positive.  I always kept the cute ones.  The romantic ones.  And there were plenty.  For example::

2010/11/29 at 8:14 am

Subject: Somebody Loves You A Lot

Open it:  Me!

How sweet is he?

I also smiled today.  I can feel him.  And I smiled.

The After Party?  Yes.  You read that correctly.

We are not having a ‘funeral’, it is not a ‘service’, please don’t call it a ‘memorial’, it is a celebration of Andy’s life, but we don’t want to call it that either.  ”Too formal,” Andy would say.  So, we are having an After Party.

Andy and I were very aware of our destiny, we were none too happy about it but we were realistic of our eventual outcome.  Andy was going to die.  And, if you knew him at all, you know he was going to plan for it.  So, we discussed everything, we discussed this, and he didn’t want a sad gathering of mourners; he requested a casual, laid-back venue, with good food, great music, and the collection of everyone we know, to stand around, tip back a glass, have a laugh, and remember the good times.

So, everyone we know is welcome to attend the::

Hope to see you there.

Hi,

I have never written an obituary before and I never anticipated having to do so for my Andy.  As the time drew near we talked about writing it together, but we wanted to focus on his life, not his death.  It took me a few days to put together the right words to honour my extraordinary husband but finally, Andy’s obituary was published in the Calgary Herald, the Ottawa Citizen, and the Montreal Gazette on Wednesday, 20 June 2012.

GENEST, Andrew Ralph

January 26, 1965 – June 14, 2012

Andrew Genest of Calgary, Alberta passed away peacefully and surrounded by love on the evening of Thursday, June 14, 2012. He was born Ralph Andrew Genest in Montreal, Quebec on January 26, 1965. In addition to being the best husband a girl could ever hope to have, he was a committed father, a thoughtful son, a generous friend and all around phenomenal guy. He was honest to a fault, he was a man with great integrity; one could count on him for anything, anytime. He was always the first to lend a helping hand and would only offer his advice or wisdom if one asked for it. His love of food and fine dining was unequalled, he enjoyed everything from cookies to corn dogs to foie gras. He was an amateur connoisseur of wine, beer, and scotch and loved tipping a glass with like-minded friends. He loved to experience new things, and take pleasure in any activity as often as possible. If we were going to go somewhere, his first question was always, “what are we going to do there?” He loved to laugh. He was a developing rock star having found the passion for guitar a few years ago, he enjoyed a round of golf now and then, he pitched our softball team to victory many a game and could still send a few over the fence, he loved skiing any slope, he was happy riding his bike, in any direction, over any terrain. He was a dedicated and professional employee, giving his best to the office every day. He was generous, intelligent, funny, thoughtful, silly, and wonderful. He was so wonderful. He was someone we were all incredibly fortunate to know. Because he lived, there is more love and kindness in the world. Andy was diagnosed with a severe and disabling cancer. He bravely battled a brain tumour for fourteen months before it ultimately took his life. The cancer may have taken him, but Andy won. He was strong and courageous every damn day. He didn’t ever complain, he never asked, “why me?” He stood toe-to-toe with cancer and continuously shoved it back. Our doctors and nurses were impressed with his resilience and expected him to go much sooner than he did. He was able to communicate and speak to me until the day he died. Andy was a warrior. I am so proud of him. He leaves in love his dearly beloved wife, the other half of his heart and soul, and every breath, Lisa Genest. He is survived by his son, Daniel Genest, student to the master; by his stepmother, the lovely Cyndy Genest, who brought Andy and Ralph so much closer; by his in-laws, Art and Judy Jepps, partner in golf and cookie enabler; by his sister-in-law, the thoughtful and talented Jodi Jepps; by his sister, Tanya Genest, and stepsisters Christy-Anne Leef and Megan Ewing; by the best kisser in town, Miss Sophie Sopherson Jepps; by his dear friends the Gianfelice-Bohen’s, the Kindt’s, the Pich’s, and the Kelley’s; and countless other family, friends, neighbours, golf buddies, softball team, and co-workers. He was predeceased by his father Ralph Allen Genest of Ottawa, Ontario who loved him and raised him to be the tremendous man we all knew him to be. The family wishes to thank the staff at the Foothills Medical Centre, Tom Baker Cancer Centre, and our Palliative Home Care team for their compassion as we fought against this cancer; especially Dr. Jacob Easaw for understanding and keeping it real. Thanks man. Cremation has taken place. Family and friends will be invited to gather and celebrate Andy’s life – watch the blog at www.andyloveslisa.com for details. If friends so desire, donations in Andy’s honour may be made to your local SPCA. Andy would love it if he could save an animal’s life.

Hi,

My dear Andy passed away last night.  He quietly slipped from a peaceful slumber to a peaceful death.  It was a beautiful thing and I am so happy for him; he no longer has to endure the cruelties of his cancer and he can move on without pain.  I was holding his hand, he was surrounded by love, and, I swear, he had a bit of a smile on his face.

I am well supported by family, friends and our home care professionals and I feel as though I’m doing the best that I can considering the circumstances.

I have started making arrangements for a party for Andy and I will post the information in coming days.

Thank you, as always, for the love.

Hi everyone,

Today is the 13th anniversary of the day Andy and I first met.  Back in 1999 when we were working at Raytheon; I was sitting at the front desk and Andy was being toured around as a new employee.  My first words to him were, “good morning, do you have a badge?” This is an example of a wonderful and happy day.  An anniversary to be celebrated.

We have passed several milestones since mid-April, ‘anniversaries‘ if you will.  I wanted to post on the 15th of April.  The 27th of April.  The 3rd of May.  The 5th of May.  But I couldn’t find the will.  Each of these days marked an anniversary of a significant date in this horrifying journey.  April 15th, 2011 was the day Andy and I experienced the first symptom, although, we had no idea what it meant at the time. The 27th of April was the day we were told we had a brain tumour and Andy was admitted to the hospital.  The 3rd of May was the day of surgery.  The 5th we were released to come home and recuperate. We can’t believe it has been over a year since this all started.

Every time I went to start a post and speak of an anniversary, it left me feeling repulsed and exasperated.  Anniversaries have always meant good things.  It seems like something to be celebrated.  I think the ‘anniversary‘ of a bad thing should have a different name. Like, ‘crapiversary’.

Anyway, as we mentioned in the last post, our goal has been to focus on the positive and make the most of the time we have left.  We think we have made some fine accomplishments.

Cyndy came to visit immediately, as soon as we called her.  We had a lovely weekend with her and reminisced and laughed and enjoyed.  She will be back for another visit next weekend.

We have spent some wonderful time with my parents and my sister; we had Easter, Mother’s Day and a lot of other days in between.

Best Man Bob {as you all know him} and his lovely wife, Marianne, flew in to visit and we were both spoiled by them and joined by them in crossing something off the bucket list. For those of you unfamiliar, Marianne is originally from France and she has introduced us to the most amazing culinary treasure: Foie Gras.  They brought foie gras to share with us which was sent all the way from France, accompanied with homemade onion jam all the way from France, and love, love, love all the way from France.

Then we went to Banff for a day, we made it up the gondola on Sulphur Mountain and then went to the Grizzly House {famous for fondue} on Main Street.  This is something we have always meant to do and we were thrilled to share it with our wonderful friends.  We felt adventurous and shared some exotic meat; we dined on alligator, shark, rattlesnake, frog’s legs, bison, wild boar, and then good old lobster, scallops, prawns, beef, and chicken.  And, of course, we completed our evening with a Toblerone fondue.  Delish!

We have ventured out on several walks around the neighbourhood, we’ve been trying to get out once a day.  We finally received our new wheelchair so Andy is much more comfortable hanging out in the chair.  One night we had an impromptu gathering with the neighbours in the garage – just like old times.  It was fantastic.  Dave + Kris, Jonas + Lindsay, and Jack + Linda pictured below.  (John + Heather joined in later but missed the photo.)  We have the best neighbours.

Another request Andy had was to have a fondue at home.  So, we asked Jodi to pick up some groceries and we had a “Sunday Funday Fun Fondue Day”.  For those of you that don’t know, Jodi comes over every Sunday to help around the house, and she usually brings lunch or dinner.  My Aunt Rosemary learned of our special days and being that she is far away in Vancouver and unable to visit she has become our Sunday benefactor.  So, she is the finance behind our feasts.  Thank you Auntie Rosemary!

We started with a cheese fondue mid-afternoon, then we had a broth fondue {oil is too fattening!} and we finished up with a Toblerone chocolate fondue {of course}.  I’m not sure which one was our favourite because they were all pretty great, but a special mention goes out to Jodi for picking up alligator and lobster meat as part of the main course.  So good!  {Thanks again to Jonas + Lindsay for lending us your fondue set!}

Most of you saw on Facebook that we were able to spend an evening out at a Van Halen concert.  Van Halen is one of Andy’s favourite bands and we were so disappointed months ago when we found out they were coming and we probably wouldn’t be able to go.  A few days before the concert we decided we would give it a try, I was able to score some tickets and Jodi booked us a super stretch SUV limo. We had a fantastic evening, enjoying a few drinks, just about all the food at the Saddledome, we bought a few shirts and rocked it out to Van Halen.

These are just a few of the fun things we’ve done in the last six weeks, at least those with photographic evidence.

We would like to say thank you to so many of you that have left comments, sent messages, and contacted us.  It has been so wonderful to hear from all of you.  Please, please, please, if you are reading this blog, please say hello, or email us (lisagenest {at} shaw {dot} ca), we would love to hear from you.  Even if you don’t know what to say, just let us know how you’re doing.  It adds to our days, it gives us something to do. We don’t feel so alone.  Please.

We also need to thank countless friends and family for goodies and gifts and cards and love.  We would like to name everyone that has done something but the list would be incredibly lengthy.  But,… thank you for dropping off meals, doing yard work, sending cookies, flowers, baskets of goodies, presents, cards in the mail, thank you for muffins and banana bread, and Starbucks, and buying us groceries, and taking the time to drive or fly all this way to see us.  Thank you for fish and chips, and dim sum, and Guiness, and La Brezza, and burgers, and sushi. Thank you for Skypes, and texts, and emails.  Thank you for supporting us and being there for us and not letting us feel like we’re alone for one minute.

Love to all,

Lisa+Andy

xoxo

p.s.  As you can see, most of our fabulous experiences have centred on food – our next challenge?  A crawfish boil!

Hi,

During the last year we have several ‘worst days of our lives’.  The day we found out we had a tumour.  The day of surgery.  The day we found out it was the worst kind of tumour. The day in July when Andy had a seizure and was hospitalized.  The day we found out his back was broken.

But this past Thursday, by far, was the worst worst day.

Andy hasn’t been doing extremely well the last couple of weeks.  He has been getting weaker and weaker, he’s been dropping weight, the ‘regular’ symptoms we’ve had, like the difficulties speaking and word finding have been getting worse, and we’ve had a few other new symptoms crop up like a slight loss in hearing and blurry vision.  We neglected to inform the masses because we wanted to wait for the MRI results.  Our fears of the worst were realized when we met with oncology and they delivered the news.

Deep breath.

The tumour has grown again and our lab results are still not favourable.  There is no possibility of surgery.  Andy’s body cannot handle any more chemo.  There is no other chemo to be tried.  Any further treatment would do more harm than good, as odd is that is to say.

This is the end of our fight.

They have given Andy about two to three months to live.  About half of that, there is a good chance he will be incoherent and asleep.  We’ve been told this should be a painless and relatively quick death, for this we are thankful.

Believe it or not, we are in relatively good spirits.  What else can we do?  We have decided to make the most of our every day.  We plan on spending every waking moment together, visiting with our family and friends, reminiscing and laughing. Creating some new and wonderful memories.

We have shared this information with our closest circle, and there are a few other people we would liked to have told this to in person, but the number is too great and we just wanted to get it out there. We apologize for delivering this news so callously and coldly in this format but this is the best vehicle to get the news to everyone.

As always, thank you so much for your love and support.  We hope to hear from as many of you as possible and hopefully we will be able to see a lot of you as well.

With a tremendous amount of love,

Lisa+Andy

xoxo

Hi,

Again, I’ve been slack in posting on the blog – so sorry.

We spent a lot of this last month of March focused on finding the best equipment that will help Andy be as comfortable as possible.  We had to have his hospital bed repaired (did you know we have a hospital bed now?), we got a new mattress, then another, then another. We now have the crème de la crème of mattresses (an air mattress) that is super comfy and has helped Andy’s back heal (well, it was helping – back to that in a moment). We’ve also been fitted for a custom wheelchair which we are excited about (did you know we use a wheelchair?) (only when we’re out and about, Andy is still walking around the house); we should get it in the next couple of weeks.  In case you’ve forgotten, Andy is a big dude, so, you can imagine the standard general wheelchair doesn’t really ‘fit’ him. And, as of tomorrow we will have a portable shower to use so Andy won’t have to make the difficult (and unsafe) climb up the stairs.

Medically, things had been going pretty well in March, until last Monday when oncology called and told us that our liver enzymes had spiked again and the number was over the acceptable level to be on chemo.  So, we’re off chemo for the time being.

In the last couple of weeks Andy’s sugar levels have spiked again so we’ve been in consultation with the diabetes clinic to get that under control.  Not to mention finding out the reason why.  I’ve been going over all of my notes and records and I think I’ve figured it out (crosses fingers).

And, as I eluded to before, Andy’s back had been healing very nicely, almost to the point of no pain at all.  Then, just this past Sunday, Andy simply stood up and, snap, something tweaked in his back and he’s now in pain – again.  Sigh.  %&^$#@!!

So, where are we now?  We are off chemo until further notice, we are being very cautious with Andy’s back, and we are awaiting our next MRI, which is the 2nd of April (then the follow up appointment for results on the 5th.)

That’s it.  That’s all.

Love you,

Lisa+Andy

xoxo

p.s.  We also wanted to thank everyone for the lovely birthday wishes and cards and gifts and dinners and attention and prayers and thoughts and wishes.  We are so lucky to have you all.

Hi,

As usual, too much time has gone by since we last blogged.  ’Time flies‘, as they say. Although, why we’ve taken soooooo long to blog I don’t know, as we are happy to report that things have been looking up since the last posting.

Andy’s back pain was, by far, our biggest obstacle this past month.  He adjusted to wearing the brace and it did its job – for a while.  Then, all of a sudden the pain in his back was radiating out from the area of the fractures; it was excruciating, almost worse than the fractures.  Assuming it was a musculature issue we opted to visit Jodi’s fantastic chiropractor {a shout out to Dr. David Lawson at Downtown Integrative Health Group}. He gave Andy some treatments for circulation, muscle stimulation and relaxation; and more importantly some exercises to assist in stabilizing Andy’s core when he had to move around or transition from sitting to standing.  Anyway… he hasn’t worn the brace for a little over a week now and his pain has decreased significantly.

Another serious issue we’ve been battling is Andy’s increased weight {about 45 pounds – gasp!} and a huge amount of swelling all over his body {feet, legs, abdomen, hands, face…} So, we had to add two new meds to rid him of all this water weight.  They are working well and he has lost about ten pounds in the last couple of weeks and his feet look like feet again.  You don’t realize how detrimental swelling can be, for example, Andy’s fingers swelled so much that his fingernails started to cut into his fingers so now he’s on another {freakin} med to care for skin breakdown.

This last week was pretty significant because we finished the 28 day cycle of chemo on Tuesday and we received the results of an MRI we had on the 10th of February {they moved it up because we all wanted to know what was ‘going on in there‘}. We are happy to announce that the tumours are stable and have not shown any new growth in the last six weeks.

Can you say, “yay!“?

We, and oncology, are very pleased with the results.  <- Obvious statement.

This means that we have started on the next 28 day cycle of chemo, because, along with the positive MRI results, all of Andy’s lab work came back favourably, and his negative symptoms have reversed again {improved speech and dexterity}.

With Andy feeling a bit better lately and with his ability to move around again we have been fortunate to get out of the house a couple of times to enjoy a meal out.  We had a Valentine’s lunch, met with our friends Lisa + Ken, Andy had lunch out with his friend Cory and we celebrated my Mom’s birthday last night with Mom, Dad, Jodi and Aunt Rosemary.  We are incredibly thankful to get out of the house every once in a while.

That is it for now, until next time.  Love you all,

Lisa+Andy

xoxo

Hi everyone,

Last you heard we found out the tumours had grown and we learned we are now in the next ‘phase’ or ‘category’ {my words} of treatment: regrowth.  Oncology presented us with three options to consider; the first was surgery, the second was our same chemo on a new schedule, and the last was a clinical trial with a different chemo.

We decided we wanted to see if surgery was a viable option so we consulted with a new neurosurgeon {our original surgeon, unfortunately, has left the Foothills} and while he told us surgery could be an option, he didn’t think it was the best option. Due to all the additional issues we have encountered {blood thinner meds due to the blood clot, the liver issues, the diabetes, etc.} surgery would be a higher risk.  And, while two of the tumours are close to the skull, the middle one is imbedded and would be inoperable anyway.  So,… next…

We returned to oncology to let them know surgery wasn’t the best option for us and we wanted to hear their recommendations but we also needed to let them know that Andy was experiencing excruciating pain in his lower back.  {Andy has had discomfort since last October but the pain increased significantly on January 7th.}  Oncology was concerned because we couldn’t receive any chemo or treatment with him in that kind of pain.  We were at a very serious impasse so, not knowing what else to do, we insisted on an x-ray before we left the clinic and went home to wait for the results.

We received a call late the next day and we were shocked to find out that Andy has two compression fractures in his spine {vertebra L1 + L2 for those interested}.  We spent the next week going to appointments to have that straightened out {no pun intended}.  We had to be casted for a back brace, then back in for a fitting, we had to go to Andy’s GP for a pain management prescription, and we also had a consult with another neurosurgeon that specializes in the spine.  All this traipsing around with Andy in a serious amount of pain.  {Have I mentioned how a.m.a.z.i.n.g Andy is?  He bears it all through gritted teeth and no complaints.  My husband is my hero.}

Now that we had Andy’s back pain under control we returned to oncology to discuss our next step.  Due to some symptom flare-up {more difficulty speaking, etc.}, the advice of the surgeon, the time ‘wasted’ having Andy’s back fixed up, and most obviously, the fact that the tumours were growing we were determined to start treatment as soon as possible. That ruled out the clinical trial {for now} because we didn’t even know if we would qualify, so, that left us with door number 2 – a new chemo regiment.

It’s called the ‘Rescue Protocol’.  The chemo is the same, but we take a smaller dose every day.  The bad thing is that this is the same chemo that damaged Andy’s liver, but the good is that Andy has tolerated it well enough.  Due to all of the crap we’ve gone through so far Oncology will be keeping a close eye on us and we’ll be at the clinic weekly.

We started the chemo last Wednesday {January 19th} and Andy has handled that quite alright. He experienced some minor nausea and he’s been kinda sleepy but otherwise the chemo has been okay.  However, some of his symptoms have been decreasing steadily this last week, his speech and the ability to communicate {scary}, his mobility and dexterity on his right side is slipping.  This makes it difficult to hold utensils, use the remote {gasp!} and he’s developed a bit of a limp.  So… we called oncology and we have to increase his steroid again {we doubled it} because it is likely there is a lot of swelling going on due to continuous tumour growth {let’s hope not} or the chemo can cause inflammation as well.

That is about it for today {that is enough I think} and I have to head to the office this afternoon.

Love you all,

Lisa+Andy