Help Mark Eat Solid Food Again & Raise Awareness

My name is Katherine Marimon - my husband and I have been together for more than 20 years. We started and built a business both working more than 100 hours a week for many years and then out of the blue Mark was diagnosed with 4th stage sinus cancer which turned our life upside down. He is going to require several more surgeries for the reconstruction of his mouth and jaw to allow him to eat solid food. He also is just starting six weeks of radiation and chemotherapy treatments in Saint John so a commute of 1.5 hours each way five days a week. Being that he lost his left eye, he will need additional plastic surgery and a prosthetic eyeball. Most of the remaining procedures will not be covered by provincial health plans and must be paid out of pocket which could cost close to $100,000. Please note that should our estimation of uncovered medical reconstruction costs fall less of our goal, we will be donating the remainder (or excess above goal) of the funds to both the Saint John Regional Hospital Oncology Department and Dalhousie University ENT Cancer Research/QEII Hospital Oncology Department.

Below is our medical journey in the form of 'Mini Updates' posted over the past two months...

"Life is like a box of chocolates..." and sometimes, there are those turns in the road of life that cause you to well... stop short and just try to catch your breath... we are meeting one of those twists... I am reaching out to all, near and far.

Attempting to 'dance in the storm' we are experiencing out here in the Maritimes, I am in dire need of some 'music' to help us along this extremely difficult turn in our life journey together... on September 23, 2022, Mark (the Yin to my Yang... the calm to my storm... the man who has shown me unconditional love since the first time we met... my loving husband of almost 20 years) was diagnosed with Stage 4 Squamous cell carcinoma of the left maxilla extending through the nasal lacrimal system to his orbit and also to the nasal cavity... numerous trips to Saint John for CT, Pet Scan and MRI scans as well as meeting oncologist and radiologist... then trip to meet surgeon and team...

It is early and I have already been up for hours... a rough sleep night... surgeon (one of the best in Canada) called yesterday... he said Pet Scan didn't show anything more ... whew! however, when he viewed MRI and compared it against the initial CT Scan he believes the tumor has grown since... surgery date is set for Nov 7th... YIKES! and will take approx 12 hours unless complications take the medical team outside of their current plan... surgeon advised that he will most likely lose his left eye however won't know how much facial bone (cheek/jaw/teeth) he will have to remove to get good margins until he sees the tumor and its spread... have a feeding tube for several days and oxygen feed to side of his neck as they will have to take out the roof of the mouth and part of the cheek and can't have any air getting to the brain should he sneeze... we should expect Mark to be in hospital for ten days to two weeks then two weeks healing at home before six weeks of radiation treatments (Monday to Friday)... gosh darn it, my hands are just sweating and feeling like stomach is in throat...

so there you have it... truly... I believe in the power of prayer and good vibes from the Universe and I have always been reluctant in my life to ask for help until too late... so I am asking now for all to send us their best vibes as I know in my heart that they will be felt... .. love the ones you're with and live large as best you can...

With love and gratitude,

Katherine

Mini-Update November 17, 2022

The horror show rages on... after having survived a 19-hour surgery on November 7th, and although there have been small recovery victories, it seems every day since has presented challenges and setbacks... In the first surgery, Mark lost his left eye and a good deal of supporting bone beneath... additionally, Mark lost part of the roof of his mouth. jaw, three upper front teeth and all teeth on the upper left side...

Although there has been healing in some respects, the doctors have not been completely happy with the eye flap (i.e. grafted skin that covers the eye and part of the cheek)... they believe the skin to be all or partially dying... due to an infection now developed in his neck incision, doctors now suspect that part or all of the upper mouth repair needs to be redone... so another slew of dragons to slay...

Mark will be having another significant surgery today, Thursday, November 17th... the brilliant team of doctors will be redoing the eye flap, part or all of the rebuild to the upper mouth and, as a result of this unanticipated and immediate second surgery, they will be taking bone from his lower right leg to rebuild upper jaw (so that Mark can, hopefully, receive new teeth in due course) which hopefully will result in not having to return for reconstructive work...

We are both terrified yet know we must believe that we have this... we knew this road would be difficult, however, never imagined it would be this hard... so... I write herein again... requesting your help as every day has been so very depleting and know it will take an army of angels to get us to the other side... together.

Wishing the very best to all... thank you all once again

Mini Update... 11/19

Mark's second surgery was 13.5 hours (the total time of both surgeries was approximately 33 hours)... yesterday was in ICU and is now back in his regular room (actually has the room he was in for the past 11 days)... and I can personally attest that our 'second tour' has been no easier... just like a nightmare that repeats itself night after night... so now we prepare for another two weeks in hospital and pray that each day there is improvement... now to the next step... and a deep breath to carry us through...

Thank you for the magical outpouring of love, light, prayers and encouragement... please keep them coming as we are not out of the woods yet...

LOVE and JOY to all... go out there and LIVE LARGELY!

Katherine

Mini Update 11/23

This entire experience has been traumatic... and wishing it would just stop... let us both get into our car... retrieve our furry son, Finigan, and head home to our bed...

Far from steady shores... the surgeons encountered the mother of all clots in Mark's mouth during the second surgery... took a near land mine to blow it away... they are searching for a piece that may have blown off into his system during that process... the clot has necessitated the use of blood thinner and because of Mark's specific surgery and location, there has been significant blood loss creating the need for daily infusions... all about finding the balance and hoping blood tests reveal the ability to slowly decrease the blood thinner without clots emerging... as with the first surgery, there are small healing victories however it seems the gut punches still keep coming.

To help get us over this 'hump', the hospital has allowed me to stay with him throughout the past two nights as it helps him to know I am close by... although the nights have left me without any real sleep, I find comfort in that I can at least kiss his forehead and hold his hand... it is extremely difficult to write or speak to anyone as it seems that all conversation gets mired from my tears...

So, with all I have, I again will rely on all those positive vibrations/light/love and prayers that you can muster to send. and I thank you, in advance, with all my heart.

Have sought a brief refuge in my friend's room that I am staying in while away from home... showered... laundry done... repacked and with a deep breath... I go to the hospital where I get to stay another night with the man that holds my heart.

So... don't hesitate... reach for someone you love and tell them that you love them... and hug them with your warmth.

PS... Here's to a better night ahead...

Love...

Katherine

Mini Update - December 12, 2022

The past several weeks (since the update of Nov. 18) have been nothing short of a roller coaster ride. Several days after the second surgery, a hole developed at the back of Mark's mouth (roof) flap (surgeons believe that some sutures may have broken when Mark coughed after surgery) ... another surgery is required...

Additional to dealing with every aspect of major surgery aftercare following this second surgery, Mark was additionally traumatized by extensive, non-stop (24/7 for twelve days) delusions and sleep deprivation... I was again allowed to stay a couple of nights and truly... it was nonstop... the staff (talk about an amazing staff - at every level) too helped in that we were all basically participants in the 'movie'... an emotional ride for all and one I will surely never forget... oddly, neither does Mark as he can retell it all scene by scene (he even wanted me to keep some of the papers he was writing on as you have to realize he couldn't talk well as he was talking through his trach - breathing tube in the neck - which was uncorked at that time... should make for some interesting conversations in the future).

To get Mark off the feeding tube, we were extremely fortunate to be urgently pushed to the front of a very long (months) waiting list to have a custom prosthetic designed to fill in the hole so that Mark could at least consume nutrition/food through his mouth... this device is only a temporary fix as Mark is not physically, mentally or emotionally able to take on another surgery (to be honest, neither am I), at least it will afford enough time to get us home for a spell and recharge before the next battle... the device was a success!

I almost hesitate and have to gulp, however, I am so very honoured and grateful to have the privilege of getting to drive us home tomorrow... finally... YAY!... we know that we have much farther to go (truly... our entire life has changed in a near instant) and many more battles to fight however we find so much delight in just 'walking barefoot on this grassy hilltop'.

Our hearts are so very grateful to all of you that have rooted for us with your prayers, light, encouragement and love... you have filled our hearts to overflowing and I am lost to find the words worthy of your efforts so will simply have to say... thank you... thank you one and all!

There will be more updates coming, however, we would like to take this opportunity to wish everyone every bit of magic that this Season provides... fill it with all that gives you and yours joy... fill it with all that is uniquely you... fill it with love...

WIth love,

Katherine

Mini Update - the 'war' continues...

We hope that everyone found joy and good health throughout this past Christmas and New Year 2023. Although our Christmas was somewhat bleak in every respect, we were overwhelmed and so very grateful to arrive home to find an evergreen wreath on our front door, a freshly cleaned house, a fully stocked fridge (and cleaned too) and a twinkly Christmas tree grouping with a few presents underneath in our living area... a BIG THANK YOU (which seems inadequate to say the least) to Susan, Stan, Rachel and Billy... you showed us the real meaning of Christmas as our hearts were filled to overflowing.

Almost six weeks have passed since my last writing so thought it was time for another. After nearly six weeks spent in the QEII hospital in Halifax, the prospect of being at home was all we had wanted for so long. Although so grateful, the reality of being home again has been a rather tough pill to swallow. Everything about our daily routines changed and one almost feels like a 'stranger' in their own home. From the daily mobile nurses, pureed foods (even had to take five stitches myself preparing the same one night), twice daily self-administered injections... nothing is the same anymore.

Mark continues to improve in strength and has gained weight (must be those DQ Blizzards he adores )... his bone graft on his lower right leg is healing well although will take quite a while longer... his graft wound on his upper left thigh has been difficult... a ten-day course of antibiotics helped it heal however this morning it had reversed course and may require more. Mark had his 'mask' markings done for radiation therapy several weeks ago, however, because there is a separation at top of the eye flap (is considerable now), the oncologist required us to see the surgeon in Halifax before proceeding... so 11 days ago we traveled to Halifax and received approval to commence... back home we go. Another appointment for mask markings this past week was required because of the lapsed time since the initial visit (not fun for Mark)... it was after that appointment that we were advised our oncologist wanted to see us before we left for home. It was later in her small office that she explained a recent consult conversation with the surgeon had resulted in the recommendation that chemotherapy is included in the treatment plan. We had been advised previously that radiation would be the only therapy required due to the location of the tumor and a Pet Scan that did not reveal spread to other areas. Another gut punch... however... the reality is... what choice do we have. Mark has shared that if he had known the depth of horror of this whole process, he would not have sought treatment in the first place... so when I hear this... my heart shatters... again. So yes... the war rages on.

Treatments will commence on January 30th and we are attempting to prepare ourselves mentally, physically and emotionally, It has been our experience throughout that every time we heard the odds of a 98% success rate... we ended up in that dreaded 2%... we feel like we have become "Masters of the Crevice"... so staying positive is truly one of the most challenging aspects of this entire ordeal.

Personally... most of the time all I want to do is cry... hit something... or run to hide under my 'leaf pile'... yes... staying positive is so very difficult however the alternative is not acceptable. Waking very early each morning, I have made it a daily practice to just sit in silence... to find that calm water in my mind's eye so that I can digest the reality and embrace even the rough bits with somewhat 'grace'... I cannot run away... I cannot hide... and I must... breathe through the pain that I find the light in even the darkest of moments.

For that is truly all we have... moments... so the words 'acceptance' and 'gratitude' ring throughout my days as I strive to continue to grow in the best version of myself... for Mark... and for me too. Once again, we take this opportunity to thank everyone for your continued light, love, prayers and encouragement for without, well... don't even want to think about that prospect. We wish you all a wonderful day ahead and hope that you can live your moments like they were your last.

Love to all,

Katherine