Choose Happiness – 1 June 2014

I’ve always known the importance of living in the moment, enjoy life, do what makes you happy.

In the face of adversity this can sometimes be challenging but at the same time, it is the perfect opportunity to choose how you react to situations. Often, your reaction and behaviour are the only things you can control. Shawn Achor always advocates that we have the power to change reality around us and that we can consciously choose happiness.

Maya Angelou has said that “Surviving is important, but thriving is elegant.” She also strongly believed that we must take care of ourselves first and foremost and that adversity has the opportunity to bring you something better down the road.

These two people have greatly affected me and influence how I choose to live my life.

One major thing about living with all these challenges in my life has been to feel like I matter, that I can make a difference, that I can contribute. I feel that I am at an impasse, a transition, a standstill. I can no longer do what I used to do and I am still mourning my old life. Adapting to a new life is essential but no one said it would be easy.

Photography has been a huge part of my life for nearly 30 years. It is my passion, my joy, my refuge. Although I have been documenting my journey through photography, not much creativity was needed to do so. Creativity was also not something I had the energy to tap into as I was striving to stay alive on a daily basis.

Now, as my medical health is stabilizing, it frees up energy to want to invest in my new life. What do I want? What does it look like? How do I go about making it happen? What would make me happy?

I have discussed this with my occupational therapist and she agrees that I need to resume tapping into my creativity and use it as a means of expression. Not only will it bring me peace and provide me with the sense of contribution and living life right here, right now, instead of simply surviving, but above all, it will allow me to express myself and link my old life to my new situation.

Physically, I no longer have the muscle strength to hold my professional cameras. My point and shoot camera is obsolete and my phone camera is inadequate. I definitely cannot afford to buy a new camera but I do want to resume my art. I always say ‘think outside the box and find solutions’. After much consideration, I have found a solution.

For years I have been accumulating Airmiles for trips that might or might not happen. I have not been able to travel for years, and medically, will probably not be able to travel for years to come. Therefore, instead of planning for ‘wants’ that might not happen, I can plan for ‘needs’ that I can enjoy right now and which will contribute to my happiness. I have chosen to use part of my Airmiles to get a camera system that suit my current needs.

An opportunity came up with a promotion that Airmiles was having for gold card members for a lesser points rate, where the camera suits all my requirements, and it’s cute too, and shipping and taxes were all included. Therefore I thought this was the perfect opportunity to invest in my happiness by allowing me to tap into my creativity again at no financial cost. I am so excited by this. Now the hardest thing is waiting for the delivery of my new toy! 🙂

I feel good about this. It doesn’t mean I have given up on my dream to travel, rather it means that I can do something right now to enjoy my new life. Photography has always been a huge part of my life and I am excited at the opportunity to resume that part again. I have chosen to put myself first and made a conscious decision to be happy. And, I will also be able to start selling prints again. Win win.

Being excited about something feels amazing.

Marie-Chantal

Posted in Healing Process | Leave a comment

Donations for Marie-Chantal, helping in my recovery and healing – 29 May 2012

I find myself on an uphill road to recovery and healing from blood cancer (Chronic Lymphocytic Leukemia and Transformed Non-Hodgkins Lymphoma), which so far has been long and arduous and appears that it will continue to be such for a while. Surviving cancer and complications from a stem cell transplant, along with various life-threatening on-going GVHD challenges, has been quite stressful. However, when these issues become chronic, long-standing, doesn’t-seem-like-it will-ever-end challenges, it can become quite overwhelming.

After years of being in and out of hospitals and rehab quickly depleted all my savings and retirement funds. Being on a fixed income, which barely covers the cost of living, doesn’t leave anything for the added expenses of living with chronic issues. I require expensive specialized personal items for my skin, eyes, mouth, muscles, gut, bones, liver and bladder issues, adapted transportation for my multiple weekly medical and rehab appointments, rehabilitation tools and equipment, outfitting my home to meet my adapted needs for my limited mobility, wheelchair accessories to meet my medical needs, walking equipment, food meeting my special dietary requirements, meal preparation, cleaning service, pharmacy fees and supplements, any fees and expenses not covered by my insurance company, shoes and clothing that fit my ever-changing body due to edema and steroids has become quite overbearing. I am still trying to catch up from my unforeseen and unplanned move this past November. Never knowing how I will make ends meet each month, pay for my expenses, transport, bills and rent has turned into an overwhelming added stress.

Some of you have already generously helped me out. However, I am embarrassed to say that I still require help to get myself out of this financially challenging situation. The stress of being on my own and having to take care of everything is definitely affecting me as well as my recovery.

Much fund-raising is done for various cancer research, which is greatly appreciated as it does make a difference in finding new medications and treatments. However, none of it trickles down to us, the people directly affected by cancer which not only threatens our lives, but affects our quality of life on a daily basis. I wish I could devote my energy towards healing rather than losing sleep over bills and expenses. I am therefore turning to you my family, friends, colleagues, and supporters in helping alleviate some of this financial burden. Any amount, big or small makes a difference and is greatly appreciated.

Here are various ways you can help out:

PayPal (you do not need an account to make a donation)
Bank E-Transfer to my Royal Bank chequing account

My email for both payment methods is: mariechantalm@gmail.com

You can also check out http://www.mcmarchand.myevent.com

I am also working on a Donation button on my Blog website at http://www.mariechantalmarchand.com

Again, any help is greatly appreciated. Even donating the price of a coffee makes a difference.

Thank you for your generosity.

Marie-Chantal Marchand

Posted in Financial burden, Healing Process, New Normal, Updates | Leave a comment

Recap of my journey so far – 29 May 2014

Here’s a recap of my very interesting journey. So much has happened even I forget sometimes what I’ve been through. I was diagnosed with CLL (chronic Lymphocytic leukemia) in July 2009. Normally, this is a slow progressing disease. We quickly found out there was nothing normal about this one. Come May 2010 the first symptoms appeared which would change my life forever. Steroids worked for a few weeks to diminish the swollen lymph nodes but then it all came back stronger. This was one mean CLL, nothing ‘normal’ about it.

Through various tests, it was discovered I had TP53 with 17p deletion, a chromosome abheration providing a very poor prognosis, making it difficult for the body to respond to treatments. I began a 5-drug chemo protocol in August 2010. I responded negatively the very first treatment, which sent me in deep rigors requiring me to be hospitalized. Not a good start. We subsequently tried a few more treatments but come October 2010, I ended up in the hospital with a 104-degree temperature and severe rigors again. After a month in isolation and ice treatments, they realized the disease had transformed into Richter’s Syndrome, also known as Transformed Non-Hodgkins Lymphoma, another aggressive disease with a poor prognosis. I received an even stronger chemo protocol to try and keep subdue the disease until we could turn around and figure something out. There were a lot of strikes against me. The only thing at that point that would save my life would be a stem cell transplant.

We began searching for a donor. There is usually only a 20% chance your siblings will be a match. That year, I received the best Christmas gift ever as my only sibling, my brother, turned out to be a match. I began a new chemo protocol to get my bone marrow ready to receive stem cells that would hopefully develop into a strong and healthy new immune system, devoid of diseases.

My brother was given various doses of GCSF, a drug to increase the quantity of stem cells, which were collected from his peripheral blood and given to me in a 30-minute infusion on February 26, 2011. Now the hardest part began, waiting to see if it worked.

Come June 2011, the standard 100 days post-transplant benchmark, all tests demonstrated that my bone marrow showed a very successful rate of being 96% that of my donor’s and that a new immune system was forming itself. There were still chances things could turn south, or that I could develop GVHD (Graft versus host disease where the new immune system reacts to your own body). A little GVHD is a good thing, as it would boost the new immune system and jump start it, but there are a lot of unknowns still to this day and it does have the potential to be life threatening. Things were looking up. I was doing well, was feeling good and actually managed to hike up a small mountain in September 2011.

GVHD slowly began manifesting itself in October 2011 in the form of dry eyes, dry mouth, itchy skin, higher than normal liver enzymes. It was nothing too severe but enough to be annoying. The steroid Prednisone, taken during chemo to stabilize side-effects and taken as part of the regular regiment of daily medications post-transplant, was increased to see if the GVHD could be managed.

Come January 2012, I experienced a relapse of Richter’s Syndrome (Transformed Non-Hodgkins Lymphoma) which was definitely not a good thing and we needed to move fast. All my immunosuppressant meds were stopped, including Prednisone, in the hope that the new immune system would take over and create a Host vs Disease effect where the new immune system would see the disease as foreign and get rid of it. My new immune system went ballistic and treated everything (me) as foreign and attacked it all.

A few days after stopping the medication, things went from bad to worse, requiring me to be hospitalized, back at the Bone Marrow Transplant unit at VGH. I went from mild to medium chronic GVHD symptoms to severely life-threatening acute GVHD of the mouth, digestive tract, gut and liver. I was unable to eat for 2 months, requiring feeding tubes; then my digestive tract and gut began bleeding profusely, internally and externally, requiring an inordinate amount of tests and procedures until they were able to find the source of bleeding after a few weeks and staple the lesions that had erupted in my gut. And, the worst of all, liver GVHD which brought me to the brink of liver failure, at which point I had a DNR on my file since there would have been nothing left for them to do to save my life. Miraculously, my liver enzymes began stabilizing and I was finally removed from the critical status after a few months. Along with all these acute GVHD issues, I also experienced a multitude of infections from many bouts of pneumonia, pulmonary edema, blood infections, numerous episodes of E-Coli and C-Diff., edema in my legs, steroid myopathy…

To this day, we are not sure how I got better as the doctors were doing their best in unfamiliar territory. Everything was a shot in the dark and hope for the best scenario. We all had to adapt along the way and overcome the curve balls as they were thrown at us. I do think however that the support from friends and family had a lot to do with my recovery. Yes, my attitude and behaviour had something to do with it but love and support is also a huge integral part of healing.

After 4 months of being bed-ridden and immobilized, and from the very high doses of steroids, I lost muscle mass and had to begin physiotherapy to learn to walk again. I was sent to the Transitional Care Unit at the UBC Hospital. Unfortunately, during one of my physiotherapy session, through a moment of inattention from the physiotherapist had me falling and injuring my left leg, which would set me back a few months on my road to recovery. After a lot of hard work, I was finally able to climb stairs again and returned home in the summer of 2012.

At this point, the high doses of steroids I was taking to keep the various GVHD under control, had begun to do severe damage to my body, amongst which is severe osteoporosis. All the effort needed to learn to walk and to care for myself at home translated into fractures in my spine and compressed disks which culminated in no longer being able to get out of bed. On November 14, 2012, I was hospitalized again at VGH.

Over the course of 3 months I received 3 vertebroplasty surgeries to repair 9 compressed disks and multiple spinal fractures. Yet again, I had to learn to walk and this time, I was sent to the spinal department at GF Strong Rehabilitation Centre.

In the meantime, another issue brought about from long-term use of steroids, is the thinning of my skin, making it very fragile and highly susceptible to tearing, bringing with it the risk of infections.

While at GF Strong, I needed an arterial ultrasound to make sure there were no blood clots in my legs. Even after fair warning to the technician that my skin was very fragile, she unfortunately pushed too hard on the ultrasound probe and tore my skin in my right groin. The test was done on July 31st and the next day, I developed a rash on my right thigh. At dinner time it had doubled in size and an hour later I was being transported by ambulance to the emergency at VGH where I was assessed by a whole team of specialists, from surgeons to disease control. At 9 pm I was being wheeled into emergency surgery where I was told they would do all they could to save me, and hopefully save my leg. They suspected necro-fasciitis (flesh eating disease). I made the normal ‘I might not make it’ phone calls to family and friends. This wouldn’t be the first time I did this and yet it still remains quite surreal.

They opened my right leg from mid-thigh to mid-calf and were able to get the infection. Now, although happy to have made it through with my leg still attached to me, it is deeply and severely scarred and currently overtaken with edema, making it quite stiff and painful. Again, it set me back and I had to start physio all over again, one step at a time. Except this time, the combination of leg surgery with back issues meant that I now needed a wheelchair to get around.

I was at VGH for a few months after which I was sent to the Transitional Care Unit at UBC Hospital again. This time, it was taking my body much more energy and effort to climb back up the rehab hill to recovery. In fact, the doctors were convinced I would not be able to climb stairs again and was told that I had to find a new place to live as my apartment had 4 stairs to climb to reach it. I would not to able to be discharged without finding a wheelchair accessible apartment. Therefore, in the fall of 2013, from a hospital bed, I had to look and find a wheelchair accessible apartment and organize a move. Thankfully I received a lot of help from many friends, without whom I would not have been able to do any of it.

My move was done on November 1st, 2013 and on November 14th, one year to the day I was admitted in 2012, I was finally discharged from the hospital.

However, 6 days after being home, I unfortunately got another skin tear which became rapidly infected and within a few hours I was again on an ambulance, making my way to VGH Emergency for another life-saving surgery but this time on my left leg. Yes, necro-fasciitis was yet again suspected. Except this time, I didn’t make any phone calls. Why bother? If I was going to make it I would let people know, if I didn’t make it, the hospital would call them. Although the surgery went well, the waking up part of it was problematic. It took them a few tries to get me back. I was in ICU for a few days with breathing tubes and numerable tubes and wires sticking out from everywhere, connected to various machines. I was finally discharged on December 5th, 2012.

Not only did I have to get used to being in a new apartment but I now required the use of a wheelchair to get around. I now have to rely on people like never before. As with all chronic health issues, my support system has considerably diminished and if it weren’t for the help I receive from the Community Home Care, I would be alone to take care of myself. Since I do not yet have the strength and energy to do that, I would be in serious trouble.

I have had to get used to being at home and no longer be surrounded by hospital staff to help me in case of need. I’ve had to get used to a new environment, a new body, new limitations, new fears, added expenses, added challenges and struggles. On top of it all, I still have things to put away from the move back in November for which I need to wait on people to help me with since I cannot do it on my own. This is all very frustrating and discouraging. I still have to get around to all my multiple medical, physiotherapy and occupational therapy appointments.

I have resumed my physical and occupational therapy at the GF Strong Rehab Centre as an outpatient. This time though I am starting from scratch and have to rebuild every single muscle in my body from having been hospitalized for a year. I need to rebuild all the big muscles that help me stand up, walk, hold my head, lift my arms but also all the tiny ones that enable you to grasp things, get dressed, get washed, brush your teeth, spit, wash your face, prepare meals, swallow, cough, control your bladder, get in and out of bed, a chair, the toilet…. I still can’t get up from a surface lower than 17 ½ inches. On a good day, once in a while, I can do 17 inches but that’s a lot of hard work. This means that I am unable to go to public places for longer than a few hours in case I need to go to the bathroom. And yes, when I have to leave home for longer than a few hours, I need to wear ‘adult underwear’.

Steroids have considerably damaged my body, inside and out, and the road to recovery is long and hard. I still have chronic multi-organ GVHD issues with my eyes, mouth, skin, liver, muscles, bones, lungs, edema, cushionoid trunk and face, fuzzy brain, difficulty talking, mobility issues, muscle loss, bladder issues, difficulty healing wounds, extremely prone to potentially life-threatening infections…

In the past 4 years I must have aged a good 20 years. And no matter what everyone says, appearances do matter and any drastic changes you experience does affect you.

Trust me, almost dying numerous times over the course of a couple of years is very stressful and traumatic for the body, mind and soul. It has gotten to the point where I have almost become complacent about it. Been there, done that, should get the t-shirt. Making my way to the hospital, going through life-threatening issues with no one holding my hand to comfort me is hard. Being discharged by myself is my reality and I am able to handle it but it doesn’t make it easy. Having the strength and courage to do something doesn’t mean it doesn’t chip at you and take a piece of your soul each time you have to do something so drastic on your own.

The first few times you’re all gung-ho and ready to take on the world, give it all you’ve got, no matter what. After a few times, you figure what will be will be. You still fight and hope for the best but you’ve realized how little you control. I can only control my response and behaviour to what happens to me, but I don’t really have a say in how it will turn out. I can’t control if I’ll die on the operating table, or, as people love to say, you don’t know if you’ll get hit by a bus! Ugh, I hate that expression.

The loss of autonomy and dignity is very difficult to get used to, along with mourning your previous healthy body, your old life. I have become fragile in every way possible. I appear and perhaps I am strong, but my body, my psyche, my soul have become fragile. Yes, trust me, I know I have to adapt, and I have, I am. But having people telling me I should be glad to be alive is slightly ignorant on their part as they do not realize the cost involved and how challenging it is. I would never wish this on anyone and yes, I know some people are worse off, but please, do not speak of something you cannot relate to. Words are powerful and hurtful when spoken in ignorance.

Today, I am a completely different woman, changed physically, emotionally and psychologically. I am living a life I never imagined. In a little less than 4 years, I went from being young, vibrant, active, full of life, to struggling with daily challenges, adapting to a ‘new normal’, striving to heal and finding meaning to every aspect of this new life. Almost dying 5 times gives you a different perspective, to say the least.

What have I learnt? Be true to yourself. Life is too short to put up with crap. Do what makes you happy. Talking to hear the sound of your own voice is annoying. Only talk if you have something useful to say. Don’t make stupid or ignorant comments. Be respectful and thoughtful in your actions. Help others and be genuine about it. See the beauty around you. Laugh and enjoy life.

Posted in Healing Process, Home Challenges, Hospitalization, Immunocompromised Issues, Mobility Issues, New Normal, Side effects of long term steroids, Updates | Tagged , , , , , , , , , , , | 7 Comments

Vancouver BMO Marathon 4 May 2014

I have been busy recovering from last year’s challenges, both medical and physical. However, here is a huge goal that I exceeded yesterday.

My team and I, Team MC, part of Team Finn, did the Vancouver BMO Half Marathon yesterday. It went well despite all the rain. Here in the link is a photo of Team MC crossing the finish line. It’s from the local paper Metro Vancouver.

http://metronews.ca/news/vancouver/1022529/photos-runners-race-despite-rain-for-bmo-vancouver-marathon/#link-to-full-image-for-nojs

You can also see more photos on my facebook: https://www.facebook.com/media/set/?set=a.10203857563018842.1073741827.1213548675&type=1&l=043c99e409

Perhaps next year I will be able to do more than just walking the last few meters. But for now, one step at a time!

Enjoy.

A more detailed update of the last year will be posted in the upcoming days.

Marie-Chantal

Posted in Healing Process | 3 Comments

Update – 23 April 2013

A few weeks ago I was transferred to the Transitional Care Unit at UBC. It is far, I feel cut off, and since I no longer have access to a powered wheelchair, I have very limited mobility. I do physio twice a day on week days and I do see improvements. I think perhaps another month or so.

Eyes
I have seen an ophtalmologist last week about my dry eye GVHD and the fact that my vision is very blurry. I have cataracts behind my retina in both eyes which will need to be surgically removed.

Mouth
My dry mouth GVHD is still on-going. It feels like I have burnt my tongue on something too hot. I can’t really taste much and my tongue is rough and very sensitive.

Skin
My skin being paper thin, I need to be extremely careful not to rub it against any hard surfaces as it will bruise, tear and bleed.

Liver
The ezymes are still elevated but seem to be stable and nothing too alarming.

Legs
There is a lot of fluid retention in my legs and they are very large, hard and heavy. It makes it difficult to exercise but hopefully they will return to normal eventually.

Back
My upper middle back is still painful and I must still take massive pain killers which enable me to do my exercises. I believe it is something I might have to live with it for a while. So be it. At least I am able to do what needs to be done to get better

Meds
I am happy to say that we are resuming the tapering off of the steroids and hopefully this will help in managing the steroid related issues and challenges.

Depression
I have been dealing with depression from being hospitalized for so long and having to deal with so many challenges. again, I am persuaded that it is only temporary and I will get better soon.

Isolation
Since I have been in isolation for so long, for years, be it at home or in hospital, I find that I am losing patience with chit chat. I can spend very long periods of time without talking to people and I am getting used to it. I am losing patience over stupid, repetitive questions. I am getting used to a world of silence and lack of interaction. It is becoming my new normal. It is self-preservation.

I find that I cannot rely on people and must therefore adjust to having to wait to be able to do things for myself. Such is life, isn’t it?

Marie-Chantal

Posted in Healing Process | 8 Comments

Skin GVHD – 25 Feb 2013

Skin GVHD has been acting up. My skin is paper-thin and very fragile. Not only do I have lots of bruises and petechias, threatening to open up and bleed, but now I have steroid-induced ‘stretch marks’ which are oozing. They are about 15 cm long and a few cm wide, are whitish and are all around my belly. They look like they stretch the skin so tightly that they’ll burst, and some of them have since there’s been oozing from those whitish marks. Some are bright red around my waist and back and so thin you can see the veins through the skin.

Last week they tried to put special stockings on me to reduce the swelling in my feet and legs. However, it created a blister and that blister burst and bled and oozed for at least a week. Every time something is done to my skin it creates an issue and even on its own, my skin is not happy. When there is an issue, then it takes forever to heal. That’s skin GVHD for ya!

I can’t scratch, I can’t bump against hard surfaces, I even have to be careful when bathing and applying cream. My skin is like phyllo dough, thin, see-through and can tear easily when handled. But on the good side, I’m at 7 mg prednisone which is good. The lower the prednisone dose, the better.

Marie-Chantal

Posted in Chronic GVHD, Healing Process, Immunocompromised Issues, New Normal, Side effects of long term steroids | 1 Comment

Freedom or Chaos – 25 Feb 2013

Freedom or Chaos, sometimes they are different but in this case, they are synonymous. I have an electric wheelchair now which provides me the freedom to move around the hospital and protect my back from too much strain and the potential of further injuries. I can go to the cafeteria, the coffee shop, the crafts area in the cafeteria, outside for fresh air… These are all good things in themselves. However, the controls on the chair are on the left side. I am right handed.

No matter where I go, what I do. there’s bumping and crashing involved. Either I go left when I want to turn right, go forward instead of backwards, throwing my hands up to stop everything is an option but then the sleeve of my bathrobe gets caught in the controls and everything goes awry. It’s definitely not a pretty sight.

I’ve had the chair for a few days now and I’ve yet to master it. You should see me turning around in the elevator – it’s quite disastrous! I’ve crushed a few toes which must hurt considerably since the chair is very heavy. You should see how fast people can scurry up in a small space for fear of getting crushed by the chair.

Going to the coffee shop is interesting in itself. I did have to buy a tumbler because the paper cup was too bad of an option and increased my chances of getting burned drastically. Now I only have to deal with spilled milk. (Sorry for the bad puns).

Trying to ‘sit’ at a table is challenging on its own as well. Chairs get overturned and jumbled. I try not to have too much in my hands otherwise it all gets squished.

There was a craft Fair at the cafeteria last week and I was trying to get closer to this cute hat but of course, I got caught in the table and things came tumbling down. Thank goodness it was knitwear but I felt terrible. Heads did roll and came tumbling down. I mean literally. The hats were displayed on styrofoam heads. Ha! Ha! I was extremely apologetic and the lay (not the display head) was very understanding, but still. I was very glad it wasn’t frames or anything like that.

I tried my luck with the Gift Shop. Oh brother, those were tight aisles. I managed but goodness did I ever bump into display cases. Thankfully all the breakables were far from me otherwise the ‘you break you buy’ rule would have been very costly for me. LOL

However, I did end up spending lots of money anyways. I finally did get a Sock Monkey (I’ve always loved those and I needed the treat). I no longer have free tv so I bought a handful of magazines. I can’t watch Food Network so I bought food magazines instead, even if the selection was very poor (basic American recipes are scary-sounding and not appetizing at all). Wish I had access to better magazines. Maybe on a sunny day, with someone accompanying me, I can make my way outside and to a better store with more selection. I’m thinking ‘Gourmet’, ‘Wine and Food’, ‘Victoria’…

Anyways, I’m delighted the freedom the chair affords me. However I can’t wait for it to be adjusted and have the joy stick on the right side to provide me with better control. Trust me, this would be to everyone’s benefit and be less damaging for everywhere I go and everyone around me. he chair might protect my back but not that wich surrounds me. That’s what I hope. Or perhaps I’m just a bad driver, we’ll find out.

In the meantime, I do my walks and wait for the vertebroplasty which might happen on Feb 27th. Here’s hoping!

Marie-Chantal

Posted in Back pain & fractures, Healing Process, Mobility Issues, New Normal, Side effects of long term steroids | Tagged , , , , , | 5 Comments