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

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

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

Yesterday I was reminded that I am not alone. Oftentimes, I write my blog wondering if it is read, who reads it and is what I write pertinent to others. A while after I posted it I received a beautiful email from a lady whose husband had a transplant in 2005 and going through GVHD. Many people have transplants, but I don’t hear much about or from people with chronic GVHD that affects our quality of life. That part is what makes me feel alone. I think we just adjust, adapt, and move on with a new normal and forget that there are others struggling through similar challenges.

This wonderful lady actually took the time to reach out to me and that in itself touched my heart. At a time when I needed it the most her kindness lifted my spirit. Thank you K. for touching my soul and remind me that our new ‘normals’ is in constant flux, constant change and that’s why we need to adapt as we go along.

On the same note, today I received a most generose gift from another friend. Her generosity has humbled me and reminded me that I have amazing people in my life that care about me very much. It wasn’t the gift as much as the attentiveness to details, the listening and understanding everything I’ve been saying and tha in itself lifted my spirit.

I can’t say thank you enough for making me feel loved and reminding me that life is worthwhile and keeping my head high and staying strong is what matters. Allowing me to be myself and expressing my emotions, good or bad, is okay.

The generosity of people always surprises, humbles and touches me and I feel very blessed.

We must remember to be adaptable to change, accept that the’new normals’ will constantly be different from our expectations, we must let go of our old life and learn to live with new goals and new dreams.

I’ve come to accept that perhaps there is a wheel chair and walker in my life and that I might not be able to do many of the activities I used to and I’m ok with that. I will adapt.

Marie-Chantal

We are waiting to hear back from the radiologists to see if they can do another vertebroplasty. However, the Spine specialists have also been contacted to make sure that all this ‘patch work’ doesn’t affect the dynamics of my back and think ahead of what all this work will do to the rest of my back.

My main fears are whether or not my spine is so fragile that this will keep happening and will be a common recurrence. Will I need assisted living, will I see home again because of the stairs, is all this hard work worthwhile…. I do want to keep on living, no question about that, but the price is pretty darn high as far as the quality of life, or lack thereof.

I’m scared, anxious, overwhelmed, stressed out. I’ve acepted that my life is permanently changed and I will probably never be able to do the activities I used to do, but right now, I just want to walk, be strong, go home and be independent a while longer.

Buying a wheelchair is now part of my reality, perhaps even a hospital bed. Moving to an adapted apartment is no longer an option but a necessity.

Independence, is that in itself a reality or a dream I should slowly let go?

Marie-Chantal

Yesterday’s procedure was much less painful than the lower lumbar of the first procedure. In fact, I slept through most of it. I was awake through the preparation but I had advised the anesthesiologist that I had vomitted last time so this time around she increased the anti-nausea and pain killer meds, which explains why I slept through it all.

My back will always be fragile so now I need to learn to be preventative about it and not put it through undue stress. No heavy lifting, vaccuming, washing floors, reaching up, reaching down, reaching out, turning abruptly, no weird movements, no sudden moves. It’ll have to be a balance between building core muscles without straining it. My physio is working with the spine people to come up with the perfect exercises.

In the meantime, I will need to find an adapted apartment, avoid stairs, avoid very high and low cabinets, housecleaning, putting out garbage, laundry, dishes for a while, as well as sitting and standing for extended periods of time. A housecleaner will no longer be a luxury but a necessity. Getting new fractures will be part of my ‘new normal’ so I’ll have to adapt to that and be as preventative as possible. Every movement will need to be thought out before doing them. We’re not talking “ouch, my back hurts, give me a Robaxazet”, we’re talking preventing fractures until my back is strong enough.

All in all, I’m doing well. Looking forward to be on the road to recovery and going to rehab then home. Another few months and home, here I come. I will only go home once I am 100% ready. I am not setting myself up to a repeat performance of all these past few months of hardship.

I am also glad to say that my prednisone level is down to 9mg. We are gradually decreasing it and all seems good so far. The lower the dose the more chances we give my body to recover from the steroid side-effects. It will take time to get rid of the toxins but it’s a good start.

This will all tie in to all the darn extra expenses (housecleaner, meals, meal prep, laundry, home care (washing and getting dressed), daily living equipment, wheelchair, walkers, grab bars, bathroom stools, transport, rehab equipment, moving expenses…

I thought I needed help before, now there will be no denying it.

Marie-Chantal

Then what? Then I heal (not sure how long that will be) and start the rehab needed to be well enough to apply for the GF Strong rehab center where I work even harder to get back home. With both the lower and middle back fixed, I should be able to concentrate on building muscles, regaining the use of my legs, and be able to walk on my own and climb stairs again.

I’m ready for the work and the rest and finding a balance between them both. I am also somewhat scared and nervous. I don’t want to think of any other complications, I just want to focus on getting better and going home.

This is when I will need the most encouragement and support. My moral is fragile, I will admit to that. I want to go home. I want to be able to live my life once I get home. This journey is difficult and my energy is low. I don’t want to go through this again. Once I’m back on my feet I want it to last. I want a ‘normal’ life. Like everyone, I just want to be happy and not constantly worry.

Marie-Chantal

I’m surviving cancer, a stem cell transplant, GVHD, complications from the life-saving meds, so now what? I’ve already been through the steroid myopathy where I needed to learn to build muscles and learn to walk all over again. Here I am, yet another complication of steroid use has me hospitalized for months again, awaiting surgery to repair compressed and fractured disks in my spine, deconditioning my muscles further, after which I’ll be going to a rehab center for a few weeks/months.

This process has had me hospitalized longer than I have been home since January 2012. I’ve been in hospital for more than 8 months, not counting what’s to come in terms of rehab which might be a few more months throughout which bills still accummulate and need to be paid.

There are a lot of misconceptions about cancer in general, blood cancer in particular and chronic long-term illnesses. Not all cancers are the same. Blood cancers take a different toll on the body than tumor cancers since you just don’t get surgery and chemo and that’s it. Not that tumor cancers are less dangerous and less intrusive but less is known about blood cancers. Some people need transplants some don’t. Even transplants are different according to the type of blood cancer and/or the person themselves.

Some blood cancers have long term effects some don’t, but all are life changing. They change your body, your spirit, your take on life and how others perceive and treat you.

Blood cancer can change into other cancers, it can be affected by GVHD and affect a whole bunch of organs such as in my case (eyes, nose, mouth, digestive system, gut, liver, lungs, skin, spleen…) muscles and bones. Digestive system and liver issues were life threatening for me and liver still a huge chronic and acute issue and will be for along time. Eyes, nose, mouth, skin chronic issues right now on-going for years. And, skeletal and muscle issues for the past year. I am severely immunocompromised which on top of everything else makes returning to work a huge unknown. So, now what?

My income is chronic illness CPP (government retirement fund which means I still have to pay taxes) and chronic illness insurance from my work benefits. My income is very limited and barely covers my living expenses not to mention the additional costs that come with surviving cancer and living with a chronic illness.

Lots of people raise funds for research for all types of cancer, illnesses, chronic isssues, basic patient services but nobody, no organizations or government funds cover the daily living expenses of someone living with a chronic illness for years.

No thought is given to the socio and economical personal burden of blood cancers, especially those with long lasting effects. All cancers have a huge emotional impact but let’s not forget that life goes on around you, old and new bills accumulate and money is tight. That for me is a huge impact that no one thinks or talks about.

Once I’m done dealing with the health issues, I will not be able to work for a long time so as I am worrying about recovery and healing, I also worry about bills and having enough money to provide for my needs on a daily basis. This of course is not covered anywhere but is part of a patient’s journey and financial stress.

Money raised benefits much needed research in understanding the diseases and discovering new drugs. But beyond that, we’re on our own financially.

I know many people that are going broke from traveling back and forth and from having to find accommodation near the hospital while dealing with their illnesses. I personally no longer have savings, retirement funds and all my credit cards are maxed out.

Beyond meds and living expenses, there are also all the additional things we need in our daily lives such as my dry mouth and dry eyes necessitate special toothpastes, tooth brushes, mouth wash, preservative-free artificial tears all $15 ea on average so that’s monthly. I need special pillows, grab tools, cushions, silk pj’s to help me in and out of bed due to lack of muscles, special creams for my paper thin skin…etc. There are so many things we need as chronic patients that most people don’t realize.

Much of the equipment needed is not covered by our insurance companies such as home care and actual equipment. I need a hospital bed at home, not to mention stools, walkers… I need someone to do laundry, put stuff away… Help around the house other than the obvious washing and getting dressed which is the only thing home care covers basically.

Our needs and requirements are not all met at the hospital either which means we need to buy stuff even when hospitalized.

I’m alone out here in Vancouver and I will not be returning to work for a long time. What am I supposed to do to make ends meet financially? I intend to have a huge garage sale to raise money for myself but I don’t think it’s fair. When to day comes that I am alowwed to travel, I’ll want to travel to go see my family at the other end of the country. I can’t afford that. Same for my family to come visit me.

I think donations and money raised should be geared towards research but most importantly some of it should be put aside for patients and their immediate needs.

As a highly immunocompromised patient I will need a car for transport outside my regular appointments. How do I pay for that? My family cannot afford to buy me that.

My body has changed so much that I’ll need new clothes and shoes when I get out.

Meals are expensive but I won’t be able to cook for myself for a while to come, so that’s an added expense.

The socio-economic financial hardship is the most unexpected for patients with chronic illnesses. People don’t realize that but it’s a huge stress. I firmly believe that some of the money raised should go towards helping patients that way too.

Last year when I was hospitalized with various acute GVHD it would cost me from $200 to $500 a month to supplement food the hospital couldn’t provide to meet my needs and toilet paper because of the diarrhea which the one here would tear my skin. Being in hospital for months is very expensive and once out those expenses increase tenfold.

This is what people and organizations don’t realize. Perhaps corporate sponsorship is needed in order to better improve patient services.

I don’t want to go bankrupt because I have leukemia/lymphoma and long-term complications. Medical and private insurance and CPP don’t cover all of our costs and that is the sad truth.

I’ll need to raise money for myself when I get back home. Perhaps patient services should be more focused on our reality.

For instance, many patients and their family need to travel here from all over BC which is highly expensive and they have to find apartments or stay in hotels for months. None of those expenses are covered and they are the most obvious ones. I believe there should be special funds allocated for cost of living (no pun intended). Actually, living is the most expensive cost for patients.

I’ve mentioned it before. The truth is, unless someone goes on tv to plead their case, or have their friends and family or community raise funds for them, how do we get enough money to live?

It needs to be said again, cancer is easy, living is difficult. So get ready for upcoming personal fund-raisers once I get back home. I need to set my ego aside and come right out and ask for financial help.

Marie-Chantal

For instance, take 2 runners. One you know will most likely win the race, the other who will be struggling much more and will put themselves out there using all their energy, stamina, will power and try really hard not to give up. Whom will you cheer on?

In a marathon, do you spend all your time encouraging the sure-entry winner, or do you root for the under dog. I know people don’t know what to say when times are tough but that’s when we need the most support. When things are progressing as they should it’s good but how useful is it to state the obvious? A pat on the back for something obvious is not as beneficial to me as a word of encouragement when it is needed most when I am depressed, discouraged, sad, scared, tired, exhausted, emotional.

Most of the time, if I am a long time without sharing it’s because times are tough and I need encouragement or I need help. The reality? My back hursts like crazy, the pain makes it difficult to breathe and move and makes me extremely nauseous.

Same thing with follow through. Dare I mention it? If someone says they’ll do something by a certain time please make sure to let me know if it will or will not get done. I am alone, day in and day out, staring at the same walls and when someone say they are coming for a certain time I aam looking forwardd to it. When they don’t show up, I get disappointed.

I get the feeling people don’t want to know what my reality is. If it’s all good then that’s ok, if things are hard, then they’d rather not know the reality. It’s not always silver lined.

Marie-Chantal

I am glad to say that the diabetes is doing much better and I have not needed any regular insulin in a few months, only the long lasting daily shot. Perhaps with the continual tapering off of the steroids I will see a return to normal without diabetes at all. That would be sweet!

The thyroid issues seem to also be behaving themselves. I’m on a few antibiotics for a coupe of lingering infections but nothing we can’t handle.

The liver is stable, not pretty and still high enzyme levels but stable enough so we can deal with the other more pressing issues of pulled muscles.

I still have the dry/blurry eyes, dry mouth issues but you learn to live with it, strangely enough.

On a funny note, my hair is growing back and I think I am happy not to have a mirror to see myself regularly. It is patchy, dark in front and the back, whitish on top and sort of wooly. I dare not examine it too closely but it feels like I have something on my head (which of course I do, it’s called hair). I’ve been so long without it (Feb 2012) that I’ve forgotten what it feels like.

Strength-wise, I seem to be progressing on a daily basis which is great. I walked to the end of the hallway today which is 1/4 further than yesterday. One step at a time, one day at a time shows progress. I still need to rest a lot since I fatigue very easily and they still need to figure out the pain and nausea medication but we’ll get there and find the balance.

Speaking about balance, I am aware of the multitude of people reading my blog, some from far away, some closer to home and I fully appreciate them/you all. Thank you for taking the time to write back. Even those of you that don’t comment, I know you read me and that in itself is very gratifying and the reason I blog.

On this note, there are comments from some of you that have lost a dear one and are in pain and looking for a venue to vent out your frustration and anguish. Venting is fine but perhaps finding another venue with people going through what you are going through would be most appropriate rather than wishing their loved one would have preferred to go through what I am going through rather than having their own life shortened. Comments like that will not bring your parent back, whom I assume had a long and happy life surrounded by you, his family.

I am fully aware that some people are worst off than me, have lost friends to lesser complications, and feel guilty enough about it, but implying that I should be thankful for my journey (I’m 44 yrs old) rather than the alternative is not the most positive thing to tell someone. Everybody is too young when the time comes but please, never tell them that they should be thankful for their struggles with any type of diseases and or/ challenges. That comment did hurt me.

I think many of us blog to create awareness of our journey and feel less alone as well as inform people of the reality of our situation and dispel misguided information.

This is my journey. It is not better or worse than anyone else’s, it is my reality that I share and I do not compare myself to anyone else.

That’s it for now. Will update when I know more about the vertebroplasty.

Marie-Chantal