Comfort Through Chemistry and Care

20 04 2014

The last time I wrote an update on my health, loyal reader, things weren’t that great. I was weak and depressed, a persistent pain in my leg tormented me and wouldn’t let me sleep much. Leukemia is indeed more active. My situation prompted my doctor to refer me to the palliative care team and our first meeting with them was on Wednesday.

I was looking forward to it, but Erica was worried. After all, palliative care is basically the last stage. Its specialty is taking care of people in the end-of-life process. They aren’t there to cure, but to keep you comfortable until you die. It’s not a very fun thing to consider.

And yet, once we did have our consultation, we were very reassured. Palliative care is much less scary than it seems. Their focus on comfort rather than cure means quality of life over quantity. But the best part of it is how comprehensive it is: it’s not just about relieving physical pain. It’s also about providing emotional, mental and spiritual support both for myself and for Erica, my main caregiver. The latter is very important to me.

My greatest fear on this whole journey has always been ending up in the hospital and dying there away from my home, my bed, my wife and my cats. But the palliative care team reassured us that unless something catastrophic requiring very specialized equipment happens, I can pass away in comfort at home. And that’s not necessarily my only choice.

If I do feel the need to, I can have a bed in their special unit at the L.A. Miller centre. There they have 10 private rooms that differ from hospital rooms. It’s a personal space that can be arranged with almost anything I want from home. The visiting rules are non-restrictive, meaning I can have as many visitors as I want whenever I want. Even pets can visit. Erica can stay overnight with me. It sounds much better than I imagined. Best of all, if I don’t want to end my days there, they still have an emergency bed/room that I can avail myself of if for some reason I need to for a short time.

I still intend to spend my remaining time at home, but it’s good to know the alternative isn’t as sad as I thought.

In the meantime, the palliative care people and my doctor have put together a new medicine regimen that I’ve been following since Wednesday. I now take a bit of steroids in the morning to fight the graft-vs-host effect on my eyes and the rest of my body. I also take morphine pills for the pain in my leg and eyes. Various other pills combat the side-effects of those two. I also was prescribed an anti-depressant in case my mood turns back to despair and some Ativan in case of anxiety attack.

This new regimen just started a few days ago and will need tweaking, but I am very happy with the results. The steroids give me a good energy boost that gets me through the day without wanting to stay in bed for it. The downside is that it weakens my muscles quite a bit, but that’s what my cane is for. The morphine doesn’t seem quite strong enough in dosage to compensate entirely for my leg but a couple of extra “rescue” doses at least helps me sleep soundly at night. The last two nights I’ve had, I haven’t woken up mid-sleep. That hadn’t happened in many, many weeks.

So that is the situation now, a vast improvement in my quality of life in spite of the leukemia gradually doing its thing. It has allowed me to enjoy (in a reasonable manner) my friend’s bachelor party and will me the mental and physical boost needed to participate in the wedding next week. After that, I will happily enjoy however many weeks or months I can with those I love, here in my home. And that’s all I really want.





The Funniest Symptom

18 04 2014

A hilarious thing just happened, loyal reader, that had my wife and I in stitches. I was feeling tired so I went to bed around 9:30. Erica wasn’t tired so she stayed up watching Netflix in the living room.

I was very relaxed but eventually felt a bit gassy and, not to get graphic or anything, I farted.

A moment later my concerned wife rushed to the room:

- Are you ok honey??

- Yeah, why?

- I thought I heard you groan in pain.

- Oh. Uh, no, that was a fart.

We both laughed at that for a good five minutes.





An Incredible Gesture of Forgiveness and Understanding

14 04 2014

I just read an all-too-rare local story, loyal reader, of humanity in the midst of tragedy.

You can read about it here, but in a nutshell, a local man was hit by a car in the Goulds and sadly died of his injuries. The distraught driver was not drunk or speeding, and did the right thing by stopping and seeking help. All signs point to a terrible accident where neither was at fault.

It would be very understandable for the family of the deceased man to want the driver to pay a price for their loss. But instead the family reached out to him to reassure him that they have no ill will towards him and do not blame him.

What a great moral strength it takes to take that path! Those people could keep hatred from their heart and support a fellow man in spite of their grief. If only we all could be that wise and strong!





Go, Sis!

8 04 2014

I woke up to great news this morning, loyal reader: after sending in an application earlier this year, my sister got accepted into the Social Work program at her local CEGEP! As I mentioned before, Isabelle is always selflessly helping others, so she will be an excellent social worker.

Comgratulations, Isabelle! Your big brother couldn’t be prouder!





I’m Only a Man in a Silly Red Sheet

6 04 2014

Wow! It’s been well over two weeks since I posted anything, loyal reader. I figure I owe you a little update on how things are going.

To be honest, my health has been in decline over the last few weeks. Graft versus Host Disease has made my eyes very sensitive to light, to the point where I must wear sunglasses at all times unless I am in a dark room. I took my wife to see the new Muppets movie last week and found out that watching movies in the theatre now feels like staring into the sun for two hours. On the upside, the disease is fighting the leukemia, keeping its progress slow and of course buying me more time.

Other than my eyes, my general body and mental health have also suffered quite a bit. My appetite is now minimal and it’s a daily battle to choose meals that do not make me queasy. Most warm, savoury meals trigger a dry heave from me so I have taken to drinking Boost or other breakfast shakes instead of lunch every other day. Thankfully there are still meals I can stomach such as salad, some seafood and some types of soups. With my sensitive teeth, hard or crunchy things are also out.

Going hand in hand with the loss of appetite is my chronic fatigue. I usually end up in bed between 9 and 10 PM and get up between 11 AM and noon, if not occasionally later. During the day, I lack the energy to get much done. Even watching shows I should be catching up on now kind of feels like a chore. I believe the time will soon come where I’ll spend almost all of my time in bed.

Worst of all is the mental and emotional toll. Up until last month, I have been breezing through this illness. But I had it easy. I had the energy to get things done. I had enough strength to set everything up ahead of my demise so my loved ones would be taken care of. I had the fortitude to help my friends and do fun things together. I could enjoy dinner dates at home and out with my wife. Food, reading, driving and going to the movies were my favourite things in life.

It’s very tough to accept that those days are gone. I always felt pride at being able to get things done, even more so when it came to do things for others. I feel it’s our duty to help each other when we can. Now I’m barely doing things for myself. A big part of my daily mental battle is dealing with losing that sense of identity. I’m not the man I was before, and I won’t ever be again.

Compounding this is the image others have of me. Ever since I learned I was dying, people always tell me I’m strong, positive, brave and an inspiration. With my current condition, those are even harder to measure up to. I’m no hero, believe me, but I can’t deny it was flattering and encouraging to be spoken of that way. Now that I’ve gotten it tougher, I feel very much like a fraud. On top of losing my own identity, it’s tough to know others also see my weakness. It makes me ashamed of appreciating their earlier praises and now failing to live up to it when the going actually gets tough.

Those are the thoughts that have been haunting me for a few weeks. Last week it became unbearable and one evening that Five for Fighting song “Superman” came into my head. You know the one that goes, “It’s not easy to be me”, implied to be sung in the first person by Superman. In it the Man of Steel laments that people can’t see his emotional weaknesses through his outer strength. I couldn’t help but break down in tears, a moment that was a long time coming.

For a while Erica held me in bed while I cried and told her all about how I’ve been feeling. It helped so much and reminded me that she’s my rock and my best friend. I tried to be strong for her but I realized I’m stronger with her, by sharing what’s in my heart.

After that night things have been better mentally if not physically. I’m coming to terms with this different life. With Erica’s help I’m finding ways to adapt to my condition. Soon the snow will melt and instead of going out far we will be able to go for little walks from time to time. If I can’t enjoy movies in a theater, then we can find some sort of digital downloads to rent. If I can’t read much, I should look into audiobooks. I could also find new hobbies more suited to my condition like music or cooking or something.

In a nutshell, I can either keep feeling sorry for myself and sink further into depression or I can roll with the punches and do the best I can with whatever I got left in the tank. I’m definitely going to try the latter. It’s not giving up, it’s accepting that once the flavour’s gone completely out of your chewing gum, you need to move on to a different piece.;





Good Idea, Bad Idea

22 03 2014

Here are two contrasting things I recently discovered, loyal reader. One is a great idea and the other, not so much.

On the good side, I recently had to wrap a gift for a friend’s birthday. It’s a task I am woefully bad at. But when I unrolled the gift-wrapping paper I bought, I found this out:

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Yes, the reverse side of the wrapping had guideline to make cutting straight easier, and measuring less of a guessing game. Brilliant!

Now on the less-great idea. I was browsing a table of books at the mall and came across this literary oddity:

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This is a book of handy conversation starters that are hundreds of variations on the titular query: Coke or Pepsi. It’s cover to cover questions to ask strangers and they are all about whether your chattee prefers one thing over another. Boxers or briefs? Elvis or the Beatles? Buried alive or burned alive?

I can’t help but wonder who would buy this? Are there people so lacking in imagination that they need a book to construct a basic “A or B” query? And are there enough of them that a publisher considers the venture profitable? The mind truly boggles…
;





My Sister is Wonder Woman

17 03 2014

Today is a very special day, loyal reader, and no, it’s not because of St. Patrick. Today my sister Isabelle turns 34 years old and I couldn’t be prouder. For you see, I love my sister but more than that, she is my hero and someone I wish I was more like.

Isabelle is one of the strongest and bravest women I know. She juggles so much with raising her family, going back to school, having run her own equestrian business for years and getting involved with charitable causes. She is also environmentally and socially conscious in her actions, she even makes almost everything she and her family eat from scratch, including peanut butter.

Juggling all these things like a Wonder Woman is only one of the reasons I admire her so much. The other reason is her unconditional love and empathy foe people. When someone is having a bad time and needs help, my sister will do everything for them. When I needed a bone marrow transplant, she put her entire life (two kids and a third step-child, back then a whole small business too) on hold to fly to Halifax to save my life. Last year she organized an entire bowl-a-thon to raise money for Erica and I just so we could fulfill some dreams like a grown-up Make-A-Wish Foundation. That all goes beyond family support and enters the realm of superheroics!

And that’s just what she did for me. She has tons of friends whom she gives aid and comfort to all the time. My sister Isabelle is the kind of woman who truly makes the world a better place.

So happy birthday to you, Isabelle! I love you and I want you to know you’re my favourite superheroine!!








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