Gratitude cont'd

If you've been following my posts for awhile, you'll know that it was my intention to remain anonymous for a number of reasons. I'd like to continue to protect the privacy of my family, and I'd rather my clients didn't know about my illness unless necessary so I don't mention the name of my company.


However, there are two details that I'm ready to share for an important reason, which I'll explain in a moment.


1) I live just outside of Toronto, Canada. You might have already figured that out from a few photographs, or my recent reference to our hometown baseball team. I'm being treated by the Toronto University Health Network, a group of hospitals affiliated with the University of Toronto medical school.


2) I've been diagnosed with a rare illness called Erdheim Chester Disease. There's lots of (mostly scary) info on ECD on the internet, but if you're interested in learning more from a reliable source let me direct you to http://www.erdheim-chester.org/ . This organization has been immensely helpful in providing our family with information and support. ECD is the type of illness that could easily fall through the cracks, or be misdiagnosed without the keen diagnostic skills that are resident at top hospitals.


The reason I've chosen to share this information today is gratitude. My lead doctor whom I've mentioned frequently on this blog is being honoured for his exceptional contributions to the medical community, particularly as an educator. He, together with another of my doctors established The Centre for Excellence in Learning and Practice (CEEP) at Toronto Western Hospital, this is the team that takes such great care of me.

As part of the celebration later this month honouring Dr. H, donations are being accepted to fund important projects for his team (Harvey needs skin! See the link below, and my post of Sept. 3rd) . I'm usually uncomfortable soliciting donations, but many of you have asked what you can do to help and unless I mention this, you won't know about it!


Visit http://www.learningfromthemaster.ca/ if you'd like further details. Donations can me made on line here.


Things could have gone so very differently for me after finding the bone tumour almost a year ago. Trust your instincts, and be your own advocate. We all deserve the best medical care that our country has to offer, and I'm grateful to be a recipient.

Gratitude

Despite my health issues, I consider myself a lucky woman and I do hope that comes across as you read my posts (failing the occasional rant like the one I let loose last week!) :-(

Yesterday afternoon I was feeling good. So good that I was out photographing, taking a long walk at one of my favourite parks. So good, that I was driving my daughter and her "young man" back and forth from the train station so that they could take in a ball game downtown (yeah Jays, thanks for the win - the kids were delighted with the turnaround late in the game!) So good that I tackled an ambitious menu for dinner (mmmm, didn't know that I would enjoy king oyster mushrooms so much, we're into trying some new foods these days!)

The train home from the game was running late by about a half hour, although I didn't find that out until I got to the station to pick up the kids. Having forgotten to bring my iPod (I'm loving my new toy!) , I grabbed a piece of scrap paper and a pen and started to scribble out some of the things for which I'm grateful. Here we go!

Although I've had to cut back considerably, I'm still able to get out with my camera. A client told me the other day that she can tell from my images that my work feeds my soul. I can't think of a greater compliment. She's absolutely right, and I'm blessed to be able to do work that I love so much.

I appreciate when I'm feeling good (or at least better than the day before). Those days are certainly not taken for granted.

Prednisone may have puffed up my face - but all my wrinkles disappeared! :-)

I never have to go to a job interview again.

Not much upsets me these days. Not train delays, not broken dishes, not a chipped tub (I was so proud for not being angry with myself when I took out a large chunk of enamel a few months back - it was my first "standing" shower in almost four months after my surgery and I dropped the shower head. Oh well!)

Thank goodness I was blessed with a very thick head of hair! My drug treatments cause a disturbing amount of hair to fall out when I shampoo, but so far it's not been noticeable to anyone but me. Now, don't be looking for the thin spots!

I get lots of hugs. Family, friends, acquaintances and even the odd stranger who learns of my diagnosis show their support with a squeeze, and I love getting them!

Spending lots of time at home. I'm a homebody through and through, my frequent visits at the hospital make me appreciate our home so much more.

We try to eat healthy meals (my addiction to chocolate notwithstanding). I envision every stalk of broccoli I eat helping to strengthen me. I'm grateful that we can put healthy food in our cupboards and fridge, and that most days I feel well enough to cook for my family. My second home is Longo's (local grocery chain), I love their produce and fish departments, thank you "fish guy" for introducing me to red snapper last week!

My car. It's a '97, but keeps going and going. I figure as long as I don't curse it when it occasionally misbehaves it'll keep chugging along. I hope I didn't jinx it by writing that down!

This list could easily reach into the hundreds of things that I'm grateful for. This is just what came to me as I sat in my car, enjoying the warm sun on my face, listening to a favourite radio station - waiting to see the daughter I adore, taking us both home to the man who means the world to me. Life is good.

Everything is different now, I am different now.

I'm editing an entry that I wrote (but didn't post) a few days ago, I'm glad that I waited. It's said that when one is writing when upset, it's best to put it aside and re-read before sending. A very wise piece of advice!

My original post came as a result of comments directed at me in the previous days from family members and others (I'll clarify that they did not come from my immediate household, they ask nothing of me except to tell them what they can do to help me. I'm one lucky woman!) I'm learning that people close to me will deal with my illness in their own way, sometimes in a way that I find very hard to comprehend.

Don't get me wrong, I'm very grateful for all the care and concern that flows my way on a daily basis. I value your supportive messages, both posted here on the blog and sent to me privately. As for those close to me - sometimes we may disagree, sometimes we both may say things that the other doesn't want to hear. But my life is not the same anymore. I'm making up new rules along the way that help me deal with what tomorrow brings, and I hope that sharing them brings some insight as to why I may react the way I do.

My New Rules:

I get to say "no" (something I've always had a hard time doing), and I don't need to explain myself. If you know me at all, you know that I want to do everything I could before I became ill, but I just can't. Sometimes I'll have to cancel plans, please don't make me feel bad for doing so. I'm already very unhappy about it.


I want to hear how you and your family are doing, but don't be upset if I don't reply to emails & phonecalls as quickly as I used to. Sometimes I don't want you to hear in my words & voice that I'm having a rough day.


I appreciate all very kind offers of help, and I need to learn to accept that help without feeling like I've failed because I couldn't do it myself. But I will still try to tackle it myself first!


Please don't tell me that you know that the diagnosis is a mistake and that I should see your doctor. This is not a mistake (I've done my fair share of praying that it was). I've got a large contingent of exceptional doctors who are working very hard to keep me here (and comfortable and pain-free) for as long as possible. And from my perspective, I'm glad that I know, it's far better than feeling unwell and not knowing why.


Although I've been quite self-conscious some days about the physical changes that prednisone has caused, I'm trying to be more comfortable with seeing friends and family. When you do see me please don't tell me how ill I look, I'm well aware of it. Take notice instead that I'm smiling and laughing. We're still doing a lot of that!


I'm very susceptible to infection as I undergo immuno-supressant therapy. Please don't visit if you're sick, you might get over your cold in a week but I'll likely be down much longer. "Just the sniffles" is too much of a risk right now, and not what I want to deal with on top of the drug side effects.


I've done enough speculating about what might have caused this disease, and I'm done. Even if it was an environmental influence over which I might have had some control, I can't do anything about it now (and experts have no idea what caused this, so it's a moot point). Asking me if I ate my veggies as a child (and yes, I did) makes me feel like you want to blame me for my illness. I'm not going there.


It's okay with me if you ask about my illness. But let's talk about lots of other things too! :-)


My doctors explain my options, and I decide which treatments & drugs I want to go try. They completely support my decisions allowing me weigh the quality of my life against treatment side effects, and I ask that you support my decisions as well.

My daughter and husband are my top priorities. Period. They will get "first dibs" on whatever energies I have, I trust that you would make the same decision if you were in my shoes.

Because I'm sick, I get to.....

Buy myself a new lens for my camera.

I'm having a "damn it, I'm sick" day. Of course I know that everyday, but occasionally it hits me upside the head something fierce. Today, it was a good two hours after waking up, taking my first round of pills, looking at my moonface in the mirror as I brushed my teeth, checking out the bruises on my foot from my fall the other day (still ticked off with myself about that!).

What set me off this morning was looking at some photos on another photographer's blog, absolutely lovely portraits of two young sisters. The photographer had written about how lovely these young ladies were, and how beautiful they would be when they grew up. Hmmm. My daughter is a lovely young thing (albeit at sixteen more a young woman). What is she going to look like when she's my age? Boom - there it was. Unlikely that I'll be around to see for myself. Self pity ensued.

Around the same time this morning I received an email from a favourite camera store about a lens that's on my wish list going on sale. Since my diagnosis my husband has been after me to fulfill any desires on my wishlist - and there are several lenses on that list.

On one hand it seems pretty clear that this is a case of retail therapy. Feel bad, buy something. Not my usual modus operandi (I'm really not a shopper, the last place I want to be is a mall), but on the other hand - a new lens is an investment in my photography business, isn't it? That's positive thinking - soon I'll be working much more than I am now!

Negative self pity and optimism about my capabilities to work in the future have cancelled each other out. New lens wins, now I just have to wait patiently for my local camera store owner to let me know if he has the lens I want in stock!

But I was being careful!

Last February I had a bone biopsy done on my right femur just above the knee. Three months of bedrest & crutches to allow the bone to heal a bit. However, a good portion of the tumour is still there, and I've had my heavy handed warning from my surgeon - take it easy on that leg! No jumping, running, twisting - the bone is still unstable and a fracture could happen if I'm not careful.

The plan is to stabilize the bone later on with another surgery, and in my quest to keep working through my busy season of September - December I'm hoping to hold off at least until the new year (this surgery will keep me off my feet for about five months, I have to get mentally prepared for this!)

I've done a pretty good job of doing as the doctor said. I caught myself running the other day during a photo session (a two year old moves so darned fast!) and cursed under my breath - why can't I remember something so simple?

Last night I wanted to take some laundry detergent to the basement. Two small jugs with handles, and being cautious I held both in one hand so that I could hold the railing with the other. No idea what happened next, but I in the next moment found myself in a heap at the bottom of the stairs (only three steps, it could have been worse with all the stairs in our house!) I yelped in pain, both my husband and daughter came running. S. got an icepack, husband sat with me until I could test out my ankle. A bruise quickly appeared on the side of my foot (have steroids to thank for that, look at me the wrong way these days and I'm black and blue!)

As the evening progressed, it wasn't so much my ankle that hurt but the area where the tumour sits was throbbing. Had I jarred my leg enough with the fall to do some damage? I would have kicked myself, but that's off limits too...

Both ankle and surgery site are better this morning, but I some days I detest living like this. Treating my body as if it were made of china. Wondering what each day will bring. Trying to live a normal life that most days is pretty far removed from normal. I want to be better, but know that I have to appreciate today because we have no idea whether tomorrow, next week or next year will be any better than right now.

Peek a Boo, I see you!

Just one glance in the mirror this morning as I brushed my teeth. Yes, I'm sure I saw it. A familiar shadow of cheekbone. After months of looking like I'm collecting acorns for the winter from the steroids I've been taking, I actually had a moment of recognition for my old self.

Even though it has been months, every glance in the mirror (and I kept those to a minimum of late) had me searching for something more familiar. Not that the change has been that drastic (you'd likely still recognize me), it has been unsettling. The expansion of my cheeks makes my eyes look so much smaller, and the sparkle in my eyes disappeared. A touch of makeup to disguise the dark circles helps me to feel a little bit better about how I look if I'm going out into the world but I can't help feeling like I'm adorning someone else's face in the mirror. Hmmm, I note that this is all about the eyes, not unexpected for a photographer of people! :-)

And the belly! By early evening my stomach was getting so large that I'd easily pass for six months pregnant. But the last few days, maybe five - even four? Very slowly, some of the physical changes that the prednisone brought on are lessening.

Tapering off the prednisone hasn't been easy. Every drop is followed by a few days of unrelenting fatigue, aches and dizziness. After that however, I enjoy a few days of relative well-being until the next dosage drop. I'm down to 16 mg/day from 40 - that has to make a difference, don't you think?

I'll still be tapering slowly into the new year, but this morning's moment gives me hope that soon I won't look so ill anymore. I may be dealing with disease, but I don't want to look it. I don't want the pity of strangers, I don't want anyone assuming that I'm not capable of whatever I set out to do. I want my body to reflect that I'm trying to do all the right things by eating healthfully, sleeping well, respecting what my body is going through.

If I share the details of my illness with someone, I'll be absolutely delighted if they reply "how can this be, you look so well!" And I'll know that I'm doing the best I can to fight this, physically and emotionally. That's my new job, and I intend to be a stellar performer on this front.

A Family Affair

At last week's appointment, we (my husband was there too, as always) had a frank discussion with my doctor about other stressors in my life besides my illness. Family issues unrelated to my health have been weighing heavily on me, and certainly aren't helping the situation. My doctor asked me if the usual trials of having a 16 yr. old daughter added additional stress, and I was proud to say that S. has been the easiest child to raise. She and my husband can lift my spirits like no one else can just by being in the same room.

Dealing with a serious illness is often said to be something that the whole family suffers, not just the patient. I believe it, and try to respect that at every turn. I realize that this is just as hard on my husband and daughter as it is on me, and felt that it was high time that my doctor and daughter met. There was one other reason to make this happen, as it turns out my lead doctor and my daughter's grandfather on her dad's side grew up together in another country. Grandpa sadly passed away this spring, making this meeting yesterday more meaningful. I could see in Dr. H's eyes how pleased he was to meet the granddaughter of his dear friend.

Dr. H. has lots of questions for S. about school, future plans etc. Her grandmother had asked for a photo of the two of them together, which Dr. H. graciously agreed to - and why didn't we include Harvey? Harvey, as I should explain is a $100K teaching cardiac dummy donated to my medical team by a former patient which replicates various cardiac conditions. Dr. H. cranked up Harvey for S., letting her listen to what a normal heart should sound like, and what my heart sounds like (ooh mom, that's weird!) S. was blown away, all she kept saying is "that's so cool!" to which Dr. H. replied that it was indeed cool, and that it might have been the first time he'd used that particular phrase ... :-)

It was an important day for me. My interaction with my medical team has become very personal, I know that they care deeply about my wellbeing and are doing everything that they can to make me more comfortable. Having my daughter finally meet Dr. H. felt right, I know he wants my daughter's mother to be around as long as possible.

As scary as hospitals can be, I'm in a safe place on the 8th floor in the "rare disease" clinic. I wanted my daughter to see for herself that I'm in very capable hands (and she tells me that this visit did indeed help her a lot with dealing with "our" illness).