What Next?

A few weeks ago I wrote about my hopes to be able to photograph a very special event this past weekend. The family booked me eighteen months ago, at that time I had no idea of the challenges that lay ahead.

I shared the details of my health situation with my client a few months ago, and insisted that they permit me to book another photographer given that my health was increasingly inconsistent. They'd hear nothing of it, and said that they were confident that I would be feeling great. I did book another photographer on retainer; the thought of letting them down was too uncomfortable.

We worked with my doctor to adjust my meds to give me the best chance of being able to fulfill my commitment, and I'm very happy to report that it worked! I felt in top form last Saturday, and for almost nine hours/3000 shots later - I documented a very special day in this special family's life. I'm truly grateful!

However, I was somewhat surprised to feel quite down the next day. For almost a year I've been focused on being okay for December 12th, discussing it frequently with my doctor (who fully supported the med adjustments), had friends and family rooting for me. But now it was over, and I'm feeling a bit lost. What do I work towards now?

There are the milestones such as my daughter's graduation from high school, our five year wedding anniversary and more- but I need something else that focuses on a personal accomplishment. Not too far off, but further away than the next few months (the rest of my prednisone taper has to happen first. From my experience of the last few months I know that this could be a rough ride, I've been so happy to stop the taper for a few weeks to feel somewhat normal for a bit).

It definitely won't be photographing an event - I can't go through that stress again of praying to be well enough for a date that can't be rescheduled if I'm ill.

This is going to take some thought. I'm thinking, and I'll let you know what I come up with.

Strange Dreams Indeed...

I'm famous for my dreams - outright wacky most of the time! A few nights ago I was watching an episode of "Nova" which addressed some theories as to why we dream, and it made me think about how my dreams have unfolded and changed over the last year. I could see a connection as to how we at night subconsciously address issues that we're grappling with during our waking hours.

One pattern particularly intrigued me and I'm not sure how it fits in - feel free to jump in with your own theory!

When I was first diagnosed with the tumour in my leg, I dreamed often about my leg falling off. Not at all unexpected (and rather unoriginal, don't you think?)

However when I was diagnosed with Erdheim Chester Disease in February every dream (that I remember having) was one that I'd had before in my life. Months of re-runs! Even repeating dreams that I'd had in my childhood and don't believe that I'd thought of since. It was a journey into my past every single night, some pleasant recollections and a few nightmares too. Weird, eh?

Then I started on prednisone (steroids) and I don't think that I had a single dream for almost three months. Steroids can make you pretty hyper and sleepless, I was lucky to get three or four hours a night. It's possible that I didn't even reach the REM dream stage during those very short and restless nights.

Now that my dosage of steroids is considerably lower I'm sleeping normally again on most nights and my dreams have returned. But not one re-run in the bunch! They're all new, all weird and wacky - back to my usual state of nocturnal wanderings of the mind. Most nights I can make a connection to my illness; I try so hard to put it out of my mind during the day but it manages to bite me at night.

But I can't help thinking about that "re-run" stage and wonder what the significance might be. Any amateur dream analysts out there?

Trying to crawl back

I haven't posted here in awhile. I wish I could say it's because I've been feeling great, "out and about" (my Canadian is showing!) and living my life.

It's been tough, and when things get tough I get quiet. When I was in the throes of labour delivering my daughter sixteen years ago, not a peep out of me. Other women delivering that night could be hear yelling & screaming (not to mention cursing!) down the hallway but I wasn't making a sound. Of course it hurt like nothing yet had in my life, nor since - but the most I could muster was a quick "yup" and "nope" was asked questions by the nurses and doctors. Just the way I operate, like a wounded animal I just want to crawl away when I'm in pain or ill.

The prednisone taper hasn't been going well, I ended up jumping back up on my dosage after a disastrous week. I shouldn't, but I consider it a personal failure when I can't cope with the side effects of this drug. It's become a battle of me against the steroids and I'm determined to win (defined by successfully tapering off this stuff).

I'll keep at this, but I've decided not to taper again for another three or four weeks. I was booked over eighteen months ago to photograph a milestone event for a very dear client in mid December, and I won't let my illness get in the way. Mind you, I'm not ignorant to the fact that ECD has a mind of its own and I've retained a back-up photographer just in case illness wins on that day. But I've been praying every day that I'll be given a twenty-four hour respite to the worst of the symptoms so that I can capture on film the abounding love that this family shares.

Please keep your fingers crossed for me, I need so badly to do this. I'm so very tired of letting family and friends down this last year when I can't follow through with plans because I'm not doing well. It will be the last family event that I photograph, this is tough to accept. Going forward I will only be booking work if the client understands that I may need to reschedule and unfortunately that doesn't work with sessions that must take place on a particular date.

On the hospital front - my doctor was featured in an article in the Globe & Mail this past weekend. I'm one lucky gal to be his patient. And he understands and supports my desire to shoot this last "biggie". Together (with my family) we pick my battles.

Doing Laundry - My Big Accomplishment

A few weeks back I had a great week. I was able to photograph several families, and got quite a bit of personal shooting in too - during the best week for fall colours no less!

Then I crashed. Hate, hate, hate prednisone. Did I say how much I hate it? I'm in that phase where my adrenal glands are supposed to kick in and work on their own again to deliver cortisol as required, but they don't seem to want to do that. I'm not a lazy person, but apparently my adrenal system doesn't know that.

I've been grounded. Even taking a shower seems like a monumental task on most days, and my proudest moment has been mustering enough energy to do a few loads of laundry. Although the steroids didn't seem to affect my moods negatively in the first few months, I feel overwhelmed by sadness on some days. This is so very hard on my family and I feel terrible for putting them through all this. This isn't me, and I'm wondering where I've gone.

I debate this morning whether to call my doctor. I'm pretty sure that he'd tell me to up my dosage and try tapering again in another week or so - but, I'm really determined to get off this poison as soon as possible and want to try sticking it out for a few more days.

So, forgive me if I'm being a bit cranky and not replying to emails quickly. I'm feeling sorry for myself and finding it difficult to be happy about anything right now. I'm going to blame the steroids because despite everything we're going through I know there's a happy person underneath all this - I'm just waiting somewhat impatiently for her to emerge again.

Nose to Nose

After dropping my daughter and her friend off at school this morning, I took off on one of my photo field trips. Often without a destination in mind, I drive until I see a turnoff that looks appealing and keep making turns until I decide that it's time to head towards home again. Thank goodness I have a great sense of direction! A few years back I went on one of my field trips and ended up almost six hours away from home - but these days I stay much closer when I do get out with my camera.

The light was soft and gorgeous, wrapping around whatever subjects I stopped to photograph. After shooting for several hours I started to drive towards home when I passed a farm with numerous horses in the paddock. I've passed this farm dozens of times, but this time the light was right and I had to stop.

Often when I approach horses with my camera they glance towards me indifferently, but this group seemed to be very interested what I was up to. All trotted up to the fence, sniffed at my outstretched a hand and decided I was worthy of giving them a rub on their snouts (do horses have snouts, noses? Not sure of the correct name!)

They may have enjoyed having a bit of a "snout massage" but I think I got more out of it than they did. Interacting with these beautiful creatures relaxed me like nothing else has for awhile. It became a bit of a game as I tried to capture some images, as soon as I'd get focused on one horse, another would run into the field of vision - ruining the shot - but I found myself laughing away and moving to a new spot. Only to have the same thing happen again. They seemed to enjoy my presence - and it made me feel like I was wanted there.

I did manage to get a few decent shots, but what I took with me back to the car was such a fantastic sense of well-being that continues to warm my heart hours later.

Consumed or Oblivious

I had another good day today physically which allowed me to go on a drive searching for photo opportunities. The fall colours are coming in nicely, the roads are quiet during the week which makes pulling over to the side to take photos much easier.

These drives usually provide me with an opportunity to forget about my health issues for a few hours, or rarely - as it was today - take my brain to places I don't like to visit. Not five minutes before finding this gaggle of geese, I came across at least half a dozen turkey vultures attacking what was left of a raccoon on the side of the road. My mind was going to all the wrong places today from the get-go, and seeing the vultures ravage the carcass caused me to think about how my illness lays little mercy upon me these days.

Then the geese. I've passed this farm many times and often hear the geese honking but this was the first time that they'd put themselves in view. I thought about how much I'd like to fly away and leave my illness behind, if even just for a day for a most welcome respite. But it's impossible to escape. Taking meds four times a day sets the tone. Have to eat with this pill, don't eat with that one - don't even think of drinking any alcohol while on the other...

I think what set me off today was forgetting my morning pills, the most important ones not to forget. I was an hour late - I had actually forgotten for several hours after waking today that I was ill and I was simultaneously delighted at having put it out of my mind and at the same time scared. My pharmacist had been so specific about not getting off track with my morning doses. No harm done, it was only an hour off schedule - but what if I'd gone on my long drive today without having remembered? What if I'd had a reaction when I was on one of those lonely country roads?

It's sometimes just all too much, too complicated, and it at times leaves me resentful. But not so resentful that I'd subject you to a photo of the turkey vultures at their feast. The rear ends of geese are better, don't you think?

Where I'll be this week....

This laneway is one of my favourite spots to photograph. I've visited it dozens of times since moving to Burlington, in every season, in every type of weather. This image was captured yesterday, a cool autumn day that reddened my cheeks and made me pull my zipper up tight around my neck.

Never does it fail to inspire me, however I must say that fall is my favourite time to photograph here. The leaves have started to turn colour, and some are already dropping. From past years I know that the leaves will be a brilliant orange & yellow within the week.

My prednisone taper continues to give me plenty of rough days, and on these days I don't drive - much less photograph. But for this laneway, I will adjust my med schedule so I don't miss the peak brilliance to come. I know that my doctor approves. He's encouraging me to make the most of my time; telling me to do what I love. And this I love.

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).

Food, Glorious Food!

I'm grateful for lots of things in my life.

Today I'm especially grateful that my illness generally doesn't affect my appetite - I LOVE good food! Yes, meds over the last few months have taken a toll on my stomach, but when I'm able to eliminate or reduce dosages on some of my meds I'm so happy to be able to eat normally again. Update - the methotrexate is out of the picture, I was spending three or four days each week feeling very ill - unable to eat - and have decided that it's not an experiment I wish to continue.

This weekend my niece is visiting and for dinner I made Penne a la Vodka (actually farfalle, I rarely follow recipes exactly). Double bonus - not only have I had more energy the last few days and felt up to cooking a meal, I also was able to enjoy the results with my family. My heart and stomach are both full!

I'll take my achy bones and other pain any day over tummy troubles. It's one wish I often make when thinking about my future - please let me continue to enjoy my meals!

Another Year

It's my birthday today. Time to change my age on the header of the blog - yup, 45 years young. Most days I can't believe that I've spent so much time in this body (and other days I'm feeling so much older - these drugs that I'm on have a way of making my body feel ancient!)

As people often do around their birthdays I like to evaluate where I am in my life. Am I where I wanted to be at this age? Have I accomplished what I'd set out to do? When I worked in the corporate sector we regularly evaluated our short and long term objectives, and it was a good time to review my personal goals as well.

Short and long term planning has taken on a whole new meaning for our family in the last year. Really, there is no plan anymore. Appreciate the good days, try to get through the rough ones with grace and good humour.

I woke up this morning feeling very grateful. The two people who mean more to me than I could ever tell you wished me happy birthday with big hugs. They're with me through the best and worst (and we know that this could be just the tip of the iceberg) of this illness, celebrating when I feel great and always at my side when I think that I just can't do it alone. And I don't have to. I'm so very blessed.

We spend lots of time at the hospital and often notice how many patients don't have anyone with them. Some have difficulty with mobility, others are obviously distressed and some just look lonely.

Having had a major health crisis many years ago when I was on my own, I think I can fully appreciate how much it can mean to have someone by your side when ill. I know it means everything to me now to be able to lean on my husband and daughter for support (and best of all to share when I'm feeling pretty good!)

Not that everyone wants to share details of their illness, but if you happen to have a friend who is not well and dealing with hospital visits, uncomfortable tests or treatments - please ask if you can accompany them sometime. I'd bet that in most cases, the patient has just felt too uncomfortable asking for a shoulder to lean on. It can make a bigger difference in their day than you might ever imagine.

The Crows Must Know a Little Something About Storms

It's a been a summer with lots of rain, and recently lots of thunderstorms. Love thunderstorms, I can sit and watch them for hours.

There's a big storm skirting us just to the north with ominous, churning dark clouds. It doesn't sound like we'll get the brunt of it, but I'm enjoying the skies and hearing the wind blow (my apologies to one faithful reader of this blog who doesn't care for storms in the least, I'm glad it's far away from you D.!)

I've mentioned the apple orchard behind our house in a previous post and how much I like looking out my bedroom window at the changing trees. As I was checking out the clouds, I noticed five large crows huddled together on the branch of a dead apple tree. They're close enough that I can see their tail feathers bristling in the wind, they look cold (even though it's very hot and humid right now).

Why situate themselves out in the open on a dead branch taking the full force of the wind? There's shelter in the forest a mere 10 second or so flight away, I would think that the crows would be much better off there.

Maybe they know something that I don't about facing a storm full on.

During the time it took me to write this post the storm has turned and hit us afterall. It looks like those video clips of hurricanes in the tropics. The rain seems to be coming at us horizontally, yet those crows still sit out there (although I can hardly see them in the driving rain).

I think I'd still rather be in the forest, sometimes it feels good to hide away from whatever onslaught is coming my way. Just to get out of the driving rain for a short while. Think about it crows.

Apple Trees and the Big Apple

Thank you to all who took time to comment on my last post (both here on the blog and private messages) about postponing our trip to New York, I appreciate your kind wishes. With my medication schedule our trip won't be an option sometime next year at the earliest, I hear that spring in NYC is lovely and maybe we'll aim to be there when the cherry trees are in bloom! I do love cherry trees and get out each spring to our local botanical garden to photograph them; there's a softness to the flurry of light pink petals that captivates me.

It's been a difficult week. I started methotrexate and it's no picnic. On my second round, it knocks me out for about four days with nausea & weakness. I don't want to take this drug anymore, and will call my doctor tomorrow. I have to recognize that this illness has no standard treatment and we're experimenting right now. It's okay for me to say I don't want to partake in this particular experiment anymore, right? I feel I have so many things to do and can't afford to lose the better part of a week to feeling this bad, when the "T-Trex" (as my husband calls this drug for all the nastiness it attacks me with) is meant to speed up my weaning off the prednisone. I'd rather take the longer wean with all the prednisone side effects than go through this.

When I'm feeling poorly I often look out our back window to enjoy the small apple orchard that lies just beyond our yard. There's one large apple tree that's particularly close to our fence, and I've enjoyed watching it going through its seasonal changes. The stark winter branches give way to fragrant spring blossoms. Then the leaves become thick and lush and then at this point of the summer I start to see little red apples appearing amongst the greenery.

This year is different. Part of the apple tree has died. A good third of the tree didn't produce any leaves this year. It's stark and barren compared to the rest of the tree (which I'm happy to see looks as healthy as ever). Although the owner of this orchard doesn't harvest the apples in the fall (they all fall to the ground, making for some very happy neighbourhood squirrels!) she does do a nice job of pruning all the trees.

Why has she left this dead growth? Has she not noticed it yet, or is it not the right time of year to cut down the dead limbs? Maybe she hopes that our tree (after four years of carefully noting all its transitions I feel a sense of sympatico with "my" tree) will come back next year, that somehow the restorative potential of a winter's rest is just what is needed. The tree and I. Maybe we both just need rest; unfettered by poking, prodding, cutting and medicating for awhile.

I'd like to add some good news, sick as I'm feeling this week I wanted to keep my appointment with my orthopaedic surgeon yesterday. The bone tumour in my leg hasn't grown since my last x-rays three months ago. The next step is up to me, if I find the pain intolerable my surgeon will take out the tumour and do an allograft (cadaver bone, hmmm....probably better if I don't think about the source too much!) with rods/pins/screws (my goodness, the thought of more metal in me!) to keep me mobile. Thankfully I have a high pain tolerance, and I'd much rather take pain meds than have the surgery. I'm grateful to have options.

My "Bucket List" and New Friends

In the weeks following my diagnosis earlier this year with a disease that with great likelihood give me a shorter than average life expectancy, I sat down to make my "bucket list". What was it that I most wanted to do while I was still able to do so?

First on my list - a trip to New York City with my husband and daughter. I've been lucky to travel to many major cities around the world, but never to the one that has intrigued me the most. Not just any trip to NYC, but a photographer's jaunt to neighbourhoods that have filled my imagination with colours, sounds, tastes ever since I can remember.

So, we set about making our plans. My family urged me to dream big. Stay in a nice hotel in Manhattan. Ask friends about great restaurants. Make a list of every spot I wanted to hit in the space of the week we would spend there.

We planned to leave right after my daughter's 16th birthday near the end of this month (which happens to be the same weekend as mine, and we wanted to be home for both), and be back in time for school to start. What a great way it would be to end the summer!

Unfortunately, things haven't worked out as we'd hoped. If you've been reading the posts, I've been dealing with a cardiac issue - but it's the side effects of numerous drugs that have wiped me out and left me unable to travel. Some days I feel lucky to make it to the mailbox around the corner, not quite what I had in mind for my grand adventures this summer!

When I had started planning, I tripped upon a blog by a fellow photographer from Greensboro, North Carolina by the name of Aris Wells http://www.ariswells.com/. Aris and her family had recently visited New York City, and she had posted photographs from their trip. I excitedly forwarded the link to my husband, telling him that the photos so beautifully summed up what I wanted to get out of our own trip. Her images captured what I've come to envision as the beauty and life of this city.

Last week, as a family we made the final decision (or step of acceptance?) that our trip would have to wait. I decided to contact Aris to ask if it would be possible to share her photos in this post, and I'm delighted to say that not only did she quickly and graciously agree - she sent me emails that put tears in my eyes. I'm blessed to have so many friends who are supporting me on this journey, and I'm pleased to count Aris as a new friend. And I'll look forward to sharing my photos of NYC with her when I do get there!

Please enjoy these photos courtesy of Aris, and do pass along her name to any friends/family who might live down Greensboro way! Her work is gorgeous. And her blog shows the images bigger than you will see here (plus you can read her entertaining commentary on her own visit too) at http://ariswells.com/blog/?p=266.

Thank you Aris. Your photos of NYC put a huge smile on my face whenever I look at them (which is quite often!)

It had to be said

"It must be so frustrating that you've gone through four months of all these drugs, including six weeks of steroids that have wrecked up your system - all for nothing. The pericarditis is still there."

All for nothing. I feel like I've been run over by a bus most days (and look like it too), all for nothing. I've tried to remain optimistic throughout this process but when someone very close to me pointed out that we're no further ahead four months later (I don't think it's unfair to say that I'm even a few steps further back) it was like a final puzzle piece falling into place. It had to be said, and I hadn't been able to say it to myself yet.

Sure, I've gone through the weekly disappointment when my doc puts his stethoscope to my chest and again hears the squeaking and rubbing. Intellectually I understand that my treatments have been unsuccessful and in fact are in the long term potentially doing more harm than good. It's a series of gambles when dealing with a rare illness, there's just not enough information out there to be able to follow a proven regimen. All of us dealing with this illness have to make the best decision we can given what our doctors can tell us, what we've researched on our own and often listening to what our instinct tells us to do.

Hearing "all for nothing" has caused me to think even harder about upcoming treatment options. I mentioned in my last post that I'm supposed to start a chemo drug next week. I still don't know if I'll do it. My body feels beaten up and I feel that I need a rest from all these meds (and I'm stuck with the steroids for at least another few months as it has to be tapered safely). We're still trying to address one symptom of my illness (pericarditis) and haven't even yet begun to treat my illness as a whole.

Do I have the luxury of giving myself a rest? Am I weak if I say I need to raise the white flag for awhile? Friends and family who know me might say that this doesn't sound like me at all, they know a fighter who always can raise a smile. Right now I don't even recognize the person I see in the mirror after the effects of steroids, truth be told I don't recognize the person inside of me at times either right now. I so desperately need a shred of good news to help boost me along on this journey.

For now, I'm going to step into a long, hot shower. Cleans my body and my brain, and I'll be ready to face another day. And I will smile because despite "all for nothing" I still have much to be grateful for.

Stepping Over the Edge

Last week I was able to meet with a cardiologist who specializes in pericarditis. She's written on the subject for textbooks, medical journals etc., and from what I'm told she knows pericarditis better than anyone in this country, I'm lucky to have such expertise on my side.

However, it was a bitter pill to swallow (no pun intended , but prednisone does taste AWFUL!) when she told me that five weeks on steroids haven't worked, and not likely to do so if they haven't improved things by now. Saturday I started on what's called a prednisone taper, you have to go down very slowly to allow your adrenal glands to start producing the hormone cortisol on their own again. This process will take months, best estimate if all goes well it'll be November before I can stop taking them.

I was very surprised that even a small drop from 40mg to 35 mg affected me so greatly. It's been a rough few days. I tried a trip to the grocery store yesterday, and after only picking up half a dozen items I was ready to sit down in the middle of the aisle and beg some strapping young lad to carry me through checkout (I still needed those items!) and to my car. The tumour in my leg is throbbing, and the pericarditis is making sure I don't forget that it's there. I'm anxious that this might herald what the next few months might be like. I've heard that the taper can be worse than the steroid side effects, I'll just have to take this day by day.

This isn't the hardest part for me to digest. My team of doctors agree that it's time to treat my overall illness rather than the pericarditis on its own; out come the big guns. Next week I go back to the hospital to get my prescription for a chemotherapy drug called Methotrexate. I'm struggling with this a great deal. I get that a great many people have been treated successfully with chemo for cancers, but I had decided early on that I wouldn't put myself through chemo for an incurable illness. Methotrexate from what I've read isn't as hard on the system as many other chemo drugs, but still kills cells and can be unpleasant.

The reality is that in order for our government to fund the interferon (about 30K a year) that has seemed to benefit others with the same illness around the world, I have to try some more commonly used (and far less expensive) options before they'll consider my application.

I'm not entirely sure yet whether I'll agree to take this new drug. I have a lot of questions to ask at my next appointment, maybe my docs will convince me - maybe they won't.

I value that my team of doctors do their best to educate me on my options, but they've said all along that decisions remain with me. From the very first visit I was told that their mandate is to research options to slow down the progression of my illness, but above all make sure that I'm as comfortable as possible.

Just how comfortable do I want to be?

I apologize in advance...

Bad, nasty stuff happen to all of us. I figure I got a little more than my share in this lifetime; I've been thinking that there might be a bit of a bonus for me somewhere for putting on a brave face through all of this, not terribly unreasonable - right?


So I have it in my head that as a reward for dealing with all of this I miraculously have been bestowed with the great singing voice I've always wanted.


When I'm alone at home I've been belting out tunes, singing along with my eclectic collection of CDs with delusions that should a record producer get lost in my neighbourhood and overhear me as he/she knocks on my door for directions that I will surely land a multimillion dollar record deal. Hrrmmpphh. I did mention delusions, didn't I?

I'm afraid that I've now opened the door to causing others great discomfort. After a bit of a rough week I treated myself yesterday to my very first MP3 player (an iTouch in fact, I love it!) but I've realized that I have a hard time listening to it without singing along.

So should you come across a mid 40's woman who's making a complete fool of herself in public (you'll know it's me 'cause of the camera around my neck), not realizing that she's actually making sounds audible to others - forgive me! I'm really trying hard to keep the music inside my head. I am fully aware that I won't be mistaken for Norah Jones, but I do love this escape!

Did I mention that I love to dance too when I listen to music? There will be no mistaking who it is when you find me. Really, I'm sorry for subjecting you to this spectacle. :-)

After not working for almost five months (because of my leg surgery and subsequent recovery time) I was gnawing at the bit to get back to photographing. I didn't expect to be further delayed by that (yes, still very present) case of pericarditis that has required copious amounts of prescription drugs, the side effects of which have further delayed my return to a full work schedule.

I'm beyond pleased these days when I'm feeling well enough to shoot a portrait session, but the reality is that I have to take this very slowly. Thank goodness I have some very understanding clients! I had a fantastic session this past Sunday and felt on top of my game, and the photos came out really well. I pay for it by being quite tired for a few days afterwards. Totally worth it though for the few hours of bliss!

I'm hard on myself about this light work schedule. I love productive work days, they give me great satisfaction. When I was well I was always working on something photographic. Shooting, retouching, preparing images for the galleries that represent my work, self-publishing a book, and always learning. If I was on my computer, 95% of the time it had something to do with photography!

A few weeks ago a good friend to our family called to check in on how we were doing. At the time I was having a rough day, and this sage friend told me that he did understand how much I must miss working, but dealing with my illness was now my job.

At the time I agreed in theory, but it's taken a few weeks for this to sink in. I'm starting to understand that my job now is to take the best possible care of myself that I can; to consult with my doctors, research my illness, and follow through with my treatments. And given how driven I can be with whatever I set my mind to, my current objective is to be the best patient I can be - with the goal of achieving the best possible outcome for this illness. Hopefully photographing will be a bigger part of my life again soon, I miss it more than I can explain in words.

The first photo was taken after a hospital visit last week. I was so exhausted from my trip into the city, yet I felt I had to walk about with my camera for a bit and came across this artwork on the wall of a church under restoration. The second photo was taken in a downtown office building, the reflections are what caught my eye. Both images uplift me for different reasons, I'm trying very hard to keep looking up! :-)

A Question of Health

Somehow I've found myself as a frequent recipient of on-line survey requests. Reputable survey companies send me questionnaires, I fill them in and in turn I often get bonuses as a thank you for my time. Significant discount coupons towards products I already buy, or even cash bonuses once in awhile. Given the amount of time that I spent in bed earlier this year not a bad return for maybe 20 or 30 minutes of my time every week.

The surveys keep coming but I find that I'm completing fewer of them, I just have better things to do with my time now that I'm mobile again! One survey caught my attention a few days ago, the subject was Emergency Health Care. Interesting enough and I was happy to add my two cents hoping that my responses might end up in the hands of government agencies that might be in a situation to improve my country's emergency care (which I've unfortunately experienced first hand to be lacking in many respects).

These surveys usually end with a few questions about my personal demographics. Age, marital status etc., but this last survey also asked about my current state of health.

Excellent
Very Good
Good
Fair
Poor

I answered, and was already a bit further along in the survey before it hit me that I had answered "Good". If you've been reading this blog, you'll know that "Good" isn't exactly how one would describe my state of health!

I love it when I have forgotten what I'm dealing with. Blessedly it happens often, but I had to laugh at how I answered that particular survey question. I'm grateful for the mental holidays I'm able to take from my illness, short or long - I'll take 'em.

To those kind friends who email us with messages of support and requests for updates - my hospital visit on Monday confirmed what I suspected, the pericarditis is still going strong. Higher doses of the same meds this week, I seem to be tolerating them fairly well though (except for the steroid "moonface", I'm afraid my vanity is kicking in a bit and I'm not crazy about going out in public these days). But... I finally had a decent night of sleep (thanks to a little white pill that my doctor insisted I take so I'd get more than 3 hours sleep - it was bliss!)

Conquering Fear

When I speak with good friends about the prognosis of my illness, I'm always quick to point out that I'm not afraid to die. Hoping of course that this outcome is a long way off, but the truth of the matter is that this illness has manifested itself in my heart - and I kinda need that part to keep going!


I'm not sure how I arrived at this lack of fear of my life ending, and we could probably speak at length about why someone would or wouldn't be afraid. Maybe the nurturing part of me needs my loved ones to know that I'm not fearful, that it will help them in dealing with this. Maybe I am truly as content with my life as I think I am. Spirituality can play a big part in this sense of peace, that's a post for another day.


You may come to realize reading this blog how important my photography is to me (there's a connection here, bear with me). I immerse myself in learning every day, and one of my favourite resources is Lenswork magazine. Every two months I anxiously await delivery of the Extended version on DVD, and spend hours looking at the beautiful images, and listen to interviews with the photographers.


One favourite feature is publisher Brooks Jensen's podcasts, and in the most recent issue he included one called "Managing Fear". Before I share the link (these podcasts are available for free on the Lenswork website), I'll add that the photographer that you'll hear is Camille Seaman (her images are absolutely stunning, check out her Iceberg portfolios, link is below).

This podcast felt particularly poignant today for me. I may not be afraid of dying, but there are still a few things in my life that I want to no longer fear. Maybe her point will strike a chord with you too.

"Managing Fear" podcast: http://www.lenswork.com/podcast/LW0510%20-%20Managing%20Fear.mp3 (it's only a couple of minutes long)

Camille Seaman's website: http://www.camilleseaman.com

Lenswork Magazine: http://www.lenswork.com/

And just maybe one day you might see my images in Lenswork. That short bucket list of mine does include making a submission of my own!

Erasing the evidence

I'm here in bed with my laptop, catching up on this and that as I rest. I look around and today I just don't like what I see.

Across from the bed is a cabinet, and on top you'd see rows of pill bottles, a pill organizer, a pill splitter, blood pressure cuff, vitamins, and notes written at my doctor & hospital visits. Very organized and neat (this is still me after all!) but today it makes me cringe.

Since early this year this has been the room where I've spent a great deal of time recovering from surgery, dealing with the physical limitations that my illness places upon me (and those from the side effects of all these #$#$ drugs!) This week was especially tough and often it felt like even the short walk across the room was too far to go for the next dose of pills.

Enough. Really. I'm reclaiming this bedroom as a sanctuary.

Yes, I do need to spend more time here than I would like - but it has to become a more peaceful place for me. All this medical stuff is going into the cabinet, rather than on top in full view.

There's no chance at all that hiding them away will cause me to forget to take my meds. The simple act of waking up each morning sets off the meds schedule of "take upon waking" , "take one hour before first meal", "take with breakfast" etc. - you get it, I live by the clock and my meal schedule these days.

I'm feeling quite a bit better today than I have in days. So while I have the energy, I'm getting up to put all these reminders of my illness into hiding. I just don't need the evidence staring me in the face!

A few photos from a lovely afternoon

Yesterday I had my weekly checkup at the hospital, unfortunately the pericarditis is still there, it hasn't improved and that means more drugs again (eight different ones now - some to treat the inflammation, others to treat the side effects of those first drugs).

This is overwhelming for me; I pride myself on trying natural approaches to medical issues and prefer to tough it out rather than take even so much as a Tylenol. I feel like a walking chemical soup these days!

I'll admit to being a bit down after my appointment, my doctor had been hopeful that almost three weeks of steroids would have knocked my heart back to healthier state. He isn't crazy about giving me all these meds either but after conferring with several cardiologists we don't seem to have another option right now if we're to clear out the pericarditis in preparation for the "heavy hitter drugs" to treat my overall systemic illness.

What better way to cheer myself up than to go for a long walk through the city in which I used to live (my hospital appts are a one hour train/car ride from where I live now) with my camera! It was a spectacular afternoon, perfect strolling weather. Here are a few shots from my afternoon, it was easy to forget all about my illness, meds and pain for a few hours.

Today, I'm in bed. One of my new drugs can cause bone pain, and did I ever get hit hard with it today. Tomorrow will be better, I can feel it...

Is a picture worth a thousand words?

Over the last months I've had to spend lots of time resting. Not really what I'm good at to be honest, I'm much happier getting things done, usually multi-tasking. My husband has said that I seem to thrive on organized chaos and he's not far off base.

It's almost impossible for me to just lie there resting, as I had to for almost three months straight following my bone surgery in February. I'm very glad that I once again invested in a laptop when it was time to replace my computer last year, it was a godsend to be able to continue communicating with family, friends and clients.

I got hooked on listening to photography related podcasts, there are several I can recommend if you're interested in this sort of thing. This evening as I was resting (those steroids are taking their toll and I had to slow down a bit today) I caught up on a recent episode of "The Candid Frame"; this one an interview with photographer Douglas Kirkland (links at the bottom of this post).

Mr. Kirkland has had a rich and fascinating career, and there was one part of the interview that particularly caught my attention this evening. He was speaking to his process of getting to know his subject so that he could accurately portray them when he captured their image.

Now, as a portrait photographer myself I pride myself on getting to know my client with the same intention. Asking lots of questions before the session, trying to get a feel for how they would prefer to be portrayed.

As I listened to this interview it struck me that in my quest to have another photographer take our family photo (always having camera in hand I'm rarely on the other end of the lens) I need to think about this issue. And I'm thrown. How do I want to be remembered when my family looks at these photos after I'm no longer here? How had I not thought about this before now?

The vain part of me want to hold off until after steroid treatment (those steroid-induced chipmunk cheeks are taking over my face, despite my husband telling me that they're pinchably cute I don't want to be photographed right now), but it's not just about what I'll look like. What will my family & loved ones see in my eyes in these photos?

It's not like I've forgotten that this illness doesn't come with a happy ending. I know that unless a wayward bus and a moment of inattention catch me sooner, this illness will take my life.

Today for the very first time I thought about how people I know might have some judgement to pass about me after I'm gone. Will they say I was a loving person? Will they think that I did my best at whatever I attempted? Wishful thinking on my part. Certainly not all thoughts will be positive, I'm well aware of my numerous faults and quirks and I'm not done yet trying to be a better person in this lifetime.

How do I ask a photographer to catch the truth of who I am when I'm not sure of the answer to that myself yet?

http://www.douglaskirkland.com/
http://thecandidframe.blogspot.com/

Those aren't acorns in my cheeks!

The good, the bad and the (not yet) ugly....

I've been on steroids now for two weeks. Everyone's experience will be different, but I must say this has been an interesting road.

My skin is smoother and clearer than I ever remember....but I'm also bruising more easily.

I have unbounded energy and strength on most days, but next to no sleep! I'm lucky if I'm getting four hours a night. Getting lots done though (and working a bit too thankfully).

I'm not gaining weight overall, but it's a little disconcerting to see my face expanding every day! My dear husband and daughter tell me they see little difference, but it's okay to tell me that you do.

Most days I have a great sense of elation, but I've had two days of the nasties. Family was warned, and I went into seclusion. Tears were cried, vengeance wreaked upon the vacuum cleaner hose. Don't ask (but the vacuum cleaner and I both survived the altercation).

I can finally breathe easily without any chest pain most days! The drugs are working.... my heart races a bit throughout the day (but that of course is from seeing my husband come round the corner) :-)

I had almost two weeks of not feeling any leg pain from the bone tumour, pretty wonderful - I haven't bounced around like this in a long time. Overall muscle and bone pain kicking in now, I understand this is normal at this point in the treatment. Not nearly bad enough to keep me down.

I'm not as hungry as I was the first week on treatment, I think I've learned just to ignore it for the most part. Although I did get into a box of crackers at 1 a.m. this morning, the first time I've given in to the hunger during the night.

More hair seems to coming out in my hands when I shampoo. Thankfully not in any patches, it's just thinning out a bit.

We're keeping our fingers crossed that my doc hears no evidence of pericarditis at my appointment on Monday. If it's still there, the dosage goes up (eek!). If not, we start the weaning process (you can't just quit prednisone, normal adrenal function of the body has been altered and it needs time to produce its own cortisol again).

The thought of a full eight hours of sleep has me drooling far more than the hunger that comes with this treatment!

It took me a week to find this funny...

In my last post I mentioned that I'd had a bit of trouble with my first day on Prednisone, requiring some quick blood tests to try to explain a fever that cropped up. What I didn't tell you is what a baby I was about one of the tests!

In just one more of the weird coincidences that keep cropping up of late, it turned out that the doctor staffing my local walk-in clinic that evening last week is the wife of my regular cardiologist (sad to say, I have several looking after various cardiac complications).

As required, I gave her a bit of background on my medical status and she mentioned that her husband would find my diagnosis intriguing. We put a few pieces together to realize that not only was I her husband's patient, I'd seen him just a few days before going on the Prednisone. She called him to get his slant on what should be done next - my luck in getting amazing medical care continues!

Back to my test. Along with standard bloodtests, the doctor said I needed to have a throat swab done to check for infection. I paled, backed up, and quickly blurted out that I'd pass on that one - thank you very much! With gentle persistence and an explanation of why this test was important (and assurance that she - the clinic doctor - was really good at doing this test) I finally allowed her to quickly swab - with my husband holding my hand (and a tear in my eye).

If you know me well, you'd probably find this as surprising as my husband did at the time. I'm proud to say that I can be one brave soul. Some pretty tough issues have tested me in this lifetime, and I seem to be able to handle them with a smile on my face. But a silly little throat swab made me run!

Thanks for not making me feel stupid for my fear Dr. S, and thanks to my sweet husband for holding my hand. For a few minutes I felt like a terrified, wide-eyed three year old. Goodness, I think most three year olds would have handled the test much better! Yes, I'm as quirky as all that...

Trying not to eat my cereal bar wrapper...

It's day 4 on Prednisone, overall not so bad so far!

I had a bit of a rough start with a fever on the first night, my doc had me go for blood tests at the local lab just to make sure all is ok (Prednisone reduces resistance to infection, any fevers should be investigated asap). All was in order, it must have been just one of those things, in fact the fever has returned a few times now but I don't feel ill with any other symptoms.

Minor side effects have included a touch of nausea and stomach pain, a bit of dizziness, and lack of sleep (last night was less than 3 hours, and not much better on the previous nights). Oh, and the infamous Prednisone mood swings kicked in last night for the first time, bless my family for not slapping me silly for being so weepy and miserable for a few hours there! They know exactly when I need a joke and a hug to feel a bit better.

And now for the good stuff - unbelievable energy (my family hasn't seen me move this fast since pain from the bone tumour started up last summer), No pain in either my chest (from the pericarditis) or in my leg (from the tumour), and I've actually dropped a bit of the weight that I'd put on while taking other meds over the last few months. Normally Prednisone can pack the weight on quickly. I'm prepared that this will likely still happen but for now I don't mind the lower number on the scale!

The hardest part is the intense hunger that kicks in just after lunch and sticks with me until I go to bed. A hunger like I've never experienced before. Really. Don't leave any food laying about, 'cause if you were saving it - it's history if I catch sight of it. Closed kitchen cupboards are my friend right now, in fact locks might not be a bad idea. I'm trying very hard though to keep to normal portions and calorie intake, and hopefully I'll be able to keep the expected weight gain from getting out of control.

Off now to put this energy to good use, anyone need their garage cleaned out? Oops, I guess I should start with our own...

Started on Prednisone

It's been an eventful week. I can do without eventful weeks like this!

In an attempt to clear up this persistent pericarditis that I've been troubled with, my cardiologist had me double up on a med called Colchicine this past weekend. Not quite the expected outcome, it actually made the symptoms of pericarditis quite a bit worse (chest pain, difficulty breathing, exhaustion, dizziness, dry cough - I'm adding a bit more medical detail in this post because dear and thoughtful friends let me know that they were looking for more of an update on my physical status!)

A quick call to my diagnostician in the city (have you seen the TV show "House"? His team works in a similar fashion, minus the cranky SOB character that Hugh Laurie plays) got me into see the team the next day (yesterday). I'll go further, not only are they minus "Dr. House" they're an amazing team of caring and dedicated medical professionals who have made me feel like nothing is more important to them than treating my illness as effectively as possible while taking my comfort and concerns into consideration at all times. I'm truly blessed to be their patient.

It was agreed that it was finally time to try Prednisone (a corticosteroid used as a last resort for pericarditis). I'd been dreading this step. I've heard all kinds of nightmares about this drug (weight gain due to water retention, huge appetite leading to additional pounds piling on, moonface, crankiness,restlessness, bone density loss, insomnia etc.). My medical team had me on all kinds of other drugs prior to this hoping to avoid Prednisone, but it appears that if I want rid of this nuisance, it has to be!

I took my first dose this morning, and I'll admit that I raised a bit of a fuss about it. A few tears as I told me husband "see you on the other side!" meaning nothing more dramatic than hopefully my moods wouldn't change too much and that after the course of treatment I would feel like myself again. Minus the pericarditis of course.

It's been about six hours. Some waves of nausea, a period of fairly intense restlessness (maybe not such a bad thing, I went on a tidying frenzy), and a BIG appetite that I'm trying hard to ignore. Overall not too bad. I'll be cautiously optimistic, I'm aware that side effects can escalate as treatment continues.

Feel free to share your experience with prednisone if you or a loved one has been on it. Especially if you have any suggestions for dealing with the side effects. GRRRRRHHHHH! (Just kidding, I haven't been feeling irritable. Yet. Because if that happens, my family might be seeking additional meds that will put me to sleep for a few weeks. :-)

Peering out the window...

As a landscape photographer, I spend a lot of time outdoors. At least I did before I got sick. And now I spend most of my time indoors because I'm either recovering from a surgery, trying to deal with side effects from various meds that I'm on or just too darned tired to get myself out the door.

And this hurts. Warm weather has finally arrived in my corner of the world and I'm sidelined most days. I'm aching to be outside. Taking walks with my family, tending to the garden (not my favourite job, but the being outside part suits me just fine!) and photographing. I used to think nothing of hauling myself out of bed in the wee hours to arrive at my destination before the sun rose just to get that perfect light for my photograph (and it was usually darned cold too, but totally worth it)!

I know this is temporary (no more surgeries scheduled for now, and I'm confident that the next round of meds will finally get rid of a nasty case of pericarditis that's been taunting me) but I can't help think about when I do get outside I need to make every moment count. I'm hoping it's still quite a few, but I just don't know how many summers are left for me to appreciate.

It's ironic that as a child I'd much rather have curled up in my room with a good book; getting outdoors simply didn't interest me. Somewhere along the line I started to see just how beautiful this world is in its colours, shapes and textures and felt the pull to capture it all with my camera. And now I just can't get enough.

Ok, I'll admit this has kinda been a "feel sorry for myself" day. They don't happen often, but it happened today. I'm feeling worn out, and upset that I'm wasting time doing much of nothing right now.

I leave you with a photograph taken a few years ago. I'll be back out there again soon. Promise.

Who's looking back at me in the mirror?

Admit it. We've all thought about it. What would I do if I were diagnosed with a serious illness and heard that I would have a shorter time on earth than generally anticipated? Travel to places I've always wanted to visit? Try daring sports and activities (sky diving, anyone?) Meet a person whom I really admire?

There's no right answer of course, and everyone will have their own "bucket list". Maybe you'd be physically limited in some way, maybe finances would be an issue, and maybe you'd just change your mind if this really happened to you (and I pray that you never find yourself in this situation).

Straight up - yes, I hate being in the position where I have to think about this.

It was an acid test. Was I truly as happy as I thought I was before my diagnosis? Did I have regrets, important tasks undone, a life not truly lived? I found myself overjoyed (after having had time to digest my diagnosis, that's a post for another day) to find that my bucket list is truly very short. My life was wonderful before the diagnosis, and will continue to be great in many ways. It's not a charmed life in the traditional sense, we struggle with many of the issues that families deal with. But we're a family, and I know that through the best and worst of the road ahead we'll be getting through this together. For that I'm grateful beyond words.

I look in the mirror, and although I sometimes have a hard time taking in what I see happening to my body in the purely physical sense - in my eyes I see who I am. That part hasn't changed, and maybe I see that more clearly than ever.

As for that bucket list? More on that later. Trust me, it's short (but sweet!) What's on your list?

Anonymously Yours....

I've been asked by a few readers of this blog (and thank you for the great feedback after my first entry!) why I've chosen not to share either my name or the medical condition that I'm dealing with.

First my name - it's primarily economics! I'm self-employed as a photographer and I'm doing my level best to work as much as I can given whatever my current state of health might be.

I have to appreciate that a potential client coming upon this blog by Googling my name may hesitate to book me if they have any doubt about my ability to follow through on the job. Without knowing me personally they wouldn't know just how passionate I am about my work, how dedicated I am to delivering a great customer experience and how determined I am to keep clicking the shutter!

As for my medical condition (I say "my", as if I own it! I'd gladly sell it to anyone who could dispose of it safely with no harm to others....) again it's that beastly Google issue. You can scare yourself silly looking up any medical condition on the net, and my experience will be different that anyone else's. If someone happens to visit the support group for this particular affliction they will have an opportunity to visit this blog via a link and can draw their own conclusions. For now I feel strongly about not having this blog show up when someone Googles the name of the illess.

On the medical side of things... tomorrow I get the preliminary results of a biopsy taken from my back two weeks ago. Stitches are out and the incision is healing well. Still dealing with a rather persistent case of pericarditis (an inflammation of the lining of the heart) and will probably need to switch to stronger meds very soon. I detest taking meds of any sort, this is a rather big obstacle for me to overcome!

Stitches come out tomorrow

Really now, why couldn't I have appreciated my body more when it was young, healthy and looked pretty good in a bikini (except that I'd never have been caught dead in one at the time!)?

Tomorrow I have an appointment to have stitches taken out, having been deftly sewn in by a surgeon 10 days ago when I had another biopsy done. This time on my back, it was a whole lot easier to recover this time around! The last biopsy (February) was on my femur and had me bound to my bed for the better part of twelve weeks to avoid fracturing my leg.

I look at myself in the mirror in the morning as I dress, and most days don't notice the four scars that can be found on my chest(2), leg and back. Not too mention the half dozen or so from various mishaps growing up! I try to see that for 44 yrs, I'm looking pretty good!


Despite that I'd make a decent gameboard for tic-tac-toe by drawing in just a few more lines at my surgery sites, maybe this summer I'll find the courage to wear a bikini after all!