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?