Thursday, May 31, 2012

Sinking The Boat...and other great ideas!

I remember this moment as if it were yesterday.  This was our first stop on an island that what would soon become our favorite spot in the boundary waters canoe area of northern Minnesota.  We had not been resting long when my husband looked at me and said, “I think I’ll try to sink the canoe.”  The fact that this was my very first canoe trip, combined with the fact that we were a long, long way from any sort of civilization, as well as any cell phone reception, made this comment one of great concern to me. Doing the best I could to hold back any indication of doubt or panic, I simply said, “Why would you do that honey?”  He went on to explain to me that all canoes must be tested to see if they float after being capsized. He and his father had tested the canoe many years prior after they had first built it, but since he had re-fiberglassed it recently and made some fixes he had not yet tested it again to see if it would float.

I still didn’t like the idea. What if it didn’t float? What if we couldn’t get it back out of the water? What if we damaged it – this beautiful forty-year-old canoe? What if…? I simply did not want him to do it and I remember a bit of an argument because of his determination to find out. And so, with me standing on shore ready to take a picture of this most sure disaster to come, he gently rocked the canoe back and forth. With each dip the water slowly filled the canoe until only the stern and bow could be seen.  And then, in a moment of silent stillness, he stood and waited. Holding tightly to the rope, he watched as the slack let go and the canoe floated gently, barley above the water’s surface. The moment captured here in this photo.

My husband has taught me a great deal about fear; mostly, how to respect it and learn from it – and not run from it. It’s taken me books upon books to understand something that has always been second nature to him. Reality is exactly that – REALity. It’s what’s REAL. And it is far better to move towards that which is real than to struggle against it or worse yet, to pretend it does not exist.

This does not mean that life will always be easy. There’s risk and vulnerability involved. And sometimes we have to take on a lot of water before we realize whether or not we can float. But it’s not until we understand the truth of the matter that we can live in the honesty where joy and freedom reside. It’s in this space that we experience this world fully – not holding back, not preparing an escape route, not looking for alternatives – living fully in the reality of the present moment. 


I wrote this post for my facebook page today. Sometimes the idea for what I want to write comes to me with little to no work involved. This often happens when I have been reading something really good or I have had some sort of event in my life that demands my writing of it. And then, there are other times when I go looking. Today was one of those days. I often start by either flipping through some of my favorite books or I begin to scour the thousands and thousands of photos my husband has on file, waiting for something to jump out at me. The flipping didn't work. Nothing seemed to grab my attention. So I opened up our picture warehouse and began my perusing. Immediately, this photo pulled me in. 

I've looked at this picture hundreds of times. It's in our BWCA 2008 folder and is one of my favorite places to look. The trip itself changed my life. But for some reason, this picture told me something different today. As is often the case, it told me what is going on inside of me. Which, of course, I did not realize until I finished the writing! Kind of like a dream will do upon waking. 

I had a "boat load" of appointments over the past two weeks. It seems like my main doctors reached their six month evaluation point all at the same time. But it was during these visits that I made some rather big decisions. Decisions that came on the heels of a lot of pain and frustration. Decisions based on the potential for serious long term side effects, the ongoing inability to recuperate from chemo therapies and the recent "leveling off" of certain blood work. I have decided once again to try and taper off the prednisone that I have been on for three years as well as taper off the IVIg infusions. 

I've tried twice before to taper off the prednisone, only to return back to higher dose due to intense pain and illness. Prednisone is the drug people "love to hate", or so the saying goes. It's a miracle drug in regards to my illness, but the side effects, both long and short term, have serious consequences. But after reading Coping With Prednisone by Eugenia Zuckerman and Julie R. Ingelfinger, M.D., I have come to the conclusion that I have not given tapering a fare shake. In a nut shell, it is normal to feel extremely ill during the tapering and for months thereafter. As I gauge what I was experiencing with what seems to be acceptable withdrawal, I have decided that I can give this another chance. But I'd be lying if I did not tell you that it scares the shit out of me. 

In regards to the IGIg, this is my thinking. I've been on infusions for well over two years. When I began on them I was not on two of the other major chemo therapies that I am on. I would like to see if these drugs alone can manage my illness. The IVIg was not treating the autoimmune illness itself, it was treating a symptom - the peripheral and central nervous system issues I have been having. The other drugs I am on actually control the illness itself. It could be quite possible that these medications are now keeping things in check and I would no longer need the infusions. And the only way to find out is to fill the boat with water!

My initial reaction to these thoughts as they entered my mind was pure fear. Fear of the "what if". But as I worked through the fear what I realized was that my hesitation in attempting this was based out of my belief that I could somehow control my illness. A control that had become blind to ALL possibilities. Which meant that maybe, just maybe, letting go would bring about something better and not necessarily something worse. Once I realized this, I felt very compelled to speak to my main doctor about it. The appointment went very well and we were both in agreement as to what should be done. Let's see if the boat floats!

So here I am, week three on my first decrease of prednisone and one half infusion later, and I'm feeling pretty shitty - but giving it my best shot! I have to say, I'm not that thrilled about potentially messing up my summer with withdrawal symptoms. But is there really any good time? Nope! No time like the present, that's what I always say!

I do have some exciting news to report!! As many of you already know, being outdoors has always been very important to me. There is no holier place for me than the depth of the woods, surrounded by Nature. I have not been camping since getting sick. In fact, there is quite a dissertation in my application for social security in regards to the things I no longer can do, and camping is a big part of that. There is just no way that I could withstand the amount of work it would take to set up camp, let alone sleep on the cold ground, be without heat or cooling (whichever the case may be) or especially be any distance from a bathroom.

So this is my most recent anniversary gift (coming up on June 4th!)...

Completely loaded with one of these... ;-)

 ...and one of these...

....and some of these...

...and air conditioning...and heat...and all the amenities of HOME, right there in the woods with you!!!

Now, in my pre-illness days, I would have shunned this whole camper idea with all the piousness of a die-hard naturalist. But today....this little home away from home has made my dream of being out in the woods a reality again. 

Did I mention I have the best husband EVER?!?! Just can't imagine how I ever got so blessed. 

So, our first attempt will be this weekend, about 15 minutes from our real home as to not travel too far away this first go-around. I can hardly wait. Now THIS will most surely give me something to write about!

Until then, peace to us all ~


Michelle Sevigny said...

Yee-haaa! Camper looks awesome. Even that was about letting go too, wasn't it? Letting go of the "die-hard camper", and all that... it's all about practicing ... good for you!

I love how you saw a completely different photo when you looked at your canoe photo this time around and I like the comparison to your own letting go situation in regards to your health.

Best wishes, always.

abcsofra said...

What a sweetie to buy you such a great gift! Course now I am no camper and never have been but I love that you love it and can now get back into the wild...errrr....nature.

And are you tapering really slow with the pregnisone? I remember when I did tapers it was this crazy schedule that my doc came up with. So crazy I had to follow a written schedule. It started with a taper then ramped back up to normal for a day or two then back down again then back up for say just a day. Went like that until I was down say the .5 dose for about two weeks then started all over to try and taper some more. I often find that doctors try to taper too fast and that is what causes the havoc. I never had issues when I tapered the very slow and methodical way.

Hope it all works out for you and the it floats your boat.

Theresa said...

Michelle, thank you!! I've never met you, but I can honestly say that I truly felt your presence when I read the words you wrote. I really like you, and I have a feeling that if we were to ever meet in person, that would be verified 100%!
This whole damn illness has been about letting go - but you know what, I've not let go of anything that hasn't made me a better person. Go figure. I didn't have to be a marathon running-super mom-outdoor fanatic to have a good life...or to truly love myself. Yep...I really truly love myself. Thanks for being there Michelle.


Theresa said...

Yes, I agree...a BIG SWEETIE! And I'm sure he'll protect me from all the lions and tigers and bears...oh no!

Yes, I am tapering very, very slowly. In fact, it will most likely take me months to get off the 5 mg that I am stuck on. Right now I am on 4 mg for two months, and then we'll go from there. Anything after 2 mg happens extremely slow. They already know that I am in adrenal failure - I have been for a couple of years. So I will be tested constantly to see that my own system is working correctly. I don't really care how slow I go, just that I continue to go in the right direction!
It's crazy how doctors differ on this. I have had doctors that taper weekly until done - and that has been a nightmare. The doctor I had at Mayo suggested taking a year for just 5 mg. Big difference. I think I would rather be on the safe side!

"hope that it floats your boat"!!!! You make me smile!! Think I'll use that one for awhile...I have a whole new perspective.

Be well, my friend. Oh, and I really enjoyed your last post. I liked looking into your eye!! ;-)

Tweedles -- that's me said...

Sometimes when I am in the search mode and looking at photos... all of a sudden I see one and its like a light goes off in my head and I see it in a whole different view.
Sometimes the forest speaks that way too- very quietly and nudging softly. And only if I listen carefully can I hear what it is saying. That to me, reminds me of the canoe- where it does not seem possible for the outcome to be okay, but letting go of that fear and trying- showed you it really was okay. Sometimes it is very hard to make peace with the (letting go), but as you say,,,, what do you have to loose? Just maybe it will be better.
I loved your story of the canoe- of course I need to read it over and over again, so that it sinks into my bones.
Your hubby is the best hubby ever, to do that for you. To get you a little home away from home that will take you back into your beloved forest.
I think you are brave to start a new "'plan of attack on the prenesone". My mom was on it for years and years.. and just maybe like you said... its worth a try.
I loved your post, and so happy for you and hubby that you get to go camping! Toast a marshmellow for me!

Theresa said...

Tweedles..."nudging softly"...yes!!! That is a beautiful way to describe it. And I can promise you that I will think of you often - because I do that already! But I will most surely toast a marshmallow in your honor...maybe even make a smore in your name! ;-)Wish you could come for a visit!

Christine said...

First of all Happy Anniversary as I realize today is June 4th!! I love your camper. It is a dream that Chuck and I have to get a camper some day and travel. Yours looks quite comfy!

Thank you for metnioning that prednisone book. I will check it outas I am weaning off prednisone also. Every single time I do, I always end up back on it; not usually right away but eventually. I am praying that this time will be different. I admire the challenge you are undertaking of weaning off it as well as the IVIG. Wishing you the best of luck!!

Jennifer said...

I grew up near water, so that was always what I was drawn to, not mountains and forests. Although I still feel most calm and soothed and inspired by water, I began to feel very inspired by trees the summer I was begin diagnosed. You can read about why here:

I LOVE that you have this new camper. I want one now too. :-)

Please enjoy. Take naps, read good books, rest, sip lemonade.

Be good to yourself and gracious with yourself as you switch your medications.

Much love to you...

Theresa said...

Thank you for sharing my joy, Jennifer. It just means so much coming from someone I KNOW understands completely what this means. This weekend we made another big decision. We found a very nice spot on a lake, on the edge of the woods in a small resort in northern Wisconsin - only an hour and ten minutes from our back door. By the end of the weekend we had purchased a seasonal spot and set our camper down for good. NOW it's very, very easy for me. All we have to do is hop in our prius and in a little over an hour we are there. All I have to pack is my medications! This whole set up is the greatest gift my husband has ever given me. I feel like I have a part of my life back. This past weekend while we were there I was really, really sick. But it didn't matter. Everything I needed was right at my finger tips and the sounds of nature and the water just eased my pain. And for us (with seven daughters, two dogs and a cat) getting away from "responsibility" is a HUGE treat - even if it's only a Friday to Sunday deal! No TV, no phones, no internet...just rest. This has been one of those "out of the box" thinking things that I just never even entertained - and what a priceless gift it is!

Much love to you, my friend. Much love.