Tuesday, July 24, 2012

Lost in limbo...

One of the definitions of limbo is an intermediate place, transitional, or midway state or place. Yeah, that pretty much sums it up... Stuck somewhere between healthy and dying, between enduring the transplant process and getting on with my life. As many of you may recall Sarah, the kids and I traveled to Seattle recently (as in over a month ago!) for my first annual post transplant checkup. It was NOT what I expected... First they put us up in a very crappy hotel farther away from the hospital than the one they had previously used, seems they're making some changes and will eventually be sending even the long term patients there. I can't imagine how much worse that will make an already difficult process. It was so nice to have an apartment to ourselves with secure parking and to have it furnished, even IF the furniture was far from what we'd have had in our home. The extended stay hotel has a pay as you wash laundry room that is shared by all the other guests and down the hall as opposed to having laundry facilities right in the apartment, and that's just for starters. As patients many of us had, at our own expense, added things to the apartments to make our stay as well as that of patients and caregivers staying there after us more comfortable, if not pleasant. Some bought second hand furniture that was in better shape than what the VA had furnished the apartments while others simply found and left things that made the apartments feel more like home or were inspirational. I wonder now what will become of all those things that were left with such good intention, without thought of repayment, for those to come after us...

To further add to my disappointment in the annual checkup I had no idea what to expect but thought that I'd at least be meeting with the doctor at some point to discuss how the previous year had gone in terms of my recovery and healing as well as what they thought the future might hold based on their experience. Such was not the case. There were three days of appointments, including my FAVORITE, the bone marrow biopsy, after which they sent us on our way. Seems to me they could have just done the tests in Palo Alto and sent the results to them for review and saved us the trip. But, looking on the bright side (which is something I try very hard to do in every situation) they reimbursed us for most of the travel expenses and we took full advantage of that by utilizing my Access Pass for the National Parks and National Forests and visited just about every one we could find both on the way up to Seattle, around the Olympic Peninsula and down the west coast along the Pacific. I must say that although driving day after day from one campground to the next was hectic it was more than worth it. We saw things that I could not have, in my wildest dreams imagined. It was an opportunity to experience new places and bask in the glory of God's wondrous creations, as well as make lasting memories as a family. That alone was worth the disappointment I experienced in not knowing where I stand and where I'm headed regarding my health. I guess you could say it was a lesson in living in the moment and making the best of what one is given and I'd do it all over again in a heartbeat.

So where does this leave me? Well, I'm not really sure... The Puget Sound VA sent me and my hematologist in Palo Alto copies of the test results, but it's all Greek to me. Without a professional to interpret all those numbers and define, in layman's terms just what those big words mean it may as well be written in Arabic or Japanese for all the good it does me. I DO know that the results were all good and better than any of the doctors would've thought possible, so there is that. I'd just like to know how soon I can be expecting to wean off some the meds and which, if any, of the restrictions can be relaxed or lifted altogether. And so we wait, patiently for now until my patience finally wears thin and I start prodding people gently with emails and phone calls. I know and fully respect that the doctors in Seattle have many, many more patients than just me and that there are more coming in all the time as well as those who are inpatient right now fighting the fight of their lives but that only goes so far toward answering my questions and allowing me to get on with the rest of my life, however long it may be.

Well where does that leave me in the mean time? Well, I have been spending a fair amount of time in the garden (the head nurse in Seattle didn't like hearing THAT very much) and it is getting a bit out of hand with the tomatoes growing tall enough to block the sunlight for the peppers which Connor and I harvested Monday and I'll be making into jalapeno jelly later this week. The potatoes are growing very well as are the squash and zucchini which we have already begun to harvest and enjoy. I must tell you there is a certain aspect of eating food that you just picked from a garden not fifteen feet from the kitchen and savoring all the effort that went into growing it with each bite. It adds a palpable flavor that simply can't be described. I strongly suggest that you too try to grow something, even if it's just one tomato plant in a pot on your patio or deck or a larger plot full of all sorts of vegetables. When you eat food that you grew yourself you'll thank me, I promise, and passing along the knowledge and experience of gardening to your children, for those who have children, will pay you back a hundred fold at LEAST! Just trust me and give it a try and remember that if at first it doesn't work out to keep trying and don't let yourself get discouraged.

I've also started cleaning and sorting the things that have accumulated in the garage and intend to start doing some small scale woodworking again. Nothing too big or that requires a lot of expensive power tools, just smaller projects that I can finish with just hand tools for now. I'll move up to acquiring those noisy whirring space devouring finger shredding machination if and when my needs outgrow the hand tools I have on hand and as budget allows. If I've learned one thing it's that you get what you pay for when it comes to tools. The cheaper the tool the harder you all too often have to work to get the desired result and they rarely last whereas the better quality tools, although they come with higher price tags, will perform better and last longer even retaining more of their initial value if and when they are passed on to the next fellow woodworker.

I'm also looking at treadmills and other exercise equipment so I can start getting back in shape and continue to rebuild my strength. Things are going very well at Knight's Quest and I couldn't ask for a better teacher of friend to coach me along as I rebuild what once was than Gemini. His belief in me adds immeasurable confidence and steadfast determination to the fight to remake myself into what I've always wanted to be. I am truly blessed to call him friend. I'm also going to start going for walks or riding my bike every day and recommit to working on the pell in the backyard, no really... I mean it this time! See, I realized something while I sat around moping about not knowing what the doctors thought of my recovery. I realized that it doesn't matter if they tell me today or next week what they think, it's up to ME to write the next chapter of my book, to continue walking on MY journey because it's just that... MINE! Besides, what do they know anyway? They're just “practicing” medicine, I'm the one living! You can spend all the money in the world and attend the most prestigious of schools and never come close to what I can do. All that knowledge and experience will only give them an opinion of how I'm doing and a guess at what they think I should do next or how I should live my life. They don't know any more than anyone else who I am or who I have the potential to be... Only God Himself knows that, and even so it's up to me to make the choices and do the work that will ultimately help me reach that full potential. This story, the story of Tracy, of who and what I am and will be is far from over and if I have anything to say about how it's written then the best is yet to come!!! If you've enjoyed the story thus far I encourage you to stick with it because this story is just getting good, you won't want to miss the end... I promise!

To that end I've started to sort out who and what I want to be as well as what I want to accomplish with my life. I DO know that I will forever more have to shun the sunlight and that's no small task living in the Central Valley of California. That means that working construction like I did before is out of the question. I also know that unless they lift the no sawdust restriction I won't be working in a cabinet shop again either and even if they do those that I found near me, that is to say within a distance from where I live that I'd be willing to drive to every day, don't pay enough to make it worth my time. I also know that building furniture and cabinets for other people pretty much took the joy of doing it out of me. Sure I enjoyed building those things and the “special projects” that always found their way to me gave me a certain satisfaction it was always on someone else's terms. Build it like this in this time frame using these materials... Not that I have a problem with that but it stifles my creative input and left me without much desire to build on my own when I got home to my own workshop. Soooo... I've been thinking a lot lately about another long set aside dream of mine, becoming an architect. That of course will require a fair amount of work and education as well as researching if there is a market out here for those skills. In the meantime I've also set my mind to writing a book about my experience with cancer with the hope that it may help others to find their way through whatever difficult time they may be facing. True, I've never written a book before nor do I have any “specialized” education that makes me especially qualified to do so but I do think I have a relatively firm grasp of the English language, certainly more than the majority of people I see writing things on FaceBook or even in some newspapers and magazine articles. That is to say I know when you're not using your correctly and that they're over there using their poor grammar... It really does make a difference gang. I also have the kind words that many of you have passed along with your words of encouragement and gratitude regarding my ramblings here on my Blog. If I went solely on those alone I'm pretty sure the book will be a New York Times Best Seller... I certainly thank you for that, and for all your support in its myriad forms. I don't think I can ever fully express how much it has meant to me. Thank you...

That's pretty much all I have for now. Rest assured as soon as I find out something, ANYTHING from the doctors I'll pass it along here. Until then, keep everything you say and do positive and try to drown out the negative voices in your head, try to practice positive affirmation and most importantly be excellent to one another. Yes, even that person you'd really rather wish the worst upon... They're the ones who most need your kindness, for you have no idea the trials they're facing. Until next time, I bid you peace.

Yours, Tracy.

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