Tuesday, May 3, 2011
Seattle:week one.
Tuesday, March 29, 2011
We can rebuild him...
Now onto the nitty-gritty stuff. We have been in contact with the Seattle folks and the date is set for April 27th to begin final testing and the preparatory regimen for the BMT (Bone Marrow Transplant). This will give us a week after we get back home to finalize our plans and get our house in order for others to take over the day-to-day operations of TrayCorp. Sarah's Mom will be staying with the kids at the house and her Dad will be relieving her as needed (we'll work that schedule out a bit later) and we have a new foster home for Seargent Ichabod Pepper (the cat) and even people to check in on the dogs and take them out of the house to get some exercise and give Grammy a break. Sarah and I cannot fully express in words how much all this support means to us, there just aren't words to do our gratitude justice... We're not suite sure how things will work in Seattle as far as logistics with the apartment (laundry, grocery shopping etc.) but the people we are dealing with there are consummate professionals and as I'm fond of saying: “This ain't their first rodeo.” This is what they do for a living and as I have been told on numerous occasions, this is THE best place in the WORLD to have the BMT. I trust that they will guide us through every step of the process and I trust that the folks we have taking care of things here are top notch too. We have been truly blessed to have you all in our lives and we are SUPREMELY grateful for all that you have done and will continue to do for us.
The astute among you may have noticed that I did not mention Ireland... well that's because it's simply not happening, at least not now! I WILL go there, someday but as God has shown me there are simply more important things to tend to right now. This was hard for me to take as it has been a lifelong dream but once I was able to really think about it I realized that it's not a dream lost, just a dream on hold until I am in better health. Who knows, maybe I'll HIKE Ireland... the whole damn island!!! (it's mine ya know!!!) -wink-
I've been giving something else an awful lot of thought lately too, the life giving generosity of my donor. I can stop wondering who it is... is it a man, woman, American or perhaps from another country? Will they want to communicate with me or even agree to meet with me after? I guess I always had it in my head that I would be able to at least say thank you... but I wonder. Perhaps they are very reserved and don't want that. How do you think you'd feel if you were the donor or even the recipient? I'd love to hear your thoughts... Leave a comment or email me.
Wednesday, March 16, 2011
The day the Earth shook, and then stopped
Thursday, February 17, 2011
Thank you for your support.
Hello again friends and neighbors, I trust that you all are warm, well fed and healthy or at least on your way to realizing these things. I already know you are loved, because I love you! There have been some interesting developments of late and a very good friend of mine is once again asking for your continued prayers and support, but I’ll get to that later. First, the developments!!!
A couple of weeks ago Dr. Kao called me, she’s an associate of Dr. Martin who sees Dr. Martins patients in Livermore. I had gone in to have blood drawn and there were a LOT of vials sitting in the rack before I left, perhaps a dozen. These were ordered by several doctors (it’s GREAT to have a “team” looking out for me!) and she wanted to go over the results of those tests. Everything looked good except for the liver function tests being high. It was nothing to cause alarm and she said it’s normal after the spleen is removed. Everything is still compensating for its loss, well the organs are, I for one am happy it’s gone! She also said that the Exjade that I take to get rid of the iron could have something to do with that so she had me stop taking it, much to my relief. That stuff tastes HORRID! In addition, the hemoglobin count was… are you ready for this? 9.7!!! Let me put that into some perspective for you, prior to the surgery in early Sept. I was receiving two units per week and hovering between 7 and 8. Since the surgery I have received two units every other month and only ONE unit on January 6th. That means that that ONE unit has not only lasted for over a month but has helped me maintain a near 10 count! Go ahead, wipe that tear from your eye, I am too.
Also of note, the Puget Sound VA called on Monday and wanted some samples from Sarah to see if the kids could be potential donors. I am all over the place emotionally about this. I don’t want them to have to go through this, and my biggest fear is that the worst-case scenario happens and post transplant I develop Graft vs. Host disease after receiving their marrow. If I were to die as a result, would they blame themselves for that? Don’t tell me these are silly thoughts or to only focus on the best possible outcome, this is serious stuff and as such, needs to be thought out well in advance. All the potential outcomes weighed in and measured, then a decision made. Fortunately, with things going the way they are there should be plenty of time before such a decision needs to be made. The whole idea still has me more than a little uneasy…
I have started to work out in Frank’s shop a little and also in my garage, testing the wings of you will. I am nowhere ready to go back to building cabinets and furniture. Because of this I have joined a local gym and enlisted the aid and counsel of a personal trainer. I have met with him 3 times now and things are going great, albeit slow. I feel as though it’s going to be a long slow road but I am determined to see it through to the end, one grueling repetition after the other until I am as good if not better than I was before. I’m still not sure what I will do for work but I will worry about that when the time comes. First things first, I MUST get back in shape! One thing that crossed my mind while I was out at Frank’s working on a project I call the “treadle table” was this: We MUST put the time into the prep-work, lay a good solid foundation, if we don’t all anything that follows won’t be able to reach it’s full potential. So too must I lay the proper foundation for optimum health.
Yet another aspect of my long-term health is you, each and every one of you. The things you say to me, the support you give, and the prayers you offer on my behalf, all of that is a HUGE part of my recovery and my future. I cannot begin to thank you enough; all I can do is “pay it forward” to others in need. I think that’s the way it’s supposed to work anyway. I don’t think it is meant to be give and take, but that it should be spread throughout the world, passed from one to the next. I don’t think any of you do it for the thanks anyway, you wouldn’t be here if you did. I myself would make sure of that. This leads me to my very good friend Arlene’s letter to me a couple of weeks ago. I’ll simply share it here for you all to read:
Our prayers are working! I'd like to keep them going...on a more regular basis. So, at noon on Sundays I'd like you to say a prayer or think good thoughts for Tracy and his family. I bought a candle in a glass (found in the Hispanic section of the grocery store), and decorated it with pictures of Tracy to light on Sundays. Starting at noon, if we're home, I'll keep it lit and say a prayer or think good thoughts for Tracy and his family every time I see the candle. That's my commitment for as long as it takes for Tracy to live longer than 15 years. Please join me in praying for a healing for Tracy. Every time you think of him please picture him old and playing with his grandchildren and going to their college graduations. We can make a difference!
Thanks, Arlene
I’m asking you to help Arlene help me. I simply can’t do this alone, I need your help, your prayers, and just a little of your time every Sunday. If that time doesn’t work for you, pick another time and stick with it each and every week. Just like those commercials where the price of a cup of coffee a day could feed and clothe an orphaned child in a faraway land only I’m not a child, nor even a stranger in a faraway land and I don’t want you to send any money (although if you REALLY want to… just kidding). I just want you continued love and support and for you to visualize a future with me in it…
Thank you. Truly, deeply, honestly… thank you.
Love, Tracy.
Wednesday, January 5, 2011
New year, new beginnings.
Hello again everyone, I’m still here… As most of you know, I went in for surgery on the 7th of September to have my spleen removed. I intended to write MUCH sooner and to keep you all informed but, I was pretty nervous prior to the surgery and since then my brain has been in a real fog. I am told it’s a common side effect of the cocktail of drugs they used to knock me out for the surgery and then to control the pain afterwards. I’d like to crack some sort of joke about drugs but that stuff just ain’t funny!
Anywho, back to the spleen. The surgeons tried to remove it laparoscopically through three small incisions about ½-1 inch long through which they inserted various tools and cameras. At some point I’m told (remember, I was higher than Sputnik!) that the spleen started to roll onto their tools after some of the “disconnections” were made. This resulted in their tools and camera being hindered and holes were poked in the spleen as a result which then caused bleeding inside. Not cool… So, the decision was made to make a much larger incision and get it out quickly. Although this was not in the plan, they had warned me this would be a very real possibility due to the size of the spleen. And speaking of spleen size, a healthy spleen should be about the size of your fist and weigh in the neighborhood of ½ a pound. Mine was around 12 inches long and weighed over 15 pounds!!! Normally it’s tucked under the left side of the diaphragm, mine started there and extended all the way down into my pelvis. The spleen is an organ that creates lymphocytes for the destruction and recycling of old red-blood cells. The spleen is also a blood reservoir and is the location where white blood cells trap organisms. Given all that it’s not hard to figure out just where two units of blood a week were going…
Well, no matter anymore as the spleen is LONG gone! It was an amazing experience (and not just because of the drugs!) and I met some amazingly talented and compassionate people along the way. People like my surgeons Dr. Tedesco and Dr. Eisenberg, and RN Austin Balk in the ICU, that dude was super cool! It also showed me just how involved and caring my hematologist Dr. Martin is. She was not involved in the surgery itself but was monitoring me throughout the day and after the surgery she insisted that I be moved from the “step-down” unit, where one nurse (sorta) watches over 4-5 patients in a large room, to the ICU where I received round the clock care from people like Austin. It’s wonderful to know that when you can’t BE in control, there are caring compassionate people who can and WILL step in on your behalf.
So where does this leave me? Well for starters I was transfused one unit of blood post-op when I was discharged on the 14th of September. Since then I received two more units on November 2nd, nearly two months later! For those of you keeping track, that’s a dramatic improvement from two a week to two in almost 8 weeks. Hallelujah!!! It has also left me with a TON of energy and a renewed commitment to get out there and LIVE! The only thing really slowing me down is the loss of muscle that resulted from so much inactivity over the course of the past three years. Wow, three years… has it REALLY been almost three years? And to think that the first specialist I saw gave me only that long to live. I’m glad that he was wrong on THAT ONE!!! Now, since having the splenectomy, Dr. Martin says that I may have in the neighborhood of 15 years. This is of course an estimate as only God knows for sure, but I’ll take it! She is hopeful, as are the rest of us, that new ways to treat Myelofibrosis can be found in that time and progress is being made all the time. Just the other day a friend sent me a link to a news article stating that a team of Canadian scientists has found a way to turn a person's skin into blood. The method uses cells from a patch of a person's skin, their new method can create enough blood for a transfusion from a four by three centimeter (1.6 by 1.2 inch) patch of adult human skin and transform it into blood that is a genetic match. With the ability to create blood for transfusion from a person's own skin, the advance means someday patients needing blood for surgery or to treat anemia could bypass the blood bank and derive the necessary supply from themselves. Those needing bone marrow transplants could be particularly aided by the breakthrough, according to John Kelton, dean of health sciences for McMaster University. "For all physicians, but especially for the patients and their families, the illness became more frustrating when we were prevented from giving a bone marrow transplant because we could not find a perfect donor match in the family or the community," Kelton said. "Dr. Bhatia's discovery could permit us to help this important group of patients." Sounds pretty damn good to me!!! Way to go Canadia, eh?
With all this I find myself once again at a crossroads, the paths before me are as varied and unknown as ever they have been. It’s time to make some decisions, serious decisions. Where do I want to go? What do I want to do? Should I go back to work, CAN I go back to work? If so, what can I do and how long can I do it? None of these questions are easy to answer, at least not for me. I don’t think I’ll be able to work as a cabinetmaker like I was before, it was just too physical and I have lost too much muscle mass to do that kind of work. There is also the question of how much can I work and keep my disability income. I’d like nothing more than to not need it but… if I can’t work a full workweek and I lost those benefits, could I get them again if I needed to? I kinda doubt it would be very easy and that would be a mess, there ARE still bills to be paid. Please don’t misunderstand me and think that I don’t want to work or that my plan is to scam the man and lay about all day at Uncle Sam’s expense. The road to recovery is far from over for me and I have a fair way to travel to get there, if I ever really even do. The splenectomy was still only a bandaid, a rather effective bandaid, but ultimately still not a cure. The search continues for a bone marrow donor match so keep telling your friends and family that haven’t yet been tested, they could save a life!!!
Most of the previous text was written back in November. I have since been rather sick with the flu and dealt with some more depression. Not a very fun way to work up to the holidays. The holidays themselves were very well except that Sarah was infected with that vile flu bug the day before Christmas. Sheesh! FINALLY we caught a break after the first of the year and now we are gearing up to make 2011 the best darn year it can be for our family. We are trying to plan an extremely long overdue honeymoon to Ireland in April, the boys have been enrolled in a local martial arts school which specializes in medieval swordsmanship and knightly virtues. I see good things in their future as Connor has attacked his lessons with fervor and Kenyon continues to mature. I think some music lessons will be in store for all the kids as well as Sarah and I, some vacations, hiking, trips to the beach and maybe some whale watching! Why this very morning I went to Hearst Elementary School to help a friend who has started a book club to get the kids there reading. I sat in front of maybe 150 kids, parents and faculty and read The Little Engine That Could, all the while thinking how fitting a mantra that was for me. Those kids will never know how much the experience meant to me, not only to be able to share a timeless classic with them but also to stop and reflect for a few moments afterward on just what that story means. There is the lesson we learn about taking the time to help those in need, like the Little Blue Engine helping the train get over the mountain to bring all those toys, dolls and food to the kids in the town there as well as the lesson that if we put our minds to something and we stick to that, or persevere, we can do great things not only for ourselves, but for one another as well.
It also felt great to do something without the expectation of payment or reward, something done just to help a friend. I have been doing some research on how best to get back into the swing of working after such a lengthy struggle with a major health issue and one of the things that I have learned is not to just try to jump back onto the bandwagon but to work back into it gradually. I found suggestions like finding places to volunteer my time and work up from there, perhaps where there is not so great a commitment as being at a time clock at 9am and trying to tough it out for 8 hours 5 days a week. I think this was a great start and I’d like to look for more things that I can do. I must admit that I was more than a little nervous at first; you KNOW how vicious children can be, especially in such large numbers! They were easily tamed with some donuts beforehand and I’m certain they were well mannered to begin with. This will go down as one of my favorite things accomplished in 2011, I can’t WAIT to see what else this year has in store for me!
Until next time, stay warm, stay healthy and spread the love!
Tracy.
Sunday, September 26, 2010
Farewell to an old friend…
As many if not most of you know, I spent a week in the hospital after having my spleen removed. It served me well for 39-1/2 years, give or take, but in the end it just had to go. Seems that it was hoarding a good amount of the blood that was being transfused into me, that’s just not nice! So, the surgeons were notified, meetings were attended, and on October 7, 2010 I “birthed” a 15 pound 12” (give or take) spleen. In a healthy adult male it should be about the size of a fist and weigh less than half a pound. As a result of this operation I can now breathe deeply, albeit with a bit of pain with those really deep breaths, and I can EAT again! I am still convalescing at home but my progress has thus far amazed the doctors. Given another 4-6 weeks and I am hopeful that I can be in the gym with a trainer and finally shed these last few pounds. In the interim however I’ll happily “walk it off” with the dogs.
Also of note, Dr. Martin remarked that I could (hopefully) look forward to another 15 years… a full three times the expectancy given me on initial diagnosis. Praise GOD!!! I’ll take it. All this also means that we can postpone the transplant for a while. In some ways it’s like Christmas early.
With all that has transpired over the course of the past few weeks my spirits have soared and my thoughts look to the long term future for the first time in a very long time. I have even thought about what I might do work-wise and my thoughts have led me to research what classes I would need to take to become an architect. I think I’d rather drive a desk than swing a hammer or carry cabinets. Perhaps this will even rekindle my love of woodworkinig as I could do it for myself and not for someone else.
I’d really like to add something deeply meaningful and inspirational, maybe even thought provoking, but I honestly just don’t have it in me. There have been fleeting thoughts of things to write about but I think the narcotic pain killers fried my brain just a bit. Maybe next month. Till then, y’all stay healthy and behave.
Tuesday, August 3, 2010
A year in the life.
I didn't used to think that God had much time for little ol Tracy. After all, what did I matter in the grand scheme of things? I suppose ...one could argue that I have been led to this place in my life to be the one to say such words as might get us all thinking again. Our culture seems to be one of everything must be hand fed to us by wiser, smarter people nowadays... But I'm not sure if I buy into all that either.
At this point in my life I have to believe in SOMETHING and I have bounced around testing other spiritual waters with my toe and nothing was of a "comfortable" temperature to me. See, I lived my life according to what I thought was right and I thought that I didn't NEED to do it for some higher power. I was/am smart enough to know what is right and what is wrong. I suppose a lot of my hesitation in turning to "God" lie in the fact that by and large the majority of people that I encountered that were "Christian" behaved in ways that were VERY un-Christian like to me, ergo why would I want to be counted among them? Having exposed myself to myriad other religious philosophies there are a host of redeeming qualities about each of them and by and large I still use the best of those parts today.
I guess I don't believe that God has a hand in everything that I do. After all, he did give me free will right? What would be the point in giving someone free will and then "guiding" their every move? For me, I think that I have to believe that as a generally "good" person, there simply HAS to be some reason for me to have something as horrible as cancer... I don't know if this is a test, an awakening, or a call to action... I honestly don't know why it happened but I suppose that when faced with death one needs to have a reason why one should die. For example: I am old and my body is just worn out. I am a soldier fighting for a good cause. I have a terminal disease and it has given me a sense of faith in a higher power so that I might find my voice and maybe help others find a sense of purpose to their lives.
Pretty deep stuff for a Monday evening eh? But I think that it came about because this is the time I am capable and willing to take it on. To open it up, dissect it, look at it from a few different points of view and formulate a well thought out reply. I hope that was conveyed.
I also received some more “political crap” emails that sort of set me off. I’m getting very tired of people passing along things that are at best disrespectful of who the President is and the tasks he faces on a daily basis. We should all know by now that no matter who sits in that chair in the oval office they simply can’t please everyone. I get that some of you are upset, that you feel like you are getting royally screwed by “the man” but seriously, does passing along an email that simply makes no sense or posting a link on your FaceBook about how he is not attending ceremonies in Arlington National Cemetery on Memorial day or going to the Boy Scout Jamboree help in any way? Does it make any of us feel better about our present situation? Be honest… I didn’t think so.
A while ago, around Memorial Day I think, I asked if anyone could name one thing that he had done that was “good” in his or her opinion. The answers I got thoroughly appalled me. No one even really tried! Those that did respond simply spouted off things that were good because he hadn’t done them or that had been shot down by the rest of the politicians in Washington. These people failed to even try to grasp what I was asking but instead used it as an opportunity to try to condemn someone they have never even met and in fact, know very little about. It honestly makes me sad that people base their opinion of someone solely on their political affiliation or what they think they are trying to do based on what the media tells them.
I think most of us need to take a step back and take a long hard look at how we treat other people, how we base our opinions of one another, and what is really important to us as a whole. For example, Republicans tell us that the government wants to take away our guns, while Democrats tell us that they want to nationalize health care. So by this rationale alone, and taking into account no other factors, how should I vote? I certainly don’t want to lose my second amendment rights but being very sick and not knowing whether or not I would be able to pay my medical bills that national health care thing sounds pretty good. Maybe I’ll just fight for my guns later, if I’m still alive… See what I mean? It’s not so easy, and it raises the question of just how much value do some people place on MY life when I can’t afford insurance and nationalized health care is not such a good idea in the opinions of some. That they don’t want to pay for someone else’s hospital bills… Well hell, maybe I DO need to fight for my right to bear arms so I can take out as many as I can before I die of cancer, but in the mean time, I think I’ll just pass along another ridiculous email slandering someone who is trying to help me because it’s the “easy way” to go about things and it makes me feel like I had my say… In reality you didn’t say a darned thing, and THAT’S the bottom line!