Sunday, November 20, 2011

And Winter Came...

Sit down by the fire here for I have much to tell... As most if not all of you know it's been some time since my last update and I apologize for that. The transplant hit me pretty hard and there were a few weeks in the beginning where I wasn't really... well, THERE for lack of a better word. That time is simply not in my memory and I'll spare you the gory details. Suffice it to say I am eternally grateful to whomever invented morphine so that I could be so high as to not remember any of it. Yeah, it was THAT bad! BUT, that's all behind me now as I have not had a transfusion since shortly after the transplant was done. Instead they're now taking blood OUT of me in order to reduce the ferritin level (an intracellular protein that stores iron and releases it in a controlled fashion) in my blood from all the countless units of blood I received over the years and in spite of what amounts to “donating” a unit of blood a week my hemoglobin level has continued to rise and is now 13. The recognized level for a “healthy” man of my age is between 14 and 17. Just let that sink in for a minute, I can wait... So Tracy, what does this all mean you might ask. Well, there is no official word from any doctors as it's still VERY early on in the post transplant scene but those numbers tell me that things are progressing rapidly and in a VERY desirable direction. Those new stem cells have corkscrewed themselves into the hard bone and set up shop not only making blood but replicating themselves to such a degree that they are able to keep up with the blood coming out AND produce excess to replenish what was lost. This would be a good time for a tissue, excuse me...


HOWEVER..., (pause for effect) it's far from over and I find myself fighting yet another demon known as depression. A foul and vile affliction if ever there was one and every bit as faceless as the myelofibrosis I have all but eradicated from my body. The kind of thing one faces that has no face, no body, no corporeal entity upon which to vent my rage and disdain for it. It's just there lurking in the back of my mind and making it's presence known when I'd least like to have it around, not that there is a good time to have depression drop in for a visit mind you, but ever that seems to be it's super power. Timing. Make no mistake it knows full well how to best use this power too. But there is hope... I've started seeing a therapist again and it's working! Just as with the “cancer” I have had to seek out persons with special skills and talents to aid me in this fight and I pray ceaselessly that this war will end soon but with a favorable outcome, for me that is. I could care less if cancer and depression are made to suffer and should they be stricken from me, and all those they hold hostage from their lives, so much the better and I say “Good riddance!” All of this brings me to something that has been on my mind for the past week and a half. Please, PLEASE have patience with me. This is far from over and I fully understand that many if not all of you worry and my lapses in communication certainly don't help that but please try to remember what I have said here. There are days where getting out of bed, eating and watching TV are THE best that I can manage and understand that I'm working on it and giving my all every day. Some days I simply have more to give than others...


As the seasons change and summer has turned to fall and now winter has come let us take time to remember the things that we are thankful for. Even though I don't call as often as we all would like or even update you as often as I'D like it doesn't mean I've shut you out of my life or I'm ignoring you. And I know I should tell you all thank you more but again, please don't assume the worst. I am, and ever shall be eternally grateful for all you have done, each in your own way. I would like to take this opportunity to send a special thanks out to some very important people. These people have each done something for me that has really made a difference and although you all have in some way done something, these I feel deserve special recognition as I reflect on the past year and what they have done for me in my greatest hour of need.


My beautiful-amazing-incredible-compassionate wife, my children (including the dogs!), Frank and Sharon Farmer, Patricia Warner, Alex Beam, Rayann Heingartner, Becky Dean, Jeff and Desiree Kauffman, Joe Thompson, Dave Farmer, Brian Hinck, Amber Hamm, Kathleen Schoening, Monique Becker, Eric Jones and Erin Saul, Kristi Finney, Brad and Jamie Luegge, Keith and Jamie Hood, John and Heidi Maher and the list goes on. I'm sure I'm forgetting a good many people but these, off the top of my head, have made a tremendous difference in how I've managed to deal with what has been set before me. I honestly, HONESTLY could NOT have done this, have gone through all that I have had you all not answered the call. I am eternally grateful and would, if I could, tell you all in person if I could. Thank you... a hundred thousand times and from the highest mountain top, thank you.


May the road rise to meet you,
May the wind be always at your back,
May the sun shine warm upon your face,
The rains fall soft upon your fields and,
Until we meet again May God hold you in the palm of His hand...



Tracy.

Friday, August 12, 2011

Seattle week 15

Greetings and salutations from the Emerald City. It's been a while eh? Well let me tell you what I have been up to. Lots of healing (that's been my top priority), watching crappy reruns on TV and staying up late to see the shows I like because I don't have my trusty DVR here, a little reading (it makes me sleepy or I would read more), getting out and seeing the sights in and around Seattle, sampling the local food, watching more movies in the past three months in the theater than in the past 15 years (being here without the kids does have it's advantages). We got to visit with the kids for nearly a week when Frank and Sharon brought them up for Molly's birthday... I can't begin to tell you how much we missed them and what that meant to both Sarah and I. Thank you Frank and Sharon, we owe you big for that!

Health wise I'm doing great, physically. The numbers continue to rise and there have been no real complications except for a virus that the doctors caught onto right away and took care of it. They knew I had it in my system before the transplant and were simply waiting for it to manifest. It's good to have such knowledgeable professionals working on my behalf. Spiritually, this has certainly been a test and I can't wait to get back to my church family and feel the love and strength of God as we gather to worship Him. I strive to live a more Christ-like life and I know I could do better. I'm trying and I have faith that He knows that. Mentally... well, things could be better. I have always used this Blog/update as a tool to improve myself, and to let you all know how I feel. Sometimes it's good, sometimes not so much. This is one of those not so good times... I struggle with my sense of self, my fears of what I have and will become, how I will fit into my family either working or staying at home, what are my dreams for the future, now that just plain staying alive seems like a very real possibility. For so long life and death and my delicate walking of that fine line between the two has been all consuming. So now that the balance has been tipped in my favor, where do I redirect my thoughts? Then there are the feelings of abandonment. Feeling like some people couldn't be bothered to write or call. Most of my days whether in or out of the hospital are spent sitting. At the apartment I watch TV and try to read. I hope and wish the phone would ring or I'd find an email or a letter, but alas, only a few took the time and I greatly appreciate their efforts. Perhaps some didn't fully grasp the gravity of my situation, maybe I could have done more to make it clearer. Maybe some see this as something similar to something they went through and I should just suck it up, well that's just not me... I could have used, and still could use your support. I guess that's why I didn't write for so long, I started to feel like no one really read this or even cared. I know that may hurt some feelings but in all honesty mine have been hurt for a while now. This is some serious s#!t that I have been going through and regardless of your opinion of how you would handle it or how you think I should handle it the truth is we're not the same person. Many of you should know that I'm a very emotional person and I take things to heart. My feelings get hurt easily sometimes - times like this. And here's a little FaceBook etiquette for those utilizing that social network, one line comments on my status updates are not really very helpful. Write me an email, a snail mail letter, even a postcard or better yet, call me. Don't put this all back on me with the excuse that I could call too. I have made a few phone calls and I will not bear the brunt of this. I know that it's hard when I'm so far away and things are so incredibly scary, but leaving me to fight this on my own surely isn’t going to help. I'd rather we sat and just cried together on the phone than try to ignore the problem. It's not going away, my home is here now (well, in California not Seattle) but I'll visit, in fact I just DID a few months ago. And my house is always open to guests and I pride myself on my Irish hospitality.

We are typically at the hospital Tuesday and Friday mornings from about 8-12 but there are a host of “going home” appointments scheduled over the next two weeks. If I am busy in a procedure, Sarah will have my phone. If we are both unavailable leave a voice message and I'll call you back as soon as I can, I promise. You can also respond to this Blog post right at the bottom of the page under the post, email me a reply to the mass email I send out to notify everyone of the updates (if you want it to be private be sure not to “reply all”) send me a general email, write a letter (the post office will still deliver them for a nominal fee) or send a message via carrier pigeon. Smoke signals are not advised as we are under almost constant cloud cover here in the Emerald City, nor am I set up for telegraph or Morse code. If you really want to do something for me, that's what you can do.

Wednesday, June 1, 2011

Seattle, Week 5

Seattle, week five

Wow, has it been five weeks already? Seems as though we just got here a few days ago, and I guess that's a good thing that our time here is going by so fast. The actual transplant was delayed by some weather holding up the courier's plane. I'm just glad it made it! Medically I'm doing really well, no pain, very little nausea and just a little mucositis in my mouth. Still not as bad as some though, from the sound of things... I get a little lonely when Sarah goes back to the apartment at night and I miss my kids something fierce. All just stuff that I have to work through, just like the rest.

I have received some hats and postcards and even a surrogate gorilla to vent my frustrations on. The kids write me every week and Molly sends me drawings. Thank you all for your endless, limitless support. You all mean the world to me.

Well, that's about all I've got for this week. Not really a lot going on but waiting for the new cells to "engraft", hopefully in the next week or so. The sooner that happens the sooner I can leave and be an "outpatient" for the rest of our stay, only coming back for appointments and monitoring.

Until next week, take care of yourselves and each other.

Love, Tracy.

Wednesday, May 25, 2011

Seattle, Week Four. Alternately, The Boy's Gone Preachy

Good morning my family and my friends. I certainly hope that this finds you well, safe and dry. What a week it has been what with all the flooding along the Mississippi River then tornadoes galore just a little west, not to mention that crazy cousin of mine on the west coast ranting on about his cancer... Oh wait, that's me!

So week four was rather eventful here in Seattle. Last Thursday I started a rather aggressive chemo regimen, six days straight! Boy am I glad THAT'S over! Today is a day off with another medication to be infused over the course of the day to make final preparations for... The new marrow! As I lay here sleeping I awoke with a start, call it the "voice of God" if you like but I'm not saying that I hear voices... Anywho, I've been telling people all along how inconsequential my thanks sound to me. For things like your prayers, the little postcards and the CrAzY hats, right on up to the really big things (that we won't get into here)... I simply cannot thank each of you enough. I'm not working and barely get by as it is, so money is out. Sure I could come up with a creative way to send a postcard back, maybe gift-recycle the hats, and praying for others doesn't cost a man naught but his time and a little effort, I can do that too. But it just seems to me that a man ought to leave something BETTER than he found it, to give back more than what he has received and that maybe in doing so this world, crazy as it may seem, might just become a better place than I found it...

And then there's that "voice"... Telling me in the middle of the night that you didn't do ALL those things for me so that you'd get any "credit" or recognition for your deeds. That my debts, like those of my debtors are forgiven. Sound familiar? Yeah, it sounded familiar to me too. I think in a world where we are taught from a very early age to keep score against one another, against the world, it's easy to forget. I worked hard all my life - ALL of it, and I lost a good many job because of greedy men who had forgotten how and why they got to where they were, only that laying off some guy was a means to balance the checkbook this week, month, or quarter. I worked hard, yet I still had to file bankruptcy twice, losing a house and a truck along the way. And yet I was forgiven... I'm STILL loved... even though the "rapture" came and Tracy is STILL writing this crap... It's going to be alright.

As my second birthday fast approaches I am mindful of just what that means. I firmly believe in second chances, Lord knows I've had a few. So I'm going to do something just a little different to celebrate my second birthday, I'm going to donate it. Going to make more of it than just another day. Maybe serve soup in a homeless shelter or care for animals at the pound, maybe pick up trash at local parks or raise money for those in need... Something larger than myself.

I'm told, and I believe that all things happen for a reason, even the things we can't explain. So all of this, the bankruptcies, the hard work, even something as terrible as this cancer has happened for a reason. I don't yet fully understand what that may be, but I swear to you all now that from the MOMENT I leave this place, I intend to make the MOST of whatever life throws at me! To be THE best Tracy that I CAN be! And to forgive my debtors, eat my vegetables, putout the trash, walk the dog... And to tell Sarah every day what an INCREDIBLE woman she is.
Take care of yourselves, and take care of one another. It's what Jesus would do...

Wednesday, May 18, 2011

Seattle, week three.

Well gorilla warriors, week three is in the books. Monday saw the Hickman line placed in my chest. It was a little sore the first day and a half or so but will make things a LOT easier on me as far as blood transfusions, blood draws and medicinal infusions. It's essentially a larger, more durable version of an IV line and can stay in much longer. Anything they need to infuse me with or draw from me comes/goes through this line and I don't have to get poked anymore, or at least until I'm done.


I have spent a lot of time reflecting on the past, not by choice, it just sort of happens. All good memories thankfully, maybe my life flashing before my eyes in slow motion? It has been a long strange trip and I thank you all for joining me along the way. As I look back over the years there have been an awful lot of good times... Rest assured I look forward to making a LOT more good memories with ALL of you!!!


So, where does that put me now? Well Sarah and I had a conference with two of the doctors and the head nurse. The lead doctor basically went over a synopsis of what will transpire over the next month, and what COULD happen. Not to scare us or give us a sense of dread, more their “legal obligation” to warn us of the potential risks. I was surprised at how well I took it all in until he got to the end and said something to the effect of “All of this could also lead to you being cured.” It was at that point that I felt the gorilla wince and if he weren't metaphorical I am quite certain he would have shrunk back into the corner. That was the single best thing I have heard in three and a half years. Yes I have heard other doctors mention it but somehow now it seems so much more tangible, so close to being in my grip... Eyes on the prize I march onward undaunted by the posturing and chest thumping of that infernal gorilla in the corner. Tomorrow morning I'll be going back to the MTU for a month long stay. Chemotherapy starts tomorrow with the transplant taking place just a week later. The three weeks after that will be waiting for the new cells to “engraft” and monitoring my progress, treating the various side effects with a laundry list of medications. After that I should be allowed to come back to the apartment with daily return visits, then every other day, then every three days etc. until they deem I am healthy enough to go HOME!!!


I greatly appreciate all that you have done, each and every one of you has had a large part to play in my struggle and I have no way of ever repaying you all save one, that I continue to fight and beat this, living out the rest of my days until I am old and gray. To BE the very best Tracy that I can be each and every day. This next month will be THE hardest trial I have ever faced and I will need your support now more than at any other time. I'd like to ask you all, if you can, to send postcards from any places that you visit or from wherever you happen to be. Also, if you have any crazy hats feel free to send them my way and I'll wear them in the MTU and wherever else I happen to go and I'll have someone take photos which I'll post here of me wearing them. The crazier the better but remember, I have a BIG head (I wear a size 7-1/2). Please keep them hats, sorry Jen., no tiaras. Remember that I'll have no hair and will need them to ward off the sun as I'll be especially sensitive to it's burning rays.


Stay strong and keep the faith, your support makes this so much easier.


All my love and gratitude, Tracy.

Friday, May 13, 2011

Seattle, week two.

Hello again Gorilla Warriors, I trust this finds you all safe and dry, as spring seems to have sprung with a vengeance across the great United States. Week two here has been rather uneventful. Several dental appointments and now my choppers are squeaky clean and fillings, that I just had done, are fixed to the VA's satisfaction. On Monday I go in for the installation (like it's a light fixture or new window) of the Hickman Line or more commonly a “port”. It's essentially a semi-permanent version of an IV line and it gets installed in one of the big veins/arteries in the chest. I'm not really looking forward to it but I trust it will be better than the biopsy... Then Thursday I start the chemo, and the transplant will happen on the 26th (I believe).


The closer this all gets to becoming a reality the more anxious I become, and having a week and a half to sit around “thinking” about things doesn't really help much. I have done a lot of reflecting on the past and it seems to have focused on my childhood. Things weren't always perfect but there sure are an awful lot of really good memories there. I have been thinking a lot about people that are no longer with us too, Grandma Hagerty, Grandpa Luegge, Uncle Ray, Uncle Forrest, Uncle Harold... and a host of friends that have left me wondering what ever happened to them. I know, believe me I KNOW, that all the family members that have entered my thoughts are here with me now, wrapping their arms around me (even if such was not their way while here on earth) and comforting me, maybe even guiding my thoughts and dreams, almost letting me know they are here with me now and that regardless of the outcome everything will be ok. Yes, you read that right... “regardless of the outcome”. Honestly none of us knows for sure, except God Himself, and he has yet to tell me personally...


You know, when this all first began I asked myself (and eventually God) what I could have possibly done to deserve this. How could people commit such horrible crimes against other people, GOOD people, and nothing like this happens to them? Well, in all that reflecting over the past week I realized that deserving what has happened to me has little if anything to do with it. The things I have done throughout my life, and that I continue to do, have earned me a place in Heaven... of that I have NO doubt. So regardless of how this all plays out, what I have earned will be granted me when the time is right and not a minute before. So what do I get here, now? I get all of you wonderful people by my side, physically or emotionally connected to me each in your own way. I get people telling me how I have inspired them to work through something in their life, to find courage and strength where they thought none existed. I get people saying to me “I can't believe with all you're going through that you still find it in you to help me...” and all of that drives away the darkness, keeps the gorilla at bay for just one more day. For a long while now that is all I have asked God for, just one more day... one more chance to live my life as He intended, in the service to my fellow man - to you!


Whatever lies ahead, you'll never make it there if you don't focus on what is right in front of you. Live in the here and now and enjoy every moment of every day, even the not so good moments.



With love, Tracy.

Tuesday, May 3, 2011

Seattle:week one.

Hello from soggy Seattle. This being my first update of the transplant process there really isn't much to tell. We have both had a lot of appointments this week and there are still more to come followed by a week of pretty much nothing. For my part I generally like Seattle, though it's residents could use some driving lessons and it is in desperate need of some street widening! Other than that it a very pleasant city. Tons of fresh sea food, lots of people walking and riding bikes (this has GOT to be THE fittest city in the country!) up and down tons of hills. We have seen some of the local sights and I have a bunch of photos on my FaceBook page.

The apartment is small but serves it's purpose, it's just missing three kids (plus or minus a few neighbor kids) and two huge dogs. The furniture is spartan and functional as one would expect from your Uncle Sam. Not that I'm complaining, he IS taking very good care of me... The VA hospital here is undergoing some remodeling and expansion and as such they have valet parking for patients. That certainly makes one feel "special"! All of the doctors and nurses are very kind as well as extremely knowledgeable, perhaps a bit too much so in one Drs. Case but he IS the best that money can buy with a proven track record so I guess a little "God complex" is acceptable. He does have a sense of humor, I tested that on the first day! In short, I am well cared for, most of all by my lovely wife who is waiting on me hand and foot and has really stepped up to the challenges dealt her. I should think there is no greater test of ones marriage vows than "in sickness..." and really meaning it.

I have to tip my hat to my "support group", you all have really brought your A game. With all the well wishes, emails, FaceBook posts and even a custom set of one of a kind Tracy vs. the Gorilla prints... Well, a fella couldn't ask for a better group of people to have his back. The worst is yet to come to be certain but with you all by my side cheering me on there's no WAY I can fail!!! Please keep the prayers and good vibes coming and if you'd like to send any cards or care packages, you should have the address already. I'd ask that if you feel the need to send a care package, no cut or fresh flowers, nothing perishable, and perhaps some Best Buy or iTunes gift cards so I can buy some dvd's to watch (they would fit in a card and be less to ship anyway).

Thanks again for all that you do, I couldn't do this without you.
Eternally yours,

Tracy.

Tuesday, March 29, 2011

We can rebuild him...

Greetings and salutations from (finally!) sunny California! I have some more good news to share with you. We have some dates set for some big events coming soon. First, Sarah, the kids and I will be flying back to southwest Michigan on the 8th of April and will be staying until the 17th. Certainly not as long as we'd like but maybe longer than some are willing to put up with us... (that was a joke, yer stuck with me for a VERY long time!) The weekend of the 9-10th we'll be busy with a family thang but I am thinking of hosting some sort of a gathering on the 16th so EVERYONE that wants to can stop by for a visit. This will make it easier for us as we won't have to try to fit time with everyone into a short schedule and no one will get left out that wants to stop by and say hi. I am still working on the details but stay tuned and I'll keep you updated. If you have any suggestions as to where I might hold such a gathering please email me and I'll add it to the list and look into it. Anybody working at American Axle that can get me a good price on the Union Hall, or perhaps the Eagles or A place In Time downtown? Tak to me folks and lets make this happen! I want to see you ALL, family, friends both long standing and new, SCA folks... ALL of ya! Can anyone get us a hog and roast it? I'm honestly open to just about anything (not TOO extravagant or expensive) so throw your ideas out there and let me chew on them.


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

On Friday last the island of Japan experienced a devastating earthquake, and the earth shook violently. Many people lost their lives, catastrophic damage was done and it’s far from over for those people. My heart goes out to them… But for me, Friday meant something else entirely. It was perhaps THE single most spectacularly awesome day OF MY LIFE! And here’s why… (I strongly encourage you to grab a box of tissue and make SURE you’re sitting down, I’ll wait…)

As I was about to pull out of the drive on my way to see Leo, my infusion nurse, I received a phone call from Dr. Kao. She needed to talk to me and I told her that conveniently I would be there in about an hour. Shortly after I arrived and the infusion of pamidronate (a medication for my bones to counter the osteoporosis) she came in with her nurse. They stood on either side of me and Dr. Kao started to make some small talk but it felt somehow awkward, I would soon find out why. Next she told me that she had some news, they found a match… “WHAT?!” She repeated, “They found a match…” And then it happened, the world stopped turning and I’m quite rather certain that somehow ALL the oxygen was sucked out of the room because I couldn’t breathe. I literally burst into tears. All this waiting, thinking that as time went on the chances were less and less that a suitable donor would be found and then BAM! Seemingly out of the clear blue sky like a bolt of lightning there it was… a match…

Now many of you may recall that I had decided to put the transplant on the proverbial “back burner” until it was absolutely necessary and that’s true. The risks involved are staggering. Imagine sitting at a poker table with the Grim Reaper and your hand looks good but he has led you to believe that he has an unbeatable hand. Your ONLY option is to go all in, it’s all or nothing… It’s kinda like that. I win, I get a new lease on life. He wins, game over… Plain and simple. SO I needed to give her my answer by Tuesday and let me tell you, that was the loooooongest weekend EVER! And neither Sarah nor myself got much sleep. But in all honesty I guess I made up my mind pretty early on. I decided that if God was generous enough to gift me the gift of life not once but TWICE, what fool WOULDN’T take it?!?

I know that some of you who are very close to me have known since Friday that a match had been found. I apologize to the rest of you for taking so long to write but as you might imagine, I have had a lot to deal with over the weekend. Besides, better late then never, right? So where do we go from here? Well, I have to have some blood tests drawn in Livermore and perhaps some other tests in Palo Alto. They have to contact the donor and confirm that they want to proceed with their donation and if all goes well sometime in mid-May Sarah and I will be driving to Seattle to begin the prep work, final testing and chemo/radiation with the transplant to take place in early June. We are still going to Ireland for our twentieth anniversary and will make a trip back home (for me) to Michigan sometime in mid to late April. That’s what I know as of right now… and as usual I’ll keep you apprised of any new developments. The posts will more than likely come more frequently as things develop.

I cannot begin to thank you all enough for all your prayers and positive/healing energy but PLEASE, don’t stop now. In the weeks and months to come I’m going to need you all more than ever. This is by NO stretch of the imagination going to be fun or easy and I can’t begin to tell you how scared I am…

I love you all very dearly and I miss some of you an awful lot. Hopefully I’ll see you soon. Until then, be excellent to one another and keep praying…

Love, Tracy.

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.