As many of you know, Sarah and I took a little trip Tuesday night up to Seattle. I have agonized for days on what transpired and just how to pass along the information I got there. Today my thinking is like this: I got next to nothing out of the trip. Yeah, that’s what I said, nothing. It honestly feels like the things the doctor said undid all the work that I had done in shoring up my emotions. I know that was not the purpose or what they intended, but that is how it feels. The doctor gave me numbers, and quite good ones too, of over 50% success rates and less then 13% mortality rates but… that was in a very recent study not even published yet and it dealt with generally older patients who got a much less aggressive chemo routine that they will likely not be using with me… fat lot of good that does me eh?
Then we talked with the social worker about what our stay there would be like. It won’t be fun by any stretch of the imagination. 3-4 weeks of testing to include yet ANOTHER bone marrow biopsy, 2-4 weeks in the bone marrow transplant ward of the hospital, followed by daily visits back to the hospital from an apartment where no-one can come to visit, where we cannot have pets, plants or anything that resembles a normal life. That should taper off to once a week visits and if, IF things go well I may get to come home early where they would like for us to not have the dogs. And there will still be plenty of doctor visits with Dr. Martin here in California. I suppose that is the one shining light in all this, they had really good things to say about her, and the fact that she is following me is a huge plus in all this and may help in my being able to come home early.
I knew from the start this wouldn’t be a party, but it has come full force into the forefront now. Just how much I am going to have to endure and what Sarah will be going through too. THAT hurts me more than anything else in all this, the fact that others should have to deal with it too. I have apologized before and people tell me there is no need but they all need to understand that does little to change the way I feel. I have tried to justify why this happened to ME. What did I do to deserve this? The truth is, there is nothing I did or could ever do to deserve this, and neither do any of you reading this deserve to have to read my words of pain and anguish. But it is what it is, right? I cannot see my way around this, neither over nor under it. My life is on the other side of it and if I want that life, I must go through this and claim it as my own, such that it is. Who knows, maybe I’ll just be one of the lucky ones that licks this completely and shows them all what life is really all about!
There is still no word on a donor match and in truth; they may never even find one and all of this may be for nothing. I guess we’ll just have to wait and see. I would like to thank those of you who have already signed up to be a donor. I would also ask that even if you aren’t a match for me, you stick with it and maybe you can be a match for someone else. It truly is the gift of life and we all know just how precious THAT is.
I suppose with time, I will feel better about all this. But for now, it just plain SUCKS!
Friday, January 15, 2010
Thursday, January 7, 2010
Dreams
I’d like to take some time this month to talk to you about dreams. Not the toss and turn at night kind that wake you from a dead sleep or the ones where the dog barks and wakes you up and you try desperately for an hour to go back to sleep to get back into it kind, although those ARE some pretty good ones aren’t they? No, I’m talking about the dreams that give you reason to get up in the morning on the weekend. The ones that make you go to work and deal with all those people that you can’t stand because you know that you have something to look forward to at the end of the day, or for your retirement. The ones that give you HOPE!
For too long now I have given up on my dreams. I always wanted a little farm that if nothing else could provide my family with food that was fresh and free of all the “commercial” worries. I was well on my way to seeing that dream come to fruition. Not so much anymore. But, even though I am in a different place and far removed from what I know, why must I let go of that dream all together?
I also had dreamed of being a professional furniture maker. I had built several pieces for the cabinet shops I worked for and they turned out really well. Not because I had access to big fancy powerful tools, or someone else to do the undesirable things like sanding, but because I am GOOD at it. I CAN make good quality furniture. Now the majority of my power tools are gone, sold because there isn’t room at the new house for them. But as I said, I don’t need those tools to do it. What I need is in ME! It’s a fire that burns hotter and hotter every day and there are only two choices for me. First, I can simply put out that fire and live with soggy ashes and smoldering coals to remind me of what I had dreamed of. Conversely I can choose to stoke that fire and use it as a furnace to get the things done that I want to. To make my dreams reality!
Now onto the health stuff as there is big news there. I received a phone call last night from Kathy at the Puget Sound VA facility. We discussed what days would be good for Sarah and I to come up there and talk to the doctor and tour the facility. This is really going to happen now, isn’t it? This is the first step towards finally ending this nightmare, of being disease free… one way or the other. But along with that I get all these emotions roiling inside me. Fear- this could be the first step down the path to my ultimate demise. Anxiety- this is NOT going to be an easy road to travel by ANY stretch of the imagination. Joy- things are finally moving forward, even if it’s not a journey I want to take it’s one that must be taken. At least we’re moving! Excitement- I am going to meet new people, see new things, have new experiences, and God willing I will finally be done with this. It is my sincere hope that I have learned the lessons that He has set forth for me during this trial. I have learned SO much but I wonder, could I have done more, should I have? I suppose only time will tell.
Sarah, the kids and I enjoyed a wonderful trip to Disneyland right after Christmas with Sarah’s Dad and Step-mom. They are SUCH incredibly wonderful people I cannot begin to tell you. I can honestly say that was a trip my family and I will NEVER forget! It was so wonderful to see them all so happy, especially given all that we have been through in the past two years. I realized after the first day that during my time down there I had completely forgotten about being sick, about having cancer… and I can tell you that that is far more precious than any gift I could have been given. Thank you Frank and Sharon, I love you.
Well, that’s about all I have for now. I would love to hear from any and all of you, especially the ones furthest away from me and the ones I have not spoken to in a long time. Tell me what YOUR dreams are, what fuels your inner fire! Put pen to paper, fingers to keys, or pick up the phone. It’s a whole new year overflowing with possibilities, what will YOU do with it?
Peace, Tracy.
For too long now I have given up on my dreams. I always wanted a little farm that if nothing else could provide my family with food that was fresh and free of all the “commercial” worries. I was well on my way to seeing that dream come to fruition. Not so much anymore. But, even though I am in a different place and far removed from what I know, why must I let go of that dream all together?
I also had dreamed of being a professional furniture maker. I had built several pieces for the cabinet shops I worked for and they turned out really well. Not because I had access to big fancy powerful tools, or someone else to do the undesirable things like sanding, but because I am GOOD at it. I CAN make good quality furniture. Now the majority of my power tools are gone, sold because there isn’t room at the new house for them. But as I said, I don’t need those tools to do it. What I need is in ME! It’s a fire that burns hotter and hotter every day and there are only two choices for me. First, I can simply put out that fire and live with soggy ashes and smoldering coals to remind me of what I had dreamed of. Conversely I can choose to stoke that fire and use it as a furnace to get the things done that I want to. To make my dreams reality!
Now onto the health stuff as there is big news there. I received a phone call last night from Kathy at the Puget Sound VA facility. We discussed what days would be good for Sarah and I to come up there and talk to the doctor and tour the facility. This is really going to happen now, isn’t it? This is the first step towards finally ending this nightmare, of being disease free… one way or the other. But along with that I get all these emotions roiling inside me. Fear- this could be the first step down the path to my ultimate demise. Anxiety- this is NOT going to be an easy road to travel by ANY stretch of the imagination. Joy- things are finally moving forward, even if it’s not a journey I want to take it’s one that must be taken. At least we’re moving! Excitement- I am going to meet new people, see new things, have new experiences, and God willing I will finally be done with this. It is my sincere hope that I have learned the lessons that He has set forth for me during this trial. I have learned SO much but I wonder, could I have done more, should I have? I suppose only time will tell.
Sarah, the kids and I enjoyed a wonderful trip to Disneyland right after Christmas with Sarah’s Dad and Step-mom. They are SUCH incredibly wonderful people I cannot begin to tell you. I can honestly say that was a trip my family and I will NEVER forget! It was so wonderful to see them all so happy, especially given all that we have been through in the past two years. I realized after the first day that during my time down there I had completely forgotten about being sick, about having cancer… and I can tell you that that is far more precious than any gift I could have been given. Thank you Frank and Sharon, I love you.
Well, that’s about all I have for now. I would love to hear from any and all of you, especially the ones furthest away from me and the ones I have not spoken to in a long time. Tell me what YOUR dreams are, what fuels your inner fire! Put pen to paper, fingers to keys, or pick up the phone. It’s a whole new year overflowing with possibilities, what will YOU do with it?
Peace, Tracy.
Saturday, December 19, 2009
From another's point of view.
What follows is a post on a friends Blog. Sarah went to school with this woman and her husband has cancer too. I think this will give you all a glimpse of how it affects those that are closest to someone with cancer. I thought it would be beneficial for you to see this from another perspective since all I can really talk about is what I feel, and how it affects me. Please feel free to comment afterwards with any thoughts or experiences you may have had in dealing with this, it just may help me, Clark, or our wives to cope with this. You could just make someone's day a whole lot brighter simply by letting them know they are not alone...
Be at peace,
Tracy
From my perspective. In the last year I have watched my husband get sick, lose his hair and try to muddle through the indignities of cancer and the treatment that is needed to survive.
Watching him lose the hair on his head, lose his eyebrows, eyelashes and patches of hair other places was hard. Clark said at times he felt like a mutant.
When we had to use disability passes at places where there was excessive standing like Disneyland, Clark did not want to use the pass. However in the beginning many months ago, he tired so easily it was a necessity.
This time, Clark had his hair back and some energy. We got the handicap pass but he was determined not to use it.
To me there was no sign of being sick, until...
Someone asked me about the burn marks visible on Clark's neck.
I got mad. Silly I know, but Clark had just ended several weeks of radiation. I know he had suffered enough from the indignities of cancer and now he had his hair back, but his journey with cancer was still visible.
I wanted to say it was anything but cancer. Somehow I wanted to scream what business is it of yours, instead I mumbled on how it was the effects of radiation treatment for cancer.
I think I am ready for Clark to be cancer free. I am ready to have the doctor tell Clark he is a cancer survivor.
I can only pray for all those who have suffer from the indignities of cancer because it must simply suck.
What follows is the comment I left on her Blog:
Every time I go to the VA and they check my blood pressure they tell me my heart rate is elevated... Well DUH! It's uphill all the way into the clinic I tell them... I have asked the doctor to get me the paperwork so I can get a handicap hanger for the car and use the spots up front, maybe not have to walk so far... up a hill...
It IS hard to accept that though, I know from experience. The worst part for me is that people don't SEE a person with cancer. They see a thirty something man that for all intents and purposes looks healthy as can be. I have even had doctors and nurses tell me that I can keep working or where there are jobs available. I try to be polite because I know that they cannot know what it is like to walk up a flight of stairs in your own home and have to lie down for 10-15 minutes and catch your breath, waiting for a raging pulse to slow down before you can go tuck your children into bed...
Sucks doesn't even BEGIN to come close to describing it. The worst part is being mad as hell at what has happened and not one person on my journey with cancer has been able to tell me how or why I got this. I have even been to two University level facilities where cancers are studied and not one single person, not ONE has asked me a single question about what I may have been exposed to, how I have lived my life, nothing at all to do with how I may have gotten this. I have all this rage that builds up and absolutely no outlet for it. So... I cry, like a lot! It helps a little, for a little while, but then it comes back again...
Stay strong, you and Clark too and tell him when I go to Disneyland I won't get a handicap pass either, in honor of our mutual struggle.
Peace and love,
T.
Be at peace,
Tracy
From my perspective. In the last year I have watched my husband get sick, lose his hair and try to muddle through the indignities of cancer and the treatment that is needed to survive.
Watching him lose the hair on his head, lose his eyebrows, eyelashes and patches of hair other places was hard. Clark said at times he felt like a mutant.
When we had to use disability passes at places where there was excessive standing like Disneyland, Clark did not want to use the pass. However in the beginning many months ago, he tired so easily it was a necessity.
This time, Clark had his hair back and some energy. We got the handicap pass but he was determined not to use it.
To me there was no sign of being sick, until...
Someone asked me about the burn marks visible on Clark's neck.
I got mad. Silly I know, but Clark had just ended several weeks of radiation. I know he had suffered enough from the indignities of cancer and now he had his hair back, but his journey with cancer was still visible.
I wanted to say it was anything but cancer. Somehow I wanted to scream what business is it of yours, instead I mumbled on how it was the effects of radiation treatment for cancer.
I think I am ready for Clark to be cancer free. I am ready to have the doctor tell Clark he is a cancer survivor.
I can only pray for all those who have suffer from the indignities of cancer because it must simply suck.
What follows is the comment I left on her Blog:
Every time I go to the VA and they check my blood pressure they tell me my heart rate is elevated... Well DUH! It's uphill all the way into the clinic I tell them... I have asked the doctor to get me the paperwork so I can get a handicap hanger for the car and use the spots up front, maybe not have to walk so far... up a hill...
It IS hard to accept that though, I know from experience. The worst part for me is that people don't SEE a person with cancer. They see a thirty something man that for all intents and purposes looks healthy as can be. I have even had doctors and nurses tell me that I can keep working or where there are jobs available. I try to be polite because I know that they cannot know what it is like to walk up a flight of stairs in your own home and have to lie down for 10-15 minutes and catch your breath, waiting for a raging pulse to slow down before you can go tuck your children into bed...
Sucks doesn't even BEGIN to come close to describing it. The worst part is being mad as hell at what has happened and not one person on my journey with cancer has been able to tell me how or why I got this. I have even been to two University level facilities where cancers are studied and not one single person, not ONE has asked me a single question about what I may have been exposed to, how I have lived my life, nothing at all to do with how I may have gotten this. I have all this rage that builds up and absolutely no outlet for it. So... I cry, like a lot! It helps a little, for a little while, but then it comes back again...
Stay strong, you and Clark too and tell him when I go to Disneyland I won't get a handicap pass either, in honor of our mutual struggle.
Peace and love,
T.
Tuesday, December 15, 2009
An anniversary to forget.
Boy did December ever sneak up on me this year! I realized that I was a little behind on updating you all about a week ago but I have been struggling with what to say. And then there was today… The realization hit me that it was the middle of December in 2007 that I first went to the doctor at a couple of my Aunts’ requests, or rather insistence. Boy did my life change after that fateful visit. Now here I am two years later and over half a continent away from the place I have know as home for so very many years. In the past two years I have spent way more time in doctors offices and hospitals than I would ever have imagined, received well over two hundred units of blood and made some of the most difficult decisions that I have ever had to make. But truth be told, that is all in the past. Nothing I can do can ever change what has happened. It is what it is. I have learned to look at life with a whole new perspective though. I search for the positive in all things and I wish that I could bottle that up and give it to the whole world, what a wonderful place this would be if I could do that for the world...
So, on to the nitty gritty of the past month. I have been back on the Danazol for over a month now. The tests have all been done and things are set on the VA’s end for me to proceed with the transplant. I just had a wonderful visit with the hematologist today and there is some great news. My ferritin level is right around 2700. Normal is 1000 but just about a month or so ago it was over 7000! Ferritin is a protein in the body that binds to iron, which has been in excess in my system due to the numerous transfusions. The doctor didn’t seem too excited by that but I was nearly in tears. See, in such a situation as I have found myself in over the past two years even the smallest victories are magnified a thousand fold or more. Add that to my penchant for looking for the good in all situations and that makes for one happy Tracy! I am still waiting for word from the folks in Seattle to set an appointment to go talk to them about what they have to offer by way of the transplant. What are there odds, their success rates, mortality rates and so forth. Basically, what can we expect from this and how will it all go down. I tell you true, if I could start that process tomorrow I would in a heartbeat just to be done with it. It would seem that it is the only option left to me, so let’s get on with it!
In some very closely related news I have had lots of people tell me that they have “done the swab” and are registering for the Marrow Donor Program. To those of you who have done so, I send out the warmest and most sincere, heartfelt thank you that I could ever put forth. You have no idea how my heart swells with the most absolute joy when I read those words. I know that to most people it may not seem like much but for someone in my position it serves to reinforce that even those that I have never met love me in the purest sense of the word. I salute you and I send that love right back to you. I think that is the very nature of love. You simply cannot keep it. It does you absolutely no good to put it in your pocket and it has no value unless you give it freely to another. But when you do, oh the joy it can fill you with!
Additionally I would like to leave you all with this. I have been fighting depression for some time and I am finally seeing a counselor to deal with that. I have chosen to forgo treating it with medication so as to avoid any more side effects than I already have right now. Here’s the thing with depression, those that have to deal with it many times don’t even know, especially when they are dealing with something else like, oh let’s say cancer for example… It doesn’t hurt; there are few outward signs unless you know what to look for. I encourage you to ask questions if you think that someone you know and love is dealing with this. I can tell you, it SUCKS!
Lastly, I would like to extend my warmest and most heartfelt wishes that each and every one of you has the most amazing Christmas/Hanukkah/Kwanzaa/Yule, or whatever you do celebrate this time of year that you possibly can have. Spend it with the ones you love and hold them close. Have fun with them, make memories… because you just never know.
Peace, love and happiness to all, and to all a good night!
Tracy.
So, on to the nitty gritty of the past month. I have been back on the Danazol for over a month now. The tests have all been done and things are set on the VA’s end for me to proceed with the transplant. I just had a wonderful visit with the hematologist today and there is some great news. My ferritin level is right around 2700. Normal is 1000 but just about a month or so ago it was over 7000! Ferritin is a protein in the body that binds to iron, which has been in excess in my system due to the numerous transfusions. The doctor didn’t seem too excited by that but I was nearly in tears. See, in such a situation as I have found myself in over the past two years even the smallest victories are magnified a thousand fold or more. Add that to my penchant for looking for the good in all situations and that makes for one happy Tracy! I am still waiting for word from the folks in Seattle to set an appointment to go talk to them about what they have to offer by way of the transplant. What are there odds, their success rates, mortality rates and so forth. Basically, what can we expect from this and how will it all go down. I tell you true, if I could start that process tomorrow I would in a heartbeat just to be done with it. It would seem that it is the only option left to me, so let’s get on with it!
In some very closely related news I have had lots of people tell me that they have “done the swab” and are registering for the Marrow Donor Program. To those of you who have done so, I send out the warmest and most sincere, heartfelt thank you that I could ever put forth. You have no idea how my heart swells with the most absolute joy when I read those words. I know that to most people it may not seem like much but for someone in my position it serves to reinforce that even those that I have never met love me in the purest sense of the word. I salute you and I send that love right back to you. I think that is the very nature of love. You simply cannot keep it. It does you absolutely no good to put it in your pocket and it has no value unless you give it freely to another. But when you do, oh the joy it can fill you with!
Additionally I would like to leave you all with this. I have been fighting depression for some time and I am finally seeing a counselor to deal with that. I have chosen to forgo treating it with medication so as to avoid any more side effects than I already have right now. Here’s the thing with depression, those that have to deal with it many times don’t even know, especially when they are dealing with something else like, oh let’s say cancer for example… It doesn’t hurt; there are few outward signs unless you know what to look for. I encourage you to ask questions if you think that someone you know and love is dealing with this. I can tell you, it SUCKS!
Lastly, I would like to extend my warmest and most heartfelt wishes that each and every one of you has the most amazing Christmas/Hanukkah/Kwanzaa/Yule, or whatever you do celebrate this time of year that you possibly can have. Spend it with the ones you love and hold them close. Have fun with them, make memories… because you just never know.
Peace, love and happiness to all, and to all a good night!
Tracy.
Tuesday, December 8, 2009
Valentines Day 2009
Well, I am still working on the December post. But I did dig up this little gem for a friend and I'd like to share it with you to keep you occupied until I get the next post done.
Enjoy,
Tracy.
Valentines Day 2009
Sunday, February 15, 2009
I would like to preface this with a disclaimer: Each man is an entity unto himself. As such, he should never be held to some standard that is perceivably set by his wife, girlfriend, or significant other after she has read something such as this. Ladies, please do not take this to your husband, boyfriend, or significant other and use it as an example, this is what I did for my wife and, as you will see, it took the help of a lot of people to pull it off. This is my story and each person should be allowed the opportunity to write his or her own. That being said, here is a brief account of what I, Tracy Luegge, did in honor of the love I have for my wife Sarah on Valentines Day, February 14, 2009. It must also be said that it has taken 18 years of trying for me to get to a place where this was possible, and a host of friends and family have also lent their support.
This idea was started in my head around a month ago. I truly believe that there was a higher power involved and I’ll try to explain at the appropriate time in the story…
This all started out as just dinner and a show. Not just a movie, as in whatever just happened to be playing at the local movie theater, but an honest to goodness show. Something I had researched, with her in mind, and setup in conjunction with a nice meal.
I first secured a babysitter, thanks Becky and Aunt Bonnie. I am told the kids had a surprise waiting for them that morning as well and I can’t wait to hear about their adventures. Next, while I had my sister’s attention, I inquired as to whether or not she knew of a restaurant that would still take reservations. She did and so I began looking into The Black Swan (http://www.millenniumrestaurants.com/blackswan.php?ID=25 ). This seemed perfect, an elegant restaurant in a quiet setting overlooking a lake, and they’d take a reservation. A reservation was therefore obtained for 5:15. Next I needed a show, and not just some run of the mill play. I remembered taking her to Cats at Miller Auditorium (http://www.millerauditorium.com/ ) and so I looked at their website and saw that they were showing Rain ( http://www.raintribute.com/ ) which I learned was a tribute to the Beatles. After 18 Valentines Days with Sarah, and nearly (like less then two months shy) as many years having been married to her, I have learned a thing or two. One being that she is a HUGE Beatles fan. (Side note, this would be the part where I believe a higher power was involved, Divine Intervention if you will) I also noticed that there was a showing on Valentines Day at 8pm, which would leave me plenty of time to get us to the auditorium from the restaurant after dinner.
Now for the little things that would truly make this MY treat to her. I started thinking of ways to make this a special night. We have been to the movies rather recently and in fact, did also have a nice dinner along with said trip to the movies, but… it wasn’t a proper date. It should also be noted that at just about this time, I was having some rather interesting conversations via Facebook with some friends from my high school days regarding my senior prom which didn’t really go all that well. I will spare you the gory details, but it did lend a certain flare to my creative process in preparing for this special evening. I should also then say thanks to Mena and Ame for helping me work through those memories and turning something bad into something spectacular, so thanks ladies, I owe ya one. Bearing that in mind, I thought of setting this up as a genuine bona fide date. Here's what I mean by that. I made some calls to a couple of friends and set it up like this, I would leave the house and go to their house to “get ready” and so thanks are in order to the Kauffman’s, Jeff and Desiree (she plays another important part in the story in a bit). Afterwards I would proceed to “her house” (in reality just as much my own as hers as we live here together, but for the sake of the “date”, we’ll pretend) and pick her up at a predetermined time. This also gave her something else she likes, quiet time… A very precious commodity in our house! I also consulted my fashion adviser, Erin who is perhaps Sarah’s oldest and dearest friend to ask what I should tell her to wear for the occasion. Oh yeah, did I forget to mention that all of the details were a complete surprise to her? All I told Sarah was "I'll pick you up at 4:30 for dinner and a show." No specific details were divulged. Well, Erin knows Sarah better than I do and knows fashion, which is completely alien to me (I still have a hard time coordinating my belt with my shoes!). So I knew I was in good hands and the advice was spot on, thanks Erin, you’re swell. I owe you one too, probably more.
Along the way, I also planned a few other stops. I stopped at the local florist several days before and ordered a corsage and matching boutonnière. I picked them up on the way to get ready and they were lovely, thanks Ridgeway Floral (http://www.ridgewayfloral.com/ ). I then needed a card and some sweets so a quick stop at Kirlin’s Hallmark (http://www.kirlins.com/index.html ) was in order. So with the final piece of the puzzle in hand, I was all set. Now to just put the wheels into motion.
I arrived at the Kauffman’s house around 3:30 with my suit, the card and candy, and the flowers all in hand. Got ready and Desiree helped pin the boutonnière onto the lapel of my coat, my hands were way too shaky for such a delicate operation! I actually had butterflies in the pit of my stomach! After I had done all I could to make myself presentable, I drove back to the house, gifts in hand, and rang the doorbell. It must also be said that Desiree followed me home with camera in hand to snap a few photos of the occasion, thanks again Des. Sarah answered the door in her brand spanking new black dress with white polka dots and I must say, it does a man good to see his wife dressed up for a night out on the town. There are words to describe just how beautiful she was, but that would take a lot of typing. Suffice it to say, she nearly took my breath away! Des and I came in and I delivered the swag. I think she was impressed, but there was more in store. After a few quick photos, we were off.
We arrived just a few minutes late for our reservation but the restaurant was magnificent. A lovely setting both inside and out. Valet parking (an option I did not avail myself of), a coat check (a first for me) and a staff that is second to none. The food was exquisite, from the salads to the dessert. After dining, we retrieved our coats and were off to the show. I still hadn't told her what we were going to see but once inside the auditorium, we walked past a souvenir table and she saw the goods. The smile on her precious face was reward enough for me and she hadn’t even heard them play yet! I picked up a program and a rose from another vendor and we were off to our seats. Shortly after, the show began and all I could do was watch her as she enjoyed the show. She was smiling from ear to ear and singing right along with the band. As for myself, I also enjoyed the show and even got a little choked up when they sang Yesterday. It seems as though yesterday, all MY troubles seemed so far away, but for me, love is still an easy game to play… if you are truly, deeply, and unconditionally in love.
After the show was over, I stood in the lobby waiting for her to use the facilities and a younger couple (I guessed college age) strolled by and the fellow says to me “I like your style”. I thought it a bit odd, but thanked him nonetheless. A few minutes later, after she was done and we were outside walking to the car we passed them again and I heard this fellow remark to his date “This guy knows how to do it right!” Buddy, if only you knew, if only you knew…
So, thanks to all my friends and family without whom, much of this would not have been possible. You’re the greatest and I am blessed to have you all in my life. Most importantly, I am blessed to have Sarah in my life. I love you baby, Happy Valentines Day…
Enjoy,
Tracy.
Valentines Day 2009
Sunday, February 15, 2009
I would like to preface this with a disclaimer: Each man is an entity unto himself. As such, he should never be held to some standard that is perceivably set by his wife, girlfriend, or significant other after she has read something such as this. Ladies, please do not take this to your husband, boyfriend, or significant other and use it as an example, this is what I did for my wife and, as you will see, it took the help of a lot of people to pull it off. This is my story and each person should be allowed the opportunity to write his or her own. That being said, here is a brief account of what I, Tracy Luegge, did in honor of the love I have for my wife Sarah on Valentines Day, February 14, 2009. It must also be said that it has taken 18 years of trying for me to get to a place where this was possible, and a host of friends and family have also lent their support.
This idea was started in my head around a month ago. I truly believe that there was a higher power involved and I’ll try to explain at the appropriate time in the story…
This all started out as just dinner and a show. Not just a movie, as in whatever just happened to be playing at the local movie theater, but an honest to goodness show. Something I had researched, with her in mind, and setup in conjunction with a nice meal.
I first secured a babysitter, thanks Becky and Aunt Bonnie. I am told the kids had a surprise waiting for them that morning as well and I can’t wait to hear about their adventures. Next, while I had my sister’s attention, I inquired as to whether or not she knew of a restaurant that would still take reservations. She did and so I began looking into The Black Swan (http://www.millenniumrestaurants.com/blackswan.php?ID=25 ). This seemed perfect, an elegant restaurant in a quiet setting overlooking a lake, and they’d take a reservation. A reservation was therefore obtained for 5:15. Next I needed a show, and not just some run of the mill play. I remembered taking her to Cats at Miller Auditorium (http://www.millerauditorium.com/ ) and so I looked at their website and saw that they were showing Rain ( http://www.raintribute.com/ ) which I learned was a tribute to the Beatles. After 18 Valentines Days with Sarah, and nearly (like less then two months shy) as many years having been married to her, I have learned a thing or two. One being that she is a HUGE Beatles fan. (Side note, this would be the part where I believe a higher power was involved, Divine Intervention if you will) I also noticed that there was a showing on Valentines Day at 8pm, which would leave me plenty of time to get us to the auditorium from the restaurant after dinner.
Now for the little things that would truly make this MY treat to her. I started thinking of ways to make this a special night. We have been to the movies rather recently and in fact, did also have a nice dinner along with said trip to the movies, but… it wasn’t a proper date. It should also be noted that at just about this time, I was having some rather interesting conversations via Facebook with some friends from my high school days regarding my senior prom which didn’t really go all that well. I will spare you the gory details, but it did lend a certain flare to my creative process in preparing for this special evening. I should also then say thanks to Mena and Ame for helping me work through those memories and turning something bad into something spectacular, so thanks ladies, I owe ya one. Bearing that in mind, I thought of setting this up as a genuine bona fide date. Here's what I mean by that. I made some calls to a couple of friends and set it up like this, I would leave the house and go to their house to “get ready” and so thanks are in order to the Kauffman’s, Jeff and Desiree (she plays another important part in the story in a bit). Afterwards I would proceed to “her house” (in reality just as much my own as hers as we live here together, but for the sake of the “date”, we’ll pretend) and pick her up at a predetermined time. This also gave her something else she likes, quiet time… A very precious commodity in our house! I also consulted my fashion adviser, Erin who is perhaps Sarah’s oldest and dearest friend to ask what I should tell her to wear for the occasion. Oh yeah, did I forget to mention that all of the details were a complete surprise to her? All I told Sarah was "I'll pick you up at 4:30 for dinner and a show." No specific details were divulged. Well, Erin knows Sarah better than I do and knows fashion, which is completely alien to me (I still have a hard time coordinating my belt with my shoes!). So I knew I was in good hands and the advice was spot on, thanks Erin, you’re swell. I owe you one too, probably more.
Along the way, I also planned a few other stops. I stopped at the local florist several days before and ordered a corsage and matching boutonnière. I picked them up on the way to get ready and they were lovely, thanks Ridgeway Floral (http://www.ridgewayfloral.com/ ). I then needed a card and some sweets so a quick stop at Kirlin’s Hallmark (http://www.kirlins.com/index.html ) was in order. So with the final piece of the puzzle in hand, I was all set. Now to just put the wheels into motion.
I arrived at the Kauffman’s house around 3:30 with my suit, the card and candy, and the flowers all in hand. Got ready and Desiree helped pin the boutonnière onto the lapel of my coat, my hands were way too shaky for such a delicate operation! I actually had butterflies in the pit of my stomach! After I had done all I could to make myself presentable, I drove back to the house, gifts in hand, and rang the doorbell. It must also be said that Desiree followed me home with camera in hand to snap a few photos of the occasion, thanks again Des. Sarah answered the door in her brand spanking new black dress with white polka dots and I must say, it does a man good to see his wife dressed up for a night out on the town. There are words to describe just how beautiful she was, but that would take a lot of typing. Suffice it to say, she nearly took my breath away! Des and I came in and I delivered the swag. I think she was impressed, but there was more in store. After a few quick photos, we were off.
We arrived just a few minutes late for our reservation but the restaurant was magnificent. A lovely setting both inside and out. Valet parking (an option I did not avail myself of), a coat check (a first for me) and a staff that is second to none. The food was exquisite, from the salads to the dessert. After dining, we retrieved our coats and were off to the show. I still hadn't told her what we were going to see but once inside the auditorium, we walked past a souvenir table and she saw the goods. The smile on her precious face was reward enough for me and she hadn’t even heard them play yet! I picked up a program and a rose from another vendor and we were off to our seats. Shortly after, the show began and all I could do was watch her as she enjoyed the show. She was smiling from ear to ear and singing right along with the band. As for myself, I also enjoyed the show and even got a little choked up when they sang Yesterday. It seems as though yesterday, all MY troubles seemed so far away, but for me, love is still an easy game to play… if you are truly, deeply, and unconditionally in love.
After the show was over, I stood in the lobby waiting for her to use the facilities and a younger couple (I guessed college age) strolled by and the fellow says to me “I like your style”. I thought it a bit odd, but thanked him nonetheless. A few minutes later, after she was done and we were outside walking to the car we passed them again and I heard this fellow remark to his date “This guy knows how to do it right!” Buddy, if only you knew, if only you knew…
So, thanks to all my friends and family without whom, much of this would not have been possible. You’re the greatest and I am blessed to have you all in my life. Most importantly, I am blessed to have Sarah in my life. I love you baby, Happy Valentines Day…
Monday, November 9, 2009
A Fresh Start
Well, quite a few things of note have happened in just a couple of weeks since the last update. I thought it prudent to share with all of you so as to keep you apprised of my situation and in an effort to keep these updates a little shorter. Here goes.
First, I had some really deep and meaningful talks, the kind of talks that really set you back on your heels and make you take a hard look at your life. Who you are, where you’ve been and just where you are going. I’d like to start with the “where I have been” part. I used to be a very angry person and I know some of you could see this and many of you had to deal with it. Still others I’d be willing to bet never would have guessed. Point is, I can see the truth of it and I mean to continue to change that. It’s simply NOT who I want to be. I have also had a pretty negative attitude about life in general as of late and I mean to change that as well. It simply won’t do if I intend to see myself through this thing called cancer. I need to get positive and stay positive throughout this trial if I am to be successful.
Now, onto where I am going. I am going to heal myself by whatever means necessary! It simply won’t do to sit around waiting until the transplant is my only remaining option to stay alive. It IS my only option for life, period! I had some interesting conversations with my doctors over the course of the past couple of weeks as well and what that led to is this; if I were to try the last remaining medication and just try to deal with its side effects, with the ongoing transfusions my body would continue to build up iron and eventually vital organs would begin to fail. At this point I would likely not BE healthy enough for the transplant so that leaves me with just trying to maintain my “quality of life” or as good as they can give me. Not cool… Or… I can go to Seattle, to the BEST facility in the United States for Bone Marrow Transplants, and get the transplant done and have a chance (a much better chance than I was initially given at the Mayo Clinic) at LIFE. A fresh start, a new beginning. So my friends and family, I am going to take that chance and be rid of this crap in me once and for all, cause DAMNIT, I WANNA LIVE!!! Nuff said.
As for who I am, I honestly can’t say right now. I am not even sure that I know or that any of us really ever does know who we are. But I do know who I’d like the world to see when they look at me, and I aim to get myself to that point one way or another. I can see that I am here, now, in California for several reasons. One, this is where I can get the absolute BEST care to treat my disease. My “team” of doctors has been working very hard to get things pointed in the right direction for that to happen. Sure, we have hit some snags along the way, but they are willing to listen to what I have to say and what I wish to have done (good thing for them!). After a battery of tests to ensure that I am healthy enough for the transplant, which culminated in yet another bone marrow biopsy, things look like they are right on track so far. I’d also like to tell you about that biopsy, I have had this procedure done twice in the past two years and each time with less than a perfect outcome. The first time was in a hematologist’s office with only a local sedative while he tried to push the tools through my bone, and it hurt like HELL! The second time was at the Mayo Clinic, and they offered me the option of being out cold for the procedure and I gladly accepted. Slightly better results except that I still had a lot of difficulty walking for the next several days, something I also experienced with the first one. Now here I am in California a little over a year later and I was having it done again. This time however I made my voice heard and I wanted to know why it needed to be done when nothing had changed with regards to my health, and if it was going to be done it would have to be done on my terms. I saw a friend of mine who is a hypnotherapist the night before and got some really good pointers as well as some hypnotic “suggestions” that helped tremendously. Another thing that helped was having a compassionate doctor. I lay on my side on the table with Sarah facing me in a chair and put some REALLY heavy metal music on my iPod and was just breathing, listening to my tunes, and reminding myself to relax while I told myself that I was not going to feel pain. The doctor initially kept telling me what was going on but I just kept turning up the volume on my iPod until I couldn’t hear anything but the music. She had Sarah watch for my reactions to what she was doing and when it got to be too much she would slow down or stop and take a break. She was genuinely concerned and took the time to make this the best experience I have ever had, medically speaking of course. I kid you not when I tell you that I was only a little sore after and have been able to walk since right after the procedure. I feel REALLY GOOD about where I am and who is looking after me. I strongly encourage you all to make sure that your voice is heard by your doctor and that if you are for any reason uncomfortable with that communication, by all means, GET ANOTHER DOCTOR!!! You ALWAYS have other options, always. It’s up to you to exercise them.
Another reason for my being here in California has to do with my search for my spiritual path. It has been a long and winding road but I can finally see an end to it, of sorts. I know that it will still require a lot of work but I also know that I am in the right place to do that work. Sure an’ the Lord has put me here, now, to put all parts of me right. My physical being, my mental being, and my spiritual being. I may not see where MY path is, but I am on the path that will lead me there. Now stand aside, I’ve work to do!
Brightest blessings to you one and all, and may the path ahead of you be clear and have a spectacular view.
Love,
Tracy
First, I had some really deep and meaningful talks, the kind of talks that really set you back on your heels and make you take a hard look at your life. Who you are, where you’ve been and just where you are going. I’d like to start with the “where I have been” part. I used to be a very angry person and I know some of you could see this and many of you had to deal with it. Still others I’d be willing to bet never would have guessed. Point is, I can see the truth of it and I mean to continue to change that. It’s simply NOT who I want to be. I have also had a pretty negative attitude about life in general as of late and I mean to change that as well. It simply won’t do if I intend to see myself through this thing called cancer. I need to get positive and stay positive throughout this trial if I am to be successful.
Now, onto where I am going. I am going to heal myself by whatever means necessary! It simply won’t do to sit around waiting until the transplant is my only remaining option to stay alive. It IS my only option for life, period! I had some interesting conversations with my doctors over the course of the past couple of weeks as well and what that led to is this; if I were to try the last remaining medication and just try to deal with its side effects, with the ongoing transfusions my body would continue to build up iron and eventually vital organs would begin to fail. At this point I would likely not BE healthy enough for the transplant so that leaves me with just trying to maintain my “quality of life” or as good as they can give me. Not cool… Or… I can go to Seattle, to the BEST facility in the United States for Bone Marrow Transplants, and get the transplant done and have a chance (a much better chance than I was initially given at the Mayo Clinic) at LIFE. A fresh start, a new beginning. So my friends and family, I am going to take that chance and be rid of this crap in me once and for all, cause DAMNIT, I WANNA LIVE!!! Nuff said.
As for who I am, I honestly can’t say right now. I am not even sure that I know or that any of us really ever does know who we are. But I do know who I’d like the world to see when they look at me, and I aim to get myself to that point one way or another. I can see that I am here, now, in California for several reasons. One, this is where I can get the absolute BEST care to treat my disease. My “team” of doctors has been working very hard to get things pointed in the right direction for that to happen. Sure, we have hit some snags along the way, but they are willing to listen to what I have to say and what I wish to have done (good thing for them!). After a battery of tests to ensure that I am healthy enough for the transplant, which culminated in yet another bone marrow biopsy, things look like they are right on track so far. I’d also like to tell you about that biopsy, I have had this procedure done twice in the past two years and each time with less than a perfect outcome. The first time was in a hematologist’s office with only a local sedative while he tried to push the tools through my bone, and it hurt like HELL! The second time was at the Mayo Clinic, and they offered me the option of being out cold for the procedure and I gladly accepted. Slightly better results except that I still had a lot of difficulty walking for the next several days, something I also experienced with the first one. Now here I am in California a little over a year later and I was having it done again. This time however I made my voice heard and I wanted to know why it needed to be done when nothing had changed with regards to my health, and if it was going to be done it would have to be done on my terms. I saw a friend of mine who is a hypnotherapist the night before and got some really good pointers as well as some hypnotic “suggestions” that helped tremendously. Another thing that helped was having a compassionate doctor. I lay on my side on the table with Sarah facing me in a chair and put some REALLY heavy metal music on my iPod and was just breathing, listening to my tunes, and reminding myself to relax while I told myself that I was not going to feel pain. The doctor initially kept telling me what was going on but I just kept turning up the volume on my iPod until I couldn’t hear anything but the music. She had Sarah watch for my reactions to what she was doing and when it got to be too much she would slow down or stop and take a break. She was genuinely concerned and took the time to make this the best experience I have ever had, medically speaking of course. I kid you not when I tell you that I was only a little sore after and have been able to walk since right after the procedure. I feel REALLY GOOD about where I am and who is looking after me. I strongly encourage you all to make sure that your voice is heard by your doctor and that if you are for any reason uncomfortable with that communication, by all means, GET ANOTHER DOCTOR!!! You ALWAYS have other options, always. It’s up to you to exercise them.
Another reason for my being here in California has to do with my search for my spiritual path. It has been a long and winding road but I can finally see an end to it, of sorts. I know that it will still require a lot of work but I also know that I am in the right place to do that work. Sure an’ the Lord has put me here, now, to put all parts of me right. My physical being, my mental being, and my spiritual being. I may not see where MY path is, but I am on the path that will lead me there. Now stand aside, I’ve work to do!
Brightest blessings to you one and all, and may the path ahead of you be clear and have a spectacular view.
Love,
Tracy
Tuesday, October 27, 2009
Another step along the path…
There are so many things that I want to say, that I HAVE wanted to say, but I don’t know where to begin… Let me start with the most recent things and try to work my way back. I went to see the Hematologist today and I guess it went well. That is to say, I got my point across that I want to be 100% involved in what is going on with my “treatment” and that I don’t appreciate decisions being made for me or assumptions made on my behalf. That’s about the best thing that came from today’s appointment. Apparently I am now dealing with two or more doctors, which I suppose is good in that I have a “team” working on my case, but I need to know that they are communicating well with each other AND with me. The ME part is key, at least from my perspective.
The other thing that I got from today’s appointment is this; I can certainly try Thalidomide but the fact is that it won’t really change anything, only prolong the inevitable and in the process there is a very real possibility that irreparable damage can be done to a good many vital organs that can neither be reversed nor prevented as the disease will continue along it’s path. The ONLY possible (that word causes some trepidation) cure for Myelofibrosis is a Bone Marrow Transplant, period. If I choose to try the meds and put the transplant off until later and the organs begin to fail, then the x-plant will not be an option. If I choose to forego the x-plant altogether, the disease will eventually run it’s course and I don’t think I need to tell you where THAT leaves me.
So, why not just man up and go with the x-plant? I’ll tell you why… There is a very real chance that the procedure itself can kill me. There is also a very real chance that I could go through all this and it just plain won’t work. Also, there will be drugs involved that are so toxic that if they are spilled in the hospital a HAZMAT team is called in to clean up the spill. They want to put this crap inside my body to “prep” it for the new marrow… Not a pleasant thought in my mind and I would be lying if I said I was not scared. I am scared as HELL! I want no part of any of this, I just want it to go away, but it won’t. At least not on it’s own. I could really use some advice here, your opinions, what you think, what would you do. This is some pretty important stuff here and obviously NOT a decision to be taken lightly.
This is all contingent on them even FINDING a suitable donor. They even discussed using the kids… I just don’t know if I could even ask them to go through this. Haven’t they gone through enough already? Many of you have asked me what you can do to see if you are a match. All I can tell you is to go here: http://www.marrow.org/JOIN/index.html and follow the steps to see if you are a match. Be advised that this will put you in a National Registry and you may very well be called to give to someone else, whether or not you are a match for me. You can donate multiple times; YOUR marrow will grow back, unlike SOME people… You can always decline later if you like and the process to see if you are a match is, I believe, a simple swab of the inside of your cheek. The donation process is quite another thing. I imagine it would be something very similar to my bone marrow biopsies where they “tap” into your pelvic bone and draw out what they need. I can assure you that you WILL be sore for several days afterwards… Because of this, and my nature in general, I cannot ask you to donate. I will just leave it up to you each as individuals to make the decision yourselves. If you don’t, I will still love you anyway… nothing can ever change that.
I have to meet with the VA psychologists on Friday and also a caseworker to make sure I have the proper mind set for this and also a good support system. IF I decide to go through with this Sarah and I would basically be moving to Seattle for several months (up to six I think) and we have the kids, the dogs… Then there is the thought of what happens if things go horribly bad and I simply don’t come back? Sorry… I didn’t intend to let this go “there” but I guess it’s sort of unavoidable at this point. Time to face reality. Time to decide where I want to be buried, IF I want to be buried or cremated, what kind of beer will be served at the wake… I have tried all throughout to remain as positive as possible but this is simply wearing down my resolve, my will to keep on fighting. I honestly don’t know how much more I can take… what reserves I have left in me. I have not done a whole lot of anything except think of the “what-ifs” for the past month and I don’t like any of them to be quite honest. And I have finally gotten mad about the whole thing, as in why me? What did I do to deserve this? How can the Osama Bin Laden’s and the Jeffery Dahmer’s and the Charles Manson’s just keep on living and I have to get cancer. And not just your run of the mill cancer but THIS! Please understand that I certainly don’t mean to make light of cancer at all, in any way. I’d like to think that I have been a relatively good person throughout my life. Sure I have made mistakes but I think I have already paid for them. I CERTAINLY didn’t cause thousands of deaths or start a war or eat anybody… SO WHY?!?!? I guess I am just supposed to accept that some things just are, that there is no explanation… I don’t like it but then again, I don’t like taxes and yet… ya still gotta pay…
Well, there were other things that I wanted to talk about but I guess I had a lot to get off my chest about that one thing. There are some pretty fun things that we did this month too but maybe I’ll save that for another update.
Until next month, may your Jack-O-Lanterns shine bright, your candy basket’s be full, and your car avoid any eggs this Halloween.
All my love, Tracy
The other thing that I got from today’s appointment is this; I can certainly try Thalidomide but the fact is that it won’t really change anything, only prolong the inevitable and in the process there is a very real possibility that irreparable damage can be done to a good many vital organs that can neither be reversed nor prevented as the disease will continue along it’s path. The ONLY possible (that word causes some trepidation) cure for Myelofibrosis is a Bone Marrow Transplant, period. If I choose to try the meds and put the transplant off until later and the organs begin to fail, then the x-plant will not be an option. If I choose to forego the x-plant altogether, the disease will eventually run it’s course and I don’t think I need to tell you where THAT leaves me.
So, why not just man up and go with the x-plant? I’ll tell you why… There is a very real chance that the procedure itself can kill me. There is also a very real chance that I could go through all this and it just plain won’t work. Also, there will be drugs involved that are so toxic that if they are spilled in the hospital a HAZMAT team is called in to clean up the spill. They want to put this crap inside my body to “prep” it for the new marrow… Not a pleasant thought in my mind and I would be lying if I said I was not scared. I am scared as HELL! I want no part of any of this, I just want it to go away, but it won’t. At least not on it’s own. I could really use some advice here, your opinions, what you think, what would you do. This is some pretty important stuff here and obviously NOT a decision to be taken lightly.
This is all contingent on them even FINDING a suitable donor. They even discussed using the kids… I just don’t know if I could even ask them to go through this. Haven’t they gone through enough already? Many of you have asked me what you can do to see if you are a match. All I can tell you is to go here: http://www.marrow.org/JOIN/index.html and follow the steps to see if you are a match. Be advised that this will put you in a National Registry and you may very well be called to give to someone else, whether or not you are a match for me. You can donate multiple times; YOUR marrow will grow back, unlike SOME people… You can always decline later if you like and the process to see if you are a match is, I believe, a simple swab of the inside of your cheek. The donation process is quite another thing. I imagine it would be something very similar to my bone marrow biopsies where they “tap” into your pelvic bone and draw out what they need. I can assure you that you WILL be sore for several days afterwards… Because of this, and my nature in general, I cannot ask you to donate. I will just leave it up to you each as individuals to make the decision yourselves. If you don’t, I will still love you anyway… nothing can ever change that.
I have to meet with the VA psychologists on Friday and also a caseworker to make sure I have the proper mind set for this and also a good support system. IF I decide to go through with this Sarah and I would basically be moving to Seattle for several months (up to six I think) and we have the kids, the dogs… Then there is the thought of what happens if things go horribly bad and I simply don’t come back? Sorry… I didn’t intend to let this go “there” but I guess it’s sort of unavoidable at this point. Time to face reality. Time to decide where I want to be buried, IF I want to be buried or cremated, what kind of beer will be served at the wake… I have tried all throughout to remain as positive as possible but this is simply wearing down my resolve, my will to keep on fighting. I honestly don’t know how much more I can take… what reserves I have left in me. I have not done a whole lot of anything except think of the “what-ifs” for the past month and I don’t like any of them to be quite honest. And I have finally gotten mad about the whole thing, as in why me? What did I do to deserve this? How can the Osama Bin Laden’s and the Jeffery Dahmer’s and the Charles Manson’s just keep on living and I have to get cancer. And not just your run of the mill cancer but THIS! Please understand that I certainly don’t mean to make light of cancer at all, in any way. I’d like to think that I have been a relatively good person throughout my life. Sure I have made mistakes but I think I have already paid for them. I CERTAINLY didn’t cause thousands of deaths or start a war or eat anybody… SO WHY?!?!? I guess I am just supposed to accept that some things just are, that there is no explanation… I don’t like it but then again, I don’t like taxes and yet… ya still gotta pay…
Well, there were other things that I wanted to talk about but I guess I had a lot to get off my chest about that one thing. There are some pretty fun things that we did this month too but maybe I’ll save that for another update.
Until next month, may your Jack-O-Lanterns shine bright, your candy basket’s be full, and your car avoid any eggs this Halloween.
All my love, Tracy
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