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,

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,

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!


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.


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 ( ). 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 ( ) and so I looked at their website and saw that they were showing Rain ( ) 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 ( ). I then needed a card and some sweets so a quick stop at Kirlin’s Hallmark ( ) 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…