Archive for August, 2011

The Ball
August 29, 2011

Today was Cancer Center Day. I was apprehensive going in. Why? For the past 3-4 weeks, I have noticed a tenderness in my right rib cage…not pain, really, but a dull ache. Sometimes I notice it a lot and other times, hardly at all. But, just when I start to convince myself that it has gone away, I make a wrong move or something and feel it again. It’s not gone. Doesn’t sound like a big deal, I know, but once you’ve experienced cancer, it seems like every little thing becomes a possible red flag.

They say that knowledge is power. They also say that ignorance is bliss. Quite frankly, right now, I’m leaning toward wishing I were a bit more ignorant. I wish I didn’t know that when Elizabeth Edwards cancer returned, it was in the form of a bone metastasis in her right rib cage. Apparently, that is a common place for breast cancer metastases. I wish I didn’t know that either, but I do. So, I have been struggling with this for weeks. I didn’t mention it to anyone but Ken, as though verbalizing it would lend credence to the fear.

During these weeks, I have vacillated between the idea that I was just being a hypochondriac and it was an insignificant thing that didn’t warrant a mention to the doctor, and the idea that my type of cancer has a high rate of recurrence and I would be remiss in not mentioning any possible symptom.

So, when I walked in this morning, I knew that we had to discuss it. I was just so tired of handling the ball, I knew I had to pass it to Dr. D. As soon as I did, I could tell that we would continue handling this ball – at least for a while. Anyone who knows me well knows that I am not a sports fan. So, it was a huge relief to me to pass the ball to his court and let him take over the ball handling. He will be scheduling a bone scan within the next week or two and it will either show something or it won’t.

For now, I am just hugely relieved to have this out of my court and into his capable hands. I feel like I can forget about it for now and just focus on our annual Labor Day at the Lake trip.  We’ll be spending a few days with Sue and Ron and just enjoying the peace and quiet of our surroundings. I’m so ready. We’ll leave Friday afternoon, stop in Sioux Falls to pick up Susan at the airport and then head to the lake. Can’t wait. Life is good.

Later.

Breathe II
August 24, 2011

I have been reminded again, recently, of just how often we are forced to play the waiting game, and how difficult it is to do that. Every day, thousands of people endure the uncertainty and fear of a possible diagnosis…an experience that forces them into a state of limbo where waiting for  the hours and days, as they drag on, makes it seem more like years.

Back in November, 2010, Rosie O’Donnell was faced with a possible breast cancer diagnosis and the tests and waiting that accompany that scenario. Her mother had died of breast cancer at the age of 39. Rosie wrote a poem to help herself cope with the waiting. In that poem she referred to those experiencing a similar wait as

“silent women in washed out robes                                                                                                                                                                                                  Blue, green, occasionally striped                                                                                                                                                                                                          All sullen faced – stoic – numb                                                                                                                                                                                                              not really there at all.”

You will recall Sara’s post from nearly two weeks ago. She had just received the results of 95% of her tests and they were good. But, there were still 5% of the results still out. The doctor told her to take a deep breath – it wouldn’t be long. She wrote a fabulous post – Breathe.

But, it wasn’t just a few days before they let her know. It was today. 12 days later. Even when you expect something to turn out OK, there is always that bit of fear in the back of your mind. There is nothing like the relief of actually hearing the words. I received an email from Matt this morning. Subject – Pathology.  Body of message – All clear. 🙂

BREATHE. Rosie echoed that sentiment in her poem, written nearly a year ago. It ended with

“over 200 thousand women                                                                                                                                                                                                                   will be told they have breast cancer this year                                                                                                                                                                                     40 thousand will die from it                                                                                                                                                                                                              many more will live on

everybody breathe                                                                                                                                                                                                                                 here we grow                                                                                                                                                                                                                                         again                                                                                                                                                                                                                                                      peace.”

Take a deep breath, tonight, Matt and Sara. You’ve got a lot of living to do.

Later.

Diversions
August 22, 2011

Sometimes the best way to take your mind off your own situation is to focus on doing something for others. Most of you know that I have been very involved with the Siouxland Race For the Cure the past couple of years. But you may not know that Ken and I are also members of the Komen Siouxland 1st Annual Breast Health Symposium committee. Ken is on the Curriculum sub-committee and I am the chair of the Publicity sub-committee. In that position, I have been working on many things to help get the word out about the Symposium which will be held on February 11, 2012 at WITCC. One that I would like to mention is the Facebook Fan page which I have created. Here is a link to it. http://www.facebook.com/home.php?#!/pages/Komen-Siouxland-Breast-Health-Symposium/121253244638480 

I would love it if you would all visit this page and, once there, click LIKE at the top. The more people who become fans of the page, the more the word will be spread. It is important that we reach as many people as possible with this valuable educational resource which will include sessions for patients, providers and caregivers. Ken’s committee has put together a fabulous roster of presenters who will be offering information on a wealth of important topics. We will also have a keynote address by a representative from national. I will share many more of the details as time goes on. But, for now, if you would visit the Facebook page and “LIKE” it, I would really appreciate it. Suggest it to your friends as well. Helping to educate people is something we can all do without having to dig into our pockets.

Just a few other tidbits…I have been taking 100% Ginseng since last Friday. No noticeable improvement yet, but it’s early. And, one week from today, I have my next follow-up at the Cancer Center. Labs, x-ray, exam, etc. Should be a good time. 🙂

Sara has a follow-up with her surgeon on Wednesday. Hoping and believing that it will be all good.

Later.

I Know…
August 16, 2011

I know that Ginseng or no ginseng is nothin. What you really want to know is the results of Sara’s remaining tests.  We do too. But, they don’t know. You’ll know as soon as we all know.

Later.

As Promised…
August 15, 2011

I know you’ve all been holding your breath, because this is really edge of your seat stuff. 🙂 Well, maybe not so much. But it is kind of interesting.

So, I met with my research advisor first thing this morning. I guess all of those weekly diaries, loaded with questions about my emotions, my lifestyle and my physical well being just weren’t enough. Before she could make the call which would tell us what kind of pills I had been popping for the past eight weeks, she had to go online and ask me questions to fill out yet another questionnaire. Seems like overkill, but, whatever works.

And, now I know. What do you think? Ginseng or Placebo? I said last night that as much as I might try to convince myself that I was feeling some better, my truthful, gut feeling was that I had been receiving the placebo. This feeling was even stronger when I woke up this morning feeling overwhelmingly fatigued before I even planted my feet on the floor. So, following the unblinding, it is official. I was on the placebo. Not a surprise.

I elected to continue on for another four weeks, this time giving the real, 100% Wisconsin Ginseng a try. Unfortunately, it is in such short supply that they had none to give me. But, the order has been placed and it should be here shortly, maybe even tomorrow. We can hope for the best.

While I was there, I also picked up the orders that I hadn’t felt like waiting around for the last time. So, the newest reminder on my fridge shows that two weeks from today, I am scheduled to return. Looks like he has ordered the full gamut again. Yet another chest x-ray, a host of labs and full exam. I get discouraged about it, but, the bottom line is, I feel blessed to have a doctor who is so diligent and so concerned that he takes no chances. Life is good.

Later.

This is it
August 14, 2011

Tomorrow is the day. Tomorrow morning at 8AM I return to the Cancer Center to be unblinded from “The Use of Wisconsin Ginseng to Improve Cancer-Related Fatigue: A Randomized, Double-Blind, Placebo-Controlled Phase III Study”.

Should be interesting. I just finished filling out page after page of questions related to fatigue, quality of life, etc. And the very last question was Do you believe that you have been taking Ginseng or a Placebo? That should be easy to answer but it isn’t as easy as you might think.

I have had situations where I would all of a sudden stop and think, this seems a little easier than it used to be. Like carrying in multiple bags of groceries, or going up the basement steps with a basket of laundry. So, is that a result of Ginseng? Just how much progress should one make in 8 weeks on Ginseng? I guess in my head I think it should be more progress than I have made. Still, there have been those moments. Overall, I am still really lacking in energy. So, I answered, placebo. We’ll know soon enough. And, then, you have the option of continuing the trial for another 4 weeks. If you do that, you get Ginseng either way, whether you’ve been on it or not. Why not? I figure I have everything to gain and nothing to lose by doing that. I’ll let you know.

Later.

Breathe …
August 12, 2011

First let me say how completely overwhelmed I’ve been by the responses to Cathy & Matt’s blog posts. Now I know that none of us walks alone. What an incredible example of the human–>human connection. I cannot thank you enough for your thoughts, prayers, and encouraging words.

Tuesday’s surgery could not have gone more smoothly. The surgeon removed a 3 x 3 centimeter specimen and sent it to pathology. Today, I received the pathology results. 95% of the tests have been completed, and they’ve all come back normal (non-cancerous). The 5% that remains unknown are still in the lab, and we will have the results early next week. The surgeon sounded very positive and encouraged me to take a deep breath and relax. So that’s what I plan to do this weekend:  Breathe.

My experience seems insignificant compared to what so many other women have gone through and are going through. But it’s still changed my perspective. I’ve been forced to slow down, take a step back, and evaluate my life. Have you ever tried to take a picture of the countryside from a moving car? Unless you have a fancy camera, it usually comes out blurry. Sometimes you have to slow down in order for your life to come into focus.

Once we get the all clear (and I know that we will), Matt and I will resume our quest to become parents. Life is such a gift, and I want to make the most of mine while I’m here.

Love to you all.

Sara

Brief Update
August 10, 2011

Yesterday was the single busiest day ever on this blog…more than 250 visits. Thanks so much for your concern and support.

What we know…

Sara is obviously more resilient than I. She went home and even went out with Matt to walk Spencer last night.

What we don’t know…

The results of the pathology report won’t be back until Friday. Again, we wait.

Later.

Do You Realize?
August 9, 2011

Today is the day we’ve been anxiously awaiting with a mix of dread and “let’s just get this over with already.” As I write this from the waiting room, Sara is currently getting some sort of wire inserted into her breast that will be used in this afternoon’s surgery. I’m not entirely sure what this is used for but I believe it helps the surgeon pinpoint the exact location of the mass that needs to be removed. I wish there was something—anything—that I could do. Anything to help make her more comfortable or less fearful. But I know all I can do is be here to hold her hand and support her. Sara’s mom, Lois, is with us as well and I know it’s been comforting for Sara even if she claims this is no big deal and she doesn’t “need an entourage.”

I’m not much of a material person but I would love a new mountain bike (a Specialized Epic Comp 29er to be exact). After all, we live in the Vail Valley and can access world-class singletrack just seconds from our front door. While we’re at it, I could also use a new snowboard. Living up here means my beloved Never Summer Legacy has gotten a lot of use and I would love to retire it and try out the Rocker/Camber technology of a new model. And most of all, we both really want a family. No doctors can tell us why we haven’t been successful in having one thus far. Our tests are all fairly normal but month after month, year after year, IUI after IUI, we’ve been let down. Our furry babies are the best (well, The Argus not so much but Spencer is the most amazing companion we could have asked for). Still, though, we want children of our own and to live the life we dreamed for ourselves when we were married over 12 years ago.

However, I want NOTHING more than to live a long, healthy life with my wife. I don’t need anything other than a healthy Sara by my side. And the events of this summer have reminded me of what’s important in life. I’d be a very happy man if, after this surgery, the pathology results come back negative and we can put it all behind us and go on with our life. That’s all I need. I don’t need another material item ever again. I just need my wife.

Last week I had the pleasure of taking my older sister, Michelle, and nephew, Tyler, to one of my favorite places in the world, Red Rocks Amphitheatre, to see one of my favorite bands in the world, The Flaming Lips. Their encore was my favorite song of theirs, “Do You Realize?” (you’ve probably gathered that I got to experience a lot of my favorite things that night).

“Do You Realize?” has always struck a chord with me, pardon the pun, but especially so now, with everything that Sara is going through:

Do you realize
That you have the most beautiful face?
Do you realize
We’re floating in space?
Do you realize
That happiness makes you cry?
Do you realize
That everyone you know someday will die?

And instead of saying all of your goodbyes
Let them know you realize that life goes fast
It’s hard to make the good things last
You realize the sun doesn’t go down
It’s just an illusion caused by the world spinning ‘round

Like all married couples, Sara and I have been through rough times and good times. And I know regardless of what happens after this surgery, the sun will continue to come up and we will continue to lean on each other. The sun doesn’t go down, “it’s just an illusion caused by the world spinning ‘round.” Life does go by so very fast.

The Flaming Lips have another song on this same album called “All We Have is Now.” Years ago I read “The Power of Now” by Eckhart Tolle and found it inspiring although I admittedly have not practiced much from it. What both Eckhart Tolle and the Flaming Lips are saying is that we should never take our time here for granted. We can’t control anything that happened in the past so why dwell on it? Why waste our time “looking forward” to something in the future? All we have is now and all we have is each other.

When Sara gets out of surgery this afternoon I plan to give her a big hug and kiss and try every single day to cherish our time together as husband and wife, as best friends. Sure we would really love to have a family but if it’s not meant to be we can’t complain. We have each other and we have a pretty great life here.

I guess what I’m getting at with all of this is that everything that has happened with my mom, and now with my wife, has made me realize once again that life is short, there are no guarantees, there is only the here and now. And whether the doctors come back and say everything is clear, or they say they’ve found something much more serious, I will make it a priority every single day to acknowledge the gift I’ve been given in Sara. Life goes fast, it’s hard to make the good things last, and we need to slow down and cherish our time together.

I can’t thank all of you enough for your positive thoughts, words, and prayers. It means the world to both of us that we have such a wonderful network of friends and family out there supporting us. We ask that you take a moment to give your loved ones an extra squeeze today and “realize” that life goes fast. We’ll continue to keep you updated as we learn more.

Matt

My Wish…
August 8, 2011

I’ve been preoccupied today, but I’m sure my preoccupation has been nothing compared to Matt and Sara’s. Sara’s surgery is tomorrow and I know all too well what that feels like. If I could just make it all go away, I would. But, I can’t. So, Matt and Sara, here is what I can do.

I can wish for you a closeness tonight that allows you to take comfort in each others presence. I can wish for you a sense of calm, that allows you to get a good night’s rest.  And, I can wish for you a symphony of prayers and well wishes holding you up tonight…and tomorrow…and throughout whatever may lie ahead.

I can add my own prayers to that. I can pray that they find no cancer. But, I can also pray that, if that is not to be, you will be given the courage and strength to accept and deal with whatever is presented to you.

I can tell you that in the midst of the greatest adversities, it is possible to find peace and growth. Whatever the outcome, this experience will leave you forever changed. You have come face to face with the frailty and uncertainty of life and you will never be the same. That’s not a bad thing.

We will be waiting to hear from you tomorrow. Until then, please know how much we understand…how much we care…and how hard we will be praying.

Later.