Breast Cancer Caregiver Guide for Spouses

The source of all life and knowledge is in man and woman, and the source of all living is in the interchange and the meeting and mingling of these two: man-life and woman-life, man-knowledge and woman-knowledge, man-being and woman-being. – D. H. Lawrence (1885-1930) English writer

I hinted at this yesterday but it has been beating on my mind all day.  When I retraced my steps over the last several months I looked back and wonder how I made it with my senses still intact. 

Let me first say that what the men go through when their wives have breast cancer is nothing compared to what their wives or mothers or daughters will experience, but I believe the life partners  (I’m mostly talking about husbands) are a critical part of the management when cancer enters a woman’s life.  There is no doubt that men get a bad rap about how we react when our loved one tells us that she has cancer in a part of her body that is such an intimate part of our physical relationship.  But aside from where it is located, we just aren’t ready for cancer period.   Even if we men were better prepared, all it takes is one bad apple to spoil the cart and our reputation as a group would be back out curbside.

I’m not saying we men are the fairer sex.  Heck no.  We definitely have a few (make that many) flaws.  That’s why we love women so much!

What I am saying is that while my wife came home with packets of information and videos, there was nothing for me.  Not a word of guidance.  I spent hours taking notes at each doctors visit, I ended up having to do lots of research and looking to other women and their spouses for what to do and more importanly what not to do.  Its harder than you think.  I don’t even think that my wife’s surgeon shook my hand the first time we met.  Mind you she is a wonderful lady and we have a great relationship, but I don’t know if the doctors know what to do when the spouse shows up.  Rightly so, they spend all the time talking to our wives.  They need tools to give us. I don’t need much.  All I needed was a one pager.  Something that said, the best thing you could do right now is hold your wife’s hand.

Well I gathered a lot of information.  Unfortunately I found some good resources after the fact, but I saved them.  I have links to most of them in the Cancer Resource Links in the right column of this blog.  So if you’ve just found this, take a look at these links specifcally for men.  Some come from friends I’ve met and others from research I’ve done:

Good Websites:

Men Against Breast Cancer

Breast Cancer for Husbands

Breast Cancer Husband

Some Real Personal Blogs:

The Moutray Chronicles

The Price of Love

Articles Every Husband or Father Should Read:

Love Her Tender

A Guide for Clueless Guys

A Supremely Kind Spouse

I hope you all find these useful in your journeys wherever you may be.

My Life With Laura Blog Book Tour & FightPink.org

If you’re going through hell, keep going.  ~Winston Churchill

Before I begin my post for today I want to thank Stacy from FightPink.org.  Stacy was kind enough to post my original three blog posts on her site in the co-survivor section of her website.  I hadn’t read them in a while and it seems like years ago since I wrote them, but I’m glad she found them and felt they were worthy of posting.  I hope someone finds them useful.

I also want to make sure anyone who reads this post to come back here on January 19th, Martin Luther King Day.  I will be hosting an interview on the Blog Tour for Chad Moutray’s book, My Life with Laura – A Love Story.  It is a love story which ends sadly when Chad and his wife lose their battle with breast cancer.  Chad is having a blog tour about his book and several of us have read it.  I encourage you to follow the different dates on his two week tour of many different blogs.  Here is a link to his schedule:

Today flew by for me, but I can say it was a full day of thinking, laughing, and eight glasses of water to fight my voice which is pretty weak right now.  I received an email that made me laugh.  The person asked me why I was posting “Celebrity Sightings” on my Cancer Blog!  Yes, my life is moving in a different direction.  Cancer still stares us in the face and will occasionally be on topic for the next several years as my wife faces her post-cancer trials and therapy.

In fact as I worked up some interview questions for Chad, I was thinking about the predicament that many men are put in when their wives discover they have breast cancer.  We have to be strong, silent, empathetic, and unselfish all at once.  Some of us have not even had practice at one of those things.  That does not even begin to talk about the tasks that we need to serve as cook, provider, chief information officer, Florence Nightengale, joe the plumber and many other things I can’t remember.  Let’s face it, men just don’t have a good rap as caregivers.  When I was faced with those many hours sitting in the waiting room, I hated being the only husband sitting in the room with a young wife.  Where were the other husbands?  Face it, the waiting room of a breast cancer clinic was no place for a man.  All those glamour and cooking magazines.  I was left to read last year’s ESPN Spring Training Preview where they picked the Detroit Tigers to win it all (boy were they wrong).  I started bringing  in more current magazines on business, sports, photography, and travel.  By the time my father-in-law made it to his first and only visit with his daughter to the doctor (5 months after her original diagnosis) , all he could tell me about was the marvelous skiing magazines they had. My wife and I could only smile.

In those hours of waiting, I did discover the bulletin board which was full of community groups to help with coping.   I wandered around the Clinic’s Cancer Resource Center  which was helpful and I met a few men and befriended a few sharing stories about our wife’s situation then asking if we knew the score from last night’s basketball game.

What I realize was missing when I was working on my questions for Chad was a primer on what to do.  I had gathered so many articles and written so many notes and resources that I put together a small guide.  I think it would be a great set of readings for husbands, so I’ve packaged them together as a reading list for our surgeons and oncologists to give to their patients and spouses.  Even though my wife has passed her surgery stage of chemo I just feel like we owe so much to those that will follow behind us.

So what’s the status with my wife?  Well she still has scars and is dealing with letting them heal.  There is always some mention of them every night.  I keep reminding her that time heals all wounds.  I hate those words.  Who said that anyway?  She has four visits to the clinic this week.  The first was to check on her suture which opened up.  Tomorrow she gets one of her monthly suppression shot to reduce the amount of estrogen that feeds the type of cancer they removed from her, then she meets the following day with her oncologist to go over her clinical trial.  The trial is called S0307 and is a bisphosphonate trial primarily for pre-menopausal women.  Bisphosphonates are a group of drugs that have strong effects on the bones and have been shown to strengthen the bones in many patients who take them. This study will compare three study drugs, ibandronate, clodronate, and zoledronic acid in breast cancer.   My wife is taking clodronate.  The study will take place for 3 years.  My wife will be taking Tamoxifen for 5 years.    She has seen some minimal side effects but we just say that it shows the treatment is doing something. I try not to make a too big deal about it as I want her to feel like it is a normal thing we are ready to deal with. 

I know this is a weird note to end this blog, but I had a great run tonight and at the end, my iPod had a congratulations message from Tiger Woods for running my fastest time yet.  This was a pleasant surprise and I can’t wait to run faster tomorrow.

Not A Breast Cancer Survivor – But A Survivor Nonetheless

In this crazy world of social media and digital technology, I’m sometimes lucky to get caught with a camera available when I run into someone who has had their 15 minutes of fame. Some more relevant than others.

One of my favorite shows is the reality TV show Survivor. I like it for the human dynamics involved. There is teamwork, strategy, ethics, and lots of luck. Much like there is in life. Many times I wonder how I’d do on a show like that. When I first watched the show, I became mortified by the decisions people made and the people that won. Finally on Survivor, they had a guy I could relate to. It wasn’t that Yul Kwon was Asian like me (or just as good looking – Note he was once one of People Magazine’s Most eligible Bachelors), but the way he played the game was great.  He was also reaised in Northern California, had an advanced professional degree and spent time in consulting.

Yul is now entering the entrepreneurial space of frozen dessert with the company Red Mango.  As I own several Ben & Jerry franchises, he and his partners came to me with a few questions and I had a business proposition to discuss as well.  Below is a photo of my wife, Yul and me (I took that photo 15 pounds ago) at his store in Palo Alto on University.  Yep, a millionaire served me some yogurt.

Sierra Exif JPEG

The Run of 118 Christmas Trees – Life is A Highway

Our 2008 Christmas Tree
Our 2008 Christmas Tree

The perfect Christmas tree? All Christmas trees are perfect!”
~ Charles N. Barnard, American author, travel writer.

 

I just got back from my 2nd run of the year.  Thanks to the reader who said they’d help remind me to get out there and “Just do It”.  (Note to self – next time you write down your resolutions, tear them up and burn em).  It definitely was the weekend to start throwing out the Christmas Tree.  I counted 118 trees on the sidewalk during my run.  We could have left it up but the weekends are getting booked up already with travel, basketball games, holidays and parties!

No Christmas tree counting is not what i do when I run, but it sure helped to make tonight’s run a little different than the more than 300 other runs I will have this year.

We had a pretty active weekend.  Since I won’t be able to attend my son’s Little League Skills Assessment this year, we went out and played catch and hit a few balls.  I love sports, but I am not one of those crazy parents (I hope I’m not) who people can’t stand at the games.  My son is so focused anyway that sometimes you can scream at him and he doesn’t flinch.  Last year he ran through my stop sign at third base when I was the third base coach.  I had a good laugh with the other parents afterward and got a lot of ribbing about having more discipline at home and wondering if he would have stopped if mom had been there instead of me.    Seriously though I have a son who has decent capability to play any sport although I’m not sure where he got the talent from.  I have no visions of grandeur though as he definitely got his small stature from his parents!

We also got out as a family to spend time at the park and get some fresh air and exercise.  My daughter called it her highlight of the weekend which made me feel good.  My wife is still limited with her stitches so she and my daughter went for a little hike to a lookout point near our home overlooking the San Francisco Bay.  In fact, one of the stitches seemed to maybe have come out too soon and she might have to go back in early this week to have it fixed.  After our family meeting at dinner tonight where we talked about our schedules and highlights for the week, my wife and I had some alone time to talk about how we are doing.  She laughed at me.  She was the one in college who was going to be a bio major and I’m the one who runs at the sight of blood.  She was quite amazed at how I was able to deal with all the tubes and procedures she had to go through when she was ill.  I told her I sucked it up, and kiddingly told her to promise to never make me go through it again.  Well this little stitch is causing some fluid to run out.  Oh my…..medic! 

She did thank me for being her rock.  I had to do a lot of research for her as she was overwhelmed and frankly quite scared to read everything online and also had selective hearing when it came to what the doctors were telling her.  Depending upon her mood, she’d only hear the good things sometimes and other times only the bad things.  She’s better now and is able to even go online and meet some of the people I met online who gave me lots of advice.  I think it is great that she is now able to converse with some of these people and join the sisterhood of survivors.

Back to normal life?  Well maybe it is with the regular TV season coming back on.  We’ll be able to have our banter about Desperate Housewives, Lost and everyone’s favorite, American Idol…

Rockin’ Down the Highway in 2009

“New Year’s Day: Now is the accepted time to make your regular annual good resolutions. Next week you can begin paving hell with them as usual.” ~Mark Twain

Okay, I’ve been a bit delayed in putting my resolutions down.  Quite frankly I’ve been adding and subtracting them over the last few days.  Tonight I had my first run on the year so it gave me a chance to really reflect and let them come out.  I also had a chance today to watch my favorite movie “Field of Dreams”.  My friends who have been in the video business dock me for life as a film critic for enjoying any movie with Kevin Costner, but the movie hits me personally on so many levels that it helped me.  It is a movie about faith, believing, and following your passions.  Seeing it again helped me finish my list of resolutions.  During the movie they play a couple of Doobie Brother’s songs.  They don’t play the one below, but it is a favorite and I thought would set a tone for me this year.

So here go my resolutions which of course fall into some neat piles of Health, Happiness and Wealth (they are the most common according to all the news I watched this year):

Health:

1.  Get more sleep!  I’ve been averaging 6 hours or less and just need to get more this year!

2. Continue to improve my cardiovascular and running. This year I ran 1126 miles and reduced my avg. miles from the pedestrian 10 minute pace down to 6 and half minutes per mile.  I was really inspired by Dara Torres the Olympic swimmer who in her 40s was able to perform at a level she did in her teens.

3. Investigate the small personal health concerns that I have and make sure that I get the answers.

Happiness:

4. Spend more time with the children.  I think the health issues this year were a small strain on them as well.  For my daughter I want to find an activity that she and I can call our own.  For my son, I want to spend more time on his social development.  This is a hard one given that both teachers told us that we need to keep doing what we are doing, but I want our children to just know that their parents love them.

5. Rebuild my one to one relationship with my wife.  With her cancer having consumed the second half of 2008, our 50-50 relationship really became a 90-10 relationship.  It exhausted me and it changed my view of my wife as more of a patient than a partner in life.  I want to make sure that we get some one on one time and rebuild the bonds that made our relationship special even before cancer moved into our lives.

6. Continue and expand on my parenting thoughts here in this blog.  I don’t want this to seem like a “how you should do it piece” or a “what are the best tips for raising a kid” piece.  I want this to be an insight for my children to someday see the dilemmas and decisions I made as they relate to them.

7. Start blogging about my other passions like photography, sports, etc.

8. Take more time for myself.  Take those vacations!

Wealth:

9. Secure our future plans.  Develop a more secure will and documentation of our assets.

10.  Tighten up random unnecessary expenses – Magazine subscriptions, luxury items, extra coffee, etc.

11. Analyze and reconfigure personal debt as needed (Refinance, close accounts, etc.). Save $5-$10 per day.

Well that is it.  Quite a bit and I must say, I’d be very very happy to accomplish all eleven.  Writing it down does put it out there and hopefully it something I will look back to.