Telling people about your cancer (TMI) – A Loving Fight

“Save your energy and emotions and let me be your voice.  People can be frustrating, but they mean well.”

My wife and I need to develop a communication plan. First she is getting hit with lots of questions from all the people she has told and secondly,  she is getting inundated with those three major questions which are slightly uncomfortable: 1) Are you going to have a mastectomy or lumpectomy?  2) Are you going to get reconstruction.  3) What size do you think you’ll get?

Hey people?  She’s got cancer?  How about waiting to see?  I know we all have a curiosity factor, but come on!  My wife has been pretty good about this, but our communication strategy has broken down and she doesn’t know how to stop it.  So from now on she is just going to tell people that she is waiting to see what the doctor says.  Well that is partly our fault.  We don’t need to tell everyone.  We don’t want pity.  We want something else.  Well what is that?

Really, the key to all of this is to create a vision. 

We’ve broken it down to: 1) Immediate Family, 2) related family, 3) close friends, 4) School and work social circles, and 5) casual friends.  Only 1, 2, and 3 we are telling about the surgery for sure.  Only #1 needs to know the details of scope and such.

As I mentioned, we have a vision and my wife have discovered this vision as we’ve met people that have had cancer and are helping us.  Every time we find someone has had cancer, we are shocked.  We say, “Wow, you look great!  We never knew!  When did you have it?”  Every time we do that there is a joy in their face!  They know that we are genuinely surprised and are happy that they are healthy and doing well.  It is so much better than the sorrowful look of having to tell people you have cancer as they look for away to ask if they can help and then clumsily ask too many questions.

So we are working on our cancer epitaph.  What do we want people to say to us when we kick this thing.  We want high 5’s , wows, and congratulations.  That is what we want and are going to strive for.  We are only telling people who can help us and that need to know.  No need for sorrow or pity. 

Now be sure to get back to me here on this.  I’m going to come back to this section in November and hopefully we’ll be getting those pats on the back.  They are so much better.

Mood Swings, MRI Results – Fighting Breast Cancer

“It’s time to focus not only on the opportunity we have, but how we can improve.  It’s also a time to communicate openly”.

Every day brings new results, new problems, new hope, etc.  Every day we run into someone else we tell about the cancer and they offer their help.  It is also a time to spot the problems in your relationship.  The pychological impact of living with cancer is now starting to really creep into our relationship.

I hate myself sometimes.  How can I argue with my wife who is struggling with cancer and is about to face a key life event?  I want so much for her to be happy, but obviously this cancer is creating tension that strains the fabric of your relationship.  We have always noted our issues in our marriage, but in times of crisis, these small things get magnified.

Our basic problem is the same as everyone else.  You’ve seen the commercials where the husband and wife go shopping and asks for his choice on color for shoes, and other items and whatever he picks, she goes with the other?  Well that is our life in a nutshell.  To be honest I am okay with this on most matters of trivial decision-making.  In fact, I’m partly to blame as I’ve always been attracted to neurotic people.  My dad used to say “It hasn’t been easy” when asked about his marriage.  I’ve never wanted the storybook marriage,.  I want excitement, challenges, change, etc.  My wife has given me all of that and I find many of her quirks very endearing,  but these days my frustration is growing as I try to be helpful.  My wife is asking me which doctor she should go to and choosing the other one, asking me which reconstruction size she should try and going with the other one and on and on and on……I finally lashed out last night and told her that if she wanted to go this alone, then go right ahead.  I told her I was the one feeling like he was on an island and if she had a choice, then don’t ask me anymore.  I wasn’t sure if she was disagreeing with my choices or really choosing what she wanted.  I didn’t want her to choose the wrong one because it had become a habit to go with the other choice.  In the end, I didn’t need to be disagreed with, but rather just have her choose what she wanted.  I told her that this is no longer a game and that I can’t take the rejection along with the stress.  I’m here to provide support but not at the expense of being bashed against the rocks.

Was I being selfish?  Insensitive?  Fortunately my wife came around and apologized.  I told her this has to stop completely.  Not just now, but after 20 years of this, I was flat broken down.  We can’t be like this and revert back to our bad habits when we are faced with this life crisis.  We made up, but it made us both think.

I reminded her that we have to start dreaming again like we said we would do at the beginning.  Separate dreams, big dreams, long-term dreams would help us.  We also needed to work on eliminating some of our faults, our unnecessary habits, and other things which we waste our time and effort on each day.  It was just the contrarian in my wife.  She never rejects my thoughts maliciously.  She just always likes to see the other side of the coin. If my glass is half full, hers is half empty and vice versa.  Some say that we are perfect complements to each other.  Well sometimes being black and white isn’t always the best.  Being gray together helps bring the harmony.

Well we were at least dragged out of our despair with a great email this morning from her canecer surgeon.  She wrote that my wife’s MRI came back clear on her nodes and both breasts other than the cancer we’ve identified.  This increases the chances even more that my wife will not require any sort of chemo, radiation or other unlikely road bumps that will alter her recovery.  The last hurdle will be the final pathology of the cancer and the nodes which occurs post-surgery.  We’re almost there at the top of the mountain it seems and yet we haven’t even started to get our harnesses on.

We are now on a high again on that emotional roller coaster.  The energy is flowing for both of us.  we can now get back to work and focus on being productive in life, work, and our marriage for the next two weeks.

15 days and Counting – Preparing for our Fight against Breast Cancer

“You know you are in Love when the other person’s individual happiness is more important than the desires you have for the two of you together.”

It is still over 2 weeks to go and we are still waiting for MRI results.  That’s a good thing I think.  We’ve gotten into a good routine and my wife has refocused her mental energy on work and the kids.  I am personally struggling with how to keep things together for the 2-3 weeks where I will have to carry 100% of the physical action while also maintaining a full load of work.  I don’t want my kids to feel like we are tossing them around to other people to drive them everywhere.  My 8-year old son is already getting a little clingy with his mother.  The kids have been excellent though understanding that mommy is going to need them to help out.  I’ve avoided telling them the exact day of the surgery as I don’t want to stress them out the morning that i take them to school.  We’ve basically explained this as another business trip for mom except that she is going to be exhausted for a couple weeks when she gets back.  These next two weeks they are practicing “staying out of mom’s hair” while mom gets work done on her projects.  They are growing up through this process fairly quickly, but after it is all over we are going to have to help them become silly kids again.

Yes, mental distractions are what we are continuing to strive for as we try to remain busy.  My wife told me a few things she is going to do in the next couple days that I would normally have said “No” to, but right now I just want her to keep happy.  The other day I finally awoke to a birthday and didn’t realize it was that day until I got a call that afternoon.  Suddenly if dawned on me that I was definitely distracted by my concern for my wife that normal everyday events which are important to me were no longer a priority.

My wife commented to me last night as we watched the closing ceremonies that having the Olympics on the last two weeks really helped to challenge her inner spirit.  It wasn’t just the stories of Michael Phelps and Usain Bolt, but the stories of age over youth (Jeannie Longo and Sara Torres), overcoming tragedy (Hugh mcCutcheon), unbearable pain (Zuzana Thomas), handicap (Natalie du Toit), and a year long struggle and grieving for the loss of a loved one (Matthias Steiner) that have inspired her that the mind can heal and drive you to greater things if you want them.

I told her she can have whatever she wants.  We just have to start thinking about what those things are.

More Waiting – A Loving Fight against Breast Cancer

“The mind is a powerful tool.  Let’s use it to distract and heal us during these trying times.”

As a distance runner, I often found that when the pain hit my legs and abdomen that I could often find something else to focus on to either motivate me or distract me from the pain my body was feeling.  My wife is still feeling the anxiety.  She has developed a cough but I noticed that it goes away when she is not sitting still.  We did a family outing yesterday to a baseball came and her cough magically disappeared.  The same thing happened when we went out that evening with friends.  But as we went to bed, the cough was there again along with her Ricola lozenges.

Still, she is worried.  As I mentioned before, her doctor ordered her a chest X-ray which revealed clear lungs just to make her feel better.  We also had more meetings.  She went in for an optional Genetic test to see if she is a carrier of a rare gene that studies have found is carried my patients with breast cancer showing a predisposition for ovarian cancer.  If your mother had breast and ovarian cancer, it is very likely (50%) that you might have it as well.  We are waiting on that test result.  My wife also had her MRI of her lymph nodes and other chest.  Usually this would have taken place before the meeting with the plastic surgeon, but the scheduling gods were not with us.  There was nothing that could be seen from the initial peek at it, but we will have to wait until tomorrow to hear the results from her doctor.  Hopefully it will be more good news and everything will continue to go as planned.

In the meantime, my wife and I have decided that she needs to get distracted and keep her mind off of things.  She has taken on a huge consulting job that she is going to throw herself into during the next couple of weeks.  I took the kids out today so that she could work on the project, get the kids away from her for a bit and immerse herself.  It gives her something different to talk about and to keep her mind working over the next 12-14 days.

As for me, those runs are distracting me too from the pain.  Only now I can only think of my wife as I go for my runs.  How much I love her,  how much I respect her, and how much I want her to pull out of this better than ever.  Tonight I ran double more normal run as I missed a turn as I was so distracted by my own thoughts.  My body felt good and strong.  I guess the mind really is the most powerful healing tool in the body.

Meeting the Plastic Surgeon – Alternative Breast Cancer Options

” I’m sorry for being selfish.  Cancer is affecting both of us more than I let on”

We had our first disagreement since my wife’s diagnosis with breast cancer and it ironically happened after meeting with the plastic surgeon.  Stepping back, my wife has been given the opportunity to have a surgery that is not offered everywhere to everyone.  In fact, it was not an option we were aware of until we met with our breast cancer surgeon.  4 years prior when my mother had breast cancer, the skin-sparing mastectomy was not readily offered.  When originally told my wife was eligible for a lumpectomy, we both felt relieved, yet my wife and I knew that this is something we wanted to be overwith since both of our mothers had chosen for mastectomies and were doing fine (hers ahad a double or bilateral and my mother only had a single).  We chose for a bilateral mastectomy given all the options and our doctor told us this was not unusual for people our age.

It had been about 10 days since my we met with the cancer surgeon and now we were meeting with our plastic surgeon.  The process was very complete and they had typed up our laundry list of questions (recovery time, how is it done, infections, time of surgery, pictures, etc.).  As a husband, you are wondering who is this guy?  What does he look like?  Is he some slick tanned golfer?  A pervert? Actually he was perfect.  A no-nonsense guy and very matter-of-fact.  Interestingly enough there were more people in our room for the plastic surgery consultation than in with the cancer surgery consultation.  This is where my diagreement with my wife occurred. 

I am in this strictly for my wife and mother of our children.  If she had decided against reconstruction that is her choice.  It is her boday and I’d be happy with it.  We’ve had many discussions on this topic in private and she knows I am with her every step of the way.  Before diagnosed with breast cancer my wife had been undergoing therapy for a bad back as caused by her size DD breasts.  Ironically a mastectomy would reduce that weight and hopefully help her.We had both come to the conclusion that if she wanted to have reconstruction that a smaller size would be great as long as it was good for her.  I told her that I was in agremement as long as it was up to her.

What many men don’t realize that this is a very serious topic and not the same as some starlet getting new breasts.  Check out this idiot’s article in Glamour that upset my wife today!  This is my wife and I am not some kid in a candy shop.  If you had asked me before I would have told you I’m a leg man.  BUT, my wife’s breasts are part of her identity whether she hates them or not.  Without them she’d probably be off balance emotionally as well as physically.  I think that the average large breasted women are more inclined to say that they want reconstruction (at a smaller size) after their surgery because they know what is is like.  I don’t know about smaller sized women who want bigger breasts (post-cancer surgery).

Anyway, my wife is the typical person who asks me questions all the time, but this is not the one time when I wanted her to do that.  The plastic surgeon and his team pointedly asked me questions several times and I deftly pitched them to my wife saying it is her decision.  I felt like the team was trying to make sure I wasn’t some “pig” husband trying to push his wife into getting a fake rack.  My wife kept coming back to me and saying.  Should I have a “C’ or a “D”? 

Look, “This isn’t like choosing shoes or trying on clothes”, I yelled at her afterwards. “These people are trying to make sure YOU want this and that I am not pushing you to do this.  I want YOU to show them this is your decision and not OURS!  The only thing I want is for you to be happy with whatever you get”.

To my wife’s credit, she wasn’t focused on my thoughts and predicament.  This was the normal way we made decisions everyday.  We have always been a 50/50 couple.  She didn’t realize she was putting me on the spot in front of the surgeon and his team.  She forgot about my feelings and the stress I was under as well.  I reminded her that because of costs, you can’t change your mind 50 million times when shopping like she does at Target.  I might not go to any follow up meetings with my wife and the plastic surgeon as I don’t want to be on the spot again and I don’t want to be scrutinized like that again.  Society does that to you.  I know there will be people in the future who will look at my wife and say, “Oh, she has a fake rack.  Her husband must be a pig for doing that”.  I even might have been one of those people.  Never again. 

Other than that the consultation did provide some eye-opening informations.  Overall it is only adding 45 minutes to the total surgery.  Each mastectomy takes about 2 hours.  His part takes 45 minutes.  Once the cancer surgeon is done with the first breast, and moves to the second breast, he can start.  Recovery should be two weeks and they say not to drive for 2 weeks because you likely can’t react for several weeks fast enough without hurting yourself.  Then (depending upon any radiation or chemo) you get pumped with saline in 4 weekly sessions.    After the sessions, you get the saline replaced with silicone in a separate procedure.  If there is radiation and or chemo involved, they wait until after the treatments to swap out the saline.  They say infections do occur within 20% of the patients and that is because of the radiation most likely.

The skin-sparing surgery my wife is having is the most interesting and newest part of the procedure.  it must be done at the same time as the cancer surgery.  It preserves the nipple and is done through a crescent shaped incision above the nipple.  In the past, this incision was done with the nipple removal.  This surgery thus does not require nipple reconstruction or tattooing.  Amazingly enough in looking at pictures provied by the pysician, he showed us some photos which were amazing.  in 2 of the 3 that he showed us, the woman had chosedn to get a lumpectomy and then later had to have mastectomies.  That sealed the deal.  It told us that my wife was making a very informed and yet not -so radical decision to have the bilateral mastectomy.

Next up: The MRI and genetic testing

Day 10 – Letting go – Loving someone with breast cancer

Your strength allows me to live and thrive”

Traveling away from your spouse when she has breast cancer is so hard.  I spent the whole night before leaving for my strip just preoaring things around the house so my wife would not have to deal with them while I am gone.  Leaving my wife for a few days is hard.  This is not just any business trip when you know your sife is hurting and you have to leave her.  That is not waht you do when you love someone.

Even on the airport shuttle I ran into a gentleman who was traveling to visit his cousin who is dying of breast cancer.  It jsut seems to be everywhere I look.  Someone is talking about breast cancer.  At this conference I ran into the conference organizer who tahnked me for my contribution to her 3-day cancer walk efforts.

I do thank my wife for being strong enough to let me continue to work, to let the kids continue to enjoy their summer and for those around her to not feel uncomfortable when they are with her.

In reality nothing can really happen while she is gone.  Breast cancer takes years to matastecize according to what her doctor said.  Things don’t change that rapidly.  Now her doctors only have a limited view through my wife’s mammogram so while we believe we are only at Stage 1 breast cancer, we’ll know more after the MRI and other tests.  It just still is hard to be away.  My wife though let me know that she is okay and that she knows that I love her more than ever.  It does give me some peace of mind.

Enjoy Life – A Loving Fight against Breast Cancer

“Be the Tortoise, not the Hare.  This is not a race.”

Is it ironic that the little saying on the nametag of the waitress at Heidi’s in Lake Tahoe said, “Enjoy Life”?  It was our last day of a wonderful vacation with family and I asked our perky 54 year old waitress why it said that on her tag.  She said that she had gone through some struggles in life and appreciated what she had.  She said she took the time to smell the roses every day.

I think my wife has embraced this battle with so much vigor that she might burn out.  I don’t want to slow her down as I see her energy being used to distract herself, but I also see how tired she is from runnning around all day and talking to people.  She has gotten hoarse from talking nad has developed a bit of a cough that has her worried.

Fortunately her doctor ordered her a chest x-ray just for piece of mind.  My wife sometimes gets thoughts in her head and no matter what I say, she is going to think what she is going to think.  Stubborn?  Head strong?  Maybe a little of each. 

The battle now is to get her to slow down and smell the roses.   Its hard too get her to settle down and stop talking.  The anxiety is taking its toll and she is still finding her short of breath.  She knows that this might be all in her head, but the only way to get it out of her head is to see for herself.

She has been definitely more resourceful of late which is a refreshing change, but I don’t expect her to be Superwoman.  She understands she has to slow it down.  I just have to remind her.

24 days and building stamina – A Loving Fight

There is no i in “Team” or in “cancer”.

Today we took a rest after a 3 mile family hike and a nice swim.  It was nice to get out, breathe some fresh air again and hold hands as a family.  My wife and I talked about making sutre that the next 24 days are spent getting in some good exercise and staying healthy as the recovery period will sap her energy and afford her little time to keep in shape.  We’ve been reading from some people that there was little weight loss and have been told that resting in bed will give little time to stay in shape.

Reading inspirational stories from 40+ something athletes like Dara Torres who are in better shape now than in their 20s helps as a motivational story.  Lance Armstrong, Scott Hamilton, Sheryl Crow and other celebrities act as inspiration.  the more she realizes she is not alone and that thousands of people are surviving in their own way, my wife has started to focus on “how she is going to survive” and not “how she might die” or “how she is going to be losing a limb”. 

Even our children are getting more into the spirit.  Our 8 year old son has adopted a regimen of 10 pushups every morning.  Our 6 year old daughter with her little legs worked hard to keep up with us on the hike and nodded to me several times while pointing to her little “yellow” Live Strong bracelet.  Later when our son acted up by defying an order from my wife as well and when I shot him a look, he nodded, and apologized.  Our kids are learning  every day that this is going to be a team battle and a long journey.  My son asked me today if this will be happening soon.  I told him this will still be three weeks away and he smiled saying….”Seems like forever”.

This will be a battle of endurance and we are not even to the peak (no valleys here).

Learning to live high with breast cancer

Watching you enjoy yourself at a time of great internal discomfort makes me cry with joy.

Today marks 25 days until my wife’s surgery as we are on vacation.  One of my wife’s biggest fear is heights.  Actually my wife usually won’t admit that she has many fears, but she procrastinates over many things before making me plead desperately for her to make an effort.  Today we are on vacation and I wanted to take the family on a gondola ride up to the top of Heavenly Valley in Lake Tahoe.  In the past she would have complained about the price or found something less strenuous to do.

Instead she encouraged our young daughter that we were going to see something wonderful and that there was nothing to be scared about.  My wife made every attempt to look comfortable as our gondola climbed to over 9300 feet in elevation.  Once we reached the top we went for a 2 mile hike to the top of the site of the Olympic downhill. As I looked around, I saw her overlooking Lake Tahoe with her eyes closed and taking a deep breath as the sun shined on her face making her look glowing.  She looked so peaceful as she sucked in a huge breath of the fresh thin Sierra Nevada air.  She caught me glancing and posed for a photo with the majestic escenery behind her. A powerful and evrlasting image for me.

Why so powerful?  It made me feel good to know that she was ready to take on her fears, to live life and to enjoy the day and make us all feel a bit better.  I know she had sensed our tensions flying over the past week and I think she is just letting us know that she is going to lead us through it all herself.  We had a long day full of the beach, golf, hot tub and my own birthday, but the best part was watching her on the scary gondola ride and the difficult hike.

Breast cancer – a strain on the family

“You are not alone – we are all here to fight and recover with you.  Don’t fight alone.”

We have made a conscious decision to be honest with our children yet at the same time to try not to disrupt their schedule.  We are sensing some sensitivity in our eldest son.  It has been a struggle for him as he has always been close to his mother yet at the same time very unobservant about things around him. He’s suddenly finding how his actions affect others and how he might have the opportunity to help his mother in her recovery.

We have had the children hand out Livestrong wrist bands to relatives to tell them to support their mother in her fight.  Many ask why we are not wearing the pink bands specifically for breast cancer but we don’t want to advertise too much that my wife is specifically suffering from breast cancer.  Handing out and wearing the bands really makes our children feel like they are helping their mother and I can tell that they are proud to support her although they probably do not (and purposely on our part) truly understand the seriousness.

We did hear that it will take about two weeks to recover to be able to drive and not feel as tired.  I’ve had to reschedule a few meetings to make sure that I will be around to help her with the kids.  I could use help from all of her friends and my family but I just have to be there.    This really isn’t a strain for our family but a labor of love for a wife and mother.