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Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

It Just Doesn’t Stop – A Loving Fight

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“Houston, we have lift off”

When my wife called to tell me that she had been called by the doctor with a date for swap-out surgery, I could hear the joy in her voice.  The fact that this was going to be the day for birthday all I could say was “Happy Birthday” and she giggled.  I was running the other night and realized that it had been two months since her surgery.  it seemed like ages ago when I was helping to strip her drains and bring her meals in bed.  Hearing her news I was ready to start thinking about life after cancer and was just thinking of jumping for joy.  It was a simple thing like when a rocket takes off into space and all the guys at NASA jump for joy over launching a space ship.  The tone of the conversation quickly dulled though when my wife told me that the mother of one of our son’s classmates was just diagnosed with breast cancer.

It hit me there.  This fight will never be over.  We are forever going to be meeting new comrades in arms.  It will be a daily reminder of how fortunate we are and how far we’ve come.

Oddly, someone asked me what I thought about the equal rights issues for the gay and lesbian community.  i told them I didn’t have much thought about it right now and they got mad.  I told them we all have out issues.  There are autoworkers who are going to lose their jobs, parents who have lost their children in a war, etc.  I just don’t know how people can be mad at others for putting their personal issues right now over other issues that many people are suffering with which are also equally important.

Back to my wife’s treatment, the next 5 years will be consumed by my wife receiving follow up therapy for her cancer.  Although very low on risk, my wife cares for our children and our family to want to do all that she can to beat this disease.

She has slowly taken herself off the Atavin and is getting off the Ibuprofen in preparation for her surgery.  She is back working on her consulting projects and although tired and taking mid-day naps, she has resumed most of her household duties although I still take the kids to school and do all the grocery shopping.  I watch her with the children and she is soaking in every moment cuddling with them at bedtime, reading as a guest reader in school, chaperoning on field trips, she has a renewed energy to consume life that I haven’t seen in a long time.

Yes, cancer is a Brave New World.

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As an aside I just passed my 1,000 mile mark for running this year.  And when I took my car in today, I realized I’d only driven my car 3,200 miles this year.  Not bad.  I guess you can say I’ve lived a pretty “green” life this year.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Power of Positive – Life is a Highway

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“I don’t want to be a Ee-yore”

I got back from my run tonight and realized that I am just short of 1,000 miles for the year.  Since I don’t run competitively anymore it really means 6500 minutes of thinking time.  Time to contemplate my life, my problems, my failures, my hopes and most importantly my solutions.

I’ve always thought that there has to be an answer to things.  Most importantly, there is an answer to sadness and failure.  You just have to think things out.  This weekend while seemingly normal (if you can call it that) It has been hard lately in our house.  It was a hard weekend emotionally as we had to revisit our situation.  Once the negative thoughts and comments creep in, it just changes the tone of our home.  I noticed my wife was raining on my parade a bit over the last week.  She’s always been the realist in our relationship while I have been the dreamer.  We have always worked hard to balance each other out without the expense of ruining the other person’s day.  This has changed though, recently, and we had to have a bit of a discussion to clear the air.  Lots of tears were shed.  Thoughts of frustration over the delay of surgery and the starting of Tamoxifen treatment had a greater change in outlook than expected.

I also realized that I was remaining distant.  It wasn’t because i was avioiding my wife but rather because she was pushing me away by not wanting to hear my opinion.  It is hard. You try to be selfish with your time, yet to be there for the other psrson.  I’m finding it hard to stay positive for the both of us when I’m tired and not feeling heard.

Last week our visit to the oncologist was long as usual.  I went along for support.  It had been a while since i had been back to the cancer clinic and although it is a pleasant place for a cancer clinic, it is a place where you lose your ability to control the situation.  The wait for our reknowned oncologist while waiting in an 8′ x 10′ foot room is always nerve-wracking.  It gave us time to communicate though.  I told my wife that although I was there to support her, the decision she made for her treatment was all hers.  I told her any kind of optional treatment that meant getting shots or inconveniencing myself were my deal breakers although that ahould not be method of reasoning.  She agreed and after listening to the fellow, she told me she was going to choose Tamoxifen with Ovarian suppression.    I told her I was definitely going to support her no matter what.  Well 10 minutes later and her oncologist walks in and convinces her to go with a bisphosphonate trial.

As we walked out, my wife said, “I know what you are thinking.”  I told her it was typical of her not going with my opinion and even worse not sticking with her own convictions.  I told her I was still okay with her choice, but I could tell she was frustrated with herself.  This carried into her negative thoughts and comments over the last few days.  She was frustrated in not being able to control things and that for once she was not able to do it her way or felt like she was just putting her life in the hands of another.

I told her that her concerns were legitimate and that she was just going to have to stick with her convictions or be more open to listening to others.  On the other hand I promised to not be so “darned positive”.

Well we should hear tomorrow when the next surgery will be.  That should help bury some of the frustration of not knowing and not being in charge.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Living in Limbo – The Highway of Life

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Is it making you laugh?  Is it making you cry? – Sugarland

Tomorrow is our follow up appointment with my wife’s oncologist.  I hope we can come to a decision on what we are doing going forward.  We really are in limbo here.  I feel as if we are being held captive by surgery dates, concerns about travel, medications, etc.  Holiday travel and just getting on with life and living it the way we’ve discussed is what we are looking forward to.  I’m already looking forward to taking her to see Elton John in Vegas for Valentine’s Day 2009.  Its one of those once in a lifetime shows that I think we need to see.  We just missed seeing James Brown last year and had tickets to see a show but he died.

As I mentioned in my last entry, this journey has really helped me to assess my love for my wife.  Each night when I run, I remind myself of all of our great memories and all the things I still want to do with her.  They say when you run, you can get a runner’s high.  Tonight was one of those nights.  I matched my highschool cross country times from over 20 years ago on our cross country course. I wasn’t even trying and I was a little shocked when I checked my watch.  It was a full minute faster than I’d been runing this month.  All I remember doing was listening some music by Sugarland and the next thing you know my run was over.  I barely even remember running up the steep hill near the end of my run.  I was listening so intently to the lyrics of one of their songs, I just lost track of my time.

Well eat your heart Dara Torres!  I too can do in my 40s what those half our age can do.  Now I just wish we could find the time to accomplish more in life.

Breast Cancer - A Loving Fight

Making a Difference & Feeling Fortunate

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“This is a part of me now.  Even without religion, this would be my religion”

Tomorrow morning we will meet the oncologist and hopefully get all our questions out of the way.  What is our score?  What does that mean?  What choices are there?  What are the risks?  What are the side effects?  How will that effect my/our lifestyle?  Blah! Blah! Blah!

My wife the eternal list maker has worked on a total of 4 pages of questions.  When she passed the list to me I could only smile.  She had the energy to create one of her famous “lists”.  Also on the list was, “Will it change my relationship with my husband?”  I told her to scratch it as I could answer that for her.  The answer is “yes”.  “Yes that it already has changed our love.  It has put it under a microscope and magnified it for us to inspect and see that it is okay.  It has shown us that we have enough love to go around”.

I know that it wasn’t “that kind of love” she was talking about, but I wanted her to know that the side effects weren’t going to change anything about how I feel and shouldn’t be a reason to change her decision.

Still uncomfortable, she calls her expanders a bullet proof vest or a chastity bra.  Humor has come out of her that I’ve never seen before.  Calling herself the Bionic Woman..”We can rebuild her…stronger, faster…” and wondering where she might be able to find those Gauthier cone bras that Madonna wore in the 90s are all ways of her making light of the uncomfortable feeling she has on her chest.  I know it is her way of coping.  I think she didn’t want to watch the chemo / hormone therapy tape last night because she purposely wanted me to just tell it like it is.  That tape was like a movie both of us dreaded watching, but was a real thinking video which made us realize how much thought we/she is/are going to have to put into the treatment plan.

Chemo would be a drag.  She has gotten almost all of her energy back and her desire to take back some of the responsibilities that I had taken over are there.  The chemo would seriously be a setback so we’ll see tomorrow.  All signs point to no chemo, but I think we’ll breathe an even heavier sigh once that option comes out of the mouth of her oncologist.

Tonight she got a call from her OB/GYN, the one who discovered the cancer.  This is what medicine used to be.  Your doctor calling to see how you are doing out of the blue.  It had been a while and since my wife self-referred herself to a different medical group for surgery and oncology, she hadn’t been as visible to everything as she normally would have.  She is getting her records which is a good thing as we wanted to make sure that she knew where my wife was in the process.

The call made my wife smile as did the email from her old colleague who has been seeing the same oncologist ,that she will be going to, for the last 3 years.  Her colleague said that she lived quietly with cancer for the last 3 years and was now just ready to let it out.  She wanted to share her story like everyone else as long as she could affect or convince someone else to go get tested.  My wife said she also saw a special today on Robin Roberts in honor of Breast Cancer Awareness month and she too said it was time to make a difference.  My wife said she wants to make a difference and she is going to figure how at work, at home, and in the community.  She said cancer prevention and detection is her belief and even if she didn’t have a religion, fighting cancer would be it.

Amen.

Breast Cancer - A Loving Fight

Think , Laugh & Cry – A Loving Fight against Breast Cancer

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“Don’t forget to think, laugh and cry everyday.”

 

(note, wrote this on the way down to LA this morning).

 

Those famous words from Jim Valvano came to mind as I watched Oprah’s episode with Christina Applegate and breast cancer last night.  I cried not just for our situation, not just for Christina, but for all people suffering from any kind of cancer.

 

Today as I make (made) one of my day-long trips down to Hollywood for business, I just find myself wrapped in thought and emotion.  This is a trip I was supposed to make weeks ago, but everyone delayed the meeting mostly because I couldn’t make it because of my wife’s surgery.  Short plane rides, showers and bathroom stalls are just some of those places where time stands still and all my emotions come flooding in.  Sitting on a plane and just starting to cry is a weird thing.  I think of those times with my dad in the hospital, then my mom in the hospital and now with my wife’s visits to the hospital and think how lucky I am to still have two of those three people left in my life.

 

This morning was the first day I ever recall walking as a family to school.  You see it on TV where the family unit of four walks to school together down a tree-lined street.  We held hands said hello to other kids and parents we met.  It felt so normal.  We kissed our kids, sending them off with a hearty “Take care of your body” and my wife and I walked back to our car holding hands.  We never hold hands.  Is this the new us?  I don’t know if we can do that forever, but it sure felt nice.

 

Although I’ll be back tonight, I am still concerned for my wife, wanting to make sure she is okay.  She promised that she’d take it easy as long as I made sure to immerse myself back in my work and stop worrying just a little.  I can try that.  I reminded her that I just have a whole new appreciation for how much it means for her to still be with me.

 

One of the movies showing on the plane in October is “The Bucket List” starring Morgan Freeman and Jack Nicholson.  It’s about two guys with terminal cancer who have a list of things to do before they “kick the bucket”.  We wanted to see that movie before she was diagnosed.  I think we need a good laugh now and will watch it this weekend.  We might also find it inspiring.

 

Yes, definitely doing a little laughing, thinking and crying today.  It does feel good to let those emotions out. It feels real human.  The words my wife took from Oprah’s show with Christina Applegate were those words that Melissa Etheridge gave her, “This is a blessing and you now can live your life the way you want to”  or something like that.  Well blessing isn’t really the right word here.  A wake up call?  Maybe that is it.  We had definitely started doing that and my wife was onboard with that mentality, but we had forgotten it.  She told me this morning before I left, ” I need to put the past behind and start living.”

 

Amen

Breast Cancer - A Loving Fight

3 weeks post-surgery – A Loving Fight Against Breast Cancer

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“Keep resting, take your chances to rest.”

Well we are now 3 weeks post-surgery and we are slowly moving back to normal.  We both have finally gotten rid of our coughs which both hit us around the time that she was diagnosed.  I’m thinking it was a bit psychosematic (sp?) but either way, it’s all done. 

I’m still dropping off the kids and preparing everyone’s breakfast and lunch as she is still weak in the mornings and has not regained her stamina.  Picking up the kids in the afternoons and helping them go to their activities is exhausting and I see the weakness in her.  We had a long discussion to remind her to her rest when she can.  She has resumed light work which again is a good distraction for her, but she can barely stay awake at the end of the day.  She has also been going on walks with friends so I think that is helping to both get her out, but also take a lot of her energy away.

We did watch Christina Applegate on Oprah today.  Yes, I watched Oprah.  It was good for her to see Christina Applegate and her diagnosis.  They are very similar in age and diagnosis as well as surgery and timing.  I don’t think we learned anything new but I could see my wife breath just a sigh of relief.  It is the sigh of knowing that she has more people like her.  She is not alone and not left wondering why her as opposed to someone else.

It is still hard to leave her alone.  As someone recently said to me, men just want to fix things.  I do.  I want to make her feel better.  Traveling again for work is difficult to do.  Leaving her and not being close to help is so hard.  It is good though to get immersed in work again for one week (before next week’s oncologist appointment). 

At dinner though our son did ask us about the other mother of a classmate in his school who died of breast cancer.  We had to remind him that her case was different and that there are all kinds of situations.  He was also under the impression she passed after visiting the hospital again.  This explains a little why he is worried each time we go to the hospital.  Hopefully he understands a little better now.   It is best to remind our children to ask us every time they have a new question.

As a funny aside, today I met Kathy Ireland!  Wow, pretty amazing.  I was speaking at a Social Media Marketing Sunmmit and walked in to the Speakers Area before the conference and there she was.  it was like the episode od Friends where Chandler gets caught in a banking vestibule with Jill Goodacre.  Kathy even knew my name which left me feeling like I was 15 again.  My wife had a good laugh when I Tweeted her and told her I was sitting next to Kathy Ireland.  She knew at least it was relieving the tension of giving my speech.  It went well by the way.

Breast Cancer - A Loving Fight

Back to our regularly scheduled programming? Well almost.

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“You’re not quite ready to be a full time soccer mom.”

Weekend number 3 after surgery and we started to try to get back to something normal.  Soccer season with two games across at the same time required logistical gymnastics.  Another mom drove her and our daughter to the game.  She never watches but I made her promise me that she’d stay in the car and watch the game or at least watch the whole game and not take her eye off the ball if she stood on the sideline.  I reminded her that a kid or ball running into her would not be good and that she wasn’t quite ready to be a full time soccer mom.  Of course she didn’t listen, stood on the sideline, and according to our daughter, took a ball in the hip.  Yikes!

The next day was a cousin’s wedding reception.  We have lots of older sick relatives so we hadn’t told them anything.  It was a crowded restaurant with very little wiggle room so my son and I played like offensive linemen protecting her from any blind-sided impact or overzealous hugging relatives.  Somehow we made it through the 3-hour ordeal with her being totally exhausted but happy to get out of the house.  She also had the chance to talk to a cousin and a couple of aunts who had had breast cancer.  They consoled her and reassured her that all would be well.  Their stories were all different.  My cousin had the same surgery my wife did.  One aunt had a lumpectomy and had to go back for a bilateral mastectomy.  Another had a mastectomy and reconstruction on one side.  At one point the 3 of them and my mother all took a photo together with the bride.  I alone shed a tear thinking how these 4 women all indirectly related by marriage were impacted by cancer and were sisters in a community of women who have been through a lot.  There were no shared genes.  All connected by marriage and a similar disease and very bright smiles.  I don’t think they even realized the circumstances of who was in that photo.

My wife did say that the pain was lesser and that she only seemed to be pained later in the afternoon.  She really looks great and I know part of it is her always positive style which I told her she needed to put away sometimes.  While it is good to look great so everyone can feel good for her, there might still be some tough times ahead and she might have to let everyone understand that.  We still won’t know her possible chemo plan for another week.

The week is starting off okay.  I’m still taking the kids to school and she is now picking the kids up.  I think the kids really feel better knowing mom is okay enough to pick them up and play chauffeur again.  I have to remind them to take it easy on her though.  Her mobility is good and we don’t have any visits to the PS this week so it is just a good week to get things done.  The hard part for me is to get back to work and keep my concentration.  I do worry and call just to make sure she is okay.  Letting go is going to be a hard one for me as I will not feel comfortable until she has fully regained her strength and we feel like we can truly begin the healing process.

It is hard to believe it has only been two months since her diagnosis.  It seems like forever.  And we still have a litle longer to go.

Breast Cancer - A Loving Fight

2nd weekend after Breast cancer surgery – A Linear Life

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“My life seems so simple yet so complex”

Going into the weekend, life seemed normal post-surgery.  We had just had a meeting with the plastic surgeon, we were ahead of sechedul and there seemed to be no complications.  Saturday morning we awoke to a “bloody mess”.    Blood in the sheets and her drains seemed to be emitting so much more fluid.  “Perhaps we knicked a blood vessel yesterday!”, no big deal was what we were told.  Bandages had to be replaced by me and it was still leaking so we went in to the hospital get this fixed.  All this on kid’s soccer morning!  Stress 101!

Well the doctor was on call and she patched us up.  A small hematoma had been looking for a place to drain and found it’s spot.  Yechhhh!  Well I guess things could have been worse, but at least we were now patched up and could live our SIMPLE but cancer-affected life the rest of the weekend.  Our kids?  They just thought it was one of the many follow-up appointments and it seemed to roll right off their backs.  Soccer Saturday stress was averted.

THE DRAINS!  They seemed to be our focus right now.  Cancer has a way of doing that to you.  At first it’s dealing with the diagnosis, then it is the waiting, then it is the surgery, now its the discomfort of the drains.  There are tons of other things going on in her life and you have to find ways to take her attention off those uncomfortable subject matters.  For me this has been the most difficult one.  It is just difficult visually to look at.  “My life seems so simple, yet so complex.  I take pills, I empty these lousy drains and I rest.  The rest of it just revolves around me.  Chemotherapy is sounding like a nice change of pace.”  Comments like that from her help me understand what she is going through.  She’s in pain.  she’s hurting, and she’s bored.  I really understand what she feels and it’s killing me to see her go through this.  Yes, this linear life has changed her.  It’s focused her.  It’s focused us. 

The new goal for now: Get these darned drains taken out!  Did we say goals?  We need to go back to the old posting about our goals and change them here.  We just never envisioned these drains being so painful.  Still emitting around 35ccs per side, so we are almost down to the magical 30ccs.

Breast Cancer - A Loving Fight

Courage and Connectedness – One week after the mastectomy

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“It’s all about Courage and Connectedness”

One week after the surgery and we are slowly getting back to a semi-routine.  I am taking the kids to school and either I or someone else picks up the kids.  Someone drops in during the mid-day to check on her and in the evening to make sure she is okay at dinner.

Well we got the call today.  I’m not sure if we got the call we were expecting.  I guess things are never just black or white.  The news we wanted to hear is that her nodes both came back negative.  The joy in my wife’s voice was great to hear.  The doctor did say the margins were close and that perhaps we might want to do some follow-up after speaking with the oncologist.  My wife was still upbeat, but I felt like that still was not the perfect news in my eyes.  It was the first time my heart sunk.  Is she still going to need chemo?  Maybe.  Maybe just a light dosage.  I’m disappointed in myself for not being as upbeat as her.  I guess after all these months of trying to be positive, I let my guard down.

All in all though, we are still on schedule and we are thankful.  We still have the strength to carry on.

Tonight was our son’s Back to School Night in which they told us this year’s theme was about Courage and Connectedness.  The courage to try new things and face new challenges.  The ability to connect with others and stay together through tough times.  The words of the Principal almost choked me up as I sat there without my wife.  I felt like he knew that I was thinking those exact things.  We are having to have the courage to face each day anew and to face each challenge with the courage to carry on for our children.  The connectedness with our community has been so wonderful from the encouraging words to the pre-prepared meals.  We wonder what we did to deserve such kindness and help.  We really do feel so lucky compared to those who need more and don’t have such a great support network.

I even have to thank all the wonderful women and their spouses on breastcancer.org.  They’ve been so supportive and helpful and I’ve learned so much from them.  They’ve provided us with so much more information that we’d never have known to ask for.

Well, that’s it.  One week later.  Still holding at about 35ccs per drain and hoping that these drains will come out at the end of the week.  Oh that would be a nice treat.

Breast Cancer - A Loving Fight

3 Days post Breast Cancer Surgery – A Loving Fight

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“Let’s stop, smile and thank everyone”

Day 3 post surgery and we don’t want to count our chickens (well maybe the chickens people have given us and we can’t fit in our fridge), but we just feel fortunate that things have gone well so far.  My wife spent an hour online writing emails today.  It was a lot of effort for her, but she felt happy to just thank everyone even if it was a mass email.

The support and well wishing notes really are a wonderful thing to receive.  We can never say enough how fortunate we are to have family and friends who care.  Tonight at dinner we thanked our now 9 year old son and our 6 year old daughter for being such troopers this past week.  We have said they are our inspiration and a big part of our recovery.  Although they’ve shown great maturity we want them to retain lots of their kid spirit.  Our son did not get to have a huge birthday party like all of his friends, but he said he was just happy to have his mom home safe and sound.  I couldn’t agree more.

The big news today is that she felt good enough to get off the Vicodin which was still giving her headaches and makin her sluggish.  The drains are still emitting 60-65 ccs each per side for the 24 hr. period (down 10ccs from the previous 24 hours.  The nurse said they wil only take them out when they emit less than 30ccs per side for 2 consecutive days.  She does have some itchiness whcih we are told is a good sign of healing.  I asked if she felt different and she said that although she used to have a large chest that she didn’t really feel a change in the weight balance in front of her, but she wasstill feeling a sense of tingliness where they would have been.

This weekend will allow us to go a few steps further in healing our whole family and getting used to our new routine that will start to loosen up over the next few days.  We still have to watch for fevers and any swelling or irritation.  Chemo and/or radiation cannot be ruled out until we see a clean pathology report.

We have a follow up appointment in 5 days with the surgeons and hopefully the drains might get taken out and we might have a pathology repot back. 

Just a short blog note today as I’m now geting under the weather and I don’t want her to get sick now.