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

Midlife Re-birth: 8 months post-surgery

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 We don’t understand life any better at forty than at twenty, but we know it and admit it.  – Jules Renard  

This weekend marked 8 months post-surgery for my wife.  She has since had reconstruction, a follow up surgery, 6 months of shots,6 months of a test bisphosphonate, and Tamoxifen.  She has finally started to take another drug to lessen the effects of her side-effects of the drugs.  I really don’t know how she does it.  All these distractions and she continues her duties as class parent, team mom, family glue, top chef, businesswoman, and loving wife.  It’s all become par for the course.  Just yesterday she sent me a text at work to tell me that she had another follow-up procedure scheduled for the end of the summer.  It just seems like such a casual thing now for her to write me and say that she is going to have more surgery, but this is just a stage in our life, not a WAY of life.  We are going to move past this chapter.

In truth as we’ve come to realize her skin-sparing mastectomy is still a relatively new thing in the world of breast cancer surgery.  While it does save your skin and is less traumatic for the survivor than we ever imagined, there is still quite a bit different from the traditional “Hollywood boob job”.  Skin-sparing mastectomy with immediate reconstruction has become popular with patients because, compared with delayed reconstruction, it improves the cosmetic result, reduces cost and anesthetic risk, and in one sitting completes most of the surgical treatment that the patient will ever require for treatment of her breast cancer.   Provided that the breast skin is not involved with or close to the tumor, physicians prefer to perform the mastectomy with optional removal of the nipple-areolar complex (total skin sparing) and the tumor biopsy scar.  The mastectomy is otherwise the same as a standard modified radical mastectomy with removal of all breast tissue and an axillary node dissection.   The part that is difficult for most patients is that so much tissue is removed that the breast becomea basically a large water balloon that holds a big bag of silicone, saline or whatever.  Because the skin is now so much thinner, it is hard to prevent wrinkling and rippling.  With so little tissue left, the breast can look a little misshapen at times.  That said, the results do look pretty good and like life small adjust ments will be needed.  Yes, this is the procedure that you hear for celebrities like Christina Applegate. 

I know many women don’t want to talk about this too publicly.  I mean, how can you complain when you think about the alternatives?  These women are so thankful yet feel so close to what they can see is the final visual end to their suffering.  All of this though is a change.  A change from what past generations had. Not only was life extended but the quality of that life has been improved. 

It is with that frame of mind while sick the past couple of weeks it come to my mind that suddenly we were so accepting of all these new changes in our life.  We’ve reached that mid point in our life.  They talk about midlife and the word crisis is always used to describe it.  I don’t think so.  Sure we’ve come across some bumps in the road.  I told my wife that rather than a mid-life crisis, this is half-time for us.  In the world of sports, this is the time to make adjustments and a time to assess where we are, where we’ve come from and where we want to go. 

Such is mid-life for us I guess.  After taking 10 days off from running because of a nagging cold I found my rested body was now better suited to tackle my nightly runs again.  I told my wife how my body was responding and she reminded me I’m not getting any younger although I may feel young.  Either way, the rest gave me renewed energy and a new energy and perspective that allowed me to set new personal bests three days in a row.  The 10 days of mental relief reminded me of how lucky we are and how blessed our life is.  It isn’t about fate or faith, but about the sense of being.

We took our time to plan that second half, revise our targets and think about how we want to live our life.  It is not about settling.  It is about making choices and pursuing what we believe to be important to both of us.  The one thing we agreed upon is that this is a shared goal and we wouldn’t have it any other way.

Route 53 - Life is A Highway

Courage and relief – Life is a highway.

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” Life shrinks or expands in proportion to one’s courage.” – Anais Nin

Finally after five months my wife’s parents arrived to console their daughter.  I could see the relief in their eyes.  More importantly I could feel the relief in my that she felt her parents were finally concerned enough.  Their was never any doubt that they were concerned about their daughter, but their hesitation had started to wear on my wife.  Quite frankly it started to wear on me.  Her courage through all of this has been nothing less than a revelation for me.  How she was able to put so many feelings behind her as she went through this battle over the past 5 months has been amazing. 

It couldn’t come at a better time for them to arrive as my work is getting more busy with business integration coming on the heels of the holiday season.  I feel a great weight lifted off my shoulders as I can go to work knowing that someone else is around to care for my wife during the day.

Right now our only concern is that my wife is feeling uncomfortable with some redness around her stitches that is very itchy.  I am concerned there might be an infection, but we are not sure.  She’ll be able to go in with her mother to take a look again with the doctor to see if there is any relief they might be able to provide her.

I even noticed my change in my mindset as I ran tonight.  I ran an extra mile and for the first time in a long time, my wife’s cancer did not wander into my head during my 20-25 minute run.  That’s probably because I barely broke a sweat in the bitter 35 degree temperatures outside.   I’m really pleased to have broken the 1100 mile mark this year.  It feels real good and I can feel my stamina and speed to be improving each day.

Maybe now I can start to write about something new.  Hopefully it will allow me to really express some of my real passions in life.

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

Another Trip to the Hospital – Life is a Highway

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Those who are lucky are happy, and I’m happy to be lucky.  No excuses.

– Participant in the show, Survivor

The reconstruction surgery didn’t go as long as smoothly as we would have liked.  It lasted five and a half hours and will require more healing than we anticipated, but I think the relief of the surgery being over was felt both by me and her.  As soon as the surgery was over, a storm hit the city.  She was delirious but okay so I decided she was stable enough to go home for the night and get back first thing in the morning.

I woke up after 7 hours of sleep ( 2 more than I had been averaging) with a major knot in my stomach and a huge throbbing headache.  I think the stress of the week that I had been internalizing came crashing in on me.  I had read myself to sleep by reading he story of another husband who lost his wife to breast cancer.  I read the synopsis and realized how lucky I am.  I’ll write more about this book later.  I quickly grabbed some ibuprophen  and went to pick up some breakfast.  She hadn’t eaten in 35 hours so she would be famished.  Fortunately my mother had spent the night to watch the kids.  After calling her parents to tell them she was okay, I arrived at the hospital.  I would later find out that she had not told her parents before that they were going in to clear her margins some more.  She had not told them as she didn’t want them to be worried.

I was not only the last visitor to check out the night before, but I was also the first visitor to check in that morning.  Opening the door and seeing her sitting up and smiling was more than a relief.  She was in pain still and a bit week but she was hereslf again.  When she starts barking orders I know she’s fine.  There weren’t side effects from nausea like the previous surgery.  Both physicians came in and checked on her.  They said it had been slightly more complicated than thought, but that it just required more adjustments.

We were able to check out by 11am and we were soon a family again.  The children were happy to see their mother sleeping in her bed.  It was a bonding experience.  I left my son to watch his mother and get her anything she requested while I took or 6-year old daughter run errands to the pharmacy to pick up medicines, the deli to get sandwiches, and the card store to get my wife’s birthday card.  As I ran the errands, I could only think of the book I was reading and squeezed my daughters hand.  She was enjoying being my helper and I was enjoying the bonding time.

I slept the whole rest of the afternoon with my wife.  I needed the rest and she held my hand.   She requested sushi for dinner so I took the children out for sushi and brought back the leftovers.  Dinner was different.  A dinner for three instead of four.  I saw people look at us.  Was I divorced dad?  A widower?  It didn’t matter.  I knew what I was feeling.  I was thinking how much I wanted to be a complete family and how good that feels to me. 

I told her I am so happy to still have her with me and feel so fortunate.  I’ll never take her for granted again.  This week isn’t going to slow down with the holidays upon us.

Her parents arrive on Tuesday and there are a bunch of “honey do’s” that I have to get done around the house before they arrive!

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

Still Thankful – Life is a Highway

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“If I could, I wish I had the cancer, not my son” – mother of a cancer victim at the local pediatric cancer ward

This past weekend was a nice chance to sit back and be thankful for all that we have even though things are not perfect.  It has been a long four months but we are entering the home stretch.  We do have some issues and unfortunately I am frustrated that i can’t help my wife with some of her final decisions related to a clinical trial with bisphosphonates that could become a problem should my wife need oral surgery.

Other than that, life isn’t bad right now.  My wife has been able to get herself off of all her drugs and will be starting her Tamoxifen treatments tomorrow.  Her OS treatments start Thursday.  I will be having to watch her moods as these two new drugs entering her system might have an effect on her moods.  She is off of Ibuprophen and the Adavin.  Next Friday is her swap surgery and we will begin the recovery.  Its a lot to be going through with one’s body so I hope mentally she is okay.

I did have to tell our children that their mother was going to have one more procedure as I don’t want them to be worried when there mother has to go to the hospital again.  They are smart so we can’t fool them twice.  We told our kids that it is a smaller proceudre to check on their mother and make sure she is okay.

On a side note I took our son out this weekend and he got his first birdie.  I’m sure it will be the first of many.  What impressed me more was his low key manner and smile when I congratulated him.  He is learning to take life on an even level but I sure do hope that he learns to enjoy the many simple pleasures in life that he will have.

Well tomorrow is the first day of December!  I can’t believe this year is almost over!  It has definitely been one of the more trying years in my life and I am going to be happy when it is over.

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

Playing Hard & Never Giving Up – Life is a Highway

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“Don’t Stop Until the Whistle Blows”

This week I finished a fundraising event  for our school that has taken up much of the last 2 and a half months.  In this economy it is tough to fathom how hard it is to ask people to donate their time and money.  You ask once and not two or three times like the old days.  I am so grateful to all the people who were able to attend and enjoy a wonderful day.  It meant so much to hear all the people say how wonderful a time they had know that for a day much of the troubles of the economy were forgotten.

This weekend was a little different than last.  As we waited to go out for our first soccer game of the day, we caught a little of the movie “We are Marshall”, on TV.  There’s a scene when the coach talks to his team before their first game and telling them about how they can’t replace the team before them that died in a crash the year before, but that if they give it their all and don’t stop until the whistle blows that they’ll all be winners no matter what the score.  As I watched the movie I saw my children listening.  They hardly ever listen to dialogue in a movie.  We had to leave before the movie ended but our children asked about what happened as we drove to our daughter’s game.  Both children played with heart today.  It was so fun to see.  What a difference a week makes from last week.  I don’t know if it was the movie, the weather, or just the time of day, but all seemed much better than last week.

It made me think about where we are with our fight against breast cancer.  When will that whistle blow?  Maybe never.  That is why we have to live and play every day with heart and joy for our opportunity that we have.  Don’t sweat the little things and just live life to its fullest.  Tomorrow will be the last fill and then we will wait a few weeks for the final surgery.  Just in time to be thankful at Thanksgiving.

I guess we’re really at the beginning of our journey.  We have many journeys and this one although filled with much heartache and pain to start is just beginning and hopefully will only get smoother.  This past week my wife found out that a friend she told to get examined found that she had breast cancer.  At first we felt so sad that we had encouraged her to do something that brought bad news, but then she was thanked and realized that she is one of the many cancer survivors who will help to spread the word to others.  I saw a T-shirt this weekend from one of the many breast cancer fundraisers and it said it best: “Hope Begins with Us”.  It really does.

As an aside, I do have to say that I saw another T-shirt that my mother, a breast cancer survivor of 4 years, sent me.  Sometimes we are so close to this disease that we forget we have great examples around us all the time.  In the last 10 years my mother has lost her husband of 50 years, both her parents, and had breast cancer yet she is living a full and productive life.  She is currently on her third international trip of the year.  This time she is in Egypt after visiting Morocco and South Africa earlier in the year. 

It made me laugh to know that my mother is on the other side of the world yet thinking of us and sending us crazy stuff on email.  It really hit me on so many levels including the funny bone:

 CLICK HERE TO BUY IT

Breast Cancer - A Loving Fight

The Beginning of the End – A Loving Fight against Cancer

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“I’m Feeling Totally Empowered”

Meeting an oncologist seems so daunting.  Yet we were so excited to meet her.  We knew it would be a long appointment.  We heard she was thorough and with one appointment before us we ended up waiting a good 90 minutes.  We had had many discussions this week. I think we were both nervous.  All I knew is that I didn’t want my wife to have to go through chemotherapy.  It is such a toxic solution.  On my way back from the restroom I heard the fellow tell her colleagues, “they’re a nice couple and will be very receptive to options”.  We had met her a few weekends before when we were having drainage leaks on a weekend and she patched her up.

After the wait, we filled out more forms and met the fellow, the resident, and the pre-med student who crammed in the room with us.  You’d think that meeting a fairly well-known oncologist you’d think of a big oak desk surrounded by books.  Well this wasn’t Marcus Welby.  We pused into a tiny 8 x 10 room and the wait was finally over.  She told us the Oncotype number.  An 11, which means an11 percent chance of recurrence.  Tamoxifen hormonal therapy would put that number at 7%.  Chemotherapy would not be recommended!  A smile hit our faces.

Then the information hit us like stats on a Wall St. ticker tape.  25% of all cancers are undetectable on mammograms, tamoxifen is sometimes not metabolized by women, soy is not necessarily recommended product as tests are being done to check its relation to breast cancer, ……..it hit like a dumptruck of information being thrown on my head and my hand got cramps writing everything down.  Fortunately the pre-med student was typing notes away as the oncologist spoke.  Thorough and reasonable in her presentation, the oncologist laid out the basic plan for us and then gave us alternative trials with names of drugs and tests that i could not even begin to spell. We’ll have to peruse these options before our next meeting, or we could just email her our decision.

She did turn to me and ask me at one point how I was doing and what questions I had and thanksed me for attending this session and being supportive of my wife and others.  This woman knew everything.  I told her I was concerned because my wife, some aunts and both of my daughter’s grandmothers had breast cancer.  She took notes and then told me I needed to be tested as well to see if I carried the gene that could possibly be passed to my daughter.  I gulped.  Wow.  Sure i will get tested.  When my wife goes to get tested for the Braca gene, so will I.

The only time I felt uncomfortable was when they started talking about the side effects of tamoxifen and the other therapies: Tiredness, osteocrenosis of the jaw, menapausal symptoms, loss of libido, hot flashes…sitting in a small room with 5 women, all I could do was look at the tips of my shoes.  I cracked a small joke and everyone laughed.  They were uncomfortable too.

Three hours after we entered the clinic, we walked out hand in hand and I could recognize a little skip in my wife’s step.  “Are you okay?” I asked.  She smiled and said, “I finally feel like I’m in control.  I feel empowered”.  It was not the answer I thought I’d get, but I definitely could understand her thinking. 

We’ve still got a bit of a way to go, but this is a move in the right direction and quite possibly the beginning of the end of this chapter.  As we sat at home we discussed how surreal this all felt.  Cancer?  No chemotherapy? No Hair loss?  It just seems like we’ve been groomed to think hair loss, cancer and chemo go together.  Well, maybe this is just part of the new age of medicine. 

It sure works for me.

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, Route 53 - Life is A Highway

Life is A Highway

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“Today almost felt normal”

This morning raindrops turned to sunshine and we all got up and packed for a morning at the soccer field for our daughter.  Everything worked well as we got a good parking space in a difficult area, our daughter scored two goals, and we had a good time with the other parents.  Afterwards we came home, washed up and changed, and then went to the baptism of our friend’s adopted beautiful daughter.  Of course the usual questions came up about how we are doing and some of my best friends finally had the chance to see us for the first time in weeks.  It was good to just see them and say hello rather than talk to them on the phone.

Our life really had taken a detour.

We didn’t stay at the party long in order to conserve energy.  We both needed it as we fell asleep with afternoon naps before I had to gt up to get a long-needed haircut. 

While dinner seemed normal, it was anything but normal.  It was the first time she had made a meal in a month.  It cost her a lot of energy, but she did it (I did the dishes) and she was very happy to contribute to our daily life,  Tonight before going to bed with her normal dose of pain medication she said, “Today almost felt like a normal day”.  I couldn’t have agreed more.  I still feel like I’m tip-toeing and walking on eggshells to make sure she doesn’t get hurt or fall down, but we are slowly building back up to a comfort level.

We have three more consecutive Monday meetings with the plastic surgeon as well as our first meeting with the oncologist coming this week.  We are both a little nervous about that as we still haven’t heard how our oncotype scores have come out.

Right now the pain comes when she has been upright too long.  I don’t think this is going to change until she gets swapped out with implants.  It looks like we will be living with Vicodin and Adavan for a couple more months.  Hopefully we can both find more distractions to keep our minds busy over the next couple weeks.

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