Category Archives: Breast Cancer – A Loving Fight

Our battle with breast cancer

Turning the corner – One Month after Surgery

“The Longest Month Ever”

I gave my wife a kiss and told her it has been a crazy month since her surgery and she looked at me and said, “Its only been a month?  Wow, it is the longest month ever!”  I agree that it seems like we have come so far in a month.

Things continue to evolve emotionally and physically.  Yesterday while at the clinic she ran into an old co-worker.  They hugged and sobbed as soon as they saw each other there.  They hadn’t seen each other in 7 years, but they had a new bond and have already shared their stories with each other as well as numerous emails.  Having someone she personally knows going through it with her at the same age is a comforting thing for her.  It’s all the little things now.  Even yesterday when the Plastic Surgeon stood back, took a look and said, “I think it will all come out nice”, she took a mental note.  “Nice” isn’t always the most glamorous of words to describe something in a positive manner, but it worked for her.

Today was also a day we had been waiting for.  She finally heard an indication of what the test results said about her chance of recurrence for cancer.  This is an important outcome as it indicated the type of treatment plan you should follow with your oncologist.  When she called me at work, I picked up the phone with trepidation.  It was like the day she called to tell me she had cancer and I rushed home.   Those aren’t fun calls.  The day she called to tell me that my dad wasn’t breathing was just the same.  As I picked up the phone she said, “I hope you are free on Saturday as you and your son qualified for the Northern CA Family golf tourney in the 2nd flight!”  It was good news!  Not the news I was expecting but it was great and our son was going to be happy.  We talked for a few more minutes and then she continued, “Oh and the Dr. wrote me an email saying my scores came back low for recurrence”.

First I was  happy and could feel her smiling through the phone.  Then the psychologist in me said, “Wait, she gave you news about a golf tournament before she told you about her breast cancer”  I asked her if everything was alright and she said she felt like she was turning a corner and ready to get through this thing.

We watched a 45 minute video tonight to help us with her decisions she is going to have to make regarding her treatments.  Is it hormonal therapy, chemotherapy, both, or none? The clinic is pretty hands off and likes to let each person make their own decision so it is good to get educated. I told her that I was pro-choice on this and I didn’t want my own feeling to get in the way if she wanted to make the decision alone, but it is hard to look at your own health as one big statistic.  We haven’t made many decisions without each other for 22 years and she wasn’t about to start now.

So the oncology meeting is in a couple days.  We think they are going to tell her chemo is not really going to be beneficial and that Tamoxifen a hormonal therapy treatment with side effects will be her best plan, but who knows.  It is more of a sit and wait game again, but this time the wait is going to not be so stressful and the next month will go even faster.

We’re a Family Again – The Highway of Life

“Let’s keep our batteries charged as things usually get worse before they get better”

Almost a month since surgery and we seem and more importantly, feel, like we can do some normal things again.  As we had no appointments this past week, there was nothing to break up our schedule and we had what we might term to be a “normal family weekend”.  As we sat around the table at our favorite sushi restaurant on Sunday night, we had our team meeting about what we had going on this week (playdates, practices, appointments, etc.) we reviewed the past week with our children to ask them how they were doing and what they enjoyed.  Our son said he enjoyed playing in his first golf tournament.  Our daughter said that she enjoyed “being a family again”.  When we asked what that meant she said she enjoyed going out to dinner, going to her soccer game, and even playing a family board game  with all of us present.

She was right.  It was the first time we had energy to do things together rather than split up or outsource parenting to our friends and family.  We were smiling and laughing again.  The sushi dinner was never mentioned as such, but it was our first real time we had gone out together in a month for a meal and thus served as a bit of a celebration.  We needed the break, the laughs, the down time and I think we really needed to lavish our children with much needed attention.

They have seen and heard so much and partly because of their naivety and partly because they are mature for their age, they were able to process their feelings. Unfortunately, I think it wore on them to see their parents not having the fun they used to have and seeing their mom’s sunny disposition remain sunny, but at a cost of her strength.  Our daughter’s comment raised some flags for us to make sure we focused on them during the coming weeks especially if chemo becomes part of the equation.

Today marked the third of 5 appointments with the plastic surgeon post-surgery.  He says she is progressing okay but we’ll have to see how things are going with chemo to know our full schedule.  We have our 1st appointment with the oncologist on Thursday morning so we are a bit nervous.  I just wish we’d know a little more before we go in the first time to meet with her.  She’ll definitely tell us about the Tamoxifin (sp?) but all we are worried nabout now is the Oncotype score reading.  We are bracing for her to tell us she will need chemo and agreed that we just need to get our batteries charged and braced for the coming months ahead.   It is just natural to assume things will get worse before they get beetter.  In a peverse way we both agreed that everything so far has actually not been as bad as we thought it would be, but we have run across some things we never thought we’d encounter.

On this highway of life, cancer has been more than a bump in the road, but  a very windy detour that we hope leads back to the main road and let’s us get back to destinations unknown with many life adventures to discover.

Life is A Highway

“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.

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

“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

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

“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.

Back to our regularly scheduled programming? Well almost.

“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.

If the boob fits, wear it? – Post Surgery Procedure

“You two are my favorite patients.”

Well our second visit to the PS was a little longer than expected.  More because he was busy.  By 9:30am he was running an hour and a half late. For the first time it seemed as we waited there that the patients all seemed older and more sick.  Many of them were asleep and to be awakened by the nurses as they were taken to the back.  My wife and I just held hands as we saw all these lonely people.  My wife later said that she was happy I decided to be with her as waiting in that room for 2 hours would have been real depressing although it is probably one of the more upbeat waiting rooms you could probably find in a cancer clinic with inspirational quotes from patients and pleasant music. 

Having visited the breast care clinic several times I have decided to contribute to their library of magazines.  Although I’m not sure many of the women want to read about golf, sports, photography or travel, I hope that the occasional husband or father or son who decides to go the extra step in this journey with their spouse, mom, or daughter can feel comfortable in doing so.

When we finally were called, Andrew, took my wife’s vitals.  He laughed and joked with us regarding my wife’s normally low blood pressure and how she wanted to be weighed on the “pound reducing” scale.  We actually notices one scale adds 5 pounds in the office.  Our respect for this office practice has grown so much.  While these physicians deal in a very “flashy” part of surgery, they have to deal with many real world situations that aren’t so glamorous.  Sitting in that room watching a 70 year old bald lady  walk in by herself in a very expensive suit, she still looked refined, but the sadness on her face was visible.  The chemo and the wear and tear of this journey had taken its toll.  When Andrew greeted her before us, he put on his best smile with a , “Nice to see you again, you’re looking strong”.  She finally emitted a smile. 

Our situation seems so minor compared to others and I’m sure emotionally seeing all of these sick people does affect the staff as well.  It did make us feel good though to hear Andrew say to us out of earshot of others, “You two are my favorite patients.”  Whether he meant it or not, we actually felt good that we were able to put a smile on his face.

As we waited another 20 minutes in the procedure room, the resident came in, then the fellow, then the nurse, then finally our PS.  My wife had forgotten her questions she had for him, but I was able to help her remember them all. It was good to ask.  They have so many patients it probably is hard to keep track.  We have to get another appointment so we will still need another 3 after the one we had.  That will make five visits post surgery.

He added another 100cc (total 350cc so far ) and gave my wife more recommendations for care and comfort.  My wife upped her dosage of her meds and felt much more comfortable to sleep and rest and was not awakened by the children this morning although she is still stiff.  The PS again was able to smile. He is such a serious guy, but even making him smile made us feel better.  He definitely had had a tough morning.  He had a better picture of where he was going with my wife and drew more pictures on her file.  He’s not a bad artist.  I think that is a good thing in his profession.  He told us enough to make us think we’ll have an exchange (barring chemo) sometime around mid-November. 

The real light hearted moment was when my wife asked him about implants – what kind, what size, etc?  He told her he won’t know until she’s in surgery again.  Depending upon the rib cage (the expander is currently sitting on the rib cage), any adjustments he decides to make depending upon what she tells him, etc. he will put what best works at that time.  When my wife asked him how he does that, he told her that they have this big storage room at UCSF just outside of the O.R. that has the largest consignment selection of implants in the US.  With the vision of this magical golden room full of implants my wife skeptically questioned, “Even more than they have in Beverly Hills?”  He proudly said that they have every imaginable size and selection readily available and approved in the US with more options than any other clinic in the country.

My wife’s eyes lit up, “So kind of like a shoe store, where you try on a few”.  She knows I hate shoe shopping.

He chuckled at the analogy, “Well we theoretically get one shot at this, so we try and get it right and there aren’t a selection of colors.  So if the shoe fits, that’s the one we’ll give you.  You might even have two different ones, but we try and match them.”  Great, we have an orthopedist and a comedian for a PS.

In the end the light conversation took my wife’s attention away from the growing discomfort that she was feeling in her chest.  She was too tight to drive home at that point, so it was fortunate I took her to this appointment. 

As a side note, my wife has had a cough almost since the day of her diagnosis.  The day the drains came out, it magically went away.  I always thought it might have been brought about by anxiety, but this almost proves it.  Interestingly enough, I think I developed a sympathetic cough.  My cough went away too.  I think last night was the best sleep we have had since this whole journey began.  Her chest still aches, but the exercises are helping and the higher dosage of pain killers is working.

On the way home, we decided that no matter if Andrew meant it or not, we would try to brighten the days of our medical team.  His comment of being his favorite patients meant a lot to us and reminded us that they are human beings too.  Each time we visit we would try and do something whether through nice conversation or a small gift of appreciation (more magazines for the waiting room, etc.) to let them know we care about them and appreciate all that they have done or are trying to do for us.  My wife reminded me that he referred to me as a patient as well and so did the PS.  Yep, we’re in this together.

Alright a Deep Breath and onto the Next Hurdle – A Loving Fight

“We’re in a good place but let’s keep on our toes”

And off she goes….I think my wife really is a new woman.  Although she has pain and deep discomfort from her expanders, her first full day without drains seemed to go without a hitch.  Although I still made breakfast and drove the kids to school, she had energy to go for a walk with our Principal’s wife, entertain my mother and sister who came by to check on her at lunch, and drive the mile to our kid’s school, read to our son’s 3rd grade class, and then make it home.  While still in discomfort, she said her energy level was more than back and all the exercise she had done to get in shape before surgery was a big help.

I sat at work worried and checking in on her.  I thought it was too much and stood at the ready in case she needed me.  I married a stubborn fighter.  She’s still soft inside, but she’ll fight when she needs to.  I reminded her that although she is feeling good today, the road is still long and we have some uphill painful battles yet to climb and we needed to keep on her toes.  That did it, I stepped over the line.  I needed to let her enjoy the moment.  Don’t rain on her parade, you fool!

The expanders though are our next hurdle and from what i’ve read the more they get filled the worse the pain  will get.  So although she says she doesn’t need me to take her there, I think I will just be there anyway to take her home just in case.  Funny we were so focused on the drains and then now our attention is on the expanders, the schedule for exchange and lastly the looming possibility of chemo.  It really is one step at a time.  While we are aware of each potential situation my word of advice is to cross the bridge when we get to it.  I think our physicians are amused by my wife’s lists.  My wife’s lists are famous in our house.  I don’t think there is a thing my wife won’t list.  I think our list of questions though will change from previous visits now that the drains are behind us.

Today she took her first shower and re-bandaged herself  Like many said it would, it felt good just tor un water all over her.  I think we’re going to have a water shortage here in California after that marathon shower.

One other note.  Sadly, someone out there on a message board thought it was “weird” that as a husband I was being an active information gatherer and was bothered by my being an active participant in my wife’s fight against cancer.  It really angered me and when I mentioned it to my wife, she gave me this big hug and assured me that many people don’t know what it means to have great support.  She’s right but I also think it is a sad state that someone would feel that there is some kind of perverted research that I am doing.  We’re talking about someone I love deeply and there is no end to what I would do to find out what I could do to help her.  I also feel saddened but understand that there are many out there who can’t feel open about what they share.

I also think she thinks it is weird mostly because I am a guy asking the questions as opposed to another woman . Many women ask questions but when a guy asks the questions she got scared.  This is sad because I think husbands need to be more active and help their wives through this.  The day will come when I will be in the hospital and I will need all of my wife’s support and I sure hope she can do for me what I did have been able to do for her.  People!  Cancer does not discriminate! Black, white, young, old, men, women, children….we need to fight the cancer, not the people!

Celebrate the Drains are Gone – 15 days post-Breast Cancer surgery

“Take Care of Your Body means Have a Nice Day”

And on the 15th day, we all sighed relief.  This morning we went into the hospital and had the drains removed.  They used Hurri-Caine spray to numb the area.  The nurse told my wife to breath deeply and as she breathed out the nurse pulled the drains.  First the right and then the troublesome left.  They were 6 inches in length each inside her and resembled long flat extension cords with little holes that the blood entered.  OIn the left side we saw that they were clogged and thus why we had leakage.

My wife said it truly is a relief.  She already seems like a new woman.  The laughing and giggling have started again.  She is still feeling small soreness and discomfort, but when asked to gauge her pain from a 1-10 (high), she said it was a 1.  This afternoon we took the first big step.  I had her drive to our kid’s school and back to pick up our son. She did it like an old lday with some soreness, but it made me feel good that she was able to accomplish this on her own. 

Ironically we ran into her surgeon at Starbucks on our way to the school.  She was surprised to see us out of context and glad to hear we were driving again.  “Just stay off the highways” she said.  Those in our neighborhood including the Principal’s wife were surprised and happy to see my wife behind the wheel again.  In fact, we are feeling guilty about all the meas we are still getting from our wonderful class parents.  I found that the other family which lost their mother to cancer is also getting meals prepared by the other families in our school.  How wonderfully blessed we are to be in such a wonderful community.

One of the funny things we all do is pick up the quirks of our parents and pass them on.  As my father was a physician and worked for the Department of Public Health in San Francisco during the height of the AIDs epidemic he used to always write notes and messages to us in our lunch boxes, birthday cards, etc.  They never said, “Have a Nice Day” or “We Love you”, or anything like that.  They always said, “Take Care of Your body”.  These notes continued onto college and even when ending a phone call. It was like the show “Hill St. Blues where the captain would say, “Hey…Let’s Be careful Out There”.

Dring my dad’s final months, we lived with him and I’m fortunate my children really got to know their grandfather.  One of the things they picked up was his silly phrase.  In honor of him we continue that phrase every morning.  The other day as I kissed my daughter and she ran off to class, she yelled “Take care of your body Daddy!”  A teacher heard the exchange and laughed.  I could only shrug my shoulders and smile.  The phrase was still embarrassing, yet so very important to our family.

As i mentioned, our life is one long race over hurdles and so linear that we just focus on the next task.  The next task is to deal with the expanders and the discomfort that will come as the expander pushes on the chest muscle over the next 2-3 weeks.

Tomorrow she beigns to spread her wings.

Two weeks post-surgery and it’s all about pain management

“Peace begins with you”

Stats: Drain emission: 20ccs on the left 15ccs on the right

Well today is about tomorrow.  The drains get taken out and there will be a great liberating experience for her.  Right now I don’t think I want to be in there when it happens.  It might send shivers up my spine. Maybe I’ll just put a magazine up to my face.   I know though that she will take half a Vicodin and hopefully not be in too much pain.  If that goes well, she should be able to operate “heavy machinery” by Thursday.

For me it will help me in body, mind and soul.  I’ve lost 10 pounds from this ordeal and I’ve cut my exercising way down.  The nervous energy and lack of sleep has been taking its toll on me.  I really hit back into the work groove next week with travel and a speaking engagement at a conference (oh yeah, I need to write that speech).

Tonight was back to school night for our daughter.  The teachers are very aware of breast cancer and proudly displayed their “Susan G. Komen” Race for the Cure shirts from this past weekend.  My wife is the class mom this year but couldn’t attend.  The moms aware of my wife’s situation understood but interestingly enough nobody else asked where she was.  Each girl leaves a message on the desk for their parents.  This year’s theme, “Peace begins with you”.  Our daughter wrote, “Peace begins with mom.”

These days it sure does.  And tomorrow mom will sure have some peace when those drains are removed.

Route53

http://route53.wordpress.com