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

Almost 2 Weeks Post Surgery – A Loving Fight with Breast Cancer

“Mom, You’re the MVP”

Ugh, they say that after two weeks you can drive and that after two weeks you get your drains out.  Well tomorrow is two weeks and we are on the brink.  It was Monday and I just couldn’t leave her a home.  I worked from home today in case she could get another appointment with the nurse.  The drain on her left side was causing problems again.  The drain was not keeping its pressure and was leaking again.  The gright side, the one with cancer, was draining fine and is now consistently under 20ccs.  Can we pull it out?

We got an appointment in the afternoon,  and took her in.  They replaced the drainage bulb on the left side and rebandaged her.  The nurse said that the right side looked okay and that we didn’t need to do anything.  We could come back Tuesday and remove the right, but the left side probably should stay in for another 2 days.  Ugh, we can’t come back to more days in a row,  We’ll just have to wait until Wednesday to have both drains removed.  She told us to take half a Vicodin before and then keep a half for later.  I hope it doesn’t hurt her that much.

Today after school when picking up our kid, our some came home with the class MVP award.  Something that designates our son as the leader of his 3rd grade class for the week.  He even gets a medal that says MVP.  He handed it to his mom without hesitation as soon as he saw her. “You’re the MVP mom, I don’t need to wear this.”

We sat in the front seat and touched hands.  Our son sat in the back as we drove to the hospital again for the 13th time in the past 60 days.  We are definitely fortunate.  This morning on the way to school I saw one of the other dads in the class.  It must  be one of his good days.  He’s been battling cancer in the pancreas and his brain for the past 4 years.  Yes, we are fortunate and we can’t forget it.

Well tomorrow is two weeks post-curgery.  it doesn’t look like tit will be eventful, but we’ll see.

2nd weekend after Breast cancer surgery – A Linear Life

“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.

5 More Days with Drains – Post Breast Cancer Surgery

“It ain’t over til it’s over”

Well today was our post -op visit with the plastic surgeon.  We did learn that an initial 150ccs were inserted and he put in another 100 today.  If chemo is needed he will likely be almost done with everything before then. 

It was the first time I’d seen him smile too.  We got to know him a little more as he fixed her dressings again and injected more fluid.  Luckily they gave us more bandages because the nurse did not apply the dressings appropriately and my wife was leaking vascular fluid.  When I got home, my wife asked me to reapply the gauze and bandages.  This was actually the toughest job yet.  We had just hit the weekend and hopefully I did it right or someone would have to take my wife back in this weekend.  It was frankly a little too close  for me.

We still were not ready to remove the drains and they recommended keeping them in another 5 days. Ugggh.  I saw the sadness in her eyes.  I know they are uncomfortable for her and when they tried to push the date to next Friday I knew we had to fight for a Wednesday appointment.  I guess the fighting isn’t done yet.  It ain’t over til its over I told her.  She apologized that I still had to drive her everywhere and I told her no apology was necessary.  How anyone does this alone is just brutal,  She needs to be able to get out and become mobile again and I know she is getting antsy.  The drains are definitely not pleasant to look at for sure and cannot be that comfortable.

We at least have our next three appointments settled for the plastic surgeon, the removal of the drains, and the initial meeting with our oncologist who is supposedly one of the best nationally so we feel very fortunate that she is able to take our case.

Other than the darned trains and discomfort she is feeling okay after today’s procedure.  i guess that is easy for me to say, but I’m sure going to be glad when the coming week is over.  I know she is thinking the same thing.

Another Good Day – Our First Look after Breast Cancer

“Walk, don’t run. Listen, don’t talk”

Day 9 after the surgery and we had our first visit with the breast surgeon and the head nurse.  Since it was only my wife who had received the pathology news over the phone, it was good for me to hear her voice and discussthe outcome.  She was very upbeat and happy to report that she believes they caught it early although she will want to go in again and remove more tissue as she believes that the tumor was a little too close to the skin for her comfort.

Although she said she’d leave it up to the oncologist, she says that there is a possibility that they might recommend some chemotherapy treatment.  That would start early October but we’d need to get a genetic test back first as well as have an initial meeting with the oncologist.  We set the appointment today for 3 weeks from now.  I took very diligent notes as we listened.

While we waited in the room for the surgeon to come in, my wife made a comment to me about her surgery that shocked me.  My wife mentioned a slight procedure that she thought was made that I had no idea about. I told her that I never was told what she thought happened was going to happen.  This was a major deal.  Well I was right, it did not happen.  My normally solid wife was totally wrong, but what scared me most was that she had been assuming something else was going to happen in surgery that didn’t happen.  I can’t go into detail, but it was like being told that you were going to have a simple bypass surgery but actually got a quadruple bypass surgery.  She was quite relieved to be wrong, but I was definitely seeing how her mind was not there.  One more reason why every cancer pateint should have someone go to appointments with them to take notes.  I reminded her that she needed to listen better and always ask for clarification when unsure.  We both have a lot on our minds these days and while small details might be forgotten, it is definitely not good to go into a surgery thinking the docotr is going to do one thing and find out that they did another.  Even the doctor looked a little puzzled when my wife asked about that part. 

Well the big relief was actually seeing the dressings taken off and replaced with clean ones.  We were both worried about being overwhelmed by a sight that we couldn’t handle and asked around if people thought we should look.  I didn’t want my wife to look by herself and get depressed.  I wanted to be there.  Well as we both covered our eyes as they changed the dressings, I was asking the doctor some questions.  When she moved, I caught a glimpse.  My wife saw me stop talking and noticed I was staring.

It wasn’t anywhere near what we thought it would be or look like. Again we were quite relieved and everyone had a good laugh.  Although there was some black and blue bruising, you can tell that a nice job was done.  My wife later said it was nice to see her”girls” were still there.  I guess the analog I had been giving my son of a flat tire was pretty accurate, but that the tire was completely deflated.  On the way home we had a good little tearful hug and I got a big thank you for being there.  It was a tough appointment made very easy.

The drains and her chest pain is starting to become bothersome.  I reminded her that she needed to rest.  Walk, don’t run.  The more rest she gets, the less fluid drains and the faster she will get those drains out.  They didn’t take the drains out today but they might take them out tomorrow.  That would be very nice but it is still a little hard to tell.  The appointment is first thing in the morning, but I’m guessing we’ll need to come back next week to have them removed.

Tomorrow – seeing the plastic surgeon again.

Keeping a Good Woman Down – 8 days post Breast Cancer Mastectomy

“Lay Low, people might think you are back to normal”

My wife’s drains are down to about 30ccs a day and it really varies based upon the amount of movement she has in a day.  She has been getting antsy and everyone keeps remarking how they are amazed to be seeing her sending tons of emails as always.  I also seem to be getting more phone calls from my wife who is supposed to be laying in bed and resting.  She spent one day talking on the phone for 3 hours and her drainage went up. 

Today I came home to find her having taken out all the trash, done a couple loads of laundry and sent out bunches of emails as well as watered all the flowers that she had received.  I told her if she didn’t cut it out I was going to tell everyone she was fine and they didn’t need to send meals or help anymore.  They say it’s hard to keep a good man down.  It’s worse with women.  I say that kiddingly of course.  She’s just itching to get out.  I pampered her tonight with another bathing.  It’s our alone time after the kids go to sleep.  Yep, just lean her back over the tub and give her a long shampoo and conditioning.  I could see her finally relaxing and just closing her eyes.  Yep, that’s how you keep a good woman down.

She’s still worried a little about losing hair from chemo but some friends have mentioned a shampoo that is supposed to help you not lose your hair.  Me, I’m concerned about her bandages and being afraid to look at ther chest.  We’re also wondering about that first bill that is going to come.   Our plan pays 90% of the bill but that will still leave us with a large bill to pay.  Now they are asking if we would like an ONCA which judges your possibility of recurrence.  The problem is that insurance pays very little of this $3500 test.  All I know is that my MIL had this surgery 25 years ago and is still cancer free.  That’s a good enough test for me, but it is her decision.

Tomorrow is the visit with the breast surgeon and she’ll go over the pathology report with us.  She’ll also recommend an oncologist for us.

Tonight we had our first family game night in a couple weeks and the kids really enjoyed it.  We forget how sensitive they are and we need to maintain our focus and keep them engaged  I told my wife that the kids are the main healing point for us and they are picking up on every vibe we give them.