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Breast Cancer - A Loving Fight

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

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“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.

Breast Cancer - A Loving Fight

Courage and Connectedness – One week after the mastectomy

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“It’s all about Courage and Connectedness”

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

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

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

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

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

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

Breast Cancer - A Loving Fight

6 days later – Trying to resume activities (training wheels)

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” I am superwoman” – Alicia Keys

Drain check – 30ccs one side, 40 ccs the other

Today was the first day back to a normal routine or as normal as we can have it.  I went back to work and took the kids to school (normally she does that).  I still got to work early and tried to bury myself back into a routine.  It was hard not to think about my wife alone at home.  I left her with everything she needed at a low level and poured out heavy items into smaller containers.  Shwe was fine and said it felt good to be independent.

My mother stopped by to help her with lunch and the kids were picked up afterschool for playdates.  We had an old family friend come by to help with dinner and getting the kids ready for dinner and get their homework done.  it was an exhausting day for her and she admitted to being lonely and having tears in reading all the well-wishing emails.  Unfortunately I had a late night meeting  but stopped in or called several times to check in with her.  I drove her car to work today and the CD was set to Alicia Keys singing “I am superwoman”.  My wife had been playing that over and over again in the car to psyche herself up prior to surgery.

I am hoping that on Thursday she’ll also be able to get her drains removed.  That will help allow her to drive again.  We’ll probably let her test her mobility on the weekend and see how comfortable she feels.

Today was a bit of a training wheels day for all of us.  Could she handle being alone.  Could I get my mind back on work?  Would the kids be thrown for a loop with a change in the schedule?  I don’t think we passed with flying colors.  We’ve bonded so well as a family over the past several weeks that being apart was hard for us and the kids.

It might be a little too early to try and get back to normal, but we will try.  We aren’t ready to take off the training wheels.  And that’s okay.

Breast Cancer - A Loving Fight

Hitting the Wall – First Weekend of Caregiving

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“What’s a woman got to do to get a good pedicure?”

As part of the sandwich generation that has to take care of not only our spouses, but our children as well as our own parents, we are often being stretched beyond our limits.  Having a father who suffered a stroke and for the greater part of ten years survived with a severe case of memory loss and limited mobility as well as mother who had breast cancer, you’d think that this would be a task that I could be up to.

Well it finally caught up with me.  After taking my son to his soccer game on Saturday morning, I hit the wall with the sniffles, sore throat, cough and all over body aches.  My head was in a fog.  I had overdone it.  I needed rest or I wasn’t going to do anyone any good.  5 days of caring for a family of four both emotionally and physically was more than a drain.  I felt even a alight pang in my chest.  no time to have a heart attack!  Even with all the help with friends and family there is only so much you can do.

Make the lunches, pick up and drop off the kids from school, pour liquids for your spouse, wash her hair (if you really love her you’ll give her a pedicure), empty her drains, warm up pre-made dinners, do your own regular business work, do the laundry, do the dishes, go to school meetings, take the kids to gymnastics and soccer practices,…it is all too much to remember and then take care of yourself.

Is it worth it?  Getting sick? No.  Making sure your family feels normal and secure?  Yes.  I’d do it all over again if I had to, but wouldn’t wish this past week on anyone.  And I don’t even pretend to think I have it as bad as others. I am inspired and honor all those caregivers out there.   But this is a reminder for all those out there to take care of yourself as well and get lots of rest.

I slept in today (in another bed from my wife so as she wouldn’t get sick too) and it did me good.  I felt a 100% better although have a slight cough and scratchy throat (good enough to cheer our 49ers on to victory).

The good news is that the drains are emitting less fluids.  The first day we were at 70ccs and we are now down to around 45 ccs per day.  We’d like to get to 30 ccs. 5ccs is equal to about 1 teaspoon.  I gave her a second bath (kept the bandages/dressings dry though as we were told to keep them from getting too wet.  We also went for a walk around the block.  She said she felt okay except only for some tightness in the middle of her chest.  She is mostly down to taking Atavin and Keflix for now.  She has halved her dosage of Ibuprophen and is totally off of the Vicodin.

We had our family meeting tonight to confirm our arrangements for the week to make sure we are getting to and from school okay for the week and making sure the kids are mentally okay.  I’m going to need to check myself tomorrow.  Leaving her to herself worries me although I think she’ll be fine.  My mother will check with her during the day to make sure she is okay and a family friend ( who sometimes babysits) will be over to have dinner with us.

This week we have our first post-surgery appointments with the physicians to make sure all the healing is going well and maybe get our pathology report.

Let’s keep our fingers crossed it all comes back clear.

 If you want reading, check out an insert from today’s Parade Magazine Insert ( a bit of an advertisement, but relevant)

Breast Cancer - A Loving Fight

3 Days post Breast Cancer Surgery – A Loving Fight

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“Let’s stop, smile and thank everyone”

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

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

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

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

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

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

Breast Cancer - A Loving Fight

2 days after Breast Cancer surgery – Inspiration and Perspiration

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“From Patience comes Power”

We are officially 2 days post surgery and my wife was taken home 25 hours after her surgery was complete.  She was itching to go home to her own bed.  When transporting the patient home, it is always a good idea to bring a pillow to cushion against the seat belt straps.

We were sent home with two vials to measure drains and lots of medication: Vicadin, Ibuprophen, Atavin and Keflix.  They are lots  to take and the Vicodin dosage we already cut in half as it was just too heavy of a drug for her.  We got her home and then brought the kids in one at a time to see their mother.  Our son shed a tear for the first time.  When later asked if he was sad, he just said he was happy.  I think seeing his mother looking normal in bed and seeing that she was okay was a big relief for him.  Our daughter was next and gave her mother a dainty hug.  She was surprised to see her out of bed, but I think that once again it helped relieve the tension and worries that our kids had.

Meals have been great and flowers have been plentiful (almost too plentiful as we have run out of vases).  I do recommend you tell people do not buy flowers and rather send a donation to a cancer cause such as standup2cancer.org or the Susan G. Koman Foundation.  The letters from all the women have been incredibly uplifting for my wife.  Inspiration and Admiration are the words most used and they are appropriate.  I am definitely inspired by any cancer survivor.  Although every case is different, the stories I have heard along the way have touched me and now living with a woman who is surviving makes me so proud.

Keeping my wife down has been the hard part as I remind her that she is the patient while I am home.  Although she is feeling the energy to get around, I want her to conserve it.  Patience is what she needs.  My duties as her personal nurse today included washing her hair, stripping and dumping out her drains, and answering all calls and doorbells.  She is currently draining 70ccs of blood per side and needs to be draining 30ccs or less for her drains to be removed.

Most importantly my wife does not appear to be in much pain although she is suffering from some discomfort.

Breast Cancer - A Loving Fight

Day After Surgery – Breast Cancer Recovery

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“Stop, rest, and recover like a normal person.  There are no heroics the day after.”

The surgery went well.  First review of the nodes appears to be clear and we will be waiting for pathology reports over the next 10 days.   It was great news to sperad around but we are still being cautious and not letting our guard down.

Because my wife has had a history of nausea with pain medication, they brought her out of her sleep very slowly.  They kept her in the Post Surgery Unit for almost two hours and then brought her out to be brought to her private room around 3pm.  Surgery ended around 12:30. 

Having a sister-in-law as a nurse was very helpful in helping her to stay rested although my wife was already ready to run laps around the hall and as usual was chatting away.  That was until dinner when I became the clean-up guy as she couldn’t hold her food down.  They had her on Dilaudid and Vicodin, but it really was still the anaesthesia wearing off that was making her ill.  She couldn’t hold down chicken broth or crackers.  They also had her doing breathing exercises to avoid pneumonia.

She isn’t in much pain in her chest but rather is having some headaches probably from caffeine withdrawal and lack of food.  We are off the drip and are now on Ibuprofen which she will be alternating with Vicodin at home.  We are down to probably one vicodin pill instead of two.

The hard is getting my wife to shut it down (and up).  She’s running around the room one minute and getting sick the next.  It is now noon and she is antsy to get out of here, but they aren’t going to let her go until after she shows she can eat something and hold it down.  My take is that because she is small, the drugs are making her loopy, so although she feels well, she is probably slightly overdrugged.

I do see the excitment in her now that it is over.  That is a great thing for me.  My biggest concern was her mental stability and her ability to deal with the loss for the period of time it would take for her to get back to normal.  She seems to have her fight back and is ready to go.  I just need to have her rest and recover for now.    One thing I did get her today was the SOFTEE, a product that has lightweight breast forms you can easitly put into place.  You can also pull it on over your legs rather than over your head and it has a nice ROO pouch that you can use to place the drains in. and not let them hang.

It looks really comfortable and I think it will be well worth it.  Make sure to get the Softee Two and not the original which does not have the Roo pockets.

Hopefully we’ll be able to get her home in the next coiuple of hours and

Breast Cancer - A Loving Fight

The Morning of Breast Cancer Surgery – Now the Wait

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“The weather isn’t nice, so I wouldn’t play golf anyway”

The alarm went off at 4:30 and I jumped out of bed to take a shower quietly while she slept another 20 minutes.  Other than the early morning wakeup call and the lack of food (no eating before the surgery) this was our normal routine.  I checked a few emails, put the bags in the car and read the paper while I waited for her to come down.  I smiled at all her last minute things she wanted to get done – mail bills, throw her iPod in the overnight bag, make sure the kids had all their stuff ready for school.  She grabbed her pillow and took one look around the house.  I caught her crying and didn’t want to look or I’d start crying too, I looked out the window and said the only words I could think of to make her smile, “The weather looks gloomy, I wouldn’t be playing golf anyway”.  I got a kidding hit to the abdomen and turned to see her smiling.  We were ready to go.  Check in time…6am.

While I went to the mailbox she waited for a second in the lobby holding her pillow.  She ran into her surgeon who gave her a hug.  She didn’t recognize her at first holding a flowery pillow and told her, “you looked like a little 15 year old girl”.  Our surgeon is well respected (10 years of practice and a professor at one of the best teaching hospitals in the country) and like most, she has her idiosyncrasies when it comes to bedside manner, but that I can live with.

Upstairs we got checked in and my wife undressed and we put her clothes in the bag they provided.  Reminder to some, leave your jewelry at home (I pocketed her wedding rings).  If I didn’t know my wife’s exact weight by now, I got it told one more time as she got on the scale and we signed more consent forms. The administrative nurses walked off with her clothes and pillow (I kept her toiletry kit, cell phone and other valuables).   The first doctor to some in was the plastic surgeon.  He marked her body up like a smiley face and was really pragmatic.  You definitely have to have vision.  You could see his mind working like an artist as he marked up her body.  Next was the anaesthesiology team.  They once again confirmed my wife’s allergy to Codine.  Last was the main surgeon.  Always nice when they come in fresh faced and ready to go even at 7am!  She said all was on schedule and spoke with me about when she’d come out to tell me how it went. 

They then gave her the cocktail and within five seconds my wife was loopy.  The cocktail has an effect of amnesia which will relieve any trauma in the mind.  She was already laughing within 30 seconds and kissed me one last time before they wheeled her off into surgery. 

I can’t believe that was two and a half hours ago.  Surgery is half over already, I am assuming, and they are on to the second breast.  I did go to move the car and drove a few blocks home to make sure my mom was okay and that the kids got off to school without any hassle.  She said they didn’t have a clue as to the fact that their mother was off to surgery this morning.  At least they didn’t say anything, but we think our son might know.

As they wheeled her off, I called her parents to let them know that she is off to surgery. Her father says he’s proud of her strength, but I’m sure her mother is worried being far away.  She got a chance to speak to them yesterday, but waiting doors away is probably no easier than waiting 3000 miles away.

I will let them know this afternoon when I pick them up from school that mom is okay and will be gone just one more night.  Whew..now the wait continues.  Thank heaven for internet access and Starbucks coffee.

PS, I do think it ironic that as we spoke to the surgeons this morning and they asked if my wife had any reservations, the TV overhead playing in the room announced that Lance Armstrong, a cancer survivor was announcing that he was un-retiring.

Breast Cancer - A Loving Fight

The Last Day – Preparing for Breast Cancer Surgery

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“I’m with you, you’re stuck with me”

The day before surgery there is nothing else you can do.  I think I had more questions than my wife.  You just go through the procedures at the hospital and then learn about a million more things about the surgery.  The surgery is tomorrow at 7am.

We had three appointments today.  Good thing I went.  It was just a whole lot of information and stuff that you wouldn’t want to go through alone.  I was sitting there looking around in the waiting room noticing 20+ women by themselves and only two husbands.  I couldn’t imagine leaving my wife to do that without me there.  The first appointment at 9am was to get the blood work.  It was also a nice meeting with the anaesthesiologist and nurse practitioner.  It was a very calm and relaxing meeting in which we made sure there weren’t allergies or history of complications.  They give you a special soap to use the night before when you take a shower.  They also recommend no eating after midnight and to take an Adavan before you go to bed and when you wake in the morning to take the edge off.  When we get there they will give you a cocktail to get you drowsy and then make some markings on your body where the surgery will be.

The will then take her to surgery where she will be given Propaphal (sp?) which has basically replaced the truth serum anasthesia that they used to give.

At 11am we had our quickest appointment of the day, the visit with the nuclear medicine team.  They injected her directly where the cancer is with a radioactive injection that will will follow her drainage to her sentinel lymph nodes.  This is so the surgeon can use a Geiger counter type of device to find the nodes and take them away for a pathology study.  Within 15 minutes they will know if there is anything in those initial nodes and if they will have to take more nodes.  This nuclear medicine has a half life of 6 hours so must be done the day of or the day before the surgery.

At 1pm we got the final meeting out of the way.  The pre-op appointment with the head nurse.  It was informative including drainage information, pillows to take home, samples of the expanders that will be inserted and finally samples of saline and silicone breast implants.  Pretty amazing I must say.  I think I had more questions than my wife, but the advice was all good.  One Big piece of knowledge.  My wife’s surgery is called “A Total Skin Sparing Mastectomy” , so there you have it.

A couple of good reminders:  No ice to reduce swelling!  Observe the 90 degree rule and not raise your arms above your head, and don’t worry about showering for a couple days after you get home.  Also, you are allowed to take Tylenol with Adavan.

It was a draining day and despite all our preparation, we learned so much more.  There is an information overload going on and my mind is racing.  Fortunately she is already asleep.  Tomorrow will be a big day for both of us.  I just hope I don’t forget anything last minute!

Breast Cancer - A Loving Fight

Keeping the Routine (The weekend before breast cancer surgery)

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“Keep your game face on” – today’s note to my wife

The weekend before the suregery (3 days and 2 days) before the surgery and we are trying to keep things normal. We lost our main distraction when my wife finished her massive project.  It was such a blessing to have that project to keep us focused and distracted on a big task at hand.  But now it is gone and we have only a couple of days to churn through.  A whole weekend.  So what do you do?

Day 1 of the weekend was the beginning of soccer season.  Although the kids know mommy is going to have surgery for cancer we are not telling them the exact day so that they don’t get too worried.  That said, they just know things. They can seen the tension and the irregularities in our life.  Our son played a nice game of soccer and for once his mother wasn’t chatting and saw him score.  A nice goal in which he kicked in a rebound reflection off his own shot.  He was so proud of himself and when we congratulated him later, he said, “That was a goal for you.  A goal of determination”.  Darn kids, they sure can make you cry.

As I said, the goal was to stay the course for our kids so we had a couple of boys over to help celebrate our son’s birthday and make him feel like all is okay.  They giggled their way to sleep.

Sunday was more prep and cleaning day.  The things that I don’t do most of the time and won’t have time doing: 1) Laundry, 2)Watering the garden, 3) Answering all of her well wishes emails.  I took our son to the football home opener.  The 49ers slogan today was “Get your Game Face on”.  Well we adopted it in our household.  It is how we tackled the day getting everything done.  Our family was a model of efficiency.  We planned also to have a nice birthday dinner for our son and his uncle with the immediate family.  The dinner was for them but also for my wife to get her mind off things.  A quiet dinner at home was not what we needed.  It was also a time to mentally walk through the logistics of the next two days – Who is picking up the kds?  Who is going to be there during and after the surgery?  Who is going to be with the kids when I’m at the hospital?

We’re about as prepared as we could be at this point.  99.5% prepared!  Of course my wife is pounding out emails and running around making the kid’s lunches for tomorrow as I type this out.  I think she is starting to drive me crazy with the last minute reminders.    I just looked over at her and smiled.  She got the point…Game Face…yes, put it on and keep it on.

We’ve started a nightly ritual of checking in with each other to see if we are both okay.  Still anxious?  Check.  Had a good laugh today? Check.  Had a good cry today?  Check.  Learn something new today? Check.  What a day and weekend this was.

Tomorrow- Preparation day including Pre-op Lab work, Nuclear prep, pre-op with the RN