All posts by erikhom@aol.com

Breast Cancer - A Loving Fight

2nd weekend after Breast cancer surgery – A Linear Life

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“My life seems so simple yet so complex”

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

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

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

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

Breast Cancer - A Loving Fight

5 More Days with Drains – Post Breast Cancer Surgery

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“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.

Breast Cancer - A Loving Fight

Another Good Day – Our First Look after Breast Cancer

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“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.

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