What Should I Buy Before A Mastectomy?

There are as many different breast cancer stories as there are women behind them.  One dreadfully hard aspect of being diagnosed is deciding what course of treatment to pursue.  Most of us aren't informed enough initially to make a solid decision without diving headfirst (with all the free brain space our shock, anger, grief and worry allow, hah!) into a boatload of medical research and anecdotal evidence.  

When I decided a bilateral mastectomy was right for me, I started doing what I do best- preparing.  Now I'm on the other side of this process and wanted to offer this list as a guide for patients, their friends and caregivers at home to preparing for a mastectomy.  Use it as a starting point to find what will be most helpful for you in your situation. 

What Should I Buy Before A Mastectomy?

In addition to making sure you pack personal care items for the hospital like face cleansing cloths, chapstick, cough drops, good socks, etc... and making sure you have a good water bottle with a straw for use at home when you are released from the hospital after surgery, consider these items and whether or not they might help you: 

What I used for sleeping:       

     

These sleeping wedges, which I previously didn't know existed, are worth every penny.  I slept very comfortably and, considering the circumstances, that is saying a lot!!  They made it possible for me to get into and out of bed independently pretty quickly.  Now that I don't need them anymore, I have been able to loan them out to women I know that are prepping for mastectomies.  They have also been handy when one of us has a cold and needs some overnight relief from the drainage! 

What looks really cool for sleeping and might be less shifty:

The Bed Wedge:

   

You need a plan for your drains during showers:

One great, cost-effective tip I didn't find until my drains were out was to simply use a lanyard around your neck and use safety pins to secure your drains to it.  Because I didn't have that idea, I purchased a neoprene drain holder from Amazon. 

   

These bras worked well for me for a long time until l could handle a back closing sports bra again:

 

This is a great bra too- it closes in the back (so it's not for immediate post-mastectomy use) but later you can adjust the straps easily from the front so that helps a lot if you have asymmetry during the tissue expander phase:

When you start to drive again, it is so much more comfortable, and protective for surgery sites, to use a soft seatbelt cover and/or a small pillow against your chest like this:

 

I did not have these heart shaped pillows but many women swear by them for comfort during recovery.  They tuck in under their arms to give a nice soft resting spot between their body and arm.

 

I highly recommend stocking up on oversized button up flannel shirts; I lived in them for weeks!!  They were warm, easy for caregivers to help me into and out of, and eventually easy for me to get on myself.  Another great thing to utilize in the early days is any zip up hoodies you may already own that have pockets on the inside to hold your drains!

If you're in the Kansas City or St. Louis areas, Healing Chair is a wonderful organization to look into.  They will deliver to your home a recliner that you can easily get into and out of, FOR FREE, and then pick it up when you don't need it anymore.  Definitely a service to check out if it works for you geographically. 

In the interest of being thorough, I am adding this link to a store in Kansas City that works well and easily with your insurance company should you need any kind of compression garment (after having lymph nodes removed): Biofeet.  Biofeet is where I was fitted for my compression sleeve to prevent lymphedema with air travel and I'm sure there is a medical supply store that will do the same in most major cities.  All they needed was a prescription written by my doctor for the sleeve and they worked with my insurance. Very professional and easy and I liked being actually fitted for a sleeve rather than randomly choosing one online.

Please, please, please do not hesitate to email or call friends, or friends of friends, with questions.  Seriously, if they have just been in your shoes staring down this surgery and know the tornado it turns your brain into, learn from them!  I had several women to email and I didn't hesitate to ask any little thing that popped into my head and they all answered frankly and I SO appreciated that.

During my reconstruction process, I found this blog written by a woman that chose to have a prophylactic bilateral mastectomy due to her strong family history of breast cancer.  I think she does a thorough job of explaining the reconstruction process so I'll link to it here because reading about her specific case might be of interest to you: North Carolina Charm.  She had her procedure in the last few years, has two young kids and I think it is really encouraging to see how fast she bounced back. 

Another great resource with helpful photos and a good dash of humor: My Breast Choice.

{Celebrating 2 Years as a Cancer Survivor}

October 21st, 2017 marks two full years since I called the Goppert Breast Center in Kansas City to inquire about my biopsy results and received my breast cancer diagnosis.  It was an unbelievable day followed by a very long 14 months of appointments, procedures, surgeries and treatment.  I'm thankful every day for the gift of exactly that- a new day.  Life goes on but not without the backdrop of being a survivor.  For me, it's a backdrop that allows for good perspective and a lot of gratitude.  I don't really worry at this point about recurrence because it feels best to assume (and is statistically most likely) that I will never have cancer again.  I used to be more of a worrier but have let much of that go because, as they say, it robs me of today's joy.

I continue to passionately promote 3D mammography for women in their early 30's and annually thereafter.  There is just no good reason not to screen for a cancer that 1 out of every 8 women will get in their lifetime when survival can be so close to 100% with early detection.  So many women I know, even friends of friends, got their first mammograms in the months after my diagnosis.  It was such a brave decision they made and I hope that every fall or winter they will continue to track down a facility with a 3D machine and be diligent in screening for this very common, very treatable cancer.

I feel great these days and have a lot of energy!  So far, I've kept my hair short and love it.  It's just so easy to deal with when it's barely there!  The impact of surgical menopause at 36 is not entirely benign so I continue to deal with hot flashes and I'm trying to find a good balance of supplements to support my overall health. The menopausal metabolism is no joke so I find myself fighting weight gain but I'm working with a new doctor on that and will hopefully have things under control soon or at least a good plan to move me in that direction.

We will celebrate as a family with a night away from home to just enjoy being together without anything competing for our attention.  Cancer and all, I fully recognize what a sweet middle spot in life Joe and I occupy right now.  We enjoy the daily company of our kids still at home without having to worry about them out on the roads driving or off in another city attending college.  We're both healthy and fit; able to do all the things our hearts desire and excited and optimistic about our future and the future for our children.  It's just a really happy time and I'm so, so thankful for it.

Update 30

Update 30

Long time, no update!  

When we left off two months ago, chemo was finished, my eyelashes and eyebrows had fallen out, my ovaries were about to be pulled out and reconstruction was starting back up with my plastic surgeon.  I'm pleased to report that it was only a matter of days before my lashes and brows started to grow again, and they came in nice and full.  The laparoscopic surgery for ovary & tube removal was quick and easy, as promised, pathology reports on them were completely clear and now there's no way for them to cause any trouble.  I am almost 2 weeks out from the final surgery in the reconstruction process and I feel really, really good.

Now I'll start Tamoxifen again (daily oral medication that blocks estrogen receptors), continue with Herceptin infusions through my port every 3 weeks through the end of 2016 and have 2 more echocardiograms to check my cardiac function and make sure the Herceptin isn't causing any heart damage.  So far so good on my heart- thank goodness some part of me knows its job and does it well without interference!  I'll probably finish Tamoxifen in 2026 so don't hold your breath for that update. :) 

We have kept high spirits throughout and we're ever so grateful for all the love and support that has flowed generously our way during all of this.  We're immensely thankful for the talent and expertise of the medical professionals we're working with and we couldn't have done it without my parents right behind us every step of the way.  I am so proud of the women I know that have made the brave, inconvenient and uncomfortable decision to get a mammogram in any of the last eight months; over 20 friends of mine have gone and 2 have found tumors.  1:8 women seems unbelievable but it is REAL, folks.  I hope they, and any women you know, love or work alongside will continue to be scanned.  Choose a breast center with a 3D machine.  Pay out of pocket (~$130) if your insurance won't cover it.  Go every year.  What a victory for oncologists, women and their loved ones if every breast cancer patient could start treatment no later than Stage 1.  

​

I am losing track of how often this is the scene. Joe at my bedside in pre-op, all my belongings in a bag at my feet, warm blanket draped over me and a big bruise forming under the surface around my IV site. Thank goodness for him and his quiet strength and unconditional love.  Eight months in, our family is tired of appointments, procedures, surgeries and careful hugs.  The future is bright; I will rebuild my strength, more of our time will feel like our own and we will eventually get back to the "aggressive hugs" that our boys love…the kind where we squeeze super tight "to let the love really seep in."  

I can't wait. 

Update 29

Update 29

SEVEN weeks have passed since my last chemo treatment!  

My energy has come back slowly and I have worked up to walking over 3 miles nearly every morning to try and build back some strength.  My hair- a lot of it gray!- has been growing back in nicely.  I was surprised when my eyelashes and eyebrows fell out 5 weeks after chemo ended but have since found out that timing is pretty normal. (FYI, it turns out eyelashes really DO block a lot of dust and debris and protect your eyes.) I still have a lot of bloody noses and I'm having some serious heartburn that I didn't experience during chemo- all part of my body trying to right itself. 

Over a month ago I started taking Tamoxifen to block estrogen receptors in my body. This is a drug I will likely be on for 10 years. True to form for me, the drug led to 5 ovarian cysts right off the bat. My organs seem to always be up to the challenge of keeping life exciting.  I felt them (it's an extremely sore feeling) and went right in for a sonogram with my ob/gyn to measure their size and get an assessment.  We decided that taking both ovaries out of the equation is the best course of action, so an oophorectomy (a short and sweet laparoscopic surgery that sounds like it was named by Willy Wonka) is coming up in two weeks.  Recovery should be swift from that (aside from the small detail that I will be thrown into menopause at 36 years old, hah!) and things should stay on track with reconstruction. 

I've been meeting with my plastic surgeon in Kansas City every week as we prepare for the second reconstruction surgery, yet to be scheduled but likely in June.  I found a blog written by a woman that chose to have a prophylactic bilateral mastectomy due to her strong family history of breast cancer (more and more young women at high risk are choosing to do this and virtually eliminate their chances of getting breast cancer).  

I think she does a thorough job of explaining the reconstruction process so I'll link to it here for anyone wishing to understand the process better: North Carolina Charm

It has been wonderful not being on chemo and only needing to visit the oncology office every 3 weeks for Herceptin infusions. Cysts and tissue expanders are more than a little uncomfortable, but they're not excruciating and day by day I'm closer to being done with both so thank goodness for that. 

Hopefully I can update you one more time in the middle of the summer to say I'm practically done with it ALL! 

Update 28

Update 28

Chemo infusions: 10 down, 0 to go

After communicating with my oncologist yesterday, I went in today sure I would have 1 or 2 chemo infusions left but it was decided that we aren't going to push it any further, so I'm done!  

I did receive Herceptin today, which by itself takes about 1/3 as much time.  I will have Herceptin next Tuesday as well and from that point forward my Herceptin doses will spread out to every 3 weeks through the rest of the year.  I'm so glad my port doesn't give me any trouble but I will not be sad to see it go in 2017!

Now I wait for my body to get back to normal and then reconstruction picks back up again about a month from now with at least one surgery this summer.  

This is it for weekly updates!  I will touch base down the line so you know how I'm doing and that subsequent surgeries have been successful. 

Thank you all so much for your interest and support.  I hope that you never have cancer in your medical file, I hope that anybody who does benefits from this many people rooting for them, and I hope my experience will stick with you as an example of the wonder of early detection and you'll preach (loudly!) the benefits from here on out. 

Update 27

Update 27

Chemo infusions: 10 down, 1-2 to go

Treatment yesterday went well and they did lower my dose by another 20%.  So far I've had 6 treatments with a full dose, 3 with 80% of a normal dose and now the latest one at 60% of a normal dose.  No decision on next week's treatment yet, we'll see how things go over the next week.  My symptoms unfold over the course of several days after treatments so we won't decide until next Tuesday whether to do more chemo or not.  

I need to really pay attention to the neuropathy and asses whether or not it's worsening but it's hard to tell!  Last week the numbness in my fingers progressed down from the fingertips to my second knuckle and the tip of my tongue went numb.  It was easy to notice a new area being impacted, but determining if the numb areas are worse is more subtle. 

Thankfully, I'm not in pain, with regards to the neuropathy or in any other way and I am so lucky that I'm not.  I am acutely aware that this chemo experience could have been so much worse, and it is for many, many people.  I'm weary but I am up for this 1 or 2 more times if that's what needs to happen. Early detection meant my tumor was really small and I was saved from needing multiple harsh chemotherapy drugs, radiation and the side effects patients suffer miserably with both.  Cancer isn't going away anytime soon but we are currently able to stop it in its tracks like never before, especially when it is found really early. Whatever cancer screenings your body qualifies you for- get them regularly! 

Update 26

Update 26

Chemo infusions:  9 down, 1-3 to go

Last week I explained that because of the gradually increasing neuropathy in my fingers, my oncologist was thinking we would lower the next two doses by another 20% and then stop at 10 chemo treatments instead of the original 12 planned from the beginning.  During the past week I didn't feel like the neuropathy progressed like it previously had each week (a tiny step worse each time); it seemed to hold steady and I had to be honest about that when meeting with Dr. Soule (whom I now affectionately refer to as Chemosabe) yesterday.  

The routine of investigate-->  evaluate---> revise the plan was established long ago in this process so it doesn't phase us anymore to think we know what's going to happen only to have it change. It's all tentative and that's okay because we know this leads to treatment that is tailored to my specific needs and that's just the kind of care I want. Instead of stepping down another 20% this week, we held at the same dose I had the last two weeks (20% less than I received the first 6 times) and I am not going into next week thinking it will be my last treatment. If things go about as well this week as last, we'll keep going towards the goal of 12 chemo infusions total. 

Whether I have 1, 2 or 3 treatments left, the end is close!  I have soft hair growing back in ever since the 20% reduction from the original dose.  As I mentioned, the neuropathy is unchanged.  My sense of taste has been compromised and very few things taste how they should to me.  I have developed a few mouth sores and my nose is bloody every day. My energy level hasn't been great over the last week but my parents are wonderful about filling in all the gaps; they get the boys to and from school, take them for haircuts, take care of them while Joe and I meet with teachers, etc…  We couldn't do this without them; we appreciate tremendously the luxury of having two additional adults keeping us on track.  It's still a roller coaster but we're all able to hang on for the ride.