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.  

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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.

Update 25

Update 25

Chemo infusions:  8 down, 2 to go?!!

Treatment #8 on Tuesday was hilarious because my friend Gina was in town to accompany me.  I talked so much and laughed so hard during the 3 days she was here that I am trying to rest my voice so my throat can recover!  I turned 36 on Tuesday and I know firsthand now how good a birthday feels after a cancer diagnosis; it was a privilege to celebrate it with my loving family. 

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Same old symptoms this week as last.  The neuropathy is still mild but not ever letting up and continuing to progress.  I'm having trouble gripping things, separating papers, opening packaging etc… In light of this, my chemo dose is being lowered by another 20% for next week, March 1st, and the week following that.  My oncologist in Lawrence feels like stopping at 10 treatments is probably the best course of action to avoid the neuropathy becoming permanent and that doing only 10 treatments instead of the original 12 planned won't compromise my outcome.  It looks like my last treatment may very well be the week of March 7th!  If this is the case, reconstruction efforts will pick back up in April and I'll most likely have another surgery in May or June.    

We have been dealing with this cancer nonsense since October and having the end of chemo in sight is a huge relief.  

I am more than ready to move on, but always keep in mind (when I'm reflecting on what we've been through and what is still to come) this line from Ralph Waldo Emerson "What lies behind us and what lies before us are tiny matters compared to what lies within us."  

Update 24

Update 24

Chemo infusions:  7 down, 5 to go!

My infusion yesterday went well and it feels great to be closer to the end of chemo treatment now than the beginning! 

Because my neuropathy has been persistent and progressive (although mild so far), my chemo dose was lowered by 20% for my 7th treatment and will stay at that lower dose for the next 5 treatments.  (It isn't worth risking permanent loss of feeling in my fingers and toes in my particular case because my tumor was so small at the time of diagnosis and chemotherapy was only indicated because of my need for Herceptin treatment.  If my cancer cells had not been positive for HER2/neu receptors, oncologists would have considered my double mastectomy treatment enough. About 25% of breast cancers are HER2/neu positive.)  Links are in blue if you're interested in learning more. 

This week I enjoyed the company of my Aunt Mary Colette during my infusion. She flew in from Louisville to visit and brought with her the warm, fun-loving enthusiasm that everyone that knows her loves and enjoys about her.  She arranged for the hospital gift shop to have 7 balloons ready for my 7th chemo treatment! 

It was the perfect day for colorful balloons because Ian and Henry were off school and able to come to treatment with me for the very first time, something they have been really anxious to do:

They got to chat with my oncologist, meet several of my nurses, pick up the balloons from the gift shop and the pharmacist invited them to watch my drugs being mixed and prepped in the pharmacy lab!  It was a full afternoon, especially because the room we were in was so small. :) 

I'm excited to be taking a little less toxic drug into my system each week now and I'm wondering if the reduction in my dose will impact how I feel and how my body is reacting to treatment. 

Whatever difference it makes, I'm only dealing with it 5 more times, hopefully EVER!!

P.S. I still have eyebrows.  I don't know why, but I'll take it. 

Update 23

Update 23

Chemo infusions:  6 down, 6 to go!

I am so happy to be halfway through this process and at the same time I can't believe I'm only halfway through this process!  This cancer business requires some serious stamina.

Thanks to the makers of Benadryl, I was able to get a decent night's sleep after chemo infusion #5 and again this week after #6.  Previously, it was taking me all of Wednesday and most of Thursday to recover from getting only a few hours of sleep on Tuesday night- it really takes you down hard when your body is so short on healing, restorative resources.  I have felt so much better last week and this week with that extra sleep; I think Joe and my parents would all agree that I've been a different chemo patient lately.  I'm almost energetic. The timing couldn't be better right now as we celebrate a double birthday and Valentine's Day all at once. 

No significant changes this week- hard to tell if Vitamin B6 is helping the neuropathy or not.  It hasn't subsided and has possibly increased just a little.  It definitely didn't fade and then come back again with the next treatment, which is the pattern they prefer to see.  If it continues to persist and worsen, then my chemo dose might be lowered by 20% for the 6 infusions I have remaining.  Thanks to early detection, we have that option.  

Thank you for the love and support! 

Update 22

Update 22

Chemo infusions:  5 down, 7 to go!

I had a pretty good week after my last chemo session. The hospital has private rooms for chemo patients with comfortable chairs.  After my first session in a room with a window that was pretty cold, I started layering up on Tuesdays and it has helped tremendously to have a thermal layer beneath my regular clothes.  I prefer the ease of layering clothes over dealing with blankets that I would have to bleach or burn after letting them cross the threshold of a hospital…  Kidding!  Really, even without hair on my head this time, I was warm and I have good hats to use when I want them. 

Yes, the hair came off last weekend. The boys helped Joe shave off my pixie cut and the relief I feel from the discomfort of it falling out is indescribable.  I can't believe I'm going to reference Home Alone twice now, but remember when Harry's head is torched and he runs to the yard and buries his head in the snow and you hear the sizzle of sweet relief?  That was me rubbing Eucerin cream all over my scalp on Saturday. Were it sold in 10 gallon buckets, I would have dunked my head in that lotion in a heartbeat.  

The facial rash I have been getting was indeed spread around my scalp as I suspected and applying Benedryl cream has helped start to clear it up. You can still see some red bumps above my left eyebrow in this picture from last night:

Oops, wrong picture.
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​Here we go: 

I share some of these specifics because cancer seems to touch almost everyone, directly or indirectly, and you never know when another might experience the same symptoms and appreciate knowing what helped someone else.  I seem to have a new symptom layered on each week and this time it was neuropathy.  While unloading the dishwasher a few days ago I noticed a quick pain sensation when my fingertips would bump into a cup or a bowl. I started paying attention to my fingers and realized they were a little numb right on the very ends.  Vitamin B6 twice a day was prescribed to help ease the neuropathy and hopefully prevent it from worsening as well. My vision was good and stable this week thanks to the drops, gels and ointments I'm using.  Of course, all the drops, gels and ointments make my eyes a little blurry sometimes- hah!  What's life without irony?!

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My 5th infusion yesterday went well.  Infusions are predictable now and there's comfort in that for all of us.  We are almost to the halfway mark and looking forward to that milestone. 

Aside from my treatment we are focusing on Ian and Henry turning NINE YEARS OLD on February 12th!  They just asked yesterday when cards will start coming in the mail. They are excited for birthday greetings, bringing cinnamon rolls to share at school, a 5 day weekend that happens to start on February 12th and they have their fingers crossed for a birthday sleepover to celebrate (they chose new bed lofts for their rooms instead of a party).  Birthdays will be a fun distraction this month!

Thank you for thinking of us and caring about us, we appreciate it! 

Update 21

Update 21

Chemo infusions:  4 down, 8 to go!

I saw an ophthalmologist last week to visit about my blurred vision, and dry eyes as a side effect of medication was deemed the culprit.  I now have gel drops and an overnight ointment (that feels like smearing vaseline across my eyeballs before I try to sleep) to keep my eyes hydrated and they kept the blurred vision away between my 3rd and 4th treatments!  The rash came back and faded again. The bloody noses are mild but persist.  

I'm finally experiencing one side effect I did anticipate- hair loss.  On Saturday my scalp tingled and tickled the entire day and by Sunday midday my hair started coming out. More is falling out each day- the shower floor, the soap, my body, my towel, the sink, my pillow… all have hair all over them each day.  My hair is so thick that the loss is amazingly not noticeable yet.  Joe helpfully wondered aloud if it might merely thin to the thickness of that of a normal human, hah!  He might be right but I don't think I can stand waiting to find out.  The bald heads of chemo patients always look so smooth and clear to me that I never thought about the itchy, sore, tingly feeling of a lot of hair falling out every which way. And I definitely didn't think about the inconvenience of it happening all over the place. It actually feels like a little pinprick when I lean my head against a chair back or a pillow and the hairs that are detached but still hanging out with the others are poked into my scalp.  I think I hear our clippers calling my name and I know two little boys that would love to lay into my head with them for a change. 

Infusion #4 yesterday with Abraxane and Herceptin was uneventful. It's a little anti-climactic at this point. My white blood cell count was about the same as last week, so good news that it's holding steady.  I'm excited to be nearing the halfway point and we remain confident that I'm getting good care. I'm hanging in there with less than ideal sleep; the inconveniences for me have been so minor compared to what many others endure. 

Thank you for caring and supporting our family in so many varied ways- they all make a difference! 

Update 20

Update 20

Chemo infusions:  3 down, 9 to go!

My white blood cell count today was low for the first time since I began Monday labs but it wasn't so low that I couldn't receive my infusions so we forged ahead.  Tuesday infusion appointments are scheduled for midday but we're learning that things don't really get underway until early afternoon anyway for various reasons and delays… check-in, vitals, pre-meds, waiting on oncologist approval, super expensive drugs not being mixed by the pharmacist until the patient is prepped and ready to immediately receive them, etc…

I felt pretty good between the second chemo treatment and today.  For the second time, my vision blurred almost exactly 48 hours after the infusion but this time it wasn't as severely and it cleared up faster and more completely.  I also developed an itchy rash over the weekend that started on my forehead and spread down the sides of my face, my nose and onto my cheeks.  It is bizarre how suddenly these things crop up.  Oh, I almost forgot sporadic bloody noses are in the mix too. It will be interesting to see what this next week brings… at this point smoke could start coming out of my ears and I don't think I would be surprised.

The half steroid dose worked pretty well. The steroid is given as an anti-nausea pre-med.  I haven't felt sick to my stomach exactly, but halving the dose did bring about some elevated stomach awareness. I wouldn't trade that for the half night of sleep it also brought, which was a welcome improvement from the night of no sleep that resulted from a full dose. 

I guess I won't qualify for any halls of fame with steroid use on my record now, but the boys are treated to some highly animated reading aloud on Tuesday nights from my energy swell.  I haven't timed it but I think I'm folding laundry nearly twice as fast as well.  

I am woefully behind on thank you notes but I aim to catch up this week.  We are immensely thankful for the meals, cards, texts and well wishes. Please keep sharing about this 35 year old you know with breast cancer so your family and friends will be encouraged to screen early and annually... 

Update 19

Update 19

Chemo infusions:  2 down, 10 to go!

Treatment today was uneventful, just the way we like it.  

I didn't sleep much after treatment last Tuesday, probably due to the steroid that is part of pre-medication before my infusions.  We cut the steroid dose in half for today so I'm hopeful sleep will be better tonight.  I have felt more tired than usual as a side effect from treatment, but it is mild compared to the fatigue I will likely develop as time goes on. Last Thursday morning I developed sudden onset blurry vision.  We didn't have that on our radar as a side effect and it was unsettling.  It was severe enough that it wasn't safe for me to drive for two days.  It is an uncommon side effect but we have been advised not to worry about it (stop researching seeing eye dogs and cancel Amazon Prime order of long white cane) and to expect my vision to return to normal at some point. It is much better now but still hasn't resolved completely.  

Right now I have blood work on Mondays and infusions on Tuesdays for the next 10 weeks. The infusions are midday and should normally take about 2 hours start to finish. If my blood cell counts are not high enough on any given week for me to receive an infusion, we will get off schedule but we're taking a lot of precautions to keep germs at bay (I have experience in this area) and we're assuming it will all work out.  If a change needs to be made, we'll roll with it. We are getting a lot of practice rolling… 

Thank you all so much for your love and support.  We are lucky, lucky people and we know it. 

Update 18

Update 18

Chemo infusions:  1 down, 11 to go!

This morning we went over a few studies and finalized a new plan with Dr. Soule at LMH.  After deliberating between Taxotere & Abraxane, we are going to try Abraxane.  Abraxane is a form of Paclitaxel, as is Taxol (the drug we tried last week that I reacted swiftly and negatively to) but unlike Taxol, the Abraxane is a suspension, not a solution. My reaction was to the solvent used to make Taxol. Abraxane doesn't utilize a solvent, it is delivered as protein-bound particles that are suspended in saline. Once in my bloodstream, the protein will dissolve and the drug can get to work. 

We had been so excited about Taxol because of its low toxicity and its history of being the best drug to pair with Herceptin (the drug I need because of HER2/neu positive receptors on my cancer cells). Herceptin efficacy is important to us because it's the drug I really need, I'm only taking chemo in support of the Herceptin.  

We feel good about choosing Abraxane because side effects are similar, or milder, to what they would have been with Taxol, and it should work just as well with the Herceptin.  

I am happy to report that I just finished my first Abraxane infusion without incident (I'm writing from my treatment room); makes for a much calmer Tuesday than last week!  Herceptin infusion #2 is following now.     

My port is still comfortable and I have remembered the numbing cream every time; it is applied at home before I head in for treatment. They told me to put a nickel size amount on so I go for a quarter or half dollar size for good measure.  Just as a PSA, if you were to put the cream over an area closer to dollar bill size, the nurse could tell what you did because it pales your skin. I haven't done that, it's just a hypothetical… 

I'm so relieved to send out a happy report today and I'm hopeful that I'll feel good and rest well the rest of this week. 

Update 17.5

Update 17.5

So many of you have been very thoughtfully thinking of me today and wondering how things went this morning! 

To quickly update you - I had a substantial allergic reaction to the Taxol within minutes of them starting it in my port.  In a matter of 2-3 minutes my chest tightened and then quickly got to the point where it felt like an elephant was sitting on me (what I imagine a heart attack would feel like), then I felt extremely hot (as if my body temperature almost doubled) and my entire head turned Christmas red and next my throat started to itch. I became a Code: Emergency and a whole bunch of new friends quickly appeared in my room with a crash cart; nurses, a doctor, a pharmacist…good people!  The nurse that was already in the room watching me for a reaction immediately stopped the flow. I was given more Benadryl, Pepcid and steroids, pronto. 

So, no more Taxol for me. 

They know people can be allergic to Taxol and that's why the nurse was staying so close by and watching to see how I would handle it.  As soon as I returned to normal, I was able to receive my first full dose of Herceptin, which was uneventful. 

We are back at the stage of forming a chemo plan. We are looking at Taxotere, which is unrelated to Taxol and doesn't carry the same reaction risk and also carries a smaller chance of developing neuropathy.  Instead there are aching bones and possible redness/burning of the hands and feet for a few days after- neither a potentially permanent side effect like neuropathy can be. The Taxotere plan would most likely be weekly for 12 weeks as well, starting next Tuesday, but we're researching it.  

We'll let you know next week what new plans are in place. 

Update 17

Update 17

We had a great Christmas and I think we succeeded in having it feel "normal," which the boys were really longing for- even expressing to Santa in letters that we have had "a rough couple of months."  Hope, generosity, gratefulness, kindness, perspective…these are big themes of the season for us and every season because we follow Dickens' good advice to "keep Christmas well" in our hearts throughout the year. 

My port incision is healing nicely.  The port itself is barely visible under my skin and I don't really feel it at all unless I turn my head in just the right way.  Tomorrow during my first chemo & Herceptin treatments will be the first time it is accessed. I have numbing cream to prepare the skin for that.  

I chopped my hair today to a short pixie cut so we can all get used to short hair Sarah/Mom before bald Sarah/Mom.  It felt good to exert some control over something but I do now feel like I have an audition for Peter Pan tomorrow and I kept standing tall with my hands on my hips tonight. :)

My first treatment will get started tomorrow morning around 8:30.  I don't know exactly what to expect because reactions to everything they'll pump in me are so personal and varied. The best way I can describe the feeling of yesterday and today is unsettled. As a proud graduate of the D.A.R.E. drug education program circa 1990, I kind of feel like I am saying yes to drugs.  I have never so much as held a cigarette (nor have I ever been offered one or anything else more potent) and here we go authorizing the pumping of toxins directly into my bloodstream. It's an odd thing to anticipate and I hope I don't get caught just saying yes. Just kidding.  But truthfully, knowing what it does to you and imagining willingly sitting yourself down for the IVs is a little surreal.

I do know this, and I'm paraphrasing this from another: 

Hardships might shake your core and knock you to your knees, but when you stand again, you stand with something you didn't have before.  

This family will have cancer behind us, camaraderie & compassion between us like most little boys don't witness before their eyes, and a crazy zest for all the days of life, good and bad, we're gifted. 

As soon as we start, we're on our way to finishing, so I'm ready to go and really hoping I remember that numbing cream in the morning... 

Update 16

Update 16

Both chemo education appointments went well and Joe and I are making sure both St. Luke's Oncology and LMH Oncology have results from each other's blood work, procedures, etc… so we are all on the same page and nothing is missed.  

On top of what I listed in the last update for this week, an echocardiogram for baseline information regarding my heart function was thrown in late in the day yesterday. Results look great and the tech said I had the best looking heart she's seen all week. I was a good 50 years younger than every other patient in the waiting room but I am choosing to still feel good about that compliment.  (My heart function has to be monitored over the course of the year long Herceptin treatment because heart function can sometimes decline with this drug.)  It was the first echo I've had and involved the injection of contrast dye and a long, painful period of laying on my side for the first time since surgery in November while an ultrasound wand was pressed all around my aching chest while I took deep breath after painful deep breath.  Very cool to see and hear my heart working, but I think echocardiograms are probably more fun when you haven't just had major chest surgery. 

Today's port placement went "exceptionally well" according to my surgeon when he updated Joe in the waiting room.  They didn't have to poke around for a good fit, it was a textbook scenario and placed quickly with ease, which should mean the best possible outcome for me. Before they took me back I told the doc I wanted this to be the most comfortable port he placed in all of 2015 because I don't get it out until after next Christmas! I don't care how visible it is under my skin (right near my collar bone) but please oh please let it not bother me. So far, with pain meds on board, all I've felt is a strong stinging sensation right along the incision.  Ice packs are helping with that and it will pass and I should be good to go. 

The only thing we have planned for next week is enjoying Christmas!

I am currently scheduled for chemo treatment #1 on Tuesday, December 29th.  

Before 2016 starts, I'll already be 1 down, 11 to go!  

Update 15

Update 15

Time is flying and we continue to put one foot in front of the other through this treatment process. There's no way out but through.

Today I have a short appointment at Lawrence Memorial Hospital (LMH) for chemo education, during which I will learn more about the specific drugs, Taxol & Herceptin, that I'll take and what to expect during and after treatment.  My oncology team so far has been entirely centered in the St. Luke's hospital system, which is in Kansas City and about an hour away from our home. We are trying to coordinate my weekly chemo infusions to be closer to home at LMH for simplicity and convenience. 

Tomorrow we meet again with my plastic surgeon to check on the reconstruction progress. Last week's reconstruction appointment threw me for a loop with regard to pain and discomfort and almost a week later I am still not comfortable (to put it mildly). The impact of this process on the skin and muscles of a woman's chest (and what feels like sides and back and everywhere!) is enormous. I am simultaneously amazed and thankful at what modern medicine can do and pained greatly to watch it play out in my own body.  We might choose to put this process on hold for now to avoid sitting at maximum discomfort levels through all 12 weeks of chemo, plus 4 recovery weeks after chemo ends, before final reconstruction surgery is possible anyway. 

Thursday morning we will have another chemo education appointment, this time at St. Luke's.  Immediately following that, I will have a port placed by the same surgeon that performed my double mastectomy.  This is done under general anesthesia, which is my favorite, and should take about an hour and require about an hour in recovery after the quick surgery is complete.  I will have this port in for a year because of the Herceptin treatments that have to continue after I'm finished with chemo so I'm crossing my fingers it is comfortable on some level at or near tolerable. 

That brings you up to speed with me but I want to end by sharing the delightfully precious news that my 3rd niece, Catherine Everly, came into the world last night and stole our hearts. Everly is pictured below.  The lows in life can be pretty painful but oh my goodness, the highs are really something. Hang onto them with all you have! 

Thank you, thank you for your support and well wishes. The cards, emails, thoughts, prayers and good vibes- we love them all. 

Update 14

Update 14

My oncologist is thrilled with my pathology reports and granted our wish to take the time between now and Christmas to further heal so no chemo before Christmas!  Soon after, I will start weekly treatments.

My chemo drug will be Taxol and I will have it weekly for 12 weeks, administered through a port that will likely be put in next week sometime. I will also be treated with Herceptin each time I receive Taxol and will continue Herceptin every three weeks after Taxol is done so that I receive it for a year total. Taxol is a mild chemo drug as far as toxicity goes and is generally very well tolerated. Hair loss, extreme fatigue and neuropathy are what I am to expect for side effects. 

I'm excited for a Christmas that should feel pretty normal and ready to begin the end of this cancer business right after that!