Happy Holidays! (And a bit more on surgery and the recovery)

TL; DR: Physical recovery going well even though the drains stayed in longer than I wanted.  Emotionally/mentally has been a big challenge and I’ve have been struggling with some pretty terrible insomnia. Oncologist also thrilled with pathology results, still have to do radiation, Keytruda (9 rounds), and other surgeries. More info on the surgery and recovery itself.  I hope everyone is doing well and having a wonderful holiday season!

Hi everyone, thank you for your patience with the delay on this post.  It’s been a mixed couple of weeks as you’ll see.

First off, to those of you who are celebrating Chanukah this week, I hope you are having beautiful celebrations with those you love.  For those celebrating Christmas at the end of the week, Merry Christmas and I also hope you get to celebrate with those you love.

Physically, my recovery is going very well.  No infection, the incisions are healing, I am only taking Tylenol at night when I go to sleep, it’s mostly good.  I’m still sore and my chest area is very sensitive/tender where it has feeling but mostly numb due to the tissue and nerve removal.  (This is mostly permanent, more on that later.) The connectivity of the arm muscles to the chest area has been eye opening.  (Arm muscles don’t hurt but I feel it in my chest when I do my arm exercises…I always knew this was true but “knowing” and “feeling” are two different things.  There are a couple of areas that I’m struggling with though.

The first was the surgical drains.  Because so much tissue was removed (according to the pathology report around 3.5 lbs of tissue) one of the things your body does as part of the healing process is produce a lot of fluid. In my case this fluid was then captured in these drains that exited my chest and had to be emptied 2-3 times/day.  (I had one drain on the right, and one on the left.) The normal “stay time” of the drains is 7-14 days but my body was producing a lot of fluid and so I had the drains through yesterday which was almost the 3 week mark.  I was very glad when the doctor removed them yesterday.  The drain exit sites are a bit itchy but I’m hopeful that means they are healing!  

The other main struggle I’m having is insomnia.  It’s been a struggle.  About a week after surgery for almost a week I only slept ~1.5 – 2 hours or so a night.  The insomnia doesn’t seem to be pain related so it must be more emotional/mental or something else.   With some medication (and we’ve tried a bunch both over-the-counter and RX and none of them are perfect) I started getting 3-4 hours of sleep and now somewhat consistently 6-7 hours of sleep a night. That might sound great, but it is not the 8-9 hours a night I am used to and feel I need. I also don’t think it’s terribly high quality sleep.  I’ve been pretty miserable and it’s upsetting when you’re not sleeping.  The lack of sleep is really affecting my mood.  I’ve had feelings of depression and have now swung to more anxiety symptoms.  It’s been really hard. 

Another thing that’s not helping my sleep is having to sleep propped up on the wedge pillow so that I can get out of bed without my arms.  As a devoted fetal position side sleeper, this whole sleeping on my back thing is absolutely miserable and not helping things.  I got permission from the plastic surgeon to push myself out of bed using my arms which would allow me to sleep more normally, but that’s contradictory to the paperwork I got with the PT exercises so it’s hard to know what to do.  Right now I think I may sleep with the wedge for few more days (he wanted me to limit my arm movements until 72 hours after the drains were removed) and then maybe go from there. 

The mental part right now is incredibly difficult.  There’s something going on here emotionally and we’re trying to figure out what it is.  It could be mourning the changes to my body (which I don’t really seem to think is it…but maybe it is subconsciously), it could be build up of emotion from so many months of marching on and maintaining positivity and I finally cracked. There’s also the bit where even though I’m “cancer free” I still have so much to do with radiation, more immunotherapy, and 2 more surgeries.  There are days this feels like it’s never ending.  We don’t know yet what’s going on, but I’m working on it trying to figure it out and get through it – everyone assures me this is temporary.  

What I am grateful for (and a bit surprised by) is that when I’ve told people what’s going on, no one is surprised…I’m surprised, but everyone else tells me I’ve gone through a lot and maybe this is expected.

Full disclosure: I have a therapist and have had one for a long time (even since before cancer) and I am so grateful for her and my doctors for helping me work through this.  It’s been intense and these feelings have been stronger than any I have ever felt and it was scary to feel so hysterical at first and I don’t like this feeling like not myself.  I called in help pretty quickly when the insomnia and intense mood changes started happening and I am glad I did.  I’m improving, but definitely not back to my normal self.

On other healing/recovery fronts I am feeling good about my arm range of motion, I do my PT exercises 2-3 times a day. On Monday I am very much looking forward to being able to lift my arm over my shoulders and reach into the upper kitchen cabinets again.  

On the doctor’s appointment side, last week I saw my oncologist and just as expected based on the pathology results she was thrilled.  She indicated that there is “no disease left to treat” and that the Keytruda is to amp up my T-cells to help them keep an eye out for “anything funny”.  I also saw the endocrinologist and the hypo thyroid is under control.  This week I saw the plastic surgeon.  He removed the drains yesterday which was really nice and did some initial tissue expander inflation to help reduce fluid production since the drains are out.  (The idea being if there is less “gap” there will be less space for fluid to accumulate.) Next week I see the oncological surgeon and we’ll likely talk about the referral to the radiation oncologist.

Note: if you don’t want to read about some specifics of how things physically look after the mastectomy, and some surgery details, please skip these next 3 paragraphs. (This explains some of the things about why the surgery was so long as well…)

One thing I realized I don’t think I’d ever mentioned/explained was some of the specifics of the surgery that was done.  I had what was called a nipple sparing mastectomy.  A nipple sparing mastectomy also implies a skin sparing mastectomy as that’s how blood flow is maintained to the nipple. Because of where my cancer was located (closer to my armpit vs. nipple) I was eligible to try and spare the nipple.  (There is a small chance of cancer recurring here, but since you can’t remove all the breast tissue anyhow, this a very tiny additional chance and isn’t really worth worrying about.) This doesn’t always work, but I’m very happy to say that so far it seems to be working for me.  The blood flow is very good to the nipple. Because the tumor was deeper in my breast I was also eligible to spare the skin.  Basically what this means is that rather than my breasts looking very stretched and small without nipples and not a lot of my original breast skin, my breasts currently look somewhat the same but deflated with some incisions.  It’s a bit weird, but I have to say it’s nice to see my skin and my nipples still there.  In general, I think to myself, “oh they’ll be inflated again some day” – and they will be with the tissue expanders near term and in the long term, implants.  (Although they aren’t as deflated as they were since he put some saline in the expanders yesterday….they are not fully “inflated”.)

The other thing I had done was an experimental nerve graft.  This technique takes an animal nerve (strangely I didn’t remember to ask what kind) and connects the nerve to the nipple and then back to some of the larger nerves in the torso.  This technique may restore some physical sensation to the nipple.  This was done on both sides.  As I mentioned, it’s experimental so we don’t know if it will work and it will be many months before it even could be clear it’s working if it works.  However, because currently my entire chest is mostly numb (and is expected to stay that way permanently) I figured it was worth a try, we’ll see how this goes as it might at least give me some feeling in my breasts at the nipples.

Both of these things were time consuming in surgery.  The other thing that happened was the plastic surgeon inserted the tissue expanders (because my skin will shrink as part of the healing and then need to be re-expanded before radiation) and some other cosmetic items to help make the reconstruction experience more positive.

All in all, it was a lot of surgery which is why the surgery took so long. 

I’m ready to be bounced back, but I’m beginning to see why they say it takes 8 weeks to heal from this.  It’s not fast and while not the end of the world, it’s definitely a recovery.  This isn’t my strong point.  I’m trying to not do a whole lot let myself heal while still keeping some movement going with the PT and gentle walking.  Thank you again to all of you for your continued support in the form of your thoughts, prayers (still very much needed!), comments, check-ins via text, email, FB, cards, support, meals, food, grocery/Costco runs, gifts and all the other things you are doing, we are so incredibly grateful for each and every one of you – thank you!  We hope your holiday season is beyond wonderful! 

The now “standard” note at the end of posts for website navigation help:

Thank you for taking time to keep up with us and see how we’re doing as well as all the help!  Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone.  If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page).  There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages.   Please know that reading this page and thinking of us is help!   Thank you for your support in all forms! If you have any issues, please email [email protected].