[Editor’s note:  Upon request for a “journal type entry”, Therese sent us (Liz and Mary) a description of what she’s feeling today but asked us to edit for typos as she’s still not up to par.]

I’m now three days out from surgery.  The pain is worse than it was while in the hospital although I have less nausea and am less loopy from the anesthesia. (The worst pain, so far, was last night.)  I’m never fully pain free unless I’m sleeping, which I am luckily doing a decent amount of, although it is not consistent through the night.  It hurts to lay flat on my back, so I’m generally always laying at about 45 degrees.  I’m not used to sleeping on an incline, or on my back period, so that may also be contributing to my segmented sleep pattern.

There is a constant, strong pressure across my chest and I can’t quite get a full breath in because it hurts too much.  It feels like my chest is being ripped open when I try to use my hands to sit myself up to 90 degrees, or to get from the 90-degree sitting position to a standing position. This has gotten better though and I manage it.  The drains are definitely contributing to my discomfort and pain; I can feel them in my chest and can see them pushing against my skin.  I cannot wait to get them out.

Right now I spend all of my time sitting (at an incline) in my living room where I don’t move much generally.  I currently have to rely on others for basic daily needs.  How does anyone do this alone?  For example, using the restroom is a big event.  Walking (shuffling) the 72 feet to the bathroom doorway takes 5 minutes.  I’m fearful of falling from the pain and/or the dizziness caused by the pain meds and hitting my arms and/or chest on the ground.  Even worse, I’m frightened of falling and instinctively bracing my fall using my arms.  Also, I can’t really hold on to anyone for support, or hang on them to support myself, because using my arms away from my body is very uncomfortable.  I do need to be assisted using the bathroom.  The damn elastic waistband is too much for me to pull down/up.  To some extent, I still try to use my arms as much as I can, even though it hurts, because I don’t want to lose mobility in my arms (as I’ve read is possible).  My surgeons have told me I can use my arms normally but no significant weight or exercises while the drains are in and then I will be specifically instructed as to the progression.  It does take time to eat because I lift the fork or spoon cautiously trying to bend only my elbow rather than my entire arm which is more uncomfortable.  I must say though, the adult sippy cup and straw provided by the hospital has been a lifesaver.

I’m cleared to shower but the thought scares me as I still have the drains hanging from me and soapy water going over my scars and drain ports makes me queasy.  Cheryl has been persistent though.  Yesterday Mary and I really bonded when, wearing nothing but my underwear, Mary wiped me down with baby wipes. Today though, for the first time, I took a shower, i.e., I stood in the tub with my drains held by a lanyard around my neck and sometimes holding my drains out from me while Cheryl washed my hair.  Though I love my mom and sister very much, standing naked in front of someone (even your family) and having them bathe you is kind of a degrading experience.  I think the last time someone had to help me bathe was when I was a baby, and I’m sure I didn’t like it much then either.  It is refreshing to have clean hair though, and I really don’t know what I would do without my mom here to help.  The whole showering process wiped me out and I slept for an hour as soon as I got back to the sofa.

Up until recently I refused to look at the drains, scars, my chest – any changes to my body from the surgery.  I thought the site of them would make me faint.  Fun fact:  almost fainted when this summer the drains were placed in front of me as the nurse explained how they would be placed in surgery and the care they would require.  Even in the hospital I could not look at the drainage when the nurse would empty and measure the contents.  My sister Liz covered the containers that were used to measure as they sat in my room. She was really good about distracting me during the stripping of the drains while Mary observed and talked to the nurse.  I’m sure not everyone would have this experience, but for me, it was more than I could handle.  Yesterday I finally looked at the pictures my sisters took and I must say, the incisions look 100x better than I expected.  As is most often the case, my imagination painted a picture of something much worse than the real thing.  Still though, it’s really weird to see my chest deformed in the way it is; almost like it’s not mine (as I was warned).  What’s also weird is that I feel pain in the general vicinity of where I no longer have breasts, but the skin there is numb to the touch (and will always be).  Despite all of this, I know that eventually it all will be fine and I have confidence in my reconstructive surgeon. The final reconstruction/implants will be completed in February.

T got some better sleep last night. She is still waking up every few hours consistently, day and night, but she seemed to be in a little less pain this morning. Mary removed her pain pump last night. This was the skinny looking line that you can see below her drain tubes in the pictures from the latest post. The pain pump is a local anesthetic that she had a “switch” for – it was a large, clear disk that was full of the medication, and she could push the button every 30 minutes, to activate the release of the pain medicine at the site of the incisions. This usually lasts patients for about 72 hours post surgery. Because T didn’t feel that it was significantly helping with her pain, and because it was the potential cause for the uncomfortable rash on her back, she had Mary pull it out last night. It was a very quick process – she didn’t feel pain, but she could feel the line moving through her until it came out.

With the pain pump removed, she now will rely on oral pain medication as needed, as well as an antibiotic for the next week, to prevent any type of infection at the incision site or drain locations. Mary and I are back in Seattle & Gainesville now, although we both wish we could stay and take care of her with our mom for as long as she needs!

Don’t worry, I’m not posting topless pics of Therese, or at least not from the front.  (Although, if you are considering a mastectomy or have been through one, Therese would be happy to share those pictures privately.)

Therese started getting itchy on her back yesterday morning, and by last night it was a full-blown rash.  The picture below doesn’t really do it justice.  We’re not sure what caused the rash, but our best guess is that the hospital bed sheets (and whatever detergent they nuc them with) is not sitting well with her skin.  Good news is, she doesn’t have the mobility to itch it.  Not sure she agrees this is good news.  We think the Benadryl and hydrocortisone cream are starting to make a little progress though, so hopefully we can kick this thing today.

mystery rash

In the meantime we removed her wrap and pajamas and gave her a “shower” with baby wipes.  Below you can see her left and right drain ports.  In the right drain port picture, you can also see most of her right incision. The really skinny tube below the drain port is the local anesthetic line.  Her stomach and chest are actually quite swollen, though you can’t really tell because she’s a skinny bitch.  I took 20+ additional pictures of her incisions and chest area, and for the first time she looked at the pictures.  (She’s going to blog about that experience later.)  In my non-expert opinion, I think her incisions look great.  The whole process was quite emotional and exhausting for her so she’s passed out now.

left drain

right drain and incision

Therese was released from the hospital today around 1:00 pm and is now resting at home under the care of Nurse Cheryl.  Her bed is too tall for her to climb into, so she’s set up in the TV room under the watchful eye of her dad and brothers, all rolled up into a single, inflatable, mustached, emasculated doll with chest hair.  Her pain is a little greater today, though still manageable with hydrocodone every 4 hours and a localized anesthetic pump (see video below).

Before watching Therese go through a bilateral mastectomy, all I knew about the surgery  was that it involved breast tissue removal.  I had no idea where the incisions would be, how much tissue would be removed, whether or not the nipple could be spared, what  reconstruction options were available, etc.   The part I knew the least about was the recovery process, despite knowing several people who’ve had mastectomies, such as my grandpa, uncle, aunt, moms of friends, and bestie Angie J.

A week or so before Therese’s surgery, I asked her about the recovery process so I could make her a care package.  Her characteristically detailed, well-informed response described a significantly longer and more painful process than I had previously envisioned.  Surprised and concerned, I immediately forwarded her response to several female friends (#schuester), all of whom had a response similar to mine:  “Holy shit! This is a big deal!”  Male friends were even more in the dark (sorry gentlemen, it’s true).  So, I thought it was a great idea when Therese said she wanted to use her experience to spread awareness and help other mastectomy candidates and/or patients get through this arduous and emotional process.  Just when I didn’t think she could get any braver, Therese informed me that I had the green light to post whatever pictures would be helpful/informative, no matter how unflattering.

One blog post cannot cover all that she is going through physically and mentally, so I thought I’d try to attack what I can in multiple focused segments.  I have to start with the most patently inhibiting and uncomfortable part of her recovery: the “Jackson Pratt” drains (4) sutured into her chest wall for the purpose of removing fluid from the newly-made cavities in her chest.  Each drain consists of a grenade-sized collection bag with a long tube coming out of the top.  The tubes are no joke; each has a diameter roughly that of a colored pencil.  Each tube extends from the inside of the newly-made cavities in her chest through one of the incisions to its respective bag hanging at her side.  A significant portion of the tube is positioned under her skin (see below).  It goes up under her arm and snakes around the chest area where breast tissue was removed. Every 6-8 hours the tubes have to be massaged to move any clots down the tube, away from the wound and into the bags, to maintain patency.  The bags must then be opened, emptied (see video below) into a waste container and measured.  Therese says this process is somewhat painful, but mostly just uncomfortable because she can feel the suction pressure under her skin.

Though Therese insists that “it’s not that bad,” it looks pretty darn disgusting and painful.  Right now she’s wearing a vest specifically made to hold the drain bags.  She was fitted for several of these vests weeks before her surgery. The vest opens from the front and has velcro-fastened, interior elastic pockets to hold the bags. Because the tubes extend through the incisions, she can’t get her chest wet (and thus can’t shower) and she can’t raise her arms.

Asked if this is still worth it, she answers “definitely.”

T and I were able to watch the sun rising this morning from the hospital room. She did great overnight. Her drains have to be emptied every few hours and she had some low blood pressure readings, so they came in to see her every 2 hours and provided her more fluids. As the local anesthetics start to wear off, she is now in more pain. She was able to eat some eggs, oatmeal, and turkey sausage this morning and they are going to try and switch her to the pain pills and see how she handles them.

She’s looking good sitting up though!

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Had to stand up to make the trip to the restroom and it didn’t go well. She got very nauseated and light headed. This is very common, especially post breast surgery, and is typically more common in smaller framed women post op. She’s now resting with a gift from her Uncle Jim, Aunt Cindy, and cousins Carrie and Lane.  Here’s to hoping we can still watch MNF.

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It has been a crazy last 24 hours in Chi Town. I was able to spend all day yesterday with T – we brunched, ran some last minute errands, went for a 5 mile run along the lake, and spent time laughing, drinking, and joking until the wee hours of the night, in large part thanks to Mary. Mary is the one who came up with the idea for this blog, and she also was the brains (and laughs) behind the gift baskets we put together for T.

It’s hard watching your sister go through a surgery like this. I am incredibly proud of her. She has always been a very intelligent, insightful, and strong person. As a fellow BRCA2 carrier, I hope one day to have as much courage and strength to go through with the surgery. Most importantly, I hope that her story educates, comforts, and inspires other young women and men to do the same!! 🙂 Love ya T!