Tuesday, January 5, 2016

My surgery story

Following is an accounting of my unilateral modified radical mastectomy (in other words, removal of my right breast and some lymph nodes but not the chest wall). I thought I'd share the whole experience from beginning to end for those who are curious or who will face this in the future and want to know what to expect. I should have done this a few weeks ago when it was all fresh, so hopefully I remember everything! Feel free to ask questions.

In the pre-op area with my warming gown
My surgery was scheduled for December 3 at 11:30, and I was to get there two hours early to check in. I was not allowed to eat or drink anything after midnight the night before. Michael was with me, and we sat in the waiting room for just a few minutes before we were called back to the pre-op area. At my hospital, there is a large room with a bunch of curtained-off rooms with beds (walls on the side, curtain in front) so you have a semi-private place to get ready.

After they did all the medical check-in stuff and repetitive questions, including what kind of procedure I was having, I had to get cleaned up and changed. Despite the fact that I'd showered and brushed me teeth at home, they sent me off to the bathroom to brush my teeth again and use mouthwash. Then I had a bunch of wipes I had to use to clean every inch of my body, and there was even a diagram to do it in a certain order, using each wipe only on a specific area. I believe this was all to reduce chance of infection. Then they had me put on a gown that was insulated and had a place where a hose connected it to a device on the wall that pumped warm air into the gown to keep me nice and toasty warm. They also gave me socks with rubber things on the bottom for traction.

There may have been some drugs involved
in this one.
Throughout my wait, various people came in, asked me what kind of procedure I was having (I seriously must have repeated it about 20 times. Better than having the wrong body part removed--I started adding "my right, not yours!" at one point), took vitals, etc. My main nurse tried to start my IV in my hand, but it was horribly painful and wouldn't draw so she called another nurse who was supposedly better at it. I normally have fantastic veins that are easy to stick and draw instantly, but it took this other nurse two more tries--one on the inside of my forearm and another on my hand to get it to work. The final one was still uncomfortable but the pain finally subsided. She said that chemo often does that to you--weakens your veins or something. Hopefully they eventually return to their former glory, because that seriously sucked.

The surgeon and anesthesiologist both came by to see if I had any questions and ask me what procedure I was having, and then finally one of the OR nurses came and that meant it was time to go. At this point it was almost 1:00 because the OR was behind schedule. Michael and I said a final tearful goodbye, and I was wheeled away to the OR. Once we got there, I was asked to state one final time which procedure I was having and they were all duly impressed at how easily I rattled off "modified radical mastectomy of my right breast--my right not yours!"

They had me climb from the rolly bed to the operating table and got me settled. Someone put an oxygen mask on my face and hooked up the IV. I remember talking to the various people working around me, and then the next thing I knew I was on a rolling bed and the nurse was telling me, "You're all done, Jennifer. you did great." I don't know how long the procedure was, but it was somewhere around 1.5 to 2 hours.

I was quite groggy and foggy, and I struggled for a few minutes to wake up. There was pain, although not excruciating, and the nurse was right there putting something in my IV to help. She kept upping the dose until I said I couldn't feel anything. Michael was by my side within a couple minutes. They kept me there in recovery for maybe a half hour or 45 minutes, then wheeled me up to my room.

The pain was really not bad. After that first dose of pain meds, which I found out later only lasted an hour, I only asked for a dose a couple more times so most of the time I actually was on my own. After I got home, I generally only took something for pain maybe once a day, usually at night. After a few days I didn't need it every day.

That first night, I could not keep anything down. I was on a clear liquid diet (anesthesia often causes nausea), which included juice, chicken broth, and jello, but I threw up every time I tried to ingest anything. Finally, they said the IV pain med might be contributing to that and suggested I try going without or switch to oral. I went without and slowly sipped water and chicken broth throughout the night. I kept it down and was able to go on a full liquid diet in the morning--this included cereal, so I felt like I was finally getting something of substance. I hadn't eaten in well over 24 hours at this point.

I had two drains coming out of my side, long stretchy tubes leading to bulbs that collected blood and lymph fluid that was draining into the surgery site. The tubes had to be milked and the bulbs emptied every 12 hours or so and the volume noted. The nurse did it for us but showed Michael how so he could do it after we got home. It was actually pretty easy to do, although if you looked too closely it was a little gross. Michael was a trooper about it. The bulbs had fabric tabs so they could be pinned to my gown, but Sutter sent me home with a pouch on a belt which was pretty convenient although I was super tired of wearing it by the time the drains came out.

Anyway, the doctor came in the morning and pulled my bandage off. That was probably the most painful thing of this whole experience. I actually screamed a little. However, he said everything looked good and was pleased with how the procedure went. He'd only taken a small sliver of my pectoral muscle. However, there was no way to know if he'd gotten all the cancerous material, how many lymph nodes were taken, etc. until the pathology report came back a week later.

My hair today, 10 weeks after final chemo.
It's finally showing up in pictures!
Also, eyebrows!
As far as the surgeon was concerned, I was good to go and could be released, but I was not allowed to go home until I could walk to the bathroom without being dizzy (which I accomplished pretty quickly, actually) and eat solid food (which happened at lunch time). As is typical in hospitals, it took quite a while to get all the paperwork and whatnot done so I could go. The nurse navigator (Mary Pare at Sutter is just awesome) came by and gave me the pouch, a little pillow for resting my arm on or using in the car for the seat belt, and a camisole with falsies in it so I could look normal if needed until I'm able to wear a proper bra and prosthetic. (For the record, I've worn it exactly once at this point as I'm generally too tender to bear it, or my comfort bras, for long. I just go out braless and don't worry about the fact that I'm obviously missing a boob.) She also made sure we had all our questions answered about taking care of the drains and other care concerns, told me to eat extra protein, etc. Then I was finally released and wheeled out to the car so I could go home.

At home, we propped me up on a wedge of pillows and I slept on my back for two weeks until the drains came out. For showers, we pinned the drains to a lanyard around my neck and wrapped my upper torso in saran wrap because nothing could get wet. We also did a couple of sponge baths with "adult wipes"--kind of like baby wipes, but I guess scented for adults. I had a post-op appointment one week after surgery, where I got the path results (I posted about it, but if you missed it only 4 lymph nodes were removed and there were no remaining cancer cells--I had a complete response to the chemo).

At that appointment, he took out one drain. The other drain still had too much production and had to wait until I had less then 30ML for two straight days, so it came out a week later. They also removed the staples that first appointment and put on a bunch of steri-strips along the whole incision. None of this was painful, although there was minor, momentary discomfort. I took a pain pill before I went in for the first appointment but forgot the second time and it was no big deal. With the second drain out, I was able to sleep on my left side (still can't quite sleep on my right although it's getting a little more comfortable to lie on it) and take real showers. I was able to take the steri-strips off after the second appointment. It was an uncomfortable thing to do, so I'd do just a few at a time in the shower until they were all gone.

I started doing physical therapy exercises (I didn't get an actual therapist, just a sheet of exercises to do) the day after the drains came out. At this point, I can slowly raise my arm pretty far above my head. I need to get a little more range of motion back before radiation starts, but I'm almost there. My energy is returning quickly. I only have pain if I do too much with my right arm...which is most days because I'm not that smart.

That's everything I can think of!


  1. Thank you for this "play by play" of the surgery experience. It's, no doubt, beneficial to many that are about to go through it and wondering what's involved. My wife had her bi-lateral mastectomy last Tuesday and the procedure is very similar to the one you described. (She was diagnosed in July with a large and aggressive triple-negative tumor in her right breast as well as cancer in adjacent lymph nodes.) She is doing well and was thrilled to have those darn drains removed on Monday. (She had three - two on her right and one on her left.) She concurs with many that they are the worst part! A day after her surgery, she said "It's still early, but this is nothing compared to chemo" - a sentiment I've heard others share as well. She's finding, as she predicted, that she feels better each day - very different from the vicious cycles of chemo. She's now focused on continuing to rest and recover and do her stretches. She had 11 "level 1" lymph nodes removed on the right side and will do what she can to prevent lymphedema. The good news in all of it, though, is her pathology results (like yours) showed no signs of cancer after chemotherapy. It had all melted away with the 4 A/C dose dense and 12 Taxol/Carboplatin cycles. The PCR makes all of the treatment worth it and we are so thankful to be working with the great care team through the Fairview/University of Minnesota health system. They are proving that the no holds barred approach to treating Triple Negative breast cancer is exactly what needs to be done. Like you, my wife will next undergo 7 weeks of daily radiation treatments to make damn sure it's all gone. That will likely start in mid-March as she is having immediate reconstruction and the plastic surgeon needs the expanders to be fully expanded prior to radiation. Thank you again for your inspiring and useful blog. Based on your blog, I get the sense you do your best to maintain a positive outlook as you go through this. My wife is similar and I have no doubt it's a huge part of a successful treatment plan. Given you are about a month ahead of her in your treatment, she also finds your running photos of hair progress useful in terms of what to expect. Our best to you for a smooth and easy (at least contextually) course of radiation treatment. J&S - Minnesota

  2. Thank you so much for sharing your wife's progress! I'm glad she's doing well and sending her lots of healing thoughts. I hope her reconstruction and radiation go well. I'm so glad you find the blog useful!