Updated: 6 days ago
If you don't want to read the novel - here are the cliff notes: Surgery went as expected, I am home humbly recovering now - still with around the clock help and my pathology came back clear. And I have boobs again!
The Long Details: By the two week mark from my double mastectomy, I was feeling pretty mobile and a bit like myself again. My biggest complaints were my nerve pain in my arm and the drains still having to remain in. They were being used as spacers for my next surgery, so I understand, but it did not make them any more comfortable. Mother's day was the day before my next operation and what a wonderful day it was. We went to a local nursery to pick out my garden veggies for the season and beautiful flowers for me to enjoy when I got home from the next one. I was able to get ready and hide my drains. It is a surreal feeling, however, walking around in public knowing that you have open wounds, drains and in between surgeries. It's a secret that nobody knows. It's another lesson of never ever make any assumptions about anyone you come in contact with. You never know what they are hiding or dealing with mentally.
Back to Day 1: The timer reset on May 9th. Surgery day, again. We arrived at the hospital at 5:15AM for a 7:15AM surgery. This time I packed a bag as if I was staying the week. The anticipated stay was 3-5 days. See my separate blog for a helpful packing list! Surgery was 8 1/2 hours long. I had two microsurgeons - Dr. Shaum at Swedish American (originally from UW Madison) and Dr. Michelotti (who drove down from Madison to help) Remember - the procedure was a DIEP Flap Reconstruction - using my own "donor" abdominal tissue - to reconstruct breasts. (https://prma-enhance.com/breast-reconstruction/diep-flap/)
8 1/2 hours. Poor Jake. He and my aunt Anne got to know the inside of the hospital quite well! My recovery time waking up was another 2 hours. No panic attack this time, just massive discomfort that had to be managed. After over 10 hours, I was wheeled up to the 5th floor where I was greeted with Jake and Anne's smiling faces. I was given the choice to try to get up and pivot to my new bed or for them to pick me up. I chose the pivot....and it.was.terrifying. Terrifying but I did it. Back in the hospital bed.
The first night was NOT fun. The nurses had to check on my "flaps" or "foobs" or new boobs every hour, with a doppler. They would listen for the whoosh of the blood flowing through the vessel to make sure the tissue was still attached to a blood supply. It is a one time shot - if the flaps fail you are back to step 1 - trying to figure out what you want (or don't want) for reconstruction. There is also a small risk of blood clots. I had heparin shots several times a day to thin my blood to reduce the risk (the back of my "good" arm is bruised to hell since they can't use the arm they removed all my lymph nodes from). Pain meds were provided every 3 hours. On top of all of that, my catheter was not draining on its own, so I had to call the nurse all the time to empty it. The nurses were in the room ALL the time! There was zero rest.
The pain was more of an all over discomfort. I had to keep asking what I was feeling. My skin and abs were so tight. It felt like I had done a million sit ups. I couldn't figure out if it was pain, if it was my abs, my skin, gas, hunger, the urge to pee, the incisions. I didn't know if I could hurt myself more. I was very uncomfortable in my own body. I didn't feel any discomfort in my chest. AND THE DRAINS. MORE DRAINS! 8 total.
Day 2: Dr. Shaum checked on me early in the AM and seemed pleased with how I was heeling. All I was I was capable of on my own was laying there. I needed nurse help to scootch, to move, to do everything. I pleaded to get the catheter removed, but had to agree to get up to walk to the bathroom. Yet again, another terrifying idea. The first time getting up was the most humbling experience ever. It took all of me to simply move my legs to hang off the side of the bed. I could not lift my torso off the bed even in the full upright position. The nurse had to push me up from behind. I literally had to sit there to catch my breath before I was even ready to stand up. In the standing position, I was totally hunched over. I granny walked my way over to the bathroom, gripped on to the handrail and did the slowest air squat ever. It took ALL of me. If felt good to be "upright" and breathe in that position, but I knew I had to get back into the bed. It was far harder to get back into the bed. Excruciating. The IV fluids were rocking and I began dreading every bathroom break. I knew it was good for me to get up and move, but it took ALL of me to simply go to the bathroom. Throughout the day, I reluctantly agreed to the stronger pain meds - to get relief from the pressure, the tightness, the drains, and the back pain from not being able to move in the bed. Not to mention, I hadn't slept yet. I know my body needed rest to heal and I had not had any of that yet. Dr. Shaum came back in in the evening to tell me that my job the following day was to take a shower. In that moment, I thought she was crazy.
The second night I got about two hours of rest at a time, thanks to the Valium. It helped my muscles in my back and abdomen relax enough from me to zonk out between nurses visits.
Day 3: I waited for Jake to come visit first think in the morning after dropping the kids off to school. He brought me a travel pillow which ended up being a game changer (still is). And then...per doctor's orders - I showered. Yet another terrifying feat. Again, it took all of me just to get out of the bed and hobble to the bathroom. But once I stepped in to the warm water, it was all worth it. It felt SO good on my achey back. It was slow. It was painful. But I did it! I made it back to bed a new woman. Oh - I should also note that my room was required to stay above 74 degrees for this recovery - ladies going through this, get comfortable with just being naked all the time. The robe is just one more inconvenience and it's hot!
About two hours later the occupational therapist came in to assess my living situation. She asked how many stairs were required to get into my home, where the bathrooms are, where the shower is, etc. Although I have a recliner on the main floor, the bed and showers are up a full flight of stairs. She urged me to get up so she could teach me how to climb stairs. I was resistant. I was absolutely wiped from the shower and bathroom trips. She was kind, patient and motivating. I reluctantly followed her. I had to take breaks in the hallway on the way to the stairs! She rooted for me the who way. I made it to the stairs, up the stairs, back down the stairs and back to my bed. I then slept for 2 hours straight. Hard.
Day 4: Dr. Shaum woke me up around 7AM and said I was recovering wonderfully. If I was ready, I could go home today. Yet again, terrified. The ride home seemed terrifying. Finding comfort at home seemed impossible. I still needed around the clock help. How the heck was I supposed to do that at home? Nonetheless, Jake arrived at 8:30 and we were discharged by 10! It seemed far too soon, but once I got settled in my own home things seemed to turn around.
Day 5: I move from chair to chair in order to find back relief. I am still walking hunched over and have very little back endurance. I still need help getting in and out of bed. My drains still are the worst. This time, I am staying on top of pain meds (tylenol/ibuprofen) to manage the discomfort. My sweet Aunt Anne is staying with us to nurse me back to health!
Ohhhh....and It's nice to have boobs again! It's a little less disturbing to look at than the post mastectomy skin! Still have no idea what magic Dr. Shaum did to make boobs with what little stomach tissue I had, but she nailed it! I'm sure once everything settles that I will be very happy with my albeit very scarred, but feminine body!