On 7-7-15 I posted this to my secret Facebook group; “I slept well last night, I’m ready to have the cancer removed and the rest of the tissue so it can never come back. Thought there may be some days that I might regret my decision, but no. I’m all in”. I also changed my profile picture to Rex, the green T-Rex in Toy Story. I’m sure a few people wondered why, but those that knew, knew why.
My calendar had 3 entries for today;
- 8:15 am Dye Infusion at Cherry Creel Women’s Imaging Center with Dr McAleese
- 9:30 am Check Into Rose Medical Center
- 11:30 am Four Hour Surgery
I was dressed in oversized clothes because that is what I would be wearing when I left the hospital the next day. The surgery involved removing all breast tissue and nipples from both, then my pectoral muscles would be cut so tissue expanders would be inserted under the muscle. I would also have surgical tape called Alloderm placed under the skin to act like a wired bra shelf. I had never really thought about it, but when you remove the breast tissue you can’t just throw in a couple of implants because there would be nothing to hold them in place. Normal implants sit behind breast tissue, they were removing my breast tissue, so I needed a shelf for them to sit on, and they need to be placed behind muscle to hold them securely.
The tissue expanders added during the mastectomy surgery are temporary and are added while the pectoral muscles are stretched. I was told that about 3 weeks after surgery I would have between 50 to 100 ml added every 2 to 3 weeks until I was inflated to the correct size. To be honest I really didn’t want to know anything else before surgery. I was not capable of retaining much more than the big picture overview. I needed to let some things digest in my brain and then add another layer of detail.
Dr Schwarzberg would start on my right breast and remove all tissue from just below my collar bone, to just above the bottom of my ribs. The removed material would be sent to pathology. She would also remove a couple of sentinel nodes for pathology to test immediately (they would know if the cancer had spread before the end of the surgery). Once Dr Schwartzberg had finished with the bad girl, she would move to the “good” boob. At the same time Dr Capraro would start working on the remains of the bad girl; add alloderm, cut pectorals and add tissue expanders. Dr Capraro would also sew up and add drains.
Cherry Creek Womens Imaging Center
We arrived early. I was calm and only a little nervous, at that point I really just wanted to get everything over and done with. I just wanted it to be July 8th!
Dr McAleese was to administer contrast dye. I believe it was radioactive and would help Dr Schwartzberg locate the cancer and lymph nodes. The procedure was a little painful. Okay, it was quite painful, but I had got used to all the needles and jabs. I had learned to keep my body still and just wiggle my feet when I felt pain. So thats what I did when they injected the contrast dye around my nipple.
I love Dr McAleese, she is so nice and I instantly knew she was good at her job. I would trust anything she said, so I almost lost it when she said goodbye. She hugged me and wished me luck. She said that I may not see her again (no more mammograms), but she was very happy I was having a double mastectomy. My biopsy had shown a high nuclear (grade 3) that had worried me (I’m not really sure why, I have no idea what it meant). Dr McAleese said she didn’t like pathology reports that come back with high nuclear grades, she called them bad actors. It reinforced my intuition, but it also made me feel that I really had made the right decision (she said exactly what you want to hear before surgery). I had read a lot of reports that too many women are amputating their breasts when they don’t need to. The mutilation is completely unnecessary. To me, not having a double mastectomy would not eliminate recurrence in the bad girl or the chance of getting a totally different type of cancer in the remaining good girl. I was only going to go through this once. I do understand there is still a 1% chance remnants of breast tissue may form cancer, but those were the lowest odds I was given, and I’m good with that!
Rose Hospital Check In
We checked in to the hospital and were sent to a large open area. The area had a few people waiting. A couple of men had laptops and must have been waiting for people. It then occurred to me that this is where Chris would wait while I was in surgery; there was a digital board like the ones you see at the airport showing flight details. This board listed operating rooms and Drs names. It was must more fancy than the one on Grey’s anatomy!
I was called and Chris was allowed to come with me. They would bring him back to this area when I went into surgery, and the surgeons would come to this area to report on my progress.
Surgery preparation was actually a fun few hours, if you can believe that. Nurses and hospital staff are professionals. Everyone was happy, even funny. I was not worried, I was having fun with some cool new friends that I will probably never see again.
I had to get undressed and wear a gown and compression stockings (from ankle to thigh); for 3 days!!!! I made fun of putting them on, I giggled, they sympathized. I forgot to take off my bra after being hooked up to a drip (what was I thinking). A nurse helped me take off my bra through my sleeves and I joked about not doing that since high school.
I few weeks ago I had had done all the pre surgery requirements (given my medical history, provided blood, had an EKG), but there was an issue with ketones in my urine and I also needed a chest X-Ray. A mobile X-Ray was brought to the gurney and they took a couple of X-Rays because apparently I have long lungs and the first one didn’t capture everything. Before I got undressed and hooked up to the drip I had been asked to empty my bladder. I was also told I would be catheterized so there would be no accidents during surgery. I was not happy to hear that they wanted to redo the urine ketone test and needed a urine sample: I was empty and pretty sure I couldn’t give a drop. They cranked up the drip and kept asking me if I felt I could “go” again. Ketones in urine are generally an indication of diabetes something that has never ever been a concern in any testing I’ve had. What was curious about my results was my sugars were low, if I was diabetic they should be high. So ketones and low sugar was confusing for the hospital staff. Eventually after three quarters of a bag of saline I managed to provide a few milliliters for them to retest.
While we waited for the test, the Hubs and I talked about our Paleo diet. We ate low carb, with very little sugar. I had been Paleo since 2011, it was my New Years resolution. I had moved to eating more fats and was told that eventually you can train your body to use fat as an energy source instead of carbohydrates. I had read that a lot of elite athletes train their body to become fat burners because that helps with endurance (no sugar highs and lows). I had noticed that I never had sugar crashes anymore, when I travelled I made it a fast-day and never felt hungry because my sugar level didn’t fluctuate and wake up the insulin monster. Then it occurred to us that because my diet was so low in carbohydrates I was burning fat and excess ketones were being excreted in my urine. I was so proud, I had trained my body to use fat as an energy source and had proof. I was a fat burner (just like those elite athletes!). I heard one of the nurses quietly say, “I wouldn’t be happy to have ketones in my urine.” I dismissed her comments, I didn’t have diabetes, I was Paleo and damn proud of it. If my ketones were =20 a few weeks ago, they would be the same today because I have not changed my diet. So when the test came back =20 it was no shock to me (us). The hospital staff seemed a little concerned, I panicked that they may delay surgery. I then got a little angry. If they delay surgery because they didn’t understand dietary biochemistry I was going to be really pissed!
It must have been around 10:30 am when Dr Schwartzberg came in to say Hi before the surgery. She was swarmed by the hospital staff because “OMG!” there were “ketones” in my urine. She brushed them off saying it was dietary, nothing to do with diabetes! Oh, did I say I love Dr Schawrtzberg? I think I did, but this was another reinforcement that I had the right surgeon for me!
Surgery was delayed until noon. I’m not sure if it was because of the ketone episode or if Dr Capraro was running late with his first surgery. When it was time I said goodbye to Chris and was wheeled off to another area of the hospital. When I said goodbye to Chris there was a very small part of me that hoped I would see him again, I hoped I would wake up and there would be no complications. I was trying to be positive so I dismissed those thoughts, but I did have them, I could die.
The surgery room was a long way away, my gurney was wheeled down corridors, we were in an elevator and then we got to a cold room with big lights. Wow, this is a cold room…….and that’s all I remember.
Someone was talking to me. I felt a little irritated, I was in such a nice sleep. Wake-up, they kept saying softly. I tried, I really tried to open my eyes but it was really difficult. I wanted to sleep, I was struggling to open my eyes. I looked up and saw Chris smiling. He took a photo and I think I gave him the thumbs up. It felt like he put his head right in front of my face, and then he was gone. Apparently he had been a little too animated and happy to see me, so they took him back to the waiting room while I stayed in recovery for an hour or so, I really have no idea, I lapsed in and out and really only fully woke up in the hospital room. It then occurred to me, I had woken up. I didn’t die. I was really happy.
In the hospital room I heard voices saying she’s doing really well, she’s so fit. She looks great. Chris was there and he told me my sentinel nodes were clear; the cancer had not spread.
I was comfortable, no pain. I had my own room and all was good. I felt bad asking Chris if he could find out if he could say in the room with me overnight, but when he said he would, I felt very relieved. I hadn’t realized how important it was to me not to be alone. He asked a nurse if there was anything to sleep on, she said she would get another bed.
Someone came by asking what I wanted for dinner. Really? I can’t remember how the conversation went, but I got the feeling it would help my stomach if I had something in it. There wasn’t much on the gluten free menu, but they suggested vegetable soup. I’m not a soup person, but it sounded good. The only other 2 things I could eat was a side salad or a brownie. Hell, I’m having a brownie!
When the soup came it tasted wonderful, and when I started eating the brownie it was great, it was the best tasting gluten free brownie evah! I lay there eating the brownie thinking I had made the best food decision ever. I was so relieved and happy I had got the surgery over with, I was not in pain and I was lying in bed eating a freakin’ brownie, it doesn’t get much better than that! I reached to get the water bottle. I reached and my arm let me. I pulled it closer to me and drank a sip of water. I could move my arms, I was not a T-Rex. I was sure I didn’t have much strength, but I had way more motion than I had been led to believe. Life is awesome! I got this!
Chris ran home to get me some bone broth. You know, when you’re Paleo you drink bone broth because it helps everything. I had filled many mason jars with bone broth over the last month just preparing for my recovery. Drinking some bone broth would mark my transition into the recovery phase. Did I say I was happy? I was so happy with everything, my planning, my recovery so far, my choices. Thinking back I now wonder what it was that made me so happy that night. Was it drugs or was it relief. Either way, it was a very nice experience.
A little later I was reminded that I had been catheterized, it felt a little weird. I asked if it could be taken out, y’know, I’m not in surgery anymore. The nurse suggested I try and walk because if I needed to pee overnight I would need to walk. When I looked down at the collecting bag it was dark green! They had used a blue dye to check perfusion and now it was draining out of me, along with the radiation from earlier in the day. Apparently my face was a little green, I was green all over. I couldn’t see it, but admittedly, I was not firing all all cylinders.
They brought a frame for me to hold as I walked and put it by the side of the bed. I gingerly slid off the bed and stood up. I immediately regretted my decision to walk. I felt sick, I grabbed a green baggie and vomited in it. There went the brownie. I felt a lot better (brownies aren’t Paleo, that was my stomach reminding me). I started to walk slowly. I was heavy and everything was an effort. I started to shake, my hands shook violently. Chris had a concerned look on his face, but the nurse just calmly asked me if I was okay. I was, I was also too proud to get back into the bed, I was was going to walk to prove I could. I walked very slowly out of the room and down the corridor to the nurses station and shook uncontrollably. I thought that was a respectable distance to go and told them I was going to turn here. I walked back got back into bed and decided to keep the catheter in. I’m good, but I’m not superwoman.
From time to time a nurse came into the room asking me if I needed pain medication. I think I always said yes, but thinking back I’m not entirely sure I needed it so frequently. I was also aware that pain meds wear off slowly, and there is a ramp-up time for the next dose, so may be it was overlapping well enough for me to not feel that much pain at all. I told Chris that this was a much better experience than my reconstructive knee surgery where I had excruciating pain and couldn’t wait to go home and use some left over pills from a root canal. Comparing the two was like night and day.
By midnight the nurse hadn’t found a bed for Chris and he had decided he would sleep in the chair. The nurse did not give up and eventually found a bed at 12:30am. I felt a lot better about Chris having a bed, though I had forgotten that we would have people coming into the room all night, so neither of us slept very well. The nurse who kept checking my pulse and blood pressure was my favorite interruption, each time she would tell me what my numbers were, and then say “That’s good!”