A Long One.
Hi! Recovery is going well. My chest looks like a war zone. Completely bruised and stitched and bloodied and the partially inflated expanders are so strange looking. Since they're not full you can see the bumps through my skin. It looks like someone knifed a couple of mini kickballs and shoved them inside of me.
Yesterday I went to the plastic surgeon for my first post-op follow up and he removed all the packing, the sponges, the battery packs/wound vacs, and 2 of the 4 drains. I was really hoping everything would come out, so I'm disappointed I still have two left to go, but it does feel good to at least have some of it off of me. It was unnerving to have all those things hanging out of me. It was hard to sleep and cumbersome to move around. The battery packs were heavy. I bought a "recovery apron" from amazon ahead of time so I had them in pouches tied around my waste for 8 days. A woman I met at the surgeon's office (who had a bilateral mastectomy two years ago and now raises money to support the center) sent me a giant maternity pillow that was so amazing. I don't know how I would have slept without it. It kept me from rolling over and crushing my drains while sleeping. (She also sent me a kickass pair of leggings from Alala, a super-fab activewear clothing line that also happens to be a big supporter of the cancer center.) She's been an angel- checking in on me, telling me what to expect, reassuring me. This might sound weird, but she let me see and feel her implants. I burst out crying because they were so "normal" feeling and looking. When I was leaving she hugged me and said I'd better call her since she let me get to second base. :D
I took a picture of the drains and packs. It's kind of gross. I posted it elsewhere on the site so you wouldn't be forced to look at it if you don't want to. Click here at your own risk. My very smart mother thought ahead and brought 6 or 7 oversized short sleeved button down shirts- oversized so they'd fit all that stuff under them and button down because I can't lift my arms over my head. Good thing I don't have hair to brush or wash. No just kidding. My mom would have done it for me. She's incredible. She's been here for a week and a half, since last Sunday night, doing everything for me. She's been helping me empty my drains (gross), cooking me food, answering the door (to receive all the flowers and presents everyone sent!), doling out meds, helping me shower, helping me get dressed. Seriously. My mom is super woman.
A lot has happened since I did a real update so I'm going to back track and tell you all about the last few weeks.
I had been going to see the nurse who facilitates the meditation/yoga/reiki program once a week to prepare for the surgery. I felt like I was pretty ready, confident in my decision and confident in my doctors. But, the second I got the date confirmed for May 1st, the fear became almost overwhelming. Logically I knew everything would be fine. Spiritually I knew everything would be fine (God's got me!) But emotionally, every time I thought about, I started to well up. Luckily, I went back to work as soon as the chemo effects from the last infusion started wearing off, so I was keeping busy and able to focus on other things. This kept me sane.
David's mother suggested that since I actually was feeling okay after 4 and a half months of hell that we should take a mini spa getaway together to calm me down and de-stress my body before the surgery. In other words, take advantage of this (small) window of normal before all hell breaks loose again for who knows how long. So we booked a last minute two-day stay at the Kimpton Hotel Eventi in Chelsea and loaded up the days with a body scrub*, a moisturizing facial, and massages. We also ate a few great meals at Lupulo, The Vine, and The Harold. I felt super spoiled and very relaxed.
*The scrub was so necessary because the skin on my chest, shoulders, and back started to break out in little tiny blisters and then peel, like a mild sunburn but with no pain. While we're on the subject, my fingernails are still kinda gross and a few are loose/coming off, but a friend's mom who has been through this suggested "Hard As Nails" to keep them on while they grow out so they don't actually come off and it's a life [nail] saver. Yay!
I went to one last surgery prep with The Nurse and she gave me a good luck bouquet of purple calla lilies. I had two wedding showers that weekend. After the first one, I walked all the way home because it was beautiful out and I was so happy to have energy. It was a mile and a half. It's dumb but I was proud. Three weeks before that, three blocks made me out of breath and searching for a bench to rest on. I'm healing quickly. For the second wedding shower, I blew the surprise. The bride-to-be called me as I was getting ready to leave on Sunday and I said, "Oh hey! I am just about to walk out the door!" And she said, "Where are you going?" And I said, "to come see you..." Silence. "What? Where?" "Umm...to this thing in Manhattan..." (&$@#%!) In my defense, she already had her suspicions and more importantly, no one told me it was a surprise! When I got home from the shower on Sunday, my mom was already on her way.
I had to be at the hospital by 11am the next morning. David's mom came at 9:45am. My mom, David, and I hopped in her car and we all went together. My mom and David took turns coming with me for the prep. First I had to sit with a nurse and answer 1000 questions. Then, I had to get a radioactive injection that would highlight my lymph nodes. The doctor who did the injection had to initial my chest in permanent marker. After that, I went to radiology to get an ultrasound. They were supposed to locate the lymph node that had cancer in it by finding a small titanium clip that was injected directly into it back in November. Once located, they'd insert a radioactive seed into the same lymph node so my surgeon could find it during surgery. I laid on the table and watched the screen while the technician ran the wand over my armpit again and again and again. She seemed stumped. She left and came back with the radiologist. Now, the radiologist also watched the screen and gave directions while the technician tried again. Then, the radiologist tried doing it herself. Then, they brought my surgeon in and did it all over again while SHE watched the screen and directed. Then, they gave up. They couldn't find the clip, so they couldn't mark the lymph node. My doctor explained that it happened sometimes. It could be good news because it meant the lymph node shrunk so much during chemo that it extruded the clip and not to worry. I was worried though. I knew she'd be pulling out lymph nodes and I knew they would biopsy them immediately and I knew that they'd also culture them for a week to make sure nothing grew so that we could be sure that not a single cancer cell was left. But, isn't the one that we KNOW had cancer the most likely to have a few cells still hanging around? Like, we know it shrunk, but how could we know if we totally killed it? Maybe it shrunk all the way down to 3 cells so it looked normal but those little bastards were still lurking around in there. I was upset. I was afraid that even if I got the all-clear, I'd never feel safe until the cancerous lymph node was removed and now we couldn't identify it.
David was with me in the room during all this. He hugged me and reminded me that the doctors know what they're doing and that God works in mysterious ways. I remembered what one of my friends said the night before and did feel a little better. She said that God is using the surgeons' hands to heal me. So, the surgeons' hands are God's. I'm in good hands.
After that, my plastic surgeon came in and checked on me. He used a permanent marker to draw lines where the incisions would go and then to initial both sides of my chest. The oncology surgeon came back and reassured me that not finding the clip was okay and she initialed my chest also.
And that was it. I sat in the waiting room in my gown and gigantic hospital pants with my mom, David's mom, and David. I'd been praying, meditating, prepping for weeks. Everyone I knew (and thanks to Facebook, even people I don't know) was praying for me and sending me healing vibes and love at that very moment. My chest looked like a high school year book, all signed and marked up. I was totally ready. The anesthesiologist nurse came out and talked to me. They brought me back to the OR and let me keep my beanie on which made me really happy. I handed the sheet of affirmations to one of the doctors and they were totally game for whispering sweet nothings ("You're doing great. You're going to heal very quickly. Everything is going well.") to me while I was under. I laid down, they covered me in blankets, put the IV in. I waited for my freelapse (That's a sober-people joke. It's the 3 seconds of "high" you feel right before you pass out into a legal, doctor-ordered, medically necessary, drug induced sleep), and I passed out.
I was in surgery for 4.5 hours. When my oncology surgeon was done her part, which was the lymph node excision and breast tissue removal, she came out and updated my family. She had removed only 5 lymph nodes. At first look, they were cancer free. They still had to do the cultures, but she said they could be "cautiously optimistic." The plastic surgeon came out after he was done with stage 1 of reconstruction and said it went perfectly.
When I woke up in recovery, my mom and David were there and as instructed, the first thing David said was "You did great!" and the first thing I said was "I feel great!" even though I didn't. Actually, I threw up. But I got that and the affirmations that my doctors used from Peggy Huddleston's book "Prepare for Surgery, Heal Faster" which I'd been using to meditate and prep for the preceding 4 weeks so I was sticking to the plan.
They set me up in a hospital room. David and my Mom both slept there with me. I was wary of pain meds but I was in a lot of pain (my breasts had just been scooped out like a bagel, remember?) I flat out refused the PCA pump. THIS patient should not be in control of her own pain meds. I had originally spoken with the doctors about the possibility of using tramadol instead of percocets, but the tramadol could interact with another med I'm on and cause seizures. So they wouldn't prescribe it and I went with percocets. I was allowed 2 every 4 hours while I was at the hospital. I took 1 about every 6 hours. Upon leaving Tuesday afternoon, they prescribed me 24 (!) and said I could call if I needed more (!) David picked them up for me and I handed them over to mom, so I'd have to go through her. I stayed on the same schedule of 1 every six hours or so. I took my last one (a half of one actually) Wednesday night, told my mom not to give me anymore even if I asked, and switched to Tylenol. I went through 4 and a half of the 24 pills prescribed. My mother properly disposed of the rest. Luckily, I have a very strong spiritual practice that keeps me connected to God and my sobriety. While I was in enough pain to only feel relief from pain from the percocets- no loopiness or high- I did notice things happen that reminded me too much of the bad ol' days. First, after my first one at the hospital, I started thinking that maybe I should tell the nurse to give me two every four hours even though I only needed one because what if I need it exactly 4 hours from now and I can't find her? What if wore off after 2 hours and I needed another? They said I could have two. Why shouldn't I have two? Second, when I got home, I had a feeling of relief that I had access to 24 whenever I needed them, like a sense of security- similar to how I felt when I had an unopened backup bottle of whiskey or a fully stocked wine rack. I also started an argument in my head over that. "Alcoholic Faith, you can only have them until the worst of the pain subsides." "But Sober Faith, they gave me 24. I get 24. It's not fair that I shouldn't get all 24. Everyone else can have 24." And Alcoholic Faith also lamented the waste: We can't throw the rest away. Someone else should get them. Who can I give them to? Or what if my pain comes back worse and this is just a lull and I NEED them?
What's interesting/scary about these thoughts is that I am not fully aware while it's going on. They kind of creep around at the edge. Insidious. I didn't even recognize it until Wednesday night, which is when I cut them off. Thankfully I have tools and I know the symptoms. While I consider myself a recovered alcoholic and I'm not walking around white knuckling it, I do need to remember that my sobriety depends on vigilance. And not in the way you are probably thinking. I don't have to fight with myself to stay sober. I can sit at a bar with friends and order a seltzer with no anxiety. I can sit at the dinner table while everyone around me drinks wine without feeling like I'm missing out. My vigilance is directed toward my character. Am I living a principled life? Am I helping other people? Have I connected to God today by praying and meditating? Is anything lurking around in my head blocking my access to light and love? Am I selfish? Am I grateful? Can I find a way to be grateful for everything, yes everything, even cancer? And, I don't do it constantly and sometimes I can't answer those questions the way I'd like to. And lately, it's been hard to not be self-centered. Lately, it's been hard to put other people before me. And it's been hard finding people who could use my help, because everyone wants to help ME right now. But, I try and I'm ready and when it's time to look at myself, I have to be willing to see the ugly parts so that they can be changed. Because if I'm not willing to change, nothing will ever change. And that is how I stay sober. And that is how a little bottle of pills won't bring me down.
So you're pretty up to speed. My birthday was on Cinco de Mayo. I turned 38. I got lots of texts and calls and flowers and popcorn. My sister came up and surprised me on Wednesday. She drove 3 hours each way to see me for about 2 hours. That was awesome. My Dad and my niece came to visit on Sunday, also awesome. I'm going back to the doctor Tuesday to (hopefully) have the last two drains pulled. He won't even discuss my going back to work until the drains are out. So, I'm still working from home. Today, I'm going to see the oncology surgeon and should be getting the results of the cultures. Cross your fingers! We can be cautiously optimistic.
OH and oh my gosh I forgot the best part. I got a notification today from the hospital's lab that there was a new report waiting for me in my patient portal. Know what it said?
"Blah blah blah...FINDINGS: Specimen radiography demonstrates a lymph node containing a biopsy clip."
They found the clip in one of the lymph nodes! She pulled the cancerous lymph node. Screw cautious. I'm so freaking optimistic!
Leaving the hospital the next day in one of the giant button downs. Dave's mom came and picked us up and brought us all home.
P.S. if you were reading my list my alcoholic thoughts about prescription drugs and were like, "hmm I see nothing odd about these thoughts." Maybe check out this article by my good friend, Helaina.