#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)
<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>
#TalkNerdyToMeLover's Serena Neff
Also titled, “I will not pee the bed.”
Today is the first day post surgery that I have been able to focus and type, two things I had taken for granted previously. The pain has been excruciating, not enough drugs and there isn’t a single position I can sit in or rest in that provides any comfort or relief. I spent yesterday counting the hours until I could take another pain pill and trying to sit as still as possible; every breath hurts. With the lumpectomy, my chest was comfortably numb after but with this surgery, I can feel everything. Something wasn’t just removed during my mastectomy but for reconstruction, something was added. And no, it didn’t end up being just a nice soft comfortable gel implant. We had to take the extra-pain-extra-surgeries route. I shall explain soon enough.
We flew to Oahu on Tuesday morning, arriving at the hospital at 10:15 am for surgery at 12:30 pm. The day before I was feeling sorry for myself, resigned to fate, relieved to be taking the next step. Life is often about perspective. My perspective at that point was, why do I have to deal with this, all of this, when so many of my peers get to worry about work, weddings and babies? This is based on the general consensus and not everyone’s own personal goings-on, so again, as the blog rules go, do not be offended. I know we all have our shit. But I get to feel bad for myself here and there and Monday was a good day for that. I want to be spending my stress and worry hours on my career and relationships and normal 20-something life, not on my health, not on dealing with cancer and healing. I’m a classic multi-tasker and I’m bored with this one step at a time health crap.
The resigned and relieved feelings were welcome after that. To think I could go in to surgery and potentially cut off the cancer and be done with it was lifting. But I was also resigned to the fact that this is really my only option, if I wanted to have a strong quality of life. If I had opted for another lumpectomy, there would be a good chance we wouldn’t get all the cancer cells and there would be a good chance it would come back. And there wouldn’t be much boob left and it would look weird. I live in Maui! I’m a marine biologist! I live in a swimsuit! I cannot have that aesthetic discrepancy on my mind. And thank God I have insurance and that it covers all of this. (Yeah, if you don’t have insurance, you might want to rethink some things).
So I had finally accepted that I would be amputating my breast. To me, boobs have always represented two very important things: femininity and motherhood. Now, to me, they have come to represent pain, sadness, loss, suffering, anguish, fear. But also, life. If I accept that one has to go, I may get to keep the other (so far it’s still healthy) and, more importantly, my life. I am not any less able to be feminine or a mother because of the loss of my breast. But it’s always hard to sacrifice a bit of body–of who I am, of what the bit represents–even if the result is survival. Man, I really hope the pathology reports come back saying that we got it all. If they don’t then I would probably have to have radiation (that would mean the cancer went deep enough to reach my pectoral muscle tissue). There’s still never going to be a guarantee that my left breast will stay healthy. But I’m hopeful that it will, and with lots of follow-up imaging and testing, I want it to stay that way for a few babies in my future. Natural options are important to me.
Pre-op was very different than Maui. In Maui, I had a private room; in Oahu, I had a private curtained section and could hear what the three patients next to me were going in for and when they had last peed and whether or not they had a living will. Hmm, I have given up my tight grip on privacy a lot these last few weeks but I think this is a good instance when privacy should be striven for and granted. I just wanted the drugs, the sleep, the shit to get done! I went through the changing, stowing belongings, answering lots of questions, a quick IV stab with lidocaine this time, hanging with parents and finally I was whisked away to surgery and I remember little.
Mom and dad and Sean told me it took about three hours (they had thought one hour would be all) and recovery took another several hours (oh, I do remember waking up to the pain and asking for lots more morphine). Dr. Gambhir performed the mastectomy, removing all of my breast tissue and nipple on the right side (all drains lead to the ocean? all mammary ducts lead to the nipple and since cancer hangs out in the ducts, the end of the trail had to go to). Then Dr. Nishikawa came in to “begin” the reconstruction (remember, many surgeries in my future). He placed something evil known as a “tissue expander” in the space. Oh, yes, it’s the horrible gruesomeness I referred to in previous blogs. It was placed under part of my pec muscle at the top and then cadaver tissue with the DNA removed was placed around the base. This creates a pocket and extra padding for the future implant and allows for the space to be expanded over time to fit the implant; since the nipple and some skin was removed, I don’t have enough space to fit a implant right now. Yeah, not quite the easy out, easy in I had hoped for. I think this is where I get to say FML (fuck my life). This is gross just thinking about it. And it’s in my body. Note to all: don’t get cancer, it sucks.
I woke up in recovery and they wanted to know my pain level from 1 to 10. And what’s my comfort number? I don’t need drugs if I’m at five. But I think I was at 8 or 9 and so I got a lot of drugs. And it went like that for many cycles of waking up and sleeping, which to me was about fifteen minutes in all but was actually many hours of time. It hurt so bad I couldn’t breath right. Inflating my lungs hurt. Finally around 7 or 8 pm I was stable enough to go to my room. My parents found me (communication was not great in the nurses letting my family know what was going on) and off we went. I proceeded to get lots more drugs in my IV, antibiotics, saline, etc and some dinner (that part not in my IV). Most importantly, I got to watch TV! I haven’t had cable for years so I watched all the trash I could: E!, Kardashians, Price is Right. The good stuff.
My personal goal was to not pee in my bed! Even though I was allowed to. Hell no I did not want a catheter and I couldn’t fathom trying to pee in a bed pan (seriously, how would that even work?!). But I had to pee. So the nurses helped me get up and walk to the toilet (3 feet away!) and I peed all by myself! Ah, the joy of accomplishing a goal. Not quite the same feeling as scuba diving the Great Barrier Reef in Australia but, it’s all that perspective. And my nurse wrote my other goals: “pain control, no nausea or vomiting.” Good! Technically, I am allowed to puke on someone. Or rather, they can’t get too mad at me if I puke on them. But I’ve worked on boats for years and dealt with my fair share of seasickness (and general crabby people) so I did not want to continue that horrible scenario (I didn’t want to pay the vomit forward if you will) if I could help it. I wanted someone to enjoy a vomit-free day, or at least a vomit-free patient. I vowed not to vomit and I succeeded! As I was leaving the next day, they termed me the independent patient because I insisted on peeing in a toilet. It’s kind of like a gold medal at the Olympics.
My parents left around nine and not too long after, I got a roommate. This lady was a character. She was constipated (the reason she was in the hospital) and had cancer too. She would say nice things to nurses and then call them all the time, saying “ooch ooch ooch” in loud rapid succession. It was a constant procession to her side of the room, plus that no privacy thing. I found myself trying to figure out her life. What was her ethnicity? She had an interesting accent. How old was she? She looks old but I know she has a ten year old daughter… Hmmm. What does she have? Who is she?
The night passed uneventfully for me, exciting for the bed next door. Staying overnight in a hospital is like having a sleepover. No one really goes to bed. We all sleep for a few hours at a time. But there are always nurses coming and going. Vitals are taken every few hours and drugs are administered every few hours in between. The doors stay open so I could hear other patients. At one point, the person in the room next door was yelling “help” and since no one came, I pressed my nurse button and sent the message on. New perspective: OK, life isn’t that bad, I can still press my call button but look at all these other people in recovery, they probably have it worse. Leave it to being in a hospital to change my perspective, at least for the time being. I couldn’t read because it hurt too much to move and my brain was too spacey. More TV and peeing to pass the time.
I could have stayed another night in the hospital but I just wanted to be home, to see Sean and the dog, to be in my own comfort zone. Traveling home was painful as was the first night back, but it’s getting better. I got the premier treatment via wheelchairs but any bumping and/or movement hurts. I like to sleep on my side but I cannot. I’m learning to use ab muscles and they hate me. I move like an old lady. Yesterday I had to switch books from something semi-educational to a mindless novel because I cannot concentrate or process a lot of info (brainless is making me feel smart again!). I glare at the phone when it requests my attention (sorry, friends, I’m almost there). I have a very fashionable right side pony tail because I cannot lift my right arm all the way. I am learning to be ambidextrous because it hurts to use my right arm too much; I’m also learning to balance my food on the fork as I slowly bring it to my mouth. I am forever thankful to my caregivers, mom, dad, Sean, puppy. I wanted to write but couldn’t until today. And we’re sticking with the facts for now, maybe I can put one song in here for some fun. I just wanted to get you all up to speed. And I need some more drugs (trying just Advil!).
And I’m still trying to suss out all the good in this and focus on the humor in this, where applicable and when possible. Believe it or not, one boob the less, I still cannot believe this is happening. I mean, it’s happening, yeah, I know. But, really?
#nerdsunite
click here to check out Serena's blog. Very powerful stuff.