Before my surgery I met with my plastic surgeon to discuss my reconstruction options. I sat with her in a small room and combed through the plan for the upcoming year. During that time they explained to me that part of my surgery in January would be placing expanders in my chest to stretch my skin in order to preserve it's elasticity through radiation for my future reconstruction. My plastic surgeon showed me what the expanders looked like and let me touch them to understand what exactly was going in my body. Then I signed a waiver saying I agree to let this process happen. Well let me tell you, expanders are far worse than anything I ever imagined. They are football shaped objects made of thick plastic material that are placed under the chest wall muscle. For the last two months I have gone in twice a week to fill my expanders with saline to expand my skin and chest wall. Now you may think, saline can't be hard, surely it isn't that bad, but you would be completely wrong. When the expanders are filled they feel like footballs in my chest. Instead of my chest hurting (I have no nerves in my breast to feel it) I felt ALL the pain in my back. I could barely get through a day without feeling crippling tear-wrenching pain in my middle of my back. Pain medication helped but only for a few hours and when I went back to work a few weeks ago pain medicine was not an option. At one point during my bi-weekly visits to get the expanders filled I broke down in tears in front of my nurse. For four weeks I endured pain I do not wish upon anyone. When I met with my radiology oncologist a few weeks back she informed me that they would deflate my expanders before radiation in order to make sure the beams could hit the correct areas needed. Let's just say I was counting down the days till radiation. Last Friday the plastics nurse deflated my expanders and I swear it was instant relief. This relief however will be short lived because after radiation they will have to re-inflate them for six months until my skin can fully heal from the radiation to do the final reconstruction. I am trying not to think of that right now because I do not know emotionally and physically if I can handle that pain again.
After they deflated my expanders I went in last Monday for my radiation simulation. Now being the science geek that I am, everything about this year has been super interesting to me. I have learned so much about myself and other sciences it has made this whole experience almost tolerable. Also, every doctor I encounter instantly relates to me because they love my tattoo! In fact, some doctors know who I am before I even introduce myself. I knew my tattoo would come in handy one day. Monday's simulation was no different. A radiation simulation is a really cool process. First, they laid me on a table that had a blue mat underneath my upper chest and head. I had to place my arms over my head and grab hold of a metal rod above me. Then when I was in place they pulled two tabs on the blue mat and the chemicals inside of it mixed and reacted. The blue mat then foamed up and hardened around my back, neck, head and arms making a mold of me. Now every time I go in for my radiation I will fit into that mold perfectly to make sure the beams hit in the same place every time. After they made my mold they ran me through a CT scan and took pictures of my placement to send off to a dosimetrist and physicist to evaluate my exact plan of treatment. I never knew a physicist played a role in radiation but now I am interested to know more. The radiologist technicians told me it can take 1-2 weeks for the physicists to map out a plan of treatment so right now I am just waiting for a phone call to tell me when I will start radiation. It will be any day now. As of right now, my radiation will be 28 days (Monday-Friday) or as one of my friends at work said, "one menstrual cycle." I am hoping it is a piece of cake. Not sure it could get any worse than the past few months.
As I mention I have shed more tears the past two months than I have through this whole process. Constant hot flashes, neuropathy in my feet (to the point of not sleeping) and pain from the expanders and surgery have tested my sanity to the point of breaking. I know it is cancer that can kill me but it feels like I have put my body through so much hell to fight the disease and have yet to feel an effect from the disease. Cancer is a sneaky little jerk. I really do want to punch it in the face! The latest negative effect from my treatment came after my surgery. During my surgery my surgeon removed 21 lymph nodes from my left armpit. For those of you who do not know, lymph nodes help the immune system. They play a role in fighting infections. When a person has fewer lymph nodes it takes longer for that area to drain the infection or inflammation which can cause permanent swelling in that area. Since I had over 50% of my lymph nodes removed from my left armpit my lymph nodes have to work twice as hard to fight swelling or infection. This leaves my left arm more susceptible to Lymphedema because it cannot drain the fluid fast enough. Lymphedema is swelling of an area affected by the loss of lymph nodes. In my case it would be my left arm. Since my surgery I have been going to a physical therapist to help minimize my risk and learn how to control it in the future, however, last Saturday I screwed up. My physical therapist has warned me that anything that can cause swelling (normal) of my left arm can trigger a flare up. That could be activities such as lifting weights, getting a bug bite, wearing my purse on my left shoulder, or even carrying my grocery bags on my forearms. I have been cautious of the long list of things to avoid but last weekend I slipped up. On Saturday I was so excited to finally be able to take my dogs for a walk (since I have mobility in my arms again) that I did not think twice about the precautions. I wrapped my dogs' leashes around my wrist (they pull while they walk) and went for a quick walk. When I got back inside and released the leashes the fluid in my arm rushed to my hand and wrist and caused it to swell a little bit. I immediately panicked and started doing my physical therapy to help drain the fluid from my wrist. Luckily the swelling went down but I knew this was going to be an ongoing problem. Wednesday I met with my physical therapist and she was concerned that it will be a bigger problem during my radiation. She suggested I wear a compression sleeve and gauntlet throughout my radiation to help prevent anymore flare-ups. Yesterday I went and purchased such sleeve. It definitely put in perspective that no 28 year old should have to deal with this, but it is better than having an arm the size of an elephant's.
I know the saying "April showers bring May flowers, but when it comes to tears I have decided not to shed anymore starting April 1st. I had lost control of this alien-disease the last few months, but not anymore. My goal the month of April is to set challenges for myself in ways that will give me back control. As I mentioned in my last post, I want to enjoy Seattle spring and get off my couch. One big goal I have, and I hope I can stick to it, is to run a half-marathon this coming November. Anyone who knows me knows I am a terrible runner but that is why I am doing it. If it was easy I would not be in control; it would not be a challenge. I want to challenge myself. I want to prove to myself I am stronger than my physical limitations. Another positive coming this spring is my hair is growing like wildfire. I now wake up with bedhead in the morning! Who knew bedhead would make me so happy. I am also looking forward to next week when my sister comes to visit. Last time she was here was during my chemo and we did not get to do much exploring. This time I am hoping the weather will allow us to go on some adventures. I am so excited!
My last plug of this post is a shout out to all the wonderful people at KCP&L (my mom and Mike's work). Through the month of December and January they had a fundraiser to help me pay for my medical bills. People I have never met reached out to support me. They raised $10,000 just like that. It is people like this who keep me so optimistic in this fight. Not necessarily because they donated money but because they are standing next to me and my family in this fight. I always see signs around SCCA about how it takes a community to fight a disease and I could not agree more. I am not sure where I would be in this fight without the support and love from my friends, family, students and strangers. It is so remarkable how powerful love can be.
