Phase two of karate chopping cancer has been the hardest thing I have ever had to do. I have mentioned this before but I am a serious control freak. All through chemo I had control, I never once gave in to this alien disease, but the past two months I have lost all control. Seattle is known for rain but lately it seems I have shed more tears than it has rained. As some of you may know, my dad passed away from pancreatic cancer seven years ago. He was diagnosed on a Thursday and passed away that Sunday. He was never given the chance to fight this alien disease. Back then I thought his passing so quick was a blessing compared to the suffering he may have endured for so long. Now I am not so sure I feel that way. I have mentioned it before but I am fighting this disease for everyone who loves me; that includes my dad. I want to fight the fight he was never given. I want to show him the Ruge's are stronger than any obstacle put in front of us. He conquered many obstacles in his life and I want to make him proud by doing the same. Lately I have been listening to LCD Soundsystem "Someone Great" and find it a fitting tribute to him.
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.
I know I know it has been so long since my last post. I would like to say it is from the lack of sleep, or the intense pain I am feeling or the pain medicine that I have been hopped up on for weeks but I have also waited for more answers. After my surgery there were a bunch of unknowns. I wanted more answers before I explained it all to you.
As I sit down to write this post I am singing Destiny's Child "Survivor" out loud at the top of my lungs (or at least the chorus part of the song). Man do I love the 90's! Wednesday marks six weeks post surgery and although I am getting cabin fever I am doing really well. I cannot wait to get back into a normal routine (I go back to work Wednesday) and enjoy the sunshine that comes with Seattle spring. The past six weeks have definitely been interesting and at times very testing but each day that goes by is getting easier.
The day before my surgery I picked my mother and grandmother up from the airport. They both came to support me through my surgery and beginning of my recovery so Daniel would not have to do it alone. Going in to my surgery I wasn't scared, worried or nervous. I am not sure if it was because I accepted my surgery as something I needed or if I was still in shock and not fully aware of how it would change me. I am not sure there is anything that could prepare you for a life-changing surgery so I just went in with positive thoughts and a sense of humor.
The day of my surgery we had to be at the hospital at 6:30 a.m. When we arrived they took me back to a pre-surgery room filled with tons of beds with many people preparing for surgery just as I was. It was a weird feeling being completely exposed but I had Daniel and my mom at my side to ease my mind. For the first hour (everything seems sort of blurry that day) they took my vitals, prepared an IV and discussed exactly how the day would play out. Around 8 a.m. they wheeled my bed into the operating room put me on a the operating table and then that is all I remember. I didn't even realize the anesthesia worked so quickly. Next thing I remember was going in and out of consciousness 6 hours later and throwing up from the anesthesia. I am not sure exactly when I finally regained full consciousness but I know once I did they sent me up to my recovery room with my family. The rest of the day I slept with nurses occasionally waking me up to give me medicine or make me use the restroom. It wasn't until the early hours of the next morning that I was awake enough to really understand what was going on. During my recovery my nurse taught me how to empty my drains and explained what I needed to focus on in the days to come for my recovery and later that day I was discharged from the hospital to go home.
The first week home was rough in my recovery. Taking care of the drains was a nightmare and sleeping upright was not ideal. I am so glad my mom, Daniel and my grandmother were there and so patient with me through it all. That week I had my post-op appointment with my surgeon. At this appointment I was able to get my drains out and she explained my pathology report to me. Now in my last post I explained how my oncologist explained to me that I may need to have more chemotherapy after my surgery because my MRI showed a mass still in my breast. She said since it seemed like I had not responded to the chemo as much as they had hoped that more chemotherapy may be necessary. She told me she would know more after the pathology report came back. Well on that day I met with my surgeon and was given the good news. The pathology report showed that I had a complete pathological response. All the spots that once had cancer in them now show no residual cancer. Then on February 28th my oncologist told me I don't have to have more chemotherapy! She then prescribed me Tamoxifen which I will now take daily for the next ten years. Countdown till February 28, 2024 in full effect.
During my surgery the plastic surgeon placed expanders underneath my chest muscle to stretch my skin for my future reconstruction. In the past few weeks I have been going in twice a week to the surgeon's office to have those expanders filled before I start radiation. Filling the expanders has caused immense pain in my chest and my back. The expanders are awful. They feel like odd shaped footballs in my chest. They are hard to the touch and limit the movement of my arms. My last fill is March 17th and then on March 21st they will deflate the expanders to begin radiation only to re-inflate them at the end of radiation until my next surgery. It will definitely be a relief when they deflate them.
Round three of this battle will start early April. I met with my radiologist last week and learned I will have an aggressive radiation treatment because of how my cancer presented in July. They want to make sure there is no chance for the cancer to come back. Radiation will last roughly 28 days or 5 1/2 weeks and will be daily (Monday-Friday). The main side effects are sunburn and fatigue which is nothing compared to what I have been through in round one and two of this fight. The only downer to round three is that it will be an inconvenience to go everyday to SCCA for radiation.
Well enough of the boring medical talk. As I said in the beginning of this post I have been singing "Survivor" at the top of my lungs since receiving my news that I was cancer-free. However, I have not celebrated as much as I probably should. I am still frightened it will come back. I am sure over time this uneasiness will go away but also over time I am scared it may come back. I am a young survivor which means I have many years of life ahead of me, but in that life I have more possibilities that I will get cancer again. I am not sure how I would feel about fighting this alien-disease again. I know I need to be more optimistic and happy and maybe when this is all over with I will be. Right now I am a weary optimist. Through all this I have learned to be more diligent in check-ups and monitoring my health. I want to live a long full life and I know no alien disease will stop me from succeeding.
I know this is a long chaotic post. I am frantically writing this before I leave for my next expander fill appointment. I promise now that that rough stuff is over I will post more frequently as I did this summer. I want to celebrate the life I am living and the fun I will soon be having. Like I said Seattle springs are beautiful and I am SO ready to get out of this house and enjoy it.
Time heals all wounds but how much time is really needed? I was recently chatting with an old friend I have reconnected with about issues we are both struggling with in our lives. We were talking about how much of a challenge it is to stay positive when it seems like your world is crumbling around you. We both exchanged great advice but deep down we know it is easier said than done. When it isn't your problem it is easy to address, but when it is your world crumbling you can't run to the light fast enough. It is so hard to move on or to forget the problem all together. The saying "time heals all wounds" is almost a slap in the face because sometimes time isn't always on your side or time just makes you think more and more about the issue at hand. I wish I was in the movie Inception. I could go deeper into inception where I have all the time in the world to battle this cancer and when I come out of inception my cancer is gone. In inception it may have taken forever but in real life ,which is what matters most to me, it has only been minutes or days. Time is what I need in this stage of my alien disease diagnosis. It has become a lot more complex than it originally seemed to be.
As you all know my last chemo was on December 13th and on December 22nd Daniel and I jetsetted off to Kansas City. We left our two anxious but lovely dogs with a friend (bless his heart) and enjoyed a week with family and friends. It was amazing! I got to see people I haven't seen in a long time (some ten years) and it was such a wonderful feeling to know I am loved by all of them. The week was filled with happy emotions but also sad emotions. It was wonderful to see everyone but it made me miss them so much more. For example, a few of my friends are pregnant and it makes me sad I am not there to support them and cuddle their babies. It makes me sad that the thought of children has to stay far in the back of my mind till this alien disease leaves me. I also struggled during my week in Kansas City because I didn't feel like myself and I didn't feel pretty. All the confidence I have been holding on to through this whole thing seemed to crumble a little bit while being home. Not because of my friends or my family making me feel less confident (it was actually the opposite) but because I had completed chemotherapy yet everything about me still reflects my struggle through my treatments. I know my hair won't instantly grow back and my energy will slowly come back but knowing I am done with chemo and not seeing the results or feeling like myself again is really taking a toll on me. I don't feel pretty in anything I wear and I am REALLY sick of trying to match outfits with hats. Ugh...cancer problems. Hahaha! I am sure I will get over it and as I see myself return to "normal" I will calm down, otherwise, I may resort to some anxiety medicine.
As I say "normal" in the text above I chuckle because I know I will never be normal again. My normal will become a reflection of this time in my life. I will walk around with scars and various permanent side effects barring a constant reminder of the trials this year has put me through. I need to find peace in those changes and know if they do define me it will only be in positive light. As I said earlier saying this is easier than actually doing it. Time heals all wounds and only time will tell how I handle my future. The future all these crappy treatments are giving me. Thank you crappy treatments!
Now for the tough news. The week before I left for vacation I met with my breast surgeon and this week I met with my plastic surgeon and oncologist to talk about my upcoming surgery. On January 29th I will have a double mastectomy. During my surgery they will do a skin sparring surgery by taking all tissue up to my chest wall from both breasts but leaving the skin. They will also remove a sack of lymph nodes under my armpit and place expanders in both breast to stretch my skin after the surgery for reconstruction at a later date. I will have three drains in after my surgery to get excess fluid out so I will heal properly. After my drains are removed I will have to go in once a week or biweekly to get my expanders (pockets inserted under my chest muscles) filled with saline solution. They are like temporary implants to keep my skin stretched and viable for reconstruction later. I have been told by my surgeon that filling the expanders will be quicker than usual so I can continue my treatments faster. Filling quickly will cause extreme pain (so I am told) and I may not be able to work during this time because I will be on narcotics and/or muscle relaxers. This whole stage will take about 6 weeks before I can move on to the next phase. During my recovery my mom will come down and help Daniel and I with daily activities that I will not be able to perform. I can't wait t see her. I miss her already!
It doesn't stop there. Shortly after my surgery I will receive a pathology report which will tell my exactly what type of cancer I have, how much I have, whether it is invasive or slow growing or both, how much cancer they got out and what the next step will be. At first I did not think this information would be necessary for me to know. I mean, I know from my last MRI that my cancer did not respond to the chemotherapy as much as they had hoped it would. I knew going into my surgery that they would still find a lot of cancer but today my oncologist told me news that really depends on what they find on my report. When I met with my oncologist today we discussed my MRI, my current health (side effects still lingering) and my future treatments. She first asked me about my current side effects. Currently I am experiencing swelling, weight gain (up 20lbs since this summer), sensitivity from my fingernails hemorrhaging, and constant peripheral neuropathy. She told me I need to start exercising (even if just walking on a tread mill will counter the weight gain the steroids have caused), my hair will grow back within 3 months and it is unknown if the neuropathy will ever go away. Again only time will tell because time heals all wounds. Then we discussed my MRI. As I mentioned earlier my cancer did not respond as well as she had hoped it would to the chemotherapy. She believes I have two types of cancer in my breast, invasive (fast growing) and non-invasive (slow growing). The invasive cancer responds best to the chemotherapy but the non-invasive doesn't replicate as fast therefore, doesn't die as fast. So where does this put me?
When I first met with my oncologist, surgeon and radiologist they gave me a set path for my treatments. Chemotherapy (4-5 months) followed by surgery (2 months) then radiation (2-3 months) and I would be cancer free and done. Man am I naïve. I have learned through this process the word "it all depends" is a logical answer. My path to being cancer free all depends on my progress. There is NO set path to karate chopping cancer. It all depends on how I respond. With that being said today I found out from my oncologist that after my surgery I will most likely have to continue chemotherapy for at least 4-5 months. It all depends on my pathology report but she said from looking at my MRI chances are high that chemo will again be in my immediate future. This time it will be a different type of chemotherapy. It will be a three medicine regimen, one will be a pill taken weekly, and the other two will be a infusion two weeks in a row and then a week off. My oncologist said the time frame for this treatment will be at least 4-5 months but it could extend for much longer (some patients years) depending on my response to it and my blood count. I can only hope for the best and again time will tell. Surprisingly when I was delivered this news I did not cry; maybe I am still in shock, maybe I am waiting for a final word, or maybe my strength and confidence is coming back. I will let it sink in a few days and let you know which one it really is.
After my oncologist discussed this new chemotherapy treatment she told me it may postpone my radiation. She said it all depends on how my body responds on whether I can do radiation simultaneously or if I have to wait till after chemo is over. My radiation timeline affects my reconstructive surgery timeline. I cannot have reconstruction till 6 months after my skin heals from radiation. I was also told that my only option for reconstruction would be a DIEP Flap. A DIEP Flap is when they do a tummy tuck and take the fat from my stomach to make new tissue for my breast. Implants are completely out of the picture because of the placement of my radiation my skin will not be viable enough for an implant. I am unsure how I feel about this reconstruction but I have lots of time to think about it since it won't even happen until next spring at the earliest. This new treatment plan has also changed personal plans I have longed for. I have known since the beginning that once I am done with all my treatments I will have to start a drug called Tamoxifen which I will have to take for ten years. While on the drug I can not have children because it suppresses the estrogen in my body so the cells that make cancer are blocked. Well now that I have to potentially have this new chemotherapy treatment that pushes my Tamoxifen start date to a later time. I know all of these drugs are extending my life by helping me become cancer free but it is also taking time from me to do some things I want to do (i.e. have children). This is extremely upsetting but I know it will all work out. I value my life and that is what I need to focus on now otherwise nothing else could happen.
With the phrase "it all depends" lingering, my proposed timeline for finishing ALL treatments as of right now (minus the ten year Tamoxifen) is at least another year. So this whole process before I can start thinking about remission looks to be about two years, but again it all depends. This crummy job of cancer looks like it needs me to keep working a little longer. I am such a great employee it can't survive without me. Time heals all wounds. I will continue to be strong and karate chop the shit out of this alien disease during that time.
