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.
The other night I was watching "Man vs. Food" on the Food Network astonished by how much food the host can eat. He starts his day by eating two or three famous and delicious looking meals followed by some outrageous challenge where he has to eat a large portion of his body weight in more delicious food. The host always starts out strong and eating through at least half of the desired amount as the crowd cheers him on in excitement. Then about a third or half of the way through the plate he hits a wall. The wall of panic. Will he finish or won't he? How can he re-strategize to complete this task and be victorious? Sweat pours down his face as he makes each and every move after that point. I enjoy making humorous analogies of my cancer and this is another to ease my stress. Instead of mounds of food and a New Yorker as the host it is mounds of cancer and a Missourian dooking it out. MAN (woman) VS. CANCER! I am a third of the way through it and it has gone by so easy, but I still have so much further to go and I haven't even hit my wall. This scares me a bit.
"Time out!"As a kid I used to use those exact words so I could dodge the impending doom of being tagged in a game of hide and seek or chase. Using those two words would allow my anxiety and stress to just release for a moment while I recollected my thoughts and strategies to continue the game. As I am winding down in my chemotherapy countdown I am anxiously awaiting my "time out." The moment when I can say I am done with phase one and can regroup before phase two of this three phase year. The past four months have flown by so incredibly fast that I haven't really even begun to think about phase two of this whole alien-disease annihilation. The chemotherapy has been tough on me physically and emotionally but I was prepared. I knew it would be hard and going in with that mentality actually made it much easier to handle. It is like when you plan ahead so far and you feel so comfortable and excited to be "ahead" but then slowly real-time creeps up on you and you no longer have that buffer of planning or time. Now you are in present time and you need to use the "time out" before you self-destruct. My "time-out" is coming up and I need to get my ducks in order so I can figure out my next move: phase 2 surgery. As most of you know I have 2 more chemotherapy appointments left. After my last one on December 12 (Thursday) I have an appointment that same day with my surgeon. During this appointment I am hoping to get some insight on what day I will have surgery (early January) and what my options for surgery will be. I have thought long and hard about some of the options I know I am afforded in this decision making process and others I am just as confused as I was the day I first spoke with my surgeon months ago. My head is spinning with various questions and paths I am curious about when it comes to this surgery. I have spoke to numerous cancer survivors in my months leading up to this and it seems like every person has a different outcome, a different pathway to being cancer-free and I am not sure which one will fit me best. I know for a fact that I want to have a double mastectomy. For some women this decision is a hard one, but for me the shear thought of getting cancer in my other breast at a later date is something I cannot handle. I do not care if the odds are low; if they are taking one they might as well take the other. Less worry and stress later on in life! Now I know emotionally that may come back in bite me in the butt because maybe I will feel less feminine or more insecure, but I will constantly remind myself NOTHING is more feminine or secure than karate chopping cancer and being a survivor. The double mastectomy is an easy decision. It is the reconstruction decisions after where I struggle. Which path do I take? How long will the recovery be? How will I look? How will I feel? I said earlier I was prepared for the chemotherapy. I have learned a lot about the effects of chemotherapy from going through it but then it all ends. Everything goes back to normal. With my surgery the decisions I make and the process of going through it is permanent. I have to live with it. Am I ready for those decisions? Have I really thought through them as much as I can? The chemotherapy was tough and it is the word most people shutter at when they hear cancer but I am not sure I feel the same way. This surgery scares me more. After my December 12th appointment I have about a month of "time out" to regroup and restrategize for my surgery. During that time I get to spend it with the people I love in Kansas City. I am sure it will all come together.
An update on my current physical and emotional status: I have completed 14 chemotherapy treatments (4 A/C and 10 Taxol). I feel pretty weak but extremely positive. I am still experiencing joint and back pains, extreme nose bleeds (2-3 times a day), neuropathy in the fingers, my fingernails are dead and trying to fall off (gross), bloating from the Taxol, dry eyes from the Taxol, hot flashes from the Lupron and the constant lingering metal taste in my mouth regardless of what I eat or drink (worst taste ever). The last 10 treatments were easier than the first 4 but the side effects do not go away between each one. It has become an everyday, every minute occurrence. I just deal with it. Last Friday I had a check-up with my doctor. She scheduled pre-operation scans for December 6th so I know how much my cancer has shrunk going into my surgery. While she was examining me I explained to her a sharp pain and discoloration I have experienced in the location of my mass. She inspected it and thinks it may be an infection from an old biopsy. She has put me on an intense dose of antibiotics for one week to see if it helps. If the pain and discoloration at the site are still present on Friday when I go back in I am supposed to let her know. Hopefully it is nothing serious.
Week 17 is coming to a close and today is Chemo #9 of 16. Before I go into my play by play recap of the last few weeks I think it is only fitting to make you watch/listen to the song that summarizes this post. Take a moment and enjoy!
Since my last post at the beginning of this month my spirits have been high and so has my health. There was a scare the first few weeks of my Taxol that my Hematocrit levels were getting too low and I would have to really think about getting a blood transfusion but as of last Friday (cross my fingers nothing has changed in the last week) my numbers were going up into the "healthy" range. With Taxol my eating habits have gone back to normal which I am not sure if that is a good thing or a bad thing because I LOVE food so much. I have put on most of my weight that I lost with the A/C chemo but it is hard to know if that is just the water weight from the Taxol or me actually eating my way through the refrigerator. Either way it makes me feel good and happy. Another positive note that all my lady friends will be jealous of is I have not had to shave my legs in 3 weeks. The Taxol continues what the A/C chemo started and the rest of my body hair is falling out. There are pros and cons to this but I won't go into detail. I am still having serious hot flashes that are keeping my up on a regular basis and sadly punishing my students in my classroom because I have to keep my windows open all the time. It is like clock work. I will have a hot flash for ten minutes then be fine for about 20 minutes and then have another hot flash. My infusion nurse a few weeks ago told me the hot flashes are caused from the Lupron shot I am getting that is supposed to protect my eggs/ovaries but the side effect was only supposed to last 2 weeks not 4 weeks as it has. And I am screwed because I have to have another Lupron shot this week (every 4 weeks) so it will start full force all over again. It is a joke in the Science Department at my school. We call it cancerpause instead of menopause. Whenever I hear the word cancerpause it really just makes me chuckle because I picture cats with hospital face masks pawing at me. Weird visual I know but it gets me through this annoying side effect. My oncologist prescribed me some menopause medication this morning so I am hoping that is does the trick and disarms the cancerpause.The last side effect that is now in full force is the peripheral neuropathy. Everything I said before about it being bad was nothing compared to what I am experiencing now. I have lost complete feeling of my fingertips. Typing right now is actually proving to be quite difficult. It started a little over a week ago and just spread like wild fire to all my fingers. The sensation I feel all day every day is like when you smash your finger nail in a door and it is a numb/painful sensation. It is not fun at all. I am having trouble opening doors, food items, peeling oranges (I am on a orange kick right now), typing, and just really functioning normal in general. In fact two funny/mortifying examples of my neuropathy getting the best of me are as follows: Last week I was stamping my students' papers for completion with this awesome stamp I have (quotes things like "that warrants a fist pump") and I thought I had a good grip on the stamp but really was hardly holding it. As I pressed down on one student's paper the stamp flew out of my hand and rolled down his shirt. Luckily he was wearing a darker colored shirt, otherwise he would have had "that warrants a fist pump" all the way down his chest. I felt so bad! So bad! He was super sweet though and let me know it was no big deal as I was trying to explain to him why it had happened. The second time the neuropathy got the best of me is when I was walking my dogs and I thought I had a good grip on Newton's leash (my large weimaraner) when I didn't. Luckily I noticed shortly before he did that I wasn't actually holding his leash at all and I grabbed it avoiding a serious possibly dog fatal catastrophe. My doctor told me this side effect would happen and I have been taking my Glutamine powder with chocolate milk three times a day so it won't be permanent. Glutamine powder in chocolate milk makes me think of Ovaltine "Don't shoot your eye out" which is how I feel...scratch that...don't feel on a daily basis. Again I got to make jokes to make it worth it. Besides those two side effects, the continuous heartburn and the daily fatigue I feel amazing (that part isn't a joke).
Now to get to the point of the awesome music video at the beginning. The past few weeks have been extremely overwhelming. I mentioned this in my last blog but my mind is flooded with so many different emotions it is hard to decide which one I am actually projecting anymore. Sometimes I cry but I don't really know if I am crying because I was dealt a crappy hand or if I am happy because I know I am loved. Lately, however, the happy emotions seem to extremely outweigh the self pity emotions. About a month ago Eastlake High School (the school I teach at) started a fundraiser to help me with my medical bills and also promote awareness for breast cancer. At first the fundraiser started out small and was just the girls swim team selling t-shirts to their families and having a weekend car wash, but my swim team family is absolutely amazing and they just were not satisfied with stopping there. Some of my girls went door to door asking their neighbors to donate and the whole swim team started selling pink shirts to faculty and the rest of the student body. Pretty soon pink exploded all over the halls of my school and kids, parents and faculty were bringing me lunches and gifts to show me they loved me. The fundraiser became such a success that the Leadership class decided to have a pink out Friday with a pep assembly to promote breast cancer awareness and celebrate how amazing all the students and faculty are at supporting one of their own. Unfortunately the pep assembly was on a Friday and I was stuck in a hospital bed getting a transfusion but they sent me a video to show me how much they love me. Some of you may have seen it but it is worth watching again. Every day since I received this video whenever I am feeling down or alone I watch this video and it instantly fills me with warmth and happiness. It is a very powerful thing and I could not be happier being part of this community!
Another overwhelmingly happy moment that occurred the past few weeks was back home in Kansas City. A few friends of mine decided to hold a benefit concert, to again, help me pay for my medical expenses. They had live music, a silent auction, a pizza buffet, specialty drinks, and a raffle to come up with funds to support me. They hosted the benefit at a local bar run by a wonderful couple I went to high school with. I got the privilege to Face Time with my mom during the benefit and the outpouring amount of love and support was truly incredible. There were so many people there, some I haven't even seen in over a decade. As my sister was parading her phone around so I could say hello to everyone tears were streaming down my face. They were happy tears and sad tears because I wanted more than anything to be there. Again it is the big things like this that get me through each week and excited as I check off each and every chemo appointment. THANK YOU ALL SO MUCH! It is nice to have a little help from my friends...
This week I went back and read some of my old posts just as a reassurance to myself that I have come a long way. In the beginning posts I was still "healthy" or should I say not chemo infused and I was active and having some fun. I feel like since school/chemo started all the fun has been sucked out of me. I have not had the opportunity or the strength to go out and do the things I want to do. I live in an incredible city and the thought of walking two blocks to a restaurant frightens me. I am getting cabin fever sitting in my 500 square foot studio apartment each and everyday but I know once this is over I will probably be more active then I have ever been. A couple weeks ago my sister came in town and I wanted more than anything to show her the city (my mission is to convince anyone and everyone to move to Seattle). On Thursday and Friday of that week we stuck around the house and played Phase 10 (my favorite game) and watched movies. On Saturday, I decided I had this burst of energy and I wanted to get out of the house and show her the area. I knew I couldn't walk far so I decided to drive her and Daniel out to Woodinville to the Red Hook Brewery for some lunch, a brewery tour and some drinks (for them not me). We had an awesome time and a couple friends from my work actually came out and joined us which ended up turning into an all day event. It was a blast and I felt great the whole time! On Sunday, we headed to Fremont (Carly's next place of residence) to go to the Farmer's Market. Before I was diagnosed I worked at a restaurant/bar in Fremont and on Sunday's would always be so jealous of everyone who got to go to the market because I could see it but always had to work during it. We started the day going to lunch at my old place of business, which was nice because I got to say hello to everyone, followed by treasure searching at the Farmer's Market. Once we finished at the Farmer's Market we headed to Gas Works Park for some LARP (live action role playing) watching and incredible views. It was really fun and I think I convinced Carly just a little bit more to move to Seattle. At the end of the day, though, I was beyond exhausted and I think all the exertion I put into the week caught up with me. I ended up being couch confined the rest of the evening as Daniel and Carly explored a little more. So again, it goes back to the idea of how just being a little active scares the crap out of me.
Last update for this blog: today my oncologist told me I get to go home for Christmas. Daniel and I are hoping to come home December 20-26th (flights permitted). I am so excited to see all of you who have been following my journey and reached out to me when I was at my lowest. In the next few weeks my surgeon will be calling me to start looking into scheduling a time frame for my surgery. They project it will be within the first few weeks after the holidays. Time for me to start doing some research on my options.
P.S. Not sure if I said this already but I am totally going as Walter White for Halloween. It is only fitting! Daniel and I are hoping to go costume shopping this weekend.
Yet again it has been a while since my last post. Between school starting, coaching swimming and battling cancer I feel like I have three full time jobs. Needless to say when I do have a moment to breathe I am trying to play catch up on what I missed the day before. That or I am sleeping. But for those who have been worried I am alive and working on the getting well for the most part. The past month has been a whirlwind of side effects and sicknesses. This is the first week I feel like myself again (or as much as I can with chemo pumping through me). My last blog I left off talking about how my biggest challenge coming up would be surviving the first day of school. Well I am here to tell you that was a success. However, a very short lived success. The beginning of the school year is always one giant cloud of germs and dust as most teachers will attest. Students are coming in from the outside world bringing in a variety of different germs combined with the dust that settled in my classroom over the summer and Seattle summer turning to rain. I knew I would eventually be doomed in the wellness department it was just a matter of when. Well after surviving the first week of school (yet getting sicker by the day) I ended up having to go to the hospital on that Saturday. I woke up Saturday, September 6th feeling terrible. I had terrible sinus pressure and a cough that took my breath away. I took my temperature throughout the day and slowly watched it creep up to 101.4 Farenheit. Now I know that seems very high to wait that long to go to a doctor but according to my chemotherapy information there is not much they can do until my fever spikes above 101 Farenheit. Once it reaches this temperature it is considered an infection and can be life threatening. Silly huh? Why wait till that point? Any way once my fever spiked I called SCCA and let them know my symptoms and temperature. They immediately referred me to University of Washington Hospital Emergency Room. This put a huge damper on my plans. I had hoped to go to a concert that night that Daniel and I were looking forward to. Damn chemo! Once I got to the hospital they admitted me, took x-ray scans of my chest and started me on a slew of antibiotics. One thing I hate about hospitals is they don't ever consider how hungry you are when you are there. That feeling (because I did not have time to eat dinner or eat at all that day) mixed with all the antibiotics made me feel worse than when I walked into the ER. After I got my scans back they determined I had pneumonia. To be safe they admitted me for the night in the cancer ward to pump me full of more antibiotics; none however, made me feel any better. After I was admitted I was assigned a resident doctor to oversee me through the night. She checked all my blood counts and sheepishly decided that I needed a blood transfusion in the morning. This all seemed ridiculous to me. How can a sinus infection result in all this? I was hesitant but I assumed this nervous resident knew more than I did and if she thought this was the best solution than so be it. After a sleepless night in the hospital and some vomiting from the antibiotics an attending doctor came in and decided I did not need the transfusion after all. My blood counts were low but I had no other major symptoms that made them assume I needed a tranfusion. In fact, he decided I could be discharged that morning, given oral antibiotics to take home and be on my way. This overnight vacation seemed like a hefty bill for really no solution to my pain. I still left feeling just as bad as I went in. The only positive was I did not have a fever any more.
After my awesome visit to the hospital I had a week till my next chemotherapy appointment. Let me restate that...My LAST Red Devil Chemo appointment. I still felt terrible but I wanted to get it over with. I some how made it through the week and my blood levels were high enough so that Friday it was a successful transfusion. My doctor also prescribed me a more potent antibiotic hoping it would clear my infection/pneumonia faster since the antibiotics the hospital gave me weren't cutting it. These antibiotics were that week's downfall!
That week after my last dense dose chemo was the worst week of all this adventure. Not only was the side effects of the chemo in full force but so was the side effects of the antibiotics mixed with my cough. So that week I suffered severe diarrhea, dehydration, and manic coughing on top of all the fatigue and nausea. I was so weak I thought for sure by Wednesday I would pass out driving home from work. I couldn't make it through the day without breaking out in tears in front of my coworkers and students. It was terrible but after attempting to make it through the day on Wednesday at school I left early and went straight to SCCA. There I spoke with my nurse, got another chest x-ray and they prescribed me a new cough medicine. That night I went home and slept for 3 days straight. I had hoped through all of this I wouldn't miss school for random sick days because if I did I would feel bad for my students but my body told me I needed to rest NOW so I did and boy did it help!
Flash forward a week later to this past Friday, I know this is a huge time lapse, but I started my low dose Taxol chemotherapy. This chemotherapy will be every Friday for the next twelve weeks. Yay (vomit)! I no longer have to get a Nuelasta shot on Saturdays to boost my white blood cell count (yay no more aches and pains in my bones) but this does mean I have to be extra cautious of my health. I am praying I stay healthy throughout this fall so I do not have to miss a chemo appointment. Right now I am scheduled to end chemo on December 13th. If I miss one appointment at all it will bump into Christmas break and I may not get to go home. Cross my fingers this doesn't happen. When I went in on Friday for my chemo appointment it went the same as all the others. I first had a blood draw (my counts were high enough to proceed), followed by a visit with my oncologist and then my transfusion. My doctor told me my mass is getting smaller. I can still feel it deep in my tissue but I really have to dig for it. After she did my physical exam she discussed all the side effects Taxol has. The effects are less severe than the A/C (Red Devil) but over time (12 consecutive weeks) can get worse. They are as follows: fatigue (but not as bad- I was up and moving on Monday which is unusual), extreme heartburn (still one of the worst side effects), constipation (terrible- don't EVER take pooping for granted) :) hot flashes (these are really bad right now and I haven't slept in days), and last but not least peripheral neuropathy. Peripheral neuropathy is bad. My oncologist said that with Taxol I could lose feeling in my hands and feet and if I do not monitor it, and it will become permanent. She told me in order to help prevent complete loss of feeling in my hands and feet it I needed to buy Glutamine powder and take it three times a day in yogurt or hot tea. Yesterday I went to a supplement store purchased this powder and started taking it today. It is quite disgusting but beats losing feeling in my extremities. I got my armor on and I am still fighting strong.
So this sums up the past month. Now to discuss how I feel emotionally. This month has been the hardest yet. With being sick, missing family, getting more and more medical bills I am overwhelmed with emotions. Yet I keep pushing. I keep telling myself it could be worse. I keep telling myself so many people are looking up to me to put on a brave face and push through, and I have. I know I have the right to cry, and believe me I have, but something inside of me tells me it is not worth it. I am alive. I have the most AMAZING friends and family in my life that have kept me going. I feel stronger every day because of them. It kills me inside that I will never be able to repay these people who have had such an impact on me the last few months. It is another thing I will never again take for granted. You have reignited my flame (thanks Sarah for the reference). This feeling alone is overwhelming, but a happy overwhelming. I spoke with my mother today about how I wish I could pay back everyone who has been so incredibly amazing to me in this time and she told me nobody expects pay back but I can always pay it forward. I want more than anything to pay it forward and one day I will. This experience has changed me more than I really think I can comprehend. It brings me to tears thinking about how all the positives have truly outweighed the negatives. I am hundreds of miles away from my family but the love I feel from everyone makes me feel like I am right at home and not at one moment alone in this fight. Friends I lost touch with, family I haven't seen in forever, or even met before are reaching out to keep me positive. Many people have said I have changed them for the better but they have no idea how much they have changed me. Thank you all so much!
I have eleven weeks left of chemotherapy and I am assuming (let's hope I am right) that it can only get easier from there. I mean a new set of boobs (ha ha) and a potential tummy tuck to make them beats heartburn, nausea, fatigue, constipation and just overall feeling crappy right? Phase one of this year long job is almost over with. I can see the light at the end of the tunnel and I feel like I cannot run fast enough to get there, but I promise myself and my family I will be sprinting and karate chopping the whole way. I value my life and I am strong. Cancer picked the wrong person. Anyone who knows me knows I am a work-a-holic so three intense jobs, like I have right now, is a breeze.
P.S. Fun Fact: My nurse told me the other day my nose will probably run on a regular basis because since I have lost most of my body hair that includes nose hair too. Weird huh? Because I have no hair in my nose I can't stop the snot from running. Haha I found it fascinating. Also below is a picture of my new bald head. All I have now is baby hair that doesn't fall out because of its follicles.
Sorry for the long hiatus but between barely being able to lift my finger for a week after chemo to starting school meetings this week and Comcast being the evil dictator I haven't been able to find the time to get a working computer to write my entry. So now I sit here after school about to head to a benefits meeting (to hopefully change my insurance) writing all the emotions I have had bottled up in my head for the past few weeks. I am not going to go into lengthy detail about each and every day from the past two week but I do want to explain emotionally and physically how I have felt these weeks. I started this blog mainly to inform my friends and family about my progress and educate them on the "behind the scenes" of cancer and all the lovely baggage it comes with but as I have delved into this blog more and more I am starting to think of it more as therapeutic and also a nice reflection for me to look back on in a year and hopefully laugh about it all. I mean really...I have the WORST luck!
As most of you know my second round of chemotherapy fell on my 28th birthday this year. As I get older birthdays seems to be less relevant and more depressing. Who wants to celebrate getting old and wrinkly? Not me. So I didn't mind so much when this round fell on this special day. On that day Daniel and a great new friend of mine Alicia came with me to my appointments. First, as usual, was the blood draw. My white blood cell count was excellent which means my chemo was a go for the day. Second I went to my oncologist appointment. When I arrived I was notified that my oncologist fell the day before and broke her arm so she would not be my doctor that day but a lovely British lady would. I was a bit nervous because I love my doctor and feel comfortable with her and trust her. I did not know this other doctor and felt weird letting her examine me. (Disclaimer: For this year I am treating my body as a science experiment- I feel like every doctor in the Seattle area has explored and researched it- Numb is what I have come to feel). When I got into the patient room I was immediately welcomed with a giant hug and a tearful "Happy Birthday" from this doctor I had never met. She was amazing and so so sweet. It just reaffirmed that I am getting the best and most involved care I could possibly get. After the hug and questions she examined my mass. Before I started this whole process my tumor was 9 cm in length. This may not seem like a large size but I could physically feel it through my skin and from the outside it felt like the size of a golf ball. After my first round of chemotherapy my tumor had shrunk 2cm. This is huge! I no longer have discomfort nor can I feel the tumor through my skin without really looking for it. It has given me a positive comfort knowing the chemo is actually doing something good and not just rotting my insides. After my check-up with my oncologist I went upstairs for my infusion. During my infusion I conned Daniel and Alicia into playing a full game of Phase 10, which thanks to Marley Sugar is my new favorite card game. Playing cards and eating an obscene amount of animal crackers distracted me from the 4 hour infusion. Towards the end of the chemo infusion I started to get a terrible headache but it was quickly squashed by some Tylenol from the gift shop downstairs. After chemo was over I felt well enough to indulge in some burgers at Lunchbox Laboratory as a birthday dinner! It all was perfect timing.
As soon as lunch was over and we headed home the prechemo drugs started wearing off fast. I immediately became helpless due to the amount of pain I felt all over. Common side effects I felt this time around include extremely fast hair loss, crippling heartburn, a couple days of dry heaving (still have yet to vomit), extreme exhaustion (I slept for four days straight), trouble breathing, body cramps, constipation followed by diarrhea (sorry I know its gross), and the worst was the neuropathy. Neuropathy is nerve damage which causes tingling and cold sensations usually in the extremities. I had the awful privilege of getting it in my head. This cold tingling sensation has caused dreadful headaches and mind-numbing earaches. It is so bad I have to wear a beanie hat around the house all day, I can no longer sleep with a fan on and I have to sleep with a pillow over my head with pressure on it to make to pain less in order to sleep. I am hoping this Friday when I go in for Round 3 I can do something more to prevent or help it. All of these side effects are really taking a toll on my physical health. As I sit here I currently have some kind of cold I have contracted after only being back to school (with no kids yet) for three days. Ugh it is going to be a long year! One last thing on the side effects: As soon as I did my second round of chemo, as I said earlier, my hair started to fall out in massive chunks. I couldn't even lay down on my pillow without sitting up and it looked like something sheaded all its hair. So invited my friend Patricia over to shave my head. I was incredibly nervous but her and Daniel were very comforting and actually it did not look as bad as I thought it would. Below is a picture of me with my head shaved and me in my new wig. My wig is fun because no one recognizes me but it is a bit itchy at times. Even though I do not look half bad with a shaved head it is still falling out and will continue to till I am completely bald, but now when it falls out I can blame the hair on my dog Newton instead of knowing that it is mine. I figure it is less traumatic that way.
Last thing I want to discuss that has played the heaviest on me the past two weeks is my emotional well-being. When I found out I had cancer I cried for a few hours and then told myself to suck it up and deal with it and since then I haven't cried. I figure I have better odds than a lot of people. When I walk into SCCA and see old people and children who have a heck of a lot more to complain about it gives me strength I never thought I had in me. It is the saddest thing to see and for that I know I have to be brave. And I have. Until this past week. This last round of chemo has really taken an emotional toll on me. I think it is just the thought of knowing I don't have control over my body anymore. Even with all the preventive care in my handy side effects book I can't control them all. It leaves me feeling weak and powerless. Anyone who knows me knows I like to take charge. I like to be in control of my own destiny and my own pain really. Also I am a huge wimp when it comes to being sick. I keep thinking "I've only done 2 rounds and I have 14 more rounds or 3 months of feeling like this!" Excuse my language but that scares the shit out of me. I don't want to have to rely on other people. I don't want to battle heartburn or exhaustion or neuropathy. I want control. I hate the chemo more than I hate the cancer. At least when I had cancer I could not feel it. I know that is stupid to say and I really do not mean it but man this isn't emotionally what I thought would happen. I can handle the pain I assume because it is more of an annoyance then anything else but the loss of control is challenging. This is my rant for this week. I will suck it up and I will get through this. It is just a really bad job with a emotionally abusive boss. But I will get through it.
This week I started my meetings at school. I had to stand up in front of my whole school (mind you half of it still doesn't know who I am) and tell them about my alien disease. That took guts, that took courage I did not think I had in me. It is the little steps, the little accomplishments that are getting me through this. I know it won't be easy but I still feel like I can, not just will, handle this with confidence and courage. Friday I have my 3rd round of chemo. Three down...13 more to go! I will end it all just in time to make it home for an amazing Christmas with the family. Next week will be my biggest challenge...telling my students, their parents and getting through the first week of school on the chemo week where I feel the absolute worst. If I can conquer that I KNOW I can conquer anything! Wish me luck!
