Round 3 retrospective

June 26 and 27th were my last chemo treatments. We found out that I am not allergic to any of the medications they are currently giving me but for some reason I am allergic to the extra anti-nausea drug they were giving me. So we tried a acupressure device to help with nausea. I can honestly say that this round was the most difficult though. By Thursday, I was exhausted (two naps a day exhausted), my nausea levels were manageable but present, and I just generally felt beat up. I was told this would happen but I really was hoping it wouldn't happen to me. This time around this feeling of tiredness and generally not feeling great has stayed with me a little longer than the first two round. I am tired. I look tired. I realized that I need to, as my friend Bethany phrased it, "Say uncle" every once in a while and just say I've had enough for today. This just pisses me off. I want to do what I would normally do in my life and am being forced to acknowledge that I am not who I normally am. As one of my chemo books has told me over and over again, I have to remember that "this too will pass." The heat is also taking its toll. My last herceptin treatment was accompanied by a bag of saline to help me to hydrate as I just don't feel like I can keep up sometimes. You can tell I didn't feel well because for three out of the 5 days from the 26th on, I only biked twice and didn't even try to run. I was just too beat up. Needless to say, I'm not exactly looking forward to the next round but know I will be that much closer to being done once it is over. I was able to go to the Tupper Lake Tinman and see my husband and friends compete. It was a training day for me on how to deal with the heat, early morning, and spectating for Ironman day. We instituted several new rules for the day which seemed to help out. I was able to go to the Boilermaker this past weekend where I was able to volunteer. This weekend was a blast. I loved spending time with friends and my husband. Volunteering was a great time. But my lasting impression of the weekend (and this is something I have been noticing week after week) was that I am so impressed and excited about how wonderful many of my friends and family members have been with me. They make me feel like ME while they are around me. They do not react to my bald head, lack of boobs, and scars at all. They make me feel so comfortable that sometimes I look in the mirror and am shocked by what I see - a bald, pale person with bags under my eyes who resembles a slightly larger version of myself, not the vision of myself that I see in my mind. I laugh at myself every time I am startled by my own image. I've even noticed that I am almost forgetting that I am a person who is going through cancer treatments for a couple of hours each day. This is a great thing. I thank all of you for helping me feel that way! The only people who are struggling with my hair loss are the youngest people I come in contact with. My nephew Cooper (5) knows I got my hair cut but that is all he understands. My niece Sierra (6) has vocalized that she doesn't like me without hair. She doesn't understand cancer, she understands that her family is worried about Kelly, she has been told Kelly is sick, and Kelly has a big sign that something is wrong - she lost all her hair. She told me that "I don't like you without hair. I think you should glue your wig to your head." I have let her know over and over that Kelly will be ok and she wants to believe me but she is unsure of what is going on. She was there for me to go for my first swim (without putting my head underwater) where her sister, Kaelah (8) cheered because she knew this was a big step forward so she got excited for me in that moment. We also let her see the most recent head shaving although she likes my "itty bitty hairs" that form randomly on my head. I also tried to explain what happened to my hair to a little boy (about 3) today so he wasn't afraid of me. He pointed to his own hair and said "It fell out?" Kids are so tough when it comes to this. I don't know how people with children handle this part of cancer. Here are some pictures I wanted to share from the past few weeks! One is from Boilermaker and the other is from Lila's graduation. Great times in my really fantastic life!

5 year anniversary - this is for my husband and your significant others

June 30, 2007 - I married the man I loved! June 30, 2012 - Joe and I will have been married for 5 years! Although we have been together for 17 yrs, we have managed to fall more in love over those 5 years. I can say that I love my husband for all that he has become, all that he has and will do, and everything that he does for me. Doing 5 marathons, 2 Ironmen, and many other races during the past 7 years has made us even closer since we have embraced our shared passions to the fullest extent. This year means even more to me. I was given the first news that I may have had cancer at a routine doctors appointment on February 1, 2012, which was my husbands 33rd birthday. Someone recently said and I agree with them, that this was the best birthday present I could have given my husband - early detection. Because my doctors and I were aware of my risk factors, I was screened early for what was originally thought to be nothing. The phone call I got on February 13 that told me I had cancer changed our lives forever. Joe was not the first to know because I was at work (one of my first questions was "how do you tell your husband you have cancer?") but when I called him, he immediately became my rock, my support, my cheerleader. I will be here with Joe by my side for many years to come because of those dates. This anniversary allows us to not only enjoy the moment but also know that cancer will not take me from him anytime soon or hopefully ever. I am grateful for all of the people around me who are giving me the gift of life through early detection, surgery, treatment, and support. I love this life we have built and am not ready to leave it because we have a lot to accomplish. As Michael Buble said in our wedding song, "...I found strength in you, Cause in my mind you will stay here always in love, you and I... In my mind, we can conquer the world, In love you and I..." We were supposed to be celebrating our anniversary by doing the Tupper Lake Tinman this weekend together. Joe is still doing it and I get to be his lovely cheerleader. This may not be the perfect way we planned it but I will be there and when I do make a comeback, Joe will be my biggest supporter! He will cherish the moment I cross the finish line at my first race with a smile on his face, a big hug and kiss, and probably a tear in his eye because he knows how much this means to me. This means to us. It means I'm back. It means WE are back! This is how marriage is supposed to be. I said these words and I meant every one of them: "For better or worse. For sickness and in healthy." My message to all of you is to do self exams, go to your yearly appointments and have breast exams, call your doctor if you feel something different, get a mammogram when it is indicated for your age, family history, or condition, get a breast ultrasound if you have fibrous breasts, and be proactive about your health. Your loved ones will thank you for this! I wish this disease on no one! It is hard to fight through it but the earlier you find cancer, you give yourself the best chance to treat it and give you the best chance for survival. Do this for yourself. Do it for the ones you love! Happy Anniversary Joe! I love you more and more each and every day! On Saturday we celebrate all we have accomplished and will accomplish together. We have a fabulous future ahead of us with some mountains that are gorgeous to view from the bottom, hard to climb, but rewarding to relax on and enjoy the view. I love you!

1/2 way done with chemo and 13% done with herceptin

I decided to write on my type of cancer to clarify some things. I was diagnosed with stage 1 grade 3 ductal carcinoma. The method of treatment is surgery including lymphnode dissection. This alone does not mean I would have needed chemotherapy and herceptin. My cancer was Estrogen (ER) receptor and progesterone (PR) receptor positive (I scored a 100% here which is great!). This means that my cancer cells bind to estrogren and progesterone and will divide more quickly based on the presence of these hormones in my body. My cancer was also HER2+ (this is also a receptor on my cells) having an overabundance of these receptors allows it to be a very aggressively dividing cancer. On a positive side, there are two targeted treatments for these receptors. One is Herceptin - Herceptin targets HER2+ receptor and destroys these cancer cells. Herceptin is given in weekly doses over the course of 1 year through my blood stream. One is Tamoxifen - Tamoxifen targets ER and PR positive cells and slows or does not allow them to divide. I do not start Tamoxifen until after I am done with chemotherapy. Speaking of chemotherapy, I became eligible/in need of chemotherapy when my cancer came back as grade 3 (more aggressive) and HER2 positive. The combination of the chemotherapy drugs (Taxotere and Carboplatin) and Herceptin and the follow up treatment of Tamoxifen give me the best chance of making a full recovery from cancer and increase my probability for remission for many years to come. The chemo drugs Taxotere and Carboplatin are given to me every 21 days for 6 rounds. These are the drugs that give me the worst side effects or the commonly known chemotherapy side effects. On a positive side, because I had no lymphatic involvement, I do not need radiation treatment when I am done with chemo! After tomorrow, I am 1/2 way done with my chemotherapy treatments! If you read the last post and are an Ironman, a friend or family member of an Ironman, or a person who loves Ironman (doesn't everyone) in my analogy I would be done with the 2.4 mile swim and 56 miles of the bike! If we are talking about the Lake Placid Ironman, this means I only have to get out of Lake Placid on the hills, take a beautifully fast ride down the Keene hills, take a leisurely ride into Ausable Forks, and then climb back into Placid over the shoulder of Whiteface and through the notch. I will know I am close to the finish when I head up the bears toward the transition area! Surprisingly this is very similar to my cancer treatment effects. I've done it countless times before so I can do it again now in a different arena. We administered the drugs differently this time around though to pinpoint my allergic reaction that I have been having. We decided not to give another anti-nausea medication because we are pretty sure it is that which is giving me hives. We decided to give me my other anti-nausea med (Emend), Herceptin, and Taxotere today only as we know Herceptin doesn't bother me so if I get hives tonight it is either Emend or Taxotere. Tomorrow we give me carboplatin and then we head back to camp and hope I do not have hives again. We have also upped my steroid and benadryl to prevent any allergic reaction. Fingers crossed this will work. This means I get two needle sticks in one week which I am not excited about but what are you going to do. Without the extra anti-nausea med we are trying a non-drug method of anti-nausea prevention using a little device I wear around my wrist which gives off little electrical pulses and pushes on a pressure point which is supposed to follow the acupressure principles. Since acupuncture seems to be working it was worth a try for this. I have also completed 13.5% (7 out of 52)of my Herceptin treatments! Those are hour long appointments and a breeze so no worries with them right now! In other news: 1. I received my genetic test back and am BRCA2 positive - this is the same gene my mother has but I know it is not solely the reason I got cancer when I did. We can discuss this at a later time after I have another meeting with the genetics counselor in September. 2. I was told on Friday by my surgeon that my incision looks completely healed! Yippie! He also said that I could "Return to all normal physical activities." Which prompted Shauna to ask "Normal activities for who..you? Or Regular people?" That wasn't clarified in the appointment so I say ME! My next appointment was with my oncologist who said "Just find your limits and don't do too much. You will know and I will know when you have over done it." 3. Thusly I went out in Lake Placid and rode up Mirror Lake Drive, down the bears on 86 to River Road, out and back on River Road and back up the 5 hills to town! It was 15.42 miles in 1 hr 15 min! I figure I will use this experience when I'm on mile 106 of my bike during Ironman 2014 and say to myself, "In life there are hills.." wait that is Melinda's song. I meant, "I did this when I was going through chemo, I can do this easily now! Suck it up and go." Of course there would be expletives in there but I don't know who is reading this! I also did this course so I could feel like an Ironman again, on the Ironman course, with other Ironmen who were passing me extremely easily. But that is ok, I was on the Ironman course again! 4. Running is really difficult but I am doing it! My disappointment lies with the fact that I am putting in the runs but I am not getting faster and they are not getting easier but then I think, "I am going through chemo and RUNNING! That's amazing!" I can't wait till I can go back to running faster than 12 min miles and more than 30 minutes without feeling like I must stop. 5. Do to unforeseen circumstances, I am making the trek home weekly for treatment as my planned destination in the Adirondacks did not work out. This is a long story and not meant for a blog so we can discuss later if you want to. This makes me feel like I am ruining our summer but I keep reminding myself it's only one year and we will be back to "normal" next June! 6. I am going back to work in September in a part time position. There were many factors involved in this decision but ultimately it will be the best move for me. It will be very different but in the long run I know this will give me some structure I need and allow my brain to work in a different way which will be important to my recovery. 7. My diet is crazy right now! I am craving fatty, salty, cheesy foods which are not the things I ever craved before. I have gained about 6 lbs. This is all due to the steroids they are giving me to keep my body from having a reaction to the chemo meds. They make me ravenous and crave crazy things. I have to force myself to eat well on days and other days I just let myself indulge in these cravings. Between the hunger, the much less activity than I am used to, and the quality of food I am eating it is not surprising I am gaining weight but it is making me angry. I keep being told to give myself a break and I will lose it quickly after but I hate working to lose weight. My nutritionist was excited I gained weight though because it means I am giving myself a cushion to roll back on later in chemo treatments just in case. And when I say a cushion, I mean a spare tire around my midsection! On a positive side, I am getting some muscles back slowly! Joe told me last week when I was craving a cheeseburger to just eat it since I already have digestive issues I wouldn't notice a difference. So I ate a couple in the past two weeks. I haven't eaten red meat since last August! We think I am craving the Iron and B vitamins since my Red Blood Cell count is down. I would love to want to eat spinach or other veggies instead but spinach tastes bad to me right now so I won't eat much of it if it is an option. I think I may go back to my vegetarian ways after I am done with chemo just to detoxify my system! But for now, I am giving in to what my body craves to a point. I do call the line at eating at 2:30 am when I am starving! I think that is all for today. Yes, I am up at 1:25 am but it is because my steroids keep me wide awake at night.

1/3 of the way done with Chemo

I refuse to not look at the glass as full. My life is extremely full of great people, experiences, and a bright future. Thus, we will look at chemo as being 1/3 of the way done (sounds better than 2 out of 6 complete). If we were doing an Ironman triathlon, I JUST have a 112 mile bike with some hills, and a 26.2 mile run ahead of me! I have compartmentalized my life like this twice before, now is no different. I'm not going to lie about chemo. It sucks. I haven't felt fabulous since Monday, June 4th but I know that over the next few days life will slowly get better as "This too shall pass!" My stomach and intestines are not thrilled with me. I'm tired. I'm a little puffy from the steroids. I am super sensitive to the heat and sun. My mind wanders a little more now than it did before. I am more than excited to not have hives everywhere again and this time around I did not get migraines! I will say that I was hopeful that I would have consistent reactions each time and I would find a rhythm. I feel completely different this time around than I did the first time around. This scares me as I wanted to be able to plan for the future chemo treatment weeks. I do think acupuncture or Reiki or both have combined to allow for less nausea this time around so I will keep trying those. I did have an interesting day yesterday. My husband, Grace, a couple of friends, and a few former students ran the Lake Placid Half Marathon. This was a race that we originally thought I would be able to run when I was first diagnosed and we didn't think I would need chemo. I watched the race. I have been trying to put my competitive drive on hold for the past few weeks and just enjoy the bike ride or recently, enjoy the run. This hasn't been working for me. I want to push myself. I struggle with how slow I am or how far I can go without fatiguing. I know I should leave my gps at home and just enjoy the time I am "working out" but I have mileage and time limitations so I need some feedback. Yesterday I realized this want and need to be in the race is not going away and I'm embracing it! I figure I have 4 more treatments left which means I have about 15 weeks of not feeling great/not being able to train (wow that seems like a long time). Then from mid-September I should be able to start training again and competing again once I am ready. This means that I am hopeful to be running and being a part of a 5K (maybe 10K) in the fall! Watch out Hangover Half - I may be there too! I miss the wonderful feeling of being in the race so very much. I miss feeling alive while doing it! Watching yesterday made me realize how much I love the camaraderie of running - knowing that you are all suffering and loving it together! I did overdo it a little yesterday and I learned what not to do on Ironman day as a cancer patient spectator. The heat, the sun, the short run, and the early morning definitely was extremely exhausting to me. I will have to be smarter on Ironman day so that I can support all of my favorite people during the race! This weekend also made me realize that I have met a lot of people since my surgery, chemo, and diagnosis. I really wish that they had met me prior to this. I feel very different now than I did prior to cancer. I was an athlete - slow but determined. I was fun - I could have beer back then! I would have been right with you torturing myself on my bike, during the swim, and the run. I know I will be me again soon but I just don't feel like people who are meeting me now are really getting the strong, independent, determined woman that I am. No one, especially not cancer, can take away the fact that I am an Ironman away from me and with that title comes a lot of intense personality traits. Most of these people know my husband as my number 1 fan and supporter but also my caretaker which would never have happened before. I know that I will change based on cancer but I loved who I was before and I am confident that I will be that person again soon. I look forward to training alongside of you and having a post race/workout beverage with you again soon. I am very excited to have you all along with me for my journey as this Ironman will be better than ever again soon.

I'm running again!

I received a phone call early Thursday morning saying that my appointment with my surgeon had to be changed because he had an emergency surgery. The secretary wanted to see me immediately. I was supposed to go to yoga but I knew this appointment was going to be a good one and he was going to finally allow me to run again. So I made the decision to skip yoga and go to hear him say I could run again - with limitations. It was the best decision I made that day. I was cleared to run short distances. Not my idea of short distances (6 miles), the rest of the worlds idea of short distances - 1/4 mile and work up little by little. I was also told I couldn't run 2 days in a row. My first run was that night. I went out and it was bliss! I hit 1/4 mile and just couldn't stop. It hurt and was slow and the breeze on my now bald head was amazing. I stopped at 1/2 mile in 6:09 - holy slow. But it was everything I wanted it to be. I am so happy to be running again! Joe is also happy I'm running again. He knows it is my therapy sessions. I am also now sleeping through the night again since starting to run and bike! This is a wonderful thing. So since my first run on Thursday, I did a 1 mile run in Keene Valley in 11:45 on Saturday, a 1.25 mile run on Monday in 14:22, and participated in National Running day today, the day after chemo, the day after I had another allergic reaction with a different anti-nausea drug and feel pretty horrible, 1.0 miles in 12:34 - I'll take it. It helped clear my head and got rid of my nausea for a short period of time. And if you are going to say to me did you clear that with your doctor, yes, I did. At my appt today she encouraged me to do a short run as it has been shown that people who workout have less nausea. She was also really excited that I am now sleeping through the night because of my running and biking - so please don't tell me I'm overdoing it. I am loving my runs! My hair fell out last week too! Joe and I had a fun time with the shaving! 1st a mohawk and then we just got rid of it. I honestly love being bald, it is liberating - showers are so easy and the wind on your head is lovely. It is also very cold. I will admit that people do double takes all the time and are kind-of rude just watching me but I've gotten used to the looks. I also have become a beacon to others with cancer. I've been approached a few times in public places to ask me about my doctors or oncologists or just say good luck to me during treatment. I guess when you decide to go bald, you accept this as your place in the universe. Here are some pictures of my baldness.