When you have cancer you are put in a position where every thought you have is centered on you getting better. Although you try very hard to do things that will take your mind off of it, it is still always there. Yesterday I had to call CDPHP (our insurance company). This was what seemed to be my millionth call of the week to either race directors, hotels, airlines, doctors, or hotels to tie up loose ends before I have surgery - I am an extremely controlling person and although my dad tells me I could do most of these things while I am home from work, I just want to concentrate on making myself better, getting my mobility back, and making myself ready for chemo while I am home recovering. CDPHP was very nice to me and was telling me all of our financial expectations with this. It was a lot more than I even expected but I am so glad to have health insurance. It is funny that in a time when I feel like I should be getting rid of cancer from my body, I am trying to figure out the financial burden of cancer as well. Today we got our first bill summary from St. Peter's Hospital for the mammogram, ultrasound, and biopsy. The bill total was $8,023.00!!!! Wow!!! Thank goodness I have insurance so I only owed a copay but I can't imagine how much my entire care over the next year will add up to for the insurance company. Joe and I joked that since we have been very healthy over the last few years, we are cashing in on our payments into the system. I am keeping all of these receipts for many reasons but I want to see what the total cost of treatment will be for this situation. How do people without insurance pay for their cancer treatments without going completely broke? I am very grateful that we have insurance right now even though with a no out of pocket maximum, this will become expensive quickly but it is my life we are saving and we will make it all happen.
I also became "that patient" this week. I called both my oncologist and my surgeon's offices to ask questions as I was confused by some information. One of my first questions was whether or not the port would interfere with my biking, running, or swimming and was assured it wouldn't but I should stay in "safe water" swimming environments. I am petrified of getting lymphedema after surgery so I keep asking to make sure we are only taking out a couple of lymph nodes during surgery. Lymphedema would basically end my biking career completely so I want to make sure they understand my concern and will try their hardest to not be overly aggressive in taking them out unless it is absolutely necessary. I also was confused about if my lymph nodes will be tested during surgery or not. I still have to re-ask these questions as if they are cancerous, I do not want to have a second surgery (that is exactly what I was trying to prevent by not having reconstruction so why would this be different) I just want those effected removed. I actually think I am getting an actual answer but it isn't the answer I want to hear so I keep asking the question with the hope that they will change their answer to fit my needs - probably wishful thinking but if you know me, you know this is exactly me!
In all of this crazy of my life, the only thing that makes me feel like I'm still me is running and biking. Swimming isn't desirable as looking at that stupid line at the bottom of the pool just allows me more time to think. I am in the best biking shape at this point in the year as I have ever been. I started going to these indoor training sessions with my friend which are great as I am just an Ironman there until they ask how training is going for this summer's Ironman and I have to say I'm not able to do the race any longer. Today I went for a run where I just went where ever my mind decided to take me and it was fantastic. I am down 5 lbs which is exactly where I wanted to be at this point in training. But then I realize that I am training for surgery and that makes me sad. But I am loving every moment I am on the bike and out running - I know I won't be doing it for a little while so I want to make every one count. Joe and I were negotiating with my surgeon about my return to biking and running and we think I can get on a recumbant bike (one where I don't need my arms) within 2 weeks of surgery and back to running a little about 3 to 4 weeks after surgery. I will be allowed to walk almost immediately after surgery though so maybe I can also do wall sits and lounges to keep my leg strength up.
This week also came with me telling my students about me having cancer. This was intersting as I am talking to high school students (mostly 11th and 12th graders) about me having breast cancer. I was impressed with how many questions many of them had and how quickly some of them became protective of me. It has ultimately made my day a little easier as I am not the teacher I was before I was diagnosed. I am a little cloudy and unfocused sometimes although we are still working appropriately. I needed them to understand that I was going through something very big and be aware that I am trying very hard to be me.
My husband is my rock through all of this. I offered to let him out of our marriage deal and to find a younger, more genetically appropriate model but he is sticking with me!! We laugh daily and he keeps me positive. The first time he was rattled was this week too though with the FISH test being positive. Sometimes I need him to be angry with me and that was one of those times. I couldn't ask for a better partner in this journey although I feel horrible to be putting him through this. He is an absolutely amazing man and I will make him very proud through this process.
I am excited to have finished the 2009, 2010, and 2014 Lake Placid Ironman, 2016 Ironman Mont Tremblant, the New Jersey Marathon, Rock n Roll Arizona and San Antonio Marathons, ING NYC Marathon, Mohawk Hudson Marathon, and the Vermont City Marathon. I have also run lots of other running races and several 70.3 races. I love racing and triathlons. This is a blog about training and racing!
About Me
- Kelly
- I am a biology teacher by day but a crazy triathlete and runner at all other times.
Saturday, March 3, 2012
Thursday, March 1, 2012
Facing a little reality
Most of those races I had planned on doing this year have had to be put on hold. I started writing, calling, and emailing people yesterday to cancel flights, hotels, and race entries. Although everyone has been extremely understanding, it is extremely difficult for me to handle knowing that all that I had planned for and worked for will not be happening and for the most part I will be watching all of my friends compete. The thing that is getting me through this tough time is knowing that I will someday compete in them again. The worst part though is that I am still in training mode - running and biking at least. I just want to get in as many miles as I possibly can before the surgery to ensure that I will be in great shape and have a rapid recovery after the surgery.
Next on the schedule, cutting my hair off next week. Joe and I discussed this and decided that in order to allow for him to take care of me and for me to ultimately take care of me, I cannot have the length of hair I currently have. So, I will be donating my long hair to locks of love and then going super short. If you have any ideas, send me pictures or ideas. This is also difficult as I love my hair right now and this makes having cancer even more of a reality.
I am finding a lot of hope and inspiration in a blog http://athletefightscancer.blogspot.com by Jen Hanks who is a professional mountain biker. I feel that I have found someone to identify with since our goals were very similar before we were diagnosed and after we were diagnosed. She has returned to professional racing and even though I am not a professional athlete, I am an athlete who needs this part of my being to be successful. She is also helping me make even more lists of questions to ask. Her success is extremely helpful to me as is Michele Wilkinson: http://gazettextra.com/news/2010/aug/31/michele-wilkinson-doesnt-allow-breast-cancer-slow-
I have to figure out how to contact these people to talk to them to help me out!
Next on the schedule, cutting my hair off next week. Joe and I discussed this and decided that in order to allow for him to take care of me and for me to ultimately take care of me, I cannot have the length of hair I currently have. So, I will be donating my long hair to locks of love and then going super short. If you have any ideas, send me pictures or ideas. This is also difficult as I love my hair right now and this makes having cancer even more of a reality.
I am finding a lot of hope and inspiration in a blog http://athletefightscancer.blogspot.com by Jen Hanks who is a professional mountain biker. I feel that I have found someone to identify with since our goals were very similar before we were diagnosed and after we were diagnosed. She has returned to professional racing and even though I am not a professional athlete, I am an athlete who needs this part of my being to be successful. She is also helping me make even more lists of questions to ask. Her success is extremely helpful to me as is Michele Wilkinson: http://gazettextra.com/news/2010/aug/31/michele-wilkinson-doesnt-allow-breast-cancer-slow-
I have to figure out how to contact these people to talk to them to help me out!
Monday, February 27, 2012
I have cancer
At 33 years old, I am an Ironman and a 5 time marathon finisher. I will also be a survivor of breast cancer. As I was training for the 2012 Lake Placid Ironman, I was diagnosed with stage 2 infiltrative ductal carcinoma. This has stopped my training for the 2012 Ironman and made 2013 a possiblility. I want to tell my story because I am trying to find people much like me out there and am realizing there aren't many. I thought this may be a good place to express myself and show that there are good days and there are bad days but ultimately, I will be alright.
Here is the beginning of my story.
February 1, 2012: I had a routine GYN appointment where my doctor found a small mass but thought that it was probably a cyst. He recommended that I go to get a mammogram and an ultrasound to just check it out since my mother and maternal grandmother both had breast cancer and my mother is BRACA 2 positive.
February 8, 2012: I went for my first mammogram ever. It was followed by an ultrasound where I realized that something was wrong. The ultrasound technition was spending a lot of time taking pictures and making notes on a generallized area and then she left saying that someone would be right back in to discuss the results. As another nurse came in, she told me that there was a defined, solid mass that they had decided to biopsy immediately. They allowed me to call my husband and go to the bathroom but then they started the biopsy immediately. I had a core needle biopsy which wasn't painful but the experience was emotionally challenging and absolutely frightening. After the biopsy they placed two titanium tags in the two masses they found to show that they had noticed these before and had tested them. I then had the ability to joke that they were literally making me an Ironman (I know as a science teacher that iron and titanium are different but it's still funny). I left the biopsy and did research on the rates of cancer found and felt pretty positive that I didn't have cancer as many sites, including the American Cancer Society website, claimed that there was a 4 out of 5 change that it wasn't cancer. I had actually negotiated with the doctor who did the biopsy on when I could start running, biking, and swimming again so that I could get back to training.
February 13:
I received a phone call from my gyn doctor telling me I had stage 2 infiltrative ductal carcinoma and my entire world starting spiraling out of control. I was at work surrounded by my friend Heather and Jeanne who were holding it together really well while I was falling apart. I was told I would have to see a breast surgeon on February 15 to discuss surgical options. I felt that my Ironman training was brought to a screaching halt. How do you tell your husband you have cancer? I didn't know what he would say. My husband was extremely calm and knew that no matter what I would be ok. My way of dealing with this stress was to go to a spinning class. I hated every minute of the class because I wanted to scream and yell and throw things but I took it out on the bike. I then had to tell my sister and my parents because I needed medical history information. This was extremely difficult.
February 15:
My appointment with my breast surgeon was at 8 am. He told me that I had two masses, the cancerous one is 1 cm and the other one is non cancerous but 4 cm large. He went over all of my options and answered all of my questions. He gave me a lot of information but also said he thought one of my lymph nodes may have been a little inflamed but since I was extremely bruised and swollen from the biopsy, it may have been from that. I left thinking it was worse than I thought but Joe left feeling completely informed and confident in the fact that I would be perfectly fine. I was given a packet of information which was supposed to help me with this diagnosis but all it did was make me more angry. I went through the entire pack with my friends and just asked why would they need to tell me over and over again that I have cancer. I was extremely angry at the entire situation. I knew that Ironman was out of the question. I also kept thinking that I have eaten well, exercised a lot, and lived a healthy lifestyle so how could this happen to a 33 year old Ironman. I went to work and did my job and then called Stacy frantically asking if she would go for a run with me. This settled me down enough to proceed into the next day for the 2 oncologist appointments that were set up.
February 16:
How did I go from training for an Ironman to being a cancer patient in one week? Going to an oncologist made me an actual cancer patient. First up was the medical oncologist. This doctor answered every possible question and made me feel extremely confortable with my decisions. I realize that I need to live with this decision for the next 50 years of my life and I need it to be the correct one. This oncologist also said that if the MRI that was scheduled for Friday and the FISH (HER2neu) test came back negative, then there was a very possible chance that all I would need is surgery and hormone treatment (Tamoxifen) which was a perfect world solution to having cancer. The radiologist was amazing too and answered all unanswered questions. We left 5 hrs of appointments knowing that I needed to have a bilateral mastectomy since, with my family history, there is a good chance I would have to deal with this again in the future if I didn't. I also knew that I was not going to opt for reconstruction at this point. Wow, that is a big decision. Why did I opt for this? Because I am an athlete that wants to keep pursuing my long distance athletics without having to dedicate myself to the next two years of surgery after surgery. This is the decision people don't know how to deal with. I had all of our friends and family hoping that FISH was coming back negative and my lymph nodes would be clear. By having a mastectomy, I was also decreasing my chances of having radiation as well unless the lymph nodes are involved. This was a positive day!
February 17:
MRI - no one could hurt me here so it was a relaxing situation and I was on vacation after this appointment and headed to a vacation in Florida which was now meaning more than it did before. Everyday, I went for a run on the beach and a walk on the beach with my husband which help ease away all stress that was present.
February 27:
After a fabulous vacation where I was on a beach where nothing bad could happen to me, I had a really bad day on Sunday. I realized that when important appointments were coming up, I get extremely nervous and emotionally break down. I am an extremely strong woman with very little crying on a normal basis but this situation makes me feel like a cry baby. I again went for a run and Jen and I discussed how although I am a strong woman, there are days that won't be great and I don't have to be a strong woman all of the time. The big appointment of this day was with the surgeon where we were finding out the FISH test and MRI results and booking surgery. The first piece of information was extremely disappointing - FISH was positive. This means 1 year of Herceptin - a chemotherapy drug. I will be having surgery on March 15 and will be having a port put into place to make chemo a little easier. This was difficult to hear. I went home and got on my trainer and did a hill workout.
So, here comes the journey. I will be great but my life will change. Hearing Mike Riley say "You are an Ironman" is all I am hearing in the back of my mind. On a positive side, I will be losing about 10 lbs due to this surgery so I will be able to buy and fit into cute new running and biking clothes. If the stat is true, I should be 2 min per mile per lb lost faster in running. I would also be able to attack those Lake Placid hills more aggressively without the extra weight on me. I have decided that cancer has one year of my life and that is all. I will move forward stronger than ever and will fight for my goals and dreams for the rest of my very long life.
Here is the beginning of my story.
February 1, 2012: I had a routine GYN appointment where my doctor found a small mass but thought that it was probably a cyst. He recommended that I go to get a mammogram and an ultrasound to just check it out since my mother and maternal grandmother both had breast cancer and my mother is BRACA 2 positive.
February 8, 2012: I went for my first mammogram ever. It was followed by an ultrasound where I realized that something was wrong. The ultrasound technition was spending a lot of time taking pictures and making notes on a generallized area and then she left saying that someone would be right back in to discuss the results. As another nurse came in, she told me that there was a defined, solid mass that they had decided to biopsy immediately. They allowed me to call my husband and go to the bathroom but then they started the biopsy immediately. I had a core needle biopsy which wasn't painful but the experience was emotionally challenging and absolutely frightening. After the biopsy they placed two titanium tags in the two masses they found to show that they had noticed these before and had tested them. I then had the ability to joke that they were literally making me an Ironman (I know as a science teacher that iron and titanium are different but it's still funny). I left the biopsy and did research on the rates of cancer found and felt pretty positive that I didn't have cancer as many sites, including the American Cancer Society website, claimed that there was a 4 out of 5 change that it wasn't cancer. I had actually negotiated with the doctor who did the biopsy on when I could start running, biking, and swimming again so that I could get back to training.
February 13:
I received a phone call from my gyn doctor telling me I had stage 2 infiltrative ductal carcinoma and my entire world starting spiraling out of control. I was at work surrounded by my friend Heather and Jeanne who were holding it together really well while I was falling apart. I was told I would have to see a breast surgeon on February 15 to discuss surgical options. I felt that my Ironman training was brought to a screaching halt. How do you tell your husband you have cancer? I didn't know what he would say. My husband was extremely calm and knew that no matter what I would be ok. My way of dealing with this stress was to go to a spinning class. I hated every minute of the class because I wanted to scream and yell and throw things but I took it out on the bike. I then had to tell my sister and my parents because I needed medical history information. This was extremely difficult.
February 15:
My appointment with my breast surgeon was at 8 am. He told me that I had two masses, the cancerous one is 1 cm and the other one is non cancerous but 4 cm large. He went over all of my options and answered all of my questions. He gave me a lot of information but also said he thought one of my lymph nodes may have been a little inflamed but since I was extremely bruised and swollen from the biopsy, it may have been from that. I left thinking it was worse than I thought but Joe left feeling completely informed and confident in the fact that I would be perfectly fine. I was given a packet of information which was supposed to help me with this diagnosis but all it did was make me more angry. I went through the entire pack with my friends and just asked why would they need to tell me over and over again that I have cancer. I was extremely angry at the entire situation. I knew that Ironman was out of the question. I also kept thinking that I have eaten well, exercised a lot, and lived a healthy lifestyle so how could this happen to a 33 year old Ironman. I went to work and did my job and then called Stacy frantically asking if she would go for a run with me. This settled me down enough to proceed into the next day for the 2 oncologist appointments that were set up.
February 16:
How did I go from training for an Ironman to being a cancer patient in one week? Going to an oncologist made me an actual cancer patient. First up was the medical oncologist. This doctor answered every possible question and made me feel extremely confortable with my decisions. I realize that I need to live with this decision for the next 50 years of my life and I need it to be the correct one. This oncologist also said that if the MRI that was scheduled for Friday and the FISH (HER2neu) test came back negative, then there was a very possible chance that all I would need is surgery and hormone treatment (Tamoxifen) which was a perfect world solution to having cancer. The radiologist was amazing too and answered all unanswered questions. We left 5 hrs of appointments knowing that I needed to have a bilateral mastectomy since, with my family history, there is a good chance I would have to deal with this again in the future if I didn't. I also knew that I was not going to opt for reconstruction at this point. Wow, that is a big decision. Why did I opt for this? Because I am an athlete that wants to keep pursuing my long distance athletics without having to dedicate myself to the next two years of surgery after surgery. This is the decision people don't know how to deal with. I had all of our friends and family hoping that FISH was coming back negative and my lymph nodes would be clear. By having a mastectomy, I was also decreasing my chances of having radiation as well unless the lymph nodes are involved. This was a positive day!
February 17:
MRI - no one could hurt me here so it was a relaxing situation and I was on vacation after this appointment and headed to a vacation in Florida which was now meaning more than it did before. Everyday, I went for a run on the beach and a walk on the beach with my husband which help ease away all stress that was present.
February 27:
After a fabulous vacation where I was on a beach where nothing bad could happen to me, I had a really bad day on Sunday. I realized that when important appointments were coming up, I get extremely nervous and emotionally break down. I am an extremely strong woman with very little crying on a normal basis but this situation makes me feel like a cry baby. I again went for a run and Jen and I discussed how although I am a strong woman, there are days that won't be great and I don't have to be a strong woman all of the time. The big appointment of this day was with the surgeon where we were finding out the FISH test and MRI results and booking surgery. The first piece of information was extremely disappointing - FISH was positive. This means 1 year of Herceptin - a chemotherapy drug. I will be having surgery on March 15 and will be having a port put into place to make chemo a little easier. This was difficult to hear. I went home and got on my trainer and did a hill workout.
So, here comes the journey. I will be great but my life will change. Hearing Mike Riley say "You are an Ironman" is all I am hearing in the back of my mind. On a positive side, I will be losing about 10 lbs due to this surgery so I will be able to buy and fit into cute new running and biking clothes. If the stat is true, I should be 2 min per mile per lb lost faster in running. I would also be able to attack those Lake Placid hills more aggressively without the extra weight on me. I have decided that cancer has one year of my life and that is all. I will move forward stronger than ever and will fight for my goals and dreams for the rest of my very long life.
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