While talking to a case manager and fellow breast cancer survivor she told me the way I said "hello" to her sounded like the automated voice mails form the hospital. This in turn set me off on repeating the entire message we usually receive. We chuckled and she mentioned that she was expecting one of those calls soon. She was due for her mamomgram and was going to see the NP for the breast surgeon. I told her I will never forget the NP because she is the one who called and told me I had cancer. She told me she was the same and we compared stories. At this point it has been 5 years for the case manager (CM) and 2 years for me. You would think it happened yesterday with the amount of detail that we both could recall.
CM: I remember she called me I was in the parking lot on the way out of work. She asked me to come back in, I said "No, just tell me". She told me. I said "ok". I got in my car and went to visit my husband's grandfather. He had raised my husband and when I went to see him, he let me know that he had just found out he had lung cancer with mets to the brain and his time was limited. I sat and talked with him, never telling him the news of my day. I met my sister and her family for dinner. I hadn't told my family yet, so I couldn't tell her. I finally drove home and found my husband sitting on the porch. I looked at him and said "Do you want Papa's news or my news first? Because we both have news". He asked for mine and then Papa's. He to this day says it was the worst day of his life. It then took a couple of days to gather my boys together because one worked the day shift and the other the night shift. Finally two days later at 10:30 pm I got them both together. Because they were boys they didn't know anything about mamograms and I had to answer a lot of questions. Particularly from my younger son. Throughout the next week I told my sisters and then it was time to tell my mother. I visited her at my sisters home and told her. She asked me if that is why I lost so much weight. I was mad. I had worked my butt off for my 50th birthday to lose 25 pounds. I assured her that it was from Weight Watchers. And you?
I told CM my story. I told her how I was at my mother's and had waited until my father came home and was done telling us a story before I told him. My heart has never beat so hard. I felt like I was disappointing my parents because I had cancer. I told her how I sent my father out to go get chocolate and the owner of the market told him he was a cancer survivor from Lahey Hospital (my hospital) too. I told her about calling my brother and he still being at work (damn time difference) and not wanting to tell him, but doing so upon his insistence.
It is funny that CM and I discussed this. 2+ years since the "phone call" from the NP. This year around my diagnosis day anniversary people started telling me about how they received the news. Barely anyone told me about how they reacted a year ago. I found out that I ruined the remainder of a friends trip. I found out how many of my colleagues cried when my boss called them. My friend who I called while she was driving and asked her to pull over recently told me how she sat in the parked car for nearly 20 minutes trying to process the news. When you are in the fight you have to focus on you, but years later it is amazing to see the ripple effect my diagnosis of breast cancer had and the same way it rippled for CM. We both live different lives but have such as strong bond over shared experience of breast cancer. Having breast cancer friends splattered through out where you work does wonderful things for piece of mind.
As previously mentioned I have adapted the rules of improv and applied them to my life. The rule of "Say Yes And..." has led to a lot of fun. This weekend it also made me agree to something that I would have automatically said no too before cancer: Distance Running.
Monday August 25th at 7:12 am I got a text message from a friend from grad school:
Hi there, any interest in distance running? My reach the beach team is down 3 runners. It's on the 12-13th. Pleeeease??
A quick google search to see what reach the beach was, some negotiations with my boss for the day off, and by 9 am I was in. Me, a 400 m runner, agreed to a 207 mile relay from the mountains of New Hampshire. I mean she did ask nicely. Did I mention that I hate hills? But, it sounded fun. 12 people, 2 vans, running in the middle of the night? Say Yes and I'll bring cookies.
Thankfully, the Saturday before my friend's text message I woke up and because it was cool out, just kept running and had done 7 miles. This let me know that it might not be super dangerous to say yes to this relay. That I might not completely destroy my legs. Three weeks of distance training that should be enough right? I ran my 7 mile route 4 more times and 6 miles with one of my colleagues from work. In true sprinter fashion, that seemed like plenty to me.
Around 1.5 weeks ago our team captain sent out our assignments. I was officially Runner #5 in Van 1. Reach the Beach is a Ragnar Relay. These means that the race is set up over usually ~200 miles and is divided into 36 segments so every runner runs 3 separate legs. The race is continuous and goes over night and lasts >24 hours.
Runner #5, I looked at my legs: 5, 17, 29.
Leg #5. 5.6 miles, downhill. Rated by race officials as Hard. I can do that.
Leg #17. 9.1 miles, 5.5 uphill. Rated Very Hard. Crap. I mean I've run 7, it should be fine. But, crap I hate hills.
Leg #29. 4 miles, relatively flat. Rated Moderate. Now, this one I know I can do!
I started to mentally prepared myself to run this far. I also learned the importance and greatness of body glide. If you ever want to stop chaffing or blisters this stuff is amazing. The 9.1 miler seemed really daunting. But, I emailed the captain and told her that I had put in 9 min mile for my pace. Told her I was sure I might be able to go faster but, was convinced that 9 min mile would be something I could hit. Her email back set the tone, "Not to worry. We aren't trying to win, we are going for fun." Right! For fun! Awesome.
Everyone who knows me as a runner was super surprised to hear that I agreed to do this. I have been known to refuse to run longer than 2 miles at a time. My old training partner may have said that I was crazy, but that this did sound fun. She understands the "Say Yes and..." attitude. She has it herself.
Thursday came and it was time for the pasta dinner at the team captains house. I showed up with all my gear and started to meet the rest of the team. I knew 2 out of the 14 people (12 runners and 2 drivers) that comprised our team. Our team name, Team Nerd Tidal Wave. Obviously, I was going to fit in. We discussed blogs and baking over dinner. These were my people. When we picked up our two missing runners for Van #1 we discussed the joy of making lists and picked up the last runner from grad school for mechanical engineering. Team Nerd Tidal wave indeed.
Thursday we drove to Cannon Mountain for our 9:45 am start on Friday morning. We stayed at a motel and my foot cramps made a major appearance. We got to the motel at 11:30 and I finally fell asleep at 12:30 am and my foot cramps woke me up at 3:45 am. And, I was not able to go back to sleep. Great. Last time I'm going to be able to sleep until Saturday night and I sleep 3 hours. Well, I am used to being tired, so that's a bonus.
After a couple of registration snafus our first leg was off at 10:15 am to start running through the mountains. We loaded into the vans and you stop at various intervals to provide your runners with water/gatorade. It was great fun. You also use various stationed port-o-potties across the state of NH and copious amounts of hand sanitizer, not the highlight of the race.
After the first 4 runners it was time for Leg #5. I told the runner #4 I would like to do a blind exchange a la 4x1 for the baton/slap bracelet exchange. Thankfully, he found it funny. And around 1 pm I was off to run alongside the White Mountain National Forest. The views were spectacular. The air was crisp, the sky so blue and you could see for miles and miles. And I was out there running. I met my team close to 3 miles into my 5.6 miles looked at my watch and went "Sh*t". I was running too fast. This was my first run and I was about to shoot myself in the face for the rest of my runs. What did I do? I kept the pace going. I thought I had much further to run and had slowed my pace but saw the "approaching transition area" sign and sped into it and handed off the baton/slap bracelet. Stopped my watch. 39:10. 7:00 min/mile pace. "Course must be short" was my first reaction. Second reaction was, "Crap, I hope I can run more". Never ran that far that fast. Milestone #1 for this "say yes and adventure".
We wait for our 6th runner to finish hand the baton/slap bracelet off to Van #2 and get something to eat because up next is food! We eat some dinner/lunch in North Conway and then proceed to the leg 12 to 13 transition zone. My legs are already a little achy and I am happy we've arrived early so that I can lay flat on the ground for about an hour before it's time to get back in the van and support our runners. The temperature is dipping below 50 and you can make out all the stars in the sky. I am looking forward to night time running but I am still afraid of the 9.1 miles ahead of me.
Then as I am dressed in my shorts and tshirt with the head lamp attached and a reflector vest that is decorated in Christmas lights I look at my friend from grad school and say "You know what pep talk I need to give myself right now." "No, what" "I've had chemo 9 miles ain't no thing. Bring on the hills, I beat cancer. I beat cancer, I can do anything". As no one else in the van knows me there is silence and one of the woman I just met looks at me and says (in all seriousness) "Awesome pep talk". At 11:30 pm at night facing 9.1 miles with 5.5 uphill I forgot my filter and we have reached awkward overshare time.We had a discussion of where to put the Christmas light battery pack and my automatic reaction is "In my sports bra, where I put everything during a run. I only wear one out of social convention". In the sports bra a pack of 4 AA batteries go.
At 11:47 pm I get the baton. Running with a headlamp and in Christmas lights can only be described as pure fun. I am running from Meredith to Laconia. The first 5.5 miles there is a 775 foot increase in elevation. I am checking my watch at the known mile markers. 1.8 miles at the traffic rotary, ok I am on 9 minute mile pace. I start talking to myself about how many more minutes, but not miles I have to run. On some of the steeper parts I sing "Just keep swimming" to myself. I tell myself to recover on the flats and just keep pushing on up the hill. I just keep climbing and then a funny thing happens. I hit my runners high early. I coast by my teammates, take a swig of gatorade, panic that they tell me I've only completed 3.6 miles, they are telling me only 3.6 to go because they are exactly at the 5.5 mile mark like I ask. I fist pump and cheer and speed on by. I cannot even tell you how happy I was at that point and how great my legs felt. I had stopped looking at my watch and just started to lean into the downhill. I kept picking other runners off, cheering them on as I passed. Other vans shouted how much they loved our Christmas lights and I would cheer back to them. I decided to glance at my watch. I had been running for over an hour. 1 hour 6 minutes. Officially the longest I had ever run in my life. My hamstrings and calves were not having that much fun at that point but I was able to bring it on home. Longest run ever. 9.1 miles and I finished it in 76 minutes. 8:20 min/mile pace. I was beyond pleased. My goal was faster than 90 minutes. My teammates called me a "beast". Not bad for a last minute addition who awkwardly overshares.
After runner number 6 finishes we go to our next transition area as Van #2 begins their night running. We stop in the woods and attempt to sleep in a van. At 3:30 in the morning. I've officially been up for 24 hours and my legs are not happy with me. I eat a couple of peanut butter sandwiches and attempt not to keep everyone else awake. At 6:15 our van is awake and eating again and we definitely were getting a little slap happy. Brushing your teeth is deemed the most refreshing activity ever created.
Around 8 am our vans runner is off and we are on the road for support. Around 12 noon I am ready for my last run. I am walking with an awkward gait and my hamstrings have had enough. I can outline every muscle that is included in the quadriceps but I take the baton/slap bracelet and I'm happy to be on my last run. The course book says "flat". By "flat" they mean rolling hills. At this point I am cursing the hills. Thankfully, by the time I hit halfway they are done. My hamstrings and quads are really, really mad at me at this point but I am still able to go at 8 min/mile pace. At 3 miles I start thinking about how much money I would have paid for this leg to only been 3 miles and not 4.1. I keep trucking and am so unbelievable happy to see my friend and hand off the baton.
We eat pizza and then meet van #2 at Hampton beach so all 12 of us can run across the finish line together. We reached the beach and my legs have never, ever hurt more. My hips and knees ache. My calves, quads and hammys are pissed. Somehow even my arms and chest hurt. But, I am super proud of myself. I look around at the finish line and pick out some folks that I am sure the others might not see. I want to hug the woman whose hair obviously just came back in from chemo and her whole team "Sistas with blistas" as they all ran for her. In pink. You rock on sista friend. I didn't catch the team name, but I absolutely take the photo for a team who have the woman in a bandana who they were all running for in the center of their photo. I am happy to see the team we ran into often at the transition area the "Vermonsters" a group of older woman who have various colors of ribbons decorating their vans. I am happy to be able to see many of my fellow cancer survivors and give them the "nod".
Say Yes AND run more miles than hours you've slept since Thursday night. Say Yes AND make new friends and find the pure bliss that running can be. Say Yes AND do something you've never even thought you can do and do it better than your wildest expectations. Say Yes AND put body glide in between your toes.
And in honor of the team "Tramps Like Us" a little repeat of Bruce
They warn you that calf cramps are a side effect of tamoxifen. Thankfully those charlie horses happen only about once every three months. However, what seem to be coming fast and furious and with out fail at 3 am are foot cramps. Foot cramps where your toes decide to swap position on your feet only to realize that they cannot make the distance. I wake up about 3 milliseconds before the cramp happens. The point where your toes start to curl and you say out loud "nooo" and then jump out of bed to try to put the ball of your foot on the floor.....but to no avail. The cramp has occurred. And you stand there in the dark, cursing and attempting to alleviate the cramp. Often they are gone within a few minutes. And then you try to go back to sleep while trying to keep your toes spread out like there is an invisible foam toe separator (like they use for pedicures). Inevitably, if my foot cramps once it will cramp 3 times before I can go back to sleep or throughout the rest of the day.
Today I'm already at 3 foot cramps and the foot of selection is my right foot. I was whining about the foot cramps (and sleep disruption) at work the other day and a fellow breast cancer survivor commiserated about them. Oddly, she also found that the past month they have been really bad. Most be something in the air.
People believe that it is some birth right that they be able to live until they are 90 years old with minimal complications. Folks often take for granted that the years fly by on the calendar and believe they are owed more birthdays. This is one of the greatest myths of life that everyone is instilled with unless they have seen or experienced otherwise.
We are not promised long, healthy lives.
We are not promised long lives. We are not promised healthy lives.
Sometimes inexplicably bad things happen to good people. Repeatedly. These folks understand that a long, healthy life is a myth. Today, was one of those days at work that reminded me that not everyone is aware that there is no promise of a long life. I will not repeat the horrific story here, but the death of this young patient has me shaken to the core. She didn't die of cancer, but the manner of death really isn't the issue. In a brief period of time she has passed on. There is an absolute finality and sadness of it reverberated through the hospital today. It has reminded us that as much as we want to believe the myth, we can't.
Today, I am officially 1.5 years cancer free. Today, I am reminded that life is meant to be lived. Every moment of every day because we are not promised long, healthy lives. Today, I am reminded to be grateful for being alive and having more time to fly by on the calendar. Today, I am thankful that those in my life are working towards their long healthy lives. Today, I am here and I am present.
One of the nurses at work finished her breast cancer treatment July 21st. Earlier in the week we ran through the protocols for the different clinical trials we are both on. She had post menopausal ER+/HER2- stage III cancer. We were discussing about how my trial requires MUGA scans and her's will just involve blood work and making sure she does not get too immunosupressed (not good for an ICU nurse who has direct patient care).
This morning however, was a classic interaction between two survivors.
Survivor #1: I drank too much alcohol last week. My oncologist told me I could have a couple of drinks a week.
Survivor #2: I haven't had an alcoholic beverage in 2 years.
#1: Ok, so you just completely abstain.
#2: Right, if I'm going to take the tamoxifen every day to lower my circulating estrogen level then I'm not going to do anything to raise it.
#1: Well, but does the tamoxifen lower it that you wouldn't be working against it to have the occasional drink?
#2: I don't know.
#1: What I'm really struggling with is what to do when we are out with people and they order another drink and I've had my one.
#2: I order dessert.
#1: Well, we both know that too much sugar isn't great...
Other nurse caught in the crossfire: You two have been through so much, you should just do whatever you want. You've worked so hard to get where you are.
#1 and #2 give other RN look. Both telepathically communicate "Right we've worked really hard to get to this cancer free place, and we want to stay here. So please excuse us while we compare the size and color of our crazy pants".
#1: Another survivor told me that I shouldn't eat anything that came from another mammary gland. Do you eat cheese and milk, etc? I try to limit it.
#2: I eat dairy like it's my job. I go through a gallon of milk a week. And I cannot give up yogurt.
#1. Organic, obviously.
#2. Obviously.
#1. I can't give up yogurt. I love it with berries and Grape Nuts.
#2. Oh, I was so excited when they reformulated to make them Soy free!
#1. I know! I need the crunch. Also, are you one of the natural deodorant people?
#2. I was, I read some more research and realized I didn't need to smell on a daily basis and went back to my full strength deodorant.
#1. Yes, it lasted 35 seconds until I was done with radiation then I switched back.
#2. How is running going now that treatment is completely done?
#1. I had the best run of my life last night and ran my 4 mile loop 2 minutes faster than I ever had. I am so excited.
#2. That is awesome.
The longest conversation I had with this nurse before either of us were cancer survivors was to ask why a patient's tube feeds were turned off. Previously, she scared the crap out of me. Today, we chatted like we had been friends for years. That is the amazing common denominator that is cancer. Everyone has a shared experience and even in survivorship you just want to make certain that people are having the same thought process. And guess what? We all are.
Today it has been 2 years since the nurse practitioner called and said "You have breast cancer". As I fully believe that I should celebrate all anniversaries big and small today was no different. This years celebration was similar to last years celebration, with one major detail. This year both my mother and I didn't even realize when 3:30 pm came around. Last year we both totally fixated on the time and date. This year I woke up to a Happy Anniversary from her and my Aunts. (Like last year we were at one of my favorite places on earth, Lake Sunnappee). But, not until I started typing this post did I realize that both of us just happily bopped along in the car and the time past with out recognition. This is what other cancer survivors have told me about time and how you really do think about having cancer less. This time last year I would have thought they were nuts. This year I was busy scanning the radio for a song to sing along/torture my mother with and the time passed. I noted about 5 days ago my cancer friend Stacey had posted this to her facebook page:
"Ya
know how I know I keep sticking it to cancer? Cause yesterday marked 3
years ago when I heard the words confirming I had cancer... And I forgot
about it yesterday . Better yet, last night 3 Doors Down sang my conquering cancer song "Let me be myself". Eff you cancer, eff you."
Just think August 8, 2015 I might even forget it is my diagnosis day. Likely not, because I do like all these celebrations.
Although I missed the time, the day was fully recognized. I celebrated with a run (and thankfully one that felt reallly, really good on my legs) and it was reasonably fast (7:30 mile pace). I had some breakfast and then was able to spend some time out on the lake by myself in a kayak. It was a gorgeous, peaceful morning. And it was a nice to be able to celebrate the day with a quite brain soaking in the sunshine.
It was a great day to spend with my family capped off by a great dinner with my parents and the ultimate celebration food......Chocolate Chip Bread Pudding. For real. Chocolate Chip Bread Pudding. My two favorite things together.
And to follow the tone that Stacey set at the beginning of the week here is a repeat of my conquering cancer song. I still love this song and sing it loudly and fist pump proudly to it.
Today was a standard built in follow up for the PRESENT trial. It involved blood, urine and physical exam.
Easy. Peasy. Lemon. Squeezy.
My veins have really fully recovered. 7 tubes of blood, one stick. No problem.
Chatted with the Nurse Practitioner, we discussed running. We talked about how terrible my legs felt in May and early June. She did tell me that many of my symptoms could be attributed to tamoxifen, so I am not crazy for blaming my creakiness and stiffness on them.
And then I didn't have to have anything injected into my legs and I was free to return to work.
