title

Photo by Jason DeVarennes

Thursday, April 30, 2015

Dear Cancer, You may slow me down, but you won't stop me from riding my bike!

This post was mostly written in my recliner at Mount Auburn Hospital Medical Oncology Department. I have treatments every three weeks, and treatment day is the one day where I sit still long enough to write a blog post!

The shirt is to support a fellow cyclist battling cancer along with being run over by a car. Read about Lynn here http://www.caringbridge.org/.../id/55005bf9ca16b44f0761bc73. And support Lynn's PT here http://onetoughbitch.com/

Biking to/from chemo!
For the chemo treatments, I like to imagine that we are battling my tumor, Davros, by pumping miniature Daleks into my veins. It is fitting that the exterminating obsessed Daleks are Davros' own creation, who have ironically turned on him because he isn't pure Dalek. So they now focus all their exterminating rage onto Davros himself.  As his current host and life support system, I will suffer some side effects from the battle, but I will live on, long after Davros is exterminated! Their attack is focused on exterminating him while saving me.



Since my last post, written on the day of my last treatment, I have been very busy. We have bought a new house in Western Massachusetts (or rather, we are in the process of doing so). It's brand new, and we're just waiting for some finishing touches, and will hopefully close soon.

In the meantime, I have been packing up our current house, near Boston. This actually needed to be done anyway, because we had so much damage from ice dams this winter. We currently have no interior walls in our kitchen, dining room, master bedroom and master bath. Kitchen cupboards are sitting on the floor in the dining room. Part of our hardwood flooring and ceilings are also missing. All the wet insulation has been removed, and everything is now dry. We did manage to keep the sink connected and got our stove hooked back up. We have some wire shelves to store stuff we need for cooking. We are sleeping in our guest room. Life in a construction zone!

We've been living in this state since early March. Because so many folks in the area suffered similar damage, there are long waiting lists to get repairs carried out. However, we've finally moved near the top of the list, so repair work should start very soon. Starting at the top, we replaced our roof a couple of weeks ago. Moving inside, the open plan design means that the wood floors run throughout the house.  After replacing what was torn up, we'll have to have all of them sanded and refinished. And because the ceiling is continuous and textured, we will also have to have the entire ceiling refinished too. This means that we literally have to pack up and move out. While thinking about all that trouble, we decided it would actually just be a good time to move some place else!

I've been lobbying for a move for a while. I'd tossed out suggestions of Northern Vermont, Oregon, southern France, and northern Italy many times. John works from home, so home could be literally anywhere.  As we contemplated the reconstruction, we just started tossing out some possibilities, and I did some on-line searches and found a few interesting looking places in Greenfield, a charming, but affordable town, partway between hip and trendy Northampton and the Vermont border. The Greenfield/Deerfield area is familiar to the many cyclists who have taken part in D2R2 and enjoyed its wonderful, quiet, scenic (and hilly!) roads. The town has has an awesome coffee shop, a couple of coffee roasters, a great brew-pub, a food co-op, along with many great restaurants. It also has easy access to I-91 and Route 2, making it a simple and quick drive to visit our friends in Connecticut to the south and up to more cool cycling in Vermont to the north, along with Boston to the east. Greenfield even has a brand new Amtrak station, with a train that should soon allow roll on bikes service again!

Then cancer invaded our lives and we decided to seize the day, while still planning for our future. Now I still think that Boston is a great place. It is a small city - geographically, with big city amenities. The cycling nearby is wonderful. We have access to awesome hospitals (I wonder why that features on my list?), great bike shops and have many good friends here. It is a pleasant 4 mile walk along the river for me to get to the hospital where all my doctors are. But the cycling is even better just 90 miles away in the Pioneer Valley. And while I can't walk to Mount Auburn from there, it is only a 90 minute drive. Besides cancer is a temporary glitch and soon will be gone, and then we'll just have great riding out the door every day.

So a few weeks ago, we sent a list of prospective houses to a real estate agent in Greenfield and packed up the tandem and took a drive out. We looked at several places, and found one we loved. We put in a preliminary offer a few days later and then went back out the day after my first chemo treatment to put in the final offer and meet with the builder. The place is brand new and Energy Star certified. This was a big appeal, not just because of all the damage caused by inadequate insulation at our current place, but because we truly value energy efficiency. Of course, bike storage was also a big factor, and the full basement will soon be filled with bikes, skis and other toys.

So between packing, paperwork and planning, I've also made time to ride the bike. I have ridden to doctor and PT appointments, as well as getting out for fun.

Photo courtesy of Cathy Rowell, the Dragon's Tail on the RSC Diverged Ride


I've heard this story a few times and want to share it again. I found this version here.


Five students of a Zen master was back from the market on their bicycles. As they dismounted, their master asked : Why are you riding your bicycles ?”

Each of them came up with different answers to their master’s query.

The first student said “It is the bicycle that is carrying the sack of potatoes. I am glad that my back has escaped the pain of bearing the weight”

The master was glad and said : ” You are a smart boy. When you become old you will be saved of a hunch back unlike me”

The second student had a different answer. ” I love to have my eyes over the trees and the sprawling fields as I go riding”

The teacher commended : “You have your eyes open and you see the world”

The third disciple came up with yet a different answer : ” When I ride I am content to chant ‘nam myoho renge kyo'”

The master spoke words of appreciation ” Your mind will roll with ease like a newly trued wheel”


The fourth disciple said : “Riding my bicycle in live in perfect harmony of things”


The pleased master said ” You are actually riding the golden path of non-harming or non violence” The fifth student said ” I ride my bicycle to ride my bicycle”

The master walked up to him and sat at his feet and said “I am your disciple!”

Now I am no Zen Master, nor claim to have the wisdom of his disciples, but I ride my bike for all the reasons the five disciples gave, with the final reason being the best reason of all.  I ride for transportation, for fitness, for convenience, for new sights and sounds, for serenity, for energy efficiency, for time to think, for having fun with friends, for seeing new places, for de-stressing and for fun. Cycling is a fundamental part of who I am. Cyclist is one of the first labels I use to describe myself. And I refuse to lose this part of me.

Photo courtesy of Cathy Rowell, the Dragon's Tail on the RSC Diverged Ride

I have battled back from my back injury, thanks to modern medicine and hard work. The bike has been part of my strengthening regime as well as a way to get to and from appointments. One of my big goals in PT is to regain my strength and fitness and get back to my old self on the bike.

I want to be clear that my back hurts because I got hit by a truck and broke my back. This makes cancer harder to cope with. Not the other way around. My back doesn't hurt because of cancer. My back hurts because an inattentive driver did not show the due care one should when driving. I know saying this to most of my audience is like preaching to the choir. But if you take away one thing from my story, let it be this... Drive as if it matters! Put the distracting things down. Pay attention to the road and everything on it. Obey the steep limit. Stop at stop signs and red lights. Watch for walkers and cyclists and animals and children chasing stray balls into the road. The roads are shared resources. No one owns the road. A few seconds of inattention can alter your life and the life of others forever. So Drive as if it matters! And share this message with everyone you know!


Driving safely or unsafely is not a matter of luck. It is deliberate. Bad luck is doing everything right and still finding yourself in the path of danger due to a careless driver.

//off soapbox

Speaking of luck, both good and bad...

My parents were great fans of country music and a television show called Heehaw, so as a youngster I watched it a lot. There was this one musical skit that I remember where they sang this line, "If it wasn't for bad luck, I'd have no luck at all." Well, as many have pointed out, I've had a bit of bad luck lately, but I'll also point out that I've had more good luck than bad.

I got hit by a truck and ended up with a burst fracture of T11, and lots of other fractures in my back and ribs. Here's the good luck part... I was riding a fixed gear bike, so when I was hit, I was thrown. This saved my left leg from being crushed, like the left side of the bike was. I had awesome emergency responders. I was near a great trauma center. I was not paralyzed. The doctor who performed my initial surgery is a cyclist who rode down the same road a few hours earlier than I did. The good luck is the truck hit me, not him, because he could fix me. I couldn't fix him.

At the time I was in North Carolina, trying to transition my dad into assisted living. Assisted living didn't work out so well for him. The good luck was I had some awesome personal care givers, who took over looking after him at night just before the crash. They stayed at night until I moved him back to the retirement village where they then looked after him 24X7. Let me just say that good personal caregivers are so much better than any institutional care. I had a small team of care givers who knew my dad really well and served as advocates. He adored and trusted them. They adored him and earned his trust by taking such good care of him. When he ended up in the hospital in his final week, they continued to take care of him and act as his advocate, when I was away or hospital staff failed to do the right thing. I will never again make the mistake of thinking institutional care is better than individual care.

I stayed with my cousin and his family whenever I went to see my dad in NC. These folks are among the finest people I know. They rushed to the hospital and waited throughout my surgery. They chauffeured John around when he arrived the next day, and rearranged their house to accommodate me when I was released. You don't get to choose family, but sometimes you have the good luck to get great folks like Tommy, Bennie and Debbie as family.

My cousin Rose has also looked out for me, and provided all the family health history I needed when I got the cancer diagnosis. When my mom passed 6 years ago, I lost my resource into family history. I have cousins on my mom's side that I've never met. And others I haven't seen since I was small. Mom was great at big family events for telling me who was who, and who all these little ones belonged to. Sadly, like in many families, some relationships are strained by ancient slights that have not been forgiven. Fortunately for me, Rose doesn't hold grudges against anybody, and she has also taught me how to hug properly.

More good luck. My doctors are all wonderful. From my primary care, my two back surgeons, the shoulder surgeon, all the cancer doctors, PAs, nurses, technicians, radiologists and everyone else, have been gracious and compassionate and professional. I feel that I am in great hands. I feel so lucky that despite getting a rare type of breast cancer, that there is a cure. I feel so lucky that 20 years ago, a team of researchers really focused on finding a cure for this aggressive variety of breast cancer. I feel so lucky that this research was funded. Please help continue this kind of medical research by electing folks who believe in science and support and fund scientific and medical research. And for all who have asked how you can help me, please consider a donation to support breast cancer research. I have a fund-raising page here. I have a big goal. I want to fund a lot of research!

I also have the good luck of having found the most wonderful partner ever. Despite all the stress over the last two years, John has come through with flying colors. We've had ups and downs, like any couple. But I honestly couldn't have found a better life partner. John has been so encouraging about getting me out and keeping me active. He and the tandem let me do so much more than I can on my own, so I call them my EPO. The tandems were initially named Bond (because it's a 007) and Orange Crusher (because it's Orange and crushes trails), but I've been thinking of renaming them EPO-Red and EPO-Orange! Tandems are great equalizers for riders of different abilities. We had our first real date on the tandem. It's always been a great way to share adventures together, but riding a tandem with John has really been awesome for helping me to stay active and enjoy riding. I'm so lucky!

Photo courtesy of Cathy Rowell, the Dragon's Tail on the RSC Diverged Ride

Patria, our navigator, and Cathy, our sweep, on the RSC Diverged ride. Thank you ladies! Photo courtesy of Cathy Rowell.



John Prine has a song called "Dear Abby." In the story, various folks write into Dear Abby with their little complaints, and the her response is awesome...

Bewildered, bewildered you have no complaint,
You are what you are and you ain't what you ain't.
So listen up buster and listen up good,
Stop wishing for bad luck and knocking on wood.
Signed, Dear Abby

So there you have it. No complaints. I have way more good days than bad. I walk tons and ride my bike as much as I can. I have a dry roof over my head and a loving spouse. And Davros is losing the battle with modern medicine. Yay science!

Davros may slow me down, but he will not stop me from doing what I love. 
 
My strength and good attitude will help me have more good days than bad. But strength and positive attitude don't cure cancer. It takes modern medicine and the good luck of getting something for which researchers have found effective treatment.

Strong positive people still die. So please support the research community, so everyone gets a fighting chance.

My fundraising link again.  


10 comments:

  1. All the best to you and John in your new home and in the next chapter; wishing you soothing breezes on endless rewarding rides. Jim Duncan

    ReplyDelete
  2. Wishing you well Pamela -- I know you are OTB! I love your recap and you are such an inspiration. other cyclist Pam.

    ReplyDelete
  3. Wishing you the best. You are a real inspiration! Hope to see you at the D2R2 this year. I know you will ride from your new home.

    ReplyDelete
  4. Your strength in the midst of this is an inspiration. And you and John moving to the valley is making me a little jealous. I spent my first 30 years in the valley and I assure you, you are making a great choice.

    ReplyDelete
  5. Can the BCRF page take donations from outside the USA? I ask, as if it were the other way round e.g. Americans donating to a UK charity or research facility, there would be tax implications.

    ReplyDelete
    Replies
    1. Rebecca, I'm not sure about this, but I do believe there are research focused organizations in the UK that have also funded great inroads into finding cancer treatments. My request isn't so much to give to a charity I have selected and put my name on, but to support science and research in whatever way you can, whether that's politically, financially or personally for someone local going through it

      Delete
  6. Keep up the great attitude Pamela! Awesome photos! All the best from Virginia.

    Ed (and Karen) Hass
    2009 Co-Motion Speedster

    ReplyDelete
  7. Dear Pamela, I'm with you because you've shared. Thank you. Godspeed.

    ReplyDelete
  8. Very inspiring. Best of luck on your recovery.

    ReplyDelete
  9. Dear Pamela:
    I have enjoyed following your epic cycling adventures for a few years. I started thinking about you the other day while perusing Lovely Bicycle! I was wondering if you had fully recovered from your cycling accident but was shocked to read that life has thrown you yet another curveball. Eighteen years ago I was diagnosed with cancer of the tongue. I was in total shock, since I've never been a smoker. Fortunately, we caught it at Stage 1, so I didn't have to go through chemo or radiation, just surgery. My recovery was a piece of cake compared to many others. My sister in-law is battling Stage 4 melanoma. She is in a clinical trial for a new drug, and has been cancer free for two years, although the side effects are quite daunting. It appears that you are well on the way to recovery. Best of luck.
    Tom Howard

    ReplyDelete