Obligatory Leaning Tower of Pisa Cheesy Photo

So much for easing into the riding.

The first two days here in Lucca I’ve been out riding with friends for between 20 and 30 miles.

Today ended up being a 65 mile day.  I was planning to be doing between 30 and 40 miles a day this week … but I’m riding with a group of friends and it’s so easy to say, “Yes.  Let’s ride to the beach.” 

We started out from Lucca this morning and road to Pisa to see the duomo and the leaning tower of Pisa.  It was packed with tourists … the best part was the bike ride there – beautiful and just so gratifying to ride in to a place where others are more limited by parking or train schedules to come and go.

When we were done, we went back and decided to detour to the beach just south of Viareggio, which ended up more the doubling the mileage of the day.

Beautiful riding, and a beautiful day.  Castles and ruins of watchtowers on hilltops.  Wildflower-lined one-lane roads – buttercups and red poppies and Queen Anne’s lace.  Earth colored homes.  Broad fields of bright yellow blooming mustard.  Yellow iris blooming along riverbanks.

View from a hilltop castle in Nozzano on a rainy day ride

But a familiar problem for me … I have a hard time not pushing too hard physically if the reward is good enough.

One post-cancer challenge I have is lymphedema.   Part of my breast cancer treatment included removing the lymph nodes under my arm.  This has a long-term risk associated with this surgery of edema, or swelling, of the trunk and arm because the nodes that drain the lymph fluid (which is part of your immune system) have been removed.

I have lymphedema in my trunk.  It has not moved into my arm, though  my arm is at risk of developing it and becomes fatigued and sore easily.  Lymphedema is never cured, but it can become worse if it’s not managed carefully.  Exercise,  heat and infection all can trigger a flare-up, which is painful and prevents you from being active. My last flare-up in August of last year forced me to be sedentary for two months.

Doctors used to tell patients to do no exercise with the impacted arm and limit exercise overall.  More recent studies say that exercise helps.  But no doctor has much good advice for someone like me, who wants to ride a hundred miles in a day and ride in hot environments and otherwise resume an active lifestyle at the level I was capable of before cancer.

My oncologists and therapists have never told me I can’t ride or travel or do anything I tell them I want to do.  They just try to help me manage and work through barriers.  Because I think they must know it’s important for a cancer survivor to make and own their decisions about what they do with their life.  Because what doctor would want to have set limits on someone who could die before they heal enough to live?

Last fall I planned to join a cycle trip through Asia and had to cancel when two side effects – one to tamoxifen and the lymphedema flare-up – made me admit what I’m sure my doctors thought – but would not say.  It was too soon, and I wasn’t ready.

Lymphedema is the side effect of treatment I dreaded most …. and I had a lot of side effect risks from cancer treatment including other cancers and heart damage as a result of the drugs and procedures. 

Lymphedema is so frustrating because it undermines so much that is central to what I’ve built my identity around and accomplished for the past decade.  It humbles and can disfigure and it will never heal.  And it’s especially infuriating since it was all for naught … they didn’t find any cancer in the nodes under my arm pit (which is good), but I’m left with a lot of limitations as a result of the surgery that was not needed.

So doing the cycling and exercise I want to do requires trial and error self-treatment with the help of a lymphedema therapist and a lot of compression garments and pads that are all meant to prevent swelling and help the lymph find its way to the nodes that still exist.  There is amazingly little information out there to help patients with lymphedema … some of the most valuable information I’ve found has been on a website started by other women dealing with lymphedema who share information and from another cyclist who is coping with the same challenges.

Bottom line … now that women are surviving longer  – or just plain surviving breast cancer at all –  the side effects that impact quality of life are a much bigger issue.  It’s not enough any longer to just live and be grateful you aren’t dead.  Now breast cancer survivors want to live and … LIVE.  

The routine that has allowed me to increase physical activity is a painstaking combination of manual lymph drainage followed by wearing two compression garments on my torso and an elastic sleeve and gauntlet on my arm.  I have to regularly stop and rest the arm and stretch.  I build-up my exercise gradually.  I wear the compression for at least two hours after a ride.  Do another lymphatic massage.  And just constantly pay attention to my body and look for signs of trouble.

Getting fit post-cancer is not just about getting strong legs and lungs.  You have to build up the ability of your compromised lymph system to handle the extra demands you are putting your body.

Sixty-five miles today … that was the pre-cancer Leigh who said yes – let’s go for it.  The  post-cancer Leigh is holding her breath to make sure she didn’t cause a set-back.

The invisible physical boundaries are there to be tested and pushed and nudged.  And eventually I will get to a balance where I can  I can live a lifestyle that meets my needs to be happy and healthy.