10 Practical Tips for the First 10 Days of Cancer

Inside Tips and Tricks from a Cancer Jedi

Originally published on Rebelle Society
April 3rd, 2013
If you’re reading this you probably have cancer. Or perhaps you have a friend or loved one who’s been recently diagnosed. Maybe you have a colleague who’s fighting the fight. Just look at this scary map, chances are either you or someone in your life has been affected by this undiscriminating disease.

10 Tips for the First 10 Days of Cancer by Caitlin Marcoux

If you’re like me, you’ve lost some people to the big C and now you’re getting familiar on a first hand basis.

The early days of a new relationship with cancer are tough. You’re just getting to know each other, and the circumstances around your courtship happen at breakneck speed. The following list is by no means definitive; just a few things I’ve picked up along my newbie way.

Bring a friend: 10 Tips for the First 10 Days of Cancer1. Bring A Friend.

The unveiling of a new cancer diagnosis and the subsequent myriad of information that cascades over your unprepared brain is overwhelming. Like being submerged beneath a waterfall, it can be difficult to tune into any input other that the deafening sound of water rushing over your ears.

A good friend will help you shake the water out of your head, and come back to reality. They can also take got down important information, run interference when you need an emotional time-out, hold your hand or rub your back and be in charge of those all-too-easy to loose hospital garage parking tickets. 

When I traveled to the Avon Breast Cancer Center for my most recent “routine” mammogram follow-up, I didn’t really think that cancer patient was going to be added to my resume. After all, I’m a 36-year old, green juice drinking, vegetarian yoga teacher. I thought women under-40 who exercise religiously, don’t drink, smoke or eat meat, and use only bio-friendly household cleaners aren’t supposed to get breast cancer, right?

So I told my boyfriend to stay at home and brought my friend Megan with me. I thought I’d be told, just as I had the last three times in a row, to get another mammogram in 6 months and we’d be on our way to Newbury Street for an afternoon of shopping and be home in time for dinner. Man, was I wrong…

Thank God Megan was there, because when the NP came in and said “So, you have cancer.” I had to focus all my attention on my childhood friend’s familiar face to keep from disassociating my way into a panic attack. Of course it would have been just as reassuring to have my partner with me, but I have to admit there was something really empowering about having my dearest girlfriend with me. We’ve been best friends since we were five years old.

Cancer will try to break you down, but there’s no way it can’t break a sisterhood bond. We shared champagne and a hotel room that night, and my new diagnosis didn’t seem so insurmountable.

After that experience, I brought a friend to every treatment.

 

2. Don’t let anyone tell you not to look at your phone.

Smart phones are one of the greatest inventions of the digital age. These compact devices pack a powerful punch and become invaluable tools in your cancer toolbelt. Forget your Garmin? Just use the navigation system on your phone, and you call up directions to anywhere you need to go.

Use the search options to find hotels near your hospital, connect you to coffee shops, dry cleaners, laundry mats and places to eat, and with the new integration between Google Maps and Yelp you can immediately review any near-by establishment and find out if it’s really worth investigation.

Many of use already use our phones to find our way around, take photos, and listen to music, but have you ever actually used the audio recorder function? This function can be a newbie cancer survivor’s best friend. Just remember, full disclosure is an ethical imperative. Ask your Oncologist if it’s okay to record your next appointment, and stop worrying about on-the-spot note taking!

 

3. Travel smart and be prepared.

Travel smart: 10 Tips for the First 10 Days of Cancer

The right cancer gear is key: a great bag, a small cooler and a piece of rolling luggage are the perfect combo for your diagnostic visits or trips to chemotherapy.

If you have breast cancer like I do, say good-bye to your old school messenger bag. I’ve been carrying my mine around the country since graduate school, but if I wear it now it either presses on the tumor in my right breast, or drags across my newly implanted portocath on the left. There’s no winning. So it’s staying at home from now on.

Even if you don’t have breast cancer, messenger bags are best left for co-eds. Now that you have cancer (of any kind), consider yourself in the Doctoral Program of Life, and upgrade yourself to something a little more befitting of the Professor in Residence that you are. A combo of small brief case/attache bag or tote and a carry-on size roller bag are perfect for your infusion visits. I use the Patagonia Lightweight Travel Tote and the Patagonia MLC Wheelie.

In the first couple of weeks of your new diagnosis, you’ll want to be prepared for the random surprise over-night stay.

Your new wheelie should be packed with an emergency change of clothes, a couple of pairs of underwear (they take up so little space you might as well), extra socks, pajamas, and toiletries.

If you´re not traveling that far from your home to your hospital and getting all the way home is not an issue, it’s still a good idea to bring a toothbrush and toothpaste. My first couple of diagnostic visits to MGH (Massachusetts General Hospital) were 8+ hour long events. Freshening up my mouth would have felt great!

During chemo visits, bring a small cooler bag, like the PVC, phthalate and led-free bag by So Young Mother. Find freedom from down-beaten hospital food and pack your own uplifting lunch and snacks.

If you’re too tired or rushed to pack your own, call your favorite to-go spot and order a picnic lunch ahead of time. Every time I trek from Nantucket (my home) to Boston now I stop at The Green and pick up a green juice and organic picnic lunch. This way I can bring a favorite part of Nantucket with me, and feel good about my nutrition all at the same time.

 

4. Do drugs. Lots of them.

Build you team: 10 Tips for the First 10 Days of Cancer

Okay, so I’m not really suggesting you smoking a blunt. Certainly not one with tobacco. Duh. But I am encouraging you to call your Primary Care Physician for some pharmaceutical assistance, right away. Before you even need it.

I know that might be a controversial statement, especially in certain circles—but this is not the time to be a martyr, hero, or suffer through any unnecessary discomfort. You have cancer. It sucks enough already.

So there’s no point in being caught off guard, whether it’s because of a headache or an anxiety attack or an unexpected procedure. It’s better to be prepared. Take this from someone who’s been living an exemplary clean life these past few years, and rarely reaches for something stronger than an Advil.

Taking an Ativan before a full day of diagnostic procedures (bone scans, CTs with contrast, and MRIs) goes a long way towards making an unpleasant experience tolerable. It certainly helped me immensely during my first 10 days of cancer and I’m not ashamed to admit it.

Just a couple of days ago I arrived at MGH for my first chemo infusion, only to be surprised by a last minute lymph node biopsy. This is not a procedure performed under general anesthetic, or even that trippy “twilight” sleep they talk about.

If I had been just as prepared ahead of time as I had been the week before, I would have not only taken an Ativan for the anxiety (which I forgot in my aforementioned uncomfortable messenger bag) but I would have also taken some ibuprofen for the torment I was about to endure. I don’t care who tells you it’s a cake walk, a needle deep in your armpit is not pleasant.

A little prophylactic pharmaceutical comfort will go a long way towards easing your discomfort and building your metal fortitude.

 

5. Build Your Team.

Build you team: 10 Tips for the First 10 Days of Cancer by Caitlin Marcoux

If you’re under the impression that you can do this alone, give it up. No man or woman should be an island, especially when it comes to cancer.

You need a solid team.These teammates are the family and friends who are going to be fighting with you, on the front lines. Choose them wisely, and appoint them well.

Having an inner circle of cancer ninjas will give you strength. Appoint a Secretary, Treasurer, PR Manager, Insurance Guru, Domestic Goddess and Hand Holder. Your PR manager can help you send out a cancer newsletter to the people in your community you care about but don’t have enough time or energy to reach out to personally. Websites like CaringBridge.org  allow you to do the same thing while also becoming networking opportunities that protect your privacy more than traditional networking sites like Facebook.

Of course, the very most important person on your team is going to be your Secretary of Defense & Homeland Security; your primary healthcare advocate. This person is typically a spouse, partner or family member. They should be willing and able to take charge of your “situation” at a moment’s notice.

They possess a no-holds-barred imperative to speak up for you and your well-being. This person will not apologize for getting the job done by any means necessary. They should be able to give amazing hugs, find organic fruit in a hospital and make you laugh when an IV is being stuck into your arm.

Internet savvy friends can be charge of organizing food donations or childcare support online. One of my friends used SignUpGenius.com to schedule meals for me and my family and my other friends used Rally.com to start and handle financial donations. Your web advocates can drive traffic to your fundraising website via Facebook and Twitter, or help you set up a widget for your own site, or your employers site.

 

6. Get organized.

You will be inundated with pamphlets, brochures, prescription printouts, discharge papers, authorization forms, and information packets. Designing a way to organize all your cancer materials can be empowering and will streamline your mission: getting healthy fast.

Print up a list of important phone numbers, emergency contacts, volunteer babysitters, and even plant waters should you be unexpectedly away from home for more than a couple of days. Make a calendar with all your doctor’s appointments, tests, infusions and follow-ups. Color code things, use stickers, be creative. Chances are you’re going to carry this thing around with you for a while, so you might as well make it nice to look at.

Many hospitals have all kinds of resources for cancer patients but it’s not always easy to find them. The posters and flyers hanging on your oncologist’s cork board will have a way of blurring over while he’s discussing the best way to attack your invasive tumor. Information reaches critical mass, and you might find yourself blowing off other wellsprings of guidance.

An Oncology Social Worker can help you navigate your way around your assistance options. My hospital, Mass General, offers financial counseling, fertility counseling, the PACT (aka Parenting At a Challenging Time) program, Palliative Care, support groups, a Networking for Patients and Families program, Chaplaincy, and classes in Chemotherapy, Acupuncture, Yoga, Music, Nutrition, Art, and Caring for Yourself.

Additionally your social worker can give you information about discounted hotels and travel assistance. My social worker hooked me up with PALS, Patient AirLift Services, a volunteer organization which arranges free air transportation for individuals in need of medical diagnosis or other “compassionate needs.” Last week, PALS coordinated with Cape Air, who generously flew me from Nantucket to Boston for Chemotherapy.

 

7. Clarify your intentions.

Decide how personal you want to be about your illness before you start posting it on Facebook. If you’re in a relationship, discussing this with your partner beforehand is a good idea too. Be on the same page, it will spare you drama and frustration.

If you decide to go public with your diagnosis and story, Facebook can miraculously put you in touch with other people who share your challenges.

Just this week I’ve met three other women who have survived breast cancer, and without so much as talking to them on the phone, I now feel like we share a deep common bond. When my chemo side effects kick up the cancer sisterhood is only a PM away.

But try to avoid the pitfalls of wasting too much precious time on pointless threads or status update voyeurism. It will zap you, tax you, and may even create jealousy or resentment. You need your energy now more than ever, don’t fall down a social media rabbit hole. 

8. Practice Yoga.

Grace & Fire: Using Yoga and Mindfulness to Navigate Cancer

Some combination of meditation and asana, or just meditation or just asana will serve you well in your fight. If you approach your practice the same dedication you use for brushing your teeth, you can make your practice a vital part of your treatment and healing plan. Focusing on your breath will help you stay calm under stormy circumstances.

Sitting tall in meditation or getting grounded through your legs in standing poses will help you slow down and stay focused on the present moment. Twisting will help you detoxify. Opening your heart through backbends will help you use your illness to cultivate deeper compassion for yourself and others.

Not feeling well enough to get to class? If you have an iPad, tablet or laptop, get yourself to a virtual studio. There are some amazing teachers out there who offer their classes online. In fact, since the original publication of this article on RebellSociety.com in 2013, I have created just such an online class for you. The meditations and Yoga for Chemo practice on Grace & Fire: Using Yoga and Mindfulness to Navigate Cancer can be done in a chemo chair, with earphones on, and no one else will be the wiser. I am thrilled to be able to add this content, available with a small donation, to the offerings on CaitlinMarcoux.net

 

9. Create a sacred space.

10 Tips for the First 10 Days of Cancer by Caitlin Marcoux

Chemo rooms are nothing special. Creating a sacred space for yourself can soften the sterility of the hospital experience and can be as simple as bringing a few special personal items from home or as involved as setting up a mobile alter.

For my first infusion I brought a small statue of Ganesha (the Hindu god and Destroyer of Fear/Remover of Obstacles), a rose quartz heart (a gift from my teacher), a beautiful aromatherapy eye pillow, my journal, my Lotus Wei Quiet Mind Energy mist and a few cards from friends I had saved to open for strength on that day. The intentional placement of each item helped me to feel in control of my surroundings and participatory in the healing that was about to take place.

My bedroom altar is a much more involved version with many symbolic pieces I’ve collected both BC (Before Cancer) and AC (After Cancer) and it gives me positive energy, courage and joy.

For a beautiful audio meditation on making things sacred. Listen to Sarah Blondin of the Live Awake Project here.

 

10. Stay stylish.

10 Tips for the First 10 Days of Cancer by Caitlin Marcoux

This can be a tall order, but I’ve learned the hard way, that putting a little effort into your appearance can go miles towards helping you feel more confident and self-assured. During the diagnosis phase of cancer you may simply not have the chance to freshen up. But as you embark on treatment you have an opportunity to uplift yourself every time you get dressed.

On my first trip to Boston for chemo, I was possessed by the Easter Bunny. For some reason I thought it was a good idea to put on a pair of bright pink terry cloth Juice Couture track pants, a white cotton t-shirt, a pink om scarf and my Uggs.  As I was running out the door I traded in my full-length black down coat for my lighter jacket—which incidentally was bright green! I was so caught up in getting to the airport on time for my flight I didn’t even brush my hair. Not a good look.

Even though no one else at the hospital gave me a second glance, I felt disheveled and awkward. I vowed to myself that in the future I would dress elegantly and project outwardly the inner strength and confidence I was hoping to harvest inwardly.

Dress the way you would for an important date with destiny. Whether it’s your favorite pair of skinny jeans and some cowboy boots or a beautiful dress and smart blazer, wear something that makes you feel rich.

Even if you can’t be bothered to put on make-up you can always bring a small stick of mascara with you. And remember, If you pack your roller bag wisely, you can bring a cozier, more hospital bed friendly pair of sweatpants or jammies, should you need to change.

So far cancer is a wild ride with one hell of a learning curve. May we all stay open and receptive to the lessons is has to teach us.

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Over Here: Hysterectomy, Oophorectomy and Menopause

Caitlin Marcoux, Hysterectomy. Surgical Menopause. Yoga

Me in pre-op room, preparing for  my Hysterectomy. Mass General Hosptial, October 16th, 2016.

Well hello Menopause! Here I am.

I’m 39 years old. And I’ll never had to worry about getting pregnant again.

I don’t have to worry about unexpected spotting, a period catching me off guard and ruining my clothes, or getting in the way of sex. Unless I get lost, I’ll never have to walk down the feminine hygiene isle in the grocery store, feeling slightly embarrassed of my purchases. Nope, not any more.

These I suppose are the silver linings of cervical cancer and surgical menopause.

On October 16th, 2015 I went to Boston for the hundredth, thousandth, or millionth time in 3 years, for yet another surgery, and surrendered my entire reproductive system. Out came my cervix, my uterus, my fallopian tubes and my ovaries. As I’ve told my son ever time he asks for a brother or sister, Mommy has no more baby making parts and she is now in full blown menopause.

The surgery was fairly easy – amazing what can be done laparoscopically now with robotic arms, and left me only with 4 small scars on my abdomen and a tremendous amount of bloating. The hardest part was coming off the anesthesia, which as soon as I woke up, caused constant vomiting. Even after I was discharged from the hospital the next day, I threw up every single time I tried to eat for about 2 weeks. Eventually I the drugs moved out of my system, and after a couple weeks of Hell, I started to feel “normal” again.

Except for the fact that a huge part of my body was missing. 6 weeks of rest had been prescribed by my medial oncology team, including strict instructions not to ride my bike, or practice vigerous yoga, go up-side-down or do anything that would engage my core. Let me ask you this; what activity doesn’t engage your core?

So there I was from October 16th thru the end of November, not being able to navigate this huge change in my body without the tools I had used to get through breast cancer. Those of you who have followed my cancer diary might remember that even when I was getting chemo, I still managed to find a way to practice. It was, and still is, one the most important tools in my tool box. Anyway, I was stuck in my house (not allowed to drive) and feeling very alone, and very sad, and very angry. All this anger I had managed to push out of my mind so as to deal with chemo, and mastectomy and survival, came bubbling to the surface. The hysterectomy triggered all kinds of PTSD left over from breast cancer and I found myself in a very, very dark place. Between the vomiting, two trips to my local ER to get IV fluids, and hours and hours spent alone feeling toxically depressed, I actually began to have suicidal thoughts. Too ashamed to call my friends – who had all been through my battle with breast cancer with me, I wallowed in isolation.

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

~Asechulus

Laproscopic incision sites, 1 day post-op.

Tidal waves of grief washed over me as the realization that no matter what relationship I was in, I would never again be able to host another spirit inside my womb.

Despite the fact that my then partner had never wanted to have a child with me, part of me had secretly held out the hope that one day it might happen. Now that chance is nil. Looking back at on the situation now, I’ve realized that I have been angry at him, for quite some time, for allowing me to miss what was my small window of fertility. Obviously the onus is ultimately on me, since I chose to get involved with someone who’s mind had already been made up. At this point the resentment is no longer relevant as neither is the relationship.

At some point, in November, I think, I was in the bathroom, looking to replace toilet tissue on the wall. I dug around under the sink to find some, when I was hit hard by the sight of a full box of tampons. Hot tears exploded from my eyes. My body began to shake. Uncontrollable sobs jerked their way up my throat and out into empty house, ringing only in my own sensitive ear drums. The realization that I would never again need these supplies devastated me all at once. The box is still there. I haven’t been able to get ride of it.

It’s ironic, since most of my life I felt either ashamed of, inconvenienced by, or anxious about my period, and now I miss it. Looking back on the chronology of all these events, I wish I had made some time to acknowledge my last and final period. A few of my girlfriends and I had a small beautiful ceremony a few days before my surgery, in which we acknowledged the upcoming shift, but I was not present with myself the last time I actually menstruated. Like so many things we have until they are gone, I took it for granted.

Healing after hysterectomy. Caitlin Marcoux, Cancer Jedi, Yoga TeacherI was 10 and in middle school, the first time I got my period. Now, math has never been my strong suit, but I’m pretty sure that means that I’ve been in this flow for 29 years. Which means that the relationship I’ve had with my cycle is the longest one I’ve had. That means I’ve spent more time being a fertile women than not. I’ve always connected my sense of power and creativity with my fertility, and it comes as no surprise that the energetic area, or chakra, of the body that corresponds to the reproductive system, is Svadhisthana, the second chakra of our subtle body. Svadhistahana correlates to ones creative sexual fire and relates to our experience of creativity, sexuality, and the cultivation of prosperity and growth. This is a part of my body that saw some trauma in my early childhood. It is also a part of me that I have worked diligently to bring in to balance.

My hysterectomy has redefined my sense of self all over again.

It’s been a process, over these past few months, trying to figure out what that means. I’ve had to let the anger and grief move through me, both with guides and on my own. And I’ve turned to my teacher Shiva Rea, who’s rhythmic approach to vinyasa yoga honors the energetic systems of the body and celebrates the chakras in a non-liner or non-literal way. With her support, I’ve been able to accept these changes, and see that my womanhood is not only physical, but meta-physical and spiritual and so much more than a circuitry of tissue, blood and organs.

Women, we are not some combination of parts: of breasts and womb, but so much, much more. And my thoughts to anyone out there reading this, getting ready to set out on a journey such as mine, is to ACKNOWLEDGE how hard, and sad, and significant a loss it is. Don’t let anyone tell you that hysterectomy and Surgical Menopause is no big deal, because it really, truly is. To truly be with that experience while you’re in it. To feel it, not numb it. So that then you can move through it, and reclaim your innate femininity when the time is right.  Just like ever veteran is still a warrior even if he returns from war without an arm or a leg, every hysterectomy and breast cancer survivor can be a creative and powerful goddess.

Learn the alchemy

true human beings know,

The moment you accept

what troubles you’ve been given,

the door will open.

~Rumi

The loss of fertility is one thing, menopause before your time, is quite another.

It is a major, life changing event not to be played down. Sadly our culture doesn’t talk about menopause nearly as much as it should, but it is just a big of a hormonal and emotional change as puberty. Now I’m not suggesting that we allow women who are going to menopause to behave badly, but I am suggesting that we extend them a nurturing hand, be sensitive to their changing needs, and to acknowledge them. It has been my experience that when people are in flux such as this, or struggling with a private challenge, all the really want is to be seen. To be seen, listened to and maybe to be held. That was all I wanted.

Moving forward, I have found my fertility again in my yoga practice, in my work, and in the eyes of the little girls who take my Strong Girls Yoga classes with me on Sundays. I see my feminine prowess reflected back to me in their faces, and my fertility in their bodies every time the learn a new pose that makes them feel empowered. Then there is Griffin, by beautiful six-year old, for whom I feel so very very grateful. Tending to his needs and the development of his spirit is the ultimate expression of my femininity, the very epitome of motherhood.

The practice of gratitude is always fruitful. It may sound cliche but my girlfriend and co-teacher, Ieva and I have been making daily gratitude lists. It’s a beautiful and grounding way to being and end ones day. Life will continue to have its ups and downs, but we can grow that which we put our focus on – so write a list. What do you want to cultivate? Maybe it’s a deeper sense of femininity, maybe it’s abundance, or love. Whatever it is, look at the many ways, even if they’re small, that these things are already circulating around you. Be grateful.

Lastly, if you’re really missing your ovaries and uterus, you can order this panties… 😉

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Back on the Table

The Operating Room; and right in the middle, the table.

October 16th, 2015. Today is the day: I’m on my way to MGH to jump back on the table. This time for a full hysterectomy and oophorectomy.

Last weekend I rode 200 mile on my bike, knowing this operation was on the other side, and that rest and recovery would be about the extent of my physical activities for the next few weeks. The Tour de Pink was just as amazing, if not more so this year than last year. Despite my crash 42 miles into day one, I got back up on the bike and completed and full century (100 miles) the next day, and 55 miles the following day. My motivation was to take in each and ever moment, breathe as deeply as possible, and raise as hard and fast as I could.

This cycling swan song was akin to an advanced vinyasa practice and this upcoming surgery and recovery a long, long savasana.Uterus Art

I’m nervous.

The last time I was on the OR table I had both my breasts removed. I remember like it was yesterday, the cold hospital corridors, the revealingly, thin hospital Johnny, and the big clear plastic bags you’re asked to dump your personal belongings into. In the pre-op, you transition from person to patient and then patient to procedure. A nurse eventually comes into your holding area and starts an IV.

Eventually you’re moved from a wheelchair (even though your perfectly capable of walking) to a gurney, which immediately makes you want to simultaneously fall asleep and run away. Good byes to loved ones are said and then off you go. An anesthesiologist will introduce herself and start you on a sedative. You begin to feel disconnected from your body, your eyes start to float in their sockets, and it becomes increasingly difficult to hear the voices of the OR staff coaxing you to slide from the gurney over to the table.

The OR becomes a theater, and the doctors and nurses actors in a play.

You watch with distanced interest as the story unfolds and the air you breath sweetly thickens into darkness. There are a few final moments of awareness; someone puts an oxogen mask over your mouth and nose, a warm blanket over your chest and arms. You feel vulnerable, but cared for. You realize all of a sudden that YOU are the lead actor in the play, and unless it is Shakespeare, you will survive the final act.

Be In Love with Your Life

Every second counts.

Even these nervous seconds, minutes and hours leading up to this surgery. This challenge has brought some amazing people into my life, and brought me closer to others I never would have been friends with other wise. For that I am forever grateful. I have one Hell of a gynecological oncologist and the facility at MGH is the best in the world. It’s amazing to be in such good care.

Check-in is at 12 noon. Surgery is scheduled for 2pm. If all goes according to plan everything should be wrapped up by 4pm. I have to stay in the hospital overnight, and my mother and sister will be next door. We get to go home tomorrow. Quickly in, quickly out. And my mantra, as recommended by a dear friend and supporter will be “back on the bike”, “back on the bike”, “back on the bike.”

Many thanks for all the support, from all of you. And a big, grateful shout out to my friend Larisa Foreman and the Sue de Vries Cancer Foundation, for their kind donation – which will defray our travel costs to and from MGH this weekend.

Love,

Cait

Insomnia and Perseverance

Team Tasha Vinyasa

I wake up now, multiple times a night, usually soaked in sweat. Sometimes I wake at 1am, or 2am and go back to sleep, but typically I can’t. Or I don’t for hours and then I do; passing out just 30 to 45 minutes before my 5am alarm rings. I’m not complaining so much as stating the facts. I used to toss and turn, and roll around in bed, but now I know better. Now I get up and try to be productive. I try to think POSITIVE thoughts, and put them to good use. It doesn’t always work, but like yoga, it’s a practice.  This morning, I knew laying in bed any longer would do the opposite. The itchy, restless, burning sensations in my bones, the hyper-sensitiving and anxiety was impossible to quell.

I got up. It was the only option.positive thinking

I shifted to my side, and picked up my phone, mostly to see how many hour of sleep I had manage to collect,  when I noticed a steady stream of email notifications. “Congratulations” they said, “you have received another donation”…. In a rush of excitement I jumped out of bed and into my office.

I reached my $7,500 fundraising goal yesterday evening around 9pm, which in itself was hugely exciting, but over night – more donations came pouring in. $5, $25, $50, $100, and then – $1,000…

Amazing.

YSC Tour de Pink Fundraising progress

When I read the emails and checked the status of my fundraising page, tears welled up in my eyes. It’s been a tough week for me, personally, with the date of my hysterectomy and oophorectomy looming on the horizon, and I am just exhausted from the culmination of a SUP Yoga season fraught with equipment and scheduling issues, and parenting challenges, so it doesn’t take much to make me weepy these days. These tears, however, were tears of joy.
It makes me feel indescribably good to help others. To know that these donations for the Young Survivors Coalition, will help other young women, like myself, battling through the process of breast cancer treatment, makes me feel useful and connected to my cancer community, and gives me a deeper sense of purpose. The overnight donations have pushed me onto the fundraiser leaderboard, and much closer to the next fundraising goal of $10,000 then I ever thought I would get. I’m on such a roll now, I can’t help but set the bar even higher.

So I’m bumping my goal all the way up to $10k.

The purpose is two-fold: the money raised continues to be the primary objective, the campaign, however, is a personal project, and a much needed distraction. In three weeks, I am returning to MGH for more cancer-related surgery. I am anxious and scared. Because I am a rape and child abuse survivor, thinking about the bodily location of the surgery and the fact that I will be unconscious, on an O.R. table, with a team of strangers moving organs out my body through my vagina, makes my heart race.

I’m not sure, unless you have been victimized in the same way as I was, that it’s possible to understand the PTSD that is triggered by these thoughts of helplessness and exposure. I don’t know that you fear being sedated and strapped down to a table as much as I have, unless you too have been pinned down in the middle of the night, and had your legs spread apart.

#nevergiveup

rape, cancer, it doesn’t matter – we never give up.

I have tried to describe the psychological stressors, to my partner and friends that make this surgery so much scarier than my double mastectomy, but I’m not sure they relate, or understand. Some times it feels like I have been talking and writing about my personal struggles for so long now, that the significance of this particular chapter of my trauma, or the gravity of this operation, has diminished. Sometimes I get the feeling like their empathy has simply worn out. And you know what, I can’t really blame them. It’s been a long, painful narrative. I only hope it has also given others, who have gone through similar struggles, promise and encouragement t0 keep on keeping on. Because that’s what we do. We fall down, and we get back up.

So… back to fundraising it is.

Dear readers, if my cancer diaries have touched you, if you have been following my journey – the one that started in March 2013 – if I have inspired you in any way, please consider making a donation of any amount to my upcoming 200+ mile charity bike ride for young women with breast cancer. I need you. They need us. It is all one and the same.

Thank you for taking the time to hold some space for us cancer warriors and thank you for holding space for me.

~Caitlin

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 {My Cancer Story: The Beginning}

(Making the Breast Decision)

(Life After the Knife)

{How to Talk to Someone with Cancer)

(Let’s be Friends)

Warrior Won

N Magazine Feature

I am so grateful to N Magazine for this generous feature in the May 2015 edition. I feel very lucky to have had the opportunity to honor my fellow cancer warrior, Natasha Grosshans, in this very public, very special way. A big thank you to Katie Kaizer for all her beautiful photographs, and her always happy and very luminescent spirit.

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

the cancer club

Uterus by eReSaW

I thought that after they cut the port out of my chest, and the breast tissue out of my breasts, that it would be a long, long time before I had to go under the scalpel again. Hm…contrary to what I thought was the conclusion of my cancer story, this is not the case. As I’m starting to realize more and more, once you are part of the cancer club, you are a member for life.

Which is why after a suspicious pap, and a not-so-positive experience with a gynecologist on the Cape, I found back at the Cancer Center at Mass General Hospital a few days ago. If MGH’s Yawkee building is the cancer Club House, the 9th floor is like the Members Only area.  I can’t count how many times I’ve parked in the same parking garage, taken the same elevator up to the 9th floor, and hung a left to 9A. The only difference on Monday was that we turned right out of the elevator and went down the hall to 9E. I have to say, the breast cancer patients got the short end of the stick. The Gynecology Oncology waiting room is much nicer.

In any event, the reoccurring lesions on my cervix have given me reason to expand my oncology team. I now get to put my health in the hands of Dr. del Carmen, who’s got to be one of the coolest MDs I’ve ever met. And even though she put me through yet another uncomfortable exam, she made discussing the resection of yet another body part seem easy (well, easy-ish). She had clearly familiarized herself with my case, had already conferenced with both my breast surgeon and breast oncologist, and spoke to me with great care.

In about 5 more days we will have the pathology results we need to determine the type of hysterectomy I have to have and when I have to have it. If it looks like the unfriendly cells are quickly dividing, I will be looking at the inside of an O.R. this spring. If they are sluggish, I can put surgery off until the fall. Either way, I will soon be bidding my uterus adieu.

I’m not ready to write about the many feelings this prospect is stirring up, or the myriad of ways in which being a patient again is effecting my psyche. But I will. Eventually. For now, I’m trying my best to stay in the moment and recent win. Helen Keller said, “Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content”

Though it seems my members-only card has just been renewed, I realize now, it never really expired.

#nevergiveup

get off my chest

It’s been a rough couple of weeks. I’ve lost four friends to cancer within just the last 10 days.

Although we had three different types of breast cancer, Nora, Malaya and I were all diagnosed around the same time. I didn’t know them in my Life Before Cancer, but we found each other on FaceBook and through my blog, and they became some of the most important people in my personal battle.

Nora and I became friends in July of 2013. She reached out to me just before my mastectomy, and from that point on became a frequent visitor to my FB page. We dedicated our yoga practices to one another, sent each other care packages, and offered up support at the most critical times. Nora often reposted my cancer articles and in this way pointed a lot of other survivors in my direction. Nora and I had very similar treatment paths… and supported one another through out chemo, surgery and recovery. We both had cancers that were Her2Nu positive, and had to have infusion upon infusion of Herceptin: a drug that for most people does not present side effects, but for some reason caused us both significant discomfort. We comforted each other through social media and emails, and bonded over the similarities of our suffering and the lessons we were uncovering within.

See every challenge as an opportunity for personal growth.

May we see every challenge as an opportunity for personal growth.

In addition to similar chemotherapy regiments, Nora too had a mastectomy – and was to my knowledge considered NED (no evidence of disease) when they removed her tumor. But that is where our stories diverge. Nora had radiation. I did not. Then at some point this year, Nora’s cancer came back, and metastasized. Mine has not. I don’t know how, or why, nor can I come up with any scientific explanation as to why I remain and she is gone. It is sad. It is haunting. And it hurts.

However, knowing Nora, I’m sure she was just as graceful in dying as she was in living, and found meaning, faith and peace in the process of letting go. Nora was a kind and beautiful woman. A mother, a grandmother, and a fellow yogini,  Nora was always positive – no matter what. The graphic above was the last profile picture she chose to put up on her FaceBook page. It really says it all.

Angel, Nora Boczar

Angel, Nora Boczar

 

Malaya and I too became friends through FaceBook. When we connected, she was already Stage IV. Having only Stage II myself, I initially felt self-conscious talking with her about my prognosis and treatment plan. While I was a candidate for certain proven-to-be-effective drugs, Malaya’s illness had already entered into uncharted territory. While I had a flow chart with scheduled infusions, varying dosages of chemo proven to work on different aspects of my disease, a surgical date and and discharge date, Malaya was being juggled from hospital to hospital, clinical trial to clinical trial, and for her, there was no end in sight.

All that being said, Malaya’s compassion knew no bounds. She and I would speak for hours on the phone about all kinds of things only sisters in the trenches could understand… When I couldn’t relate to my non-diseased friends, Malaya would make time to chat about the challenges of being a young woman with a life-threatening illness. She told me to get over my comparisons, and reminded me that pain is pain. I eventually conceded that she was right and I learned to have compassion for my own scary ordeal. Even though Malaya would talk about the shitty, cruelty of cancer for as long as I wanted, she never seemed to feel bad for herself.  She continued to live her life to the fullest. A former Roller Derby Girl, Malaya bravely moved forward. She married a childhood sweetheart, and started a fiery blog called Hip Checking Cancer, and to me she was a superhuman example of how to carry ones self in difficult times. (to illustrate, she was diagnosed during Hurricane Sandy, in a hospital that was quickly going under water, even then she seemed to captain the ship). To me she navigated her illness with the perfect balance of truthfulness, tenacity and grace. In August she wrote “I’m sick of this daily battle. I’m sick of being a warrior. I want a cure. I want a future. I want to live. I want a damn glass of sangria. ” She’s raw, pissy, honest, and yet she’s still funny. How many of us can relate.

Malaya Kelly aka Salmour Doll

Bad Ass: Malaya Kelly aka Salmour Doll

Malaya’s 7th treatment plan began to fail in August. I didn’t know, because I hadn’t checked in with her in quite some time. Focused mostly on myself; moving my family, starting my new business and being a mom, I was also a shitty friend. So like Nora’s, Malaya’s passing on October 18th hit me like a direct blow to the heart. I wish I had checked in. I wish I had had the chance to speak with her on the phone one more time. I wish I could have said good-bye.

Three days ago, on October 25th, I woke up to more heartbreaking news. A woman I recently met on the  Young Women’s Survival Coalition‘s Tour de Pink charity bike ride named Kara Guzzetti had passed away the night before.

Kara and her charismatic boyfriend Chris were two of the first people I met on the 200+ mile YSCTDP. I remember being extremely impressed by the way she brave showed off her bald head, and overwhelmed by how fiercely up front she was about her Stage IV terminal diagnosis. Despite a body that had been through hell, she got up every morning and rode as many miles of the grueling trip as she could. Kara had big smiles and endless amounts of good cheer. She inspired everyone around her. It was just a little more than a month after that amazing ride that she passed. Though I barely knew her, I will forever be inspired by Kara.

Kara Guzzetti, riding at the 2014 Tour de Pink, and an inspiration to all

Kara Guzzetti, riding at the 2014 Tour de Pink, and an inspiration to all.

I couldn’t help but think of all three of these inspiring ladies, when yesterday I attended my 2nd funeral in 2 weeks. As I sat listening to other members of our close and loving Nantucket community eulogize our friend Scotty, I felt like all these spirits were there together. I felt like perhaps they were all at peace, all pain-free, each of them the better off in a way for having faced cancer and having lived so fully in their dying to have inspired so many.

Scotty passed away after a 2+ year long battle with kapok’s sarcoma of the pancreas. She was my personal trainer for a time, but someone who shared the space where I have worked for the last 6 years of my life. There were many other ways in which Scotty touched my life, but most profoundly she helped guide me into a place of deep gratitude for my illness (which is a tall fucking order), and for everything yet still flourishing in my life. I didn’t know I had breast cancer at the time of Scotty’s diagnosis, but I had it. When three months after the Yogathon we put together for Scotty at the Yoga Room, I got my own potentially terminal diagnosis, it was Scotty whom I immediately wanted to see.

Scotty and I started going to the cancer support group offered by Palliative & Support Care of Nantucket, and I looked forward to seeing her there. She was always so eloquent, not only about the things she felt grateful for but about that things that were causing her pain. I think it was her truthfulness that drew me in the most. That and the resolve she had about facing death straight on. It was as clear as day -you could see it in her eyes. Being around her made me feel braver.

A few times I ran into Scotty at the Green, just randomly. And all we’d do was hug. We didn’t even need to talk. Some times she’d start crying first, some times I would. It’s like that with cancer patients – words need not be spoken.

Me; 2 1/2 months into chemotherapy. Scotty bravely forging ahead without treatment.

Me; 2 1/2 months into chemotherapy. Scotty bravely forging ahead without treatment early 2013.

It’s a very strange thing: to have outlived a large part of my cancer community. But it stands to reason, that when you surround yourself with people who have long-term and terminal illnesses, death on a larger than normal scale is to be expected. Yet as sad as cancer can make and has made me feel (especially this week), the prevailing feeling I take away from all these experiences is one of great, great privilege. In my almost 38 years on this planet, it has been cancer that has brought the most inspiring people into my life. To have known so many, many inspiring people in such a short amount of time is an honor.

Nora was right, “every experience, no matter how how bad it seems hold within it a blessing of some kind.” All we have to do is find it.

#nevergiveup

My Tour de Pink

I’m a little nervous, but…I’ve slayed much bigger dragons in the last 2 years. Even so, in just a few days I’ll be on yet another slightly pause-worthy, solo adventure. And I get to check another first off my list. This time that incorporates a few different things: my very first time riding my road bike off the island of Nantucket, my first charity ride, my first time riding in a group of 100+, my first time riding with total strangers and my first time doing more than 50 miles in a day.

I’m amped.

I’m ready.

and I’m HEALTHY!

As many of you know, this time last year I was in the fight of my life, on bed rest and healing from a radical double mastectomy. This summer, I am thrilled to report, life is looking very different. Having recently wrapped up 16 months of breast cancer treatment in July, I am no longer a patient, but a Breast Cancer SURVIVOR. On September 19th -20th I am riding in my first multi-day charity bike event: The YSC Tour de Pink, a 200 mile bike ride for young women with breast cancer. The YSC, Young Survivor’s Coalition* offers resources, connections and outreach so women feel supported, empowered and hopeful. 

Considering the year I’ve had, and my newbie status as a cyclist, I anticipate this ride is going to be a challenge, but I know that the strength I have cultivated during my battle, the strength you, my community, have given me to beat back this disease will get me to the finish line. With the motto “Ride. Support. Inspire”, YSC Tour de Pink is much more than just a ride, it’s a chance to honor survivors, raise awareness and support important programs for young women with breast cancer.

Tour de Pink

I signed up to ride the Tour de Pink only 6 weeks ago- and in that short amount of time my friends and family, and even people who don’t even know me have raised $3,888.00 – an overwhelming show of support considering how much fundraising is done here on Nantucket during the summer months, and how many deserving causes there are to donate to. I feel so blessed and yet again, so grateful to live here, to have the community we have and to be a part of something so important with the help of those around me.

I am dedicating my YSC ride to my friend, breast cancer mentor and long time Nantucketer, Claudia Kronenberg Douty, who also had triple positive invasive breast cancer and passed away all too soon, earlier this year.

I would like to thank the following people who made donations to my Tour de Pink:

  • John Osborne & Family
  • Emily Molden
  • Chris Collins
  • Burr Tupper
  • Sarah Montgomery
  • Kimberly and Marina Cassano
  • Terry Keible
  • Julie Hilberg Hunt
  • Jennifer Kaplan
  • Kathy Lipschuts
  • Burton Balkind
  • Elisa Allen
  • my Mom & Dad
  • Caroline Furgeson
  • Ani Kasten
  • Gretchen Cooney
  • Victoria Macomber
  • Jillian Fraker
  • Kim Reilly
  • Barbara Rosen
  • Georgia Raysman
  • Audrey Stery
  • Larisa Foreman
  • Melissa Murphy & Family
  • Tracy Cullinane
  • Alison Gorham
  • John Hunt & Palma Puzzoli
  • Lisa LaFrance
  • Jake & Alisa Allegrini
  • Juan Uribe
  • Mark Loader
  • Patrick Topham
  • Laura Snyder
  • Melissa Swim
  • Georgina Sharman
  • Christen & Andrew deLa Rochelle
  • Ann Marie Hunter
  • Lisa Botticelli
  • and of course the anonymous donors… I know who some of you are 😉

I just picked up my bike from Young’s, where they kindly squeezed me in for a last minute tune-up, and I’m in the middle of packing my bike bag. I’ve gone over my check list a dozen times already, and I’ll go over it a few more times before I go to bed. My excitement is visible in the flush on my cheeks. Although the ride itself doesn’t commence for a few more days, I leave the island tomorrow and head off to Boston. On Thursday morning I’ll make the 7 hour trek from Boston to my friend’s house in PA and pick up my Tour de Pink packet in Philadelphia on the way. We hit the road 9am on Friday morning…

Follow me and my ride:

Live. Love. Ride.

~Caitlin

 

Tour de Pink

#nevergiveup

 

*The YSC is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful. With an interactive website and almost 30 affiliates across the United States, it is YSC’s goal that no young woman should be left to fight breast cancer alone.

 

Why I ride and how surviving cancer is easier on a bike

I love cycling

“Cyclers see considerable more of this beautiful world than any other class of citizens. A good bicycle, well applied, will cure most ills this flesh is heir to.” ~ Dr. K. K. Doty

Neophyte. Rookie. Novice. Beginner. Green Horn. These are all terms you could use to describe me and my current place in the cycling community. But despite the fact that I am the newcomer with the shaky handlebars, and inconsistent pedal stroke, I am having the time of my life. In fact, I have never felt so alive.

I’m sure that it a lot to do with recently overcoming invasive breast cancer and wrapping up 16 months of chemotherapy. I literally have a new lease on life and I’m so amped to live this one to the fullest.

For the record, I have no problem admitting I have no real place keeping company with the stallion-like riders I’ve been chasing. But so far anyway, my ego hasn’t gotten the better of me, and Im well satisfied with my view from the rear. Every moment I spend in the saddle is a moment I’m not in a hospital. Every time I feel my heart rate rise I smile knowing it’s because I am physically exerting myself and not because I’m having a chemo-induced panic attack. I don’t care if I ever win a bike race, because I’ve already beat the biggest competition I’ll ever have to face. Sure it would be nice, but right now I’m just happy to be here.

So many things change after a cancer diagnosis. But one of the things you realize right away, is that your life will forever be divided into two distinct chapters: Life Before Cancer and Life After Cancer. I’ve heard over and over again that many cancer survivors go onto change their lives radically when they’ve overcome the disease. Some survivors totally rework their priorities; quit day jobs to spend all their time with their families, jump out of planes, climb crazy mountains, leave their relationships, get divorced, or move to a foreign country.

Now I was pretty happy with my life before I got diagnosed, so I’m not looking to make any radical changes – BUT I will say this, the fear that used to hold me back from doing things that intimidated me is gone. Having looked at death in the face and come out the other side, there’s not a lot I’m afraid of anymore. I have however found myself wanting to make up for lost time, to push my body harder than ever before, to test my limits, to live bigger, louder, and stronger. I have a voracious appetite and throw myself into things with a gusto I think I lacked in the time before cancer. One of the ways I’ve been doing this has been on my bike, 4-6 mornings a week, since the beginning of June.

I’ve caught the cycling bug the way I see some of my students catch the yoga bug… I think about it constantly. I read about riding. I dream about riding. I feel agitated and incomplete on my rest days. Yoga and I have been married a long time. We will continue our mostly monogamous and steadfast relationship until death do us part. However, cycling has showed up this year out of no where, and all of a sudden I have a most unexpected and tantalizing lover on the side. Admittedly, I’m a little obsessed, as one is when a new passion is ignited. But if you have to be obsessed about something, I figure this is a pretty healthy obsession.

Nantucket Velo

The back story to the cycling piece is this: I lived in Chicago from 2002 until 2007. During that time I was madly in love with a man whom I would ultimately marry just 8 weeks before he would die of a rare and shockingly brutal kind of lung cancer. Ironically during our time together Aaron constantly pressured me to get on a road bike. He loved it and rode all over Chicago on a wickedly fast Bianchi. Even the thought of riding though the city streets on a tiny, delicate looking frame with spaghetti thin wheels terrified me. And I refused.  He eventually bought be a Marin Muirwoods hybrid bike, which was basically a road bike but had a steal mountain-bike like frame and wheels that were slightly wider than those on his. It was a manipulative gift, but a beautiful one, and over time, I caved to the guilt he laid on in heavy doses.

It was right around the time I finally started tentatively riding the bike, that we found out Aaron had terminal cancer. He was gone just 2 months later. Everything after that got really blurry for me. I was 27, I was devastated. I was a widow. I put the bike down and didn’t ride it again until I moved home to Nantucket in 2007, and even then just looking at the Marin brought up such pain and loss, I barely rode it.

In another ironic twist, I got hooked on spinning just a few months before my own cancer diagnosis. I’d often take the 5:30am spin class at the NC+F studio, and then head over to the Green for a post-workout coffee. It was Jason Bridges, who started suggesting I take all my spinning energy and put it on the road. No way, I’d think to myself. That shit is scary.

But wouldn’t you know that in December 2012, just 3 months before my life would be turned up-side-down by a needle biopsy, a beautiful titanium LeMond road bike arrived. A gift from my partner – who knew how much I was enjoying spinning, and just couldn’t help but pick up where Aaron had left off.

The gift simultaneously thrilled and freaked me out. Luckily for me, I wouldn’t have to test drive my new steed for quite a while. My needle biopsy revealed an aggressive triple-positive ductal carcinoma, and subsequent MRIs showed that the cancer had spread throughout 3/4th of my entire right breast. My breast surgeon was saying things like “we’ll do everything we can to save your life”… I had an oncologist asking me things like did I want to freeze my eggs in case we had to remove my ovaries and uterus. Someone stuck a huge fucking needle full of radioactive dye into both my breasts and told me it would feel like a bee sting (clearly she had never had the procedure herself). The bike starred tauntingly at me from our enclosed porch while I threw up into a plastic bowl and kept swapping out ice packs on my itchy, hot, bald scalp.

I made a vow to myself, that if I beat cancer, I would get on that bike and RIDE it. I’m not sure if I was bargaining with God or with Aaron, but I also vowed that if I came out the other side, I would even race it. So in November of 2013, when I had gotten over the worst part of my treatment (Taxol, A/C and the double mastectomy) I realized that I was going to have to make good on my promises.

“The best rides are the ones where you bite off much more than you can chew, and live through it.” ~ Doug Bradbury

My partner and I had thrown around the idea of forming an Iron Teams Relay team, an annual race here on Nantucket that has a number of different legs, including a bike leg, but it had seemed like theoretical banter at the time. Once it started to look more like a reality, I wasn’t sure what was more frightening, cancer or riding in the Iron Teams.

I took the LeMond out for the first time on the 15th of November. I had no hair, no energy, certainly no cycling apparel, and felt like a big bald idiot as I awkwardly tried shifting up and down on the completely foreign apparatus. It felt very unstable, and scary to be clipped into something that moved in a forward trajectory, but part of me loved it right away.

November 15th, 2013: First time on a road bike.

A little post ride yoga selfie. November 15th, 2013: First time on a road bike.

Somehow between endless infusions and visits to Boston to see my oncologist, the winter flew by, and with spring arrived cycling season. My fear of road biking was dissipated by a couple of dear friends who took the time to explain the rules of the road, and in May took me out a few times at a pace I could handle. After a year and half of treatments, my energy level was at an all time low. My lungs were sluggish. My legs felt like they were moving through quick sand and my heart rate skyrocketed almost as soon as I left my house. The first time I did the Polpis-Sconset Loop with triathlete, friend and yoga student, Eddie Roberts, we went around 12mph.

Paint probably dries faster.

Even so, it didn’t matter. I was hooked. While riding I felt tingly from head to toe. Any speed I went was still faster than no speed at all, and faster still then the snails pace which I had averaged walking anxiously through the hallways of the Mass General Cancer ward. Riding made my entire body buzz. Riding made me feel alive in ways I’m not sure I’ve ever felt. And most importantly, it made returning to Life After Cancer seem like a tangible reality.

“Ride as much or as little, or as long or as short as you feel. But ride.” ~ Eddy Merckx

By June, I started riding 2-3 times a week: the most cardiovascular training I’ve ever done in my entire life. As far as training goes, it’s not much. But I had to start building a base if I was going to ride the bike leg of the Iron Teams Relay as promised. The goal was not win, the goal was simply to finish. I wanted my 4 year old son Griffin to see me speed down the road on my black and yellow LeMond.  I wanted him to see that the days of watching his mommy lay on the couch, too weak to play were over.

 

Iron Teams Relay: June 25th, 2014

Proudly showing off my “Kick Cancer” kit at the Iron Teams Relay: June 25th, 2014

Iron Teams Relay (photo by Shawn Monaco)

With Griffin at the end of the bike leg. Photo by Shawn Monaco

By the 16th of July, which was my last of 31 chemotherapy infusions, I had started to ride with the 6am Nantucket Velo group fairly regularly. I didn’t and still don’t often hold onto the group for long, but was happy just to be welcomed into the fold. From time to time I would be offered technical tips, or motivational aphorisms. New friends started pushing me to hold on through the “hills” of Tom Nevers, or get on somebody’s back wheel to practice drafting. I watched in absolute AMAZEMENT as my speed average increased from 12mph in May to 19mph in July.

Now some people have told me that stats and data aren’t important, and that cycling is more about how your body feels than the speed you ride or the miles you put in. But cancer patients are obsessed with numbers: blood counts and temperatures dictate whether or not an infusion can be administered. The number of days are counted  before we have to go back into the hospital and start the hell that is chemotherapy all over again. We count the number of days we throw up and the number of times we have to go in for intravenous hydration. I even counted the number of episodes I could watch of Scandal in a row before nodding out while doped up on morphine. So for me keeping track of my speed and milage has been something that I get great pleasure from. Every piece of data reminds me how alive I am instead of how sick I am (or was). Of course I pay attention to how my body feels, that’s an integral part of being a yogi, but I don’t think anything’s wrong with tracking progress. In fact, as a cancer survivor, I feel liberated by these kinds of numbers not confined by them.

On July 24th I competed in the Nantucket Hero Triathlon, on a team with Simon Shurey, who’s mother too has been battling breast cancer. We named our team FCTIAH aka Fuck Cancer There is Always Hope. I’m not sure I’ve ever been so nervous in all my life, but it was awesome. It was so much fun being on a team with Simon, who has always been so encouraging and positive whenever I see him, and my friend Laura, who had been on my Iron Teams Relay team.

In no small part because of this blog, many people who were either competing or spectating knew my cancer story and it felt like hundreds of people were rooting for me. Race Director, Jamie Raney, was over the top supportive of me and my decision to participate, and even publicly acknowledged my fight during the pre-event meeting. The race was on a Sunday. I had completed my last chemo on that Wednesday, just 4 days earlier. On that 31st and final infusion I felt like I had finally crossed the finish line of a very, very long and traumatic race. As I sprinted in at the end of Triathlon bike leg, the victory of crossing that finish line truly settled in.

 

 

Team FCTIAH at the Nantucket Hero Tri

Team FCTIAH at the Nantucket Hero Tri

Tomorrow I am racing in the Tour de Loop, a local Nantucket bike race (my first ever) that’s been around for a number of years. I have no illusions of grander or expectations to ride any faster than my personal best. There are a few riders I know I can match cadence with, and I’ll be happy for their companionship. Yes, I am the newbie. I am the one trying her damnedest to conquer her spazzy front wheel. I am the one who, just this morning, gripped her brakes dangerously when  assaulted by a piece of road kill and incited the ire of one of the velo’s senior riders (so sorry). But I’m also the happiest person on the road. That I know for sure.

Thank you Edward Roberts, Emily Molden, Jake Allegrini, Jason Bridges, Mike Allen, Simon Shurey, Mary Ellen Pender, Criss Troast, Jeff Shapiro, Michael Alpert, Seth Hatch, Shawn Monaco and the rest of the men and women who’ve allowed me to tag along this summer.

#nevergiveup

 

inspirational bike quotes

One Year Cancerversary

(photo: Larisa Forman)

Healing Breast Cancer (photo: Larisa Forman)

Dates are important to people with long-term illness: we celebrate them with a vengeance. We celebrate everything actually – because every moment we’re still here is a fucking party. Harrowing and victorious moments alike are crystalized into milestones, because each one reminds us that we’re not dead yet. Pain and pleasure are like sugar and salt – two sides of the same living and breathing, sensuous world.

We remember the first time we told someone we had cancer with the same clarity we remember the first time we told someone we’d been accepted into college. We remember the first time we made love as a cancer patient the same way we remember loosing our virginity. We remember the first chemotherapy infusion and the first time we threw up. We remember the first time our white blood cell count dropped dangerously low and we were declared neutropenic. But in addition to all the bumps in the road, we remember and celebrate all the hurdles we’ve cleared, and every single finish line we’ve crossed: first round of chemo completed: check. Second round of chemo completed: check. Tumor removed: check. Adjunctive chemotherapy completed: check. First anniversary of diagnosis: check. And then the big ones: The one year anniversary of the cancer’s removal, and the even bigger one: the second year anniversary of the cancer’s removal, and then the biggest one: the 5 year anniversary of the cancer’s removal.

Maybe it seems like a lot of hoopla. Is that really a word? Maybe it seems ceremonial overkill. But if you’re part of this tribe, if you’ve ever taken a trip to Cancerland, you know how important these annual markers are.

Today is the one year anniversary of my mastectomy; my cancer’s removal. That means that for one year I have been N.E.D. (No Evidence of Disease). If I can make it to July 25th, 2015 without a reoccurrence, I will be 80% likely to beat this damn disease entirely. 80%. That’s a pretty big deal. So I know we just made a big deal about how I finally, after 16 months and 31 infusions, I finished chemotherapy – but to me, this is an even bigger deal. I don’t need a party, or a big display of public support… I just need to share this moment with you – and with my fellow breast cancer sisters, and celebrate in my own little way.

This morning I went for a ride with our Nantucket cycling group. It was my 4th ride this week. And even though I know they slowed down significantly for me, I hung on through the whole ride, and averaged a personal best speed. That to me is the party. The ongoing celebration of life. The fight. The victory. The triumph.

This time last year I was on an operating table at Mass General Hospital. Dr. Michelle Specht was removing my tumor, the invasive cancer that covered 3/4th of my breast, and taking the other one off proactively. My plastic surgeon was about to surgically place two silicon implants into my chest. I hand needles in my arms and tubes draining out my sides.  I wasn’t sure when I woke up if I would still have my own nipples. We didn’t know how many of my lymph nodes would be cancerous. We didn’t really know how well I had respond to chemotherapy. We didn’t know that a year later, I would be riding with a pack of highly driven cyclists. We didn’t know that I would win.

Tell me, what is it you plan to do
with your one wild and precious life?

~Mary Oliver.