I am a 45-year-old mother of three children ages 19, 17, and 12. I have late metastatic cervical cancer that is considered untreatable. I have worked in many varied fields including as a Real State Broker, a Doula and Apprentice Midwife, a Whitewater Raft Guide, Kayak & Canoe guide, Ski Lift-operator, and most recently an EMT & Paramedic student.
Guiding on the Taylor for 3 Rivers
I have a love of travel and exotic places. At 19 I traveled alone to India to meet Mother Theresa and work in her Calcutta Orphanage. Three years later, while in Nursing School, I again traveled solo to Pakistan where I volunteered at an Afghan Women Hospital in Peshawar delivering babies and doing exams.
My ardor for mountains has taken me to Patagonia and many of the highest Himalayan peaks from Kanchenjunga in India, Everest in Tibet & K2 in Pakistan. I recently returned from a trip to Morocco with my youngest daughter. I am passionate about water/snow sports though I do not consider myself a natural athlete. Each new sport has been a challenge for me.
I just learned to Paddleboard in San Clemente, CA in August of 2011. I grew up in Washington DC, have lived most of my life in Albuquerque NM, but feel fortunate to have lived in India, Tucson, France and most recently Crested Butte, Colorado my favorite town on the planet.
Why do you want to do this?
It was August of 2011 when, two months after being told there was no longer any treatment available for my cervical cancer, I came up with the idea of paddleboarding the Ganga. It came to me like a little secret whispered in my ear. It’s an original synthesis of Pilgrimage, athletic challenge, and opportunity to raise awareness about the cancer I have which kills 250,000 women a year worldwide. So it’s not so much as a want but something I feel I must do.
How is this Expedition going to work?
I spend most my days trying to figure that out! The Expedition has gone through several metamorphoses, but in the end it remains a Solo trip that starts in the clear Himalayan rapids of Rishikesh and ends 700 miles later in the wide calm waters of the ancient sacred city, Varanasi.
I will be paddling a 12 ½ foot custom inflatable paddleboard by ULI. When I get tired I can occasionally sit on a foam yoga block then use a short paddle, also there will be extra tow rings put on my board so I can be towed while I briefly rest or stretch.
Nat Stone, the Cameraman, Navigator, Waterman will be accompanying me rowing a custom rigged sculling canoe. Nat has rowed, paddled, or sculled over 10,000 miles solo from the Mississippi to the Mekong in Laos. We hope to make 25 miles a day paddling in two 4 hour sessions. We are carrying our own food and supplies and will camp most nights along the banks of the Ganga. Every 3 or 4 days we anticipate meeting up with our support crew traveling by RV.
Why the name Starry Ganga?
The story of the Goddess Ganga is very complicated, but the part that caught my attention is when The Goddess Ganga who lived in the Milky Way is brought to Earth through Shiva's hair.
What do you expect to come out of this?
First being a lifelong Buddhist facing my own certain death in the near future, I want time to meditate quietly for hours a day while floating/paddling on the most sacred river in the world. Second I want to raise $100,000 for the Global Initiative Against HPV/Cervical Cancer, an American non-profit working in India. Finally I want to inspire others to be fearless. Do your own dreams, reach further than you thought possible, help more than you imagine you are able.
How are you going to make time for the trip and provide the funds?
This is my main life's purpose at this time. I was awarded a generous private grant to make this happen.
How do you see yourself contributing to the goals of this expedition?
“Always look on the bright side of Life,” the humorous song by Monte Python, often runs in my head during difficult times. So I think my strength lies in seeing the bright side of any situation. This along with adaptability will be the key to success. Traveling in India is often fraught with unexpected difficulties but these are compensated 10-fold by the many small acts of kindness and generosity commonly shown to travelers in the tradition of Indian Hospitality.
Do you have any personal experience with cancer or cervical cancer? When was your last Pap test?
In the US 4 out of 5 Cervical Cancer Deaths occur in women who haven’t had a Pap Smear in more than 5 years (Dr Shobha Krishnan, The HPV Vaccine Controversy: Sex, Cancer, God and Politics).
I went 10 years without getting a Pap.
In fall of 2008 I had a Pap test in Gunnison, CO after many years of symptoms I ignored or did not recognize as signs of cancer. Unfortunately I did not get the results before I moved back to NM the following week. The following summer of 2009, I painlessly hemorrhaged. It was only then that I knew something was very wrong. When I spoke to the clinic in Gunnison they said my Pap had been abnormal, they had been trying to track me down and I should immediately go to a Women’s Clinic for follow up. Deep inside I knew I had cancer. Acting equally from both fear and strength I took the somewhat radical step of shaving off all my long red hair. In hindsight I guess I knew there would be a lot of challenges ahead and I wanted to try to stay in control.
In the fall of 2009, following several rounds of increasingly invasive procedures, I was finally diagnosed with stage 1B2 Cervical Cancer. I was advised to have an immediate radical hysterectomy, during the surgery local lymph involvement was noted and removed. I started a 6 week course of daily Radiation & Chemotherapy as soon as I recovered from surgery.
That winter I had one 3 day weekend off of radiation treatments and drove to Crested Butte with my 14 year old son – he learned to drive on the long stretches of empty highway so I could sleep off the fatigue and nausea from treatments. The following day it was perfect powder day – I snowboarded my favorite black diamond bump runs pounding out the moguls with a small posse of good friends smiling to see me ride. Every turn was a thrill, magnificent sparkling crystals of powder knee deep. Occasionally I would stop to catch my breath, marvel at my beloved circle of snowcapped mountains surrounding me, and swallow the vomit that wanted to come out. At lunch I laid on the bed at my friend’s slopeside condo closed my eyes and unintentionally slept the rest of the day. That was the last I was able to ride.
I started spring classes at UNM’s Paramedic Academy while finishing my chemo/radiation. I will never forget sitting in the front row of EMT-Intermediate class on the first day and have Professor Lynn throw a big pile of IV bags down in from of me. I wanted to run out of the class, away from the bags of fluids that had so recently been infusing me with Chemo. I managed to get through that class learning to start IV and letting others start more than 60 on me. I always had one request of my classmates: please do not run the fluid into my veins; the feeling brings back such bad memories.
At the end of chemo/radiation I gave a big smile and thanks to all the wonderful staff that had helped me though saying, “No offense but I hope not to see you all again!” Walking out the door is when it dawned on me that a Cancer Hospital is like The Hotel California, You can check out but you can never leave. I tucked that nagging thought into the back of my head as I walked into the sunlight to start my life again.
In the fall of 2010 I started Paramedic Courses. It seemed my life was back on track, I could picture a future for myself again. Perhaps I would work as a ski-patrol Paramedic, have a little mountain cabin once again with a big fluffy Siberian huskies. I thought I would spend my summers working as a whitewater river guide or going on assignment to do medical work in international disasters.
Two months into the new semester I started noticing annoying pelvic pain and random shooting pains down my leg. The word cancer, Karkinos, comes from the era of Hippocrates in 400 BC Greece. It means crab and it is thought that “the sudden stab of pain produced by the disease was like being caught in grip of a crab’s pincers” (Siddhartha Mukherjee, The Emperor of all Maladies). This is exactly what it felt like to me. A CAT scan revealed several enlarged abdominal lymph from metastasized cancer. Again I was advised to have major surgery within days. This time I knew my odds of living for long were going down into the single digits. I seriously considered not having the surgery knowing it was a futile game of surgical chase being played out within my body, but I pictured my children without me, plus I wanted relief from the pain that increased daily. I never did find any literature showing this to be an effective cure, in fact I think that my surgeon saw how healthy I was and really wanted to do anything to stop what would have been my sure death in the next year. I knew that even Galen in early Rome had written that “The surgical removal of tumors- a local solution to systemic problem- was thus perceived as a fool’s operation.” Of course that was nearly 2000 years ago, we must know more now, I figured.
Two days before surgery, surrounded by my classmates, friends and family I ran 13 miles of the Duke City Marathon Relay I had organized for the Academy students, many showing up with signs pinned to their backs saying “I’m running for Michele.”
The following is taken from a Cancer Sucks blog that I wrote shortly after surgery:
I was lying in bed trying to figure out what to do with myself just 4 days post-op and bored bored bored. My only diversions were reading poetry and philosophy books. Hmm hmm what to do???? I have no plan B and now I have 6 weeks to kill (should I really want to ‘kill time?’ just the thought makes me feel guilty) before chemo & radiation start. Well, I got the harebrained idea that I could go back to my Academy to beg the EMS director to let me continue! No one at school was returning my calls - I felt like I was already written off as dead or at least in some tainted in- between state that makes healthy mortals a little bit uncomfortable.
So I put on my Medic uniform and big girl boots and walked in to my Academy, politely asking to matriculate again into classes. (My new lilac dyed mohawk with a shaved cancer ribbon on the side giving me an extra 3 inches of height and with it a touch of Japanese Anime super girl strength!) Big protests from the Director Mr. McDaniels, “Oh no, Paramedic school is no place for someone fighting cancer! What about your immunity levels? It’s highly unlikely you will pass the cardiac exams and I can’t lower the standards for you” and then after a very long dramatic pause while I held my breath... “If you really want to return... I won’t stop you. Be in full uniform & without That hair color by tomorrow morning!” BINGO! I did it. Begging and groveling have never worked so well
I returned to classes that very evening, after cutting the lilac colored hair off. Then sure enough just as predicted I failed a cardiac exam! Ugh 56% on an exam, now that was a novel experience. Not terribly deterred I carried on, getting 5 out of 6 IV starts in lab while slowly learning to read and interpret EKGs over the following weeks… Most importantly I was back on track surrounded by my supportive classmates. LESS THAN ONE WEEK POST LAPAROTOMY AND METASTATIC LYMPH REMOVAL! I will just do the chemo & radiation over Christmas break and then be ready for school again at the end of January I thought. I have been through this once before and know it will be hard to get out of bed, let alone work 12 hrs hospital and ambulance shifts, but I will cross that bridge then.
I never dreamt I could be up and running so fast. Now I don't have the time to sit around and think about dying so much. Yes it will still come, but I know where I want to be in the meantime. It was hard making the decision to return to my studies given my likely lifespan, but when I really thought about school I realized it’s what I want to do NOW, regardless if I graduate or ever get to work in the field.
The next week I was asking around school if anyone could help me take out my abdominal surgical staples so I wouldn’t have to leave classes to go my Oncologist for removal. No such luck. One of the ER Docs at school laughed at my attempts while kindly explaining, after I had been unsuccessfully tugging on them with hemostats that the staples are curved making them impossible to remove without a special tool.
Now it’s time to study. As my favorite Professor, Dr Brown said, “Michele, it will be a minor heroic act if you succeed this semester.” I like the sound of that.
Six weeks later I remember asking my chemo nurse, “please can you hurry the 5 hour infusion, and I have a final exam to take!” When I sputtered into class pale and nauseous to take a 3 hr final my professor took me aside and said I could take it another day, “No, no thanks, tomorrow and every day after for the next 6 weeks I will just feel worse.” I finished my semester with a 3.8 GPA.
That round of chemo and radiation were soul killing. I decided then that you just get these treatments so you don’t feel so bad about the thought of dying. Really who wants to live feeling so sick? By my final treatment, just thinking of going to radiation would make me vomit. I had a reputation around the hospital for vomiting anywhere, the parking lot, the radiation room, the second the IV was laid next to me for chemo.
Some of the medications made me feel crazy and scared to be alone. I had visions of reapers hovering about me. I was unable to take care of myself, I moved in with my parents. I dedicated the last 3 tough weeks of chemo to each one of my children, Tenzin, Alexei & Audrey. The last weeks of daily radiation I would just shake and cry before my mother drove to the hospital. I was often late from avoidance or vomiting in the parking lot. I managed to finish treatments, picturing that this last terrible week was for Audrey.
I did not go back to school after that Christmas Break. I wanted to take time while I could to recuperate and to spend 24 hours a day with my 12-year-old daughter. When asked, “Where would you like to go most in the world?” She replied “Egypt!” We set off to see the Pyramids, the Red Sea and the Nile, the day after my last chemo/radiation treatment, home schooling her on the road. It was hard at that point to walk all the way across a room without taking a break to sit, let alone pack and organize a trip.
My Radiologist assured me I would feel better in week, and while I didn’t entirely believe him, I figured I would just rest when needed. In London we found that the civil unrest and revolution in Egypt had escalated - the country was closing its borders and evacuating foreigners. We rerouted to go to Morocco where we had an amazing time riding camels in the Sahara, getting lost in the old Medinas and just traveling about at our own equally relaxed pace.
By this last summer I was fully recovered and feeling great again. I returned to Colorado to refresh my whitewater guiding skills and become a Swiftwater Rescue Tech spending wonderful freezing days flipping rafts & practicing rescue swimming in 37 degree rapids. I was looking forward to long hot days working as Kayak guide on Rio Grande where I had just been hired, thrilled to be back in water. I received a full scholarship along with a gift of all new textbooks to return to the EMS Academy for the fall.
Not thinking much about cancer I went to my Doctor to hear the results of the latest PET scan without any fear or anxiety. Of course I was that one miracle! It was obvious judging from how healthy I look! Right?
The visit started out well, casually chatting, catching up with the Physician’s Assistant about returning to school, my recent whitewater swimming adventures, and her pet goats. Then she went silent, I noticed for the first time the PET scan report in her hands. I saw her eyebrows come together with a somber look of caring as she looked me in the eye… “OH NO I said, Oh NO NO NO I mumbled looking at my hands as my mind went wild. It can’t be. You don’t have bad news? Right? No, you can’t! I just got my life back! You can’t have bad news for me, I’m going to school again and I just got a great job. PLEASE…NO.”
The tears forming in her eyes told me otherwise. They found multiple tumors in my pelvis she quietly told me. After that all I remember are bits of phrases like; Many tumors. Not counted. 1-2 cm. No treatment. Can’t Operate. Already had radiation to pelvis. No radiation possible. Clinical Trial available. Retroperitoneal. I’m so sorry. We can’t believe it either. Thought you were cured. No need to do a pelvic exam now. Call us when you want to come in again. Don’t need to schedule any more appointments. Call anytime. So sorry. Tears. We are here for you. PET scan in another 3 months. Under a year to live. Maybe.
Numb. I don’t remember anything after that. I didn’t tell my family for another month enjoying the feeling that it wasn’t true. I called the Physician’s Assistant a couple of times to ask her to read my chart again, double check the name, ok? I hoped I was having a psychotic break with reality and making it all up. So then I would just have a diagnosis of mental illness but not terminal cancer. I wished I had something easier to live with like HIV, since that has a better long term outlook.
Telling my family was hard. It was particularly excruciating telling my daughter whose eyes became saucers slowly filling with tears as she realized what I was saying. We had become incredibly close since travelling together. Lexei my 16 year-old seemed to take it in stride, almost with a shrug of “why worry today about what won’t happen until tomorrow.” Tenzin at 19 became silent, brooding in a very private way.
Guiding with Quietwaters Paddling Adventures Albuquerque
I declined my scholarship and returned my books. I worked on the river up to 12 hours a day. It was there I noticed how hours could go by without one thought of cancer. I kept thinking how fun it would be to stand on the water, floating peacefully down the Rio Grande. Standup Paddling was about to change my life, again, as the idea for Starry Ganga came to me over the course of a few weeks.
Why did you not get a Pap Test for 10 years?
Ouch. I have many reasons - it depends on the day I’m asked.
Honestly I have given it a lot of thought. The easy answer is that I did not have any health insurance. Twice I scheduled doctor visits for annual Paps and cancelled because I did not have the $230 fee. I was self-employed and did well but for some reason did not justify this expense. By the time I visited Gunnison Public Health I qualified for free well women check-ups. At the time, as many ski town women do, I worked four low paying seasonal jobs; of course none came with benefits.
Another answer is that since I was no longer able to have children after the birth of my daughter I did not think about going in for regular check-ups. I was happy to not have to go through the annual process of GYN exams.
What are you most worried about?
As of late September I am very concerned for the people of Uttar Pradesh and Bihar currently getting torrential floods from the late Monsoon rain.
I am worried about having the stamina, as I can feel myself getting ill.
I worry about not making the $100,000 I hope for GIAHC.
Last but not least, I worry about leaving my children for 5 weeks. That is very difficult for me, but they are with family and they know I love them very much.
Are you in remission?
No, in fact it’s quite the opposite. As of Oct 3rd 2011 a PET scan has shown my cancer to be spreading through my lymph system from my pelvis to my neck. It’s starting to give me pains, nausea, and fatigue. So it will be a race to get on the water, paddle my heart out, and then raise the funds for GIAHC before I get too weak. I will not likely see the film of the project.