Patient Stories Archives

Living With CLL: Christina’s Diagnosis Story

Living With CLL: Christina’s Diagnosis Story from Patient Empowerment Network on Vimeo.

After chasing a diagnosis for almost a year, Christina Fisher shares how she was finally diagnosed and how she lives well with CLL.


Transcript:

Andrew Schorr:

Andrew Schorr with Patient Power here with Christina Fisher from near Portland, Oregon, diagnosed in 2013 in an odd way with a consultation with an ENT specialist who did a biopsy basically or an excision of your swollen lymph node, and then it turned out to be CLL.  Shocker, right?

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  And so that had you go on a journey to different oncologists and ultimately CLL specialist, and so you’re doing well now with some of the latest medicines, in your case venetoclax, Venclexta, with Rituxan and delivered with Rituxan (?) high cell as kind of a quick infusion.  How are you doing?  Are you doing well?

 

Christina Fisher:

I’m doing well.  It’s been a little bit bumpy over the holidays for the last four months or so, but I’m emerging, feeling well.  Thank you.

 

Andrew Schorr:

Okay.  But it was also bumpy in getting to a diagnosis, getting to the right specialist, right? and knowledgeable team, so what is the lesson for people to be their own advocate?

 

Christina Fisher:

Be dogged in your determination.  Do not give up.  Be your own advocate.  Do your research.  Have your questions ready ahead of time.  Just don’t give up.  I had so many obstacles trying to arrive at a diagnosis, and the frustration was insurmountable, but I didn’t give up.  I knew something was wrong.

 

Andrew Schorr:

Being in your mid‑40s and having weird symptoms when CLL is often a disease of people older, your doctors were saying, oh, you’re fine.  I mean, the idea of leukemia never came up early on, right?

 

Christina Fisher:

My primary care physician was flip about it and had actually made several comments such as you are way too fit to have cancer, your blood isn’t displaying anything in particular, almost to the point where he made me feel like a hypochondriac.  But I had a large lymph node swollen over my collar bone that would not recede, and I went through a year of asking him for a biopsy, asking him for further tests, to the point of tears in frustration, and I received no answers.

 

Andrew Schorr:

And it was ENT specialist, a different doctor, who finally said, let’s take a look at that lymph node.  That’s what led to the pathology report, and that’s when‑‑you got a call a couple of days later.  Tell us about that.

 

Christina Fisher:

Well, initially my eyes had swelled shut.  I went to an ophthalmologist who was roommates with the ENT, and it turned out that their other roommate had removed my swollen gallbladder as well.  They started talking about me.  And so they sent me to the ENT, and she was extremely efficient and tuned in, and she saw the lymph node over my collar bone, and she had done other things that ENTs do during the exam but ultimately stated that something else is wrong with you.  Do you have a moment?  Let’s step into the surgery room and we’re going to extract a lymph node right now.

 

So that caught me off guard, but I was game.  And she removed a small lymph node from my neck and said it will be about a week to do the pathology, but, yes, called me in two days.

 

Andrew Schorr:

And said, what do you think you have?

 

Christina Fisher:

She said, what do you think you have?  And I‑‑she said, you know you’re sick.  What do you think you have?  And I said, I think I have leukemia or a form of it.  And she said, you’re right.  Would you like to sit down and talk about it?  So it was kind of hard to hang onto the phone at that moment, but I wanted to know what kind it was.

 

Andrew Schorr:

Now, Christina, you found your way to a CLL researcher.

 

Christina Fisher:

I did.

 

Andrew Schorr:

Specialist.  So what is your advice to people when we know there’s this whole changing world of treatments and combination therapies and clinical trials.  You’ve been in some clinical trials.  What would you say to patients about at least getting a consultation with a CLL specialist?

 

Christina Fisher:

You must.  You must seek out a consultation with a specialist.  It is up to you as a patient to seek one out and obtain that appointment.  No one is going to come to you and say, hey, maybe you should make an appointment or I’m going to give you a referral.  You need to make that appointment and see a specialist that you’re comfortable with.  And if your personality or maybe the information doesn’t quite deliver in a manner that you prefer, find another one.  There are many in the country now for CLL, and I was fortunate enough to be accepted into a program at OHSU where‑‑

 

Andrew Schorr:

Oregon Health & Science University.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  So you’ve gone from having your eyes swollen and shut and a big lymph node on the side of your neck, and at one point I think even being weak and being in a wheelchair to doing well.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

So what’s your outlook for the future?

 

Christina Fisher:

Well, I feel like I’ve been released from a cage recently, and that’s something that I’m considering, and so my husband says he knows I’m doing better when I nag more, and, believe me, I’ve been nagging.  So I’m feeling so much better just recently, and I feel like that I have hope for life.  I have hope for a future.  I have hope that there’s just a chronic condition or a cure.  I feel fantastic right now, and so I’m looking forward to a very active summer, definitely.

 

Andrew Schorr:

Good for you.  Christina Fisher, wish you the best, continued better health, and I’m glad you have the right team working with you now, and thanks for speaking up and telling others to speak up.

 

Christina Fisher:

Thank you, Andrew.

 

Andrew Schorr:

Okay.  Andrew Schorr, and you can see personal advocacy and knowledge can be the best medicine of all.

Facing Acute Myeloid Leukemia: Notes from a Survivor

In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures.  I felt great and had no reason to think I had any health problems.  When my doctor suggested some routine blood work, I readily complied.  When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied.  When the results came in, my life changed forever.

The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy.  I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin.  I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.

As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities.  If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant.  My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant.  If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.

My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank.  Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system.  For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.

For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace.  It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease.  Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”

Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.

The first set of practices that sustained me was mindfulness, meditation and yoga.  To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment.  Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next.  Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.

Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week.  I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects.  In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.

A second practice involved being a proactive patient.  Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.

On several occasions, my proactive stance made a positive contribution to my treatment.  When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect.  I suggested changing the dosing schedule, they concurred, and the problem resolved.  The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.

A third practice involved maintaining a regimen of physical activity.  During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons.  I developed a routine of walking the halls three times a day, trailing my IV pole behind me.  They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.

When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls.  But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.

A fourth practice involved maintaining my sense of humor.  I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings.  Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease.  Using humor became another way of keeping the cancer at bay.  It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.

Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor.  These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers.  In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.

A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery.  Narrating my story for others required me to make sense of it for myself.  The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me.  While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.

I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period.  This writing would eventually serve three purposes.  It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.

As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival.  But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.



 

A Journey of Resilience

Nothing in life can ever prepare you for the news of a life changing illness of any type. This was the case in 2006 when I was diagnosed with Complex Regional Pain Syndrome or CRPS for short. A rare neuro-autoimmune disease that causes constant chronic pain and can also affect the immune system, skin, muscle, joints, and bones it is known as the most painful chronic pain condition there is. The other name of which people refer to CRPS is “the suicide disease”, for which no explanation is really needed.

I live in Regina, Saskatchewan. If you don’t know where that is that’s in Canada. As a happily married father of two very special girls, family life was everything and more leading up to diagnosis. I held a position in senior management with a large company and my wife had decided to leave nursing to pursue her desire of being a stay at home mom. Life was good! Then our world was suddenly flipped upside down as a simple surgery to remove a cyst in my left wrist went really wrong.  Immediately after the surgery I started experiencing a burning in the arm. Not to mention the severe pain and swelling that was going on. Something was very wrong and the pain getting more unbearable by the day.

This would set off almost an almost two year journey into trying to figure out what was causing such horrific pain. I also began to display numerous other symptoms associated with CRPS. Symptoms like sensitivity to touch and temperature, waxiness of the skin, hair loss, and disfigurement to name a few.  Eventually, I would visit upwards of twenty physicians being tested for every disease you could think of. Yet no physician was able to make any form of a diagnosis. Without answers trying to treat this disease was difficult. Eventually, I was unable to use my hand at all, and the pain left me unable to function on most days. So I would be forced to go on permanent disability.

After virtually exhausting all the resources within Saskatchewan I would have to seek help outside the province. With paperwork already filed with the Mayo Clinic and preparations being made to go, we received a phone call from a friend who is a physician and knew of a specialist who specialized in chronic pain. We flew out to Vancouver, B.C. where the specialist was able to make the diagnosis of CRPS and tell me there was no cure, and that there was very little he could do to treat me.  As I walked out of his office I remember being hit by a wave of emotions!  Suddenly everything was becoming so real. Things like fear and anger were trying to take over my mind. I didn’t know what to feel or where to turn next.

As if this wasn’t enough, after an injury to my ankle CRPS spread into my left ankle and leg. This would eventually mean that I would need to use a cane to walk at all. To say the journey up until this point was frustrating is an understatement! Not wanting to focus on the negative however I remained optimistic in my pursuit to find the help I needed. Through a series of tests that I would have in order to try and manage the pain in my leg, I would finally find a specialist who could help with a treatment plan.

It had been almost two years up until this point but I finally felt as if there was a little bit of hope that something could be done to help me manage this disease. I had finally been referred to a neurologist who works with a small team of professionals who worked with CRPS patients. This is the part of my story that I get so frustrated with because we had gone full circle only to end up right back here in Regina. Had other physicians or specialists been more aware of CRPS then quick diagnosis could have happened.

It was refreshing finally having a team of healthcare professionals who truly understood what I was living with. The goal was to try and help me gain back a quality of life I had lost and maybe more. So over the course of the next several months I would form my treatment plan which was to be a combination of medications and surgically implanted neuro-stimulators.  After ten major surgeries and extensive physiotherapy I started walking short distances. I also started working with a psychologist to try and help with aspects of my mental health that I was struggling with. These were both positive steps and gave me the motivation I needed to keep moving forward.

As I started coming to terms with everything I was going through with this disease I began to see that I didn’t have to let it hold me hostage. Sure, things might be good one day and bad the next but I could chose to be positive and move forward to the best of my abilities. I had to ask myself a really hard question. Was I going to let CRPS define who I am or what I can do with my life? There was still so much about my life that was so good! I was just having trouble seeing that through all the emotions. Once I figured all of that out, it made moving forward so much easier. It was at this point that I decided to start using my story to help others and to advocate and raise awareness.

There are so few resources available to those of us struggling to find diagnosis, treatment, or even support programs with a rare disease like CRPS. So in the middle of the night I wrote a letter to our Premiere outlining my story, similar to the one here asking him to declare Nov 2 CRPS Awareness Day in the Province of Saskatchewan. The goal of this was just to do my little part here in my part of the world. Before long this was in place and I now have a yearly event taking place. Right here in my city we have had Feb 28 declared Rare Disease Day, and I have started a Peer2Peer support group through the Rare Disease Foundation. I speak at, and attend conferences across Canada and the U.S. in order to try and raise awareness and create change. Those efforts are making a difference because here in Saskatchewan with the efforts of CRPS Awareness Day we have managed to see changes in the teaching curriculum for second year med students.

Trying to fit thirteen years into what I’m writing today isn’t easy because it would take a book to try and explain all the different ways that chronic illness affects an individual’s life. My story that I’ve outlined here for you today, really only touches the tip of the iceberg when it comes to what my family and I have had to endure. However, I’m choosing to see only positive and the things that bring me hope in my particular journey. Things like the levels of awareness that have been raised within my community and province. Or the personal friendships and support from different communities that I have gained along the way. I can’t say what will happen down the road but there are a lot of things that are in our control. What choices will you make?

Living in Fear … Here is my Plan Should My Cancer Recur

Six years ago I went for my first mammogram. I was 40 and thought nothing more about it other than the obligatory 40 year marker of due diligence. In my mind, cancer didn’t run in my family, so this is just the beginning of my routine mammogram journey.  Imagine the shock when I was called back for more imaging the next day and then told to take a seat in the waiting room for what seemed like forever.  Shock turned to fear, as I sat listening to the radiologist tell me that I most likely had breast cancer and needed to see a surgeon right away.

The surgeon ordered a stereotactic biopsy which uses mammographic X-rays to locate and target the area of concern and to help guide the biopsy needle to a precise location. After the sample was collected, it was sent to a pathology lab to determine if there were cancer cells present. The 2 days of waiting for the results seemed like an eternity. The “what-if” was real. I had breast cancer.

Everything moved quickly from that point. Early detection was key to my plan that included a lumpectomy followed by 7 weeks of radiation. I opted for the earliest possible date for surgery and 2 weeks later it was done. Everything went by so fast that even to this day, I really don’t remember how I actually felt at the time because I was so focused on getting it done and moving forward.

Moving forward does include a new “what-if” that weighs on the minds of people in remission. What if my breast cancer returns? All the genetic testing I did showed little chance of recurrence, but still…what would I do this time?

What is My Plan if My Cancer Recurs?

I’ve done my share of diligent research on standard cancer care and cutting-edge cancer therapies. Much of the findings have me saying to myself “I wish I had known about this 6 years ago” and I talk with many other cancer patients saying this too. Through my discoveries, I took a profound interest in tumor storage. As a breast cancer survivor and patient advocate, my plan includes a more personalized approach to my cancer treatment.

First, I will store my cancer cells alive so that I can test various drugs on these cells and prioritize which ones (or combinations of) actually works (look up organoids), I can enroll in one of the cellular immunotherapy trials that activate the immune system to fight the cancer and minimize the chance of relapse (look up dendritic cell vaccines or T-cell therapy), and I can also genetically profile my tumor to identify targeted drugs and/or clinical trials to enroll in. I will have StoreMyTumor (www.storemytumor.com) handle the tumor preservation so that this will be an option for me tomorrow or in years to come. In my work, I see many advanced cancer patients have doors open for them that would not exist without their own preserved cancer cells available for testing different treatment options.

Personalized treatments start with the cancer cells, and I will lean on StoreMyTumor to be my resource for emerging personalized treatment options and trials all around the world. Every tumor is unique and contains information critical to treatment, but tumors are not preserved alive by hospitals and routinely discarded as medical waste.

Why are more patients requesting that their tumors be stored?

Cancer patients achieve a new level of control of their cancer management through their own Personalized Tumor Intelligence. I see this all the time as a Patient Support Coordinator interacting with cancer patients at all different stages. With the rapid pace of emerging new therapies, there is no reason to settle for the standard of care when there are better and more personalized options available. You just need to find them and be your own advocate to save your life.

Deceived But Not Defeated

I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.

Singing Through Cancer Helped Me Survive

I was not very curious about the nuances of singing and producing pitch during my younger adventures in a choir. A solid chorus member, I enjoyed the demands of music acquisition, the camaraderie, and the chance to conjure my inner diva, when appropriate.

My perspective changed when I heard the words “You have cancer.” That year, those four syllables cracked me and my beautiful, imperfect, 45-year-old life wide open and handed me the dramatic role no woman desires. I found myself memorizing not Latin and French lyrics, but malignancy’s bewildering status symbols: grade, stage and node, hormone reception and recurrence. I donned drafty hospital gowns instead of costumes or robes, and summoned the diva, not to perform, but to confront a relentless, faceless villain. When offers of support poured in, I learned “Yes“ and “Things will be OK” were the only lines I needed.

I completed my transformation, from ordinary woman to infiltrating breast carcinoma patient to survivor, in just eight months. During the harrowing passages, I felt scared, boxed-in, smaller than before. Carrying the role of cancer patient sometimes left me gasping and utterly out of tune. And I’m one of the lucky ones.

Facing a life-disrupting disease didn’t give me special gifts, but it reminded me that strength and healing come from unexpected places, and it deepened my appreciation for the restorative powers of singing and music. I’ve never regretted the nights I showed up to sing when I was too weary to speak or even stand.

– – –

Singing in perfect pitch tests professionals and amateurs alike. It’s an acoustical feat of mathematics, physics and human anatomy. We climb musical scales powered by our vibrating vocal folds. The higher we go, the faster the vibrations. Those frequencies are measurable, but how our ear perceives pitch is subjective and more complex as we approach our voice’s upper limits. It’s tough for one accomplished soloist to stay the course. That challenge expands exponentially when many differently gifted vocalists attempt the crossing together.

Diabolical phrasing, chords that don’t resolve, inadequate breath control, nerves and the winter’s chill lead us astray. Sorrow enters our rehearsal spaces, announcing itself with drooping shoulders and sagging tones.

When the choir drifts off-key, directors “tune” our voices with exercises to improve pitch accuracy. We might vocalize in sections over a major chord or focus on creating an elusive, well-tuned third and then, at the director’s signal, migrate to a lower one. Interesting things occur as we’re sustaining our notes. Vibrations collide, blanketing us in an exhilarating cloud of sound that helps us recognize if we’re hovering under or over so we can recalibrate. If our tone flattens, we brighten it together, modulating up in barely-perceptible increments until all singers land on a near-perfect third or triad.

The instant when 10 or 20 choir members lock into magical harmony to sing as one voice defies description, like a ballerina’s floating, a perpetual string of fouettes. It isn’t buzz, scream, or reverb, but when an ensemble gets it right, the air celebrates with us.

– – –

I was hitting my mid-life stride when those four syllables knocked the wind out of me. I had a loving husband, amazing sons, good friends, interesting work, and meaningful volunteer pursuits. I’d even forged a delicate peace with painful childhood circumstances that bled into adulthood, and I was envisioning my next chapter.

In the lead-up to Thanksgiving, I came under bombardment. Dad and I were saying reluctant goodbyes. We knew he was running out of options and precious time. Many afternoons, I held his hand, saw his battered body succumb to cancer’s onslaught. I returned home at dusk to quietly plot my own body’s defense amid an escalating campaign of biopsy and MRI results and five-year survival projections. I had just reassured Bob and our kids (and myself) that, after my treatment, things would be okay when we were called to gather at Dad’s hospice.

On his final night, Dad’s chest labored with every subsequent breath until we watched him draw in and hold onto his most important one. The air patiently awaited permission, then transported my father to his next home. Dad died of cancer four days before my surgery; I attended his funeral, in a haze, five days after.

Amid the pandemonium, I refused to abandon the singing and ballet that anchored me in other storms, but my positive outlook didn’t spare me the progressive toll of chemotherapy, radiation and estrogen-destroying medications. Cellular warfare punished my stamina, spirit, and untrained, lyric soprano. Amid brain fog, hobbling myalgia, crushing fatigue and disappearing hair, my suffering soprano seemed like cancer piling on. What was clear and steady became temperamental and prone to croaking or evaporating mid-larynx. The diva went into hiding.

I smiled when people said, “You’re so strong.” Making peace with vulnerability was harder; it required a system override or an existential re-tuning.

I noticed the subtle, curative powers of music-making, how it awakens emotions and gently moves us into community. I soaked up the beauty of silences and admired how we stagger breathing in torturous passages to support the sound and one another and how a lush, alto line sends descants floating to wondrous heights.

There were some bruising remarks and sour notes. One regretful solo I should have refused, accomplished with sleep-inducing quantities of antihistamines. Yet I mostly recall how gracefully my musical community tuned me. Changing seats to accommodate scary side effects. Steadying arms when emotions overtook me. The kind diva passing me missing choreography, instead of scowling, when I accidentally trampled on her solo.

Friends raising a glorious roar when I could barely chirp, reminding me we belong to something mightier than any hardship or disease.

Singing through cancer punched up my playlists for the blessedly ordinary and terrible days and taught me to treasure songs that speak directly to our broken places. I count on the haunting, intersecting supplications of Renaissance master Victoria and Bach and Coldplay to calm the MRI chamber’s mayhem. It’s Prince, Bowie and Jackson Browne inviting me to dance in my kitchen. I memorized those melodies that carried hope and faith back to me when they went missing for a spell.

– – –

I’m still okay. Gratefully, still a lucky one. I reclaimed my diva and, shortly after our move to Connecticut, joined a lovely women’s chorale. I’m discovering anew how routine vocalizations can realign not only discordant notes, but our anxious minds. At a recent rehearsal, I could almost see all our invisible burdens yielding to the room’s overtones, then evaporating in the swirling, ephemeral soundscape.

I believe the best choirs accept our offerings of exacting diction, buttery timbre and angelic tones, along with our heartaches, to grow something of honesty, tenderness and majesty. Sing long enough and you’ll one day find yourself harmonizing with and holding up someone who’s making her way out of a dark or lonely valley.

The fragile heart and unpredictable, faithful voice rising with the descant (and missing an entrance or two) were once my own. People said I inspired them by sharing my voice while my body was so visibility under siege. It was uncomfortable, almost as unnerving as cancer itself.

Looking back, I think that was the point.

Patient Profile: A Follow Up with Meredith Cronin

Meredith Cronin

Breast Cancer

You may remember Meredith Cronin from our three-part breast cancer series in October. She shared her experience of being diagnosed with and treated for breast cancer seven years ago at the age of 37. She had three young children at the time and remembered being grateful that she was so busy with her family that she didn’t have time to become weighed down by her illness. “Attitude is everything,” she told us. Meredith wanted as much time as possible with her family so she did everything she could to combat the cancer and make sure it wouldn’t come back. She had a double mastectomy, she did chemotherapy and radiation, and she got a second opinion from a research hospital. When her treatments wrapped up, her doctors told her they didn’t expect her back. She was cancer free.

Coincidentally, the same week Meredith shared her story, she had surgery to investigate a lump she’d found under her arm. The lump was malignant. Her cancer came back. Needless to say, her doctors were all very surprised. The lump was in a tricky area near blood vessels, nerves, and scar tissue. She had a second surgery to make sure the margins were clean and then she began, what will ultimately be, 30 radiation treatments. The radiation is precautionary and preventive. “The doctor says I’m cancer free at this time,” she says, but Meredith and her doctors want to be sure the cancer is gone for good this time and doesn’t come back again. She goes for treatment every day and twice on Fridays so she can have it finished by the end of this month.

Despite the intense radiation, Meredith says she is feeling good. She doesn’t have a lot of fatigue and her skin is holding up. Her two youngest children have even been able to come to treatments with her. She says it helps them to see that she’s okay so they feel better about what’s going on. Her recurrence was pretty upsetting for all of them, but they’ve been able to keep a positive perspective. She says her husband summed it up pretty well when he said, “The short term sucks, but the long term looks good.” And, so far the kids all seem to be focusing on the long term and supporting their mom. “They like to wear their pink,” says Meredith.

Much like her first round with cancer, Meredith is being thorough and aggressive in her treatments. In addition to radiation, she is eating well and working out every day. This week, she is going to a research hospital for a second opinion on whether or not she should add more therapies to her current treatment. “The second opinion is more about doing chemo or if they have another suggestion,” says Meredith. Her doctors now aren’t recommending chemotherapy due to the risks associated with it. Long term effects of chemotherapy can include lung, heart and kidney problems as well as the risk of developing a second cancer.

Meredith has also started taking injections to force menopause as another preventive step. Once in menopause, she’s able to take a more effective medication than the one she has been taking. She says she doesn’t know what to expect from menopause, but she’s willing to do whatever she has to in order to keep the cancer from coming back. She’ll do the injections until maybe spring 2019 when she’ll have a hysterectomy and possibly an oophorectomy, where both ovaries are removed. That’s always been part of her preventive plan someday. “I’ve been putting it off for years,” she says. “I’m kind of kicking myself now.”

Vigilance about staying on top of your health is the message that Meredith most wants to share. Even when you’ve been told you’re cancer free, you have to check out every lump, every change that comes along. “Stay on top of it. Keep following up with it,” she says. Meredith says she’s learned that even though her cancer is gone, she still has a lot to do to make sure it stays that way. She’s cancer free, but not necessarily free from cancer. “I’m just going to keep doing what needs to be done,” she says.

You can find the three part series on breast cancer featuring Meredith and five other women on the Patient Empowerment Network blogPart IPart II, and Part III.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Patient Profiles: Breast Cancer Part III

This is the last installment in our three-part series profiling breast cancer survivors. In Part II, the women gave insight into the importance of their mental health and their own attitude as critical components of care. They also shared some of the ways in which they coped with cancer. Today, the women talk about the possibility of recurrence. So, we pick up with the final stage of Shannon’s preventive measures. Based on her history, she knows her cancer can come back, but she wanted to do everything she could to prevent it.

Shannon’s treatment didn’t stop at reconstruction. She opted to have an oophorectomy, which meant she had her ovaries and fallopian tubes removed. Remember, her moms’s cancer had returned and been terminal, so Shannon wanted to take every preventive measure she could. “My fear and my worry is that hers came back 16 years later and she died at 65. If the same thing happened to me, I would die before I’m 60,” says Shannon. Her breast cancer diagnosis meant she was at higher risk for female cancers and she wanted to do whatever she could to have as much time as she could. “I’m relatively young,” she says. “I wanted to give myself as long as I could.” In order to have the procedure, Shannon had to take medication that would put her into menopause and the side effects that came with menopause affect her quality of life, so she says she goes back and forth on whether or not she would do the oophorectomy, if she had it to do all over again.

Although she did have melanoma a couple of years ago, Tina has been 27 years without recurrence of breast cancer. “I didn’t really feel safe until five years out,” she says, but adds that you never really know if it’s coming back, and that you should always be vigilant about checking for lumps. There is a risk of late recurrence, i.e. breast cancer that comes back more than five years after diagnosis and treatment, and it is more likely if it was later stage when first diagnosed, and if the cancer was HR positive.

Like Tina, Betty also had a second cancer. Her colon cancer was discovered in 2009 and her doctor estimated that it had been growing for ten years, but because of where it was growing in relation to the colon wall, the tumor was able to be cleanly removed and no treatment was required. Because her breast cancer was ductal and not in the tissue, and her doctor was able to get very clean margins, Betty says she doesn’t worry about it returning. “I’m more afraid of the colon cancer returning,” she says.

Diana has been nine years without recurrence, but she says, “My guard is always up.” Maybe it’s because her mother and grandmother both had breast cancer, and, despite being BRCA negative, she believes her cancer is hereditary. Shannon feels the same way and says she believes 100 percent that her cancer is genetic. The genetic testing available is limited compared to the number of genes in the human body so, Shannon says, “There’s a long way to go.” And, while it’s early for Shannon to think about recurrence, she can’t help but consider it. “I don’t want to spend every day thinking about cancer. I don’t want that to be my life,” she says, “but it is in the back of my head.” Not knowing how the cancer might come back makes Shannon especially uneasy because she doesn’t have a plan for it.

When Meredith finished treatment, her doctor said he didn’t expect to see her back for recurrence. The odds were in her favor that she would remain cancer free. Meredith, like Betty, says she got the best cancer to get if you’re going to get cancer, but unlike the other ladies, Meredith was not expecting to get cancer. She didn’t have the same family history. Her only red flag was that she had an aunt that had ovarian cancer and she thought maybe her grandmother had breast cancer when she was 90. Meredith was young, she had three small children, and breast cancer was not on her mind. In fact, she was so sure she didn’t have it, that she took her 18-month-old daughter with her when she got the results from her lumpectomy. But, Meredith, who is also BRCA negative, did have cancer, and while her cancer was ductal, it was bigger than it should have been, and there was also a spot on her other breast that needed to be watched. Wanting to be proactive Meredith opted for a double mastectomy with reconstruction. She also had chemotherapy, because the cancer was found in a lymph node, and she lost all her hair. While she possibly could have gone without radiation, she opted for it. Again, she wanted to be aggressive and as proactive in her treatment as possible. She wanted to make sure her cancer was gone.

About a month ago, Meredith found another lump under her arm. She had a scan that was all clear except for the spot where the lump is located. She and her doctors are hoping it is just scar tissue, but she’ll have a lumpectomy this week and then she’ll wait for the biopsy results, which she is guessing will take several days. “The waiting is the worst,” she says. Liz, as a caregiver, felt the same way about waiting, “The worst part of all of it was waiting for the results.”

Tina, who also had young children at diagnosis, recalls that she just wanted to live long enough to raise her children. She says she found it difficult to accept the idea that she might die before her kids were grown. That thought is clearly on Meredith’s mind as well. “I remember saying, ‘Just give me five more years,’ and now it’s been seven years, and I’m saying, ‘Just give me seven more years,’ but no amount of time is enough,” she says. You can hear in her voice that she’s trying to be brave, and she says, “Hopefully, it will all be fine,” but it’s scary because, even though Meredith got the best cancer you can get if you’re going to get cancer, it is still cancer.

Anxious to hear Meredith’s results? We are, too, and as soon as she gets her results, she’s promised to follow up with us. We’re hoping for good news, and we will let you know as soon as we can.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profiles: Breast Cancer Part II

In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.

Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable News here, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.

Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”

The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.

The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”

Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.

Next time, in Part III, recurrence.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profiles: Breast Cancer Part I

Female breast cancer awareness, with it’s pink ribbons, and Save the Ta-tas t-shirts, and fundraising 5Ks, sweeps into October each year with the same prevalence as pumpkins. No other cancer has managed to garner as much support, attention, or money. But, even without the pink campaigns, the prevalence of breast cancer is not a secret. An estimated one in eight women is diagnosed in our country, and there are about 1.38 million new cases worldwide each year. You’d be hard-pressed to find someone who doesn’t know a breast cancer survivor. This month, in a three-part series, Patient Empowerment Network is taking a closer look at five survivor stories and one caregiver. These women represent the more than 3.1 million women in the United States who have a history of breast cancer. In today’s installment, you’ll be introduced to five of the six women, and you’ll learn that getting a breast cancer diagnosis wasn’t really a surprise to any of them.

Breast cancer survivors are interlaced through all of our lives, and there is something very endearing about how openly willing they are to share their stories. They freely talk about their diagnosis and treatment, but more than that, they talk about their darkest moments alone in the hospital, or their need for counseling after treatment. They discuss the lengths they will go to endure invasive treatment that may prolong their lives, and they share their prayers to live long enough to see their children grown. They are so deeply candid that it’s as if they are inviting you to be a guest for the day in their exclusive club.

Only it’s a club you don’t really want to be a part of, says Betty Abbott, who was diagnosed five years ago. She was 72 at the time, and her cancer was ductal and non-invasive. She says it’s the kind you want to get if you’re going to get it. But, is there really a kind of cancer any woman wants to get? While the death rates for breast cancer have been decreasing since 1989 thanks to increased awareness, early detection, and advances in treatment, breast cancer is still the second leading cause of cancer deaths in women in the United States, second only to lung cancer. In 2018, approximately 40,920 women are expected to die from breast cancer.

Cancer is cancer, no matter the stage, the type, or the form. “That’s the thing about breast cancer…it’s still cancer,” says Liz Abbott. She’s Betty’s daughter. The two are very close, and Liz was with Betty every step of the way through diagnosis and treatment. Liz hasn’t had breast cancer…yet, but she fully expects to get it. She knows the statistics. Even though less than 15 percent of people who get diagnosed with breast cancer have a relative diagnosed with it, a woman’s chance of getting breast cancer nearly doubles if a first degree relative (a mother, sister, daughter) has had it. So many women get breast cancer, so many families of women, that for some women it’s no longer if they will get it, It’s when. Since her mom’s diagnosis, “our new realities are very different,” says Liz, who can’t help but worry if breast cancer is her own daughter’s path as well.

It was the path for Shannon Knudsen, who was diagnosed three years ago, when she was 43. Like Liz, Shannon was very close with her mother and walked with her through diagnosis and treatment of breast cancer. Shannon’s grandmother and great grandmother had breast cancer as well. So, for Shannon, breast cancer was never an if. “I never thought I wasn’t going to get it,” she says. “It was always a matter of when.” So Shannon wasn’t surprised by the diagnosis, but she says she was angry. You see, while she was prepared and had a plan, cancer still managed to throw her what she calls “an interesting little twist”.

Since she watched what her mom went through, being diagnosed at 49 with recurrence as leukemia 16 years later that was ultimately terminal, Shannon was diligent about staying on top of cancer research, and as soon as she learned that genetic testing was available, she looked into having it done. She was absolutely positive that her family carried the BRCA gene mutation. The BRCA1 and BRCA2 genes produce proteins that help repair damaged DNA cells. When either of the genes has a mutation and the genes don’t produce the protein or function correctly, DNA cells are more likely to develop changes that can lead to cancer. There are specific mutations of the genes that increase the risk of female breast and ovarian cancers. People who have inherited the mutations, which can come from the mother or the father, are more likely to develop breast and ovarian cancers at younger ages.

As soon as Shannon’s insurance covered the testing, she had it done. Fully expecting a positive result, Shannon was prepared to have a preemptive double mastectomy with reconstruction. But, Shannon’s results were negative. She doesn’t carry the BRCA 1 or BRCA 2 mutations.“I was shocked,” says Shannon, and she feels like the results gave her a little false security. That’s where the anger came in, because in August 2015, when her mammogram and subsequent 3D testing showed a black and jagged spot of concern, she knew that meant she was bound for chemotherapy, and that was something she had always planned to avoid by having preventive surgery. “I was 100 percent prepared to do that, and it didn’t work out that way,” says Shannon. Cancer, as it often does, had other plans.

Cancer had other plans for Tina Donahue as well. “It was a really, really difficult time in our lives,” says Tina of her diagnosis in 1991. It’s not that Tina wasn’t expecting to get a diagnosis at some point. She also had a family history of the disease, her maternal aunt died from breast cancer, and Tina was a nurse so she had a keen understanding of her risk, but when she was diagnosed at 44, she had just been promoted to an executive vice president position at work, and she had three young sons. She was also in school to get her MBA. Cancer was not part of her plan, and she thought she was going to have to quit school when she was diagnosed. However, thanks to the support of the other women in her study group, Tina didn’t have to quit school. She says the women rallied around her, told her not to quit and helped her, encouraged her, and tutored her through.

When it came to treatment, Tina and Shannon, though diagnosed more than 20 years apart, had very similar methods. “I just wanted to hit it as aggressively as I could and give myself as much life as I could,” says Shannon. She told her surgical oncologist that hers would be the easiest consultation ever. She had done the research, she knew the risks, she knew exactly what treatment she wanted. Tina, who also wanted to treat her cancer aggressively says she told her doctors, “Give me everything you’ve got.” Both women had a double mastectomy and reconstruction with silicone implants. Tina says her implants lasted 23 years before she noticed they started getting folds in them, which was a sign that both implants, though contained, had burst, and she had to have them redone. Shannon’s implants are a newer technology called gummy bear implants and are designed so that they won’t burst. Tina says the silicone felt and looked more natural, and Shannon says that was important to her as well. Tina also says that if she hadn’t been a nurse who had seen a lot of recurrence in women who had had a single mastectomy, and if she hadn’t been witness to her aunt’s experience, she may not have opted for the double mastectomy.

Diana Geiser did not opt for the double mastectomy, but now says she wishes she had. Diagnosed at age 50, Diana says she struggled with the decision at the time and remembers feeling like she wanted to keep part of herself. “Now I wish I’d done both,” she says explaining that one of the draw backs is that her natural breast gets bigger or smaller with weight fluctuations, but her reconstructed breast does not.

Regardless, all three women had four rounds of chemotherapy. They all had clear lymph nodes, and were hormone-receptor-negative (HR negative), meaning that it was likely that hormonal therapies wouldn’t work for them. Tina, still wanting to treat her cancer aggressively, says she wanted to kill everything and had low dose chemotherapy. She lost some of her hair, but not all of it. For Shannon and Diana, the pathology reports came back showing their tumors were aggressive, Shannon’s highly so, making chemotherapy necessary. They both lost all of their hair, which is something that must be incredibly pertinent to breast cancer survivors, because whether they did or they didn’t lose it, they all tell you about their hair.

Next time, in Part II, meet Meredith.

 


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profile: Jack Bell

Jack Bell

Hepatoblastoma

Today, Jack Bell is a 13-year-old 8th grader. He’s the second of four siblings, and he’s a generally happy kid. While he doesn’t remember much about it, he is also a childhood cancer survivor. Along with Jack, there are more than 400,000 childhood cancer survivors in the United States, and that number is growing. Over the past 40 years, cancer death rates in children have declined 70 percent. However, with cancer still the leading cause of death from disease among people under age 19, a childhood cancer diagnosis is difficult for the entire family.

“It was not a good time. It really wasn’t,” says Rachel Bell, Jack’s mom, remembering his diagnosis. It was late December 2007. She was expecting her third child in a couple of months and preparing for New Year’s Eve guests, but when Jack, an active two and a half year old, took a four hour nap while she was putting away the Christmas decorations, she took notice. There were other things, too. He fell asleep during a shopping trip to Costco, and Rachel’s husband Ed, who was in charge of bath time, had noticed a protrusion in Jack’s abdomen. With a doctor’s visit coming up, they planned to have it all checked out, but they didn’t have a chance. Jack woke up screaming the morning of New Year’s Eve, and he just wouldn’t calm down. They called the doctor’s office, but were advised to go to the emergency room, where Jack was checked for mono, appendicitis and cystic fibrosis. “They kept ruling things out,” Rachel says, adding that the list of possible illnesses kept getting worse. Unable to determine the cause, Jack was admitted for more testing.It was the next day, New Year’s Day, that Jack’s pediatrician told Rachel and Ed that Jack had cancer.

Jack Bell during chemotherapy, age 2

“It went fast from that point,” says Rachel. “You’re in a completely new world.” Jack had stage four hepatoblastoma that originated in his liver and had spread to both lungs. Hepatoblastoma is a very rare type of malignant tumor, and the exact cause is unknown. Rachel says that in Jack’s case, doctor’s believed it was a fetal mutation in which his liver didn’t stop growing when it should have. Jack had surgery that day. He had multiple masses in both lungs and one in his liver the size of a watermelon. That’s what was pushing his ribs out causing the protrusion in his abdomen.

Jack’s chemotherapy started January 9, and they were making weekly trips to the hospital. They were in and out of the hospital a lot during that time. Anytime Jack had a fever they had to go to the hospital. Just as they were adjusting to their new world, they got another surprise. Though she was not due until February 28th, Rachel went into labor February 5th, and their third son, Sam, was born. Within five hours of coming home with the new baby, they were back in the hospital with Jack who had a fever.

“It was chaos,” says Rachel. She had a new born, a two year old with cancer, and Charlie, her oldest, was five and in kindergarten. In addition, Jack was sick from the chemo and losing his hair. After the second round of chemo they learned that the tumors in Jack’s lungs were gone and the one in his liver had shrunk 50 percent, but it was wrapped around a main artery, and Jack needed a liver transplant. “I just wanted someone to tell me that he was going to be okay,” says Rachel, but no one could do that. Rachel and Ed learned that without the transplant surgery, Jack had only a ten percent chance of survival. With the surgery his survival rate went up to 85 or 90 percent.

Jack got on the transplant list on April 1, but there were indications that the cancer was spreading. Jack’s Alpha-Fetoprotein (AFP) numbers were going up. The AFP numbers serve as a marker for liver health. Normal levels are below ten; Jack’s had been 365,000. Doctors were unable to determine if and where the cancer was spreading, but if it was, it could jeopardize the transplant surgery. So, Jack was moved to emergency transplant status May 1. Rachel, Jack, Ed and Baby Sam had to be ready to leave for the transplant hospital at a moment’s notice. They had to have air transportation available, and arrangements for someone to care for Charlie. “We had to wear a beeper and be ready to leave at any time,” says Rachel, who adds that they were willing to jump through whatever hoops they had to or try just about anything to help Jack. “If they tell you to stand in the street and throw glitter in the air and sing a song, you’re going to do it four times a day,” she says.

On Mother’s Day that year Rachel remembers praying for a liver for Jack, but also being acutely aware that his liver would come from another child, and she grieved for the mother that would be losing her child. It was three days later, May 14, at 3 a.m. while she was nursing Sam, that they got the beep. They had a liver and had to leave immediately. Jack was prepped for surgery which went through the night and ended May 15. The doctors discovered that Jack’s AFP numbers had been correct; the tumor was growing, but it was contained to his liver so it did not affect the transplant. The surgery went very well. Jack was a perfect match to his donor, and they were home by June.

Jack Bell after his liver transplant, age 3

Jack, who turned three during his liver transplant recovery, recently celebrated being ten years cancer free. “Thankfully, he doesn’t remember much,” says Rachel adding that Jack does seem to be very in tune with his health for his age.“He does know a lot about his liver,” she says. Like other childhood cancer survivors, Jack will spend the rest of his life being monitored. Every two months he returns to the hospital for blood work. “I am constantly watching the AFP number,” says Rachel, who adds that after transplant surgery, Jack’s AFP went down to 12, and then to two, and that it has held at two ever since. He also takes immune suppressant medications to prevent his immune system from attacking and rejecting his liver, which has happened twice in the past decade. Jack also has a yearly cancer check that looks for late effects of the chemotherapy which are common among childhood cancer patients due to the effects of treatment on growing bodies. Rachel says that so far, any sign of late effects in Jack, which include some hearing loss, are minimal compared to what could have happened. Late effects can be physical, emotional, and/or cognitive and vary in degrees of severity. “It changes your whole attitude about what is important,” says Rachel.

In 2009, the Bell family welcomed their fourth child, Anna Kate. She is nine now. Sam is 10, and Charlie is 15. Even though Jack doesn’t remember much about his diagnosis and treatment, Rachel says it has definitely shaped who he is. Over the years Jack has become very close with his doctors and nurses and considers them part of his family. He even says that one day he’d like to be a doctor who specializes in the liver. “It’s important for these kids that survive to know how lucky they are,” says Rachel. “There will be a day he understands how serious it was and maybe he’s starting to realize that now.”

Coincidentally, while Jack was recovering from his transplant in May 2008, the United States Senate declared September 13 National Childhood Cancer Awareness Day. Later in 2012, September was made National Childhood Cancer Awareness Month. The proclamation states, “This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness.”

From left transplant surgeon, Dr. Frederick Ryckman, Survivor Jack Bell, Rachel Bell, and oncologist, Dr. Emad Salman. Rachel says, “I love any chance we get to be with these two docs!”


Sources:

https://www.cancer.gov/types/childhood-cancers

https://www.acco.org/childhood-cancer-awareness-month/

My Breast Cancer Story

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.

Family Member Profile: Alison Greenhill

Family-Member Profile
Alison Greenhill
Pancreatic Cancer

It’s been little more than a year since Alison Greenhill lost her husband Richard to pancreatic cancer. Richard was 47 at the time of his death and the couple had been married for 18 years. They had a tortoiseshell cat named Nibbles. Richard was a Registered Nurse and Alison worked for and continues to work for a major airline. Despite a history of Crohn’s disease, Richard was a generally healthy guy so when he started complaining of stomach pains in September 2016 he was referred to a gastroenterologist.

The couple had just returned home from a cruise and Richard’s stomach pains were severe enough to send him to the hospital, but all the test results done by the gastroenterologist were negative. The doctors didn’t know what was causing the pain, but it continued through December when Richard was diagnosed with chronic pancreatitis as a possible result of Crohn’s disease. Crohn’s is an inflammatory bowel disease that can cause abdominal pain and lead to a host of other issues so the diagnosis made sense.

But, in January Richard was back in the hospital with jaundice and he received a couple of stents to relieve bile duct blockage. He also had a number of tests done including an MRI and several lab and blood tests, but there still seemed to be no definitive answer as to what was causing Richard to be so sick. Alison recalls being frustrated that they still didn’t have more answers and says she felt like things were moving at a snail’s pace. Richard, she says, thought his symptoms indicated cancer, but on his birthday, also in January, they were told that Richard did not have cancer. “When they said it wasn’t cancer, it was his birthday,” says Alison. “We couldn’t have gotten better news.”

Ten days later Richard started vomiting and was back in the hospital with a blood infection. Alison says he recovered from the infection, but that it had almost killed him and that doctors were still saying they weren’t sure what was wrong. Finally, at the end of February Richard got referred to the Mayo clinic. Alison says they got there on a Thursday and by Friday evening the oncology department had been added to Richard’s daily report. Richard had stage four, pancreatic cancer that had metastasized. “It was the worst possible diagnosis with the worst possible cancer,” says Alison. “We were just numb.”

The Mayo Clinic oncologist suggested Richard start chemotherapy and referred him to a local oncologist who took over his case. Two weeks later, in March, he started chemo. During chemo, Alison says his numbers were going down, but Richard had a bowel blockage, another bout of jaundice, and an infection that interrupted his chemo. They learned that the tumor was covering his pancreas and he had another tumor on his liver. By the end of June he was in Hospice care. Richard remained positive through it all, says Alison. “My husband was like a rock. I don’t know how he did it,” she says adding that Richard made peace with his diagnosis. “We decided were were going to handle things the best we could.”

After his death, Alison says she had a lot of ups and downs and a lot of anger, but that, through Hospice, she got a grief counselor who helped her through each step of her grief. “She was wonderful from the beginning,” says Alison who focuses on remaining positive rather than letting herself get caught up in questioning why they were told Richard didn’t have cancer and why his cancer wasn’t found sooner. “I wish we would have known more. We didn’t know what we were working with,” says Alison, but she knows they did the best they could at the time. “I can’t keep going backward,” she says. “I would never be able to move forward.”

Along with the grief counselor and exercise, which she says helps her to stay positive and outgoing, Alison says she learned to accept help from others. “You have to let people do things for you. As time went on I realized I can’t do this by myself,” she says. Alison received a lot of help from her parents and had a strong support group. “Lean on your family. Let people help you,” she advises. Although it’s been difficult reaching each milestone or holiday throughout the year she says, “I’m better than I was a year ago.”

Now, Alison says it is important to her that others might benefit from what she and Richard went through. “I pray every day that no one else has to go through this,” she says. Richard also hoped his story might help others. “He said that he hoped one day we could help someone else,” she says. “He said people can learn from this.”

Alison wants people to hear her story and know they aren’t alone, but more importantly she wants people to do whatever it takes to get answers.“You’ve really got to speak up for the patient,” emphasizes Alison. “If you don’t have the answers and the doctors don’t give you the answers, don’t take no for an answer. Take it to the next level.” Alison says that patients and caregivers shouldn’t be afraid to ask questions and to push for more information. She says, “Keep fighting for your person.”

Patient Profile: Peter Blaze Corcoran

Patient Profile

Peter Blaze Corcoran

June is National Men’s Health Month. This month’s patient profile emphasizes the importance of continuing to explore options for maintaining optimum health after diagnosis, treatment, and recovery.

Peter Blaze Corcoran concedes that there is never a good time to get a stage four cancer diagnosis, but he says his diagnosis came at a time in his life when he felt secure in managing it. It was 2015 and he was a university professor nearing retirement. He had insurance, a supportive employer, and access to excellent medical care. “It came at a time when I was mature enough, secure enough, and knowledgeable enough,” says Peter. “I felt quite stable in dealing with it.” It was prostate cancer, a particularly aggressive form that was not confined to the prostate. Treatment required a radical prostatectomy and several months of radiation. During treatment doctor’s discovered a second cancer, liposarcoma, but fortunately it is non-threatening to date.

During his treatment, Peter was able to continue working part time which he says helped with his recovery. “It was a bit of a life line being able to work during treatment,” he says. “Work is so central to one’s identity.” The diversion of work meant Peter was able to maintain his pre-diagnosis identity. “I was not a cancer patient, but a professor who was still writing and administering.” It was important to him to maintain that persona because his goal was to return to the classroom, finish his career, and to be able to “go out on top” rather than retire early due to cancer. “The goal was to get back in the classroom, to teach again, and do another book and be involved in the university,” he says. “Which I was blessed to do.”

Peter retired this year and while he does have some health difficulties as a result of his cancer and treatment, he now hasno evidence of disease (NED). He also has some other lasting effects from his experience. “I think I’m on a different path than I would have been without the cancer,” he says. “Cancer is an effective teacher.” Peter says he hopes he has learned to be more compassionate, empathetic, and more humble, and that he has developed a deeper gratitude for life. Cancer has been a source of spiritual development for Peter and he says it has brought him into what he calls a sacred space. “A diagnosis this serious is a wake up call to deeper questions.” says Peter who used his experience as a means to address life’s bigger questions, including questions about his own mortality and about the amount of suffering in the world. He also tackled the “why me” and “will it come back” questions, and in the answers he found what he calls a turning point. “I wanted to craft a life that diminishes the chance for cancer to return,” he says.

To do that, Peter turned to the Commonweal Cancer Help Program (CCHP). The program is a week long retreat for cancer patients in Bolinas, California. Patients can attend the retreat at any stage of their illness, but must be under a doctor’s care and able to care for themselves during the remote retreat. Each retreat is open to 8 or 9 participants at a time and focuses on integrative healing techniques. Peter says treatments include music, art therapy, qi gong, individual and group therapy, traditional Chinese medicine, massage, exercise, and nutrition. “Commonweal helps you integrate treatments and the importance of good nutrition,” he says. Patients develop a practice of intentional healing and Peter says it is a great opportunity for insight into your own cancer. While the program is expensive, Peter says there is a scholarship program. “Many people who’ve been there have made it possible for others to go,” he says. While Peter recognizes that Commonweal’s broad-minded approach may not be in some people’s comfort zone, he says that one of the lessons he learned from having cancer was to say yes to all forms of healing. He says that he had the best of western medicine and he’s grateful for that, but that he continues to be open to a variety of modalities and methodologies that can help him. “What distinguishes Commonweal is that they have analyzed and studied all methodologies that have helped people,” he says. “I feel as though it’s really helped me make a turn for the better in my life.” Peter adds that the program empowers patients to care of themselves. “You set your intention,” he says. “The power comes from setting your intention.”

A career educator, Peter moves forward with the intention of teaching others the lessons he’s learned. He’s very thoughtful about what he wants to share and he emphasizes the importance of his faith community to him and how comforting it was to him to know that people were praying for him and his healing. “My faith community was extraordinarily important in my recovery,” he says and credits being open to the power of prayer in his healing process. Peter encourages others to be open to a variety of healing, too. “It’s good to say yes and stay open to all possible ways of healing whether it takes you out of your comfort zone or not,” he says. Another thing Peter says to say yes to is a buddy. “It’s important to have a cancer buddy,” he says. Find someone who has been through cancer and can give you advice and can help you through the process. He credits his cancer buddy for helping him to be open to the opportunities that cancer might bring. She told him that if anyone should ever mention the word cancer to him, he should stop and pay attention. “Listen for the opportunity to help others,” he says.

You can learn more about the Commonweal Cancer Help Program at commonweal.org.