Day 17 Time to share

Take one daily 

As we approach mid-treatment time, we have been blessed with family and friends gifting us with wonderful treats of dinner's out, Uber Eats, care packages FULL of amazing and thought-out gifts and useful oncological lotions and potions, real fruit arrangements, and so many well wishes from everyone. The calls, the texts, and checking in on us is so very much appreciated. As always dear friends, our deepest gratitude for standing by us through our journey. Words will never be able to express our love and appreciation for YOU being there. We are honored.

It's about this time of our journey to turn the spotlight from ourselves, and shine it on other cancer survivors who have/had Head and Neck cancers, who are not only thriving afterwards but shining bright. I'd like to share their stories today. I do not know them, but know they have also blogged and posted their own stories. I find myself consumed in their words and thoughts. We are all so different, yet the same, and their stories made me smile. 

Valerie’s Story

Living My Life

To recap my story (published in the SPOHNC newsletter, Summer 2005) during the Christmas season of 1998, whilst decking the halls, and hanging the balls, I felt an olive sized lump in my neck. For the next three months, as I came down with various infections, four different ENT doctors misdiagnosed me. But the ever-present lump made me nervous, and I finally saw an ENT surgeon, specializing in Head & Neck diseases. After a biopsy he told me, what I never expected to hear” “I’m sorry, but you have stage III, squamous cell carcinoma of the right tonsil”--Whaaaaat! How could that be? I didn’t smoke, or drink.

The novel writers clichés about going numb, actually exists. After the word cancer, I did not hear another word my surgeon said. He prescribed two surgeries, then radiation. Within a week I was admitted for my first surgery, which was a radical tonsillectomy, including half of my palette. Painful as it was, he wasn’t finished with me. Ten days later, I was readmitted for a neck dissection. The admitting lady said, ‘”Haven’t I seen you before?” I said, “Yes, I was here for surgery ten days ago, and I liked it so much I came back for more!” Next, I had my radiation-field teeth extracted. After six weeks of recuperation, and feeling better, I started radiation. Fourteen years ago, the more sophisticated technology of today did not exist. They strapped me on a table, tattooed me, and radiated everything within a hundred miles around my head.

Head & neck cancer radiation is daunting, to say the least. Unlike other parts of your body, it severely affects your essential daily luxuries, like eating, breathing, sleeping, etc. There’s supposed to be about a two-week grace period before you feel the side effects from radiation. However, I’m such a petite, dainty flower that after the first few days, I started to feel some mild symptoms. And, it was downhill from there. My radiation schedule was interrupted twice. I became dehydrated because I couldn’t even swallow water, and needed re-hydrating” like a dried mushroom. Later, I developed a blood clot in my leg, probably associated with inactivity and the steroids prescribed to address the inflammation. The cessation of treatment made me nervous, but my doctor assured me that it would not affect eradication of the tumor. I point these things out not to scare you, because everyone tolerates radiation differently, but to illustrate the need to be aware of what your body is telling you, and to be sure to inform your doctors of any problems.

Guided imagery helped me with relaxation, and every day, when the radiation beams were shooting into me, I imagined a Star Trek machine zapping the cancer cells until they exploded. I know that attitude, and humor is so important in life and recovery. Going through treatment, I watched all the funny old sitcoms, and movies I could find. I was too fatigued to laugh out loud, but I knew that laughing in my mind was just as therapeutic.

The popular phrase “Radiation is the gift that keeps on giving” is so true. As soon as they finish treatment, patients expect that they will bounce back to normal. Unfortunately, it’s a slow recovery. For about three months after finishing treatment, I was down for the count with fatigue, burning tissues, and eating problems. With a weight loss of 23 pounds, I was indeed a shadow of my former self. At that time, feeding tubes were not standard, and my doctor did not like the possible infections associated with them. He also knew that I was well-informed about the importance of healthy nutrition.

It seemed as though all of a sudden, from one week to the next, the fatigue lifted like a veil, and I gained back most of my old energy. I started exercising again, and although I grew stronger, that’s when I lost the last six pounds, because my throat still hurt, and I wasn’t eating enough calories to gain. I lived on my neighbor’s lovely organic eggs, any moist, pureed food I could get down, and my own recipe for nutrition-dense milkshakes. (Page 11 in the SPOHNC cookbook)

I think I continued to heal slowly for about four years. I still do not have the normal saliva I had before radiation, however there are prescriptions, and over the counter products that do help with that. Acupuncture for dry mouth helped me tremendously. Dental issues were not a problem until recently, when my teeth started to chip and break. Occasional neck stiffness bugs me, and I sometimes have trouble swallowing, but overall the “new normal” makes for a happy life. I have become “The Buffet Queen”. I eat anything that’s not nailed down, with the exception of dry foods. I gained back ten pounds, and have the girlish figure I had in my twenties(except for gravity, but that’s another sad story).

Going through treatment I vowed that if I lived through it, I would help those having to endure the same journey, so, in 2000, I started the San Diego Chapter of SPOHNC. My group started small, and sputtered along until my efforts at spreading the word started getting results. I ran ads in everything, exhibited at every cancer-related event I could get to, designed and made SPOHNC brochures for the local chapter, and ran around San Diego distributing to anyone, who would listen. We now meet every first Saturday at noon. The only oral, head and neck cancer support group in San Diego is now thriving.

I run an upbeat support group. I start every meeting with a clean joke. One time I forgot to tell a joke, and someone said, “Hey, you can’t start yet. You haven’t told one of your terrible jokes.” Laughter may not be the best medicine, but it sure comes close. I tease new patients, “Geesh, you guys today have it easy. When I went through treatment, I had no mask, no feeding tube, no therapy, no support group.”

My regulars chime in and say, “Yeah, yeah, we know, and you had to walk ten miles each way in the San Diego snow to get to treatment!” Even people, who are anxious, and in pain, laugh with us.
As well as educating patients, I book relevant speakers for the group. Most professionals I approach are generous in taking time from their busy schedules to come and talk to us. We have had nurses, ENT doctors, radiation/oncologists, cyber knife experts, social workers, patient advocates, therapists, psychologists, dietitians, nutritionists, life coaches, acupuncturist, etc. I recently sent a translated version of a SPOHNC newsletter to a prominent medical contact in Mexico.

I am a volunteer for SPOHNC’s National Survivor Volunteer Network, which matches survivors with anyone needing help or advice. It’s very rewarding to talk with someone who is nervous anxious, or downright scared, and encourage them through the long, dark tunnel of treatment, and see them come out at the other end, hopefully smiling. I tell everyone the Big C stands not for cancer but for COURAGE.

Of course, there are dark moments, when sadly we lose someone. That’s very hard, and brings home the gift of being a survivor. Treatment modalities for oral, head and neck cancer have come a long way, and due to the rise in oral, head and neck cancer patients, more research is being done. The future holds the promise of hope, for oral, head and neck cancer patients.

I wish you all well.

And then there's......

Garry Fielding’s Story

Faith, Family, and The Desire to Heal

So how did I get here? Early in 2009, I had not too long before celebrated my 30th birthday with friends and family. I began having pain in my upper teeth that radiated through my face. Thinking that I might have a cavity or something, I went to see my dentist. He told me that I had a sinus infection and that I should take some antibiotics. He also said that my gums seemed a little soft which was probably nothing but that I should follow up on it. I decided to contact my primary care physician for a follow up and he essentially said the same thing, “sinus infection.” He prescribed two different types of antibiotics and sent me on my way.

Now I didn’t think there was anything strange about any of this because I had at least one sinus infection a year and this was a normal thing for me. But this time was different…the pain eventually lessened, but did not completely go away. In addition to the dull pain, I noticed a lump in the upper part of my gums. I went back to the PCP and he suggested that I have a CT Scan. I still remember sitting in that room waiting for my scans not knowing that my life was about to change forever. After completing the CT and the doctor getting the results, he wanted me to immediately see an ENT specialist. He couldn’t tell me much except that he had some concerns about what he saw in the CT scan and I needed to see a specialist. I met with an ENT and he let me know that my scans showed my right maxillary sinus completely full of some mass. He wasn’t sure exactly what but it was clear that it could be serious. He ordered a surgical biopsy to find out more details.

On Thursday June 4th, 2009, I had a surgical biopsy done on my right and left maxillary sinuses. After doing the surgery, the surgeon felt pretty confident that it was something other than cancer. At least that was his initial response. We waited through the weekend to get the actual results but were pretty positive because of the optimism of the doctor.

On Monday, June 8th, my life changed forever. The doctor called my wife with horrible news. I will never forget that day standing in the middle of a department store seeing my wife mouth the words “cancer” to me. I was in shock; I took the phone from her so I could talk to the doctor myself. He told me that they found squamous cell cancer cells in my right maxillary sinus. The cancer was so aggressive that it had gone through my palate and started to protrude out of my gums. We were so confused and distraught. We left everything in the store, grabbed our 2 year old and went to the car. We just sat in the parking lot of that department store, crying. That’s all we could do in that moment.

All I was thinking was how could I, a healthy non-smoking 30 year old male in good physical shape, have cancer? And sinus cancer at that – something I had never even heard of.

After we collected ourselves, we immediately called family and friends to let them know what was going on. Some of our closest friends came over within hours just to sit and pray with us. Although I was scared and unsure of what the future would bring, there was this small bit of internal faith that I had, that told me everything was going to be ok and that I was going to get through this. I flash backed to a guy I heard on the radio earlier that year who was in the sports world and fighting cancer. I remember thinking; wow this guy is so positive and upbeat about his experience even though it’s extremely hard. I said to myself, if I ever had to go through something like that, that’s how I would want to do it. Little did I know, that thought was going to be challenged the same year.

Fast forward to treatment. After meeting with a series of doctors, I landed with the right team that I needed at that time. They came up with a plan of treatment and we moved forward. I had major surgery – a right maxillectomy and neck dissection to remove the cancer and any possible impacted lymph nodes. Then all within the same surgery they did a fibula free flap replacement using the bone in my leg to craft a new jawbone and tissue from my leg to create a new palate. I was in surgery for almost 12 hours! After the surgery I endured 3 months of chemo and radiation. I had two different types of chemo weekly and radiation every weekday. I continued the treatment until I could no longer carry on because the chemo was so strong that it was causing me to lose my hearing. My doctors wanted me to go for the strongest course of treatment because I was young and they wanted to be sure there was no cancer remaining in my body.

The treatment was one of the hardest things I’ve ever done in my life. I lost my sense of taste for a while, I had sores and breakouts in my mouth, throat and on my face. I could no longer eat because of the pain and had to be put on a feeding tube for nutrition. I was tired all the time and just felt bad most of the time. Because of the surgery, I lost the feeling in my upper lip and part of my face. My nose would drain sometimes and I didn’t even know it. I was often embarrassed about my appearance but I was determined that I would not stop living my life. So, I went on with my family and my life as if things were normal even though I knew I looked horrible.

As I was going through all of this, my beautiful wife was busy trying to take care of me, a two-year-old and keep herself healthy given that she was pregnant. She started to have complications while I was going through my treatments. At one time, we were both in the hospital at the same time on different sides of town.

What got me through all of this? My faith, my desire to see my children grow up with a father, and the support of my family and friends. I’ve always had a strong sense of purpose and I just believed from beginning to end that there was more for me to do on this earth and it wasn’t my time yet. Despite what I felt I looked like, my wife was always there to love and encourage me, which really gave me strength. We had a lot of help from family, friends and church members to help us get through this. We couldn’t have done it without them.

Two weeks after my last treatment my wife gave birth to our second daughter, Zoe, which means life. I struggled getting back and forth to the hospital and taking care of her but I did it and I have not looked back since then.

What is life like now? Now I’m 8 years cancer free and my face has healed. I don’t look exactly like myself before cancer but it’s close. People are still shocked to hear how much I went through because they don’t see that in my face, which I think, is a good thing. My smile is distorted and I have a big indention in my cheek due to the missing tissue. I’ve tried a few cosmetic surgeries to improve the appearance and it has progressively gotten better but still not exactly where I want it. My biggest struggle today is the limited opening of my mouth (15 mm to be exact). It causes me issues with eating and replacing my missing tooth. Every dentist or prosthodontist I see struggles with helping me in this area.

Other than these cosmetic things, I’ve carried on with my life and do everything else that I want to do. I now have 3 beautiful daughters. I’ve progressed in my career in executive management and I’ve become a 1st degree black belt in Tae Kwan Do. All in all life is good and I am extremely grateful every year that I see.

My perspective is very different now; I never take time or my purpose for granted. I always try to remember that things could have gone the other way. If you ever doubt whether or not you can make it through the most difficult of circumstances, don’t doubt yourself, because through faith, you can.

Garry Fielding

As David moves through his own radiation and chemo, we are privileged to do so here at MDA. The outcomes (after the treatments are completed in late February) are certainly unknown and uncertain, but what we do know is that we blessed beyond our own belief, and trust in the good Lord that all will be as it is destined to be. His Will be done. We are here for it. All of it. 

He’s certainly trying

All good, all the time,

Cyndi