Sharing Stories


GENE MONAHAN'S STORY

dennis Editors Note: Gene Monahan, oral cancer survivor and retired Head Athletic Trainer for the New York Yankees was the Guest of Honor at SPOHNC’s 20th Anniversary Conference and Celebration of Life. He is pictured here with SPOHNC Board member Gail Fass, and Larry Caputo, husband of SPOHNC Executive Director, Mary Ann Caputo, in a photo taken at the conference.

People are reluctant to inquire as to certain subject matter such as, “Where are you with your illness, how do you feel?, how is your journey progressing, and what is your prognosis today”? Not only that, but the impacting and scary term “cancer” is seldom spoken when in these situations. Patients, loved ones, and adjacent caretakers are all included in this roster.

So, there it began with me, simply shaving in the early morning on a baseball road trip to Minneapolis that I discovered a small lymph node distended in my right neck area. Four months later I decided to be a bit more aggressive, a rather ridiculous period of medical denial, and received the news very quickly, Squamous Cell Carcinoma.

Upon the diagnosis at New York Presbyterian Hospital through my astute team physician internal medicine specialist, Dr. Paul Lee, I immediately pursued an immediate plan of treatment with a doctor who literally saved my life with his expertise, formula, and dexterity. Dr. Dennis Kraus, then affiliated with Sloan Kettering Memorial Cancer Medical Center mapped out a plan of surgery and radiation with words that I shall never forget when I inquired about my chances of surviving. He simply said, time and time again whenever I was apprehensive, “We play to win”.

Then it was time for education, preparation, and anxiety, associated with the inherent surgery, recovery, and all that will follow. People from across the country reached out in hopes of assuring and preparing me for what was approaching. Friends, colleagues, strangers, all who had lived this experience were nothing short of amazing in their honest and forthright approach. I was told frankly that this was to become the most miserable time of my life, ever. No punches were pulled, no sugar-coating, I was prepared. Or……was I?

There was little fear of the surgery. That was described in detail and proceeded very well. Immediate recovery was tough, both tonsils were removed, a genius move via Dr. Kraus, as I had cancer in both tonsils, a rarity. The weakness and lack of appetite and ability to eat was overwhelming, and through my insistence emotionally to resist the notion, I did not experience the feeding tube. Thus began the weeks and weeks of power shakes and supplementing as best as I could manage, it was miserable. There were six weeks to wait and recover until the radiation was to commence.

“Orientation” and the ensuing thirty treatments in six weeks teach you much about yourself. There is a will-power we all have that I know is basically untouched. It takes times such as these to truly tap into what we truly are all about! For whatever reasons, I strongly desired and saw it through to travel to my treatments essentially by myself with my own thoughts. The mask, the treatment sessions, the crossing off of the days on the calendar, and my fellow “patients” all served me well. There was a unique peace during the actual sessions with the machine rattling, not sure what that was about, but I know the joy of the session being complete and hearing the feet of the “team” re-entering the room, was always a joyous event and made my drive home rewarding. I could go home and cross off another day. That 30th day seemed years away.

The course of radiation left me very weak and without an appetite at all, and as predicted, the REAL tough effects of radiation set in approximately two weeks after completion. One of the best medicines during this time was my desire and fulfillment in returning to some work, albeit for only three or four hours per day, while my Yankee team was at home. When I did begin to travel, I know it was too early, but the work and having my friends/associates back was great medicine. I struggled with nutrition very much, especially on the road.

I am presently two years and four months removed from my radiation and I continue to struggle somewhat with my appetite and my food, but patience and common sense help. The follow-up visits with my doctor and oncologist physician still are a bit scary, I’m definitely not a fan of the endoscope, but I shall always remember, “We play to win”. Constant sinus drainage, chest congestion, dry mouth, and an occasional sore throat concern me at times, but I manage these things and continue my life in retirement. I learned early on, as my illness sealed my intention to retire soon anyway, that I needed a bit of an obligation, a place to go to work for a bit, and I was able to fulfill that with a bit of a part-time obligation, inherent with my previous career. For this I am most grateful, as I was lingering with apparent sadness and depression with my plight.

Paying strict attention to the educational process of this cancer journey helped me immensely. The throat rinses, the burn creams, nutrition guidelines, rest protocols, exercise regiments, physical therapy, and emotional open-door policies, were of tremendous help in retrospect. Anyone in this cancer journey benefits so much for permitting friends, family, loved ones from all over, into their lives, not as anything less than an intricate aspect of their own special “team”.

Am I a fighter? I don’t honestly think so. I feel you need to be really mad to be a good fighter and I was not so mad as I was disappointed, deeply concerned, and just simply “out there” by myself. There really isn’t time to be truly scared and to worry excessively. The time during this journey of overcoming and healing needs to be spent on positive and enriching thoughts of what tomorrow may bring.

My answer is to become involved, with what I have, and that is my life, my relationships, my work, some fun, my new pickup truck that my team gave me, and my dog Brady. I have Liz and Brady, and my kids, and this brings me peace and the will to improve and help the other folks in their journey.

Gene Monahan

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A JOURNEY OF COURAGE

dennisMy husband Mel was diagnosed with squamous cell nasal cancer in May of 2001. Side open surgery of his nose was done, where they cut the nose down the side, and removed all cancer found. The nose was then stitched back up on the side and a month of healing occurred before following up with radiation therapy. When more cancer was detected he had a rhinectomy (removal of the entire nose) in April of 2003. Mel also lost part of his upper lip due to the spread of cancer cells from wiping a bloody nose. The bloody nose was the only symptom Mel had prior to being diagnosed with nasal cancer.

When Mel returned home after his surgery, both the patient, and the caregiver began the long journey of recovery. Mel was a wonderful patient, and I learned quickly about the role of caregiver. I was told that I must change his bandage every day and clean the stitches. Proceeding like a caregiver who knew what she was doing, I began the first days of what became known as home care.

The first time I had to change the bandage, I was scared to death, as the bandage would not come off, Thinking on my feet, I soaked an entire gauze pad in the saline solution we were supposed to use to keep the area clean. The gauze pad which literally stuck to his face. Worried about how this was going to work out, I told him I had to go do something, and let it set for several minutes. I told him to just rest on the bed, and that I’d be right back. Thankfully, by the time I got back, the gauze came off nicely. I soon placed a call to the surgeon’s nurse, who became my lifeline. After explaining to her what had happened with the first bandage change, she told me go out and get some non-stick bandages and some paper tape. Mel never knew it, but I’d come close to not changing any more bandages, after that first experience.

I had covered all the mirrors in the house until Mel was ready to look at his face. It was several weeks, but when he was ready, he simply asked for a mirror. I left the room to get some supplies, giving him the private time he needed, to check out the surgery done. Once he was ready, he began to remove the newspapers from the mirrors and within three months, Mel was doing his own home care. I was very relieved, since I had crashed and burned, ending up with shingles on my right leg, which were caused by all of the stress of the surgery, caregiving and all of the emotions we were both dealing with during this most difficult time.

I never let Mel feel any different after his surgery. I would kiss each side of each cheek just before we would begin home care. He seemed to like it and I think it helped him accept what had happened and in all honesty, it helped me as caregiver. Being a caregiver can be very stressful and hard but one never knows how much strength one has until tested. Little did we know the day we went back after the first biopsy, we would hear the words nasal cancer. When the doctor realized I’d seen the diagnosis he looked at me - reading the words upside down wasn’t hard. He probably thought, oh she knows, now I have to turn around and tell her husband. Dr. DiNardo and Mel became friends and still are, to this very day.

Mel lost all of his upper teeth due to infection caused by radiation damage. He then developed a fistula (hole) in his upper pallet into the nasal cavity. A lead mouth shield was made for Mel when his gums began to bleed, but by then, it was too late. He only had one more week of radiation therapy. So many questions about his treatment plan started to come to light. We began to wonder - if we had gotten the shield before starting radiation therapy would Mel still have his top teeth?

We were then given the choice of having all the upper teeth removed or just the one or two where the infection was. He would undergo HBO (hyperbaric oxygen) treatments to help with wound healing. They say that hindsight is 20/20 vision. We now question and wonder if we had to do over again what we would decide to do. If only we’d known some of the things we know now, prior to radiation treatments, the outcome for his upper teeth and fistula may have been very different. The knowledge we now possess we feel can be shared with others.

The fistula caused major problems because food would sometimes find its way through this hole into his nasal cavity causing Mel to choke. An upper plate with an obturator to plug the hole was quickly made so that he could eat without choking.

Mel was eventually sent to have a prosthetic nose made. Despite the glue used, the prosthesis would fall off every time he would try to wear it. This was quite frustrating because he could not “feel” when it came loose, so I kept a watchful eye. Eventually, feeling like there were no other options, Mel resigned himself to wearing the bandage and mask.

Mel became quite well know in the community. His co-workers looked at him in awe of his courage to go on about the business of daily living. We have complete strangers waving at us all the time. Employees and customers in Wal-Mart approach Mel quite frequently and I constantly find him chatting with strangers about someone they know, or sometimes even themselves, battling cancer. He’s very approachable in this aspect. Mel’s journey has been a long one, and despite the physical changes to his face, he is probably one of the most carefree people I know – and this is only part of Mel’s awe inspiring story to regain his face and his normal life, as it was before cancer.

When we met Dr. Karen McAndrew she was just newly beginning her practice and we went to chat with her about getting a different kind of prosthetic made using a magnet. Dr. McAndrew said she wondered why a mold of the patient’s nose wasn’t made prior to removal for patients like Mel. It made perfect sense – things would have been much easier and she certainly had a very good point. She did however. make a prosthetic nose that would stay on if Mel jumped out of an airplane! It was truly amazing. I got to sit in on the entire procedure, beginning with the doctor (Dr. Zoghby) who embedded the abutment between Mel’s eyebrows, to the making of the nose mold by Dr. McAndrew. I carried my pen, paper and trusty camera to document it all.

Since Mel lost part of his upper lip due to cancer, Dr. McAndrew suggested that we check around to see if we could find someone to root some hair in the space just below the nose, to cover the fact that he’d lost part of his upper lip. What a great idea!

I must have sent out more than 100 emails, trying to find someone to help us, and eventually, the most amazing thing happened. Coming back from lunch one day, I checked my email and found a reply from Tina Amatula in California from dollyhairmail.com. She had also left me a very lengthy voicemail telling me that she was a thoroughly qualified artist and could do this for Mel. She also wanted to do it for free.

I emailed her back and we eventually sent the prosthesis to California. Within a week it was back, and fully rooted with a moustache. She even rooted some hair into the nostrils, to make it look even more realistic.

Tina is a very talented, determined, sweet lady, and she did not stop there. Since she was a professional artist, she pleaded with us to allow her to make Mel a soft prosthesis using Dr. McAndrew’s mold. She also wanted to do this free of charge. She would need permission to use Dr. McAndrew’s mold, and she needed lots of photos of Mel taken before his cancer and removal of his nose. She was practically begging us to let her do it. This was a challenge for Tina, so we asked Dr. McAndrew what she thought. Her response was “Go for it, what can it hurt to have extras?”

We sent Tina the extra mold. During the next year, we emailed back and forth and she shipped us some samples she made. We photographed them on Mel and mail them back to Tina for adjustments as needed. Many photos were sent via e-mail, so she could see the fit, and the color as well. It was looking really good. We still don’t know how she did it but she captured Mel’s nose as it was before he had it removed. This is why Dr. McAndrew felt that surgeons should have the patient get a mold of their nose or part of the face that is to be removed, prior to surgery. This makes it easier for them to put the patient back together. With no mold, it’s guesswork.

Mel also grew his beard out three inches as Tina had requested, and sent off the facial hair to her in California. She rooted a moustache using his facial hair and put some in the nostrils and sent it back to us. The moustache would hide the fact that he had lost his upper lip to cancer as well. We were thrilled with the results, despite one problem. The magnet was pushing the prosthesis away from Mel’s face, because it was in at the wrong angle.

After it sat in a box for three months, we called Dr. McAndrew to see if she could help. She was apprehensive because removing the magnet could ruin the entire prosthesis. I told her it did not matter - it would sit in the box looking good, or we could try to fix it. She graciously agreed, and with the help of one of her staff, she was able to fix the problem – also all free of charge, just as with Tina, our new artist friend. I am here to tell you there is much kindness in this world indeed.

Between these two amazing ladies Mel has his face back and no one even notices that his nose is a prosthesis. We go out to eat, he wears his glasses and sunglasses, and we can attend weddings without fear of taking attention away from the bride. We attended a wedding in July 2011 - something we did not do before. After leaving the wedding, we went to Outback for dinner. Before the prosthetic, we just turned down invitations to everything.

In early 2011 Mel developed hypothyroidism, as a side effect of the radiation treatments. He’s now on thyroid medication and doing very well.

Having gone through this journey as caregiver, I found comfort in writing and have written a Caregiver Booklet, which is available to anyone who asks for a copy. We also have found that volunteering through SPOHNC, as members of their National Survivor Volunteer Network(the patient/caregiver match program) not only helps others but helps us as well. We wish we’d had someone who had already gone through this journey, with all its twists and turns, when Mel got his diagnosis. We now realize that some decisions we made early on may have been different, had we had all the knowledge that we now possess. We hope to be able to help others in the early stages of their diagnosis and make a difference.

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DENNIS STAROPOLI'S STORY

dennis“I wish I had better news for you”. That brief statement from my ENT physician back in August of 2001 is still as clear in my head as the day I heard it.

“The needle biopsy showed a malignancy”. Malignancy?…cancer?…I thought this must be a mistake…my biopsy must have gotten switched with some other…how could this be?
And so began the roller coaster of emotions which all cancer patients feel when first diagnosed. First disbelief…then confusion… and anger and frustration.

My story actually began about six years before that conversation with my doctor. I had discovered what felt like a small cyst on the left side of my neck. My primary care doctor referred me to the ENT specialist, who sent me for a CAT scan and decided we would keep an eye on it…there was nothing extraordinary about it at that point. After another check or two in the following months, I basically forgot about the small lump…and it never bothered me, until the summer of 2001 when I realized that it had gotten larger. That’s when the ENT doctor took the biopsy. The official diagnosis was squamous cell carcinoma of the neck.

I was referred to another specialist, an ENT/Head & Neck surgeon at Long Island Jewish Medical Center, who explained what needed to be done…surgery, specifically a neck dissection, followed by radiation…the experience was becoming more frightening…would I be deformed by the surgery? What further damage would the radiation cause? And what if I refused to have the radiation done? Once again, many emotions and fears swirled inside my head. The operation was scheduled for September 19, 2001, and while I was waiting for the days to pass, and becoming more apprehensive, September 11 happened, and everything was suddenly put into perspective. The emotions I felt on September 11 seemed to diminish the significance of my upcoming surgery…I was not as worried about myself anymore.

The roller coaster continued. The surgery turned out to be longer and more complicated than anticipated, due to widespread lymph node involvement in my neck. It took 5 and ½ hours to clean up the area and take sufficient biopsy samples. In addition, the cancer had enveloped two of the cranial nerves on the left side, so those had to be sacrificed. The jugular vein on the left side of my neck was completely collapsed and lost, and the carotid artery was enveloped by the malignancy as well. A very aggressive Stage 4 cancer. Luckily, a vascular surgeon was able to “peel away” the cancer and save the carotid. All pretty heavy duty stuff…unbeknownst to me, the surgeon was concerned about my future abilities, in particular, swallowing.

But before this story becomes too depressing let me tell about some good news: The cancer, although aggressive, seems to have been confined to the neck area…no distant metastases have ever appeared on scans or in fact. My voice, which was all but lost because of the paralysis of my left vocal cord, has returned.

My swallowing reflex has been almost perfect…I thank goodness for all of these “small favors”.

Unfortunately, along came radiation treatments, a necessary “evil” to insure that the malignancy would not return. I began the first of 37 treatments in March of 2002, at Stony Brook University Hospital. The physician and nursing staffs there, as at LIJ, were wonderful throughout my treatments…extremely dedicated and caring individuals who made it all bearable. I tried receiving amifostine to protect the salivary glands from radiation damage, but after three weeks of nausea I decided to continue the treatments without that drug. Newer protocols call for good hydration by drinking a fair amount of water before each of the amifostine treatments, and this helps to reduce the nausea. I still have a diminished amount of saliva, but the dry mouth has improved over time. The sense of taste which I lost after the treatments, has returned completely. Which brings to mind a quote from a physician on a teleconference on head and neck cancer a couple of years ago. She repeated the words to a famous song…”Don’t it always seem to go, that you don’t know what you’ve got ‘til it’s gone”. If there is any good news from the cancer experience, for me it is the renewed perspective on all of the things about our body which we take for granted. Prior to my cancer, I was healthy but did not appreciate that good health the way I do now. I realize that it is not an “entitlement”, but rather a gift…a person is very fortunate to have it.

What is so important in all of the recovery from surgery and radiation is patience. The improvements are not dramatic…rather, they are incremental, in baby steps, and slowly there is a realization that we have a “new normal”.

And thanks to SPOHNC, the future is seeming even better. In addition to the volunteer help I provide by phone to newly diagnosed patients, I have begun plans to organize a support group for Suffolk County, NY, which is the Eastern part of Long Island. This would be adjacent to the group in Nassau County, the Western half of Long Island…this is the group run by Nancy Leupold, SPOHNC’s original founder. Because Long Island is so “long”, 120 miles to be exact, there is a need for a support group for the many patients living in the Eastern half. I am excited about this new opportunity to help others with head and neck cancer, just as SPOHNC has helped me for the past five years. And finally, of course, I have had the privilege of being asked by SPOHNC to tell the story you have just read. I hope that the fact that I’ve come through all of this with positive results and feeling good about the future, will give other survivors the hope they’ll need to get through their own ordeals. I wish you all well.

Dennis Staropoli

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HELENE MANGONE'S STORY

dennisA TIME FOR SHARING... My Cancer Journal: 2009

On March 09, 2009, as I was washing my hands in front of the ladies room mirror at work, I yawned and suddenly I noticed a growth on the left side of my tongue. I made an appointment with an Ear, Nose, and Throat doctor (ENT) for the next day. As soon as the doctor saw the growth he felt that it needed to be looked at by a specialist because he, “had never seen this type of growth before and this might be one for the books.” He told me, “You could be a case study.”
At that point, I just viewed the strange growth as an inconvenience that was interrupting my busy work schedule.

Timing Is Everything
I was able to get an appointment with the specialist on March 19th. In the meantime, the thing in my mouth was growing rapidly. When I saw the specialist, he originally felt that this was probably a pyogenic granuloma, which is a common, benign growth, but he biopsied it to confirm his diagnosis. I was still thinking: one ambulatory surgery and I would be back at work; no real changes to my life. I had never smoked, abused alcohol, chewed tobacco, or been exposed to secondhand smoke. Since neither my parents nor my husband ever smoked, I had no reason to suspect the growth could be something else. The growth was atypical in many ways. It grew rapidly, getting bigger and bigger each day and the tip was showing signs of necrosis, or tissue death. It was not adhering to my tongue but rather growing parallel to it. It was getting so big that I was joking with my son-in-law that he better watch it since I was becoming “the mother-in-law with the forked tongue!”

By March 27th it was becoming difficult for me to eat, my speech was affected, and swallowing was difficult as well. The extraction was scheduled for March 30th as an outpatient procedure, and my family and I were becoming concerned because the pathology results continued to be inconclusive. As I was waiting to be wheeled into the operating room, I was told that the pathologist saw traces of cancer but so far had been unable to determine what type of cancer. Without an exact cancer diagnosis, my surgeon did not feel it was prudent to remove the growth. Since I was already prepped for surgery, a tracheotomy was done because the growth was starting to affect my breathing. And I would need it once I had the extraction. So there I was, sitting in the pre-op room believing that I had a noncancerous growth, that I was going to have a procedure, go home after a few hours, and get back to my life.

Suddenly, I had to deal with the shock of being diagnosed with cancer, still not knowing which type, and with having a tracheostomy. My first thoughts were, “this cannot be happening to me!” I felt like putting my head down and crying but realized that would mean I was giving into the disease. Luckily, my oldest daughter (“the doctor”), who is a neonatologist and my medical advocate, was with me. She maintained her calm demeanor and advised me to agree to the tracheostomy. I had to trust her, after all her father and I had invested thousands of dollars in her education! While inserting the tracheotomy, my surgeon decided to remove about two-thirds of the tumor (it was no longer a growth!) to facilitate my eating and breathing. Also, he would have additional tissue samples to send to the pathologist for testing. I stayed at the hospital for 5 days and the pathological results were still inconclusive.

My Busy Schedule
I was released to go home on April 3rd and that same night, at 10:00 pm, the hospital called my daughter to tell her that the results finally had come in and I had “spindle cell variant squamous cell carcinoma.” It was just my luck to have a cancer variant that was difficult to diagnose and a tumor that was atypical. Because of the size of the tumor, it was designated as Stage III Tongue Cancer. As scary as this all sounded, and since ignorance is bliss, I was confident that we would set a date for the operation, remove it, do some radiation, and then my life would go on as if there were no interruptions. I was still focused on getting this done quickly, so that I could go back to work. I might not have mentioned this, but I work for an accounting firm and it was our busy tax season. I had no time for this nonsense! I also omitted the fact that our daughter “the doctor” was 8½ months pregnant. We scheduled the operation for April 14th after meeting with a plastic surgeon who was going to handle the reconstruction of my tongue. It was, of course, inevitable that 2 days before my surgery, my daughter went into labor and on Easter Sunday our beautiful third grandson was born. Going to the hospital to visit them and holding this beautiful gift, I realized how blessed we were and I made a silent promise to him that I would fight with every ounce of my fiber to be around and love him and be part of his life for a very long time. The surgery lasted approximately 8 hours, followed by a 2-week stay in the hospital. The reconstruction team used tissues from the inside of my cheek to rebuild my tongue. To ensure that blood was flowing to my “new, improved tongue,” part of my cheek remained attached to my tongue, with tissue going between my teeth. (This brought a totally new meaning to the phrase “tongue in cheek”). All who saw me, the nurses, the doctors, my family, would tell me that I looked great. On the other hand, when I looked in the mirror I saw a “Quasimodo” look-alike: a disfigured face looking back. I could neither speak, nor eat, which as far as I’m concerned, is a curse for a Greek woman! Again, I was extremely lucky to have my second daughter, “the lawyer,” take the time to be my voice and to be helpful with the little details that arise with everyday hospitalization.

Difficult Days
I went home with my tongue still attached to my cheek through my teeth−unable to chew, barely able to speak, and in pain. Percoset, my new friend, helped me through these difficult days. This was when my husband realized that his caregiving would become an essential part of my recovery, and he stepped up to the plate. He tried to have me drink Ensure, but I still had some taste buds and the taste made me gag. He took it upon himself to emulsify any and every meal that he cooked for himself. I had brown liquid that was pork roast and mashed potatoes; white liquid that was steamed fish with vegetables, etc, etc. He truly became the “Iron Chef” of emulsified and liquid foods! Each and every day, whether I could eat or not, he insisted that I join him for dinner. This was the only time when he would not allow me to stay in bed or on the couch. I love to eat and there I was, smelling and watching him eat things that I used to enjoy. During those times I hated him with every fiber of my body, and I sat there wishing I could magically make him disappear. In retrospect, I realize that this was a great strategy for forcing me to get as much nutrition as possible to the point where I could partake in the great meals he was preparing.

My Daily Fare of Radiation
Since the cancer was stage III the doctors decided that I should have aggressive daily radiation for 6 weeks. In mid-May, in an outpatient procedure, the plastic surgeon detached my tongue from my cheek and advised me that I could now eat anything I liked. What a joke that was! My tongue was swollen and painful, I would choke if I tried to eat even yogurt, and the doctor had the sense of humor to tell me that I could eat! Obviously he never had a glossectomy. Thank you Percoset, you will always be special to me! On May 18 I started radiation. The first week was extremely difficult. I am borderline claustrophobic, and having a face mask immobilize me on the table was extremely confining and uncomfortable. Even though sessions only lasted about 15 to 20 minutes, each felt like a lifetime. I love the beach and I have travelled all over the world. To control the panic I was feeling I tried to visualize walking and swimming at a different beach each time. The mind is powerful thing, and I learned to control the panic I felt. While I was treated the technicians piped some music into the room. I realized that my sessions were lasting about 5 songs. So I developed the habit of singing the songs in my head and was thrilled when I heard the third song finish because I knew the session was more than halfway done. I also would like to point out that the radiologist, the nurses, and the radiation therapists were terrific. They truly tried to be compassionate, kind, and supportive every day.

Those were difficult days, but the staff played a big part in my ability to handle those difficult days. The side effects of radiation are brutal. Until you experience it, you do not realize how debilitating it is. I refused to have a feeding tube. I considered it a weakness and a form of surrender to the disease. I insisted that I would continue to eat, or rather slurp, whatever my husband placed in front of me. Each week eating became more difficult, but I was determined not to lose too much weight. I survived on protein shakes, my husband’s gourmet (!) slurpees, and what my doctors called the “Mangones diet”: hummus mixed with babaghanoush (eggplant dip). I ate bucketfuls of the mixture, and it provided me with the protein and fiber I needed to keep my strength. I also felt that I had to return to work. The psychological impact of being inactive for 3 months was starting to affect me. I was starting to feel sorry for myself. Luckily my employers were extremely understanding, and allowed me to return on a part time basis in June. It was not an easy time for me. Not wanting to be exposed to mass transit with a radiation-compromised immune system, I drove each day. Some days the return trip was so bad that I considered stopping at a hotel on the way home, calling my family and telling them to come get me. I was so exhausted physically but kept pushing myself to go on, one mile at a time. I used different landmarks on the way and kept focusing on reaching each one of them, without thinking of the total distance. I was also not prepared for some of the other side effects of radiation. I was lucky that my skin tolerated the radiation better than most (maybe my exposure to the Mediterranean sun had something to do with it!). The mucositis, the inability to swallow even my saliva, the thrush, the loss of my taste buds and the total exhaustion I felt made me wish I did not agree to the radiation therapy. I kept bargaining with my radiologist to reduce the number of sessions, but to no avail! Those were tough days, and it got a lot worse before things started to get better. Two weeks after the radiation ended I could not eat anything at all. And then, lo and behold, one day about 3 weeks after the end of radiation I woke up (a total of 35 lbs lighter) and felt like half a human being. Each and every day I felt better and stronger.

Counting My Blessings
It is now one year since my surgery. Eating is still difficult at times, but I eat what I can and enjoy every morsel of it. My taste buds came back and as long as I sip water with my meals, I can enjoy a variety of food. Speaking can also occasionally be difficult, but everyone understands my speech. My energy is back. I need to have a bottle of water with me at all times and my mouth and tongue do not feel like they used to before the surgery. However, I consider myself blessed and lucky. We had a rough 2009 but some wonderfully positive things happened to our family that I focus on (remember my little grandson?) rather than on my cancer experience. It is also important to point out that this journey humbled me. The support I had, and still have, from so many people was so unexpected. There is no doubt in my mind that all these gestures of love and support helped me recover. They made me stronger and enabled me to fight. No one that goes through something like this journey should have to do it alone. That is why I decided to join SPOHNC with the hope that I would be able to give back to others the support that I found around me. As a wise man told me: “Yesterday is the past, tomorrow is the unknown, but today is the present.” I have learned to enjoy each and every one of the presents I get and be thankful for them!

Helen Mangones

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