Head & Neck Cancer – A Personal Journey #13 – Reflections on Intimate Emotions

Posted on May 8, 2018 by Pat Camalliere

One of my writing resources is The Emotion Thesaurus, by Angela Ackerman and Becca Puglisi. The book details some 75 emotions. I experienced most of them at one time or another during the course of my disease.

I get compliments from friends and readers on my courage and positive attitude. I don’t think I’m doing anything out of the ordinary, except perhaps talking about my experience honestly. Even that began as a perfect storm: I had enough medical knowledge to understand and describe things, experience as a writer, and I was living with the disease.

As I’ve said earlier, I didn’t have a choice. If I wanted to survive, I knew that anything less than full cooperation with the program would only be harming myself. I guess you could call that positive attitude.

Now, two months after I finished therapy, I want this over. I am stronger, but I still have mucositis, dry mouth, poor taste, skin sensitivity and swelling (especially in the neck), and days when I just don’t feel well.  I don’t want to be thinking about fighting cancer every day. I’m tired of dreading eating instead of enjoying eating. I want a glass of wine! I want my life back.

Most on my mind is whether or not my cancer is gone. Did I go through all this only to find out I still have cancer and need further treatment? A PET scan will tell me that, but I can’t get it until three months after my treatment ends. If I get it sooner than that, before sufficient healing has taken place, I could have false positive results. I don’t want to have further treatment on the basis of false positive results. I have to wait.

“Oh, I’m so sorry!” well-intentioned friends and relatives say. “But you’re strong. I hope you’ll feel well soon.”

That’s not the way cancer works. With cancer, you start off well and treatment makes you sick. In order to get rid of your disease, you have to suffer side effects that aren’t nice and aren’t easy. You get worse every day, even after treatment is over. Eventually you get better, but it is slow and depressing.

In the beginning, I had a tender lump in my neck that I felt sure would go away with an antibiotic. I felt fine, but my doctors told me I wasn’t fine—I had cancer. If I didn’t fight it, the cancer would win and I would die. My initial emotional reactions were those of denial, amazement, reluctance, skepticism, surprise, and shock.

“This isn’t happening. It’s a mistake, or a bad dream. I’ll wake up and laugh about it.”

“I couldn’t have a life-threatening disease. I don’t even want to say the words.”

For me, the hardest part, the most stressful part, is making the right decision. This time was characterized by fear, anxiety, dread, guilt, nervousness, suspicion, uncertainty, and worry. Most of these emotions should be obvious, but why guilt, suspicion, and uncertainty? People in my generation grew up with an exaggerated sense of responsibility. I tortured myself with thoughts:

  • What did I do to cause this? (nothing)
  • Are those test results right? (they were)
  • Surely there’s some mix-up! (there wasn’t)
  • Should I agree to the recommended treatment? (I did and I think now I made the right choice).
  • I don’t want to think about this now! (I have to.)

During this time I took a mild medication that calmed me down during waking hours and allowed me to sleep through the night.

After I decided to follow the recommended treatment plan, new emotions set in: acceptance, avoidance, and sadness. I put off thinking about cancer and didn’t do a lot of research. I wanted to avoid confusion between what I read and what my medical team told me to do. I engaged instead in a rush of activity.  

Okay, I have to do this thing, so I’d better get ready.

I scurried around, getting necessary (and probably some not-really-so-necessary-after-all) tasks done, distracting myself. I was pretty good at this, having practiced other times in the past by simply not allowing myself to think about unpleasantness and throwing myself into activity.

I couldn’t entirely ignore thinking about cancer, of course. Instead of letting such thoughts take over my life, I set aside specific times when I would be alone to give emotions and fears free reign. it might be before I got up in the morning, or at bedtime. in a chapel if that could be arranged, or just in a quiet room where I could be sure such private moments wouldn’t be interrupted. Often they took the form of conversations with God, which I see as a type of prayer. These moments were followed by purposeful activity until I felt ready to cope with life again.

When I started treatment, I was determined, confident, defensive, eager, and resigned. 

  • I’ve made the best decision I can and prepared as well as possible.
  • This is happening, so no use crying about it.
  • I’m not going to like it (resigned), but the sooner I get started the sooner it will be over (eager). Life has been tough before and I’ve gotten through it (determination, confidence).
  • “Don’t confuse me—I’ll decide who’s giving the best advice and follow it my way.” (defensive).

Then side effects set in, and I became annoyed, confused, frustrated, insecure, overwhelmed, my thoughts doubtful and conflicted:

  • I’m doing everything they’re telling me to do, as well as I can. Why isn’t it working better?
  • It’s taking every moment of my day! I can’t get it all done!
  • Am I doing it right? Did I misunderstand the instructions?
  • Should I take something for pain or tough it out?
  • Is this minor pain in my chest an expected side effect, or some other medical issue I should call about? Or maybe just nothing of significance?
  • Should I bother a doctor or nurse with this now, or wait it out another day? Maybe I’ll be better in the morning.
  • Am I blowing this out of proportion? After all, everyone says I’m doing so well…
  • I’m so tired!

When I wasn’t at the hospital for treatments I was home with Chris. He sensed when to leave me alone and when I wanted company. I didn’t need to be alone for emotional reasons, but just because I needed a lot of rest. I was happy to see friends and family, but afraid visitors might stay too long and tire me too much.

Later, side effects got worse and I started to feel anguish, suffering, disgust, hurt, and irritation.

  • My whole life is this disease! I’m too busy, too unwell, and I’m tired of it.
  • What new pain am I going to have tomorrow, and when is today’s pain going to stop?
  • These burns on my neck, my dry and wrinkled skin, the disgusting flakey patches on my face…. I don’t want people to see me.
  • Yet: These physical changes are like wearing a badge of courage. People can see what I’m going through.
  • My breath must smell like something died in my mouth—probably because something IS dying in my mouth—diseased cells!
  • “Don’t tell me what to do! I’m already doing my best. I’d love it if you brought over dinner and a bottle of wine, but I can’t eat anything except oatmeal, I can’t drink wine, and you’ve just made me feel bitter about that, thank you very much!”

Of course I knew people were doing their best to be kind and helpful, but I was frustrated that they couldn’t understand how bad off I really was. Then I was angry at myself for criticizing their kind attempts.

As I neared the end of therapy, I found perseverance and hope. Yes, the neck pain was worse every day, and I was eating less and less, but that last session was coming up.

  • I’m almost there! I can do it!
  • This will all be over and I’ll be well again.
  • I just need to get through a few more….

Then it was over, that last day. I was proud, elated. I wanted to share the feeling, so I bought gifts—gift cards, donuts, books, hand-crocheted items—for doctors and staff members.

I’m all done, I won’t be seeing you again, but look how you all helped me get through this, share my sense of accomplishment, remember me and how grateful I am to you.

I didn’t say any of this, but it’s how I felt. I smiled and said, “Thank you,” and I hoped they knew I wished I could jump and shout but that’s just not me.

Then I was alone, but not really alone. It wasn’t loneliness I felt. Chris, my family, my friends were there—all I had to do was ask. I’d be seeing my team for check-ups, and I could call them anytime. But it’s not the same as having a daily chance to ask questions, complain, and brag about accomplishments to people who cared about me.

My biggest letdown, the most emotional time I experienced, was during recovery. I had fooled myself into thinking, no matter how often I was told otherwise, that now my life would go back to normal. Instead I was worse than ever. This recovery thing was not going to be so great either. It was harder and going to take a lot longer than I wanted to think about. I didn’t even have the satisfaction yet of knowing that my cancer was cured. Disappointment, defeat, depression, desperation, and impatience set in.

These feelings were transitory. I soon convinced myself this was just another hurdle on the way to cure. I was being too impatient. My strength came back first, and with it my ability to deal with ongoing side effects. Now, two months into recovery, I have started to pick up pieces of my life. I returned to my writer’s groups, board meetings, and volunteer activities on a limited basis. Although eating and skin problems persist, I am stronger, resulting in days that are longer and more productive. This gives me a sense of relief and renewed determination. I had been dragging my feet, but I have made hotel reservations and bought tickets for the planned trip to sing at Carnegie Hall in June. I may have to do less than I customarily do when traveling, and eating out may be a challenge, but I’m sure we will still have a wonderful time.

Throughout my cancer experience:

  • I never lost my sense of humor. I think I inherited this from my father, an Irishman with a wry sense of humor and acerbic wit. He once scolded the occupants of an elevator he was riding in. He was on a gurney attached to oxygen at the time and said they were stealing his air. Like Dad, I joked and poked fun at myself—such as when the blueberries turned my tongue black.
  • I remained curious, inquiring how each step in the process was expected to work. Writing this journal helped keep that in the forefront.
  • I felt gratitude for many things: for the fact that my cancer had a high cure rate, that I was surrounded by loving and caring family and friends, that I had access to skilled medical care. There were times I was overcome with happiness and love by something done for me, like meaningful cards, messages, or gifts from people I didn’t expect. A close friend sent me a prayer box, a little note pad inside. On each page she had entered a personal thought or memory about things we had shared, one each day until the pages ran out.
  • I heard from other cancer patients, or saw them in the hospital, some having a harder time than I am having, and often felt sympathy.
  • Despite all attempts not to overthink my situation, I couldn’t stop fear from upsetting me from time to time. Fear was based on things I hoped would not happen, rather than things that were happening.

o   Will it hurt?

o   Will I have to have surgery?

o   Will I be disfigured?

o   Will I ever finish all the books I want to write?

o   Will I see my new granddaughter grow up?

o   Am I going to die?

 There were expected emotions I did not feel.

  • Anger: I tend to deal with problems in a set order: Awareness, anxiety, acceptance, decision, and action. I didn’t consciously make a decision not to be angry about developing cancer, it just never occurred. Perhaps I was too busy to entertain angry emotions.
  • Indifference: Indifference can be a coping mechanism. I have always believed that life gives a person good and bad, and the only thing we can do is enjoy it when the good comes and deal with it when the bad comes. Some might call this indifference, but I call it accepting fate.
  • Resentment, envy, and nostalgia: More coping mechanisms. No matter how much I wished I could enjoy the taste of food again, I didn’t feel envious when I saw others eating or dwell with nostalgia on the days I enjoyed food. I only wanted my sense of taste to come back. Who or what would I resent? That would mean attaching blame somewhere, and that didn’t make sense to me.
  • Regret: I didn’t find myself regretting past actions, only hopeful that I would be allowed time to do things that remained important to me. It is human nature to search our souls at such life-changing times, though. I realized I can be a better person than I have been, and I continue to pray that I will come out of this as that better person and at peace.

 Next post: Cure? Results of my PET scan will be announced before the end of May.

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Head & Neck Cancer: A Personal Experience – #12 Recovery

Posted on April 17, 2018 by Pat Camalliere

Recovery

 “The long black skirt is classic, but the navy mid-calf with the paisley border print is dated,” Clare, my daughter-in-law, said. “Don’t be angry with me…”

With the ten pounds I lost intentionally last year and the twenty pounds I lost since cancer entered my life, my clothes didn’t fit anymore. For years I had saved favorite clothes that had gotten too tight, thinking I may fit them again someday. Well, “someday” was here! If they were ever going to be of any use, now was the time to get them back in my wardrobe; if not, it was time to get rid of them once and for all. I pulled them out of boxes in a back closet and tried them on. They fit, but were they fashionable enough? Were they suitable for a woman my age?

Had this grey linen suit I loved come back in style? Was it classic enough to wear again? Was it worth altering or only good for the trash bin? All my pants had wide legs and skinny pants were the style now. Can a woman my age wear skinny pants, or leggings? If so, how did I put outfits together? What shoes did I wear with the current styles? I had no dress boots at all, only snow boots.

I wasn’t good at this, but Clare was a fashion designer and I asked her for help. She thought she was being ruthless, but I ended up with more than I thought. Nonetheless, Goodwill was going to have to open an annex.

Ask any woman—one of life’s greatest satisfactions is putting on a great outfit, looking in the mirror, and thinking you look good.

It was the day before Easter. I had the first sign of tongue cancer at Thanksgiving, was diagnosed shortly thereafter, started cancer treatment at the beginning of the year, finished it March 1, and by Easter I was one month into recovery. That’s what the medical team called it.

Recovery (definition): Return to a normal state of health, mind, or strength. Yes, that’s what I wanted alright—nothing exorbitant, just to be normal again. I wanted to be rid of nausea and pain. I was tired of focusing my mind only on my health and crashing every afternoon. I was anxious to recover. I wanted my life back. But it was *)%$^* slow!

My doctors said I was progressing more rapidly than most patients, but not to expect to recover overnight. It was going to take a while. Radiation was a cumulative process. There was more to come, some new, some better, some worse, but slowly I would improve. Side effects could continue to occur even months later. Since I had done well so far, I expected my side effects would be minimal.

From the beginning I had tried to deny I had cancer, then minimized how side effects would change my life. I should have known better by now, but perhaps underestimating my disease was my way of coping with my desire to be well again. Why should recovery be any different? Like everything about cancer treatment, recovery is difficult but doable.

On my last day of radiation, a week after my last chemotherapy infusion, I had throat pain when I swallowed, no appetite, thick secretions in my mouth, mild nausea with food, and was able to eat only a limited diet consisting of mainly oatmeal, pudding, and Ensure. My neck was irritated and painful from radiation burns, requiring steroids, lubricants, and soaks. I had a rash from chemotherapy in addition to the radiation burns, my skin was dry and sensitive, with painful splits on my hands and feet. What little sense of taste I had was out of whack—everything tasted the same, salty, metallic, and bad. Swallowing was an effort and rather tricky. All day I followed a health care schedule, leaving little time for personal matters. By mid-afternoon I was exhausted.

In the first week post treatment, there was little improvement. My diet and skin conditions remained the same. I didn’t expect things to change in a week, so I was patient at this point, thinking I would start feeling better soon, perhaps even the next week.

During the second week post treatment I was disappointed but I told myself it was still early to expect significant improvement. I didn’t leave the house because it was too painful if clothing touched my burns. I developed pain in my left ear with discharge of a clear fluid. My otolaryngologist said the inflammation was due to inner radiation burns like the exterior ones on my neck. The ear soon got better with antibiotics and eardrops.

The third week post treatment was the low point of my entire treatment process. I faced the fact that I was still getting worse instead of better like I expected, and I had had enough. My mouth was coated with mucus so thick and nasty in taste it brought me to desperation. I reread the materials given to me on my last day of treatment and discovered to my horror that the mucositis could last three months. For the first time I didn’t think I could get through it. My tongue, gums, and cheeks were painful. At this point I was spending two hours a day actively treating my radiation burns, and mouth care entailed brushing and using three mouth care products four times a day, each session lasting an hour and a half. None of it seemed to be doing any good. I returned to oncology for an unscheduled visit to be sure I didn’t have something else going on, but no, it was just mucositis. Just! I thought. It seemed the straw that would finally break me.

It wasn’t until week four post treatment that I was able to add back a few foods, very slowly, sampling a bite or two once or twice a day. I didn’t get nauseous, but food still tasted bad. I got down little bites of meat, rice, vegetables, or bread if after chewing them I added water before swallowing, but I didn’t enjoy eating because the mucus was still bad and the taste unpleasant. I kept experimenting. The burns on my neck were improving, and I was only lubricating my neck with Aquaphor ointment now.

By my one month follow-up visit, my doctors still thought I was doing well. I was happy with the way the burns were healing, but still very disgusted with the mucositis and inability to taste and enjoy food. My tongue hurt, especially at the tip. I was only brushing and using Biotene four times a day now, since the other routines seemed to be doing more harm than good. I had more personal time once again.

Despite the continued side effects, I was gaining strength and improving slowly. I was able to enjoy Easter with my family. The whole family came to our house and I prepared brunch (with help!). I was able to nibble, taking a bite or two of ham and French toast casserole. I couldn’t eat the blueberry shortcake that seemed excessively sour, but I sat at the table with a plate in front of me and my family around me, and it seemed like a normal holiday. We colored eggs and had the first Easter Hunt for my two-year-old granddaughter. With caution, my energy level lasted through mid-afternoon.

It is now a little more than six weeks post treatment. My neck burns are still a little uncomfortable, but I’m able to wear soft clothing and get out in public again. My skin is what I would describe as “normally dry” now, with no more “snakeskin” or “splits.” My throat is still very dry and hurts when I swallow, especially in the afternoon and evening. I am gradually increasing activities: I’ve returned to two of my writers’ groups, board meetings, and I’m spending a few hours at the Historical Society as a volunteer. I just began walking an indoor track again to build strength.

I’m still eating oatmeal, but I’ve stopped Ensure. I still can’t eat acidic, strong-flavored, or overly sweet foods, like salad dressings, ketchup, or chocolate. I’m eating meat, bread, rice, potatoes, nuts, and vegetables in small portions. I still have no appetite, and the mucositis coating, tongue irritation, and taste are as bad as ever, so eating is still an unpleasant chore instead of enjoyable. Swallowing is getting stronger, and I can even repeat swallow—carefully.

We had a beautiful day last week, the sort of day we should be having every day at this time of year, but then again, this is Chicago. Chris and I got together with a friend to hike in a local forest preserve and explore the setting for my upcoming book. I had been there before, but it looked different without summer foliage hiding the remains of the demolished clubhouse and farm we had come to find. I’m still smiling.

So how do I feel about all this, right now?

Well, I wish I was better by now.

  • I wish I could feel fully recovered tomorrow.
  • I really want a Big Mac, a piece of pizza, and a glass of wine.
  • I wish I could go to meetings in the evening and not have to struggle to talk between sips of water and a painful, dry mouth.
  • I wish I wasn’t distracted by fatigue late in the day, and could spend a full day on normal activities.
  • I wish my throat didn’t hurt and I could enjoy eating again.

On the positive side—

  • I’m happy to be well enough to return to activities I enjoy: family, writing, volunteer and board activities.
  • Pain and nausea are no longer interfering with my life, although they remain to a small degree.
  • I can swallow and eat, but not yet enjoy, some food, and my skin is almost normal again.
  • I don’t “crash” physically as early or as often.
  • I’m starting to think about scheduling social and marketing events again.
  • I gave a short reading at an annual writers’ public reading, and committed to appear at Printers’ Row in Chicago in June.
  • My calendar has more than medical appointments. It has things I am looking forward to.
  • I have a new (old) wardrobe!
  • I feel I accomplished something big and worthwhile.
  • I feel I met a challenge with positive attitude and grace.
  • Three immediate goals I now feel I can tackle:
    • I will see that my blogs about this journey through cancer are available in book form.
    • I have already started to review the historical mystery book I started before cancer so I can finish it!
    • In early June the chorus I sing with will be performing at Carnegie Hall.

Whatever it takes, I will sing at Carnegie Hall, I will publish a book about my journey through head and neck cancer, and you will be reading more historical mysteries about my hometown. I will not let these opportunities pass!

Next Post: Emotional Aspects

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Head & Neck Cancer: A Personal Experience – #11 Angels and Heroes

Posted on April 11, 2018 by Pat Camalliere

Angels and Heroes

Angel: Someone very good, helpful, or kind. Angels make you smile when you see them. They make your day when you are sad or in pain. They are sweet and help people in need, especially those going through really tough times. The name “Angel” says it all.

 

Hero: A person who is admired or idealized for courage, outstanding achievements, or noble qualities. A hero knows what needs to be done and does it in a superlative way. Heroes don’t think they are doing anything unusual. It’s just their nature to be that way.

 

 

As a cancer patient, I didn’t have to worry about being alone—my life was full of angels and heroes. Today health care employs an amazing number of them. My family and friends also revealed themselves in a new light.

I mentioned in an earlier post that I personally favor teaching hospitals. Some don’t agree. “I want to be close to home. And you’re treated like a number in those big places.” I think these comments are misconceptions that don’t consider level of care.

It takes at least twenty minutes from leaving my house to entering the nearest community hospital. If it takes forty-five minutes instead, my life is worth an extra twenty-five minutes. I waste more than that on computer games and television.

My care at a university hospital has been more personal than what I experienced at community hospitals. The doctors I see have been warm, caring, and generous with their time. I wonder if this is because at community hospitals doctors have to do more themselves, whereas at teaching hospitals residents share the work, leaving my doctor more time to spend with me. Daily contact with students and residents keeps doctors on their toes: they have to stay current to teach. In addition, if needed elsewhere, a resident can see me until my doctor arrives. I think these benefits outweigh spending a few extra minutes on the road.

Bottom line, for any important medical issues I want the best care available, not the most convenient. What could be more important than saving me from cancer? I have worked in both a community hospital and university hospital setting and I think there is a real difference. You will find me at teaching hospitals.

That being said, of course angels and heroes are at all hospitals and good medical care can be found close to home. I just think the high standards that a teaching environment creates ups the numbers.

Let me tell you about my personal Angels and Heroes:

To begin, I was fortunate to have a medical team I really trusted, who never made me feel rushed and answered all my questions truthfully without sugar-coating. There were four doctors involved in my care:
• My internist recognized that the tender “lump” on the side of my neck was not a simple swollen gland or other benign growth, but something that needed further investigation. She saw me the same day I called her and contacted my otolaryngologist while I waited in her office. Before I left the hospital that day I had already had the CT scan that revealed my cancer. This is an example of personal care and how quickly things can happen in a university setting.
• My otolaryngologist greets me with a cheery smile and says, “What’s happening?” He told me my disease was not easy to treat, but it had a high success rate for cure. “We have ways to fix this.” He fit me in whenever I needed him, even when only to set my mind at ease. Once he called me from his car after 8 pm after a long day in surgery. I felt he was watching over me in the background, and under his care things would turn out well.
• My medical oncologist was a quiet and gentle woman. She made me comfortable and patiently listened to my complaints and questions. “Everything tastes the same—BAD!” I ranted once. She is noted nationally for her expertise in the field of head and neck oncology. Since her practice is limited to this field, she surely sees many people who are having the same problems as me, and would quickly recognize anything that didn’t go as expected.
• My radiation oncologist was young, enthusiastic, and charming. I liked him immensely and immediately, and he never let me down. I could tell he wanted my treatment to be successful as much as I did. Not only did he spend long periods of time with me, but was interested in my life and activities. He gave me his email address and invited me to contact him any time. The few times I did, he got right back to me. He looked for ways to make me more comfortable when side effects began.

Other team members gave me phone numbers and email addresses to contact for scheduling, urgent requests, and minor questions:
• A resident physician saw me routinely before, after, or with my radiation oncologist. He was also enthusiastic and knowledgeable, and took particular interest in me and my care. I trusted him completely. I hoped he would be employed by the hospital after he completed his residency in a couple of months. Coincidentally, his last day with head and neck radiation oncology was the same day as my last radiation treatment.
• A nurse clinician met with me weekly prior to my appointment with my radiation oncologist, took my weight, blood pressure, temperature, pulse, and oxygen. We chatted about how I was doing and made suggestions, gave me instructions and sample products for my side effects. He came up with solutions to help my radiation burns and mucositis.
• A nurse coordinator saw me prior to each oncology visit. She not only did a volume of paperwork required to document my condition and care, but managed my prescriptions and suggested remedies to make me more comfortable. Like my oncologist, she was quiet, gentle, and caring.

All members of the Department of Head and Neck Cancer met at weekly “Tumor Board” to discuss the best options for new patients and to review progress of patients under treatment. This brought together not only physicians from radiation and chemotherapy, surgery and research involved in my care, but their nurses and other support staff. I was reassured to know that they talked about me together, as nothing would be missed by poor communication. In addition to my doctors and nurses, present at these discussions were:
• Clinical Coordinator – This was my go-to person whenever I needed quick advice or help with the system. She got priority appointments for me when needed, sometimes multiple appointments back to back for convenience. It was a great help to have someone who knew the system and saved me hours. She also had many helpful suggestions.
• Clinical Research Nurse – I had opted to be treated under a study protocol, and the clinical research nurse had to complete the paperwork and be sure required appointments were scheduled. As another pair of eyes, she ensured that everything was done correctly and on time. She was present at many of my appointments with my doctors and added another level of care.
• Speech therapist/pathologist – I met with a speech pathologist weekly. This was described in my previous post (#10). The benefit was to strengthen muscles that keep my throat, tongue, speech, and swallow functions operating.
• Dietitian – As noted in the last post (#10), adequate nutrition is important for successful treatment of cancer. I also met with dietary services weekly.

Having all these specialists present at tumor board gave them the opportunity to stay current with my progress and to make suggestions along the way.

The next group of angels and heroes were those who actually performed my treatments:
• Oncology nurses performed my eight weekly chemotherapy infusions. In each “pod,” or infusion room three or four skilled chemotherapy nurses administered infusions. Most of the infusions took place in the same pod and the faces became familiar. One would take charge of my care for that day, but all were present and available if needed. They were all friendly, caring, and competent. (See post #5 for details.)
• Radiation therapists positioned me on the radiation table, attached my mask, and ran the machinery that delivered the radiation program written for each day. Most of my care was delivered by three individuals. Some rotation took place so each therapist remained skilled for the variety of cancer treatments that took place in the department. I was fortunate that at least one of my group of three was present at almost all of my thirty-five treatments, and appreciated the familiar faces. (See post #4 for details.)

Because I had been responsible for hiring and training receptionists and medical assistants during my working life, I know there is a tendency to undervalue these team members. They are the first people patients encounter and the way those encounters take place can make or break an impression. People who are dissatisfied generally point not to their medical care but to how the phones are answered, how quickly their registration took place, how they were treated when they arrived, how long they had to wait, etc. It takes very special people to create a welcoming, caring, and competent impression, especially when dealing with the sick and frightened. To undervalue their importance is a huge mistake.

I am happy to say that the staff at my hospital met this challenge.
• Reception staff – they welcomed me, signed me in, verified my identity and appointment details, printed and processed my paperwork, attached my ID bracelet, and gave me a parking sticker and directions, all efficiently, courteously, and with a smile. (See, it’s not as simple as clicking buttons and saying “next.”)
• Phlebotomists: Since weekly blood tests were required to monitor my condition and be sure no dangerous levels would interfere with treatment, a phlebotomist took my blood prior to each oncology visit and infusion. Invariably they were cheerful, chatty, and competent. I never had to be “poked” more than once and bruising was rare and minimal.
• Medical assistants – These staff members escorted me to the examination room and took my blood pressure, temperature, weight, oxygen, brought up my file on a computer screen, and entered the values obtained. It takes a caring and patient person. Although I knew it was far from the truth, there is a tendency to blame the medical assistant when the wait in the exam room is longer than desired. Like most people, what I wanted was not to talk to an assistant, but to see my doctor and get on with it.

ID checks are a routine part of the process. At each step along the way, each time I saw a new member of my team, I was asked to verify my name and birthdate, my ID bracelet was checked, the information was matched to “stickers” that were attached to my paperwork and blood collection tubes, and computer entries were made.

The number of people involved in treating cancer is astounding. I think I’ve identified over twenty-five Angels and Heroes by now…

Integrative Medicine
In addition to traditional cancer treatment, help is available for cancer patients having difficulty handling anxiety, pain, fatigue, side effects, or those who just want to be more in control of their health.

Presently into my second month of recovery, I have yet to feel I need support other than what has been provided by my medical team, my family, and my friends. However, it is reassuring to know that options exist. Some, but not all, of the resources are offered at my hospital, but I was given a list with contact information at my first oncology appointment. Literature about a variety of support groups and organizations was always available in reception rooms as well. It seems that no matter what you may need, someone out there provides it.

Included are:
• Integrative and behavioral medicine complements:
o Acupuncture
o Biofeedback
o Guided Imagery
o Herbal Counseling
o Individual Counseling
o Massage Therapy
o Medical Hypnosis
o Pharmacists
o Yoga

• Non-medical support:
o Social Workers
o Financial Counseling
o Palliative Care
o American Cancer Society
o Community Psychosocial and Support Services (list of specific support and educational groups available to handle emotional aspects of cancer treatment in a range of community settings)

Family and friends
I may be mentioning them last, but that’s no reflection on their importance.

I don’t know how I could have gotten through cancer treatment without my husband, Chris. He drove me to every appointment and waited with me, shopped for groceries or anything I needed, took over the bulk of household chores, and gave me encouragement and compliments. He never complained about our lack of social activities or his meals during therapy. He even let me pick television programs—although he kept control of the remote and I had to keep waking him up to change channels. That’s the short version—you get the idea.

My sons, daughters-in-law, and grandchildren were very supportive too. They called frequently, bought me comfort items, visited when I was up to it, sent cards and gifts to cheer me up. Bob and Dolly, both doctors, were available whenever anything came up. My family all wanted to do more, but there really wasn’t much to do.

I received many cards and emails from friends, neighbors, and organizations I’m members of: my writers’ groups, my library, our historical society, and a community chorus I sing with. I received flowers and gifts. I collected all my cards in one of those decorative photo boxes, and the box is full. Some people sent a card every week. Others have been reading this blog and send emails full of encouragement, prayers, and thanks. Many offered to help in any way, but really, there was little I needed other than their notes and prayers.

When something as life-threatening as cancer occurs, it is very valuable to hear from people you care about. It makes you feel worthwhile. I often thought that, when I die, the most meaningful thing to me would be for everyone who had touched my life to take a moment and think, “How sad. She was a good person and I liked her.” I feel like I had an opportunity to see that in life.

Angels and Heroes, I am so grateful and I love you all. Whether it was in person, by snail mail or email, what I received means more than I can say, and I’m going to stop right here before I cry.

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Head & Neck Cancer: A Personal Journey – #10 Nutrition & Speech Therapy

Posted on April 3, 2018 by Pat Camalliere

Support Services: Nutrition and Speech Therapy

I lost five pounds from the time I was being tested for cancer until the beginning of treatment. Since I was twenty or thirty pounds overweight, that seemed like a silver lining to me. If I had to go through a nasty time, at least I could come out of therapy down to the weight I desired.

That wasn’t the way my oncologists saw it. They insisted I maintain weight as well as I could to stay healthy and give my body the tools it needed to fight my disease. Goodbye silver lining.

So, at my second chemotherapy infusion I saw a dietician.

“During cancer therapy is the worst time to lose weight – the body needs nutrition to fight the disease as well as to deal with therapy. During therapy you should expect to burn calories up to three times faster than normal.”

I hadn’t thought of that. In essence my body was using calories for its normal daily functions (one) as well as to fight cancer (two) and to replace what treatment was using (three)—triple the amount of energy I would require when healthy.

I was urged to maintain a high calorie count. The reasons they gave were convincing. If I lost weight too quickly I would lose muscle mass. Important things are done by muscles—my heart, for instance. Too rapid weight loss would also decrease my body’s ability to fight cancer by reducing the effectiveness of my immune system—the way chemotherapy cures cancer. There was even a danger that my radiation mask would no longer fit snugly and immobilize me during radiation therapy!

There was no way this was going to equate to my normal eating habits. A lifelong yoyo dieter, I had gained and lost the same twenty pounds or so every eight or ten years throughout my life. I was left with a metabolism that was fooled into thinking I could exist on 800 calories without dropping a pound. I routinely avoided fats and carbs for years, had managed a ten-pound loss over a year’s time, and was maintaining my weight on that diet.

Now I was being told:
• Eat as many calories as possible.
• Add butter, sugar, cream to everything. The more the better.
• High calorie, high protein.
• Try for 1500-1800 calories a day.
• Drink milkshakes, smoothies, eat pudding and ice cream.

That may sound like a dream come true, but the problem was I had no appetite, soon everything either had no taste or tasted lousy, and my guilty mind believed I was eating BAD foods.

The biggest problem was, I just wasn’t hungry. While I was undergoing testing for cancer, I had no appetite due to anxiety. I was tolerating all foods, but I had to force myself to eat. Once therapy started, I lost another five pounds in the first week due to throat pain from my biopsy and nausea and constipation after my first chemotherapy infusion. This brought me to ten pounds below my pre-cancer weight. My medical team was not happy, but I promised them I would do better. I must repeat that a strong personal fear was of having to have a feeding tube.

Dieticians saw me every Monday in radiation therapy. A speech therapist saw me every Friday. At first I thought that was overkill, but those thoughts were shortly nipped in the bud. While oncologists were managing treatment, these ladies, along with my nurses, were teaching me how to manage everyday life and how to survive not only my cancer but my therapy and recovery.

The dreaded feeding tube hung over my head. To avoid that I had to eat and not lose the ability to swallow. So I welcomed help. Before long I brought a list of questions to each visit.

I was being treated at a teaching hospital, so sometimes I saw student dieticians. They were young but knowledgeable and enthusiastic, and the registered dietician summarized each session. It was clear that they all wanted me to succeed and took a personal interest in my care. They reviewed what I was eating, asked about difficulties, checked my weight, and offered suggestions. They set a calorie level for me, 1500 to 1800 calories per day. Since I generally ate less than 1000, I didn’t agree, but said I would try.

I was advised to eat smaller meals, but more of them—six a day—and given handouts with suggestions for high-calorie foods to pick from. Listed were things I could add to my food to provide more calories and suggested menus. I was also encouraged to drink Ensure or similar products to keep the calorie level up. On my own I started a journal to record what I ate each day, my calorie count, how I felt, problems and successes, and recorded my weight weekly.

By the second week of radiation therapy my anxiety and constipation were over, but side effects were developing that made it hard to eat. I had mild nausea, painful and difficult swallowing, loss of taste, sores and later a persistent unpleasant coating in my mouth. My appetite wasn’t only poor, it was nonexistent. Every time I sat down to eat it was an effort. Nothing was appealing, and after a few swallows, eating was a struggle. I had to give up the idea of eating the foods I was accustomed to and eat for survival instead of enjoyment.

In addition, I was spending much of the day Monday through Friday at the hospital, so my food had to be portable. I could have just drunk Ensure and called it done, but I was afraid if I stopped chewing and swallowing I would end up with that feeding tube, and if I didn’t eat solid food my constipation would recur.

“Pain isn’t so much a problem for me. Nausea and taste are a bigger deal. Everything tastes awful, salty or metallic, and I have no appetite. A few bites and I feel full and don’t want to eat anymore. If I push it, I get nauseous.”

“You need to get more calories into smaller portions of food. That’s why Ensure is good, and high-calorie additions.”

They checked my weight, compared it to the computer records and reviewed my journal. “You are actually doing quite well. Even on a lower calorie count than we recommended, you’ve gained back a couple of the pounds you lost.” Big smiles on the faces of both students.

I discovered that packaged biscuits and rolls from the dairy case, the ones you take home and bake, are small and very high in calories. I made a sandwich with peanut butter, jelly, and cheese for a calorie count of 380 and it was portable. I felt proud of this discovery for a week or two, when I couldn’t handle bread anymore. It turned into a thick tasteless blob in my mouth that I couldn’t swallow without wanting to vomit.

After that I turned to hardboiled eggs, cottage cheese, and pudding, traveling with little containers so I could eat in the car. Soon even the eggs and cottage cheese were difficult. Almost all food tasted really bad.

“What are eating now that you tolerate?” I was asked.

“I can always eat oatmeal and drink Ensure. Other foods are iffy,” I told them. I added cinnamon sugar, butter, and cream to oatmeal to bulk up calories, and a cup of coffee with cream (my only coffee of the day, since caffeine is discouraged). Thus prepared, breakfast was 250 calories. Ensure is 350. So with these two things alone I was halfway to my calorie count.

“Then eat oatmeal and Ensure,” I was told. “We may have same samples. What flavor do you like?”

“It doesn’t make any difference. Everything tastes the same.”

On another visit I felt discouraged. “I do okay earlier in the day, but by afternoon or evening it gets really hard.”

“That’s because side effects build during the day. Take advantage and load yourself early in the day so you can eat less in the evening.”

A few of their suggestions didn’t work for me. Some people like cold foods like ice cream and milkshakes. I found warm foods easier to swallow, even warm water. Ice cream, no matter what flavor, tasted like salty metal to me. I also couldn’t tolerate sugarless candy or gum. These burned and then left an unpleasant, nauseating taste in my mouth, sometimes for hours afterward. To keep my mouth “busy” I preferred warm (never hot!) water or tea.

My reward? After two months of cancer therapy I lost only ten pounds!

Speech therapy:

Speech therapy is routine for treatment of tongue cancer, but I would have asked for it, due to my fear of a feeding tube. Even if a tube is placed, one needs to be concerned about swallowing, breathing, speaking, and long term lifestyle. When I envisioned the area where I knew my primary lesion was, I would picture my throat swelling, closing off my airway, me choking, food stuck, unable to breathe. None of that happened, but I needed reassurance over and over.

At my first visit with the speech therapist, she asked questions and let me explain my fears. She observed me and felt my neck as I swallowed foods of various thicknesses, including water, applesauce, and graham cracker.

She then assigned a series of exercises. Some were familiar, as I had watched my mother do them. The series took less than fifteen minutes, and I was to do them three times a day. The goal was to strengthen and train the muscles involved in the swallowing process.

One of the exercises was to stick my tongue out a little, hold it with my lips or teeth, and swallow. It was awkward at first. In fact, it’s still awkward three months later. Try it and you’ll see what I mean. Another was to sing the vowel “E,” starting low, going very high (falsetto), sustaining at the high pitch, then dropping to very low. That was easier to do, but embarrassing if doing it in public, and I spent much of my day at the hospital.

I’m not proud of my compliance with these exercises. Despite my motivation. I sometimes forgot them, sometimes was too tired, and sometimes it just didn’t work out. I tried to do them in the car, or whenever I remembered during the day, or to do the less “obvious” ones even in public. I got some of them done every day, and my therapist was happy. She could see I was doing well and was more compliant than the average patient.

I also brought questions to my appointments with her. Being careful not to make promises (medicine is not an exact science), she nonetheless set my mind at rest about my image of my closing throat.

“Your ENT is the best person to discuss that for your particular case. However, I can tell you that is not something we anticipate.”

“Then why do many people with this diagnosis get feeding tubes?”

“Some aren’t as cooperative as you. Some can’t eat due to pain, not due to ability to swallow. Your swallowing muscles will always work. However, side effects limit how effective the process is. You can minimize that by doing the exercises, whether you are having problems or not.”

She told me to watch for coughing, for sticking of food that was not cleared by multiple swallows, and for congestion after meals.

Despite the exercises, side effects did change the way I swallowed food, partly because of pain when swallowing and partly because radiation to the area seemed to make it harder to do. Swallowing became of necessity a conscious thing. If I swallowed too quickly or if food hit my soft palate or the back of my throat unexpectedly, food stuck or I had a coughing spell. I didn’t gag, but sometimes I could feel the food staying at the top of my esophagus and would have to wait a short time for it to move down. Mucositis caused not only thick mucus but also sore spots on my tongue, cheeks, and gums, which limited the way I moved food around in my mouth.

Swallowing a number of times without break was hard to do, both because I could feel the muscles tensing and for fear of choking.

“I put food in my mouth and it comes together in a ball, but then I can’t swallow it until I add water to thin it out. Sometimes I cough because the water drizzles down while the rest sticks.”

“Yes, swallowing different consistencies can be hard. Try this: when you want to mix the foods in your mouth, drop your chin and let the food come forward to mix. There’s more room for it there.”

That worked like a charm! I also found that it was helpful to swish some water in an empty mouth every now and then and swallow that, so that little particles hiding below my tongue or beside my cheeks didn’t surprise me.

Through most of my therapy and recovery, I had a sore throat for at least a part of each day. I usually woke finding that swallowing was painful, but after a few consecutive swallows eating breakfast the pain would go away. It got more severe again in the late afternoon and evening, but again got better whenever I was eating. It was sore at night, but since I swallow so infrequently during the night it didn’t interfere with my sleep.

“Some of the pills they’re having me take I swear were meant for horses. What do I do if I can’t get them down?” I worried. It never actually happened, but on occasion pills did seem to stick for a time at the back of my throat. I was always able to work them down with water.

“You can crush them, or twist the capsules apart. Another thing you can do is put the pill in a spoonful of pudding. It seems to make pills slide down easier.” I didn’t have to try that, but I hope I remember it!

My reward? The result was that I never had to have the dreaded feeding tube, I was able to eat (and breathe!) throughout therapy and recovery, despite the fact that everything tasted like *&^%$#@. I’m firmly convinced that the exercises and discussions with my speech therapist made life easier for me. A few weeks after therapy I had a video swallow evaluation and passed with flying colors. Although it sometimes takes two swallows to do what one should do, the food remains “safe,” there are no obstructions, and I’m not aspirating (food passing into the airway instead of the esophagus).

My dieticians and speech therapist encouraged me, praised my efforts, understood what I was undergoing, and were forever patient. If on a rare occasion my question left them baffled, they checked further and got an answer. I didn’t need to go to group support meetings for cancer patients because they gave me all the support I needed. Besides, I knew what they were telling me was good medicine, coming from people I trusted, who knew my particular situation. Perhaps most important of all, I knew they wanted me to do well and cared about me.

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Head & Neck Cancer: A Personal Journey – #9 Side Effects of Treatment Other than Skin & Mouth

Posted on March 27, 2018 by Pat Camalliere

#9 Side Effects of Cancer Treatment – Other than Skin & Mouth

I shuffled into the kitchen in pajamas and robe about 8 am, as usual. “How are you doing this morning, hon?” Chris asked.

“About the same,” I rasped. My reply was unintelligible.

“Huh?” He lifted his head from reading the newspaper and blinked.

I pointed to my throat, shook my head. It was hard to get out more than whisper, but this would get better after I ate breakfast and used my voice.

Today I will discuss some other side effects that can occur with radiation and chemotherapy and my experience. Most of the side effects I experienced were described in the previous two posts and involved my skin and mouth. All else turned out to be minor.

Blood component changes, like anemia and magnesium depletion – Before each chemotherapy infusion my blood was tested to monitor the effects of therapy on my general health. This included a blood count to detect anemia, a comprehensive metabolic panel (to show potential problems involving my electrolytes, glucose, liver, kidneys, and more), the same tests I have with my yearly checkup. If they were abnormal, changes would have been made to my infusion to correct the condition. My tests stayed basically normal. I did not have to get a transfusion or deal with liver, kidney, diabetic, or other problems that can occur.

My magnesium level was also monitored before every infusion. Up to half of patients treated with Cetuximab experience low magnesium, which is needed for healthy heart, muscles, bones and nerves. It controls energy, blood pressure, blood sugar, and other body functions. My magnesium level never got low. If it had, I would have needed an infusion of magnesium prior to my Cetuximab infusion, as it takes too long to build up magnesium orally.

Bowel problems – I suspect almost every person having similar therapy will have some bowel habit changes, if nothing else with consistency and regularity. The trick was to figure it out as soon as possible and do what it takes to reverse bothersome symptoms.

Despite the fact that I faithfully drank eight to ten glasses of water a day, after my first infusion I had constipation. It might have been from the infusion, pain or nausea meds, or because I was eating very little food at that time. Likely it was a combination.

At first I managed constipation with prunes, eating both dried prunes and drinking prune juice daily. It helped but wasn’t enough, so I added a stool softener called Miralax. This is not a laxative, but adds bulk to the stool to make it easier to pass. It tastes a little unpleasant, but not bad. A full dose gave me diarrhea, and then it took a couple of weeks to get that under control. After that I stopped tolerating prunes and used only Miralax. I tried taking it alternate days, but eventually I found that what worked best for me was a half dose taken with dinner every day. I did that throughout therapy and recovery and had no further bowel problems.

Dental problems – During the course of therapy the salivary glands are affected. What saliva I had was very thick, and my mouth got very dry. Not only was this a problem from a comfort and ability-to-eat standpoint, but enzymes in saliva protect teeth from decay, so without saliva decay is more likely.

Before I started treatment I had a dental exam and began using fluoride rinses twice a day. I used fluoride through most of the therapy and recovery, stopping only for a few weeks in the middle of therapy when my mouth symptoms were too severe. Since my recovery is not yet complete, I can’t tell you if there is any decay, but I can say I haven’t noticed any problems.

Near the beginning of treatment I thought I had broken a couple of teeth or jarred a filling out of place because whenever my tongue passed over certain teeth they felt very sharp As it turned out, my tongue was just so sensitive that all tooth surfaces felt sharp. As the sensitivity decreased this went away.

I didn’t see my dentist during therapy and recovery because I had mucositis, and dental work, even cleanings, can cause problems like infection. It will be important to see him as soon as possible once cleared by my oncologist or if a dental issue occurs.

Dizziness, lightheadedness – I have a prior history of repeating bouts of vertigo and I suffer from mild dizziness and lightheadedness most days. I was worried this would escalate during therapy and took steps to prevent it.

I had been doing what I refer to as “dizzy exercises” since I had physical therapy for vertigo a couple of years ago. Once the severe symptoms cleared up, I tended to be lackadaisical about these exercises. I restarted them before therapy and did them religiously. They basically consist of tossing my head from side to side, like shaking my head saying “no,” while fixing my gaze on a spot on the wall. I do this for a minute at least twice a day, more when dizziness increases.

I also drank eight to ten glasses of water a day to prevent dehydration and avoided sudden movements, especially when getting up or lying down. I think this helped. Except for times when I was unusually tired, my dizziness remained under control through therapy and recovery.

General “wellness” – My body was undergoing an onslaught by the cancer as well as the treatment, so I didn’t expect to feel generally well. I didn’t feel as bad as I expected to.

I tried to maintain activity but rested when tired, as I was advised. Before therapy began and for the first month I walked daily on an indoor track for about thirty minutes, about a mile and a quarter. What stopped me was not my energy level but the fact that I developed cracks on my feet and heels and I didn’t want to irritate them further. That was one of the side effects of Cetuximab.

I live in a two-story house, and my energy never got bad enough to make stairs a problem. I found that when I sat for extended periods or napped I felt worse afterward, so I tried to stay busy most of the day. Each day, by late afternoon, rather than fatigue I felt generally unwell, my throat pain increased, and I felt a little nauseous. That was my signal to tone it down, and I would read, watch television, and complete my daily health-maintenance schedule. I usually stayed awake until ten or eleven in the evening, sometimes taking a nap in my chair, then regretting it when I woke up feeling bad.

My guess is that, as with the many changes I was undergoing, this general not-well sensation was a new way of feeling fatigue.

Hair loss – I had hair loss at my hairline, minor on the forehead and moderate at the back of my neck. I don’t think it was noticeable to anyone but me. My hair became coarse and brittle, especially my eyebrows, and my eyelashes got very short. I also had some thinning of hair on my legs and armpits. I did not attempt to shave during therapy and recovery. I was told this could be irritating, but mostly I didn’t because my skin was dry and leathery (snakeskin!) and I thought it would be difficult to do.

Hearing problems – Chemotherapy agents can cause some hearing loss, either temporary or permanent. Cetuximab usually does not do this, but the radiation field for my therapy included parts of the ear, or very close to it. For this reason, I had baseline hearing tests done before therapy. My hearing was good.

About two weeks after therapy I started to have an “underwater” feeling, as if my ears were plugged, followed in the next two days by tenderness and then a clear discharge from my left ear. My ENT was able to see me the same day.

I wanted to tell him we had to stop meeting like this, but I held my tongue. “What’s going on?” I asked instead.

He confirmed that my left ear was inflamed. He explained that my throat and other internal structures were experiencing burns internally similar to what I was seeing on my neck externally, and the swelling and inflammation were affecting my ears. He was concerned with what he saw on exam. I was given an antibiotic and eardrops, and this cleared up after about a week.

I didn’t notice any hearing loss throughout treatment nor during recovery. At this point I can’t say if I will have any hearing loss, because I haven’t been retested yet. I suspect it would be minimal, if at all, because I don’t notice any change.

Infusion or allergic reaction – Some people have allergic or other adverse reactions to chemotherapy, which would usually occur while the infusion was in progress. For this reason Benedryl is often given prior to an infusion. Reactions can be severe. I didn’t have any reactions. The only effects I had were slight lightheadedness and fatigue, except after the first infusion when I had nausea and muscle weakness hours later. After this I was given additional injections through my intravenous line prior to my infusion to prevent nausea. It worked.

Nausea and vomiting – I’m relieved I can say I never vomited during or after treatment! This had been one of the things I feared about chemotherapy, since I experience nausea easily and often, even in normal health. Except for the reaction to my first chemo infusion, I had nausea to some extent almost every day, but it was mild and was easily controlled by the oral medication I was given, which I took only when I thought I needed it. I rarely took more than one pill a day, and some days it was mild or transitory and I didn’t need medication.

Pain – I have already identified a number of conditions that were highly unpleasant and affected the quality of my life, but pain was not a significant factor for me. I suspect I tolerate pain more easily than most people. Which does not mean I don’t have pain, just that it takes a higher level to put me out of commission.

The splits on my fingers and feet could be excruciating, but if I avoided touching them I didn’t have pain—until I forgot and touched them accidentally, which seemed to happen way too often.

There were some days when my throat pain was bad, but really not much worse than with a bad cold. I had pain with swallowing most of the time, but less pain in the morning, and when I swallowed repeatedly, as with eating, it was better. On a scale of 1 to 10, my pain level rarely exceeded 6 and mostly was 4 or below. I took pain meds, but only Tylenol at 7 am and 2 pm, and Norco at bedtime.

The pain from radiation burns was worse, perhaps up to 7 or even higher when I touched the area or it was irritated by clothing. I touched it as little as possible, kept it well moisturized, wore soft fabrics with open necklines, and it was not painful when I did that.

At night I swallowed as little as possible, arranged my body such that the sensitive areas of my hands, feet, or radiation burns weren’t touching the bedding. I took a pain pill at bedtime just in case, and I generally slept well.

My oncologist felt my back and abdomen at each visit for tenderness. Some people have stomach pain, but I didn’t. I imagine this could be a factor for those who have not managed constipation and diarrhea well, that are eating the wrong foods, or that have reactions that involve their liver. I didn’t have any of that.

Since the esophagus and GI tract is lined with tissue that is susceptible to mucositis (see previous post) I did get some chest discomfort from time to time after eating that I attributed to heartburn, likely related to mucositis down into the esophagus. This was also in my radiation field. My pain was rare and mild.

I sometimes had a mild headache of short duration (under an hour).

I didn’t experience any other pain.

Voice changes – I experienced mild laryngitis and hoarseness from about week three of radiation therapy until the completion of radiation therapy. It was worse in the morning and late evening, better in the middle of the day. It was one of the first side effects to go away during the recovery period, and stopped by the second week.

Loss of appetite, difficulty eating and swallowing – I experienced these problems, which will be covered in the next post on Nutrition and Speech Therapy.

Unrelated health conditions – I didn’t get to be my age without developing some existing health issues. I was concerned that they might get out of control, despite continued medication, when my body was subjected to the rigors of cancer treatment. This didn’t happen, except for a minor issue with dryness and crusting in my nose (chronic sinus drainage) that got painful. This was cleared up with an over-the-counter nasal saline spray and Neosporin ointment.

I was able to avoid catching an infection by staying home as much as possible and washing my hands almost compulsively. There were things I would worry about later, like the cataract I knew would soon need surgery and upcoming dental work. I feared my blood pressure would soar, but it was measured regularly and stayed normal on my routine medications. I had a prescription for anxiety, but I didn’t need it after the first few days of treatment.

Whenever I got one of those unsettling events like a skipped heartbeat or jabbing pain somewhere, I put it out of my mind. I didn’t allow anxiety to kick in over imaginary complaints. I just couldn’t believe God would give me a problem on top of the cancer to deal with, especially with all my prayers and those who were praying for me. I must have been right, because all my health conditions stayed in control. (Thanks be to God and to all of you!)

Next post: Support Services: Nutrition and Speech Therapy

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Head & Neck Cancer – A Personal Journey – #8 Side Effects of Treatment – Mouth Effects

Posted on March 21, 2018 by Pat Camalliere

#8 – Side Effects of Cancer Treatment – Mouth

As I write this, every surface in my mouth is covered with slime and I have a metallic taste that will not go away. It is four weeks after I finished chemotherapy and almost three weeks after my last radiation therapy. This condition is called mucositis. It is caused by both chemotherapy and radiation therapy. Although it is highly unpleasant and with me the longest-lasting of any side effect, I have had little pain from it. I had been assured it was self-limiting and would eventually be resolved.

At my first visit, my radiation oncology nurse gave me a sample of a product called MuGard to deal with mucositis. He suggested I start taking it right away, to condition my mouth prior to treatment. When I took my first dose it was syrupy in texture and left a sweet taste in my mouth that lasted for hours and made me queasy. I was urged to use it anyway, and eventually it became just another part of my daily regimen.

I was also advised to see my dentist to identify any extractions, root canals, etc. that needed to be done right away. If present, it would be better to deal with these conditions first so they wouldn’t create a problem that could interrupt treatment. Also, since saliva helps prevent tooth decay and I would have diminished saliva from treatment, I would be more prone to decay. Therefore, fluoride was prescribed. I did not have any pending issues, and I began two fluoride rinses each day the weeks prior to treatment. I revised my oral hygiene habits by increasing the number of times I brushed and flossed, purchased a new Waterpik, replaced my regular toothpaste and mouthwash with Biotene (for anticipated dry mouth), and found the softest toothbrush I could.

I had been eating poorly since I found out I had cancer, and I lost about five pounds before treatment began. This was mainly due to anxiety, as I felt well at that time. My appetite was essentially gone by the second week of treatment. As treatment progressed, I tolerated fewer and fewer foods, until I was down to essentially oatmeal and Ensure. So from the beginning, eating was a serious concern, and anything that made eating more difficult was sure to have an impact.

The first mouth side effect occurred in my second week of radiation and ended with a laugh. I noticed after eating oatmeal with blueberries for breakfast that my tongue had turned black. When I asked my radiation therapist if that was a normal side effect, it caused a bit of consternation. My therapist called the resident radiation oncologist, who looked similarly baffled. It wasn’t from radiation, he told me, but he’d check further. After my treatment, he came back into the room.

“Were the blueberries frozen?” he asked.

“They were,” I answered.

As it turns out, little sacs in blueberries contain molecules that make them blue. Freezing breaks the sacs and releases the dye, which can stain the tongue. This does not happen when they are fresh, as the “milk” stays white.

I became known for a time as “the lady with the dreaded blueberry disease.”

During the following week I woke during the night with a thickness at the back of my throat. I panicked, thinking my throat was swelling, my airway would be cut off, and I wouldn’t be able to breathe. Although the sensation was only vague, the potential consequences were frightening. When I arrived the following day for my radiation treatment, I was first examined, then reassured. Yes, it was likely there was some swelling, but it would be highly unusual for this to impact the airway. I got used to the feeling and after a time didn’t notice it.

In the last post I talked about how both Cetuximab and radiation caused effects on the skin and mucous membranes. The mouth and entire gastrointestinal tract (esophagus, stomach, etc.) are lined with mucous membranes, contain the same type of cells as the skin, and are susceptible to changes for the same reasons. Most patients who have chemo and/or radiation for head and neck cancers are affected.

Mucositis covers the mouth with a sticky layer of secretions. It causes saliva to be thick and difficult to expel. The mouth may look slimy and shiny, the tissue glistens either red or white. There may be sores and a raw feeling in the mouth and throat. Putting anything in the mouth may cause burning or pain. It may be difficult to swallow. It can affect not only the mouth but also the throat and even esophagus. It can last not only through therapy but up to three months afterward.

Three weeks into chemotherapy, after two weeks of radiation, my mouth started to get sensitive and I developed a sore on the side of my tongue that made it difficult to chew without pain. I had the first sign of mucositis. I later developed additional sores on my cheeks. I kept biting them accidentally, but they were painful only when they were aggravated.

Later that same week I started having dry mouth and taste changes. I couldn’t eat anything dry, like bread or crackers, and if I didn’t move my mouth it felt like it was sticking together. After chewing for a while, I had to add water to what was in my mouth to be able to swallow it.

For a time, eating was an adventure. Everything I put in my mouth was a surprise—not unpleasant, just different. When I expected something sweet, it was salty. Salty things might be sweet, or bland. Peanut butter might taste like applesauce, applesauce might taste like eggs. I’d be prepared for a particular taste (I never lost my ability to smell), but never knew what I was going to get. It was like a game.

Gradually more foods got less appealing and I began limiting my choices. I had been eating hard-boiled eggs and biscuits daily, and thought I’d try egg salad one day. The mayonnaise made everything taste rancid. Before long most foods had a metallic, salty flavor that made me queasy. I picked the things least likely to do that, and wound up eventually with oatmeal, scrambled eggs, creamed soups, Ensure, cottage cheese, and pudding.

Next I noticed my tongue was not only sensitive on the side, but also on its surface. When I examined it in the mirror, it was not only reddened but had a deep furrow down the center. Some people have reported feeling like their tongue is going to burst, but mine never got that bad.

This photo is sort of like an emoji, isn’t it?
Redness and furrows in the tongue.
Can also see excessive dryness of facial skin in this photo.

 

By the end of the first month of therapy, my sense of taste was completely gone. Everything I put in my mouth tasted the same, metallic and salty, even water. The secretions in my mouth were very thick and nauseating. I had to use Zofran (my nausea medication) regularly until I could thin the secretions. The back of my throat, tongue, and soft palate felt swollen and tender. Soon I had to start taking pain medications (mostly Tylenol) regularly as well.

I’ve always been gun-shy about taking pain meds, but I knew how important it was to get a good rest at night. I had been encouraged not to deny myself pain meds, so I started to use them but with caution. At first I took Tylenol only before going to bed. Then throat and mouth pain started to get increasingly severe as the day progressed, so I took Tylenol at 7 am and 2 pm, and a Norco at bedtime. Pain meds made me more comfortable but didn’t help swallowing pain. Oddly, swallowing itself did, and it disappeared soon after I started eating.

At this point, four to five weeks into treatment, the mouth side effects hit a peak and I asked what else I could do. Help came with a clearer understanding of what each product was meant to do. The symptoms were multifactorial—a combination of ingredients, so to speak. Therefore, I needed to use each product for the symptom it was meant to fix, as no single products would address them all. Increasing regular use of salt rinses and MuGard made me more comfortable.

• Salt water rinses were effective against thick secretions. A salt rinse is made by mixing one teaspoon of salt and one tablespoon of baking soda in a quart of warm water. I gargle with it four to six times a day for at least a minute, then spit it out. I don’t put anything else in my mouth for at least a half hour afterward. I spit as much of the secretions out that I can after each use. The effect is not immediate, but when done frequently and persistently it thinned my secretions after about three days, made it easier to eat, and decreased my nausea. Robitussin also can be purchased over the counter to thin secretions but I thought it burned too much and saved it for a last resort.
• MuGard was effective in preventing mouth sores. MuGard was given to me by my radiation therapy nurse as a sample. It is not available in pharmacies, and the drug company was unwilling to sell it directly to me. Unless covered by insurance, it is probably not available. I did not have enough to get through recovery, but I do think it helped minimize my mouth sores, which likely would have been more troublesome without it. Those who don’t have access to it should ask their radiation oncologist for a recommendation.
• Biotene was used for dry mouth. Biotene is available over the counter at any drug store. I used both the rinse and the toothpaste. I don’t notice an effect when I use it, but I’m sure my mouth is better for having done so.
• A “stomatitis cocktail” was used for mouth pain. The “stomatitis cocktail” is a prescription mixed by the pharmacy. It is sometimes also called Magic Mouthwash. The components may vary somewhat according to the prescription. Mine consisted of lidocaine (a local anesthetic) and Benadryl for pain, and Maalox to coat the throat. I found it burned and preferred not to use it unless I had no other choice.

After trial and error, I was able to find a pattern that minimized my symptoms to some extent. I believe my symptoms were less than usual because I made the effort to follow a regime. Here are some suggestions I found helpful:

• Avoid foods that are spicy or acidic. Avoid alcoholic beverages and mouthwashes. Minimize caffeine. I limit coffee to one cup in the morning and add cream instead of drinking it black.
• Identify the convenient foods you can eat without difficulty and keep eating them. Don’t try to force foods that aren’t working when something else will work. If oatmeal and Ensure are all you can eat, then eat oatmeal and Ensure.
• Mix sips of water with food when the mouth is dry or you are having trouble swallowing. Swallowing may be more difficult. Sometimes it feels like a lump in the throat that doesn’t want to go down.
• Swallow consciously, with care and attention. If coughing or sticking of food occurs stop until it is controlled, then try again. If persistent, call your doctor. I had little coughing and minimal sticking, but stayed very aware.
• Don’t try to swallow foods of different consistency at the same time. It can help to drop your chin and mix the food in your mouth with water before trying to swallow it.
• I found that foods that were slightly warm were best for me. Some people like cold foods, especially milkshakes, but I couldn’t tolerate ice cream. Experiment, but avoid hot foods like the plague.
• It may be helpful to sip something, like warm tea.

Once treatment was finished, I was anxious to put everything aside and just get stronger. This didn’t happen. Some side effects continued or returned, such as skin dryness and splits, and most significantly mucositis. My theory is (my assumption, not based on medical advice), that the overpowering salty taste and slimy feeling are more acute because my sense of taste is returning, whereas they were masked when I couldn’t taste anything. Nonetheless, I was very tired of it all by then, and just wanted my life back.

Three weeks post therapy, my appetite has not returned, but my taste is starting to come back. Mucositis has turned my gums white and I have a constant unpleasant taste in my mouth. One night the salty taste was so overpowering I couldn’t sleep, and the thought of having to deal with this for months longer seemed impossible. This was an emotional low point for me, the only time I thought I wanted to give up. But things always look their worst while tossing and turning during the night, and in the morning I found a new determination, and it was a better day.

I wish I could sugar-coat these mouth side effects, but I’d be lying if I did. I’m finding them difficult, but not impossible. The thought that mucositis can persist for up to three months or even more after therapy is finished is depressing, but I’ve refused to believe the hard parts of cancer treatment from the very beginning, and perhaps that is a good thing because it’s helped keep me from giving up. I’d rather think I will be back to normal, it’s just around the corner now.

One thing that has helped me through these side effects, appetite, and eating difficulties is that I have never lost the ability to smell nor the desire for food. I don’t avoid thinking about food. I read recipes and see food commercials, remember the tastes, and look forward to enjoying them again. As I write this, although the mucositis prevents me from actually enjoying food, my sense of taste is slowly returning. I can recognize what is in my mouth, and I’m testing little bits of “forbidden” foods each day. Most don’t work yet, but I’m testing anyway.

I’m working toward my first Big Mac. Or lasagna. A glass of wine maybe. Or sitting in a restaurant. It will happen. The desire is there, and where there’s desire there’s a way!

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Head and Neck Cancer, A Personal Journey – #7 Side Effects of Cancer Treatment – Skin Effects

Posted on March 13, 2018 by Pat Camalliere

#7 – Side Effects of Cancer Treatment – Skin

The effect I want from cancer treatment, of course, is a cure. I want all existing cancer and any microscopic seeds traveling through my body gone forever, and good health restored. I am fortunate to live today instead of twenty years ago when the outcome for my type of cancer was not as good. Today squamous cell cancer of the base of the tongue is one of the more curable types of cancer. Non-smokers and cancers that are HPV-related, like mine, have higher survival rates.  But the cancer I have has a tough treatment course.

Both Cetuximab and radiation therapy cause various changes during treatment. These were fully discussed with me before treatment began. Nonetheless I was surprised at how difficult some of the changes were to experience. I could not make the changes go away, but the methods and precautions I followed I’m sure made them more livable.

I was told that both Cetuximab and radiation would cause skin changes. It was many years since I took a degree in biology, but when I read that Cetuximab worked by affecting epidermal growth factor receptors, it made sense to me that skin effects should be expected. The epidermis is the outer layer of tissue that lines organs, membranes, and the skin. It is made up of epithelial tissue, most importantly of squamous cell tissue, and squamous cell cancer is what I have. Cancer treatment kills cancer cells, but some healthy cells are damaged too. It seemed likely that my skin would undergo some changes, and I probably wouldn’t like them.

I am of Irish and Polish descent, born blond with fair skin and blue eyes, and my skin has always been sensitive and burns easily. I knew I had to be even more careful than most people if I didn’t want to suffer.

To prepare, I searched my wardrobe for soft items with low necks and pockets to carry tissue and my cell phone. I wanted to avoid as much irritation, especially around my neck, as possible. I ran my personal laundry and bedding through a second rinse to be sure all soaps were removed. I stopped using liquid cleaners, which are more drying, in favor of a mild bar soap without fragrance or other additives.

I had been advised that my appearance would change and that I would probably not want to make public appearances. I got my hair cut as short as possible so I didn’t need to use hair care products around my sensitive skin and I could style it easily. Also, as I had been told to expect changes to my nails, it was advisable that I avoid potential damage to nail beds from nail polish and possible infection from professional manicures or pedicures. I cut all my nails short in anticipation at the very beginning, so I didn’t have to deal with nail care throughout my therapy, except for creams and occasional filing.

My therapy took place in the winter, so it was impossible to avoid fabric near my neck, but I did my best. I realized I could wear V-neck and low-neck tops backward if it helped to keep the larger areas of rash away from fabric. Of course, the winter also caused more dryness in the house, so I had to deal with that too. To keep my skin and mucous membranes moist, I started using a humidifier at night, placed near my bed. One benefit of treatment in the winter is that it is easier to avoid sunlight, which worsens skin changes.

I have never liked to drink much water, but staying hydrated was too important now. I got a quart-sized drinking container to measure my intake, started from the very beginning, and stayed with it throughout.

I was given skin creams to start proactively to minimize changes. I was told to be sure I removed skin creams two hours prior to radiation treatments, as creams could cause the burns to be worse. I had to avoid creams and jewelry below my eyes to my mid-chest, as the areas between would be radiated. Even Chapstick was a no-no. Mostly I wore only eye make-up.

I had to forgo the hot showers I loved in favor of warm showers, and I had to pat my skin dry instead of rubbing it. I must admit that I rewarded myself with a slightly warmer spray on unaffected parts of my body only for a minute before exiting the shower.

The first side effects I had were skin changes. They began about two weeks into treatment with the tips of my fingers. First I had a painful hangnail, then the skin next to my nail beds started to split. It looked like small paper cuts that would not heal, but was considerably more painful. I found that covering the splits with a bandage stopped the pain, but each took a couple of weeks to resolve, and by then I had more. My oncologist suggested the use of liquid bandage, and that was easier to work with, although each split still lasted a week or more and I usually had two to five going at a time.

The next skin change was extreme dryness, which did not respond to frequent applications of skin lotions. First was my face and hands, then my elbows, tops of my feet, and my ankles. I developed cracks in the creases behind my heels and could no longer wear shoes with backs. My cheeks and chin were bright red and painfully dry.

I found that skin lotions I had been using burned when applied, and changed to a thick cream that was free of alcohol, dyes, fragrances, etc. It was recommended to me by my daughter-in-law, Clare, as suggested by her dermatologist sister-in-law. The brand I used is called Vanicream. It’s not the only one that will work, but it was better than other products and did not burn. I have been told Aquaphor is also good.

My fingertips became furrowed and waxy, not uncomfortable, just strange, like living with thin rubber gloves. I couldn’t grip well, or turn pages, and my iPhone no longer recognized my thumbprint. Things like opening and closing zippers, taking the tops off pill bottles or food containers, and turning lamp switches got hard to do. This continued through the entire course of my therapy and afterward. 

Dry skin, furrows, waxy fingertips, and splits.

The skin on my hands was very dry, thin, and wrinkled. For about a month this was quite uncomfortable, until I remembered an old remedy that dates back to when women wore white cotton gloves regularly. The remedy was to cover the hands with Vaseline at bedtime and sleep in the gloves. I had recently washed some vintage gloves, hoping to get the stains out and take them to an antique shop. When the stains couldn’t be removed, I planned to throw them away, but fortunately, I hadn’t done so yet, and a quick search of the basement found them. I lathered my hands with cream and started wearing gloves whenever possible. It worked wonders and cleared up my hands in less than two weeks. It was so successful, I found myself wearing them during the day. The skin on my hands was so thin that anything that had a sharp edge was painful, and I found I could open containers and even type with them on, which kept my laptop keyboard from getting slimy with cream.

Cetuximab rash and hair loss at hairline.

About week three I developed what is called a “Cetuximab rash” on the back of my neck. I had been told that 90% of patients on Cetuximab develop an acne-like rash on the face, neck, back, chest, or arms, and I had been given steroid and antibiotic creams to treat it when it occurred. I didn’t realize how itchy it would be. Of course, you can’t scratch it, so getting the itching under control required another medication. I was also cautioned not to use hot or cold packs on the rash. Later I developed the rash on my chest, fortunately to a lesser extent. The rash stayed with me throughout treatment. At the same time as the rash I lost hair at my neckline. I did not lose any other hair, but my hair did become brittle, coarse, and dry. By the end of treatment the back of my neck was very raw, red and irritated.

By the last few weeks of infusions I had learned to alleviate these symptoms as much as possible, but then the remaining skin on my body started to claim equal attention. I had been unable to walk in shoes with backs due to sores in the cracks behind my heels, but now the skin on my arms, upper legs, buttocks and back started to roughen and develop a snakeskin or fish scale texture. It wasn’t painful at all, but rubbing my hands over it, it just didn’t feel like me. The writer in me fantasized a transformation into a SuperSnakewoman, or some other Superhero. I wondered what superpowers such a person might have: the ability to sneak up on an opponent unheard, coil around it, and engulf it perhaps. By this time I just threw my hands up at yet another insult, and promised myself I would return to normal soon.

“Snakeskin”
This is my thigh.

Along with this, I started to develop a waxy texture on the bottoms of my feet, similar to what had happened to my fingertips. I got some minor cracking too, and intensified my foot care by adding a foot cream daily. This had to be rubbed into the nails as well, like I do with the hand creams, to minimize nail changes. It had to be done carefully to avoid further cuts on the thin skin of my fingertips, so prone to injury. The other caution was that the waxy texture made it slippery to walk in bare feet.

 

I hadn’t wanted to believe I had cancer at the very beginning, and I also resisted believing that my side effects would be of real consequence after treatment was over. Surely when treatment was completed the worst was over. I was wrong again—not quite. Radiation effects are cumulative and continue to get worse for a couple of weeks after therapy is done.

Up to this point, my skin changes were all due to chemotherapy, but about two weeks before my last radiation therapy session I started to get radiation burns in the treatment area. This continued to increase in size and severity until weeks after the radiation was done. As of this writing, ten days after finishing radiation therapy, it is still getting worse, but I was told it should begin getting better soon. 

Radiation burns began in last two weeks of radiation therapy.

 

It looks quite bad, with redness, blistering, itching, and pain. However, it is no worse than a bad sunburn, which most of us have had at one time or another, and I knew I could get through it.

 

 

Radiation burns ten days after last radiation therapy treatment.

Like any burn, the area is tender and itchy. I was given a silver ointment to use twice a day that has an antibiotic in it. I also soak the area with a Domoboro-like solution three times a day which has a soothing effect. Between these treatments I put on a thick cream (the one I use is Vanicream) every two hours. I usually add another layer at least once during the night as itching wakes me up.

I’ve had many emails from those of you who have been reading my posts, telling me how brave I am. I don’t think of myself as brave. I’m just someone who wants to live, and I want to do whatever it takes to increase those odds. I want not only a successful arrival of my journey, but to make the difficult trip as easy as it can be. I hope my words and the photos do not discourage anyone, but rather that other cancer patients and those who love them understand what needs to be faced and are inspired to keep up the effort.

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A Personal Journey Through Head and Neck Cancer – #6 A Day in the Life of a Cancer Patient

Posted on March 6, 2018 by Pat Camalliere

A Day in the Life of a Cancer Patient

Before my first radiation treatment I was told I could make the next few months easier if I did certain things. “Start now. Prevention is key to success.” I wanted an easier journey, so I agreed enthusiastically.

“Tell me what I have to do. I’ll make it happen.” I was committed to do my best. I very quickly found it was a lot more than I expected, it was not all easy to do, and it was hard to work out a schedule I could follow without forgetting.

Why? It’s not just appointments, but activities that are recommended to minimize side effects proactively and later to treat the side effects when they occur.

“Put this lotion on twice a day. It will help with rashes and radiation burns. But don’t put it on two hours before you have radiation therapy.” Sounded simple enough.

Then: “Use this mouth rinse four times a day. Don’t put anything in your mouth for 30 minutes or longer afterward.” Okay—that’s two hours though….

“Salt rinses will help. Follow this recipe, use it four to six times a day, and nothing in your mouth for a half hour after.” That’s another two or three hours. Hmmm—this is adding up.

“Eat six small meals instead of three large ones.”

“Get out and walk if you can. Thirty minutes a day is ideal.”

“Speech therapy exercises three times a day – each session will take 15 minutes.”

“Brush your teeth every time after you eat, and swish with Biotene rinse.” I’d used Biotene in the past. I hadn’t noticed a difference, but I’d try again.

“Take these new medications. Some are once a day, some twice, some every six hours, some as you need them.”

Then there are appointments at the hospital. Three to four hours are taken up Monday through Friday getting to and keeping appointments with a variety of health care providers and one entire day when radiation therapy and chemotherapy fall on the same day.

What about medications and routines I was doing before I started cancer treatment? Got to keep those up too. I was on medication for hypertension, elevated cholesterol, and esophageal reflux. I do exercises to prevent episodes of vertigo. The thought of getting an episode of vertigo on top of nausea and dizziness that might occur during my therapy was terrifying. I had to fit that in my schedule.

Being a head and neck cancer patient is a full time job. I don’t know how anyone can continue to work and fit in all that needs to be done, but apparently some do, and I admire them.

Some activities had to be done in a certain order or spaced appropriately. I couldn’t do this until I did that first, and once I did that I had to follow with something else. If I rinse my mouth right after I eat, what about those pills that are due? I’ll have to wait another half hour; better move the pills up to before the rinse or I’ll end up taking them too late in the day. Much of what I need to do relates to some other activity. I’d begin something, then find out it was in the wrong order and it sets me back. The schedule started at 7 am and wasn’t finished until 10 pm. By 2:00 pm I’d find I wasn’t finished with the 10 o’clock hour yet.

For me the solution was a written schedule and check-off list. I wrote down everything I had to do and how many times I had to do it, gave each item a line and a time, and printed out a spreadsheet with boxes to check off what I did and mark what I missed.

I learned to juggle things that could be done simultaneously. For instance, since I have to wait 30 minutes after some rinses, I filled that time with other activities that did not involve putting things in my mouth, like taking a shower or riding in the car. I found that drive time was a good time to get two sessions of speech therapy done, one on the way to the hospital and one on the way home. Only one more session to fit in—yay!

I put “mouth” activities in a progressive order: eat first, then brush, then take pills, use mouth rinses last.

This was all very confusing at first, so I didn’t even try to make the schedule a permanent thing. I knew I’d be changing it as my side effects changed, new things were added, or I found a better order. So I printed a week at a time, made notes as I went along, and I printed a new schedule each week incorporating additions and discoveries. This turned out to be a smart decision.

It would serve no purpose to go through every step in my schedule here. My list has shortcuts only I understand. I included it below as an example to demonstrate the complexities. There are too many variables, and no schedule could fit every patient. Not only is each treatment different, but each patient reacts differently, has different concerns, different side effects, different personal schedules, etc. I sometimes wished I had a secretary and someone to stand over me and crack the whip. Chris was a tremendous help, but I felt I had to be in control of my day-to-day schedule.

I knew my life was going to be very different for a few months, and the sooner I accepted that and took steps to accommodate the changes the better off I would be. Not everyone will be convinced at first that a check-off list like mine is necessary, but I believe working a schedule out on paper is well worth the time and effort spent. Many people get through busy days with no need for written lists, or set timers on their Apple watch. It’s a different situation when trying to do it all while worried, unwell, and when changes occur frequently throughout the course of treatment. I’m willing to bet most people will get confused or forget a good deal of what can help as treatment progresses. Progress it will, and can result in a more difficult therapy than needs to be. The sooner a person becomes an active participant in their therapy the more likely it is that the course can be made more comfortable throughout. Tools like lists can help.

Here’s what my spreadsheet looks like. I carry it from place to place during the day so I don’t forget to check things off when I do them. Even after following my schedule for a couple of months, I still find it just as easy to forget I’ve done something and do it again as it is that I’ve missed something.

It will do no good to copy my list, since it’s good for only one person—me—and it’s a constant work in progress. I certainly don’t get anything like 100%. There are zeroes on my check-list, but that’s okay, because everything I do helps. Each day is different with different challenges and surprises. I do the best I can, and I believe it made a difference.

My personal checklist, middle of treatment.

In addition to a checklist, I also keep a journal of sorts. I use a composition book, and each day I put the date and day of the week on the top of a new page. As the day progresses, I write down things that relate to my disease: how I felt, when I started something new, when a new symptom started, what I eat (some detail here), a calorie count, etc.

Here is what a typical day looks like:

January 12 —Friday

• Slept fairly well – awoke alert about 4 am, mild headache, very mild nausea, no other effects. Fell back to sleep about 5:30 and slept to 7:30.
• Breakfast – 1/2 serving oatmeal (75 cal), 1 tsp butter (30 cal), 1/2 tsp sugar (10 cal), blueberries(40 cal), wheat toast with peanut butter (200 cal), coffee with cream (30 cal). = 380 calories
• My tongue is black. Will talk to doctor about this.
• Had a small, difficult BM.
• Lunch – Peanut butter, jelly and cheese on roll. = 250 calories
• Snack – Ensure = 220 calories
• Dinner – fish (100 cal), mac and cheese with tuna (200 cal), 1/2 milkshake (250 cal) = 550 calories
• Radiation therapy session #2. No side effects.
• Walked 30 minutes around hospital for exercise.
• Felt okay most of the day, less so after 6 pm.
• Had a brief period of warmth in my upper chest, stopped spontaneously and no other symptoms.
• Snack – crackers and cheese = 175 cal

Total calories = 1575

I started this because it was stressed from the beginning that my eating habits were going to change significantly through the course of my treatment and I needed a way to determine if I was getting enough nutrition and how that was affecting my life. It’s very bare bones, but I can easily look up what is needed to answer questions from my medical team, and I know what goals will help me stay on track.

My third “tool” is a notepad I bring to appointments. Whether I’m seeing one of my doctors, nurses, or therapists, there is always useful information I can incorporate into my schedule, as well as changes and progress to track. I have a pretty good memory, but despite that I’d walk out of the room with two or three key things on my mind and forget many others if I didn’t take notes during my appointments.

In case you’re wondering about the black tongue mentioned above, I’ll explain that in next week’s post: Effects and Side Effects of Cancer Treatment. That post will give details about why it is beneficial to participate actively in cancer treatment.

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My Personal Journey Through Head and Neck Cancer – #5 – Chemotherapy

Posted on February 27, 2018 by Pat Camalliere

Chemotherapy/Immunotherapy

My oncology team recommended, in addition to thirty-five radiation treatments, eight infusions of Cetuximab.

Cetuximab is not the only medical (pharmaceutical) option for treatment of head and neck cancers. Other agents, such as Cisplatin, fluorouracil, Paclitaxel, and more, are used depending on each specific patient and recommendation of the oncology team. In my case, Cetuximab is considered to be effective for advanced stages of squamous cell head and neck cancer. The benefit for me is that it has fewer side effects than Cisplatin, which would be the next choice.

Surgery, radiation and chemotherapy were all considerations for my disease. I wanted to know why I needed chemotherapy in addition to radiation therapy.

Although surgical advancements are being made at a rapid rate and my surgeon has my full trust, surgical treatment can carry a risk for significant function and cosmetic disability, such as loss of the larynx (voice box), and/or mandible. My surgeon never suggested I begin with a surgical option, as he felt there were successful ways to treat me that would avoid such risks. If any cancer remains after my courses of radiation and chemotherapy, I was told surgery could be an option, but would be limited to specific areas of known disease and less extensive. We hoped no surgery would be required, and this was a better option in my mind.

Radiation is directed to areas where I have known disease and areas where the disease is most likely to spread. Fortunately, doctors today know a lot about how squamous cell tumors at the base of the tongue spread to defined areas, and those are the areas that receive attention.

My PET scan showed that my cancer has not spread past my neck. It has looked at other areas where this cancer spreads, such as the lungs. I don’t show cancer in these areas, or anywhere else that was not already known. So far, so good.

But might there be areas of microscopic spread that do not show? Not likely, but not impossible. This is where Cetuximab comes into play. Cetuximab will improve the effectiveness of radiation therapy, and thus the success of my cure. Cetuximab (Erbitux) is a chemotherapy agent called a monoclonal antibody that kills cancer cells in a different way.

How does it do this? This question is best answered by oncologists, but a brief explanation would be that what a monoclonal antibody does is work with the body’s own immune system to attack cancer cells. It does this by blocking the function of a protein carried in cells that causes the cells to grow and divide (EGFR, or epidermal growth factor receptor.) When introduced into the body, Cetuximab will bind with and “tag” the cancer cells so that the body’s immune system seeks out and kills the cancer cells.

One can see that man is working hand in hand with God here. The medical scientist finds a way to prompt God’s handiwork to do the job, and we marvel at the result.

I have already described my first infusion, but now will provide more detail.

My infusions will take place once a week but I have radiation treatments daily Monday through Friday. Since “chemo day” happens on the same day I have a radiation treatment, it’s always a long day. I prepare for that by packing a little insulated bag with what I need for the day, and assemble comfort items for waiting periods. The bag was a gift from a friend received from an organization called #BetterEveryDay that supports people receiving cancer treatment. You can locate them on Facebook.

I bring a snack, lunch, a spoon, some containers with mouth rinses, skin lotion, hand sanitizer, and any medications I will need throughout the day. The infusion nurses will provide me with water and tissues, and will give me a warm blanket, but I find it helpful to also bring a throw or sweater. I dress in comfortable clothes.

Although I’ve not had a problem, some of the medications I am given may cause drowsiness or make me ill, so Chris does the driving. This allows me to get some things done while he drives, like using a mouth rinse or doing speech therapy exercises. Only one guest is allowed in the infusion room.

I bring something to entertain myself during the wait, usually my Kindle and my iPhone. There will be time between appointments and the infusion will take up to two hours.

When I enter the large waiting area, I sign in at a kiosk and receive a registration number. When my number is called, usually only a few minutes, I proceed to one of ten registration stations. An attendant looks me up on a computer, finds my registration, and confirms my name and birthdate. An appointment packet is printed and handed to me, I am signed in, and I return to my seat, waiting to be called for lab tests.

Soon a medical assistant calls my number and I follow the assistant to a room where my blood is drawn. Two tubes are taken. The lab will do a blood count, blood chemistries, and a magnesium level, since Cetuximab depletes magnesium. After my blood is drawn, I return to the waiting room again.

Before long I am called to an exam room by another assistant who takes my temperature, oxygen, weight, and blood pressure. A nurse practitioner then enters the room and goes over my condition, complaints, and answers questions, entering all the information into a computer. She then listens to my heart and lungs, examines my mouth and any areas of concern I may have, and checks my back and abdomen for tenderness. She spends as much time with me as I need until all questions are answered.

My oncologist then comes in, having reviewed the information, does another examination, and answers any additional questions. By that time my blood tests have been completed, and the infusion for the day is ordered, the dosage calculated and sent to the pharmacy to be prepared. I have been told that multiple checks of doses are done between the doctor and the hospital pharmacist to insure accuracy.

I then walk over to radiation therapy for the day’s treatment, and then return to medical oncology. I check into the infusion laboratory and wait to be sent back to the infusion room (pod). I make use of time between appointments to eat a snack, take medications, apply skin lotions, or complete other items on my daily care list I can fit in. My waits are relatively short, and I move quickly from one appointment to the next. Nonetheless, I am beginning to feel the effects of a long day.

I am greeted by the infusion nurses and taken to a reclining chair. There are ten “stations” in the room, some more private than others.  I place my belongings on a guest chair and make a trip to the restroom. I know that the fluids that will be “pushed” into me in the next couple of hours are going to make me uncomfortable if I don’t start with an empty bladder, and, in fact, maybe even if I do.

When I return I settle into my recliner, put my feet up, and wait for my nurse to put in an IV catheter. I watch her assemble what she needs, use sanitizer on her hands, and put on gloves. She looks at the backs of my hands and wrists to select a vein, and scrubs it with an alcohol wipe. The catheter is flexible and very thin and I only feel a momentary sharp pinch. I am fortunate that I have good veins in both hands, so this almost always goes smoothly for me, and I have little discomfort. She tests the line by flushing with a syringe of saline, and pulls back to be sure blood returns into the syringe to assure it is working properly. Sometimes this feels cool.

The nurses are friendly and we chat while this goes on, getting to know each other. One of them is someone who worked with me years ago and we catch up, sharing memories and laughs. The atmosphere is light and positive.

Once my IV line is inserted, I am given pre-infusion medications. Before this is done, I am asked to identify myself, my wrist bracelet ID and my medications are scanned into a computer on a rolling stand. It is reassuring to know that this precaution is taken and I cannot be given the wrong medication in error. I receive three pre-infusion medications through the IV: Benadryl prevents allergic reaction to Cetuximab; Decadron helps to control nausea and boosts the effect of Cetuximab; and Aloxi is given to prevent nausea.

Many patients will need only the Benadryl. Nausea is not a common side effect of Cetuximab, but I am exceptionally sensitive to nausea and vomiting. My first infusion demonstrated that. This is not just a comfort issue, as nausea will prevent me from eating, and eating is vital to the success of my therapy.

The three syringes are injected into my IV. Aloxi will burn if it is injected too quickly, I discovered, so I remind my nurse to inject slowly, and there is no sensation except sometimes of coolness. After this is done, I will need to wait up to thirty minutes for the medications to take effect.

When the time is up, two nurses arrive with a small bag of clear fluid, which is my infusion of Cetuximab. It has been prepared in the pharmacy shortly before my arrival. Again the bag and my wrist ID are scanned, and one nurse repeats my name, reads the label on the bag, and sets the program on the pump that dispenses the Cetuximab, while the other nurse confirms the information with the order in the computer, the settings on the pump, and records the details of the infusion. Check and double-check. The bag of Cetuximab is hung on an IV stand, attached to the pump and to my IV, and Cetuximab begins to drip slowly into me. I don’t feel anything unusual during the infusion, which will take an hour.

Although I’m prepared with reading material and the general atmosphere is relaxed, I find that I have little desire to read, despite the fact that I am a lifelong avid reader. I usually unpack and eat whatever I have brought for lunch, and then I generally lean back and shut my eyes. I may check or send emails or texts, and sometimes I sleep briefly. Although the hour usually goes by quickly, I may need to make a trip to the restroom. This may seem awkward, but the infusion pump runs on a battery and is easily unplugged, allowing me to roll it to a nearby restroom without assistance.

When the infusion bag is empty, the pump beeps and the nurse returns to disconnect me, remove the catheter, and send me on my way. By now it is late afternoon or even early evening, my day is done, and Chris and I head out to fight rush hour traffic. I will eat something as soon as I get home and check off everything essential on my daily medical to-do list, as I am tired now and will want to crash at the first opportunity. And I do just that.

I must stress again that every patient has a different experience. Some feel weak or ill after chemotherapy, but I found that the premedications I was given before my infusions actually gave me two days when I felt a little better, since I was free of nausea and the Decadron gave me a little energy boost, although I was also a little “fuzzy” in the head.

Next Post: A Day in the Life of a Cancer Patient

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My Personal Journey Through Head and Neck Cancer – #4 – Radiation Therapy

Posted on February 20, 2018 by Pat Camalliere

Radiation Therapy

What treatment options were there for my cancer? Surgery, radiation, and chemotherapy are all used to treat cancer. Surgery removes areas of cancer directly by cutting them out, but what if the area is hard to get at or would be disfiguring, as in my case? Radiation therapy is targeted. It kills cancer cells and normal cells, but only those in the field of radiation, not the whole body. Chemotherapy uses a variety of medications to treat the whole body to kill or stop the growth of cancer cells and prevent their spread to other areas of the body. Some people need surgery, some need chemotherapy, and some need a combination of these therapies.

There are many ways therapy can be delivered, and many factors to be considered by the cancer team. Timing and whether or not radiation is given at the same time as other treatments depends on the type of cancer and other factors. Some patients need radiation before surgery to shrink the size of the cancer, some during surgery. Sometimes radiation is used to kill cancer cells that may remain after surgery. Or surgery may not be recommended at all.

When I was first given my treatment options, I was uncertain. I worked in health care administration for thirty-seven years and have a fair understanding of medical issues. One thing I learned was to know when to stop torturing myself with questions and let the medical professionals do their job. Being personally involved in your care means understanding and cooperating with the team, communicating with them freely, and letting them advise you.

Trust is a big part of this process, and should be developed as soon as possible. For this reason, I never spent a great deal of time looking for answers on line, but instead I asked my doctors directly and got answers that pertained only to me, not some patient having an entirely different experience. Therefore, what I am writing should be taken in that light; my experience is a single experience which will differ for everyone.

Not all head and neck cancers are treated with radiation the same way or using the same machines. Some machines use straight (linear) beams; others machines use beams that travel around the treatment area and send radiation at the cancer from many directions.

Whether to use radiation therapy and the type of radiation therapy depends on many factors; not just the type, size and location of the tumor, but factors such as how close it is to other areas of the body, general health, and age.

Although in some cases large regions at risk for containing cancer cells are treated in wider areas of the body, my doctors felt it was safe to treat me more selectively, concentrating on the areas of known cancer at the base of my tongue and in my neck. Although the majority of my neck would be treated, lower doses of radiation would be used to elective areas, higher doses to those with known disease. I would have surgery only if any cancer remained after treatment.

The challenge of radiation therapy is to kill all existing cancer cells while harming as little as possible of normal, healthy cells. This is very important for cancers in the head and neck, since there are many vital structures in the area that need to retain normal function if at all possible. Think about everything that happens in the mouth, throat, and neck.

The mouth contains not only teeth and tongue, but also gums, mucous membranes, salivary glands, bones of the lower face and jaw, muscles, blood supply, and nerves. The tongue determines how food tastes, and the salivary glands produce a fluid that mixes with food during the chewing process to prepare it to be swallowed as a ball, or bolus. The tongue is also involved in speech, chewing, and swallowing. None of these are things I want to do without.

The neck connects the head to the rest of the body, providing pathways for circulation, nerves, breathing, and digestion. Major arteries and veins supply circulation to the head and neck, including the brain. Major nerves, including the cranial nerves, control sensation, movement, and organ functions in the head and neck, such as hearing, smell, and taste. Lymph nodes and ducts are along the cervical spine, face, and jaw. The neck also contains muscles, bones, skin, and thyroid and parathyroid glands.

In the throat, or lower neck, the pharynx connects the mouth to both the lungs and the esophagus, separated by a structure called the epiglottis, which shuts during swallowing to prevent aspiration into the lungs. The larynx, or voice box, is in the lower neck.

My primary tumor, at the base of my tongue, is in close proximity to many of these structures, including the taste buds, the salivary glands, and the epiglottis. I really want to be able to taste my food, have saliva, and be able to swallow. I have been told there will be some impairment during treatment, but my targeted treatment should allow most of the function to remain or return.

Radiation is a beam of energy, and beams travel in straight lines. Knowing this brought up a lot of questions in my mind. How does the beam destroy cells in the back of my mouth without taking along everything it passes through, like my jaw, my teeth, the back of my throat, the roof of my mouth? What about the cancerous lymph nodes that are penetrating some of my neck muscles? They are more superficial, but to what level will the beam be directed? Will it go past and destroy the muscles in my neck or other structures? Some affected nodes are under my jaw. What happens to that bone? Will I lose teeth? Will there be any effects on my brain?

This is where I trust my radiation oncologist and today’s remarkable technology. When I had my pretreatment simulation, a careful slide-by-slide delineation process was used to define the treatment field and pinpoint the exact places on my body where radiation beams will be aimed.

Based on a CT scan that was taken the same day I had my mask made, my radiation oncologist worked with radiation dosimetrists and physicists to create my treatment plan. He marked critical structures of my anatomy, areas to be treated, and how much dosage was needed for each area of treatment. The criteria were calculated over a two-stage, thirty-five dose plan by radiation dosimetrists, and approved by radiation physicists who checked the calculations and took responsibility for quality assurance. When all three agreed on the plan, it was run on a phantom patient on the same machine I am treated on.

All of this took place in the week between making my mask and my first treatment. I found this not only impressive but reassuring. I was bound to do well with this level of planning going into my care.

My machine is a tomo therapy unit. It delivers many small beams of radiation at my tumor from different angles for the best distribution of dose.

The radiation will not kill cancer cells immediately, but they will continue to die over the course of treatment and for weeks or longer after my therapy is done. I receive radiation therapy every Monday through Friday for seven weeks. On Saturday and Sunday I rest and any normal cells in the path of delivery have a chance to recover.

I have already talked about the making of my mask. Here’s what it looks like:

Radiation Therapy Mask

Me in my mask with radiation therapists, Tomo Therapy Machine

 

 

 

 

 

 

 

 

 

Two receptionists greet me when I arrive. I don’t have to tell them my name. They know me and attach an ID bracelet to my wrist. We pass the time of day, then Chris and I take a seat in the waiting room until I’m called.

My radiation therapists feel like friends and I’m happy to see them. I trust them completely. I remove my upper clothing except for the tank top I wear beneath. I climb onto the table, and I’m covered with a warm blanket, very welcome because this room is always cold. “Are you ready?” I’m asked.

The techs place my mask over my face and fasten it to the table. It’s very tight. I can’t really open my eyes fully, but I can see enough through my partially-opened eyes should I want to. Most of the time I only peek and keep my eyes closed. I can feel the mask press against my nose, but can breathe normally. I can barely wiggle my lips, but I can be heard if I want to say anything through slightly parted lips. My shoulders are held tight against the table, but my arms are free to tuck under the blanket. I have an oxygen monitor attached to one finger.

The techs leave the room. I know they are in a control room with full view of me on a monitor. They have told me to move my legs violently if there is any problem and they will stop the test and attend to me. This is reassuring.

When I asked, one of my therapists showed me what is done in the control room. After I am immobilized on the table, a CT scan is taken to get that day’s exact position. This is overlaid and matched with the details of my planning CT, so that each area to be radiated gets the accurate dosage for that day. There are multiple areas of delivery, and multiple “slices” of CT images to be matched. After the therapist completes the matches, the second phase of the process, the delivery of radiation, is done.

Me, being immobilized in Tomo Therapy Machine by Radiation Therapists

Control Room for Radiation Therapy

 

 

 

 

 

 

 

 

 

Soon I feel the table move, drawing me into the “donut” or “bore.” There is a whirring sound, and then a loud clunk as the CT scan begins. I try not to move a muscle while the scan is taken. I want to clear my throat, swallow, or wrinkle my nose, but I do my best not to. I’ve been told this won’t affect the scan, but I always err on the side of caution and try to minimize any movement. After about three minutes, the table moves again, withdrawing me from the donut. The scan portion of the procedure is done. I remain on the table while the therapist matches my daily session to the exact position I am in today.

After a couple of minutes, a brief rattling sound tells me the radiation delivery portion is about to start, and I am drawn back into the donut. Soon the rattling starts again, becomes continuous, and circles around the donut. I have been told the sound is from opening and closing of gears in the bore that direct the beams to each precise programmed location. The treatment part of the procedure lasts about seven minutes.

The rattling makes me think of an American Indian shaman or medicine man. I included a medicine man in my book, The Mystery at Black Partridge Woods, so this makes me smile. The sound is one I end up anticipating and welcoming, a pleasant and familiar sound that tells me I am on my way to curing my cancer. I envision a scantily-dressed man with a rattle behind my head, ceremoniously conducting his healing ritual.

I understand that some people feel claustrophobic both due to the mask and being drawn into the machine. I found the confinement of the mask reassuring and somewhat comforting, like swaddling must feel to an infant. I am a control freak who doesn’t like anything taken out of my hands or being confined, so I thought laying in the machine might make me anxious. But I can see enough of the room that being in the bore is not alarming. Perhaps I don’t feel confined because I know how important stillness is to the success of my treatment, and know it is the confinement that helps me stay still.

To prepare myself in the event I became claustrophobic, I studied some meditation techniques, and I tried them at first but soon I didn’t use them. Instead, I like to do something routine that calms and slows my heart rate and allows me to measure time. I found that prayer was the ideal method for me. I have the reassurance of seeking help from heaven at the same time that the routine repetition of the Our Father, Hail Mary, and Glory Be, much like counting sheep, relaxes me. I time the cadence of the prayers in a rhythm that matches my heartbeat, and I know that somewhere between repetitions six and seven the treatment will be over. At all times I know how much longer I will be on the table.

I was told I wouldn’t feel anything during treatment. Now and then I think I do. Sometimes it is a slight pressure in the treatment area. Sometimes a feeling of warmth. It doesn’t happen until near the end of delivery, is never exactly repeated on subsequent days, and very mild. It’s probably just in my mind. A novelist has to depend on her imagination, doesn’t she?

What could possibly go wrong with that little man waving his rattle and dancing behind me?

Next week: Chemotherapy

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