New Lily

After a Diagnosis of Cancer, We are Left Feeling… Hopeful

James and me after the birth of our 9th child, Sam.

Quote of the Week: Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.

On February 29th my husband, James, was diagnosed with Stage 4 cancer of his throat. I suppose there was some point in my life when I wondered what it would be like to hear the words from a doctor that someone I loved had cancer. But, I never thought it would be my husband, 48 years old and healthy, the father of 9.

James had been bothered by a chronic sore throat. He had been to the Minute Clinic where a physicians assistant, Leeanna Harding, had noticed something wasn’t right, to our friend Howard Guthmann, his personal physician and then to the throat specialist, Dr. Bobby Silver. When he came home from what was supposed to be a routine visit with Dr. Silver, he quietly sat me down and told me he had cancer. His words were a blur. I heard him say that he had a tumor in his throat … Dr. Silver was certain it was malignant …99.9% certain … biopsies would be back in two days … CT Scan and PET Scan were scheduled –  the tumor had metastisized to at least several lymph nodes in his neck. Stage IV cancer. High cure rate  with this kind of cancer. I felt strangely like I was trying to catch up with his words. I certainly felt pain, deep emotion and fear. But I had always thought, that if confronted with cancer in a loved one that I would be overwhelmed by this.  Instead I felt as if  I was in a dream where there was some sort of a race going on… a race of a lifetime …and I was already terribly, dangerously far behind. Instead of being paralyzed by emotions I had feared, I  felt a silent desperation, and an urgency to somehow catch up with the rest…

It is funny how our emotions can sometimes seem apart from us…like they have a life of their own. That feeling of trying to furiously catch-up has not totally left me over the last 3 months of my husbands diagnosis and treatment.  While it is still present in a sort of remote way, I am finally sensing that I am gaining on it a little. Until recently, I really couldn’t explain it.  At times,  in fact, it left me very unsettled. However, if I have had one thing during the last seven weeks while accompanying my husband to his weekly chemotherapy treatments and his daily radiation treatments…it is time to reflect. Today we enter the homestretch. James had his final chemotherapy treatment yesterday and we have one week to go with the radiation treatments. 7 days from now (God willing), James will move from treatment to recovery and I will have moved to a firmer understanding  of my odd sense of feeling way behind…and frantic.

Most of us are living our lives at least somewhat reactively. We react to the things going on around us…to what happens in our schedules, in the lives of our children, and even to how we feel day-to-day. We wake up tired and we react by acting cranky or drinking coffee. Our car’s battery dies, and we react by purchasing a new one…or cursing. Even the small things like paying bills, exercising and planning meals cause us to react in a certain way. Over time, we might become rote in these reactions and we can feel like we are going through the motions of our life. I have always considered myself to be a spiritual person, but I know that even in that realm, I can become reactive.

I guess sometimes we just roll along until something makes us stop. My husband’s cancer diagnosis put a stop to the everyday reactions to life. I immediately realized that this time things would be different. Even with all the advances in the world of medicine, there are diseases like cancer that still carry a powerful reputation. Cancer has earned that reputation. It is scary – especially when it is tagged with the dreaded words “stage four”. Although the doctors told us that this type of cancer had a high cure rate, the power of the word cancer created in me a feeling of smallness…of powerlessness. It was as if cancer was the opponent, and I felt inferior, ill-prepared, and frankly unable to help my husband in any real way to go up against this giant of a competitor. While I was filled with emotion for this man I loved so much…I felt helpless. This helplessness expressed itself in a feeling of being far behind my competition…a competition I knew so very little about.

My husband is a thinker. This is not to say at all that he is not a doer. But first, he is a thinker. And while I was busy feeling like I was dead last in a race…seeking to find something in my competitive toolbox to move forward-like a runner trying to maneuver ahead, my husband’s brain began to work overtime. He researched, and read, and read some more. He read about cancer; he read about chemotherapy; he read about radiation; he read about alternatives; and he read about survivors. The treatment for throat cancer is one of the worst of all cancer treatments. No one likes chemotherapy. Radiation causes everyone challenges. When you shoot that radiation over 7 and half weeks into the mouth and throat, severe, often life-altering problems can develop. To be aggressive in his approach, James even read clinical trial research regarding new medical strategies for dealing with some of the worst effects of head and neck cancer treatments. One of these trials involved a drug for treating Oral Mucositis (the most troublesome reality for head and neck cancer patients) newly approved by the FDA. James mentioned this drug to his physicians (who were not aware of it), received a prescription (fought with the insurance company for coverage – denied, approved and finally denied again) and finally began using it a week into treatment. This drug, Mugard, appears to have been a tremendous help for James as he has fewer mouth sores, blistering and other symptoms related to his chemotherapy and throat and mouth radiation than most throat cancer patients).

While at times the information, especially on the internet, was almost overwhelming, gaining knowledge gave my husband a sense of purpose and determination. I am not claiming that he did not have dark moments. Especially before treatment began he had those times when worry about the future (a wife and 9 kids will do that to you) would cause him great anxiety. But those feelings were short-lived. As he gained more information and knowledge, he seemed to gain resolve as well. Once treatment began, he seemed to be over any darkness. He and the doctors had decided on a plan. He worked the plan daily and diligently.  He always tells our kids that “most of life is just showing up.” He showed up – every day.

I know James is not alone in feeling this sense of determination. He has been tremendously moved and motivated by other cancer patients he has met along the way. There is definately a “pull-up-your shirt sleeves and get moving” kind of attitude in many of the cancer treatment waiting rooms we have visited. Everyday that we sat waiting for radiation for instance, I saw resolve in the faces of other cancer patients. When I first followed James into the chemotherapy infusion room, I saw it as well. Oddly, it was Dr. Seuss that came to my mind on that first day of chemo. If cancer is personified, then the infusion room is like Christmas morning and cancer is the Grinch himself…waiting and creeping closer, hoping to catch some weeping and wringing of hands. Instead, the Grinch is surprised, like I was frankly, to find a room full of people smiling and having normal conversations with their companions, and with the kind, knowledgeable and thoughtful nurses giving the treatments. Just as the Grinch couldn’t steal Christmas, he hasn’t been able to steal hope from cancer patients either. What a disappointment the Cancer Grinch must feel having to face this, dare I say, cheerfulness.. . this hope …which I know greets him at every cancer treatment center.

I said earlier that James is a thinker.  However, he is also a man of action.  After gathering information, James is usually swift in his decisions and the actions that ensue.  It was no different after he discovered he had cancer.  One of his first “actions” was an expensive one…a $600.00 vitamix blender, which I wrote about at 9 Kid Fitness. Something James had read about while researching, the vitamix (or any good blender) is a great way to add more greens (especially the kind we usually don’t want to actually eat) to our diet. We knew it would be a good investment.   Its funny to think that before James was diagnosed we talked about buying a good blender, but we could never bite the bullet. After the diagnosis, we thought nothing about the cost. I started making green smoothies immediately. New words became a part of our vocabulary… chlorella, spirulina, wheat grass… and we added greens as well…celery, collards, kale and spinach.  I am not going to lie and say we liked these smoothies…actually not at all.  We had read  that it is an acquired taste (yet to be acquired for me however).  We began making all sorts of other types of smoothies…adding whatever fresh or frozen fruit we had around.

Unfortunately for James, he could only drink these smoothies for the first few weeks of treatment.  First of all, they began to taste awful after radiation had burned off his taste buds and chemotherapy added a rancid metallic taste to everything.  Secondly, the radiation began to severely burn the back of his mouth and throat and made it difficult and painful to swallow very cold things (or very hot things).  I am hoping he will get back to drinking smoothies soon, but in the meantime, the rest of the family has found a new passion…trying to better the last person’s smoothie in taste.

Supplements, another result of his research, have become part of an everyday ritual for James.  At this point, over 7 weeks into treatment, many head and neck cancer patients can’t swallow any food at all. Every day, he braces himself and physically swallows between 40 and 50 supplements designed to boost his immune system, fight cancer cell multiplication, save his remaining salivary glands and help him fight off the negative effects of radiation and chemotherapy: Curcumin, Curcetin, CQ10, Gingko, Selenium, and Magnesium to name just a few. Although somewhat of a skeptic by nature, James has even tried acupuncture as a treatment to help save his salivary glands which have been badly burned by radiation treatments.  His careful research seems to have paid off, as he is doing very well relative to some predictions. Regardless of whether this is due to the newly approved drugs, nutritional supplements, or the acupuncture, it is clear that being an advocate for himself as a patient has helped in his response to the treatment. It has also taught me things of value for 9 Kid Fitness and for approaching life in general.

Cancer is powerful.  But so is hope.   As the treatments have continued I sometimes still feel like I am trying to desperately catch up, but I have realized that the kind of hope that depends first on faith…is not the desperate kind.  I understand that there is a difference between having faith that things will turn out alright, and having faith that no matter how they turn out…we will be alright.  It seems to me that the four hardest words in the English language are from the Lord’s Prayer: “Thy will be done”.  Not only do I have hope in the prognosis for James, I have found great hope in the human spirit.  The support we have felt in the form of prayers, meals, house cleanings, and care for our other children has been amazingly palpable. A good friend of James’ came twice to his chemo treatments to visit and offer some distraction. All the support has truly inspired and humbled us.

The many doctors and nurses who have played a role in James’ care have also heightened my respect for those in the medical profession. They have always been honest with us (sometimes brutally so), but they have also always provided us with a powerful sense of hope.  I am sure that we are not unique in feeling this way, and many might say that they are just doing their job.  Yet the often long conversations that we have had with some of the doctors went above and beyond their job description, and spoke to who they are as human beings. They have been constantly available to us. The image of a distant, non-communicative physician spending as little time as possible with their patients hasn’t been our reality. They have given us as much time as we have needed. They phone, e-mail and text to see how things are going. We are sincerely grateful.

I hadn’t planned on writing about my husband’s experience with cancer until recently.  James is a very private person. Fighting disease, no matter what kind, is a personal thing, and I wanted to respect my husband’s privacy.  However, after talking it over with James, I felt that it was appropriate to share parts of his experience with my 9 Kid Fitness readers for many reasons.  While these last few months have been far from easy, James and I have both learned a tremendous amount , not only about cancer, but about nutrition, prevention and a lot more.   Part of why we learned so much is because people had the generosity and openness to share information with us. When I began 9 Kid Fitness I wanted to be part of a wider community of knowledge about exercise, health, wellness, and family life.  Frankly, not writing about this experience felt wrong to me… as if I was acting one way in my real life, and another for my website.  I want 9 Kid Fitness at its core to be an authentic place to share our stories of fitness, health, faith and family, and so it seems appropriate to share with you our experience.  I hope that it can begin a conversation and that others may feel comfortable sharing their life-changing experiences and challenges as well.

Please keep my family in your thoughts and prayers as we enter this last difficult week of treatment and what will be a long period of recovery. Thank you so much.

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