Chemotherapy……continuing the conversation

A warm welcome to our community of caregivers,

I want to continue the conversation regarding supporting those we care about who will be undergoing chemotherapy. This support is critical emotionally, nutritionally and physically. As I shared in my last post, I was extremely fearful of Larry starting chemotherapy. I had heard only horrible stories from those who had undergone treatment; severe nausea; incredible fatigue; skin disorders; hearing loss; and so much more. I was so scared for the man that I love, however, I had to remain strong and positive.  Knowing that each person who begins chemotherapy will have a different reaction, I can only talk about our experience and hope that the positive effects that Larry had will be the outcome for many.

Together we prepared, emotionally knowing that starting treatment was critical in that his Mantle Cell Lymphoma was progressing to the point that the “Wait and See” period had ended. Alternative treatments (acupuncture and Chinese herbs) were no longer effective as his MCL had become more aggressive, tumors growing throughout his body. The time had come to begin the protocol  that our bone marrow doctor at Stanford had designed and instructed our oncologist at Kaiser to use. My fear rose to a new level when I learned that our oncologists had never used this protocol before and our Stanford doctor was thousands of miles away!! I knew that I had to trust in our doctors and the amazing nurses that we had who administered and instructed us each step of the way.

With the scheduling of the first round of chemotherapy, my next step was to learn as much as I could about the process which included the nutrition that was necessary to build his body to help with the healing.  A dear friend of ours gave us a copy of the book entitled, “The Cancer-Fighting Kitchen” written by Rebecca Katz with Mat Edelson, which I highly recommend. Not only was this book an excellent resource that explained the importance of preparing foods that would be nourishing and have big flavors for the patients undergoing chemo whose taste buds are compromised, but it served as a support to explain the many side effects that Larry may experience.

Each weekend, I prepared soups that could be ready for his lunch each day through the week, easy to reheat and filled with great nutrition.  For days after his chemo treatments he would feel exhausted and have a hard time getting off the sofa to even think about eating. Ensuring that there were ready to go meals that would be comforting to enjoy worked well. I would be sure to stock the refrigerator with snacks and drinks that would keep him nourished until I returned from work each day.

We had also read of the importance of exercise following chemo treatments. Exercise helps to build the immune system and assisted in his body recovering more quickly from each round of chemo.  Because of the concern with the amount of tumors that were in his stomach and intestines, he was in the hospital for the first two rounds of chemo. The day after he returned home each time, he and I kept up our routine of our daily walks, completing 2-3 miles.  His body responded extremely well to the chemo with his visible tumors disappearing and his body gaining weight for the first time in years.

I would encourage each of you who will be caring for a person undergoing chemotherapy, continue to research recipes, learn more about the side effects in order to be informed and proactive, gain your strength as a “cheerleader” and adopt the mantra, “The good news is”, so that each baby step in the healing process becomes a celebration.

Until next time…..be strong and positive!

Warmly,

Bobbie

Coping with Fear…Caregivers as Cheerleaders

Aloha friends,

Larry’s recent post shares his experience with his first round of chemotherapy in a very creative way.  Through an email to our family and friends, written as the “event” of receiving the drugs was going on, he creatively and I might say, lightheartedly told his story.  He was ready to begin the chemo treatments, however,  I was terrified!!

For those of you who know me and those who I hope to know through this blog, I have always approached difficult situations by facing the challenge and finding a positive solution as quickly as I can. In this way I feel in control and can move forward pro-actively to turn a negative situation to a positive.  My favorite saying is, “The good news is”, which helps me to cope with even the most dark moments.

I must admit that I was having difficulty finding the good news, I wanted to protect him from the trauma of chemo. My negative mindset was based on testimonials from acquaintances and friends who had experienced treatments, as well as, many articles that I had read.  The reality of great nausea, listlessness, good cells being killed off, a weakened immune system, loss of hair…all of that was palpable, but the reality that the drugs he would be given could kill him caused me to dread the onset of treatments. I knew that our decision to use Chinese Medicine and acupuncture as effective alternative methods of treatment was a great one, but with the cancer becoming more aggressive after 4 years, chemotherapy was the only alternative.

A great challenge for me as a Caregiver, I could not let him know of my intense fear, my next step was to don the hat of cheerleader. As he entered the hospital for his first round of treatment, I was at his side to provide support and confidence that all would be fine.  Together we visualized the tumors disappearing as the drugs did their work.  I was able to listen to his concerns and respond with statements that provided him comfort and “good news” so that we both looked forward very positively. As the days passed, it became clear that chemotherapy was not the dreaded poison that I feared, rather, we could visibly see the positive effects right away.

As I continued to research, I learned the importance of an organic diet and consistent exercise to assist in the healing of his body.  We will talk about what I did and what worked best for Larry in my next post.

Please take care of each other,

Bobbie

 

 

Researcher and advocate; what do you have to lose?

Aloha fellow Caregivers,

I apologize for my absence from posting these past few months.  As we Caregivers know, it is a strategic balancing act to continue to support our loved ones through the daily routines so critical for healing, while continuing to meet the demand of our own careers and lives.

As an educator, these past few months (February to May) have been extremely busy for me, which has consumed my time from blogging.  I coordinate teacher education programs at Leeward Community College on the island of Oahu, Hawaii. With preparing for a national accreditation visit, teaching multiple classes and attending to administrative duties, I have found little time to attend to what is very important to me….. creating a support system for fellow Caregivers.

As a teacher for over 30 years at the elementary school level, as well as at the College level, I have found that I wear similar hats in my career as I wear as a Caregiver; I am a teacher; cheerleader; advocate; researcher and nurturer, always with positive thoughts and a “Can Do” attitude as I work to make a difference in this world.  My mantra of, “The good news is” permeates my everyday life and provides strength for me as I face obstacles and challenges.

As a Caregiver and advocate for my husband, I refused to accept the words, “there is no treatment” when we were initially given the news of his diagnosis. As I shared in my last post, I spent hours wearing my “researcher hat” and was driven to find a positive outcome which would lead us to a clinical trial.  I remained confident that my dream of finding a solution would come true….one Saturday morning in 2013, my dream came true!!!

I found a clinical trial at Stanford University Medical Center specifically for Mantle Cell Lymphoma. After reading the summary of the trial and the qualifications for being accepted,  I knew that Larry was a perfect candidate.  I immediately sent an email to the clinical trial coordinator, writing from my heart to describe my husband.  Mid afternoon I received an email back from Stanford telling me that Larry met the criteria for admission to the trial with more detailed information as to the next steps to follow.

I know that the thought of your loved one entering a clinical trial can be frightening, however, our belief was what did we have to lose? We believed that a clinical trial would provide the latest treatment protocols and the most up to date research for his disease.  Not only will the vaccine trial and bone marrow transplant provide healing for Larry’s disease, but also provide hope for generations to come.

I encourage you to share your reflections and stories as we continue our conversation as Caregivers and advocates for a fulfilled life.  I look forward to hearing from you on Caregiver’s Corner!

Aloha,

Bobbie

 

 

 

 

 

As I shared in my last post, I wear many hats, my priority is Caregiver, however, in my career as an educator, I find myself wearing the same hats, caregiver, advocate, researcher and cheerleader.

The Many Hats We Wear As A Caregiver

As I shared in my opening message, we as Caregivers play many roles and wear “many hats”….each one as critical as the next.  Each week in my “Caregivers Corner” blog, I will put on another hat and talk about my story.  Though my experience is centered around the diagnosis of cancer, the hats we wear and roles we play unite us regardless of the illness. The same strategies will work for all of us who are providing support for those we love.

This week I am wearing my first hat,  ”Researcher”.  My mission was to learn as much information about Mantle Cell Lymphoma as possible.  We must be brave as researchers because often the details of the disease and the articles that we read can be so frightening that we don’t want to continue. I began typing “Mantle Cell Lymphoma”, Lymphoma, non-Hodgkins Lymphoma, and cancer into the search engine and read every article that I could find. Yes, there was repetition, but that was fine, as I tried to digest the information with a feeling of an empty pit in my stomach. As I read the articles I learned that the prognosis for Mantle Cell was bleak for life expectancy, but I vowed that I would keep searching with optimism in order to find any new treatments that were having positive results. My search engine must have been exhausted over the course of months and several years as I looked for cancer treatment centers; the latest on doctors who were treating this specific disease; alternative methods to avoid chemotherapy; nutritional recommendations…”Cancer fighting foods” and so much more. Every time that I found something positive, such as the article that spoke of the advantages of drinking red wine in fighting cancer…being that Larry and I enjoy red wine…that was perfect!!!

The greatest discovery was prompted by an article that I read in the AARP magazine that was beautifully written by a cancer survivor who had participated in several clinical trials for the various cancers that she was fighting.  Her words were so inspirational and proactive that my search took a turn.  My research led me to the clinical trial for Mantle Cell Lymphoma at Stanford University Cancer Center. This discovery has changed our life!!!!  More of my story next week.

Please feel free to comment and/ or share your story so that as a community of caregivers we can gain strength from one another.

Have a beautiful week,

Bobbie

Caregiver: Advocate, researcher, cheerleader, counselor and more

Welcome fellow Caregivers,

When I heard the following words, my heart sank and life stood still…….”Mr. Martel, you have been dealt an unlucky hand, you have Mantle Cell Lymphoma, a cancer with no effective treatment, no cure and the life expectancy at your stage IV is a maximum of 4 years”.

From the moment you hear the words that your loved one, friend, parent, or sibling has cancer, your life will never be the same. If you are like me, your  emotions became a whirlpool spinning out of control beginning with  horrible fear, deep sadness, terrible anger and eventually acceptance followed by the strength for advocacy. In the days and months following my husband’s diagnosis with Mantle Cell Lymphoma, I became obsessed with seeking web-sites that provided the latest research related to treatments for a disease that we were told had none. I sought out web-sites and blogs specifically for Mantle Cell Lymphoma where I could read comments and stories from cancer patients and their loved ones, hoping to gain a glimpse of what to expect as the disease progressed, always with a positive outlook that I would find some words of hope.  As a researcher and advocate, I took on this role alone. I wanted my husband  to remain as positive and focused on healing as possible.

Once you get to know me, you become aware that my favorite saying is, “The good news is” , which has been a strategy that has helped me through the most difficult situations….this statement would take on a more powerful meaning as the days and months proceeded.

I invite you to join me as we become a community of supporters (caregivers) for those people that we care about.

My mission for this blog site is to provide an online forum for discussion, questions, sharing of stories, and resources.  I want you to know that you are not alone, together we can become a support system for those who are diagnosed with cancer or any potentially life threatening illness and one another.

Together, we are better!!

Warmly,

Bobbie