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I remember, over five years ago, the first day the front part of my feet went numb, but I do not remember what they felt like before my chemotherapy treatments. Despite the continued neuropathy, I totally believe that one day the feeling in my feet will return. Whether it returns overnight or gradually, that remains to be seen, but I am confident it will return. How? I have no idea.

 Part of my hope is with the hundreds and thousands of neuropathy suffers that have experienced the same side effects from chemotherapy. I still believe the best and most up-to-date information comes from those actually living with neuropathy and those willing to share information with others without financial compensation (like the chiropractor I mentioned in an earlier blog). So please share what you know. It could help others move forward.

Questions I would have asked my oncologist, if I had known them, about neuropathy as a side effect of chemotherapy: What are my chances of experiencing neuropathy as a side effect from the chemicals used for my treatment? Does it hurt to have neuropathy? If I get neuropathy, how long will it last? Is there a cure? If not, will I ever return to normal, or will I have it the rest of my life?

For the last three weeks, my father-in-law, Carl, has had a difficult time with the side effects of chemotherapy and radiation. The fatigue was devastating, to the point that he could barely eat and getting out of bed was actually a chore. His lungs were filled with fluid and his coughing was excessive to the point that it added to his fatigue.  But he has rebounded with medication from his pulmonary physician and fluids from his oncologists. The fact that this man keeps bouncing back displays and incredible will to live.

Though he is feeling good, at this time we are waiting for the PET scan that will happen around April.  The unknowns from waiting for answers after chemotherapy and radiation can be overwhelming. But Carl is handling it well and looking forward to the test.

 I know many of you have kept him in your prayers, and Debbie and I greatly appreciate it. The PET scan will be the deciding factor as to whether Carl continues to fight esophageal cancer.

 I will post the results of the test when it happens. Thank you for your kind, positive, and loving thoughts.

(Continued from March 1)

Jeff may lose his life to cancer, but just by sharing his story he has touched a lot of us who are cancer survivors and still suffering side effects of chemotherapy. For me, I will remember this little boy’s battle with cancer and use it for the pick-me-up when I begin to have a pity party.

 If you’ve read my book, “Cancer Sucks – A True Story,” you will know how I feel about “never, ever, quit” and “never, ever, give up. The following is a paragraph from the book.

 “Life is amazingly precious, and I’ve always thought of myself as strong and unrelenting and a sound representative of humanity who would never adopt a quitting attitude. But I readily admit that at times when the reality of sickness became overwhelming I, too, (though briefly) entertained thoughts of “giving up” or “checking out.” But somehow I was able to banish that alternative to the darkest caverns of my mind. I love life. The beauty in the world around us is oftentimes breathtaking, and giving in, to me, would be much the same as committing suicide―I refused to go there.

 “I do not, and will not, judge or second guess anyone’s right or decision to abandon ship in the often stormy waters of an ill-fated voyage with cancer, as it is a God-given choice. But I am an individual spirit and must always answer to my inner soul.”

 So, do I think Jeff is wrong for making his decision to stop his treatments? No. I respect his decision. And I’m thankful for hearing his story. I know his decision will always be only a thought away.

 Perhaps Jeff has more courage in his little finger than I have in my whole body, because I still have this need to cling to every last breath and fight until there is absolutely nothing left. However, I thoroughly believe the decision he made was a co-decision with a higher power. When I reach that time in my life, perhaps I will feel the same, but until that happens, I will encourage everyone I meet to “never, ever, quit. Never, ever, give up.”

 God bless you, Jeff.

I’ve been a little preoccupied over the past week with challenges I believed to be important. Yet they are absolutely meaningless when compared to dealing with cancer and side effects of chemotherapy. I apologize for missing a few blogs, but sometimes we get so caught up in trying to deal with our own problems that we need to hear a story about courage. This story is a good one, but it will not have a happy ending. However, it is one that helps me appreciate life even more.

A 12-year old boy (I’ll call him Jeff) who has battled a rare form of cancer since he was 7 recently made a bold decision. He is stopping his treatments so he can go home and be with his family. This young boy is aware of what his decision means. So is his hometown in Tennessee, which has rallied around the boy who is facing such a stark decision with such maturity and good humor.

“I had the opportunity to meet him this summer,” said the principal of Jeff’s middle school. “He is a very courageous young man to have a very mature adult outlook on life. It’s amazing as a 12-year old he is really able to face the opportunities and challenges that he has in his remaining time.”

“He’s just a wonderful little boy,” Jeff’s grandmother said. “He’s always happy. No matter what he’s always happy and he doesn’t like to talk about his cancer. It makes him sad and he wants to be happy.”

Jeff’s school and neighbors have been touched by the boy and are trying to make his last days cheerful, raising money for his hospice care and taking care of his bucket list. Jeff has two wishes, to tour the Coca Cola factory in Atlanta, Ga., and go to the indoor water park at the Wilderness Resort in Tennessee.

Jeff is seeing one of his wishes come true very soon. He will be visiting the Coca Cola factory in a limo, the ride donated by a businessman.

“Everybody has been so wonderful,” Jeff’s grandmother said. Jeff’s childhood has been wracked with pain and filled with surgeries and harsh medicine. When he was 7 he went to the doctor for his back aches. “We didn’t know what was wrong with him,” his grandmother said.

His family took him to Monroe Carell Jr. Children’s Hospital at Vanderbilt University Medical Center where the doctors diagnosed him with rhabdomyosarcoma, a rare form of cancer. This type of cancer is made up of cells that normally develop into skeletal muscles and is more common in children than adults, according to the American Cancer Society.

“The tumor on his spine was growing so fast, it paralyzed him. He was losing the ability to walk,” his doctor said. Jeff had surgery on his spine, a bar and two “cages” – cylinder devices in the spine to replace discs – were put into his back. He had to learn how to walk again after the surgery and received radiation as well as chemotherapy. The treatments worked, but only for two years.

When Jeff was in the sixth grade, “He went for all of his scans and tests and they said everything was gone,” his grandmother said. “Then two or three months later it came back and it hit him pretty hard.” Once the cancer came back Jeff again resumed chemotherapy and radiation. Jeff now has tumors in his legs, arms, shoulders, near his heart, in his lungs, and there may be more.

The doctors have tried everything, but the tumors kept coming back. The only choice left is experimental treatments in Texas, but Jeff does not want to leave home. So he made his decision. “He’s been going through a lot since he was 7,” his grandmother said. “Now he’s on a lot of pain medication and hospice is coming in. We don’t know what kind of time frame we’re in.”

To be continued…

I’ve been a little preoccupied over the past week with challenges I believed to be important. Yet they are absolutely meaningless when compared to dealing with cancer and side effects of chemotherapy. I apologize for missing a few blogs, but sometimes we get so caught up in trying to deal with our own problems that we need to hear a story about courage. This story is a good one, but it will not have a happy ending. However, it is one that helps me appreciate life even more.

A 12-year old boy (I’ll call him Jeff) who has battled a rare form of cancer since he was 7 recently made a bold decision. He is stopping his treatments so he can go home and be with his family. This young boy is aware of what his decision means. So is his hometown in Tennessee, which has rallied around the boy who is facing such a stark decision with such maturity and good humor.

“I had the opportunity to meet him this summer,” said the principal of Jeff’s middle school. “He is a very courageous young man to have a very mature adult outlook on life. It’s amazing as a 12-year old he is really able to face the opportunities and challenges that he has in his remaining time.”

“He’s just a wonderful little boy,” Jeff’s grandmother said. “He’s always happy. No matter what he’s always happy and he doesn’t like to talk about his cancer. It makes him sad and he wants to be happy.”

Jeff’s school and neighbors have been touched by the boy and are trying to make his last days cheerful, raising money for his hospice care and taking care of his bucket list. Jeff has two wishes, to tour the Coca Cola factory in Atlanta, Ga., and go to the indoor water park at the Wilderness Resort in Tennessee.

Jeff is seeing one of his wishes come true very soon. He will be visiting the Coca Cola factory in a limo, the ride donated by a businessman.

“Everybody has been so wonderful,” Jeff’s grandmother said. Jeff’s childhood has been wracked with pain and filled with surgeries and harsh medicine. When he was 7 he went to the doctor for his back aches. “We didn’t know what was wrong with him,” his grandmother said.

His family took him to Monroe Carell Jr. Children’s Hospital at Vanderbilt University Medical Center where the doctors diagnosed him with rhabdomyosarcoma, a rare form of cancer. This type of cancer is made up of cells that normally develop into skeletal muscles and is more common in children than adults, according to the American Cancer Society.

“The tumor on his spine was growing so fast, it paralyzed him. He was losing the ability to walk,” his doctor said. Jeff had surgery on his spine, a bar and two “cages” – cylinder devices in the spine to replace discs – were put into his back. He had to learn how to walk again after the surgery and received radiation as well as chemotherapy. The treatments worked, but only for two years.

When Jeff was in the sixth grade, “He went for all of his scans and tests and they said everything was gone,” his grandmother said. “Then two or three months later it came back and it hit him pretty hard.” Once the cancer came back Jeff again resumed chemotherapy and radiation. Jeff now has tumors in his legs, arms, shoulders, near his heart, in his lungs, and there may be more.

The doctors have tried everything, but the tumors kept coming back. The only choice left is experimental treatments in Texas, but Jeff does not want to leave home. So he made his decision. “He’s been going through a lot since he was 7,” his grandmother said. “Now he’s on a lot of pain medication and hospice is coming in. We don’t know what kind of time frame we’re in.”

To be continued…

It’s seems a coincidence that I am writing about neuropathy and yesterday found a seminar about “new technology that offers hope for peripheral neuropathy sufferers” right in my hometown of Ventura, California. Of course, anytime I hear of something new I want to know more. So, I answered an ad in the paper that offers a “free lunch” followed by a seminar about “painless, drug free, FDA-cleared treatment which may be able to reduce, and possibly eliminate numbness, cramping, piercing/tingling feeling, aching, etc.”

 A phone call to the number advertised in our local newspaper got me an answering machine, and then a return call on Monday afternoon. The following is my conversation with a woman representation.

 After identifying who I was, the woman said, “I’d like to ask you a few questions to make sure you are qualified for the seminar.”

I guess I should have been skeptical at this point, or perhaps my skepticism should have begun with the answering machine. “Sure,” I said.

 She asked me to describe my neuropathy, what I thought was the cause, and if I was currently seeing a physician for my symptoms. I replied with, “The front half of my feet and toes are numb, tingly, and sometimes there are cramps, and I occasionally experience a burning pain. My neuropathy was caused by chemotherapy. And I am not seeing a physician concerning my symptoms. I have seen physicians, oncologists and podiatrists, but there appears to be no cure.”

 She said I appeared to be right for the seminar, and then she asked, “On a scale of 1 to 10, how would you describe your enthusiasm for getting rid of your neuropathy?”

 I told her that over the past five and one half years I had learned to cope with the numbness and relearned how to balance and walk. I also told her that I would love to be free from the numbness and tingling sensation.

 “I understand,” she replied, “but on a scale of 1 to 10, where would you put yourself?”

 The 1 to 10 sounded a lot like the smiley-face pain chart when I was in the hospital for colon cancer surgery. I replied, “If I had to put a number on it, I would probably say a 5.”

 She put me on hold for a few minutes and then returned and said, “I’ve conferred with the Dr. He doesn’t think you are right for the seminar. I’m sorry, but if your enthusiasm improves, please give us a call.”

 Debby was listening. Her eyes widened and her jaw dropped. She and I were both dumbfounded. I had just been refused to attend a public seminar, in which an attendee had to have a confirmation code to enter. Does anyone besides me see something wrong with this? Look up peripheral neuropathy and see for yourselves how many physicians and chiropractors claim that they have new technology that will change all of our lives. Is it all about money? Absolutely.

 Remember, if it appears to be too good to be true, it usually is. But I will never quit trying to find something that will help me return to what I remember is normal. I will never, ever, quit.

After my last post, I was reminded by more than one reader that a large number of patients experiencing neuropathy live with constant pain. I know this is true of neuropathy associated with many illnesses, and I even know one woman whose treatments were with the same chemicals as I had for colon cancer and experiences pain throughout both feet. Perhaps I am one of the luckier ones who are nagged only by the numbness in my toes and the front part of each foot. Regardless, neuropathy is not a pleasant side effect.

 After neuropathy appeared as a side effect to oxaliplatin and/or 5-FU, I literally had to retrain myself to balance and walk. Rising from a bed or chair, I immediately felt as though I was falling, and many times I did. So, faced with the possibility of falling and breaking bones, other than my toes, I trained myself to stand with my feet spread with the majority of my weight on my heels, which I could feel, while steadying myself with the arms of the chair. Once I mastered this technique, there were always balance issues while walking. But within a month I again mastered this process, much of the time holding onto Debbie’s steadying arm. Today, as I still experience neuropathy, I doubt if anyone knows that I am compensating for the lack of feeling in my feet. You do learn to adapt and overcome.

Learning how to walk again can be frustrating, but I’m certainly not the first or only one. It is definitely a small price to pay for becoming a cancer survivor. Has my life returned to what was normal for me before colon surgery and chemotherapy? No. But I now have a new definition of normal. And I’m probably in as good a shape as anytime in the last ten years. And my love for life has taken on a new meaning.

 So what happens if the feeling in my feet returns? Will I have to readjust how I walk again? Is it something that will always nag me? Perhaps. Though I don’t know the answers to these questions, I know it really doesn’t matter. My love for Debbie and life pushes me beyond the need to learn how to walk again. My only regret is that Dr. Rosen did not tell me of the possibilities of these unknowns in my life.

 Please, no matter how your life changes because of cancer and/or chemotherapy, do not quit. Never, ever, give up.