July 14th, 2013

If the name Dr. Frederick Goldberg rings a bell, it’s because he is the one who wrote the forward for my book, “Cancer Sucks – A True Story.” Doctor Goldberg is the Senior Medicinal Chemist and oncology researcher for AstraZeneca in Manchester, United Kingdom.

I just learned that Dr. Goldberg has recently received an award in Moscow for being chosen the top oncology researcher (for those researchers 35 years of age and under) in all of Europe. And not only is Dr. Goldberg one of the top researchers, but he is a very kind and caring person. It is a pleasure not only knowing him, but to occasionally travel with him and his wife.

Please join me in congratulating Dr. Goldberg on his accomplishments and encourage him to continue his aggressive and relentless search for a cure for cancer.

Thank you Dr. Frederick Goldberg.

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July 1, 2013

Thanks to everyone for your likes and comments on the last blog. Cancer is not going away, so we need to talk and share information. Thanks.

Debbie and I went to Green Bay in May, 2012 for a week and again in July, 2012 for another week to be with Carl and help Debbie’s mother with Carl’s care. At this time he could still function, although he was eating less, losing weight, and very unsteady on his feet. His falls became more frequent no matter who was with him. It was soon all he could do to get out of bed.

Debbie returned to Green Bay again in late August and stayed with her father until his death on September 24th, 2012. Needless to say it was very difficult for her and her mother. At this time, Hospice was involved and visiting him weekly for an update on his vitals and his condition. It was highly stressed by the Hospice nurse to have him enter a twelve-bed facility where he could get around-the-clock nursing care.

Carl entered the Hospice facility after the first week in September. He stayed for a few days and then pleaded with Debbie and her mother to let him come home. Without hesitation, his loved ones decided they would handle the nursing chores and let him return. It was a decision made out of love and one that was going to be demanding.

Debbie and her mother’s care for Carl was non-stop, 24/7, and they were exhausted beyond human belief for several weeks. Debbie was with her dad when he took his last breath, just as I was with my mother as she took her last breath in 1980 when she died of cancer. It was difficult for Debbie and it took several months for her to attain the realization that her father was gone. And after more than fifty years of marriage, it had to have an adverse effect on her mother. I don’t think any of us has a clue as to how it feels to lose a spouse until it actually happens.

As I watched my father-in-law’s health deteriorate, many questions raced through my mind: Did Debbie and her mother make the right choice, although the choice was made out of love for Carl? Why did Carl decide to end treatment knowing the end result was an unpleasant death (Perhaps he was never told by his oncologist as to how difficult his death could be on him and others)? And at the end, why did Cart want to hold on to the last second of life (Perhaps we all have that inner desire to hold onto every breath we can before we let go)? Should we, as cancer sufferers and knowing we are terminal, accept the end, submit to continual hospice care and spare our loved ones the heartache and pain of watching us die? Or are we justified in putting the load of care on our family? Though I certainly don’t have all of the answers or even know which one is right, if there is a right one, I do know I am thankful I was with my mother when she died.

These are questions to which we rarely see an answer. Please comment. What you say might just help another family in their time of decision to make the right choice for them.

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June 25th, 2013

I have been in self-induced writing exile for well over a year. I don’t know if I am one-hundred percent back or if I am going to have to take baby steps, but at least I have reached a new beginning. I may not have written in over a year, but I have continued to follow what is happening with cancer and the organizations I support.

Thanks to all of you who have advised me with tips on how to resume writing. All of the information helped, but I’ve learned that when you fall into a writing hole you have to dig your way out one shovel full at a time. And depending on the circumstances, I now know it can take awhile. Regardless, I do believe I owe everyone an explanation.

Some of you will remember my father-in-law, Carl, and that he was diagnosed with esophageal cancer in October, 2011. Debbie and I spent the last part of December 2011 and all of January 2012 in Green Bay, Wisconsin, taking him to chemotherapy and radiation treatments and doing whatever we could to help. He went through the treatments with few complications and the prognosis looked good. Debbie and I returned to California and played the waiting game with the entire family. There was a 60 day layoff until he could have another PET scan to determine whether he was cancer free. The test results were not good.

The treatments had shrunk the tumor, but it was still there. I had talked to Carl extensively while taking him to his chemo and radiation treatments and he was adamant that, if the treatments did not eradicate the cancer, he did not want to submit to further treatment. In other words, he wanted to die. He was given three options by his oncologist: (1) agree to an operation with a very low percentage of survival, if he could find a surgeon to perform the operation because of his difficulty with COPD, emphysema, and an irregular heartbeat, and he would most likely die on the operating table (2) undergo another round of an increased dosage of chemo and radiation, which would also probably kill him because of increased infections due to diminished white blood cells or (3) just live his life as best he could until the end, which was diagnosed as perhaps five to six months.

I pleaded with him to fight this to the end, to do everything he could to defeat cancer even if it meant larger doses of chemo. I was devastated when he made the decision to no longer fight. Wouldn’t it be better to die on the operating table than to quit fighting? Wouldn’t it be better to endure another round of chemo and radiation although the increased dosage would most likely kill him? But nothing I said could convince him.

In my book “Cancer Sucks – A True Story” I stress not giving up, never quitting the fight against cancer. I felt like a failure. If I couldn’t convince my own family to never give up, how could I advise and convince those I don’t know?  So, I quit writing. But only after my exile did I realize I had made a terrible mistake. I made Carl’s fight against cancer my own. I failed to realize that it was his decision, another subject I stress in my book. It has taken time, but I finally understand I can’t control the decisions of others. I can only be there to support them.

There are a lot of newspaper articles, posts on the internet, magazine articles, and books that tell us stories of what others have done when confronted with cancer, chemo, and death. Many are inspirational, which I believe is comforting and needed by many. But no matter what we read, the final decision to continue fighting or to let go is ultimately the individual choice each one of us will make based on what is best for us, or at least what we think is best for us at the time.

But if we are the ones making that decision, shouldn’t we also be thinking of our loved ones and how this decision will affect them? This is an area I want to explore in further blogs. I hope I will get much needed feedback from all of you. How often will I blog? I don’t know. But I do know I need to continue doing this, because if the information I share helps only one cancer suffer, caregiver, or survivor to better understand what they are facing, then it is worth everything.

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March 13, 2012

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?

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March 9, 2012

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.

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March 6, 2012

(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.

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March 1, 2012

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…

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