UPDATE - FEBRUARY 9, 2008

After publishing this blog last summer, I’ve had some ups and downs, but more ups than downs and now things are looking good. Last summer included my annual “bike camping trip” (27th consecutive year and counting). This is a big deal to me, part of what I am and it symbolizes the future. It remains my definite plan to ride across the country again as a celebration of cancer survivorship. This time I want to take the Southern Route which goes from San Diego, California to St. Augustine, Florida.

In regards to health – I had problems in the fall, but in November the doctor changed my medical regime and this has worked very well. Not only do I feel much better, but the cancer marker is back into the normal range. The change was not standard pancreatic protocol, but it was well reasoned and the “standard” treatment was not working very well. I am grateful that my oncologist was able to “think outside the box” and try a different protocol. As I say in the blog, in tough situations, it is important to be open to nonstandard untypical approaches – not rashly or without scientific basis – to get the best result. I think, unfortunately, most doctors are unable to step outside established protocols. I’m not sure why that it is – whether they are covering their butts, afraid of peer criticism or if it’s just hubris. Oncology is part art and part science and the best path of treatment is not always or even usually known. I emphasize again what I say in the blog and that is, it is important that both the doctor and the patient be open minded about treatment possibilities.

All the best in 2008.

Jerry

ONE CANCER STORY

My cancer story begins in California where I had been living for a year and a half. As a contractor on assignment, I had not established roots there nor did I have a real “support system”. It seemed that out of nowhere I became sick. I had trouble eating and was very weak. In the second week of illness, an ultrasound showed some kind of tumor. Blood tests revealed an extremely low and dangerous red blood count. No wonder I had no energy and had trouble walking up a flight of stairs.

Three days later in the middle of July 2000, I was on a plane to Des Moines, Iowa. Why Iowa? Why the Hawkeye state? The biggest reason was family support. Knowing I might face a tough situation, I needed that support and it has, indeed been critical in my journey, especially early on. A second reason was I confident that I would get good care here in Iowa City. And I have. That is not to say, I would not have received good care in California, but there I would have been starting in a huge system as an outsider. Although I had not lived in Iowa for many years, I did not feel as if I would be an outsider here and importantly my family lives in Iowa City, the home of the University of Iowa and its highly regarded medical school. The associated hospital (UIHC) is comprehensive and I sort of assumed I would end up there. Like many large organizations, the UIHC’s bureaucracy can be frustrating and impersonal, but you take the good with the bad. The hospital staff’s knowledge base and skills are a huge plus, but you must guard against being just a number. And you need to be involved in your treatment decisions and not be a passive about them. And sometimes, you simply need to stick up for yourself and advocate for what you believe is best for your long term health.

I am writing this blog / story to offer some thoughts to cancer patients - about oncology and my mostly good experiences with my medical team, about fighting for survivorship and most important, things that may help those with cancer. If any of this is helpful, I am glad. If you have ideas or suggestions, please share them in comments.

I want to thank Maggie S, graduate student at the University of Iowa’s Writer’s Workshop, for her writing help. The Writer’s Workshop has a “Patient Voice Project” featuring 1:1 mentoring with graduate students and I was lucky to be part of this program. Thank you, Maggie.

This blog is organized into sections as follows:
1)The Start of Treatment
Diagnosis, a good Surgeon and an unfortunate mismatch with my first Oncologist.
2)Oncology – “the Art and Science”
3)Oncology - “Thinking outside the Box”
4)Cancer Fighting and Attitudes
5)Cancer and CAM(Complimentary Alternative Medicine)
6)You and Your Medical Team
7)Cancer and Faith
8)Other Cancer Fighters and “Fighting Like Hell”
9)The Road Ahead

The START of TREATMENT

Better to be “trouble” than to be dead.

Back in Iowa City, I entered a small hospital where I was diagnosed with one of the worst cancers - pancreatic. That was a tough day – a very tough day. I felt as if I had been handed a death sentence. It was a day of sorrow and loss, but the next day, I was ready to move on, hope for the best, fight and aim to survive. This was not some kind of heroic response, but simply there was no other choice if I wanted to give myself the best chance for survivorship. Looking back it seems strange that I had such short lived emotion about the diagnosis, but as I said, there was no choice. My plan was and is to survive and to live as normal a life as possible. And by normal, I mean normal for me which includes amongst other things riding my bicycle across the country again.

The small hospital was unable to deal with my situation so I was transferred to oncology surgery at the University Hospital (UIHC) where “maybe” a particular surgeon would undertake my case. He saw something in the scans and tests that perhaps others missed and, living up to his reputation of willingness to take on complicated surgeries, he did just that. A 50ish man with a good bedside manner, he radiated confidence and decisiveness - good characteristics for a “cutter”. The tumor was very large and surrounded critical blood vessels. I was bleeding internally and blood transfusion only temporarily raised my extremely low red blood count. The surgery took 9 hours and left an 11 inch scar. Later, I learned most surgeons would not have even undertaken my surgery (called the Wipple Procedure in which the infected part of the pancreas is cut out and your stomach replumbed using a stent) because of the complexity of the surgery and “expected” poor prognosis. Very probably that surgeon saved my life. I had wonderful family support. My parents and brothers came daily and my brother Steve spent countless hours at the hospital. A big hospital moment came one evening when I had my “first fart”. Because of the stomach replumbing you are not allowed to eat until you do that. This happy event came six days after the surgery. As a bonus Steve was there to share the excitement and progress. I promptly called the nurse’s station and family members and the next day I returned to eating. It was weak gruel, but it was a step. Another hospital step came when I asked to have an exercise bicycle and an encouraging nurse hunted up an old forgotten one in the back of a closet somewhere. I have ridden tens and tens of thousand of miles and use a bicycle for local errands, for relaxing longer rides and as a bicycle tourist. I have ridden in the Australian Outback and across the United States. Bicycling was a natural and comfortable way for me to start building back up.

I left the hospital depleted, 40 pounds below my normal weight and with a poor prognosis. It was a blessing that I had family to go to. The first few days, I could not have realistically taken care of myself, let alone the good care that I needed. My first goal was to regain weight and strength and forced myself to eat a little more than I felt like. It was going to take awhile. The first weekend out of the hospital, a brother brought an old bike for me to use (mine was in California) and as we took a very short neighborhood ride I felt euphoric rejuvenation. More rejuvenation came with reading a couple books, one by John Grisham and the other by Michael Crichton. Nothing special about them, they were simply easy reads, page turners that held my attention. Somehow it brought a return of being able to focus and “normalcy”.

The next medical step was being assigned an oncologist. Here I was not so lucky and after seeing Oncologist A three times, I asked to change oncologists and with the help of the surgeon this was easily done. Why did I think it was necessary to change oncologists? At our first meeting, when I stated my intent to ride my bicycle across the country again, he had a fit. When I said I wanted to be treated aggressively and go for life, he whined (and I do mean whined) that people like me complained when the outcome was not good. This would not have been true, but to the point, I thought you pathetic (censored) – here I was fighting for my life and he was worried that I would complain about any bad outcome. I felt this melancholy-looking man was most interested in smoothing a way to death for me rather than fighting for my health and survival. I don’t question his medical knowledge, but if I had the kind of attitude he wanted me to have, I would be long gone.

Sometime after that, I had my chart and read what he had to say - very interesting. He labeled me “trouble”. Well, better trouble than dead.

ONCOLOGY – “the Art and Science”

Asking my surgeon about changing oncologists was our last appointment. There was no need for more surgical follow up. His part was done. From the appointment, we marched up to the scheduling desk where he directed them to change my assigned oncologist. It took about ten seconds. Again it was potluck, but this time it was a good match. Oncologist B is a big thoughtful man who looked at what could be done positively without denying the seriousness of the cancer. It was a breath of fresh air. My immediate course of treatment didn’t change, but now I didn’t feel like I had a doctor holding me back and giving up on my survival. Rather, I had a doctor who was working with me and focusing on maximizing my chances for health and survival. The treatments were not without challenges. Towards the end of the initial course of chemotherapy, my body reacted with a severely obstructed bowel that put me in the hospital for a week. Then in September of 2001, after a year that included the surgery, radiation, the initial course of chemotherapy and a follow up reduced maintenance chemotherapy, I serendipitously developed shingles. Serendipitous because this took me off chemotherapy and for a good while I was not to need it again.

Yes, a big advantage of going from Oncologist A to Oncologist B was their attitude: Going from someone who was uncomfortable with my fighting for health to someone who was on “my team” and supporting and assisting my fight for health and survival.

Also more and more, I have come to understand that oncology is part art and part science. Especially in tough diagnosis, the willingness of oncologists and patients to have an open mind about treatment options and approaches is critical. Not to rashly rush into non standard protocols nor to rush off to Mexico for the latest “cure”, but to be able to think “outside the box” and not be straight-jacketed by protocols which are, after all, just general guidelines. The art part of medicine is harder to judge and unfortunately many oncologists, if not most, turn their back on its possibilities. What is the art of medicine? To me, it is taking the facts and “established” medical dogma of a situation and then asking if maybe other explanations or treatment courses might be appropriate. It’s knowing when not to take risks, but also being able to put the situation in context and knowing when to take calculated risks. The art of medicine is not the art of the Cubist, but neither is it the art of portrait painting. Maybe it is the art of Impressionists. Oncologists B and I undertook a couple then non-standard treatments: nothing rash and nothing that had no basis, but were outside the “standard” protocol. These add-ons helped and are still part of my medical regime. He was also open to the possibilities of Complimentary Alternative Medicine (or CAM) and dialogue with my primary care physician at the UIHC who is both an internist and a CAM practitioner (more on CAM later). Oncologist B’s willingness to employ art and science was like attitude, a needed change from Oncologist A.

ONCOLGGY – “Thinking Outside the Box”

When Oncologist B left the Hospital and Iowa City for private practice, I was naturally concerned, but it was reassuring to know that this time the assignment of an oncologist was not potluck. Not potluck because my nurse, Oncologist B’s primary nurse, was responsible for connecting me to a new oncologist. UIHC oncologists have a primary nurse and they too, get to know you and your case. They are key members of your health team. I am fortunate to have a nurse who sees being a strong advocate for patients as an important part of her role and has been very helpful to me. Besides being supportive and a thinking member of my health team, she is a conduit between me and the doctor. Not routinely, but when I have a particular concern or issue that needs to be discussed, she can relay those thoughts to the doctor and give him a heads up on it or maybe resolve the issue. She also coordinates tests and treatments.

I suppose I am a somewhat different kind of patient. I don’t try to “be the doctor”, but I ask a lot of questions and raise a lot of issues. Many doctors would view me as a royal pain in the butt. I need a doctor who is flexible, who can “think the outside the box” and who is comfortable having a patient actively involved in therapy choices and not passively waiting to be told what to do. So my nurse carefully singled out an oncologist and asked if he would undertake my case. And fortunately Oncologist C agreed. He is what I call a “good thinker”, a doctor who is able to look at a situation with solid scientific underpinnings, but not be penned in with rigid protocols and dogma, who can think clearly and creatively without being rash or “out in left field” and who understands the artistic side of medicine. I imagine he is a person who likes puzzles and, like me, is or was an ace bridge player.

Over the last couple years, I have had medical challenges and am receiving considerable medical attention and treatment. Things are now looking better. I’m not back yet to where I was a couple years ago, but am going in the right direction. During this time, it’s been particularly important to have an oncologist able and willing to think outside the box, rather than just plug in the standard protocol. Sometimes this is a seemingly innocuous treatment choice. For example, at this time, I need iron boosters. The current standard is to do this via an IV infusion which takes several hours and always bothered my stomach. What works best for me is a simple IM shot, much quicker and with less stomach distress. Another and key example of “out of the box” thinking was to do a needle biopsy before restarting chemotherapy. When inflammation, but no actual tumor was found in that very small sample, we tried a drug that deals specifically with inflammation or mucin. The drug was not curative, but I felt much better almost immediately. It has long term value for me and is still part of my medical regime. Most oncologists would have automatically restarted the chemotherapy, bypassing the needle biopsy which provided useful information and a drug that helps me.

CANCER FIGHTING and ATTITUDES

Attitude matters, not only the attitude of your health team, but even much more your own attitude matters. Of course, patients should not be in denial of their situation and, of course, they should be optimistic and keep their heads up. Moving beyond obvious truisms, I would like to offer these related thoughts: First, think long term. Two, don’t let people peg you as some poor sick person. Three, cancer survivorship is just part of what you are and your story.

For cancer patients it can sometimes be hard to optimistically think long term, but it’s important. Have a positive goal and long range images and focus more on them and less on any current problems or discomforts. Whether you focus on a grandson’s graduation, an exciting upcoming trip, on long term health or whatever, these are good images. I believe this especially applies to people undergoing rough treatment options. Some can be quite toxic and you can get caught up in how bad you feel then and there. Wrong. Better to focus on good things for yourself down the road. Maybe imagery will help you achieve this. I created a short tape about long-term health, enjoyable routines and the dramatic and fun zapping of cancer cells. When I have a difficult chemotherapy treatment, I find that closing my eyes and mentally replaying the imagery tape makes for less severe side effects. Thinking long term does not mean denial of problems. Instead, it means focusing on hopes and aspirations. Keep your doctors and nurses informed of any problems and treat your self kindly. If you have stomach distress, take something for it. There are no points for obstinacy.

Perhaps it’s just my personality that rebels against being put in the “poor sick Jerry” category. Maybe it’s just a pet peeve, but to me, it is grating and not helpful when people focus on how I feel at the time. This is especially true when undergoing rough medical treatments. Since I believe it is important to think long term, I am put off when people seemingly want to focus on how I feel then and there. I realize this is well meaning and I do appreciate people’s concern and prayers, but those concerns and prayers should be for down the road health rather than how you feel today. Some may say I have an “attitude”. I hope so.

I am proud to be a cancer survivor - perhaps perversely proud of being a survivor on one of the worst cancers – but, we are not just cancer survivors, we are whole people. That is another reason I am so put off when encountering an over-emphasis on how I feel today rather than the long term. I refuse to be defined by my illness. Cancer patients have relationships, interests, accomplishments, experiences and goals outside of their illness, and cancer is just one part of their story.

Cancer is an intense experience and hopefully, we grow and learn from the experience and improve as people in some way. Fighting cancer takes time and energy and undoubtedly some of one’s perceptions change, but underneath we are much the same basic people.

I am not saying that getting healthy is simply a matter of attitude and belief, but I am saying that it helps. I believe that people with tough diagnosis who maintain (using Barak Obama’s words) “the audacity of hope” do better, period. So friends, dream and don’t be afraid to hold out hope. And do what you can to promote you health.

CANCER and CAM (COMPLIMENTARY ALTENATIVE MEDICINE)

I believe that CAM is also an important cancer fighter.

I am very lucky to have a primary care physician who is both an internist and a CAM practitioner, a caring soft-spoken doc who has helped me in many ways. She helps me sort through options, provides support and a sounding board, is a source of good information and is a very strong advocate for my health. I much appreciate all of this assistance. CAM is basically unregulated and there is some erroneous information out there. And unfortunately, there is a gulf and often negative feelings between doctors and CAM practitioners. Many doctors blindly and arrogantly scoff at CAM options and CAM practitioners return the feeling in kind. And sadly there are charlatans masquerading as CAM experts taking advantage of desperate people. The key is to deal with reliable sources and to do a little research.

CAM is a wide ranging field that includes everything from chiropractic to visualization to herbal therapies to diet to acupuncture to healing touch and so on. The methodologies I use are: 1)herbal 2)”diet” and 3)visualization. There are many viable CAM methodologies, some of which I want to explore in the future.

Herbal therapy is diverse and includes such disciplines as Homeopathy, Chinese and Ayurevedic (Indian) medicines. I follow a more general herbal path. As herbal medicine is mostly unregulated, the quality and bioavailability between particular product brands can be huge. Sorting through these brands is just another way a qualified CAM practitioner is helpful. I recommend the book, “Prescription for Nutritional Healing – 4th edition”, by Phyllis and James Balch. It contains concise descriptions of the uses and contraindications of many herbs and treatments. Keeping in mind that I am not a qualified practitioner, here are herbs and supplements I use:
1)Omega-3 Fish Oil from Country Life – whatever brand you use, it’s important the product comes from deep sea sources so as not to be contaminated with mercury.
2)Milk Thistle – a good herb for the liver
3)Quercetin – is highly recommended by cancer herbalists.
4)Chromium Picolinate – helps maintain glucose levels.
5)Ginko Balboa – is good for circulation and widely used in Europe. A warning – it does thin the blood slightly so it’s contraindicated for people taking a blood thinner.
6)A basic multi vitamin.
7)Pancreatic enzymes - because of my surgery, I have fewer of these enzymes required for food absorption.
8)an immune booster- in other advanced countries the use of herbs is far more accepted. In Japan, chemotherapy patients are routinely prescribed an immune booster like medicinal mushrooms.
9)A Vitamin D supplement – there is growing evidence that Vitamin D helps prevent a number of different cancers and if it helps prevent well maybe …..
10)Alpha Lipoic Acid (ALA)
(Please note that a few herbs and supplements are contraindicated with certain western drugs. And again, I am not a practitioner.)

Diet is another wide ranging topic. I am not referring to diet as in losing weight, rather as another weapon against cancer. Increasingly there is research showing the value of diet in preventing cancer. There is also research showing the value of diet in fighting existing cancer and promoting health for cancer patients. Beyond the obvious of good nutrition – eat more vegetables and fruit, etc., my basic belief is that for cancers of the digestive system, processed sugar is a huge no-no. I believe this for three reasons. First, processed sugar contains no nutritional value and is at best just empty calories. Second, I am not diabetic but, because of the surgery, I produce less insulin and so simply need to try harder to keep my glucose level down. Third and controversially, it’s my opinion that processed sugar is a cancer feeder. There is recent research supporting this idea and many well regarded CAM practitioners also agree on this point, although most oncologists would not. Besides processed sugar, I avoid honey and unfortunately, maple syrup which I like a lot. I also avoid artificial sugars and corn syrup which is probably even worse than processed sugar. I do drink fruit juices, but in small quantities. I use a little black strap molasses because even though it is high in sugar content, it is packed with nutrients. I also use products that contain small amounts of evaporated cane juice which while not ideal is still better than processed sugar. Cutting out sugar is harder than one would imagine. In today’s diet, it is almost ubiquitous. Besides sweets, other products contain processed sugar or honey including many breads and pasta sauces. It may be that my diet has carried this anti-sugar thing farther than necessary, but hey, it seems to work. (And more generally, the very high consumption of processed sugar in American society is creating huge problems.)

Visualization is also a tool towards health. For me this entails listening in a relaxed state to a nine minute tape I created that emphasizes killing cancer cells and good health. As mentioned earlier, I also find this helpful when undergoing chemotherapy. Incidentally, there is growing scientific evidence of the mind body connection. (Some of that research is being done here at the University of Iowa.)

YOU and YOUR MEDICAL TEAM

This section is not ready to publish. I want to explore the relationship between patients and their medical teams which I believe is an underappreciated health factor. From reading this blog, you can see I have had mostly good experiences with my medical team. I want to examine what makes for a positive and constructive relationship between patients and medical staff. Sorry for including an unfinished section. Blog mechanics require that I include it now and then edit it later to obtain this spot in the story.

CANCER and FAITH

Religion and faith is not an easy thing for me to talk about. While I have always been a Christian, except in a general way and as a basic belief system, religion had not played a big role in my life. In large part this is because I am put off by far right politicians and clergy who push their views and exclusively their views as “Christian”. Although I believe my opinion of those far right politicians and clergy is correct, it was not right to let it impact my approach to faith. Having serious medical issues brings a new focus. I believe that God has been has been at my side and especially at the most critical points (i.e. in the hospital after surgery and at Catscans) and have felt his direct presence. I also believe that prayer matters. As I said, I struggle with how to say this. I don’t want to be preachy or sound like a televangelist and am uncomfortable discussing faith issues, but feel it is important to say these things. My basic faith has not changed; rather it has taken a more central role in my life.

In my forays to the cancer clinic and chemotherapy units, I usually make a detour to my old hospital room where my recovery and miracle began. This reminds me of God’s grace and role in my health and I issue a short prayer of Thanksgiving. I believe that God is behind my recovery. I also believe that I should do all that I can to promote my long term health and survival. I don’t think these are contradictory thoughts.

OTHER CANCER FIGHTERS and “Fighting Like Hell”

I advocate doing simple research on cancer and your specific kind of cancer and the internet makes this very easy. My routine is Monday through Friday looking at the site - http://news.yahoo.com/fc/Health/Cancer - to see if there is anything pertinent to me. Most often there is no new information that I want to pursue, but when there is, I can look further into that and ask my oncologist or CAM doctor. If you have internet access, the looking is free. If you don’t, maybe a friend or relative would help. The routine only takes about five minutes a day.

I also advocate regular exercise. For me, the main form of exercise is bicycling. This is my thing and I have ridden tens of thousands of miles. I also like walking. Finding an exercise that you enjoy helps. There are substantial mental as well as physical benefits to regular exercise. I also have a short routine of exercise and simple weight training. I don’t particularly enjoy this, but it’s a good thing to do. One of my exercises is push-ups. The first time after surgery I tried to do them, I collapsed on the floor unable to do even one. It took several weeks to be able to do that significant first one. It was a mark of improvement and I celebrated with a fist pump like Tiger Woods sinking a long putt. I’m a long way from a Tiger Woods level, but I still do push-ups and get a feeling of satisfaction with them.

Finally, cancer patients should “fight like hell”. To me, this encompasses everything I’ve been discussing: doctors who think “outside the box” and appreciate both the art and science of medicine, attitude, thinking long term, not letting people peg you as some poor sick person, rather seeing yourself as whole person and not being defined only as a cancer patient, doing what you can to promote your health by utilizing appropriate CAM options, religious faith and exercise. Fight on! To translate the old Yiddish phrase – “To Life”.

The ROAD AHEAD

Recently I received very good health news with excellent blood work and a good Catscan. Progress. I have been receiving significant treatment and medicine over the last two years. This does not end all of those treatments, but I am now able to reduce in frequency that most toxic one. Great news!

I have lots of plans for the future. Not just riding across the country again, but ongoing routines and interests - upping my strength, learning Spanish, writing more on various topics including politics and so on.

I will be updating this blog from time to time and hope to hear from you and your health ideas.

Cheers,

Jerry