INTRODUCTION

This BLOG is simply a journal derived from my caring for a cancer patient, my wife Marilyn. I have chosen to publish this anonymously; thus I will simply be called Ted, and as you see I’ve included my picture. I chose anonymity simply to allow myself the freedom to say what’s on my mind without being self-conscious. However, you readers are welcome to provide thoughts—agreeing or disagreeing with my views and sharing your own experiences.
Learning that cancer has visited one’s family is at first difficult. But sharing of thoughts and feelings might be a vehicle for seeing cancer as less as of a curse and more as an opportunity. Thanks for your interest, and keep checking this BLOG from time to time for new additions.

HOW TO MAKE A COMMENT

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So including your email address may lead to an interesting dialogue between us. But you may omit that address.

Intro-1. BACKGROUND

How did I get started on doing a BLOG on cancer? In mid-February, 2009, my wife’s doctor discovered an obtrusion in her abdomen during a routine exam. Previous to this she felt great and had no pain or any signals that there was a problem. The doctor suggested that this protrusion might be the spleen and warned that it could indicate lymphoma (a type of cancer in the lymphatic system. She recommended an oncologist (cancer specialist) that could explore her condition more precisely.
After several scans and a biopsy, it was diagnosed as truly lymphoma. This disease causes growth in the lymph nodes and spleen, and is transmitted to these organs through the lymphatic network. It is different from more conventional cancer because, when it metastasizes, it is limited to this lymphatic network, but it is still potentially dangerous.
Fortunately there three positive factors present in her current condition. First, doctors say that the current chemotherapy recipe commonly used in treating lymphoma has a success rate of about 95% Secondly, Marilyn did not have any symptoms when this was discovered—an encouraging indicator. And finally, Marilyn has a positive attitude mixed with a good sense of humor, very important in winning the battle.

Intro-2. MY FIRST REACTION

Marilyn had always been healthy and energetic, never smoked or drank much alcohol, and ate balanced meals (which of course includes chocolate!) So getting into the world of cancer was totally foreign to both of us. Upon hearing the doctor’s warning we first kissed and hugged, then later walked around like zombies for a day or two thinking “What happened?” I would try to help Marilyn but didn’t know what to do. Then I’d go off and take care of myself for a while, but discovered that I was leaving her alone at the very time she needed someone.

In first dealing with the oncologist and learning about the complexity of the disease, as I started to understand discomfort and side effects of "chemo" (the chemical treatment), and the length of time to administering chemo, I was overwhelmed. Every visit to the doctor brought more data overload with changes in the diagnosis each time. The doctor would say “We thought it was one stage but then saw indications of another stage.” And at other times, “It affects type-B cells only, which is good,but then there are down-sides to that.” Cancer was a world I knew nothing about, a world I didn't want to enter, but one I knew I had to understand and embrace.

Intro-3. ALONG COMES M. D. ANDERSON

Our first doctor visited was a respected oncologist, a very intelligent board-certified man with a caring bed-side manner. But many in the community kept pointing us to a well-known cancer treatment center in Houston, M. D. Anderson. The rumor was that, although it is huge and on the leading edge of conquering cancer, it was a very difficult place to get in. My wife ignored those rumors, got on line, and completed an enrollment form for this hospital. She received an answer within a day or so inviting her for an appointment in three days. She collected all of the medical records and scan images we had and prepared for the meeting.

When we entered the facility we were not left hanging. Instead, we were given a detailed schedule of what they would do for us in the next 5 days: more extensive scans, blood work, etc., though they found the biopsies from the first doctor were adequate. We were assigned the head of the lymphoma department; he and an associate doctor provided us with many options and alternatives that might be ahead of us in our journey. After another few days of these tests, they would produce their findings and outline the treatment plan.

Intro-4. I MDA FEATURES

As we moved around M. D. Anderson, there were eye-opening surprises.
• Large comfortable weighting rooms
• Soft music and soft-lighted scanning rooms
• Gourmet-level food in the dining room
• Fresh newspapers, magazines and coffee delivered every day
• Usually not one, but two attendees at any desk
• A computerized screen in the waiting room indicating current status of any patient away for scanning
• A commitment to schedule; if they say it will be an hour, it’s not much more than an hour.
• A great number of auxiliary services—counseling, exercise, meditation, yoga, seminars on problems and diet, a free barbershop offering wigs and head covers, wheel chairs at all entrances to buildings, golf-carts to move people through a quarter-mile sky-walk, etc.
The list goes on and on. It was like they were telling the patients and care-givers that “We understand your life is hard and we’re going to help make it easier.”
What a blessing!

Intro-5. RESPONSES FROM FRIENDS

When I tell a friend or relative that there is cancer in our family, I get mixed reactions. There is generally a feeling of discomfort or uneasiness upon hearing this. People want to do something to make you feel better, but they just don’t know what to say. I'd like to compare it to another event. Suppose you just ran your car into a tree. So you tell me: “Hey, guess what, I just had an accident.” I might say "What kind of accident?" Or, if it’s a close friend, I might even add a little humor: "Alright, Joe, were you driving drunk again?" For the most part this is acceptable in our society.
Now imagine you say to me "My spouse has cancer." There is no set of responses from which I can choose; I'm on my own. I might have the clearness of thought to say "What kind of cancer" or "What organ was affected?" But most of us humans find that hard to say. Few people are aware of the dozens of cancer types that exist.

A more common response we hear is “You’re in our thoughts and prayers” or “Let me know what I can do.”
I’ll continue this topic with some suggestions in my next posting.

Intro-6. WHAT PATIENTS AND CARE-TAKERS OFTEN HEAR

I’d like to give my thoughts and suggestion on responses when hearing about cancer. First let’s look at the phrase” Our thoughts are with you.” This is not bad. At least it works well on a greeting card or email when you’re not face-to-face. And you’ve got to agree that it would be wonderful if others were always thinking of us. But eventually most folks, distracted by their daily tasks, would forget these best wishes. And certainly “My thoughts are with you.” doesn’t have the power of a hug, a kiss, or even a tear.
Next is the old standard, “You’ll be in our prayers. “ Now this is a controversial one. Let’s say party A meets party B and both parties are strong believers in the power of prayer; then, of course, this is great well-wishing and works well. But what if this cancer patient didn’t believe in God? Or, more commonly, what happens when the patient doesn’t believe in the power of prayer? Let me explain in more detail.
I believe in God but I don’t believe that God makes major changes in the physical world (like curing cancer) just for our benefit. Nor is God an entity that resides in heaven with a deck of cards, passing out favors to those who ask for help. So when I pray to God, I ask for things that I think are possible and in sync with the Bible: “Give me the strength to deal with this,” or “This seems unfair; help me understand of what’s going on,” or “ Teach me how go work better with Sarah,” etc.
Then there’s the phrase “Let me know if there’s anything I can do.” First, the patient or care-giver usually doesn’t feel like putting in an order for services (“Hey, I’d like a back rub every Tuesday.”) And these words leave the patient neutral, usually eliciting a lame “OK”, knowing that nothing will probably ever happen. But I’d like to offer an alternative. Suppose the patient creates a BLOG saying something like “If you want to help me, please give to the American Cancer Society” or “If anyone would like to help, check my BLOG for times when I’ll be needing a ride to the hospital.”
(I should add that people at Marilyn’s work place spontaneously announced that they were planning to deliver meals to the house on certain days in a given month. Not a bad idea!)
Finally, there’s always the cancer survivor or their friend who has survived. Their message goes something like this: “Hey, I really understand where you’re coming from, because I had cancer too. I didn’t believe it but the chemo caused me to lose (or in some cases gain) 20 pounds.” If there’s anything a new patient does not need to hear is the bad experiences he/she can expect--or even the alleged good experiences.
The fact is, and many physicians say this, that every person is different; their own physiology (body chemistry), their psychological makeup (sensitivity to pain), and the particular doses they receive are all variables. Some people have a hard time keeping food down, but only for a day. Some people lose very little hair, some lose a lot. These messengers of hope or fear need to stop providing this history of their treatment, and new patients need to ignore them.
Dealing with cancer is so complex that I think the best rule to follow is to take one day at a time and try to enjoy the good parts of each. Also, the staff of most hospitals has medicines and techniques of all kinds to help you cope.

Intro-7. WHAT PATIENTS AND CARE-TAKERS NEED TO HEAR

So what words are there to express interest and concern for the patient? Here are a few ideas.
(1). “I’m sorry to hear that, when did you first discover it was cancer.” This starts a dialog where the patient can relax and get some things off their chest.
(2). “I can understand your stress. My sister/brother/etc. suffered from cancer/stroke/limb-loss and we managed it pretty well but certainly had our down days.” This assures the patient that there’s a basis for one’s sympathy.
(3). Finally, consider this. “You know, I have never experienced diseases like that in my family, but I can imagine there will be times when you’re struggling and don’t know who to talk to. And it sure would make me happy if you just picked up the phone (or dropped me an email) saying that you just want to talk. I’ll be most happy to listen. We can take a walk or whatever."

Got any other ideas? I’m open to your thoughts."

Intro-8. HUMOR

One time Mel Brooks, writer of the Broadway show The Producers, was asked how he as a Jew can write a song like “Spring Time for Hitler?” He answered that for years we’ve tried to develop sympathy for the Holocaust victims and be sensitive to the evils that Hitler created. And this certainly is important. But realize that Hitler himself was insensitive to attacks, arguments or threats. There is only one thing that would really make a fool of Hitler and put him in his place: that is humor. Making him the butt of jokes and portraying him as a clown or buffoon would be totally degrading. It sends the message “We don’t take you seriously.” Hitler hated and feared this.
Similarly with cancer, a sense of humor is always appropriate and can attack those cancer blues.
For example, Marilyn, when she found out about her condition, decided there would be no baseball caps for her. Some kind of wild wig with equal crazy clothes would be just fine.
Another situation involves a patient who told her brother about her condition. The brother, who had just had a heart attack several weeks earlier, said he was angry about this because this was going to take all attention away from him. The cancer patient replied, “Sorry, cancer outweighs heart disease any day of the week!"

Finally, a staff member at M. D. Anderson one time, on her way to an exam room, passed by a wating room. She hollered out to a barium drinker "So what delicious flavor do we have today." The patient replied "Today we’re having a Martini Barium." The passer-by replied, "Well what the hell, it's five o'clock somewhere in the world right now, isn’t it!"

Intro-9. THE WAITING ROOMS

Cancer patients and their partners spend a lot of time waiting. MDA processes over a thousand people a day. There is plenty of staff, but just a lot of patients. Although the process is efficient and friendly, a test can take up to two hours at time, but most people are used to this and so are patients. Some get tired and take a short nap, some read a newspaper or book, listen to music on earphones, and then some just talk. Some are required to sip on a barium drink (in preparation for a scan), flavored as strawberry-banana, cherry, you name it. Some are very slow at finishing the drink, hating every sip. Others have developed the ability to push it down quickly to "get it over with." People love to show their hatred of this, though the nurses are serious about this and not afraid to encourage people to “drink it all.”
The conversations are often free, open and loud, which shows how open and trusting that the patients have become over time. Many talk about their past or up-coming surgeries. Surprisingly, some of the surgeries involve benign tumors but located in dangerous areas. The talk even covers cancer surgeries involving deaths of husbands and parents.
One time I was intrigued by a woman who was very thin, walked with a cane, and slept most of the time (perhaps dealing with chemo). She sat with her husband but with her eyes closed. After 45 minutes of rest, she got up and began to argue with a nurse saying that she decided she did not want a certain treatment. Her husband stood on the side and observed with a feeling of concern. The nurse told him that such a decision was up to her. After some loud verbal exchanges the patient and her husband sat down. Ten minutes later a document was given to the woman for signing. She signed it and then later moved on to her planned scan or treatment.

Intro-10. IT AIN'T LIKE WHAT YOU THINK

Before I went to a cancer facility, I had strange ideas about the patients, how they looked and what they did. I envisioned people lying in bed, wearing night-wear all of the time, moving slowly or immobile. I saw them as quiet, silently praying, and seldom talking. How wrong could I be. Today’s cancer facilities do a lot of out-patient therapy. The patients, unless they’re in a scanning or exam room, wear stylish shoes and clothes. Only a few wore head coverings or cloth filters over their mouths. (Infections are a big issue in cancer hospitals because chemotherapy sometimes destroys white cells). They were intelligent and interesting, passing the time reading, talking, or listening to music. In a word, they were all normal people like you or me. If a person was sweet and caring before, they’re sweet and caring as a cancer patient. If they were obnoxious before, they’re obnoxious as a cancer patient. The only way they’re different is that they do what needs to be done, regardless who’s looking. This was discussed in another posting, but here’s an example.
One of the slowly dying myths of family living is that of men being stronger than women, which follows with the theory that men need to always be the leader. The cancer community quickly destroys these assumptions. Many times I observed a touching activity where a strong woman, acting as care-giver, would be pushing the wheel chair of her husband. Often she would wait for hours till he returned from a scan or test. In both cases the man had trouble sitting upright and so would hunch over. I saw tension in his eyes as he tried to take charge of the situation and give his opinion on what just happened during the scan, trying to have an authoritative role, yet facing the fact that he totally depended on his wife. In a way it’s refreshing, though sad, to see people change roles and make it work.

Intro-11. COPING INVOLVES DARING

In our everyday life, we humans conform to many rigid practices, rules, and assumptions. It makes life simpler. But coping with cancer often involves ignoring these conventions to move on with the battle. The examples I provide here are perhaps minor and irrelevant. But seeing the styles of survival gives my brain a wake-up call. Here are some stories that explain.
Going back to my childhood around age 10, I remember having a great curiosity about my grandfather getting an artificial limb. He lost his leg from diabetes. We visited out various stores and had him measured as samples were presented. It got drilled in my head that wearing prosthesis was a must and that people who didn’t were either swimming or too inactive to need it. Yet what a surprise came to me when is saw a young lady at M. D. Anderson, missing one leg, and zooming down the hallway on just crutches. This mode of transportation just about doubled her velocity; I suddenly understood that that when you’re active, getting there fast is more important than worrying how you look. I could see myself in the “look good” attitude, while everyone was passing me up through the “get it done” mode.

Here’s a second example. While sitting in a waiting room I noticed a young man with his about-8-years-old son, a cancer patient. They talked with a middle-eastern accent which made me wonder if he had come all the way to Houston from another country. What devotion and discipline. Deep down I wanted to go talk to them but I thought this would be a violation of their privacy.
After about 20 minutes a middle-aged woman patient came up to the boy and started a conversation. It began with “How wonderful it is that you speak two languages,” and then explained how in her own life how she learned Spanish as a second language. Next she asked what kind of cancer he had. In my mind I freaked out; “How dare she ask this, it’s inappropriate,” I thought. But she kept pushing. The father answered the question and the boy began to relax. They got into a very nice conversation comparing how each of them had traveled the healing. Again I saw the practice of daring rather than waiting; that “cancer” was not a bad word, and your treatments and challenges were worth sharing. “What a different world this cancer community is,” I thought.

Intro-12. THINK POSITIVE

Yes, “think positive” is an old bromide that we often hear but can’t always do. But recent studies in psychology and medicine have revealed that thinking positive can actually improve and maintain your health, while being depressed does the opposite. Although it’s easy to talk about positive thinking, it not always easy to practice such thinking—especially when we’re having a bad day. Here are a few thoughts that I found helped turn on my “positive” switch.
Recently, a local TV station aired a documentary on M. D. Anderson success stories. This particular story involved a middle age woman who raised horses on a Texas ranch. After complaining to a doctor about a pain, it was discovered that she had a tumor on her brain, and the tissue in that tumor was similar to tissue found in lung cancer. There may have been some metastasis involved here. Anyway, she spent some time in MDA under special care. I can’t remember what was the specific type of treatment, but a several years later when this documentary was made, she was still cancer free.
Now for a long time we have heard that lung cancer is one of the most deadly and incurable diseases, and here was a case that defied the statistics. Actually, those were old statistics; the latest ones identify many kinds of cancers that are curable in 80-95 percent of patients, and it keeps getting better.
I was a little unsure if I could believe this, until the doctor narrating the film described his strategy. It seems that about five years ago MDA used a business model of dividing units of service into treatment types. Thus, when you entered, if chemo was the treatment you went to the chemo department, if surgery was the treatment, you went to the surgery department, etc. But they have recently changed the model to dividing by type of cancer. So if you had Lymphoma or Hodgkin’s disease, or a cranial tumor, etc., you went to a department that treated that cancer type. And this was more effective because the treatment now involved a team. An Internal Medicine person, cellular expert, radiologist, and perhaps dietician joined together to make decisions on any one patient. Another part of this model is not to start in the laboratory by looking at the biopsy and then take the solution to the bedside. Rather, start at the bedside, observe how the patient reacts through various trials, and then take that news to the laboratory.
This way of administering medicine has dramatically helped to enlarge the scope of success.
I think that there is something we are trained to do as children to be safe: be careful and think the worst. Then the evil won’t get you. And this is the basis of much fear and anxiety regarding cancer. Similarly, we tend to shudder when the “word” cancer is mentioned; we see an automatic death penalty. This way of thinking is based on a loose foundation. Rather, look at the facts and statistics as your foundation. Look at the devotion of the staff and get excited about being a part of the team that will make you well. It’s difficult, for sure, but if you can do it, it will make life more livable. Think positive!

Intro-13. COMING EVENTS

In the first week of March the head doctor will present a plan for treatment of the Lymphoma. This will undoubtedly involve the use of chemotherapy. (Note that while some cancer treatments start with surgery and then follow up with chemo, this type of cancer does not require surgery.) Future reports on this blog will describe that plan in detail and cover some of the issues and side effects of chemotherapy and how we’re dealing with it.