Item 11. WHAT IS THE LONG TERM FUTURE LIKE?

After the four months of chemo the patient will most likely be in remission. (If remission hasn't occurred, adjustments will be made to assure remission). In the first six months she can travel, but after that, no traveling will be allowed until there is satisfaction regarding the trial drug Zevalin. Over at least four years she will be checked for any recurrence. As long as the lymph nodes remain their normal size of about 1 centimeter, she will live a long and happy life. The lymphoma will most likely be present but in dormant mode, which is harmless. If there is any resurgence in growth of lymph nodes, simple techniques can be implemented to correct things.

Item10. WHAT’S THE TREATMENT SCHEDULE?.

There are four 28-day periods (months) in which chemo ingredients are administered. These injections occur in the first 3 days of each “month.” (Note that month in quotes means "not a calendar month.") On the Wednesday of the second week, Ritaxin is administered again. In the last week of the “month” an assessment of the progress will occur to determine the strategy for the next up-coming “month.” In other words, “She’s been given these given medicines; how much has it wiped out he cancer?” At this point the patient should be in remission and has six weeks off, during which she is allowed to travel. At the end of those six weeks, a practice run occurs of giving the trial medicine, Zevalin. Then a six week waiting-period passes before this happens, a window in which the patient is allowed to travel. Then a real injection of the Zevalin will occur. This is a radioactive medicine that assures the disease stays away. Then monthly checkups will occur for several years.

Item 9: MARILYN’S STAUS REPORT – 3/18/09

In general, the key indicator of health is a measure of how many red and white blood cells have been lost. (Chemo ingredients tend to deplete the cell count). Marilyn's blood tests show that her red, white, and platelet cells are a little low but within acceptable range. (Note that chemo tends to kill blood cells). In fact her levels have acatually improved since 5 days ago. Why would they grow in this chemo environment? Because at first the spleen holds platelets hostage. Then the chemo attacts the the spleen and starts to free those cells—thus the increase in cells and plateleets. Next, as more chemo is in introduced in the body, the cell count starts decreasing. This decrease reaches it’s low about 7 days after chemo was introduced. Overall, her status today looks good. Marilyn is reading the Lance Armstrong book, It’s Not About The Bike, which covers two themes from Marilyn’s life: her love of cycling and herbattle with cancer.

Item 8. HOW NURSES MAKE LOVE

Now based on the title, if you were expecting something x-rated, then you have a dirty mind (or maybe I was just trying to get your attention). Actually, this probably should have been titled “How Nurses Make Love of Service Complete.” Let me explain. Through most of my life I have not needed to go to a hospital. My experience with nurses was limited to the doctor’s office or out-patient scene. For the most part, they gave shots, administered x-rays and scans, collected body readings, and kept records. But in the curing of diseases, nurses do much more, particularly in the psychological and communication areas. In that sense, their “love of service is complete,” as the title implies. Their love is comprehensive and deals with the soul as well as with the body. We have seen a nurse tell the patient all of the steps that had to occur. “Do you understand or have any questions?” she’d say. “No questions; I understand” said the patient. The nurse paused and then said, “You’re worried aren’t you?” The patient admitted it. She then explained why there was no reason to worry. And then a big hug. And as we walked out the door and down the hallway, a couple more hugs. Or there’s the little lecture we got on how to survive chemo. “Just relax, try to change locations and go somewhere that’s safe and simple. Change your thoughts. Deep breathing,” the nurse said. No matter how busy she was, this comforting came first. Finally, there was the time when Marilyn had to go for her first Pets Scan. The nurse was probably busy but she decided to hold her hand during the prep period. This is something that doesn’t happen often, so she didn’t have to hold Marilyn’s hand; she just wanted to. And it really helped.

Item 7. HOW FAMILIES MAKE CONNECTIONS

Talking to cancer-victim families is a different experience, much more different than working in the office, enjoying a ball game, or going to a party. As you sit in the waiting room or lounge area with other patients, a part of you wants to be quiet and respect their privacy, and the other part of you wants to make a connection and share thoughts. Before you can make that connection, you have to wait a few weeks and allow them to start the conversation. At first there’s the smile or laughter as the say “I just saw you down at the pharmacy, and now you’re here; It looks like we’re following each other.” Having broken the ice, we say to them some other nugget of small-talk: “And where are you folks from?” And so the conversation has started we all begin to relax. And it isn’t more than a couple of sentences into the conversation that immediately the big question comes up from their side: “And which one of you has the cancer….I can’t tell?” And next there’s always comes that second question: “And what kind of cancer do you have?” It’s a question that NEVER is asked in the outside world but is ALWAYS asked at M. D. Anderson Clinic. Putting a label on it and sharing it is what adds all the meaning and bonding and support that everyone needs. We now realize we all belong to the same club, we’re not alone, and it seems much easier to handle. Here’s another example I experienced. We’re riding the golf cart down the quarter-mile skywalk that takes us to another building. Two women, call them A and B, look at each other and say nothing during the whole trip. The cart finally arrives at its destination and A says to B, “It seems I know you from somewhere. Did you work for IBM or Enron at one time?” B replies, “Yes I worked at IBM, and I recognize you too. Can you believe….it’s been eight years?” They then exchange names and immediately A says to B, “So what kind of cancer is it?” B says, “Lymphoma….and you?” A replies, “Ovarian.” Then a little more chat, followed by “Sorry, I’ve got an appointment. Nice to have met you and good luck.” They part. Sounds like the expression in our language, “two giant freighters passing in the night”; quiet but powerful. All of us at some time have made a reconnection. Maybe it’s ten or twenties years later—maybe on a plane, at a party, or whatever. We exchange chat about the old days and then we part. It usually doesn’t have much meaning to either party because the old days are gone and somewhat meaningless. But for the cancer victims it’s sort of a re-charging of the spirit, an addition of another person to the big cancer network, the knowledge that we’re not alone but in this boat together.

Item 6. TED PLAYS DOCTOR

As I may have said before, Marilyn has a device implanted in her body called a CVS (Central Venous Catheter). It’s very commonly used for cancer patients or anyone who will receive frequent injections and bypasses the complex injection of a needle in a vein. Basically, a plastic tube is connected to a main vein near the heart and threaded near the clavicle and emerges through a small hole in the arm above the elbow. Any nurses needing to inject medicine into the patient simply hooks the medicine container into this tube and the medicine flows with little bother to the patient. (You can use the same device for taking blood). The only issue is that the patient may wear this for many months while he or she is in treatment and thus it needs periodic maintenance and cleaning to assure no infection occurs. Doing this in the hospital can be expensive and bothersome to the patient’s family; doing it in the home is preferable. To facilitate this, the hospital offers training to each caregiver, and I recently took that training, which was somewhat limited. Although they offered a 2-hour lecture with a DVD and some sample equipment, it was difficult to translate these tasks to reality. After training, the caregiver must take a test and demonstrate to a nurse his skills. For me (and probably for most) this turned out to be half proving myself and half learning) more thoroughly. But I was approved for the job and given a large sack of cleaning kits, alcohol, iodine, pads, etc. It’s a little intimidating to do this, but each time I do it I gain more self confidence. And I also learned something from this assignment. There’s a new level of trust that’s going on here between spouses. The caregiver knows the patient needs it, and the patient, whether comfortable or not, becomes submissive to the caregiver for one small moment. Of course, a similar trust occurs when the any caregiver shaves or cleans the patient or helps them in and out of bed. But this particular activity involves a high level of accuracy; there’s a risk if it’s not done correctly, and this heightens the stress built into this trust.

Item 5. MEALS ON WHEELS REVISED

There’s a custom in our domain of workmates and friends. It involves having people make meals and deliver them to a sick or injured member of the group. Thus, when someone learns that a member of the network is in need, they offer to either cook or purchase food and then deliver some meals to help not only the victim but the spouse/caregiver too. Marilyn has organized this process through an on-line tool that allows others to sign up, telling if they wish to bring dinner over on a given day. This computerized approach helps prevent doubling up of deliveries. (Though, interestingly, we have a neighbor who knows nothing about the electronic list, so she just shows up on any random night and knocks on the door with a pot of soup or a dish of just-made lasagna. We graciously thank her and then put it in the freezer for another night. It’s just as needed.) Some people bring the food, chat a little, and then leave. Others sit down and join us for the dinner. Either way is fine. We have already enjoyed such dinners from people we know, and more are planned in the coming months. In our situation, chemo is given about the first 3 days of every 28-day period. It’s during that critical first week that we are under the most pressure—full days spent sitting in a hospital and waiting, walking to the next venue, driving from work to clinic and back. When the day’s over you’re tired and in no shape to cook. That’s when these services really pay off. I don’t know why, but I often have a funny feeling in receiving this service. I’m used to eating food that we cook, is cooked by a restaurant, or by someone we know who regularly has parties and dinners. But this is different. First, it’s from someone who seldom cooks for me. Secondly I’m receiving this not in the usual atmosphere of celebration, but rather from an atmosphere of sympathy. I appreciate the food and the time it saved me, but for some reason the food is hard to enjoy. What’s that all about? I’m open to any comments on this.

Item 4. SURVIVING DAY TO DAY

Marilyn and I normally share cooking, she cooks 3 nights a week and I cook four. During the months of receiving chemo this will change--but we don't know how. Planning for anything is not very easy during this time. I'm guessing supper will involve Marilyn’s will cooking whenever she feels like it (but less than 4 nights a week), and me cooking whenever it needs to be done. I figure that Marilyn will either: (1.) eat a regular meal, (2.) eat small portions of a regular meal, or (3.) eat snacks. Of course there's a cast of generous friends waiting in the wings who are ready to buy or make meals and deliver them to the house. We really can't give a hint to these folks as to when or how often we need this service. It will take a few weeks of experience before we get the hang of it. In talking to other caregivers I've recently met, it seems that in general they run everything. Either their patient has a more disabling type cancer or the duration is much longer than ours. These caregivers often arrange visitors to come, suggest small outings, and other such things. Marilyn, on the other hand, thinks up a lot of these things ahead of time, which for me is a blessing. A blessing not only in having Marilyn as a patient but also in dealing with a form of cancer that is more manageable.

Item 3. HELP FOR CARETAKERS SESSION

I attended an hour session on offered by the MDA Learning Center called “Caregivers—I’ve Got Feelings Too!”. I arrive at 1PM; there were 6 other people with me, 5 men and 1 woman, all caregivers for cancer patients, usually their spouses. I later found out that the age of time married was from 7 years to 43 years and length of time with cancer was high as four years. I sat down at a table with the others. Assuming that this was a class that provided tips on being a good caretaker, I put my pen and notepad on the table. The facilitator said to me, “Put that away, it might make people intimidated and afraid of being open in our discussion. As the meeting proceeded began to realize that this wasn’t about learning at all; it was about sharing. As the meeting began, he facilitator said: “Let’s go around the room and see how things are going. I have never heard such sad stories. They dealt with the struggles they had in pleasing the patient, losing their confidence that they were effective, being told by the patient to go away, and other issues. Note that all of these people were caring for spouses. The types of cancer were of the worst including patients who could no longer be helped and cases where cancer had spread to other organs. Most were somewhat fed up with the stress and yet simultaneously were ready to continue on. I was the last to answer the question, and I told them I was overwhelmed with what I had just heard; the struggle, the courage, the love. Marilyn and I had not really begun yet, but I had some remarks to make. The next questions were “How has cancer affected your marriage?” and “Name your biggest strength.” Needless to say, in protecting peoples’ privacy, I don’t think it would be appropriate for me to publish any of the meeting’s content. But let me summarize and express my feelings. Overall, there was generally an attitude of acceptance. They had said “I’ve been rejected, my community thinks I’m crazy for paying the money and coming here; ‘he’s just going to die anyway’.” Another says “I’ve tried everything, brought in every kind of specialist, and none of it works.” Yet they each felt that the work that he/she was doing was well worth doing and was ready to keep doing it. Doctors have told us that type of lymphoma Marilyn has can easily lead to remission in a few months and doesn’t require the invasive surgical procedures that other cancers do, that folks around the table had experienced. For this I am grateful. And yet my attendance at these meetings makes perfect sense; it’s very enriching and moving. There is much for me to learn, if nothing more than compassion from some real heroes. These sessions are offered every week and one can return any time, which I’m planning on doing.

Item 2: PLANNED TREATMENT

Cancer in general is treated in several ways, such as surgery, chemotherapy, and radiation to name a few. Lymphomas are best treated by chemotherapy. There are two possible chemotherapy routes types of chemical recipes) for treating this specific lymphoma: the conventional (“CHOP”) formula and the trial routine (“RFND”). Note that the four-letter acronym represents the four chemicals used in each chemo recipe. We have at this time chosen the trial approach. Administering a trial treatment means the use of new experimental chemicals that are being tested. In this case, the particular RFND formula we are using has been used by patients for five years. One of the advantages of this formula is (1.) that it contains a medicine, Zevalin, which adds strength at destroying the cancer and (2.) that a good portion of the cost of the two medicines, Zevalin and Riluxan, is taken care of by the trial sponsor. Most of the chemicals will be administered every month, 4 continuous days the first month and three continuous days the other three months. Treatment from these first four months most of the time provides the R, F, N, and D chemicals. Then a final kick after those four weeks is the major part of the trial drug Zevalin. It is an orally-administered pill that that is trained to follow the Riluxan chemical, which in turn is trained to follow the B-cells (which are carrying the lymphoma). It provides assurance that the lymphoma stays away for some time.

Item 1: FINDINGS FROM THE TESTS

In the week of Feb. 16 2009 tests were performed at MDA to develop a comprehensive picture of Marilyn’s condition. In general there were clearly visible enlargements in the lymph nodes of the chest and abdominal areas and of the spleen. This confirmed previous exams by Dr. Berneker’s office. One of the key goals of this MDA examination was to determine the exact type of lymphoma she had; that type turned out to be Follicular Lymphoma Grade 1. Why was this important to know? First let’s look at the term “Grade 1.” Let’s compare it to painting. When you paint with a spray can, if you hold the can close to the target, you get dense coverage; far away, and you get sparse coverage. Similarly, when you look at this tissue in a microscope, these lymphoma cells are very sparse or scattered. This type of lymphoma is known to be slow-growing and often inactive and grows very slowly. When it is in this inactive state it is basically harmless. (Interestingly, the doctor said that this could have been sitting dormant in her body for many months or even years.) Only when it begins to increase in density is it dangerous. Thus, after it is treated the lymphoma will return to a dormant stage and she will be in remission. When in remission she’ll be her old healthy self ready to lead a normal life; but the lymphoma will always be present though harmless for perhaps years. After that, regular checkups will be able to find any recurrence which can be fixed quickly and without drastic measures. The chemical that treat this condition have a very good track record; remission can be reached after about four months of treatment.

Coments and Responses

(This area is a placeholder for holding comments and responses.)

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

Simply click on “comments” under any log entry. Click the pull down menu to the right of “Comment As:”, chose either (1).“Anonymous” or (2). click “Name/URL”. With NameURL, suppose your address was "billjones@yahoo.com." Then you you put "billjones"in Name box, and you put "yahoo.com" in the URL box).

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.