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.

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