Tom - Tom Terrific

April 25, 2010:

I am half way through my radiation treatments and so far so good. Thanks to all those who have helped in giving me rides to the Cancer Clinic in South Sacramento and to those who have brought dinners by the house, and to everyone for all the moral, spiritual and just the positive good feelings kind of support I and my family have received. Believe me, it really does help.

So, let me bring you all up-to-date on the latest news. I had been accepted into a Clinical Trial Program through Kaiser. I had up until this week to make my final decision about participating in it, and based on my research, second opinion from UCSF Dr. Butowski and a cautious but common sense approach, I decided not to participate. However, as you all know, or should know by now, my prognosis is not exactly uplifting. In fact it is pretty much a statistical given that I will not be around, in the earthly sense, beyond a year or two. So part of my decision had to deal with how much good could I do for others. Could my participation lead to advances that may someday lead to better treatments, more effective medications and perhaps an actual cure for this type of cancer. Weigh all that against my selfish desire to avoid the slim possibility of suffering the side effect that could occur should I partake in the Clinical Trial and you see the dilemma I had to deal with.

I guess I should briefly try and explain the Clinical Trial. First I would continue with the radiation and Chemo using "Tamador". But, starting next week I would then be given an additional drug called "Avastin". This drug has already been approved by the FDA as a second line defense (if the tumor recurs) but now it is being tested for its efficacy as a first line drug treatment to be added to the usual "Tamador". Here is what Avastin does: It reduces the production of capillaries. A glioblastoma tumor creates capillaries in order to feed on the blood produced. So, by slowing the production of this process the tumor is deprived of its source of energy/food and will not grow. There are several problems. First the effectiveness of this treatment for glioblastomas is not that great. Second, since you have fewer blood vessels through which the same amount of blood must travel, your blood pressure must be carefully monitored. And perhaps of most significance to me, there is a risk of hemorrhaging in the brain. And, should I begin to hemorrhage, I would die. No ifs ands or buts. There is nothing anyone could do; I would die. Dr. Butowski was adamant in his opposition to my participation in this trial. Based on his assessment of my MRIs and medical records, his position was that I was not likely to develop a tumor immediately and could always use the Avastin if and when one developed later, but why take the risk, however low it may be, of hemorrhaging now. Then there was the double blind tests involved where 50% of those in the trial would receive a placebo. He felt this was not right and close to unethical and told us that UCSF had stopped participating in these types of trials quite a few years ago. I wanted out of the Clinical Trial. I wanted to survive, and who knows, I might be one of those rare individuals who actually does survive for 5, 10, 15 or more years. But, as I mentioned above, I was also in a unique position; I was given this disease that few others receive; It is almost always fatal and I could use my condition to be of help to those in the future who unfortunately develop this form of cancer. What to do?

Along comes "NOVOCURE". I found this on the internet. (They tell us not to use the internet, probably because it would scare us.) So, let me describe it to you all as I did to my oncologist. It is a device that consists of something resembling a bathing cap. There are numerous wires that are attached to, I believe four pads, then the pads are attached to the scalp and kept in place by the cap. The wires lead to a battery that I will carry in either a purse or in a backpack. An electrical charge is sent through the wires, creating some sort of low voltage electrical force field that identifies only cancer cells and then Zaps them, dead. This device is in clinical trials and seems to have a very high success rate. (Now the Tom Terrific Cartoon above makes sense, right?)

My oncologist rolled his eyes, I think said something about tinfoil hats and that it could not be in Phase III Clinical Trials because that is the last phase before approval by the FDA and it involves large groups and, and, and it just couldn't be. I asked him please go onto the internet and look up NovoCure and see if I'm being misled somehow. The next week, I asked him if he looked it up. His response was that he, not I, was wrong. I gained an enormous amount of respect for him at this point. He admitted he was wrong, but he also admitted he was ignorant of an advanced procedure in his field of medicine. And that it had sparked a curiosity in him about this device. Not only was it in a Phase III Clinical Trial, but the doctors who were involved were all legit, on top of their analytical research, were not trying to deceive anyone and the project was being backed by some of the largest and most prominent drug and cancer research companies around. I immediately went looking for the trials. Supposedly, as with anything successful in cancer research, the trials were only being conducted in Europe. Nora and I discussed this and we figured we would, somehow, find a way to get there. But, I later found out that Phase III trials were going to be starting in the United States in April of this year. I went to "NovoCureTrials" on the internet and located the two hospitals in California that would be participating; University of Southern California and The University of California San Diego. (I know, I know, these are just low budget unknown medical clinics just a notch up from that place just around the corner in Tijuana.) I, as quickly as possible, sent e-mails off to these folks, who each replied within a matter of minutes. As it now stands, I am registering as a patient in one of the two hospitals and will, upon completion of my radiation, travel down to southern California for a week of testing and training and then I'll come back and administer the apparatus myself. I will have to go back each month for additional testing and monitoring and will do this for the next two years. This is so much better than taking a drug that may kill me. And, I still may be helping people in the future; Most of all, this may help me to be around to see my grandkids grow up, see my children through college and spend at least a few more years with Nora. Will it work? The success rate is very promising. Side effects? Can't think of any, other than some skin irritation. Will I look funny? Only to the ignorant.

Well, that is the update. I am determined as ever to survive and I look forward to working with this NovoCure device. I WILL BEAT THIS. Lenny

UPDATE APRIL 17

Guatemala: Nora eating on the porch of the Hotel; The next picture is of our room as seen from where Nora is; The bottom one is the entrance to "Blind Lemon's" a restaurant.


I really wanted to buy a Hotel in San Marcos and may still do so.

April 17, 2010

I last reported on April 9, so I'll try to fill in all that's been going on since then. As you know, I receive radiation monday through friday and I take chemo everyday. Chemo, for me, consists of just a couple of pills. Although they are deadly poisonous, it is not the same as receiving chemo drugs intravenously. My pills come in little bottles and are in biohazard bags that per instructions only I can handle. A bit scary. Combined with the radiation I distinctly get the impression someone is trying to kill me. Actually, in the words of my oncologist, they are trying to kill me but pulling back just a hair at the last moment. For instance, I was a bit concerned about receiving CT Scans every couple of weeks. Ct Scans can actually cause cancer and no one wants to have too many of these. I asked my radio-oncologist about this and his response was, " Look, a CT Scan gives you 2 units of radiation. We are subjecting your brain to about 200 units of radiation every day. I don't think I'd be too concerned about the effects of the CT Scan." Whoa, that definitely put me at ease.

I have been receiving rides to the South Sac Cancer Center (where I get my treatment) from pretty much a different person every day. I still am in awe of the number of volunteers who have come to our aid, and mind you it is not only my aid but it really helps Nora, as well. In any event, because of this I have had the most varied of conversations. Ranging from esoteric discussions of choral music, to the spiritual to learning about neighborhood issues. I love it.

Then, at the Center, I have made friends with about four individuals who are also cancer patients. Two of whom arrive and receive treatment before me, and one after. It is quite amazing, and I know a bit of a cliche, how we bond over our similar situations. We are all suffering from different forms of cancer, and I am by far the youngest of the group and afflicted with the most severe form of cancer, but it hardly matters. We are all in it together. Rooting for each other and sharing, in the few minutes we are able to discuss our lives and family (obviously that which is most important to any of us) before going into the radiation room, the softer and more sincere side of our personalities. The other day, John N. (I don't know if he'd want for me to disclose his name) and I spoke about our conditions. He had a form of throat cancer, was about in his early seventies, lanky, casual in jeans and appeared a person easily at home in the country mending fences or cutting lumber or engaging in some type of physical outdoor activity. We spoke softly and slow. Perhaps due to his condition, but I'm more certain it was due to the reverence we had each recently acquired and now felt toward life. The precarious and fickle existence with which we occupy our place in this world. How fortunate we really are and how quickly it can be altered. When I got up to go in and receive my treatment, John reached over with one hand outstretched to shake my hand, and with a calm, warm and friendly voice, simply said, "Good luck with your treatment." I wish I could express in writing how those words, simple as they are, were felt. How he looked into my eyes; How his hand not only touched mine, but joined it, even for the briefest of moments, we understood one another, way beyond our intellectual abilities and for that momentary respite in our daily routines we shared in a fellowship of desire, an alliance that we would each, separately and together, want for one another to beat this thing called cancer. Don't worry, I haven't found Jesus or anything like that, just a lot of time available to listen and think about things.

PURPLE HAZE: I mentioned in an earlier blog the "purple light" I experienced when they radiated my brain. It happened again on monday. I asked what it was about and found out that it is often reported when the radiation occurs at the same time they take pictures of the brain. So, on monday they were taking pictures along with the radiation and I was treated to the flashes of purple lights flashing from the back of the head but originating from somewhere within the brain and moving quickly toward the front. Hey, it's the small things get my attention these days.

Feeling Good: I am grateful for the fact that for the time being I'm not experiencing any ill effects from the radiation or the chemotherapy. I was told that by the end of this week I'd probably start experiencing fatigue, but so far so good. In fact I pretty much feel as I did on February 22 (day before the accident). However, I know my immune system is taking a hit so I'm being cautious about being around people, especially the little ones, what I eat and taking precautions not to be infected with unnecessary germs. How can you totally avoid exposure to the world of microbes? You can't, so I just do the best I can.

I have a lot of people in my corner, some pray, some are sending positive energy, others just thinking about me. I appreciate every thought and every effort and, I WILL BEAT THIS. Lenny

Scenes from Lake Atitlan and the Village of San Marcos, Guatemala.

April 9, 2010

Today marks my one week of radiation and chemotherapy treatment. So far, I have not felt any side effects or shown any in the tests they administer on a regular basis. However, I was told yesterday that I could expect some by the end of next week. The effects should manifest in the form of fatigue, dry skin and some hair loss in specific spots where the radiation is directed. We'll see.

I am having an interesting time riding with different people to the Cancer Center. Each day the conversation changes from discussions of Art, Music and the local political scene (Jeff Hudson critic for NPR) to raising children and the effects of my cancer on family life (Alice Provost - Family Therapist for UCD). The trip, to and from the Cancer Center, takes about an hour, so there is just about enough time to have a nice conversation. The people employed at the Center are also becoming a bit like an extended family that shares in a rather personal and somewhat tragic occurrence in my life. They are very patient and caring in the way they deal with all of us that come to them for treatment. All in all it turns out to be not only interesting but a pleasant experience, as well.

Today, I'm going for a bike ride (bicycle not motorcycle) around Davis to do a bit of shopping. I need the exercises, too. Although I have not had any seizures since the accident on the 23rd of February, neither I nor the DMV feels comfortable with me being behind the wheel of a car. My condition may cause some of the folks I rely on for transportation to rearrange their schedules, but I don't believe it has been a major problem, yet. So my desire (or lack there of) to drive is not something I need to even consider at this time.

Last night Linda Wayne made our dinner for us. It was a beautiful feast: chicken breast with dipping sauce, asparagus spears, risotto, loaf bread and a desert of strawberries, spongecake and yogurt (all, or nearly all, organic, too). It may sound as if I'm taking advantage of this generosity, but the truth is, we are exhausted from all the requirements placed on us by the various hospitals, doctors and insurance companies. Nora, more so than I, has taken on the job of handling the day to day dealings with the numerous agencies whether they be medical or insurance or something else. My job; The one I have assigned to myself, is to survive. I appreciate, more than I can or will ever be able to express, the support I've received from friends and family, but especially from Nora. Oh, we still get into arguments, but they do resolve much quicker than ever before, and I know that she is about run ragged from all this crap. And though Nora is in great shape, a dinner prepared by a friend just once in a while is very, very much appreciated. Oh, I almost forgot about the fantastic chicken soup that Sharon and Mark Strauss brought us about a week ago. Nora and I had gone to an afternoon doctor's appointment and when we came back that evening, there it was, a pot of delicious chicken soup. Thank you. I will repay you, as I will everyone who has reached out a helping hand, in about 5 to 10 years from now. Because, I WILL BEST THIS.

Checkout the "Your Opinion" site. It is my rambling thoughts about what I see and think about during the day. Let me hear from you, too.

Lenny

The Fight Goes On

(I should edit these blogs, but I'm sure you'll forgive my errors)

April 6, 2010: I had my first treatment yesterday and all went very well. I didn't experience any ill effects, but then it was only the first day of a six week series of treatments. I'm taking so many types of medication, each with it's own regimen as far as at what time and on what day it must be taken that we had to create a color coded calendar just to keep track of them. The heavy duty one, though, is something called "Tamador". It comes in a bio-hazard bag and I'm not suppose to let anyone touch it other than me. Sort of scary, considering I've always, even in my younger days, been really careful about the purity of whatever I ingested. I always knew the source, the potency, and made sure there were no additives. I guess the same can be said about Tamador, but it is definitely a high dose of poison designed to cumulatively build up and specifically to attack and kill cells. For the present time, we are all doing just fine.

The photos are of me with a Giant Card I received from the Criminal Division. I really appreciate all the love and thoughts coming my way. I will need it and I will never ever forget it, because with that kind of support I WILL BEAT THIS. I have received so many cards and letters and visits and e-mails I can't believe so many people care so much about me. Thank you, all.

I do have one request, however, and that is for the e-mail addresses of those in the courts (if they want my blog). So, if anyone out there thinks of it, ask someone in the clerk's office, the Sheriff's Dept., Judge's Chambers, etc., for their e-mail address and send them to me in the comments section or by e-mail. I would appreciate it.

Hopefully, no one reading this will ever have to experience what I'm going through, so let me describe what radiation is like. I went in a couple of weeks ago and the made a map of my brain using a CT Scanner. It took about 45 minutes. They also made a mask used to hold my head in place for each successive treatment. The mask is a piece of wet cloth mesh that they stretch over the face and it quickly hardens into a plastic. So yesterday, the mask was placed over my face, attached to the table I was lying on and then the process began. There was a lot of humming sounds, sounds of fans blowing and a very distinctive "buzzing" sound that seemed to travel from front to back, then minutes later from side to side, and in between each session of these sound effects the table I was lying on would mechanically move into a different position, then the sound effects would begin again. Along with the "buzzing" sound, which I later was informed was the radiation part of the process, I'd experience seeing a purple light flash through, not my eyes, but through my brain. Really weird experience. I could tell it was coming from somewhere in the brain and not my eyes because sometimes it would initiate in the back of my head and just be a flash moving forward. This purple light happened about 50% of the times when the "buzzing" sound occurred. Then it was over.

Today I go in, but from now on the sessions are suppose to take only about 15 minutes. It can be a depressing place, to see so many people in different stages of treatment, some looking gaunt, dragging their feet, heads hung down and a sense of fear pervades throughout the complex. On the other hand, I see us as a group of comrades, each in differing stages of treatment that may cause us to look like a defeated band of desperate patients seeking a miracle, where if truth be told, we are in this battle to win. How one looks or shuffles about at any given moment in time is not the standard by which to judge us, let's see how we look in five years. This is truly a battle and we are filled with poisons and being shot with beams of radiation that could, and is designed to, nearly kill us. The result, however, is that the cancer will eventually lose. So, these depressing figures that shuffle around in silence are really my friends, compatriots in this contest of wills. Well, my will to live is far greater than any cancer cells' desire to wreak havoc on my body. I WILL BEAT THIS. Lenny