YES VIRGINIA ....

Great News - I had my MRI yesterday (an hour and a half) and the Doctor called this morning to inform me that he read the image and has concluded, "the tumor has reduced a good amount" so the Avastin seems to be working and we should cancel the scheduled surgery.

I couldn't ask for a better or more wonderful Christmas present. Truly, this is all I wanted to hear. Now, I have more time to spend with my family, and especially Nora. She has taken such good care of me this past year. My Christmas present to her will simply be, being around as long as possible. Love to you all and best wishes. Lenny.

I WILL BEAT THIS

Still Here

Whoa - I went back and looked at my last entry, June 10, 2010. Whew, quite awhile ago I must say. A lot has happened, and yet not so much as you might think. My, our, lives are pretty filled with my illness and all the surrounding hoopla it entails. In July we traveled back and forth to USC and Kaiser; the same for August, September, October and November. We also managed to file for my driver's license to be renewed and kept up the MRI struggle. Who will pay for it and the never ending battles with the insurance companies.

For instance, Kaiser requires me to have an MRI every two months. The NovoCure study also requires me to have an MRI every two months. Simple, right, have my medical insurance cover the cost. Aha, not so simple. It seems that USC, because of their study, requires the MRI they need be performed at USC. OK. I contacted Kaiser and requested that my insurance cover the cost of the MRI. This took a long while, several dozen telephone calls and a mini telephone hearing. Just to be told that Kaiser would not cover the cost of a procedure they could perform at their own hospital. This went on for several weeks and eventually it was resolved by having Kaiser recalibrate their machine to the USC required specs. So, I'm now getting all my MRIs done at Kaiser.

Oh, and can you believe it, I am actually being sued for the damage I caused to the telephone pole and the repair time it took to fix it. The total was about $9,000.00. But what do you think my insurance company told me when they got the claim? "Well, we are expecting to deny the claim. You didn't know you had a brain tumor, did you? Where's the negligence?"

Of course there was no negligence, but my position is very simple, "I didn't pay insurance for all these years just to have lawyers fight over a pittance of $9,000.00 and then sock it to their employers for the attorney's fees. And, although I have nothing against attorneys, some are my best friends, it does seem a bit silly to be paying them for such frivolous shit as this. And that is whether they are on the staff hourly or if they get paid when they win. In any case, it is just another example of why our insurance rates are so high. Thank the Republicans for that one.

In the mean time, we have been getting out and doing as much as we can. We spent two weekends in Inverness at Nora's mom's cabin. The first while she was there and the second just the two of us. That was beautiful.

We went to Ashland for a week and saw several plays, ate and walked around. I also picked up an 8 string Ukulele. Actually it was a birthday gift from Al and Pam.

Then, of course, we can't forget the week we spent in Hawaii. We took Nate there to enroll him at the University of Hawaii. Again, we did a lot of eating, walking, driving around the island and sitting on the beaches and don't think we didn't go swimming. It seems that I am allowed to add up the hours for how long I can go without the NovoCure device attached. So, if the desired amount of time is 85% and that means I have about 3.4 hours per day to add up. So, if my actual time is about 95% that means I am getting to add up 2.8 hours for every day that I have the device on, which means that if I had it on for 3 months, 30 X 2.8 = 84 hours of off time while we were in Hawaii. And, I definitely took advantage of such time.

We also went skydiving! What a rush, but nevertheless, it was not the type of rush you, who have never done it before, would think. I promised Nate that on his 18th birthday I would go skydiving with him. Well, his 18th birthday was October 17th and he, I and 7 of his friends went to the Yolo County airport and in three different trips we all jumped out of a plane. Let me explain the divergence with the commonly held belief of gripping fear as one jumps from a perfectly good airplane. As I sat on the ledge of the open doorway, with the wing on my right side and the spinning prop just beyond it, I only had a few seconds to (not at all long enough) take in the magnificence of the view. Below me stretched out as far as I could see was this checker board of farm fields. Each square or something approximating a square differed in color from dark green, shades of yellow, to rust, to grey and various tints of blue. You don't have the feeling like you're moving as fast as you really are when all of a sudden you start to fall. ONE HUNDRED AND THIRTY MILES AN HOUR down toward those patches of multi-colored squares. But, the amazing thing is, you don't feel the speed. Even though we did it on a bad weather day, little ice pellets hitting us in the face as we zoomed through them, the rate of our fall just seemed to be so natural and so simple and amazingly peaceful. Not until we were about a couple of hundred feet from our landing did I realize just how fast we were moving, then the canopy pulled up and we came to a near perfect landing. I will go again!

I managed to get my license reactivated, so, although I don't have auto insurance at least I can drive legally in an emergency. I can't believe how debilitating it is to be relying on others for transportation. It just started to wear on me night and day. Although it wasn't easy, the bureaucracy was so incredibly stifling, nonsensical and boorish, but nevertheless, through perseverance and a lot of sweet talking I got it accomplished.

We had Thanksgiving Dinner at our neighbor's, the Provost's home, then again at my brother's the next day and then on Saturday we had still another dinner at Al and Pam's ranch. Thanksgiving was well covered.

Now, we are in a situation where I disagree with my doctors. It seems that one of my MRIs showed a bit of new growth in the tumor area. This could be tumor or it could be dead tissue. In either case, it is not good. We had several MRIs and MRSs to try and explain the discrepancy between what I saw in the images and what the doctors saw in the images. I don't want to sound as if I know more about these matters than the doctors, but the one thing I do have going for me is an incredible sense of why people do what they do, see what they see and say what they say. For instance, in this case the MRI conducted in early September was read by the person in the MRI room and it was written in his report that the tumor showed possible new growth that was consistent with new tumor growth, but that growth of necrotic tissue can't be ruled out. From that point on everyone simply reported what the first person wrote in the report and the necrotic suggestion and especially that part where it said "possible new growth" sort of dwindled away until we were dealing with scheduling surgery. OK, I wanted more clarification. My surgeon requested an MRS to be performed. This would be a 90 minute procedure, like the MRI, only it produces a spectrograph, which is good for comparing types of tissue but not size. The MRI is good for size but not discerning between tissue types. The day after the test my surgeon called and said it showed the tissue to be cancerous. Not good. That was on a Wednesday. Then on Friday he called back and said a panel of three experts examined the images produced by the MRS and concluded that it was more consistent with necrotic tissue growth. Good news!

Nevertheless, we had so many experts saying that they saw some growth that surgery seemed imminent. Of course, they won't tell you unless you ask the exact question in just the right way, but surgery is not the best of things to simply jump into. Each time they open up my skull and remove a part of my brain, there is always the likelihood of me not coming out of the surgery as well as I did this time. It would be like starting over again. Remember, the doctor told me that in all likelihood I would lose some speech, memory, use of my limbs or even sight. He then told Nora not to expect me to be the same as I was before the accident and that I probably would be confined to the hospital for a long period of time and might even die. Now, unless you knew to ask the right question, you might go into this thing with the belief that you would come out the same as you did the first time. Wrong. Each time is like starting over, again.

What all this meant was that I had to try and avoid surgery until I was certain it was necessary. See, I believe that the MRI performed in June, to which they compared the September one with, was always a bit flawed. Then the subsequent ones were newly enhanced because of the new calibrations (USC requirements). The amount of growth, or thickening as my surgeon says, is rather minuscule in degree. So, there are several possibilities. One is that it was the enhanced version that caused the difference; two is that it is a picture taken at just a split difference in my brain; three is that it doesn't seem to be effecting me at this moment so why go in to resect?

I have chosen to wait, to take the Avastin and see if it will have an affect on the tumor/necrotic tissue growth. I also asked the nurse administering the Avastin, on a whim, if she had administered Avastin very often and she said yes, "It's one of the main drugs available." I then asked her how often and she could not tell me, but said she had worked at Kaiser for about 20 years, that Avastin came on to the market about 6 years ago and that although they have to tell people that one of the possible side effects is hemorrhaging of the brain. She added that she had experience with only one case and it turned out not to be caused by the Avastin. However, if I started to hemorrhage in the brain, the prognosis would not be good, in fact it would probably be death.

As of today, I have taken two Avastin infusions, they take about 30 minutes and no side effects other than the possibility of the hemorrhaging. Now, I am waiting for my next MRI, which will be on the 15th of December. From there we will know, or be able to decide whether we schedule surgery or if the growth has been checked.

Oh, and yes I am on a regimen of chemotherapy. Twenty-three days off and five on. It consists of taking two pills each day of the five days, and sometimes it makes me quite ill to my stomach for a few days after, and creates a bit of lethargy that seems to linger for a few days. Other than that, it doesn't have any real side effects, but believe me, it is poison and you wouldn't want to be taking it for the long term. I have now been on it for about 10 months.

Well, that should bring us up to date. I need to get this posted, it is getting a bit late. I'll try and write more frequently, I promise.

Lenny I WILL BEAT THIS

USC

June 10, 2010:

Just a short entry so as to keep everyone up-to-date. Yesterday I flew from Sacramento to Burbank and from there to USC. I spent the day filing out papers, giving blood samples, taking mental health tests, and meeting with Doctor Thomas Chen, his staff, and being examined and finally having an MRI administered. I flew home about six in the evening. This morning I was told by a member of Dr. Chen's staff that he examined the MRI scans and saw NO EVIDENCE OF NEW TUMOR GROWTH. It may not sound like much, but for me it is everything. It is the difference, at this point in time between the very essence of hope and despair. I'm serious, it allows for just enough breathing room to sit back, take a deep breath and re-examine the situation. I feel as though we have been flying by the seats of our pants since February 23rd, nothing letting up, not knowing what was going to hit us next, trying to educate ourselves as quickly as possible, make life and death decisions on the spot and all the while feeling as though I'm more exhausted than I've ever felt before. Only this time, I can't give up, call time out, or ask for a continuance, it's always life or death and now.

ALERT - I just got a call from USC and was told that I will be receiving the device. I was randomized and it turns out I was one of the two of three who got lucky. What a sunny day.

I WILL BEAT THIS. Lenny

Davis Enterprise

The following is an article in the Davis

Enterprise to run in tomorrow's paper.

After medical crisis, a journey begins

By Jeff Hudson | Enterprise staff writer | June 07, 2010 07:54

Lenny Oldwin, 56, of Davis is undergoing chemotherapy and radiation treatment for glioblastoma, an aggressive form of brain cancer, while he waits to see whether he'll be accepted into a trial program for a new form of treatment. Oldwin is blogging about his health care journey. (Wayne Tilcock/Enterprise photo)

Lenny Oldwin's personal encounter with brain cancer began with a horrific freeway accident on a rainy February day.

Oldwin, an attorney, had been working at his office in Fairfield on Feb. 23. He was interviewing candidates for an office position, and - looking back - he recalls 'I wasn't acting right.' He asked some questions that weren't entirely on the mark, and sometimes experienced a sense of anxiety. He remembers looking at his computer screen, and thinking that the screen was 'going up and down, big and small.

'And then ... I got in my car (to head back to Davis), and after that I don't remember anything.'

He drove about 15 miles, and then the accident occurred, between Fairfield and Vacaville.

'The accident report says I was in the lane next to the fast lane, when I started to go over into the fast lane. The car that was in the fast lane had to speed up so I didn't hit him. He told the officer that even looking at me in his rear-view mirror during a downpour, he could see that something was wrong with me.'

Oldwin's SUV went through the fast lane and hit a metal divider that separates the westbound and eastbound traffic, taking out a 25- to 30-foot section. His SUV then made a right angle and sailed through four lanes of oncoming traffic, went down a small ravine, through a chain-link fence, across a frontage road, cut a telephone pole in half, and then knocked down another chain-link fence.

Miraculously, Oldwin survived, and while he was in some pain, he was able to move his arms and legs, and even walk a little bit.

An ambulance took him to the UC Davis Medical Center in Sacramento.

'They did an MRI, and noticed a mass in my brain,' Oldwin said. 'Fortunately, the mass was in a good spot, a quarter-inch to half an inch from the top of the brain.' In other words, the doctors felt they could remove it.

With brain surgery, it's never easy to say with certainty how things will go. Wife Nora Oldwin said the doctors warned her 'he might not come out of surgery alive, or he might be blind, or might be paralyzed, or unable to speak.'

The operation - scheduled for four hours or longer - was over in just 2 1/2 hours. And as Oldwin recovered, he felt pretty much like his usual self.

'Lenny was really lucky,' Nora said. 'He didn't hit anybody in the accident, he wasn't badly hurt, he came through the surgery basically OK.'

Tests determined that the tumor was a glioblastoma, an aggressive form of brain cancer.

Oldwin, 56, started radiation and chemotherapy, 'which almost everyone (with the disease) does.' He considered taking Avastin, a pharmaceutical that is sometimes described as 'tumor-starving,' but one that can also produce serious - and sometimes fatal - side-effects. Oldwin decided it was not for him.

And Oldwin started researching glioblastoma, looking for options. He found something called Novocure, a new treatment that is going into Phase III trials, the last phase before Food and Drug Administration approval.

Novocure uses a lightweight electronic device that is connected by insulated wires to electrodes placed on the shaved scalp. The electrodes resemble bandages with wires attached. The patient wears the device continuously, and during treatment is able to maintain normal daily activity.

Oldwin asked his doctor about Novocure, 'and he kind of rolled his eyes,' Oldwin recalled. But the doctor checked out the suggestion anyway, and discovered that 'according to the early studies, it has a high success rate,' Oldwin said. 'He was surprised he hadn't heard of it.'

A bit more research found that Novocure trials in the United States would start in April. Oldwin will be evaluated as a possible participant sometime this week.

The freeway accident, the hospitalization and the cancer treatments have generated a mind-numbing volume of paperwork, which is largely handled by Nora.

'I've turned over the administrative part to her,' Oldwin said. 'My functioning is on survival, that's all I want to focus on.'

Neighbor Eileen Jaffe organized a team of volunteers to drive Oldwin to his radiation treatments in Sacramento, and bring meals to the Oldwin home periodically.

'I didn't realize how many people cared,' Oldwin said.

And since he doesn't always have the energy to talk with everyone who wants to wish him a full recovery, Oldwin started a blog.

'It's really just to keep people informed about what I'm doing and how I'm progressing,' he said. 'But I also want to comment on political things. For instance, I write about health care, which is important to me. If I had not had insurance, what would have happened? How long would it have taken them to work on me, and what would have been the bill? And who would have paid it?

'As it is, having insurance can be a nightmare. But without insurance, it would have been much worse.'

What will come next? Only time will tell whether Oldwin will get to participate in the Novocure trial - and whether it will help.

Oldwin is grateful to the many friends and neighbors who have rallied to support him and his family, and he is particularly thankful for his wife.

'Although we share our lives and agreed a long time ago that our bond was for better or worse, I don't think either of us contemplated something like brain cancer at age 56,' he said. I WILL BEAT THIS.

- Reach Jeff Hudson at jhudson@davisenterprise.net or (530) 747-8055. Comment on this story at www.davisenterprise.com

Follow him online

Lenny Oldwin is describing his experience with brain cancer in a blog called 'Lenny's Cafe,' at http://lennys-cafe.blogspot.com.

A sample from the May 23 posting, regarding the difficulty of being covered by one health care provider while needing services from another:

'Unfortunately, because we don't have universal health care, or as some would like to claim, socialized health care, (my upcoming) clinical trial requires that all subsequent MRIs be conducted at USC. Now, my insurance, Kaiser, also requires that I receive MRIs every two months, but they will only pay for them if done at a Kaiser facility.

'USC won't accept the Kaiser MRIs and Kaiser won't pay for the USC MRIs. They are quite expensive. So, I might fall victim to what's known as collateral damage. In other words, I might die because people in this great country of ours are so afraid of the term 'socialized' anything.

'In fact, as you can imagine, I have done a lot of research on the topic of cancer in recent times, and discovered that in all likelihood we actually would have discovered a cure for cancer if not for the likes of recalcitrant politicians and, I use the term loosely here, 'citizen/patriots' such as Glenn Beck, (Sean) Hannity and Rush Limbaugh. They have consistently argued against government involving itself in charities and spending the necessary funds to support research that undoubtedly would have led to a breakthrough cure.

'Of course, Beck earned $38 million last year; Hannity something similar and Limbaugh even more. (Limbaugh, by the way, was the one who claimed he received excellent medical care in Hawaii, without realizing Hawaii has a socialized health are system.) They could easily take care of themselves.'

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These photos were taken on my last day of treatment;

An X-ray usually subjects a person to about

2 rads of radiation; Each day for 6 weeks my

Brain was subjected to about 200 rads, just shy

of a lethal dose, still it did burn my scalp, I lost

my hair and who knows what else it did to me.

Nevertheless, I Thank You all at the Cancer Center

from the most sincere parts of my heart.

May 23, 2010 - It has been quite a while since I posted, I'm sorry about that, but the fatigue finally set in about the last week of my radiation and continues to plague me well after my final treatment (May14th). I am getting some energy back, but it is a slow go and I'm not sure if I need to battle the fatigue or let it run its course. My fear is that by the time the fatigue runs its course, I will not have much in the way of muscle and energy to know when it's over. Nevertheless, I'll figure it out.

As I said, my last day of radiation was May 14th. That was also the last day of this round of chemo. I get a 28 day break, then start up for 5 days, 28 off, so on and so on.

First, I want to thank all those who provided me transportation to and from the Cancer Clinic. I realize that it may not have been a lot for any of you to have made the contribution, but it really was a sacrifice no one had to make and in return it provided so much help to my family, especially Nora. To whom so much is owed. She wouldn't want me to say it like that, but it is true. Although we share our lives and agreed a long time ago that our bond was for better or worse, I don't think either of us contemplated something like Brain Cancer at age 56. And to make a bad situation even worse, the administrative nightmares involved with insurance, Social Security, Disability Payments, and even a former client that lacks the least bit of semblance of compassion, all of which has taken a toll on Nora. So, to all those who assisted in my transportation, Thank You. And, I'm not forgetting those who cooked and delivered meals to us either. I never had such a variety and such wonderfully tasting dinners. This was above and beyond the call, I Thank all of You.

Finally, there are those who sent cards, some are still coming in, and prayed for me, for my recovery, and for my family, I want to thank you. However, don't stop now, please. I will need all the help I can get and I don't care what the denomination, if any at all. When it comes down to it, prayers are silent, singular and personal, with no barriers of language , race, creed or culture. Positive energy is what I need. Thank you.

And, before I forget, thank you to the staff at the Cancer Center. You have all been fantastic. I actually began looking forward to going there for treatments. First, because I felt as though I was involved in doing something objectively and directly to fight this evil thing. But, I realized also that it was because you folks made it such a comforting and friendly place to go to, to have my brain shot with basically a lethal dose of radiation. Thank you, and a special thanks for taking the pictures for me.

So, on June 9th, I will be going to USC for the initial registration for the Clinical Trial of the NovoCure Device. Here's a good place to begin a prayer for me, since 1 in 3 will not receive the actual device, what say we pray that I'm one of the 2 that does. I will also be given an MRI on that date. This will be the first after my radiation treatment to see if it was effective, or how effective and will determine where they place the electrode sensors. Then on the 14th, since I will be one of the 2 that gets the device, I will go back down for a week during which they train me on how to shave my head, remove the device and replace it. After that, I will go back down either once a month or once every two months, I'm not clear on that part.

Unfortunately, because we don't have Universal Health Care, or as some would like to claim, Socialized Health Care, the Clinical Trial requires that all subsequent MRIs be conducted at USC. Now, my insurance, Kaiser, also requires that I receive MRIs every two months, but they will only pay for them if done at a Kaiser facility. USC won't accept the Kaiser MRIs and Kaiser won't pay for the USC MRIs. They are quite expensive. So, I might fall victim to what's known as collateral damage, in other words I might die because people in this great country of ours are so afraid of the term "Socialized" anything. In fact, as you can imagine, I have done a lot of research on the topic of Cancer in recent times, and discovered that in all likelihood we would actually have discovered a cure for Cancer if not for the likes of recalcitrant politicians and, I use the term loosely here, "citizen/patriots" such as Glenn Beck, Hannity and Rush Limbaugh. They have consistently argued against government involving itself in charities and spending the necessary funds to support research that would have undoubtedly led to a breakthrough cure. Of course, Beck earned $38 million last year; Hannity something similar and Limbaugh even more (Limbaugh, by the way, was the one who claimed he received excellent medical care in Hawaii, without realizing Hawaii has a Socialized HealthCare system). They could easily take care of themselves.

Before anyone begins to suggest that I might have brought this on myself by neglecting my health, smoking my pipe or what have you. Read up on the literature. The type of brain tumor I developed is not caused by anything but bad luck. People that don't smoke get it, people that do smoke get it; People that eat organic get it, and those that drink pesticides get it. It is simply a a cell gone bad for no other reason than shit happens. But if I can't find a way to cover the costs of the NovoCure Device, which may or may not work, and I still beat this, it will be of no help from those "super citizen patriots" who make millions from whipping up a frenzy of fear amongst those who benefit most by yelling "Socialism" every chance they get. What is wrong with socialized healthcare? What is wrong with having a cure for Cancer?

Enough of my ranting. I Will Beat This.

(Nora just proofread this for me and she says I sounded unusually angry; Well, I am. But for ignorance we could have had a cure for cancer by now; but for the fear fomented by the greedy I would be able to receive the NovoCure Treatment without stressing about funding. Why shouldn't I be angry?)

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

Second Opinion

[This is a post I started and was going to edit - but what the hell, I may as well post it now, even at this late date. Then I'll bring you all up to date in the next post.]

March 25th - Back from UCSF, second opinion and consultation. Very good news.

I will avoid all the details ( partly because I don't exactly understand them myself ) so as to not confuse anyone and/or bore you. Let me just say that after discussing my condition with the doctor at UCSF and looking at my MRIs and medical records it was advised that I not participate in the Clinical Trial. The reason for this is that my condition is such that regular radiation and the regular chemo should do for me all that is expected. In other words, things look very promising and according to the doctor I will, his exact words, "Be around for at least another two years" then who knows, I could be around for another twenty. Of course there is always the rare chance that I could be gone in a matter of months, but in all likelihood, I will be here for at least two years and probably many more.

Why? It seems that my surgeon did a very good job and got most if not all of the tumor out of the brain. Of course, this type of tumor sends out little microscopic tentacles with cancer seeds that could start to grow anywhere and at any time, but from the films taken of my brain there are no signs of this and everything looks just great. So, the experimental drug that was part of the clinical trial would create more risks than obvious benefits. For instance, the drug basically cuts down on the production of capillaries which feed the growth of a new tumor. However, in the process capillaries are also shut down in all parts of my body so what happens is that my same blood flow will occur but through fewer blood vessels meaning that most likely my blood pressure would increase. I would have to be vigilant in keeping an eye on it, but, should I begin to hemorrhage somewhere, well then, I would most likely die. There would be little they could do for me. The doctor said he could see no reason why, even though it is a rather low risk event, that I should expose myself to that risk. Also, because the tumor needs a blood source to grow, and it will create such a source, there is no evidence of any abnormal blood vessels in the pictures. So, why should I take a drug that would prevent the production of such a source, when one is not evident, yet could cause the production of a tumor to grow in some other fashion. This type of tumor is known for its ability to rapidly change course, to develop in a new direction and all because I actually took the drug. Finally, there is the fact that UCSF wouldn't, themselves, engage in such a blind placebo clinical trial. They have an ethical problem with that concept. Something we also had problems with and caused us a bit of concern.

I know I did a terrible job explaining the process, but the overall meeting was very encouraging. He was very optimistic about my being around for the next two years. I could always ask for the "Avastin" should the MRIs show that such blood vessels have developed; He agreed to review my MRIs on a regular basis (at a cost - but a minimal one) for such a development;

And, this is for you Tony, the doctor made it clear that there would be no reason why I wouldn't be able to climb Mt. Kilimanjaro in the future. That gave me a lot of hope. I like this guy.

It has been about a month since the accident. I have been trying to piece together all that occurred. All my visitors, when they came, what hospital I was in, pre-surgery, post-surgery, what I had said, what I had felt and the more I try, the more I realize just how fucked up I was.So, I know that no one is expecting anything of or from me, but nevertheless, I want to take this time to apologize to everyone for my conduct. I remember some of it, but it was as if I had watched it in a movie. Not exactly in a fog, but very real and I felt as if I were very much in control, knew what I was doing, understood everything and communicated quite well. I remember being in extreme pain. My back and shoulder, especially. I remember being told I had a tumor, a glioblastoma and that I had a year to live. What I don't remember is where everyone went when they were not in the movie. Was the cast just sitting around waiting for their next scene. Of course not, but that is how it seemed to me. I can't place the scenes in order and I can't remember what was said at any given moment. This part reminds me of the bygone days of old when I would perhaps drink a bit too much and the next day I'd try to remember who I had dissed and whether should I be embarrassed. And, embarrassed for what?

I've been told that I was very emotional. One minute I'd be crying, the next I'd be screaming in pain. I remember this, but only in the context of coming out of it. I remember short and fragmentary moments where I would feel as though I was just getting a grip on controlling my emotions, but as quick as I grasped hold, it slipped, as if I hadn't the ability to get a foothold in reality so that I might actually address myself and my situation and deal with it. The moment I thought I had that fingerhold, I would immediately let it slip and I'd fade into either another movie scene, sleep or find a place where I could let myself just cry. I don't know the reasons for all the emotional exhibition, nor am I trying to apologize for that bit of the show. I'm sure there are many reasons, some because of the drugs and some because of the physical effects caused by the tumor and the accident. Most important to me, however, is the confrontation with mortality. I may not have been in the best frame of mind when told of my fate, but I have and I will for a long time to come look at my life in a very different light. I have to review the meaning of it; I have to take the time, make the time, set aside the time, create the time just to make sure I have the time to enjoy the time and to contemplate the concept of mortality. I'm thankful already that I was given 'a bit of extra time" for such an opportunity. I drove by the accident scene (well, I rode by) and I saw that I could easily have died at that scene. I didn't (obviously) but more important is that I could have but didn't hurt anyone else, either.

Anyway, I started out with an apology and that's what I want to do here. I apologize for not getting back to everyone who has shown me so much love and care. I will. I promise, but it may be some time, yet. I want to apologize to those who pulled me from the wrecked vehicle. The two, one CHP Officer and one civilian I'm told, who decided to risk their lives for mine and pulled me from my vehicle even though power lines were everywhere and posed a real danger of electrocution. To you I owe a great deal of thanks, but also an apology for placing you in such danger. And to everyone in my movie, I apologize for not really being there, but I'm getting there. I'm sorry if I embarrassed anyone, I'm sure I should feel some myself, but I haven't the time. Let it go at that. I WILL SURVIVE THIS BASTARD THING CALLED CANCER. Lenny

Today is March 24, 2010, and I have been informed that someone out there wants to see me with my new haircut. So, here I am.

I was also asked by one of my neighbors if I had ever had my hair cut this short before, or even if I had it cut somewhat short at any time in the past. I gave it some thought and I remember getting a haircut when I got married. Other than at that time, I have always had long hair. But I like this, so I think I'll keep it this way for awhile.

Let me know what you all think.

Tomorrow we are off to UCSF for our second opinion and consultation. Then on Friday I meet with my surgeon for a post-op checkup, last minute questions and basically a run through on all the test results, MRIs, CT Scans, etc.

On April 5th, I begin participation in the clinical trial. It will involve radiation and chemotherapy along with a trail drug called "Avastin". Unfortunately, only about 50% of us in the clinical trial will actually receive "Avastin" while the other 50% will receive a placebo. Obviously none of us will know who is receiving what. There are all sorts of protocols set up for making sure that no one will be short changed or cheated. For instance, our progress will be monitored on a regular basis. If at anytime it appears that those receiving "Avastin" are also receiving significant benefits from the drug, then the entire trial will be stopped and "Avastin" will be administered to everyone. Sounds good, right? But what is a "significant benefit"? I asked the radiation expert how long this trial has been going on and he believed it was started in something like 2008. So, obviously they haven't determined in two years whether anyone has received a "significant benefit" yet. Either the drug hasn't shown signs of being successful or more likely, the methodology used in the trial hasn't allowed for a conclusion as to whether there has been a finding of a "significant benefit" for anyone as of yet. I can only hope that I am one of the 50% that receives the drug since in order for them to be testing it in a clinical trial there must at least be a belief that it has some benefits.

Anyway, the radiation and chemo will last about six weeks; Then the "Avastin" "Placebo" is administered once every two weeks for several months; I am considering also a mix of unconventional medicines designed to boost my immune system and to fight the recurrence of the cancer. Hey, its only my life we're talking about here, so unless it may cause me harm, I'm open to trying about anything.

And, I received all of my test results back from the lab and they were as the doctor said, "excellent". So, other than the tumor that was removed, the fact that it was a glioblastoma, I had seizures and was in a terrible accident, I'm actually in great physical condition. I WILL BEAT THIS and I will be around for quite some time. Lenny

Third Post:

It is Tuesday, the 23rd of March, and we're off to the South Sac Cancer Center for tests, questions, and the creation of a plastic mask (to keep my head in place during the radiation treatments and for them to design a pattern for the treatments). From there we'll go to the South Sac Kaiser for even more tests and then, if all is well within the universe, we'll head on home. Everyday is similar to this day yet unique in the type of tests conducted and the various required activities that will eventually lead up to my receipt of treatment. I WILL BEAT THIS.

Today is also the day that President Obama will sign into law the Health Care Reform Act. It is also the first day of the demise of the Republican Party. Although they have been working on their own destruction for quite some time, now, this will mark the first day of the official campaign to declare the party as one of absolute no relevance.

We witnessed over the weekend actions that should have embarrassed even the most partisan of politicians, yet there was no reaction from the Republicans other than the, "Well, boys will be boys" type of comment. This in reaction to yelling and calling out "nigger" and "faggot" and actually spitting on fellow human beings for their difference of opinion. And, where were the Republicans, if not actually applauding such conduct, or giving weak excuses, they were in hiding somewhere oblivious to all that was going on.

The party of "no" was, if nothing else, consistent. How could any group of people actually agree in advance to vote "no" in mass to anything placed before them by the Democrats? Why do we need them? Why don't we just have one who speaks for all of them? Since in essence, that is exactly what the republican party represents.

On February 23, 2010, I unfortunately found out that I had brain cancer. I also found out how fortunate I was to have insurance. I will have a fighting chance to save my life in a battle where all the odds are stacked against me, but at least I won't be concerned about the cost of this type of treatment or the cost of that type of medicine as opposed to some other treatment or medicine. I will be able to focus all my energy on beating this ugly little bastard known as cancer. AND I WILL BEAT IT, you can bet on it. But then I am one of the lucky ones who just happens to have insurance. Can anyone be so cruel as to actually argue, to actually cast a predetermined vote of "no" against allowing another human being the opportunity to fight for their life? This is the time to remember the names of all those Republicans who lied about death panels, who approved of calling others "nigger" and "faggot" and "baby killer" and could care less whether I lived or died. I am very proud of what the Democrats did this weekend. And I will remember it come November. And, oh yeah, I will be here, too.

Day2

The following four pictures were taken about three days after my surgery. Since then, I have had the staples removed. Tomorrow I will meet with the Clinical Trial Nurse to go over all the CYA clauses in the contract, on Tuesday I will meet with one of my oncologists/radiologists for the initial meeting and creation of a mask and hopefully by the end of that week I will begin my treatments.
In the meantime, I have met with a Doctor from Aptos who specializes in alternative medicines; I have met with a team from Dallas, Texas who provide alternative forms of treatment; I am having my records reviewed by a team of Doctors at UCSF for a consultation and second opinion; And I have ordered a three month supply of a cancer fighting drug from a lab out of Southern California that I will begin taking after my radiation treatment ends. I presently have about 10 to 12 Doctors that I am working with and whom I have all the respect for that is imaginable. These folks are just amazing. The amount of time they put into this is really mind boggling, and still they do it with such care and patience it would seem impossible - yet they manage -
So, the photos are not pretty, sorry about that, but they are real and so is cancer. I WILL BEAT IT THOUGH!

Lenny