Latest PET and CAT Scans -- RESULTS!

I went to Advanced Imaging on Wednesday to get a new PET and CAT scan. The purpose of these tests are to monitor the cancer and see if the treatments are working to kill the existing tumor and keep it from spreading. As I write this I am sitting in the sunlight of the solarium at Florida Cancer Specialists getting my 18th chemo infusion. I have not heard anything yet about the results of my PET and CAT scans. Hopefully, there will be no surprises.

The last time I had a PET scan it took more than an hour. Normally, the scan take 25 minutes, but apparently they had a software upgrade that was causing the machine to crash while I was in it. I became extremely anxious while in the machine waiting. The feeling was the feeling you might have if you were drowning. I almost did not complete the test last time, so I was nervous about doing the test again. This time I brought my i-pod with me and that helped to get my mind off the feeling I was in a coffin.

STOP.....FLASH!

I sent an e-mail to Scott Lunin while I was sitting here to let him know I was awaiting the test results. He just came by to personally deliver the good news! The tumor has shrunk to 2.4 X 2.1 cm in size; the SUV (sugar uptake value -- a measure of the metabolic activity) is in the normal range of 3.1 and there is no evidence of disease elsewhere! The treatments are continuing to shrink the tumor and, most importantly, reduce the metabolic activity. That is very good news indeed!

One of the peculiar things that has happened to me is that I am frequently getting leg cramps at night. I will be sleeping and all of a sudden my right leg calf will cramp, as though I had just run a marathon. Apparently, the chemo can affect the level of potassium in your blood and low potassium can result in muscle cramps. Now here is the weird part. This morning I fell out of bed and hit my face on some glass candle holders that are at my bedside. I cut my nose and lip and bruised my cheek. I THINK I was DREAMING that I had a muscle cramp and jumped out of bed to try and walk it off. But I don't remember anything until waking up on the floor. Yoko observed me jumping out of bed....standing for a second and them collapsing on the floor. (I scared her to death.) So now, in addition to having cramps I will have to determine if the cramps are real or imagined!

Catching Up

I have actually been writing quite a bit, I just have not posted everything I have written. I have been in a bit of a funk this past week, for no reason that I can discern easily. I skipped going to Project Graduation on Tuesday night and Rotary on Wednesday morning. Its been hard to keep going this week for some reason.

It started with my feeling sick over the weekend. After chemo last Friday I was nauseated. I did not work the air show, as I normally do, because I did not want to be exposed to thousands of people while my WBC count is low. On Saturday I had the first of three neupogen shots. Saturday afternoon I played golf with Chris and Kirby at a Kingsway. I was feeling nauseous during golf and finally lost it in the bushes around the 7th hole. I blame it on the chemo, but truthfully it might have been the golf. (I shot over 100 for the round that day.) I was not feeling much better on Sunday and my golf only improved slightly. (Yoko and I did finally get all our tax stuff together on Sunday before golf and I delivered it all over to my tax accountant on Sunday afteroon.)

On Monday I had a neupogen shot in the morning. In the afternoon Yoko and I went to sign our estate documents. There is a lot of work I need to do to get our affairs in order. The primary culprit is the fact that Yoko is not a US citizen, which complicates things. She not entitled to the "unlimited marital deduction" that married US citizens are entitled to receive. As a result, any amount over $2 million today that I leave to her as part of my estate (which includes life insurance proceeds) is subject to the estate tax, at 45%. I am entitled to gift Yoko up to $125,000 per year, so our plan is to gift the things in my name or in joint name to her. In the meantime, we will try and get her citizenship. She is my healthcare surogate and visa versa. Yoko also has my power of attorney. John Mizell, our estate attorney, warned that should she ever need to sign consent forms at the hospital for any procedure on my behalf, she should sign for me "as surogate". Otherwise, the hospital could become a creditor of my estate for any bills insurance does not pay and all our carefully layed estate plans could be ruined. (Any of you readers who might be with her at the time take heed!)

All the discussion of death and taxes did not lift my spirts. On Tuesday I got my third shot of neupogen for the week. At lunchtime on Tuesday I attended the Charlotte County Estate and Tax Planning Council, where I listened to more discussion of death and taxes. Afer the luncheon, which was also held at Kingsway Country Club, I was still not feeling great, so I decided to go home and go to bed. I did not leave bed until late Wednesday morning. Mostly I just slept. (Tuesday night I did finally finish "Team of Rivals," the book on Lincoln that I started when I began chemo last October.)

I decided to take myself off lyrica (nerve pain medication), with Dr. Lunin's permission. If I have nerve pain that comes back, I can always go back on medication, but I am not in the habit of taking drugs unnecessarilyand this paricular drug affects the brain. I am down now to taking just one pill a day for acid reflux. I have been off lyrica since Tuesday and feel no worse for it. In fact, I am wondering if the lyrica could be some of the reason I was feeling depressed.

I started feeling better when I went back to work on Wednesday and I was able to put in a full schedule on Thursday. Right now it is Friday and I am back in treatment and feeling fine once again. This week, I am prepared for nausea, should it occur. I asked Scott for a prescription, which we had filled. If I am not feeling well after chemo at least I will have something on hand to take.

Now for the good news. In my meeting with Scott today, he told me that my CEA(carcinoembryonic antigen) (which is a marker in the blood commonly associated with lung cancer -- like the PSA is associated with prostate cancer) was back to normal range. When the cancer was discovered in October, my CEA level was 77 (normal is the 4 - 6 range). In December the CEA was 12 and it is currently 5. That is a good indication that treatments are working. This week I will have three more neupogen shots and on Wednesday I will have both a CT Scan and PET Scan to see what progress we are making. I am not looking forward to the PET Scan because of my bad reaction last time. Hopefully, we will find that the cancer is under control.

I asked Scott what I should expect going forward in terms of what we are going to do. After this round of chemo, assuming my scans come up clean, the only thing left to do will be to monitor my condition. The most likely site of recurrance will be the brain, because the "blood-brain barrier" does not allow chemo to work its magic in the brain as well as below the neck. I asked Scott whether we should consider using whole brain radiation as a preventative measure. He was not adverse to the idea and we will pursue this with David Rice at a later date.

The other bit of good news is that I was invited (expenses paid) to the Lung Cancer Advocate Summit in Chicago. The problem is it happens the week before Paula's wedding and is in conflict with Project Graduation, which is May 29th. Maybe next year? I was also invited to go to Washington DC to lobby for lung cancer research. I think Yoko and I will plan to make that trip in July.

Learning from Lincoln

I you were to listen to me talk about health care these days, you would think I was a democrat. I have plenty of family and friends that can tell you I am not. I believe in small government, self-regulation, low taxation, personal freedom. and taking responsibility for myself (versus blaming others).

I think we can create the society we want but it requires all of us participating fully and doing our fair share. That means voting, paying our taxes, contributing to our communities, and not blaming (suing) someone else at every opportunity. We have to look to our culture and social norms to regulate our society and look less to the law. If we could all just do what is "right" many of the problems in our society would be significantly reduced or just disappear.

I believe the current crisis in health care is due to government's well-intentioned interference in the marketplace. I think the market place is self correcting and that economic laws are as real as the laws of physics. If you interfere with natural economic laws, there may be unintended consequences. I also understand that the complexity of our world is such that no one can understand it all and that, just as there are destructive tumors, market forces can also get out of hand and create havoc. There needs to be some regulation of industry.

I believe that market interference post 9/11 (via the Fed) is largely why we have had the recent real estate bubble. Market interference (via Medicare's indirect price controls) is why we are dealing now with a collapsing health care system. (And if you don't think our health care system is collapsing, you need to walk in my shoes and speak with the people I speak with every day. Effectively, we don't have self clearing markets in health care.)

The best way to understand markets that don't clear (i.e. don't find a natural equilibrium) is to look at the communist system. I remember going to China to negotiate a possible joint-venture duck farming operation. At the time China was a planned economy and one of the things they did not produce enough of was duck. They had plenty of chicken, but not enough duck. When I asked about pricing, duck was priced less than chicken. I asked why they did not raise the price and the answer was that pricing duck less than chicken was politically more popular. (Sound familiar? Keeping medical costs low is politically popular...so we set medicare reimbursement prices low; insurance companies tie their reimbursement schedules to Medicare prices...and the next thing you know we don't have market clearing prices.) In a nutshell, that is the problem -- central planning (Medicare and Medicaid -- medical welfare) tends to distort market forces.

Health care providers give up family life and outside activities to care for their patients. They HAVE to or they could loose everything in a law suit. They are working twice as hard to make half the money, so they stop being providers. Now we have increasing demand for health care services (as technology improves), a small supply f properly trained and licensed providers, and a ceiling on prices. Does trying to see a doctor these days or going to the hospital emergency room remind you of getting into a Russian bread line? That's what happens when you don't have market clearing mechanisms working properly.

Providing health care services has become some screwed up that even insurance has become unaffordable for many many people. This problem is only going to get worse. The problem has to be fixed somehow -- and the best answer is probably going to have to be to remove government price regulation and interference. Too many doctors are quiting the health care profession (read supply is dwindling) because they are being forced to practice medicine in a certain way and not reaping the rewards for their hard work. Insurance companies and pharmaceutical manufacturers are creating havoc and hurting all of us with their lobbying and special interest activities.

The best example of how sick things are is the advertising being done to push new drugs. Why is Plaxix and Cialis and Viaga and Celebrex being constantly advertised on TV? Shouldn't your doctor make the medical decision about what drugs you take or what treatment you have or what tests are appropriate? In my case, if Scott decided that the best treatment for me next was Avastin, my insurance would not pay for it...and one infusion could cost up to $15,000! (The insurance companies have decided that Avastin can only be used on metastatic disease...not the primary tumor. Who says so? If Scott and I want to try it, should I not be allowed to use my insurance dollars in this way? That would be like my property insurer telling me what kind of paint I can use on my house after a hurricane has struck.)

Anyway, something has to be done. I am afraid the treatment is going to have to be radical and it is going to be very very painful and unpopular.

For example, I think Medicare should be for the very poor and disabled and should provide only limited (i.e. not first class) services. Everyone should have access to care...but not all care needs to be equal. If you are rich, you can afford a Lincoln Continental. If you are poor you might have to ride in a Ford Focus or take a bus. No one said you are entitled to a limo if you are poor.

I think wealthy and affluent retirees should have to continue to pay for their own medical insurance. I think there should be a way that allows for group insurance for unrelated people though perhaps a government-sponsored group insurance program that has no medical underwriting. I think that medical insurance premiums need to be regulated. But mostly, I think the government needs to be thinking out of the box with new strategies -- finding ways to provide care to people who don't want private insurance (al la community clinics, hospitals and pharmacies). If you want better than the minimum the government provides. If you want the best, you will have to pay for it.

I don't have the answers, but I have a lot of questions about why more is not being done. For example, what about the government paying off student loans for doctors and nurses who would volunteer to work in a network of government sponsored clinics and hospitals? What about federal tort reform that would make suing a doctor that volunteers his or her time impossible -- or at least indemnifying doctors who are sued over volunteer work. What about reducing patent protection for pharmaceutical companies that waste research dollars advertising the drugs they discover? What about some regulation that gives medical insurers less say about reimbursement pricing or, better yet, allowing the patient discretion on how they want to spend their insurance dollars -- giving some incentive to shop around on their own. What about federal charges against doctors who demonstrate a pattern of abusing the system by making un-needed referrals for tests and procedures just to create traffic and income. What about a law that says hospitals can legally refer non-life threatening emergency room patients to a community health clinic and be afforded protection from law suit. What about a law that makes it incumbent on every local county government to provide some system of primary care -- just like we force local government to provide elementary school education.

I have been listening to the Presidential candidates. When is the REAL debate on this going to begin? After reading "Team of Rivals" and how Lincoln dismantled slavery, I got to thinking that we need a real visionary in the White House that is going to tackle this problem -- the way Lincoln tackled and finally resolved the problem of institutionalized slavery. I would like to see everyone have access to health care. I think it is a human right. I don't think the quality of health care should be the same for everyone. You want to have the best? You have to pay for it. You want to have health care and can't afford the best? We should have a system you can access....even if you have no money. In the long run, we will all be better off.