A Brighter Mood

It’s Tuesday afternoon and I’m recovering from the surgery. I’ve been sleeping better, resting more, staying on a liquid diet (but still getting the needed calories and nutrients), and did a light workout (5 pound weights and stationary bike riding) today. I’ve always liked working out and its one more activity that makes me feel “normal.” This is very typical in the Cancer World community, the drive to feel normal. I record my workouts. My most recent prior workout was almost 6 weeks ago on 9/21; the one before that was almost 3 months ago on 8/7. Between the chemo and the surgeries, I have not been feeling strong enough to work out. When I’m feeling well, I work out 3 - 4 times per week. Before cancer, I used dumbbells weighing up to 35 pounds, so 5 pounds is a bit wimpy, but I’ll take it for now. Before long, I’ll be up to the 10 pound weights.

I read someone’s cancer blog the other day. It was very well done. It had beautiful pictures and a wonderful story of long term success in keeping the cancer at bay. It was written by a women who was probably in her mid-twenties, but had been fighting cancer for over 10 years. The author began or ended each blog entry with what she enjoyed most that day, that is, what made each day special. I began thinking about this and I liked what she had done. I’m not going to copy it, but I am going to try to spend some time each day thinking about what made the day special or good for me and be thankful for that time and activity. There may be a lesson here for others are well.

I have 13 days until my next cancer appointment. That’s a long time in my world without having to see a doctor. It may not be the best thing that has happened to me today, but it’s near the top of the list. I suspect I’ll begin pre-emptive chemo in mid-November again as well. Not a happy thought.

Enough for today. Take care and stay well everyone.

More… Post Surgery Update

It’s Sunday afternoon and I’m still recovering from the prior week’s surgery. The surgery seems to have been successful, as previously reported. But, the pain in my tongue has not subsided which has resulted in further difficulty in eating and talking and has added to the amount of pain medicine required to be comfortable. The pain medicine makes me a bit drowsy as well. I may shift to a complete liquid diet for a few days to give my tongue a chance to heal and thereby allow me to reduce my pain medicine. I had some wonderful visits by family and a friend this week. Thank you. Also, some correspondence from a few people I haven’t heard from in a while. That always makes me feel good.

I’ve spent a little more time talking to various doctors about early cancer detection. It appears that early detection of lung cancer is a magic bullet in the battle of this disease. The issues here are a bit complicated. First, the cost of a chest CT is about $200 – 300 (you have to shop around a bit for this price) and more than likely will not be covered by insurance. Second, there is a natural avoidance by seemingly (and probably) healthy people to go through the expense and inconvenience of this test. Although it is non invasive, painless and only takes about 15 minutes to perform, the scheduling hassle is still there. Also, the “it can’t happen to me” syndrome is pretty strong. And, third the potential for a false positive would lead to more costly tests or even invasive procedures that could lead to health complications. So, for the time being, this magic bullet may not be gold or silver, but it must be at least in the bronze range. If you are a smoker or a drinker, are around smokers, or you used to smoke heavily, I encourage you to consider this test. You can lead a horse to water, but you can’t make him drink. By this, I mean the action is now in your hands. By the way, I got my chest CT results back on Friday and it was negative for disease. This is what I was expecting, but it is always nice to have it confirmed.

I read a very sad blog entry today. It chronicled the final hours of a cancer victim by his spouse on Friday. If interested, it is at http://daveberg.redtoenail.org/. I am a bit obsessed with cancer stories: good, bad, and sad. If you’re not up for reading a sobering account on this subject, I’d suggest skipping the above story.

Take care. I hope you all had a good weekend.

Post Surgery Update

It’s Wednesday and 4.5 days since surgery ended. It was a tough few days, but as of yesterday, the pain medicine seems to be working… FINALLY. It really didn’t seem to put a dent in my pain until then. I’m now able to sleep better, wash, walk around, read, and concentrate again. That all feels good. When in pain, all those normal activities fall away and I’m relegated to Law & Order re-runs.

I was able to locate a new website which specializes in cancer blogs. As I’ve said in the past, I read a lot about cancer everyday looking for solutions and ways to deal with my own situation. The blog is called RedToeNail.org. This is an online community designed to help people whose lives have been touched by cancer. Whether you are the one with cancer or it’s a friend or family member who you are caring for, RedToeNail.org offers a supportive online environment where you can share your experiences via an online journal (blog), learn from others and find support for the challenges you are facing. I’m still exploring its resources, but am finding it helpful. If interested and useful to you, their website address is…

http://www.redtoenail.org/

I have a few out of town visitors coming in today and tomorrow. Since I’m feeling part way human again, I’m very excited about their arrival. I’m sure I’ll be on the slow side for them, but we’ll have a good reunion nonetheless.

Take care and stay health.

2:25 PM on Thursday

That’s the last thing I remember on Thursday afternoon. This is my 7th surgery in three years. I make it a habit to know what time it is when I go under. I burnt a CD for my doctor to play while performing my operation. We were on the second cut, “Bad Day,” by Daniel Powter. The first cut was “Hey there Delilah” by the Plain White T’s. The next thing I knew, it was 5:40 PM and I was in the recovery room. My doctor enjoyed the music selection. There were about 5 people in the operating room when I went under.

The surgery was a success. My doctor removed the two small tumors (each about the size of a dime), got clean margins, and didn’t impact my facial nerves. I was in substantial pain in the recovery room, mostly my throat and tongue areas, not the surgical site. They said it was probably from the tube they put down my throat. They gave me two shots of Diladid to ease the pain. The nurse said it is 10 times more powerful than morphine. She also said I shouldn’t have any more because it could keep me from breathing. This worried me in my fuzzy, post surgical mind. She probably shouldn’t have said that. We spent the night in the hospital. Always a pleasure. They wake you every 30 minutes during the night to see how you’re doing. It is definitely not a place for a good night’s sleep. I got a chest CT at about 1:00 PM on Friday and was released at 2:00 PM. It is now Saturday afternoon and I’m still quite sore. This includes my throat, tongue, and surgical site areas. I’m taking some additional pain medicine to help me through this period. So, my new worries are the results of my chest CT, which will probably come back negative, and my throat/tongue pain. I’m not so sure about these areas being clean longer term. I will see my surgeon in about a month for a post surgical follow-up. All my stitches are either stiri-strips which will fall off within two weeks or are dissolvable. The incision is in front of my left ear and about 5 – 6 inches long. I can’t see it because of the stiri-strips.

Now onto the longer term plan. In 3 – 4 weeks, I’ll see my chemo doctor and begin more chemo. He’s going to review what I’ve had to date to see if he wants to try any of the same drugs again. I don’t view my prior chemo as a failure; it just wasn’t the overwhelming success we had all hoped for. He has a new drug in mind, one already in use for this type of cancer, and we’ve been researching it via the web. If we can find the right drug, it will kill this beast. That’s the “hope” part of all this.

That’s enough for now. Take care and stay well.

Surgery on Thursday

By the time you read this, I’ll most likely be heading into or having surgery. I check in for a pre-op visit with the anesthesiologist no later than 11:00 AM on Thursday. After getting checked out, my surgery will be sometime in the afternoon, probably later than earlier. I will be fully under, unlike my recent biopsy experience. They will make an incision in front of my ear, probably about 4 - 5 inches. That will give them the room they need to work. It’s a little more complicated than I was hoping. They have to move my facial nerve out of the way so as not to cut it. That could cause some facial paralysis. But, the paralysis, if it happens, should not be permanent. No guarantees on this however. I’ll spend one night in the hospital and then head home on Friday if things go according to plan.

To back up a little, I met with my chemo and surgery doctors today. We all (the three of us) agreed that 1) surgery is needed 2) further chemo is needed, and 3) the chance of a recurrence even after the surgery is very high given my history. My chemo doctor’s preference was to do the chemo first, then the surgery. His rationale was to see if the drug he is planning to use is effective on my detectable tumor. And, the sooner the better because of the undetectable cancer cells which we all believe to be there. He wasn’t violently opposed to doing the surgery first however. I choose to do the surgery now versus later because: 1) the tumor is getting bigger and this could lead to a even more complicated surgery, 2) it is beginning to press on my facial nerve which is uncomfortable, 3) I want this thing out of me, and 4) maybe most importantly, I’m not strong enough for another round of chemo right now. On a 1 to 10 scale, I’m still at a 5 level for stamina and strength. I need more time to recover from the prior 9 months of chemo. I was hoping for early next week on the surgery, but my surgeon said he was out all next week and we could do it when he got back. I didn’t like the idea of doing nothing for 12 – 13 days, so the other option, which I took, is tomorrow (Thursday). Both doctors examined me and didn’t see any further signs of tumors. They do want me to have a chest CT to rule out a spread of the disease to my lungs or elsewhere. I’ll probably have that within the next day or two. Why that couldn’t have been done when I had my Head & Neck CT about 2 weeks ago, I’m not sure. I guess that would have made it too easy on me.

I’m getting really tired of writing about cancer and reading about it and researching it on the Internet every day. It has become my life, it does define me. I would much rather be researching my next vacation to some far off exotic location. But, that’s not going to happen right now or within the next few months.

I am beginning a list of people who you would rather not be on a first name basis, unless, of course, they also happen to be your friend. Here’s the beginning…
- Your pharmacist (she knows me and usually welcomes me by name when I refill my prescriptions).
- Your doctors (especially those which end in “ogist.” That would include your oncologist, proctologist, radiologist, and urologist to mention a few).
- The Public Defender (no personal experience)
- The Judge (both civil and criminal, again, no personal experience)
- The local law enforcement or FBI/CIA/NSA agents (no personal experience)
I guess there are others, but these were easy pickings.

Oh well, take care and stay healthy. I’ll update this blog as soon as possible following my surgery.

Separating the wheat from the chaff

Not much has happened since my last blog entry. My appointments are set at the cancer center for Monday (Phase I group) and Wednesday (Chemo and Surgeon). My fear is that they will not have any next steps, reasonable or otherwise. That fear is shared by my wife. What does one do when one of the best cancer centers in the world runs out of options? That question will be forefront on my mind for the next 3 days.

I’ve more than less decided against a treatment at an outside small cancer clinic in Houston. There is too much negative press on the web about the clinic and its practices. I’m guessing this doctor has helped some people and believes in what he is doing, but he doesn’t have the credentials. Also, he doesn’t follow the FDA rules when he could, he breaks them. One could argue that he does this so that he can treat and cure more patients; one could also argue that he does this for his own personal financial gain. When in desperate times like this, it’s difficult to separate the wheat from the chaff.

I’ll let you all know what happens at my cancer appointments later this week.

Take care everyone.

Biopsy Results… Positive

I’ll keep this short. My biopsy result from last Friday was positive for squamous cell carcinoma. This is the Head and Neck cancer I’ve been fighting for 2.5 years. I’m being referred to the phase I group at my cancer center. This is the group that is on the cutting edge with experimental treatments. The standard and customized treatments I have undergone have failed to cure me of this disease. We’re shooting for a set of meetings one week from today on Wednesday October 17th. I’ll meet with the experimental group, my chemo doctor, and my surgeon. Between now and then, there is really nothing more that can be done. I’m sorry to have to share this crummy news with you all, but I’m assuming you’re reading this to stay up with my situation and there you have it. I really have no more information to provide at this time.

Thanks again for your support and stay well.

Early Cancer Detection

This blog entry is not about me, it is about cancer in general. I came across a fascinating article in the online version of Wall Street Journal yesterday (10/08/07) on lung cancer. The online address for this article is…

http://blogs.wsj.com/health/2007/10/08/tangled-web-of-conficts-over-lung-cancer-screening/

Here’s the article’s paragraph that caught my attention…

In a study published in the New England Journal of Medicine last year, the Cornell group reported that CT screening of more than 30,000 smokers discovered first-stage lung cancer in 412 of them. Of those, all but eight received some kind of treatment. The overall survival rate for those found to have early stage cancer was 88% after 10 years. The eight patients who declined treatment all died within five years of diagnosis. Currently, the five-year survival rate for lung cancer is just 16%, mainly because the disease is often detected too late for treatment to work. That article concluded by noting “no potential conflict of interest relevant to this article was reported.”

Please stop and think about this for a just a minute. If this study had statistics that gave mortality rates after 10 years, then the study was over ten years old. It is not a recent study. 88% of the people with early detection were still alive after 10 years. That means that 12% of the people died who had been treated. The mortality rate table for people aged 45 – 55 is a little over 4%. I could have picked a younger or higher age group (which had a lower and higher mortality age rate respectively), but I choose one which seemed reasonable for smokers. That means that only 8% (12% - 4%) more of this population died than those published in current mortality tables. This is compared to 100% of the population that died (8 people) within 5 years without treatment. The 8% also compares to 84% of people who die within 5 years from this disease. That, my friend, is a huge difference! It begs more questions. Compared to a CT scan, treating cancer is a very expensive proposition. So, why isn’t this being employed as a way to avoid the cost of treating a deadly disease and eliminating the suffering of cancer patients? I may dig into the cost a bit more and if I do I’ll report the findings in this blog. If early detection in lung cancer is the silver bullet for lung cancer, could it also be the silver bullet for Head and Neck cancer?

A study published in mid-April of this year (2007) showed a 90% success rate in detecting H&N cancer with the analysis of a simple mouth rinse before any physical signs of H&N cancer were present. It also estimated a dramatic increase in survival rates for those detected early with the disease. Those finding were written up in the following article…

http://www.medscape.com/viewarticle/555283

Another H&N cancer article references the negligible progress made in the 5 year survival rate of H&N cancers over the past few decades and further highlights the physical and emotional distress of those with this disease…

http://www.oralcancerfoundation.org/dental/screening.htm

Again, this raises further questions. With 34,000 people in the US diagnosed with H&N cancer annually and 8,000 deaths per year from this disease, how long will it be before this oral rinse analysis becomes part of the annual or bi-annual screening process, much like breast and prostrate screenings are today? This is too late in my case, but I can tell you, an extra few minutes doing a mouth rinse test during my periodic physical exams could have saved 100s of thousands of dollars in treatment cost, 100s of thousands of dollars in lost productivity, and avoided severe pain and suffering that goes beyond myself, but affects all those that are close to me. Yea, it would have been worth it.

In summary, why can’t we look at early detection like we look at the elimination of polio? We rarely treat people with polio today. It is practically non-existent in the US. I know this raises other questions. For example, who pays for this early detection? Are the above articles accurate in their finding? I for one will be following this train of thought and once again, as new conclusions are reached, I’ll be sharing them in this blog.

Your thoughts on this subject are welcomed. Thanks for listening.

My Biggest Fear

I can only think of one or two people with whom I’ve shared this, but it seemed like a good topic for today. My guide for and inspiration in writing this blog is Leroy Sievers. He is the one with the cancer blog on the NPR website and had the “Living with Cancer” special on PBS with Ted Koppel last May. His NPR blog address is…

http://www.npr.org/blogs/mycancer/

I follow his blog daily. I’ve submitted comments to his blog 18 times in the past 4 months. Based on the number of comments he gets daily, I’m guessing his daily readership to be in lower few thousand of people per day. It is a relatively large community. Between Leroy and those that submit comments, the blog provides hope, emotional insight, treatment insight, and a real sense of an entire population that that has walked in his shoes, the perspective from those that care for someone in Leroy’s situation, and writings from people who have lost loved ones to cancer.

I can’t say that I feel close to Leroy personally, I’ve never met him. But I do empathize with him and many of his readers. It’s almost as if Leroy and I were on the same roller coaster with its ups and downs, but currently he is a few train car ahead of me. Sometimes we’re in the same car together; sometimes I’m the one ahead of him.

Last Monday he had a major operation. The cancer had spread to the bone in his spine and a prior surgery to remove that cancer had left him in constant pain. The surgery Monday was to replace one (or more) of his vertebra contaminated with cancer and to alleviate the pain. Ted Koppel, who is a personal friend of Leroy’s, provided a blog update this past Friday. Bottom line, the operation seems to have been “a great success,” but (there’s that but from Cancer World again) during the procedure he suffered a minor stroke. The stroke caused a loss of peripheral vision in his left eye. They call it tunnel vision. “The doctors are not optimist that it [Leroy’s vision] will come back.” This has shaken Leroy pretty bad. It means he will not be able to drive again.

There were 100s of comments on his blog leading up to Leroy’s operation. 98% plus of them were well wishes and prayers. They were all generous and taken in the spirit in which they were delivered. There were a few that resonated with me in a different way; it was the other 1 to 2%. These were comments from people who highlighted the seriousness of the operation. What I don’t think many people fully understand who do not have cancer (or other serious diseases) is the impact of the treatment on our bodies. Our bodies can only take so much. The surgeries, chemotherapies, and radiation all cause a high level of stress, not to mention the actual physical impact, on the body of these treatments. There is a balance that must be taken into consideration and we must rely on our doctors to help us make those decisions where balance comes into play. Since everyone is different and since some medical decisions can not be made until game time (e.g., how much tissue needs to be cut away before clean margins can be found), this is not an exact science. We, the doctors and the patients are in this together. Speaking for myself, I have signed dozens of forms over the past 3 years providing consent and acknowledgement of the risks of my procedures. It’s usually a pretty long list of possible negative effects. The chance of anyone of them actually happening is generally small, but they are there for a reason… TO INFORM THE PATIENT OF THE RISKS.

This has rambled on long enough. So, what’s my biggest fear? If you remember back to the beginning of this blog entry, that was the title. My biggest fear is being permanently incapacitated. I’m a very independent person. I have been since as long as I can remember. Even at 2 or 3 years old, I was independent. Being incapacitated scares me more than death. There is also a fine line between being disabled and being incapacitated. That line can change over time. I think the main difference between the two is that a disability can be overcome, being incapacitated can not be overcome, it is permanent and seriously impacts one’s quality of life.

I hope this provided you with some useful insight and food for thought. As soon as I hear from my doctors on the biopsy results from Friday, I’ll share them with you.

Take care everyone.

Preliminary Biopsy Results

I went to the cancer center on Thursday and Friday. Thursday was for a pre-operating visit and Friday for was a biopsy of a lump that appeared on the side of my face about 2 weeks ago. They made me comfortable with 5 doses of Versed and Fentanyl in the operating room, but I was fully awake. I talked coherently to the doctor and nurse throughout the procedure. They said most people are asleep by dose 2 or 3. Oh well, no complaints. They used ultrasound to guide the needle biopsy. I watched the whole thing on a 25 inch monitor. This is the same monitor the doctor used to perform the biopsy and guide the needle. This spot is about the size of a dime and has the thickness of about two to three dimes. The preliminary pathologist’s finding is suspicion of cancer. That’s bad news on a few fronts. The good news though is that I switched to GEICO and saved 15% on my car insurance. Kidding aside. I have to wait until next week sometime to get the final biopsy results and talk to my doctors about next steps. The actual good news is that it seems to be pretty superficial. So, I’m thinking it may be easily removed without too much surgery and scaring. The bad news is, this was missed on my CT scan and it was only that my doctor went back to the radiologist and asked about this spot that they even did the biopsy. That means, there may be other spots. Plus, this spot just popped up on my face about 9 days after my last chemo cycle. Other than this, I’m fine. I’m regaining strength, attitude, and the will to fight this after being off chemo now for about 4 weeks. The last two years of treatment have been a blur in some ways. I’m not sure what has been worse… chemo, surgery, or radiation. Regardless, the result is that I’m still here to write about all this, so they continue to be the lesser of the evils.

Take care everyone.

Cancer is War

Before getting into the topic of this entry, a brief update on my upcoming tests. I am scheduled to see the anesthesiologist on Thursday and then have the ultrasound / biopsies performed on Friday. They use the ultrasound to help guide where to take the biopsies. I will be under a general anesthetic, either partially or fully. My guess is more fully than partially due to what they have to do to perform this procedure. It is scheduled to last under an hour and will take place during the afternoon. I should have the results back by Tuesday next week.

I need to set the stage for you for this next part. I have been watching the 15 hour documentary on World War II on PBS. It is called “War” and I’ve learned a lot about history and humanity. Many times while watching this program, I begin to think (or drift) about how closely cancer parallels war. I’m not making any judgment that one is worse or better than the other. I can’t, I have never experienced war and therefore am not qualified to do so. The following paragraph is a letter written by Pilot Lt. Aanesnson on December 5 1944 to his fiancée, Jackie. He begins the letter by saying he has avoided her questions on what it’s like over there and has painted a somewhat rosier picture so as not to worry her. Following is an excerpt from his letter to correct this false impression. A brief warning, this is pretty graphic, so if you’re not up for it, I suggest not reading the rest of this entry.

Lt. Aanesnson writes, “…so let me correct that [the war environment] right now. I still doubt that you will be able to comprehend it; I don’t think anyone one can that has not been through it. I live in a world of death, I watch my friends die in a variety of violent ways. Sometimes it’s just an engine failure on take off resulting in a violent explosion, there’s not enough left to bury. Other times it’s the deadly flak that tears into the plane, if the pilot is lucky the flak kills him, but usually he isn’t and he burns to death as his plane spins in. Fire is the worst, in early September one of my good friends crashed on the edge of our field. As he was pulled from the burning plane the skin came off his arms, his face was almost burned away, he was still conscious and trying to talk, you can’t imagine the horror. So far I have done my duty in this war. I have never aborted a mission or failed to dive on a target, no matter how intense the flak. I have lived for my dreams for the future, but like everything else around me, my dreams are dying too. In spite of everything, I may live through this war and return to Baton Rouge, but I am not the same person you said goodbye to on May 3rd. No one can go through this and not change, we are all casualties. In the meantime, we just go on, someway, somehow this will all have an ending. Whatever it is, I am ready for it.”

The interesting thing about this is that he never sent the letter. He didn’t want to worry her. I debated about putting this in the blog. But, it did a pretty good job of describing how I currently feel about my cancer and situation. Lt. Aanesnson was one of the lucky ones. He is currently alive and read the letter as part of this current documentary. Maybe I’ll be one of the lucky ones too.

Stay well and take care everyone.