Darn!

My doctor called a few minutes ago. He circled back to the radiologist about that small new growth on my face that popped up last Friday. The CAT scan showed a small inflammation. To play it safe, they want me to come in next week, probably early in the week, and perform an ultrasound (painless) and do a needle biopsy (painful). That means sticking a needle into the side of my face at the top of my jaw bone and drawing fluid from the area. It feels hard to me, so I'm not sure how they expect to draw fluid, but that's the plan. I know they just want to be cautious, which is good, but I'm understandably disappointed. Up until a few minutes ago, my next appointment at the cancer center wasn't for about 5 to 6 weeks. I'll get over it, but thought I would share the news. There are many ups and downs in Cancer World. The one thing of certainty in this World is uncertainty.

Take care everyone.

Great News, yes... but

There is no new news to share since my last posting. I've decided to make this post more like a public service announcement. With cancer, there is always a "but." Yes, my CT scan came up as negative for any evidence of disease. I've read all of your e-mails and comments and the good wishes sent my way. I truly appreciate each and every one of them, more so than you probably realize. As I've thought about this over the past 48 hours, I couldn't have gotten any better news. Yet (that’s the “but”), I'm still skeptical. Maybe it's a defense mechanism, maybe it's the realism in me. I've gotten good news like this before, only to be disappointed with a recurrence. The only real answer in my mind is time. Doctors begin to feel good at two years if there is no recurrence; they consider you cured at five years without a recurrence. Each scan taken going forward that is clean of disease will build on the great news that was started this week. I haven't come up with my long term plan, that too will take some time. For right now, I’m going to rebuild my stamina from the chemo and enjoy the respite.

I shared with you a story on Randy Pausch a week or two ago. He is the Professor at Carnegie-Mellon University with cancer who provided his, "Final Speech." There was a follow up article in the Wall Street Journal today. For those of you that are interested, here's the link.

http://online.wsj.com/article/SB119084081673940375.html

Stay well everyone.

Negative

I’ll cut to the chase. I spoke to my chemo doctor a few minutes ago. The results from yesterday’s CT with contrast scan were “negative, but complicated.” They were “negative” for any definite signs of cancer; that’s great news! The assessment is “complicated” by the many areas on the scans which are abnormal, but can probably be accounted for by the past surgeries and radiation. My doctor is going to contact the radiologist one more time today to confirm his initial finding and ask him to look closer at that area where there is small new lump on my face. I’ll talk to him again later this week. It doesn’t mean I’m cured, there is still the possibility of micro cancer cells that will eventually be detectable, but I could not have gotten better news today. There are many thoughts that are going through my mind right now. I’ll write a brief paragraph on each of them.

Negative. Since when is negative a good thing? Many years ago, about 30 (we were still kids), I got a call from my wife’s doctor. It was our home phone; there were no cell phones back then. I think she had just had a mammogram. The doctor said, your wife’s results are negative. Note, this is probably before HIPAA (Health Insurance Portability and Accountability Act – i.e., medical privacy) too. I was stunned. I said, what do you mean negative? Isn’t that bad? The doctor probably thought I was a complete idiot, but kindly explained that it was negative for disease and that was a good thing. I won’t make that mistake again.

What’s next (short term)? I asked my doctor this question. Given that there are no changes from the initial radiologist’s report, he said we may just want to watch that new lump area, maybe biopsy it (with an emphasis on maybe), and probably begin a monitoring program (e.g., periodic scans). No more chemo for now.

What’s next (long term)? By this, I mean getting back to my new normal. I wrote about this in the blog a month or so ago. Getting back to my new normal could take a few months, but then what? I may actually live. A little history refresher on my treatment and prognosis is in order. In May 2006, my surgeon did a laser surgery on me and could not get clean margins around my cancer. In July 2006, I had major surgery. My doctor said that without this surgery I would be dead within a few months. With this surgery, there was a 15% chance of a cure. It was a tough decision. The surgery disabled me physically, but I was “negative” for detectable cancer for 5 months, until December 2006. At that point, my surgeon mentioned palliative care. That’s where you go when they stop looking for a cure and focus on treating the symptoms and making you comfortable until you expire. He also suggested a re-visit with my chemo doctor. By the way, to be fair, my surgeon was not pushing palliative care, but he did mention it as an option. From December 2006 to September 2007, I have been on heavy toxic doses of chemo plus had one more surgery to remove the last detectable cancer spot. That surgery was in June 2007. Based on all this, I’ve been consumed by the high likelihood of death in the near future. Today’s scan result will make me rethink this. It hasn’t totally sunk in and I have some recovering to do from the chemo, but then what do I do? I'll need to give this some thought. When I have some answers, I’ll write about it.

Thank you again for all your good wishes and support.

Take care everyone.

Scan and Exam on Monday

It’s been a bit of a nerve racking few days. On Friday afternoon a new small lump appeared on my face. It wasn’t there Wednesday during my clinic visit with my chemo doctor. Like a noise in your car that isn’t there when you bring your auto in for repair. It’s about the size of a dime, although not round, and about a quarter inch think. It is right in front of my left earlobe. It could be nothing, it could be a small malignant tumor that will grow in size, or it could be something in between. My guess is that it is something and that something isn’t good. My disease has certainly impacted my optimism. Actually, I never really thought of myself as a true optimist, but more as a realist who tried to make the best of each situation.

I have a CT scan (not a PET scan as I had written a few days ago) of my head and neck areas and an X-ray early Monday morning. By the time most of you read this, I’ll probably have those behind me. I’m planning to stop in to see my doctor tomorrow after my scan/X-ray so that he can see this new growth and maybe put it into perspective when he gets the scan results in a day of two. Speaking of scan results, they're rarely ever definitive. There is usually a fair amount of qualitative assessment, at least that's my experience. So, while I may be in scan limbo today, it's possible, or probable that I'll be in post scan limbo once the results are in. Given this new lump, maybe that's the best I can hope for right now.

If it wasn’t for this latest development, I’d be feeling pretty good. I’m regaining my energy and feeling part way human after 9 months of chemo. The market is up and the Steelers are one of 4 NFL teams that are 3 and 0. I may have some decisions to make in the next few days. I’ll keep my fingers crossed for the best.

By the way, I haven’t said this in awhile, but for all those that are keeping up with me via my blog and sending their wishes and e-mails my way, Thank you.

Take care everyone. Enjoy the start of a brand new week.

Wall Street Journal Article

This was in today’s WSJ newspaper (see link below). I wouldn’t write about it here unless I thought it worth passing on. I’d suggest reading the article first and then watching the online video. It caught my attention because it had themes that are in common with my own life: Carnegie-Mellon University, Pittsburgh, Cancer, and even Cognitive Dissonance (I wrote about that concept in a blog entry a few weeks ago). It may also be a good lesson for all of us. Maybe we should all write our “Final Speech.” And as we age, we can refine or re-write it.

A Beloved Professor Delivers The Lecture of a Lifetime

http://online.wsj.com/article/SB119024238402033039.html?mod=home_personal_journal_left

For those that are interested enjoy the article.

P.S. Yes, I know I said yesterday that I probably wouldn’t be updating my blog for a week, but this really caught my attention.

Today’s Clinic Visit

This will be short, I promise. I saw my chemo doctor today. There was a low pressure pitch to get my last round of chemo for cycle 8. I decided I could not tolerate the potential side effects, so passed. I’ve said this before, there are no right or wrong answers here, even time will not be able to tell if this was the right decision to make. I have a PET scan being scheduled for Monday. My doctor will call me with the results by Wednesday. Ideally, they will be clean and if so, I can go into a monitoring mode. That would give me a chance to actually recover from 9 months of chemo. If not, we’ll have to move in some direction based on the scan results. I’m not expecting a clean scan, but I sure am hoping for one. My doctor is not convinced that the small lump we feel under my jaw line is cancer; it could be a result of the operation from June or a non-cancerous lymph node due to a low grade infection. The PET scan should provide insight and clarification on this lump.

That’s it for today. See, I kept my promise. I don’t expect to post again for about a week. There’ll be no news until next Wednesday and then I’ll need some time to digest it before writing about it.

Take care, be positive, and stay healthy everyone.

Cancer Center Clinic Visit Tomorrow

To catch you up on the side effects from my last chemo, they were one of the worst. I sent my chemo doctor an e-mail yesterday. Here is a portion of what it said…

“Thursday and Friday were horrible, as in the Texas Chain Saw Massacre movie type terrible. The worst was a severe migraine-type headache lasting 48 hours straight that no pain medicine seemed to have the slightest impact on (I even resorted to Advil on top of extra Hydrocodone and Xanax). In addition, my temperature was 2 degrees above normal, I could not get out of bed, I had nausea, my neck tissue was tight, and I had a heavy (but not fast) heartbeat. I was in so much distress that I wanted it to all go away, no matter what. I have some stronger pain medicine left over from my prior salvage surgery in July 2006 but am afraid to take them because they give me a headache… just what I needed to add to my severe migraine. Saturday and Sunday were better, but I was still feeling beat up. Today I'm mostly recovered. By the time I see you on Wednesday I'll probably look good and have energy as if none of these side effects ever happened. But, they did and I can not see how I could tolerate them again, almost no matter how good I feel and look on Wednesday. I'm hoping we can discuss other options (if there are any) when I see you in two days.”

That was the end of the quote, but not the end of the e-mail that I sent to him.

I know this is a war with many constituents (cancer, the treatment effects, and me) and war is never easy. But in the end, all sides are weakened by the fighting and one side usually wins. My doctor sent me a brief e-mail back, which I appreciate, saying that we would confer on my condition and options when I see him tomorrow morning. I hope there are some reasonable options. I am scheduled for chemo tomorrow, but I don’t see this as a reasonable option right now.

There was a large article in the Wall Street Journal today about medical insurance companies cracking down on approving payment for chemo drugs for cancer patients where the drug has not been proven for a person’s specific cancer, but whereas the drug has proven at least mildly successful in some similar type cancers. These chemo drugs I’ve been taking for the past 9 months are very expensive. They run $10 – 40K per month. So far, I have been very fortunate in that my insurance has paid for all of my treatments (surgery, radiation, chemo) minus deductibles and co-pays. Even these add up, but not nearly as much as an uncovered newer cancer drug. I’m reaching the stage of options where the use of an unproven cancer drug for my type of cancer may become the only viable reasonable option for me from a well established cancer institute. There are options, such as IPT, being offered by small cancer clinics. These too are expensive and it is unclear whether or not they would be covered by insurance. The kicker is that there are no guarantees in any case. It’s almost like buying a brand new car at a reputable dealer and it’s sold under the label “buyer beware.”

Well, that’s enough prattling on for this morning. I’ll fill you all in on my next steps within the next few days. Take care everyone.

Chemo Yesterday

Yesterday’s chemo treatment was worse than usual. Part of it was my mental outlook. I’m still fatigued from the last chemo round, my confidence that the treatment is actually working is low, the anticipation of the side effects (especially the migraine like headache that lasted 48 hours after the last treatment) was high, and needing two sticks to find the right vein put the icing on the cake. On top of all that, it was the 7th anniversary of my mom’s death to lung cancer. She died on September 12th 2000. I wrote this next part to my dad and siblings two days ago…

“I think about her at times. She had a good life and died with dignity in the face of adversity. Cancer is so terrible. It robs your body and leaves your mind intact. My mom was so herself 48 hours before she died, but she was ready to go. I said something to someone yesterday that in retrospect seems a bit dumb. I said I would probably go before I was ready. They said, isn’t that true of most people. It probably is.”

If she could see me and my spouse now, I think she would be saddened by the pain and suffering this disease has caused us. My mom went quickly, 6 months from diagnosis to grave. For us, at least today and the 2.5 years since I was first diagnosed, it feels more like death by a 1000 cuts. I’m looking forward to an improved mental outlook for me and those close to me over the next few days.

We did have some other visits in addition to chemo at the hospital yesterday. My thanks goes out to those doctors and researchers who spent some of their valuable time with us and who are looking for a cure to this insidious disease. Even if their work does not have application to me personally, I have to believe it will help those that come after me.

Chemo Tomorrow… Ouch!

Time flies when you’re having fun. Has it really been just two weeks since they last stuck a needle in my arm, 3 times? It seems like just yesterday. This will be the first of two rounds for chemo cycle 8. The next round will be the following week. I saw in my online schedule that my doctor has scheduled a cycle 9, but we had only talked about doing this through cycle 8, so I’m a bit dismayed by this showing up on my schedule. I’ll clear this up with him when I see him next week. I also felt a small lump and had some minor pain right where they did my surgery 3 months ago under my right jaw area for the past 4 days. The lump and pain are gone today, but that put me in a foul mood for a few days. I contacted my chemo doctor about it today and he said not to worry about it. For some reason, that made me feel a bit better.

I’m continuing to investigate the IPT approach that I wrote about 3 blog entries ago. I’ve begun talking to some doctors in the US who perform this therapy. I doubt I’ll do anything with it other than be prepared to go the next step prior to my scans and their results in late September. Other than that, it’s the SOS (same old stuff). Reading, watching golf (great match last Sunday), helping around the house, etc.

That’s it for today. Take care everyone.

Patience

Once again I was struck by how closely Leroy Sievers captured my own situation and feelings. I think he is on a very similar disease timeline with me as far as when I first got cancer and when his current cancer reoccurred. He was the one with the Ted Koppel special in May 2007 that prompted me to begin this blog. His blog is on the NPR website and can be reached at URL http://www.npr.org/blogs/mycancer/. I have taken his entry for today and modified it to my situation. He called his entry the “Tortoise and the Hare.” Consider this a mild form of plagiarism. But in my defense, he tells the story better than I would have.

I'm waiting. I'm in that weird period of limbo known as "between scans." I'm still healing from the operation I had two months ago and the chemo that I’m still going through. I'm still pretty sore and fatigued. So we're giving my body a chance to heal. Time to catch up and repair itself as best it can. In a few weeks, I'll have some new scans. Then it will be time to act. At least that's what I expect.

In December 2006, I had 5 cancer hot spots showing up on my PET scan. Chemo seemed to reduce or eliminate 4 of the 5 to undetectable levels and the fifth was removed via surgery. If the next set of scans show no hot sots or very small tumors -- then maybe we'll just continue to watch. But I doubt that's what we'll see. My cancer is pretty aggressive. I expect we'll see some new hot spots or a return of some of the old hot spots. Some of those were deemed to be in inoperable areas. And, of course, there's always the chance – maybe the likelihood -- that there will be new tumors somewhere else, too. At the time back in December 2006, I was encouraged to visit the palliative care unit. I didn’t know what palliative care meant at the time, but I know now. This is the unit where people go to die. They give you medicine to make you as comfortable as they can, but it is not healing medicine, it is comfort medicine like morphine.

In the meantime, I wait. Now, I'm not a particularly patient person. I'm used to instant gratification. I spent my adult life making project plans, leading large information technology teams, and making things happen… on time and within budget… or else, period. I was used to being in control. Used to being able to make a decision and have it implemented right away. Life moved on my schedule. At least that's what I thought at the time.

Things have changed. And so have I. I have learned patience, because I've had to. My life and my body no longer move according to my demands. I don't set my own schedule any more. And surprisingly, I'm usually okay with that. But then I guess, when you don't have a choice, you have no choice but to accept the way things are. I also credit the anxiety medicine with helping me reach this new state of acceptance and at times tranquility (or sedation). Being into yoga in my youth, and experiencing actual yoga trances, the anxiety drugs do remind me of some of these yoga experiences.

So I'm not counting the days to the next set of scans. But, I will soon push to get them scheduled since they are not yet scheduled. And if they find something, then we'll come up with a plan.

We were all raised on the story of the tortoise and the hare. Of course, most of us secretly sided with the hare, right? After all, the moral of the story, "slow and steady wins the race" is hardly the kind of line to fire the imagination or adopt as a motto for life. But it turns out that it's really true. This is a long race. It’s a marathon, not a sprint. There may still be a long way ahead of me although some days it’s hard to believe that. The tortoise was right after all. Who knew?

That ends the plagiarism and turns me to a new subject. A few blog entries ago, I wrote about a Insulin Potentation Therapy (IPT). Since writing that blog entry, I have reached out to three top major US cancer centers and the NIH about this therapy. I’m guessing that the cancer institutes that I reached out to are in the top 5 or 6 in the US if not the world. On one end of the spectrum, a well respected doctor with expertise in my specific cancer area called the therapy “absolutely ridiculous.” He said a patient of his almost died from the therapy. My cynical reaction was that people die from cancer and its therapies as well. On the other end of the spectrum, there were no active trials going on and the treatment was not in use at any of these facilities nor did any of them offer a referral to places that may be using this therapy. Bottom line, no endorsements. Even though cancer is huge business, I don’t subscribe to the theory that the drug companies or doctors are conspiring to keep a successful treatment out of the hands of needy patients. There are far too many dedicated doctors and researchers who want to find a solution to this insidious disease. So, I’m still balancing the discussion I had recently with a patient who believes this therapy (along with some oxygen therapy) saved his life with the cold shoulder provided by America’s top medical experts in my specific cancer field. I actually found a book dedicated to this therapy for sale a few days ago and ordered it from Amazon.com. I’m not sure I’ll learn anything more than the research I’ve already conducted on the web. I’ll let you all know what I learn as I skim its contents once it arrives.

Enough for today. Take care everyone.

The New Normal

Before delving into the main topic of this blog entry, I’ll provide a brief update on how I’ve been feeling since my last chemo round. Last Wednesday and Thursday (a week+ ago) was pretty tough. I had just finished round 2 of chemo cycle 7. I ended up with a huge headache and used my pain/anxiety drugs to help sleep it off. By Friday, I was able to function again and by Saturday, I was feeling pretty good. Since then, I took a quick, but wonderful trip to visit friends and relatives. The travel was a strain on me physically, but the reunion was worth the effort. Since returning on Wednesday, I’ve just been trying to take it easy and recuperate. I have some new pains in my neck and tongue areas, but they could be a result of my travels or they could be a cancer recurrence. That’s the thing with this disease, you just don’t know and it causes a great deal of anxiety.

Now onto today’s blog topic. I learned a concept in graduate school named cognitive dissonance. If you are not already familiar with the concept, here’s Wikipedia’s definition.

"Cognitive dissonance is the filtering of information that conflicts with what you already believe, in an effort to ignore that information and reinforce your beliefs. In detailed terms, it is the perception of incompatibility between two cognitions, where "cognition" is defined as any element of knowledge, including attitude, emotion, belief, or behavior. The theory of cognitive dissonance states that contradicting cognitions serve as a driving force that compels the mind to acquire or invent new thoughts or beliefs, or to modify existing beliefs, so as to reduce the amount of dissonance (conflict) between cognitions."

What does that have to do with me and this disease? BC (before cancer), I had a concept of myself. I’ll call that the “normal” me. During the first 15 months of treatment which included 3 or 4 surgeries, 35 radiation treatments, and some fairly intense chemo, I did everything I could to maintain the “normal” me. That included working, traveling, socializing, etc. I did some of these things even though they were tough to do because if I didn’t do them, then cognitive dissonance would kick in and make me feel not “normal.” The feeling of being not normal would cause cognitive dissonance. That would drive me back to behaviors which would make me feel normal again. For example, after a neck dissection surgery where they removed 17 lymph nodes from my neck on a Thursday afternoon, a fairly significant operation, I went back to work the following Monday. I had chemo treatments on Friday afternoons, Saturdays, and Sundays so that I could continue working a normal work week. I lost my hair, I lost weight, but still I continued to host client and work meetings and continued with business as normal. I think you get the picture. After my main surgery in July 2006, I knew I would have to come up with a new normal. By December 2006, I came up with that new normal. I was eating without a feeding tube, talking at about 85% of my BC capability, and exercising regularly. I had the new me and was considering going back to work in early January 2007. I’m now struggling again with what this chemo is doing to me and the new normal. My speech capability has probably dropped to 60% of BC due to tightness in my neck tissue or muscles. I’m usually too fatigued to exercise, and eating takes longer and is more difficult. So, once again I’m struggling with cognitive dissonance. Anything that reminds me of why I’m not the new normal makes me feel uncomfortable. The impact is less social interaction, in that way I don’t have to talk and be reminded that I’m not normal. It is eating alone, that way I don’t have to be reminded of what it was like at one time to feel well enough to enjoy a meal with others. This disease has taken a lot from me and those close to me. One of the reasons I like e-mail so much is it makes me feel normal. It allows me to communicate with others in a way that is comfortable. So, if I don’t return your calls right away, please understand why that is. Cognitive dissonance is a very strong emotional driver.

Well, enough about cognitive dissonance. I am getting a bit bored, but I’m still not feeling well enough to be able to make any commitments which involve work. I define work as having to be somewhere at a definitive time and deliver results in line with time and budget expectations. I continue to read, be a chauffeur when I can for our daughter, help her with homework, care for myself, research various cancer treatments, and watch the FedEx cup playoffs. I really enjoy watching Tiger Woods and K.J. Choi. They played in the same grouping today and due to a three hour rain delay, most of their play was on TV. But, it’s not enough. I’m still too weak to exercise, travel is out of the question, and I’ve lost interest in the pottery because I can only throw pieces and not finish them. I’m really hoping that when this chemo ends in 3 weeks (plus add another few weeks for recovery) and the scan come back negative (I’m not really all that optimistic about this, but I am hoping for the best), I’ll be able to get back to the new normal me and will be able to comfortable get back to those activities which I enjoyed last December.

That’s enough rambling on for today. Take care everyone.