December 13 2008

Two years ago on December 13 2006 I received terrible news of a major cancer recurrence. Last year on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, against big odds, here I am. Health wise I should be thankful. I have had no evidence of disease for 14 months. I feel thankful, but not without reservations. This disease/treatment (yes, I’m still on chemo and other medications) has zapped my energy and makes me feel like I have the body of someone 25 to 30 years older than my actual chronological age. It’s wearing and frustrating. On the other hand, I’ve had some great experiences this past year. I’ve enjoyed good times and visits with family and friends. I’ve seen a few good movies and read some terrific books. I’ve been trying to think longer term, but am currently stuck in somewhat of a physical and mental rut. One doctor this year said I was being too hard on myself. Her intensions were good, but it angered me (you probably had to be there) and pushed me to an improved state. This past year has been better and easier than the year before. I’m committed to figuring out a longer term plan for myself next quarter and making 2009 better than 2008.

Enjoy the holidays. Thanks for checking in and take care of yourself.

"Routine" Checkup Report

I saw my chemotherapy and supportive care doctors earlier today. Based on my physical exam which included blood work and vital signs accompanied by a decent amount of poking, prodding, and listening, they say I'm in good shape. That makes it 13 months with no evidence of disease.

My chemo doctor does not want me to start back up on the Avastin. I'm okay with that for now. My next appointment will be scheduled for January and my next scan with be in the January / February time frame.

After talking to my supportive care doctor and her team about my current concerns, they gave me some tips and thoughts on how to transition from a full time cancer patient to a new healthier normal from a mental perspective. I'm taking their wisdom and experience under advisement... in plain English, that means I'm thinking about it.

Take care.

More Medical Marvels

Here’s something you don’t see everyday. A team of doctors and researchers used stem cells from a patient’s own bone marrow to grow and then implant the new wind pipe in the patient. The beauty of this is that the host body (in theory) will not reject the transplant due to it coming from the cells of the host. This was done in 2005 and the results so far have been successful. See URL…

http://www.msnbc.msn.com/id/27790019/

This ties into a political marvel as well. President-elect Barack Obama said early last week that as soon as he took office he would void the Bush presidential directive banning federal funding for stem cell research. I know many people view the issue (embryonic stem cells) behind the issue of stem cell research difficult, but I applaud our new president for his swift action on a prior executive decision that I personally found unconscionable. How many lives could have been saved if federal funding for stem cell research had been provided during the Bush years? We'll never know.

I’m at my cancer center today. It is in some ways my first “routine” checkup. I hope it stays routine and will provide an update within the next few days.

Thanks for checking in and take care of yourself.

Medical Marvels

Here’s something new in the field of treating head and neck cancer. The November 8 2008 issue of The Economist magazine had an article on the use of nano particles being used in human trials at three Texas medical centers for treating head and neck cancer. 80 trillion particles are injected into one’s blood stream and they find their way to one’s tumor leaving your healthy cells alone. They find your tumor based on the unique properties of the tumor’s blood capillaries. The nano particles are then heated and the tumor dies. The article goes on to say that in lab experiments on mice the tumors disappeared in 10 – 14 days without any noticeable side effects. Here’s a link to the article…

http://www.economist.com/science/displaystory.cfm?story_id=12551598

It all sounds so promising. I hope we hear more about this as the human trials unfold.

As for me, things are okay. No new health issues. To wrap up a loose end from an earlier post, my health insurance company contacted me today and agreed to pay for my ongoing Avastin chemo treatment. It took a great deal of work on my part (with help from a few family members – THANK YOU) to educate the insurance company about my case and their contractual commitment. On the negative side, the action of my insurance company two months ago disrupted my then ongoing chemo cycle. What this means to me is if my cancer does come back, I’ll never know if it was due to this disruption, but I’ll always wonder. On the positive side, they did the right thing by now agreeing to continue with the treatments. It will be interesting to see if my doctor wants to go back to my prior chemo regimen or continue with the current wait and see approach. I’ll take his lead on this.

That's it for today. Thanks for checking in and take care of yourself.

Fixing Myself - One minor ailment at a Time

I actually felt good today. Not just physically good, but also almost free of anxiety. Cancer brings on a lot of anxiety. Every ache and pain feels like a cancer recurrence. Two weeks ago I began the journey of trying to understand every physical issue that was bothering me. It’s a long list and I’m going to talk about each one. So, for those who don’t really want to read about someone else’s minor health problems, there is no need to read any further. But, for those of you that are in my situation or are helping someone like me, this may actually be instructive. In order of what has been bothering me physically, here goes. 1) A change in vision. 2) Lateral arm movement and shoulder pain. 3) Fatigue and always feeling cold. 4) An acute pain in my jaw that seems to happen about once every 4 months and lasts for 24 hours. The mind plays funny tricks on cancer patients. Being paranoid is not too strong of a term to describe it. Every one of these could be caused by some serious disease. I decided to attack each of these individually two weeks ago and to get some answers.

1) Vision – I had my eyes checked. My prescription glasses had not changed in decades. My eye doctor confirmed following my exam that my vision had deteriorated a little, but he saw no signs of eye cancer or eye nerve cancer. He prescribed a new pair of glasses in the 20/40 range. My anxiety about my eyes is now gone. I also have a new pair of glasses and my vision with glasses is 20/20.

2) Lateral arm movement and shoulder pain – I visited my family doctor. It was my first visit with him in over 3.5 years. I told him my concern about ALS (Lou Gehrig’s disease) or MS since it was attacking both arms and shoulders in a similar fashion. I asked to see a neurologist. He suggested an orthopedic surgeon. After listening to his reasoning, I agreed with him. I saw the orthopedic surgeon. He first did a full set of shoulder x-rays. Based on those findings he did an extensive MRI on each shoulder. We then discussed the results. He sees a slight tear in the tissue between my ball and socket in the shoulder on the right side and stiffness in both. Although he can’t rule out MS or ALS with this type exam, he felt strongly based on other patients that this was an orthopedic problem and not a neurological issue. He thinks a 10 minute procedure under light anesthetic, some shots into each shoulder and forcing a breakup in the stiffness via arm manipulation in each shoulder would do me wonders. I’m not ready for that, but I’m now anxiety free about this being a serious disease.

3) Fatigue and always feeling cold – I’m still on a daily chemo pill. My last chemo IV was August 18th (2.5 months ago). I really thought I should be feeling much better than I have been lately. While visiting with my family doctor he did some blood tests. He called and said one test showed a slow thyroid. My TSH (Thyroid Stimulating Hormone) was at 15. It should have been between .5 and 5. There is an inverse relationship between the count and a hyper versus slow thyroid. The higher the count, the slower the thyroid. I looked up “slow thyroid” on Google. The first sentence in the first site I visited said the primary symptoms of a slow thyroid were fatigue and feeling cold. I began a thyroid replacement medicine yesterday. They say it could take a few weeks for it to kick in. But, I’m no longer anxious about these symptoms. This is a very plausible explanation. One other point on this issue. When I received radiation treatment in mid 2005, my radiologist said that the radiation could actually cause thyroid problems and possibly even thyroid cancer 20 years down the road. At the time, I understood the risks and went forward with the treatment plan.

4) An acute pain in my jaw – I visited a local ear, nose, and throat doctor referred to me by my family doctor. Although my care at MD Anderson is superb, I wanted a really fresh set of eyes on this and a few others facial pain issues. After listening to me describe my symptoms, he described TMJ. TMJ is basically a facial muscle pain that can bring on the exact pain I was feeling. It is caused by trauma to the jaw which could be the result of an accident or surgery. We also talked about a way to address chronic pain left over from my July 2006 surgery. It is a nerve blocker medicine. If this nerve blocker medicine works I could then begin reducing and maybe even eliminating some of the stronger pain medicines that I take daily. I began this new medicine today. It too will take a few weeks to figure out if it works. Again, with a plausible explanation for the acute pain, my anxiety level is far reduced.

Here are the lessons to take away from the above. Break the problem down, address each methodically, seek appropriate specialists, and be proactive. I can’t tell you that there is not something seriously wrong with me. But today, I feel like a real weight has been lifted off of me for the first time in over 3.5 years. I don’t know how long this optimism will last, but it is so very welcome. I’m looking forward to the physical results of these new drugs over the next few weeks.

I hope this was helpful. That’s it for now. Thanks for checking in and take care of yourself.

Scan Results

I’ll make this brief. The scan results for both my chest and head & neck showed no evidence of cancer. My next appointment will be in 4 to 6 weeks for a follow up. The last detectable cancer was removed from my body surgically on October 18 2007. That means I’m half way (1 year) through a period of “no evidence of disease.” If/when I hit the two year mark at this time next year without a recurrence, it will mean that I’m in remission. I think this is a great thing. But, as Gust Avrakotos (played by Philip Seymour Hoffman) in Charlie Wilson’s War said of the Zen master's statement, “we’ll see.” I’m just recently beginning to think longer term. More on this later as my thoughts and plans crystallize.

That’s it for now. Thanks for checking in and take care of yourself.

Scan Day is Over

Hi. Another day, another scan. Yesterday went well from a timing standpoint. I left the house at 5:45 AM and beat most of the downtown Houston traffic. I had my blood drawn at 6:45 AM, a chest x-ray at 6:55 AM, and CT scans of the chest and head & neck (H&N) at 8:00 AM. The scan ended at about 8:30 AM. I then checked in for my clinic visit with my oncologist. At 9:30 AM my vital signs were taken and at 11:00 AM I saw my doctor. The preliminary scan from my chest CT was negative for disease. By preliminary, this means my oncologist’s interpretation, but not the radiologist review and sign-off. My oncologist did not feel qualified to give me a preliminary interpretation on the H&N scan. With the scar tissue from all the surgeries, he wants to leave that review up to the professional, the radiologist. The physical exam was clean; he thought I looked great. Here’s my point. Although scan day is over, it will be a day or two or three until the scan results are in. I’m mildly apprehensive and will bide my time until the news from my scan results are communicated to me. When that happens, I’ll share them on this forum.

Regarding the insurance issue presented in my prior posting, my doctor readily agreed to write an email to my insurance company articulating why this drug regimen (Avastin), which my insurance company denied covering for future use, should be covered. He hopes to send me that email within the next few days. The more I research this issue, the more strongly I feel that what the insurance company did was a direct breach of contract. I plan on submitting my own research along with my doctor’s assessment to my insurance company next week. This is the last step in the appeals process before civil litigation can begin. Depending on my insurance company's response, I'm reluctantly prepared to head down that road. Barack Obama has mentioned a few times how he saw his mom fighting with her insurance company while she lay dying in bed of cancer. I now know how she felt. Fortunately, I’m in better health than she was when this dispute happened and therefore have the strength and resources to fight it. But, it does raise a lot of ethical questions about insurance companies, drug prices, and even how much in dollar terms one’s life is worth. Because, in the end, it is not really about right and wrong, it is all about the money. And, in these tough economic times, who isn’t looking at their bottom line.

That’s it for now. Thanks for checking in and take care of yourself.

Scan Day and Insurance Issue Continued

It’s almost that time again. I get a new scan this coming Wednesday on 10/15/08. It will be a CT scan of the head and neck using contrast. I’ll also get blood work and a chest x-ray. My tests will be followed by a clinic visit with my oncologist (hopefully he’ll have some preliminary good news from my various tests) and then a visit with the Supportive Care unit. It’s going to be a very very long day. I have a few new ailments which are bugging me. My vision has changed and I have a bump on my finger. Without cancer, both of these would be totally trivial. A visit to an eye doctor and my family physician would more than likely alleviate any concern. But, with cancer, every ailment, no matter how remote or trivial, takes on a greater magnitude of anxiety.

Other than my tests and clinic visit, I’m going to try and enlist my oncologist’s support to help fight my insurance company. Although the insurance company did the right thing by paying for all past chemo treatments, they did the wrong thing by denying payment for future use of my most recent chemo regimen. Here’s the problem. Chemo drugs are approved by the FDA for specific cancers. The drug companies target the common cancers because a drug which helps fight lung cancer (215,000 new cases per year) for example will have more customers than for non-common cancers. “Common” cancers are defined by the American Cancer Society as cancers which have 35,000 or more new cases per year. There are 13 of them (see reference 1 below). Head and Neck (H&N) cancer is not one of the 13. Since H&N cancer is not high on the cancer hit list, the number of drugs actually approved for its treatment is limited. However, once a drug hits the market (i.e., it has been approved by the FDA), doctors have a fairly high degree of discretion in prescribing that drug to treat other types of disease. Many of the professional medical people with whom I talk believe that H&N cancer cells behave in a similar fashion to those of lung cancer cells. So, when they exhaust their use of cancer drugs approved for H&N cancers, they may turn to lung cancer drugs. This is considered off label drug use. Drug companies are not allowed by law to market drugs for off label use, but doctors are allowed to use them for off label use when they believe they are medically necessary. That is what my doctor did for me back in December of 2007. But, my insurance company decided unilaterally to put a policy in place on 7/15/08 that made the use of this particular drug, Avastin, no longer reimbursable for off label use. What this means is that someone who has never met me and has only a superficial knowledge of my case is denying payment for future treatment when the chief of Head and Neck Oncology at one of the best cancer hospitals in the world has determined that this drug is medically necessary to treat my disease. The insurance company knows that research and drug funding for H&N cancers are minuscule when compared to the common cancers and that proving that a cancer treatment is useful for a specific cancer is a very expensive proposition. So, since my insurance company’s unilateral decision may have an impact on my future treatment and literally my life, I’m going to take my case to my oncologist and see if he will assist me in helping the insurance company see this situation from my perspective. My insurance has been good to me up until this point and I’m not out to make a national issue out of this. But, remember, this could happen to you. You’ve worked many years, you’ve paid insurance during all those many years and one day your insurance company says… you’re not covered even though your health plan documents say you are and your highly qualified medical professionals say this is your best chance at survival. This is scary stuff folks and should be taken seriously. On top of all this, I don't want to waste my oncologist's time with my insurance issues. I would much rather see him curing cancer. If anyone out there has any tips for me in this situation, please post them or send them my way.

That’s it for today. I’ll let you all know the scan results as soon as they have been finalized. Thanks for checking in and take care of yourself.

Reference(s)
1. http://www.cancer.gov/cancertopics/commoncancers

Current Status and Insurance Issue

Hi. It has been awhile since my last post. Here’s what’s happening. I finished my Avastin chemo treatments on August 18 2008. That was my 11th and last treatment for this drug. My doctor had originally wanted to go with a 12th treatment on September 17 2008. Those plans changed when my health insurer decided they would not pay for it, the high cost of the treatment, and my doctor deciding that 11 was the lucky number. It’s actually a bit more complicated than this, but I felt okay with the outcome. I’m scheduled for my next scan on October 15 2008. I’m trying not on focus on that set of tests while hoping for the best and preparing for the worst.

I had a significant insurance issue that began 3 weeks ago. The issue is now resolved, mostly to my satisfaction, but it created a high degree of anxiety. Here it is in a nutshell. My insurance company paid for my first 9 Avastin chemo treatments. Before beginning these treatments, my doctors checked and said my insurance would cover them. I was always a bit bothered by how expense each treatment was. On 9/8/08 I received an Explanation of Benefits letter from my insurance company that excluded the Avastin drug that they had previously paid for 9 times. The treatment for the drug delivered on 7/16/08 (my 10th treatment) was not covered. Upon calling my insurance company, I was informed that they would not pay for my prior treatment on 8/18/08, nor any future treatments with this drug for my type of cancer. After carefully reading my 370 page health SUMMARY plan document (get it, 370 pages is the summary), I came to the conclusion that this treatment was definitely covered. It was a chemo treatment and an FDA approved drug. I called my insurance company and after a few discussions came to find out that they put a new internal policy in place on 7/15/08 (one day before my denied 7/16/08 treatment) that excluded coverage of this specific drug for off label use. They told me I could find it on their website under “Providers,” under “Policies,” and then searching for some obscure drug code. After a dozen phone calls, emails, faxes, etc. later, over a 2+ week timeframe, my insurance company decided to do the right thing and pay for my 10th and 11th treatments. I think they reached this decision based on paying for the first 9 treatments and not providing any notice as to a change in their internal policy. The power that they have to place a new policy into effect for a specific drug that is clearly inconsistent with the 370+ page summary plan document is downright scary… as if people don’t have enough to worry about these days. There were many restless nights filled with stress and high anxiety around this whole experience. The lesson learned for me in this is to confirm all expensive treatments in advance directly (and by that I mean directly and take names, dates, and notes) with my insurance company.

On a more positive note, I’m feeling relatively well, continuing to work on my speech by practicing talking in front of a mirror, trying to enjoy each day, and doing some projects around the house. If this upcoming scan is clean and then the scan after that is clean (January 2009), I will begin thinking longer term.

That’s it for today. Thanks for checking in and take care of yourself.

Wow!

Although Leroy Sievers has left us, his NPR blog lives on. If you haven’t already seen today’s (08/27/08) blog entry, it is really worth the trip. http://www.npr.org/blogs/mycancer/. It was written by his oncologist, Dr. Joe Herman. Dr. Herman provided wisdom that all patients (cancer and otherwise) should take to heart… ask questions and understand your options and consequences.

Reading Leroy’s blog today prompted me to write the following paragraph. The standard of treatment is constantly changing. What wasn’t a standard last year may be a standard today. In an ideal world, the most successful treatments would be adopted by all medical professionals immediately. But we don’t live in an ideal world and the time to adoption is not instantaneous. Take the time to research your condition and then come prepared when you meet with your doctor to ask the tough questions, push the envelope, and understand your options. Good doctors will listen to you, provide honest feedback on your queries, and most important, respect your wishes. In Cancer World there are not always clear cut results and directions. It’s no different than many other decisions one has to make; moving forward with imperfect or the lack of full information. Much of what happens in Cancer World is outside of one’s control, but that leaves a portion which is within one’s control. As a patient, it’s your life and you have the obligation to yourself to take the initiative and exercise that which you can control.

My hat is off to Dr. Herman for writing so powerfully today about the role a patient can take in his or her own treatment.

Take care everyone.

Appointment Scheduling

About a year into my cancer journey I decided to spend as little time and make as few trips as possible to the cancer center. Life already felt shortened. I can’t imagine my tombstone inscribed with the words, “I wish I had spent more time traveling to and being in the cancer center.” Please don’t get me wrong, there are great, dedicated, generous care givers and professionals at the hospital; I’d just rather be some place else.

My next set of appointments is in mid September. I have 6 appointments. Up until yesterday, they were spread over 3 separate trips within a 10 day period. It took some work (many emails and some diligence), but I now have all 6 appointments scheduled on the same day. It will begin with a blood draw, then a trip to dental oncology to assess my mouth device (which is working out great by the way), followed by a visit to the oncology clinic, a post surgery checkup, the supportive care unit, and then chemo. Sounds simple doesn’t it? Some appointments may start late and as a result others may have to be rescheduled, but the plan is to knock them all out in a single day.

The truth is that although I’m not really in charge, some days it feels like I am, and that makes me feel good.

Take care everyone.

Pain Management

One thing that you learn from cancer is pain, pure and simple. I’m quite sure that my physical pain threshold has increased 2 to 3 times over the past few years. We’re constantly being asked by our medical professionals to rate our pain on a 0 to 10 scale with zero being no pain and 10 being the worst pain imaginable. The pain may be due to the cancer, the treatment, a weakened immune systems, growing older or any combination of these factors. With pain comes the business of pain management.

I had some success with a new medicine this weekend. Last Monday, the Supportive Care group at my hospital prescribed a new medicine to treat severe headaches. These are not “take two to four Advil and go about your business” type headaches. These are “48 – 72 hour stay in a dark room with low light, no noise, and a cold wash cloth on your forehead” type headaches. I’ve tried many different medicines to treat these headaches in the past. Both over the counter and prescription drug opiates. Nothing helped… until yesterday. I took a drug for migraine headaches and 90% of the headache went away. I ended up taking two doses about 6 hours apart. This medicine allowed me to read 200 pages in a great book (Bringing Down the House – the book the recent movie 21 was based on), watch a little TV (the final installment of “Generation Kill” on HBO), play a few games with my daughter, and even have a brief visit with a friend. Compare that to lying in bed with pain and I’d have to call it a success.

I was very hesitant to try this medicine. The possible side effects scare me. Here they are. “CONTACT YOUR DOCTOR IMMEDIATELY if you experience wheezing, tightness in your jaw, neck, or chest; chest pain; heart throbbing; unusual vision changes or loss of vision; severe stomach pain; or bloody diarrhea.”

It’s one thing to sign the consent forms at the hospital before an operation or a new chemo regimen with all the possible side effects including death, but to do it at home with an unknown medicine freaks me out.

The moral of this story is to continue to work with your medical team to make the most of what you have. Maybe you too with be fortunate enough to find a treatment that will make life easier, even if for one day.

Take care everyone.

Leroy Sievers

Another member of the cancer family has left us. Leroy Sievers at age 53 passed away on 8/15/08. Here's a link to his NPR blog site.

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

Leroy and the community he created with his blog taught me that life is short and to enjoy each pain free day.

Here are links to Leroy's obituaries in the Washington Post and New York Times:

http://www.washingtonpost.com/wp-dyn/content/article/2008/08/18/AR2008081802190.html

http://www.nytimes.com/2008/08/19/arts/television/19sievers.html?_r=1&oref=slogin

Take care everyone.

Me and My Cancer

I won’t keep you all in suspense with the blog title; I’m feeling good, my cancer had not returned. But, I’ve been having some trouble getting a good night’s sleep lately despite the medications that have worked so well up until now. I seem to wake up at 2:20 AM each morning and then have difficulty falling back to sleep. This morning at 2:20 AM I started thinking of that old song sung by Perry Como, “Me and my Shadow.” It’s a sad song and just like my shadow, the cancer never seems far away. Sometimes it’s there, sometimes it’s not. And, even when it’s not there, I know it will return.

I’ve mentioned this before, but feel it worth repeating. My current status is “no evidence of disease (NED)” and I’ve been in this status since October of 2007. I think they used to call this remission, but now it’s NED. Remission will begin when I’ve been in a NED status for two years straight. At the 5 year mark, they considered you cured. For me, that would truly be remarkable!

Since I’ve been feeling well, I’ve been enjoying myself with visits, friends, family, and even some short trips. In July I took my 2nd plane trip in 19 months; the 1st plane trip was early this year and left me in bed feeling ill for weeks after I got home. This compares to a before cancer state of traveling about twice a month. Not that there is any question (or any choice), I’d take the before cancer state every time.

For those of you that follow Leroy Sievers periodically at the NPR website, http://www.npr.org/blogs/mycancer/, he’s been having a tough time of it. It sounds like he is having trouble moving around the house, getting rest, and is thinking seriously about hospice care. My best wishes go out to him, his family, and support network.

Enjoy yourself. Life is short. Take care everyone.

Randy Pausch

Life for another member of the cancer family came to an end today according to this article from Bloomberg.

http://www.bloomberg.com/apps/news?pid=20601103&sid=a0cfNQ5UPl2o&refer=us

Randy was diagnosed with pancreatic cancer in mid 2006. He became famous when he delivered his "Last Lecture" at Carnegie-Mellon University last September.

I read his book which was given to me as a gift recently. The book far exceeded my expectations. After all, who needs yet another book about cancer. But, the book wasn't about cancer. It was about how he realized his childhood dreams. There were many excellent life lessons in the book.

It is also a grim reminder that no matter how smart, rich, popular, loved, innovative and determined you are to beat this disease, sometimes the disease wins. Randy left a terrific legacy for his 3 young children by leaving behind his story such that he might be able to guide them as he would want as they grow older.

Take care everyone.

Chemo Cycle 9 Round 10

Yesterday was my 10th round of chemo cycle 9. For the sake of clarity, that means that this is my 9th chemotherapy drug (or drug combination) and yesterday was the 10th administration of that drug via an IV. This cycle counting does not include the chemo pill that I take daily. To say that they have thrown everything at me including the kitchen sink would be an understatement. But, it seems to be working. The pain that I had and wrote about last Friday subsided on Saturday. I talked to my chemo doctor about it yesterday. I see him in clinic before each chemo round. He wants to make sure I’m still healthy enough to proceed. He said I looked great and although the pain was bothersome to not worry about it. There are no new lumps and bumps so the chance that an ultrasound would turn up anything was too slim to warrant the test. It was a long day yesterday. I waited a little over two hours to see my primary chemo doctor and then almost 5 hours after that to have the chemo orders get from the chemo clinic to the chemo room with the medication. Needless to say… a lot of waiting. Waiting is just part of the “living with cancer” protocol. One gets used to it and makes the best use of their time as the clock tics.

The plan: Two more rounds of this chemo, then another scan (maybe one that covers the full body versus just the head and neck area). That will place me in the mid-September timeframe. If that scan is clean, then I’m pretty sure my doctor will want to stop the chemo. If it’s not clean, that means the effectiveness of this chemo has reached its limits and we’ll have to regroup. At this juncture, that seems like a good plan.

Chemo factoid: Most of you probably thought, as I did until recently, that the chemo drugs are mixed into a liquid solution by the pharmaceutical companies and delivered to the hospital. The reality is that the drugs are delivered in powder form to the hospitals and the pharmacy mixes them based on the exact prescription supplied by one’s doctor. The doctor takes into consideration the patient’s weight, health, side-effects, tolerance, and drug goals in determining how much medication to deliver in each round.

Take care everyone.

Am I Angry?

This is one of the benefits of having good friends or others that are close to you. They ask the really tough questions. They are questions that others may be thinking or wondering. Or, if they’re not close or they haven’t given it much thought, it’s not even on their radar. I’ve had a good three weeks until today. Today, I woke up with what feels like a pinched nerve in my jaw/cheek area (very close to the location of my most recent tumor removal) and it’s causing pain (electricity like) across the low left side of my face, jaw/teeth numbness, and most importantly a high degree of anxiety. I was with a friend today and he asked me how I have dealt with all this cancer stuff (he said it a little more diplomatically). I explained that it was frustrating and at first denied that it made me angry. But, with a few minutes reflection, I said, you know what, it does make me angry, it has robbed me of much of the happiness in my life. It should have been a glorious day. We were playing golf. The sun was out. It wasn’t too hot. The course was beautiful and in great shape. There was no one holding us up in front. There was no one pushing us from behind. My golf game was reasonable given that I only began playing again last month after almost a year off. I had some terrific shots. But, I was angry and annoyed by this new pain.

It ruined a perfectly beautiful day.

Is it a new tumor pushing again a facial nerve? Is it a new tumor growing on a facial nerve? If it is, what will they recommend? Will it be surgery that will cut a major facial nerve? The thought of that is too depressing to think about. I’ve been fortunate compared to others and have escaped major deformities. This would surely lead to some deformities, plus more difficulty talking and eating. Both of which are already difficult. My next clinic visit is Wednesday. I’ll ask my doctor what he suggests. I’m thinking an ultrasound of the area may provide some insight followed by a biopsy if the ultrasound turns up any suspicious areas. Or, maybe it will just go away. Wouldn’t that be nice.

If you haven't seen the "Bucket List" with Jack Nicholson and Morgan Freeman, I recommend it. It's about how two people live through the last year of their life with cancer. At one point during a difficult treatment period, Jack Nicholson says, "some lucky person out there is having a heart attack." It's sad, funny, and ironic all at the same time. They did some good research for this film.

Take care everyone.

Physical Therapy

I began working out on a more regular basis about 2 months ago. By more regular, that means 1 to 3 times per week. I used to work out every other day and am trying to build back up to that both physically and emotionally. I noticed a few weeks ago that some of my muscle groups had atrophied. This included my shoulder muscles and the strength in my right leg and hip. My other muscle groups: arms, abdomen, neck, etc. seem quite fine. I visited with my physical therapist yesterday. She took about 50 – 75 measurements on range of motion and strength. She’s been doing this for about 20 years and is excellent. She confirmed scientifically what I had been feeling physically and is now working on an exercise plan to strengthen areas in need of help. The question of how this happened will go unanswered. My guess is a combination of the lengths of my immobility (caused by the disease and treatments) and the chemo drugs.

What I’ve learned through all this is to not ignore persistent symptoms, even those that one can work around or are not that painful. If you need help and have the resources to get it, there’s no reason to put it off.

Take care everyone.

Thank you…

for all the well wishes… phone calls, emails, and visits regarding my scan results. We’ll be playing a balancing game from here on out with my chemo regimen. I suffered a severe debilitating headache on Thursday and part of Friday. Probably chemo related, but one never really knows. I can live with a headache for 2 days a month for a long time if it were to mean that the cancer would not return. But, no one really knows that either. I’m currently scheduled for 3 more chemo treatments 4 weeks apart. That will bring us to mid-September. At that point, we’ll reassess my health and options and go from there.

Take care everyone.

Scan Results

I had my CT scan yesterday, June 17th. My daughter joined me for the day at the cancer center. Her company was my father’s day gift. She got me some other neat stuff, but her joining me for a day at the cancer center was the gift I asked for. She got to see me wait, then blood drawn, then a peak behind the curtain at a cancer research lab, then waiting, then waiting some more while I had an IV put in and the CT scan taken. The IV is used to shoot iodine into my veins and acts as a contrast during the scan process. It was about 7 hours start to finish. It was a typical day for me at the center and hopefully a bit of an education for my daughter.

It's now June 18th and I’ve been waiting for an hour and a half to see my oncologist and hear the news of yesterday's scan results. I’m apprehensive. I’ve been feeling good lately, but that doesn’t provide much of a leading indicator as to the actual scan results. Feeling bad would be an indicator. But, feeling good is neutral in my book. I feel like flipping a coin or something as I wait. Heads I’m good, tails I’m bad. I just looked for a coin and don’t have one on me. I’ll see if I can borrow one from someone. One of my nurse friends had a quarter. I flipped it and it came up tails. I shouldn’t have done that. Now I’m even more apprehensive. This waiting is killing me. Tic, tic, tic. I’ll write more in a little while.

It’s now about 20 minutes later and I just met with my doctor’s physician assistant. Stupid coin toss. It was wrong. The preliminary scan results came back and said, “There is no definitive evidence of tumor recurrence.” That’s the best news I could hope for. With all the surgeries and scar tissue, the scans are difficult to interpret. But, any other news would be bad news. So, there you have it. I’m going to continue chemo for another 4+ months depending on my tolerance to the drugs. It’s been working so far and we’d rather err on the side of caution. My surgeon and oncologist, plus a friend in the lab, are almost as excited about this news as myself. It’s not time to say “we won,” that flag won’t be flown until I’m out 2 years from my last cancer recurrence in October 2007. This does however allow me to begin thinking longer term. So, stay tuned.

Thanks for checking in and take care everyone.

Drug Side Effect

I called the Supportive Care unit at my cancer center yesterday. I wanted them to know my vision had become slightly fuzzy over the past week or two and wondered if that was a side effect of my new medication and if so, was it serious. They were surprised that I was having this side effect at such a low dosage (it is more common in higher doses), so they asked me to stop taking the medication to rule out other causes for the blurred vision. I stopped it last night and this morning my vision is back to normal. I’ve decided I’m pretty susceptible to many drugs; maybe that was why I had an allergic reaction to Cetuximab a year+ ago. Well, eye vision issue probably solved. I’ll wait a day or two more to make sure.

Stay healthy and take care everyone.

Scans, Depression, Leroy Sievers, and Lee Child

Hi. I’ll comment on a few subjects today. They may seem somewhat random, but they are all on my mind.

1) Scans. I have a CT scan on June 17th. I’ll get the scan results the next day. I’ve been feeling relatively good since beginning my antidepressant medication on May 21st (almost three weeks ago). But, I’m also a bit anxious, especially after reading Leroy’s blog entry today. At this point, I’ll just have to wait, hope, and see.

2) Depression. It’s an odd disease. A friend of mine had severe depression and told me about it, but one doesn’t comprehend what it is (at least I didn’t) until I had it. For anyone out there who is depressed (or thinks they may be depressed), get help! What could it hurt to talk to a professional and try assistance? Different therapies will work better than others for each individual. They range from counseling, to medication, and a combination of the two. If you had a headache, you’d take aspirin. If you sprained you ankle you’d see a doctor. So, ask yourself why depression should be treated any differently. See a professional this week. Make it happen. BTW – per my last post on May 22nd, the drug I’m on does make dreaming much more vivid. As such both good dreams and nightmares are part of the package. Vampires. Can’t live with them, can’t dream without them.

3) Leroy Shivers. I’ve wrote about his blog many times. It can be seen at the following url: http://www.npr.org/blogs/mycancer/. Today’s entry is “The Disease Has Exploded.” He’s been battling cancer on somewhat the same timeline as me. He had some major set backs 6 – 9 months ago with cancerous spinal tumor recurrences and multiple surgeries. His attention has been drawn to recuperation since then and not much on the disease. His scan’s from late last week revealed that the cancer is back with a vengeance. Brain, lungs, bone, liver, etc. I’m guessing he is scared and feels he is running out of options. I empathize with him and hope for the best. I’m not sure what the best is for him at this point. I’m pretty sure he’ll tell us when he knows and is ready.

4) Lee Child. This is on the lighter side. Lee is a British author. I began reading his books about 4 – 6 months ago. I finished his 11th and last book last month. However, his newest book came out in the U.S. on June 3rd. I went to his book signing in Houston on Sunday. He spoke for about 20 minutes and then answered audience questions for 40 minutes. It was held at a small bookshop and over 150 people showed up. It had to be a fire code violation. Okay, now back on track. He was thoroughly entertaining. I’m looking forward to reading his 12th novel. It’s the first one that I bought in hardback. For “Jack Reacher” fans… he is in talks with Tom Cruise about a movie deal. Tom Cruise would be the executive director, not the main character, Jack Reacher. Stay tuned to this exciting author.

Remain healthy and take care everyone.

Dreaming the Nightmare

This blog entry’s title is somewhat a play on words for a phase I keep thinking about, “Living the Dream.” I thought at this time in my life, I’d be “living the dream.” After all, I’ve had a good life. Unfortunately, that’s not what has happened. Instead, I began taking an antidepressant, Mirtazapine. Here’s the interesting / funny part, one of the potential side effects is nightmares. An antidepressant that gives you nightmares! Think about that. Believe me, I couldn’t make this stuff up if I tried. So, instead of “Living the Dream,” I’m “Dreaming the Nightmare.” In low doses, this drug acts as a sedative which in turn helps one sleep. That’s a good thing as sleep is an issue for me. But, the mind doesn’t stop while one sleeps. Now, this part I’m making up, or if you give me the benefit of a doubt, taking an educated guess. Since those that are depressed or anxious can have dark thoughts, this drug helps you sleep through them, but the result is a forced sleep while having dark thoughts. If you put the two together, you end up having nightmares. Since I just began this drug yesterday, I don’t know yet how I’ll react or what side effects it may produce, but whatever it is, I’m looking forward to the experience in some inexplicable way. It may be that I like trying new things, even those with unknown outcomes.

Stay healthy and take care.

I Think?

I’m usually pretty sure of myself. But, I’ve written a number of “I think and I don’t think” statements in this post, which means, I’m not really sure. I think I have become a bit depressed. I’m at the cancer center today. I will receive round 8 of chemo cycle 9. I will also be seeing a doctor that may prescribe a mild anti-depressant. I don’t think my state of mind is unusual given my circumstance. One may assume it could be due to my low-level chronic pain, the not feeling well at times, or my disabilities. I think those are contributing factors, but not the main factor. What I’m most frustrated by is the short term “not knowing.” Not knowing how I’ll feel in the morning, not knowing how I’ll feel in an hour, and not knowing how I’ll feel tomorrow. I’ve given up on a time horizon further out than the here and now. As such, planning and committing to any activity, whether social or otherwise, is very difficult. This results in a desire to plan “absolutely nothing.” If you stop and think about that, the ability to not plan anything is depressing. I don’t think I’m depressed by not knowing my longer term prognosis. Every day I wonder if my cancer is back. I have a new pain in my left jaw that feels suspicious. My oncologist is a bit concerned by this as well. He’s scheduling me for a CT scan in 4 weeks. But, I’ve learned to live with the reasonable possibility that my cancer may return. So, I think it’s really the shorter term aspects of this situation that are depressing me. In the long term, as the saying goes, nobody's getting out of here alive… and that I can live with.

By the way, I began this blog just over a year ago and this is my 100th posting. I hope you’ve enjoyed reading it (and learning from it) as much as I’ve enjoyed writing it. Thanks for checking in. Stay well.

How People Feel About Cancer

This will be very short today and is a follow up to yesterday’s posting. When Leroy Siever’s of NPR asked people to finish the sentence that began with, “My cancer,” 276 people responded. The responses came from cancer patients, family members of people who have or had cancer, people who were afraid of getting cancer, and those who wanted to understand the disease. Although, at times, I find some of the responses Pollyannaish in the posts that people leave on Leroy’s site, yesterday was an exception. I read (or at a minimum skimmed) each and every post. They ranged from thankful for the lessons learned to living in dreaded fear for the loss for themselves or a loved one due to the disease. There was unabashed honesty throughout the comments. They ranged in size from a few word phase to a page of text. If you’d like to better understand how cancer affects people, I encourage you to go to the site referenced below, find the April 29 2008 entry, and read through the 276 comments. It’s free and no login or password is required.

Reference – Leroy Siever’s NPR Blog
http://www.npr.org/blogs/mycancer/

My Cancer...

It's my anniversary today. No, not my marriage anniversary, my cancer anniversary. Three years ago today on April 29 2005 I was diagnosed with cancer. I was going to write a long blog about it. However, after reading Leroy Siever’s NPR living with cancer blog (see reference) this morning, I changed my plans. He asked people to post a comment on his blog today that finished the sentence that began with the words, “My cancer.” Here’s what I wrote.

My cancer has paralyzed my life due to my disabilities. It has taken away so many things that I used to enjoy... eating, the ability to plan future activities and commit to them, traveling globally, working intensely, participating/hosting fun social gatherings, scuba diving, golfing, working out, and communicating verbally comfortably. I can still do some of these activities some of the time, but not with the pleasure that I was able to do them before cancer. It has also taken away my spouse’s ability to enjoy many of the activities we used to so much enjoy doing together. It has not been easy on either of us.

My cancer has allowed me to spend more quality time with my daughter and help her with homework and when asked, social situations. She's now a teenager and knows everything by the way. But, she humors me and still asks for advice occasionally. I’ve been thrilled to spend this time with her and help her become wiser in the ways of the world. This is time my cancer doctors didn’t think I would have 2 years ago. It has also shown me great friendships and compassion from so many people including family, friends, and medical professionals. This has taught me to be more compassionate, generous, and thoughtful at times.

Although cancer has made me wiser and smarter in a few very important ways, I would trade it in a minute for the life I had before the words I heard for the first time 3 years ago today on April 29 2005, “you have cancer.” I miss my old “normal.” My new “normal” is something I do the best I can with daily, but each day is a reminder of the good times I had and the things that I‘ve lost.

That was the end of my post on Leroy's blog today. My advice to all of you, enjoy every day and don't take anything special for granted. By the way, although today is my anniversary, it's not the type of an anniversary that one celebrates.

Reference – Leroy Siever’s NPR Blog
http://www.npr.org/blogs/mycancer/

Another Day, Another Infusion

First, I’d like to thank those that posted comments on the last blog entry... The Truth About Cancer on PBS. I talked to and exchanged emails with a few other people who saw the show, but that didn’t post comments. Everyone thought the show was exceptionally well done and sobering.

I had Round 7 of chemo cycle 9 today. It went quite well. They have called in the special “IV Team” the last two times to get my IV started. This is a group that works with patients who have smaller hard to hit veins. The nurse taking care of me examined my arms for about 20 minutes and then said he felt more comfortable with letting the IV team take a shot. No pun intended. They got my vein on the first try with almost no pain at all. They used a 24 gauge needle which is quite small. Hooray. The infusion was finished in about an hour. I also saw three specialists from the Supportive Care unit. A nutritionist, a psychologist, and a doctor team. They are all phenomenal caring people expert in their respective specialty areas. We discussed in some depth pain/anxiety, pain/anxiety medication, and alternative treatments. For now, we’re sticking with my current pain and anxiety regimen. Lastly, I spoke to my friend in the lab and had a nice catch up. I left the house at noon and was home at 7:00. There was little downtime and it felt productive.

What I’m really excited about though is not having to do this again for 4 whole weeks. That’s the plan and I hope to be sticking to it.

Take care everyone.

The Truth About Cancer (PBS) - My Thoughts

I watched this 2 hour documentary on PBS last night. For those who didn’t see it, here’s a brief recap. It followed four patients through their cancer ordeal. They had leukemia, lung, pancreatic, and I think the fourth had breast cancer. It provided an honest chronology about their disease progression, their relationships with their families, friends, and care givers, and for 3 out of 4, their demise. Two of the three died. I wasn’t quit sure about the third. But if he was still alive, the leukemia had returned and it didn’t look good for him. It also talked about advances over the past 50 years. The last half hour was a panel discussion with 4 doctors who had had cancer and was led by a moderator who had had cancer. The special was sobering, real, and well done. Unfortunately, to make it so, it couldn’t have a happy Hollywood ending. As such, it may not be a hit. It was much more insightful than the 60 Minutes Cancer segment which aired last Sunday night. In 60 Minutes defense however, the purpose of the stories were quite different.

If you did see the show, I’d be interested in your thoughts on the show by you posting your comment on my blog. I changed the blog setting today to allow for anonymous comments. I think this means you no longer need a Google ID (and no longer have to log in) to post a comment. When posting a comment, click on the "Anonymous" radio button below the comment box. We'll see if this works.

I’ll highlight the top five ideas, concepts, and impressions I took away from last night’s PBS special.

1. Cancer does not discriminate and it doesn’t fight fair. It can strike anyone at anytime. Cancer is a catch all phase for the general condition of cell mutation gone wrong with no natural way of stopping the rogue cell division. It is really many different diseases and they have to be fought in different ways.

2. I was emotionally upset by each of the patient’s stories. But, the one with pancreatic cancer resonated with me the most. She had a strong support network (friends, family, care givers), she tried to do everything she could to beat the disease, she was realistic, and she tried living each day to the fullest (even near the very end). It was this last point that really got to me and one I would like to try to emulate. A day without pain is a good day and one should embrace it. Also, it doesn’t matter how strong one is or how much they are willing to fight and endure, sometimes the cancer wins.

3. I was very moved by the doctor’s story on his 50 years in treating children with leukemia. He said that 50 years ago, they had no idea what they were doing with the drugs and the child was lucky to die quickly. There were almost no survivors. 50 years later, there is an 85% survival rate 5 years out. He said to his class, and I’m paraphrasing… 50 years ago, they used to celebrate when just one kid made it. Now, doctors cry when one kid doesn’t make it. That’s real progress. He did say that within that 85% survival not all survivors where without serious side effects. Once again, sobering.

4. Cancer research is slow tedious work. One doctor talked about extending median life expectancy in months as significant. He said when you add a few of these together, you can get a year. Although 9 out of 10 drugs in phase I trials never make it to market, every drug on the market was in a phase I trial at some point. I guess I had thought about that before, but this helped bring some clarity to that line of thought.

5. The doctor panel was okay at the end, but it didn’t blow me away. I noticed that none of the panel had the less treatable cancers such as pancreatic or lung cancer. I suspect they couldn’t find any of them, they were probably dead. They did make a few good points. Cancer support should not end with the fatal diagnosis. It’s important to properly transition the patient to the right support team at that time such as hospice.

I applaud PBS for this outstanding piece of journalism.

On a separate subject, I read comments from a few different cancer blogs. It’s surprising to me the people out there believing in the conspiracy of the drug companies to kill any promising cancer treatment advances which don’t directly benefit them. Having been in this for 3 years now, I find their comments without merit and naive. There are too many dedicated, committed, compassionate doctors and researchers out there to allow this to happen.

If you’d like a DVD copy of the PBS show, you can order one and support PBS by going to the following URL…

http://www.pbs.org/wgbh/takeonestep/cancer/

Take care everyone.

My Day at the Cancer Center

It was a good day at the cancer center today. I had 4 appointments. I had my blood drawn in preparation for meeting with my chemo doctor, met with a nurse psychologist to discuss my current mental outlook, and then saw my chemo doctor. There was zero downtime. Every appointment went like clockwork. My doctor said I looked great, my lungs are clear (I was a bit concerned given this flu-like illness I’ve had for the past two weeks), and he did not see or feel anything suspicious. I asked what he thought about giving me an additional week off before I receive another chemo treatment such that I could further recover from this flu-like illness. He thought it would be a great idea with minimal risk. He also wants me to move to an every 4 week IV treatment cycle from the current 3 week cycle. So, although it means going back down there next Wednesday, I really look forward to the reprieve in this week’s chemo treatment. With my chemo for the afternoon cancelled, I took the opportunity to visit with a friend in the cancer lab. We had a terrific catch up. I left the house at 10:00 AM and was home by 3:30 PM. How great is that? We must enjoy the victories when they happen.

Take care everyone.

P.S. Don’t forget to watch The Truth About Cancer airing at 9:00 PM ET on PBS tonight. It will be a good show.

Miracle Cure or Hype?

There was a story about the “Kanzius Machine” on the 60 Minutes news show this past Sunday night. It was also front page on Yahoo yesterday. (See reference 1 for the full written story and 13 minute video replay). Its claim was that a radio executive / inventory with cancer had invented a potential new form of cancer treatment that would have no adverse side effects. Both MD Anderson and the University of Pittsburgh Cancer Institute (UPCI) are aggressively testing this new machine. Both cancer centers have begun animal trials and it has destroyed large solid mass tumors in mice without harmful side effects. Human trials were estimated to be at least 4 years away.

The machine uses radio waves which are harmless to the human body. It uses nanotubes filled with metal injected into the tumor site. I wrote about nanotubes in my blog entry on November 4 2007. Please see that entry for a primer on nanotubes. They are fascinating. The radio waves heat up the metal in the nanotubes and kill the cancer cells without harming the surrounding tissue.

This has great potential. The part of the story that was down played was the difficulty of finding a nanotube with a substance on it (an antibody) that could seek out just the rouge cancer cells. It is these undetectable rouge cells that sometimes metastasize in another organ and then sometimes eventually kill the patient. Also, many tumors are poorly differentiated… meaning they are not rigorously defined with clean edges like a marble. They have tentacles like an octopus that can stretch to areas away from the primary tumor site. That’s why surgeon try to cut enough away to get clean margins during cancer surgery. Finding the rouge cells was mentioned as a challenge to be overcome in the 60 Minutes story, but the seriousness of the challenge went understated in my opinion. Researchers have been looking for ways to direct chemo drugs to just the rouge cells for years, maybe decades. Once the chemo drug finds the cell, it must then find the right pathway to get inside the cell to destroy it. Nanotubes may have an advantage here. If they can adhere to the outside of the rouge cells (without the need to find a pathway to get inside the cell), the nanotubes can be heated and the cells may be able to be destroyed from the outside. This would be a truly remarkable advancement.

I was encouraged by this new device. It will not be an immediate panacea in the war on cancer, but it has the potential to be an important and powerful tool in the cancer war arsenal over the next decade. One downside that crossed my mind was for people like myself that have metal implanted in them. Would a treatment like this be able to differentiate between metal implants and the metal in a nanotube? Miracle cure or hype? Stay tuned, I guess we’ll find out.

Take care.

Reference
http://www.cbsnews.com/stories/2008/04/10/60minutes/main4006951.shtml?source=RSSattr=HOME_4006951

PBS -The Truth About Cancer (April 16 2008, 9:00 PM ET)

I have been reading reviews about this upcoming special. The program is not for everyone. It is not a story with a happy Hollywood ending. It is a story, as the title suggests, about The TRUTH about cancer. There are a few cancer blogs that I read. The best is the one by Leroy Sievers, also of PBS. There are 50 – 200 comments per day from cancer patients, care givers, loved ones of people who have died of cancer, and others who want to understand this disease. All of the comments are well meaning. There are at times a Pollyannaish cheer leader mentality to them… great job Leroy, you can do it, you’re the man, go in the hole (oh yea, that’s golf – sorry, I digress), etc. In a very polite way, I have posted comments to the contrary a few times. Sometimes, it’s not how strong we are or how hard we try, cancer is going to win. This PBS show will expose that side of the cancer equation. And, for those people living on that side of the equation, why should society make them feel like they are giving up? Society does, but it shouldn’t. This show will help us understand that side. I haven’t seen the show, but I’ll go out on a limb and give it a 5 star rating.

Here’s what PBS wrote as an intro to the special… What is the truth about cancer? Is it the same deadly killer it was 30 years ago -- or are we making progress? Find out through the poignant stories of patients battling the disease in The Truth About Cancer premiering nationally on PBS Wednesday, April 16 at 9:00pm ET (check local listings). Comprised of a 90-minute documentary followed by a 30-minute panel discussion, the two-hour broadcast event takes a look deep inside the cancer field gauging how far we have come in this decades-old war and asking, "Why does anyone still die of cancer?"

It will be interesting to see how this PBS special compares with a PBS special aired on September 25 1998. Almost 10 years ago. That special called, “PBS Covers Cancer: A Message of Hope” focused on treatment advances and new hopes. I suspect the special airing this coming Wednesday will also touch on these topics, but while doing so, it will be more balanced.

Take care.

Prognosis Statistics

After my last blog entry, I began wondering (to myself), how statistically fortunate am I to have survived this long after my initial diagnosis. With Google in one hand and an inquisitive mind in the other (as they say, inquisitive minds want to know), I set off to answer this question.

A fine needle aspiration biopsy on April 29 2008 will mark my three year anniversary since my initial diagnosis. But, my lymph nodes started to become swollen in January 2005, 4 months before my diagnosis. So, I’m somewhere in the 3 to almost 3.5 year survivorship range. Knowing what I know now, I found two helpful websites to help answer this question.

The first website was one that further defined the stages of squamous cell carcinoma of the head and neck (SCCHN). It looked at primary tumor size, localized lymph node involvement, and further area metastasis. It rated each of these factors. (Reference 1). I’m taking an educated guess at some of these, but here is my assessment:
- Primary Tumor (T2) – Greater than 2 cm, less than 4 cm
- Lymph Nodes (N2, but maybe N3) – Evidence of movable or fixed local lymph nodes
- Distant Metastasis (M0) – No evidence of distant metastasis

In summary, I had stage IV SCCHN with T2, (N2 or maybe N3), and M0.

The fun doesn’t end here however. What does this mean? The second website (reference 2) divided stage IV into 2 groups. One group had “relatively” good results and the other had very poor results (to say the least). They were divided based on the above T, N, and M ratings. Patients with the new favorable stage IV have a 5-year survival rate of 30%, and those with the new unfavorable stage IV had a survival rate of 0%.

I fall on the borderline side of a favorable stage IV. I think that’s why my treatment has been so aggressive and my recurrences have been so frequent. In 2 years I’ll reach the 5 year mark. That’s a long way off when you’re living a day at a time. But 3 out of 10 people are still here then and I hope to be one of them.

It would have been interesting for the study to state the percent of cases which were on each side of favorable and unfavorable, but it was not available in the referenced article.

Take care.

References
1. http://www.emedicine.com/plastic/topic376.htm
2. http://linkinghub.elsevier.com/retrieve/pii/S0385814699000048

Between a Rock and a Hard Place

I love proverbs. There are websites out there with 100s of them. The more popular proverbs have origin, historical context, and date first published. They fit my style. They are usually short of words and long on meaning. We use to play a game with them where we would see who could name the most... back and forth between 2 or more people. When you ran out, you lost the game.

As I write this, yes, I’m between a rock and a hard place. The “rock” is continuing with my chemo regimen; the “hard place” is stopping my chemo. I’ve said this before and I’ll say it again, there are no right and wrong answers.

On one side is a view to continue what’s appears to be working. The issue with this is the toxicity of the chemo. My body may be reaching a critical stage right now where the cumulative affects are once again severely impacting the quality of my life. This includes: 1) Neuropathy which had in the past been annoying (and local to my toes), but is now reaching further up to the middle of my lower leg and is actually causing some significant short intense pain bursts (one to two minutes) in my toes periodically. In most cases, feelings will eventually come back, but not in all cases. 2) Fatigue which has kept me in bed with flu like symptoms for 5 days straight now. I also went on a 5 day antibiotic pack to help avoid pneumonia. Pneumonia is quite common in long term cancer patients. 3) A few other side effects, some mental, some physical, but not worth getting into. And 4) chemo related death. There are no good statistics on this as it’s hard to determine what killed someone, the chemo or the cancer, but one recent article I read said that up to 65 percent of deaths among children with myeloid leukemia follow chemotherapy complications. If you think about it, today’s chemo kills all cells, both good and bad, the purpose of the chemo is to kill the bad cells faster than the good ones.

On the other side of the equation is a view that says stop the chemo. The potential harm is a cancer recurrence. And, to make this choice that much harder, I’m more or less out of options. Sure, if it comes back, my doctors will try something. But, I’m already off the “planned” course and getting lucky twice is unlikely. I’m not overly worried about dying, but the process of dying with this type of cancer creates great anxiety. It will be painful and not be a pretty sight.

Next week I’ll talk to my doctor about some middle ground… a reduction in dosage, less in each sitting, spread them further apart, or some combination of the aforementioned. I don’t have a clue as to the implications for this, but he will understand this and be able to advise me. There is little doubt in my twisted mind that my current state (no evidence of disease) and longevity has pleasantly surprised my medical team.

Back to the proverb. Definition: In difficulty, faced with a choice between two unsatisfactory options. Origin: The earliest known reference was printed in the U.S. in 1921.

I hope you all are well. Take care.

Gaining Hope Cautiously

Wednesday was a good day at the cancer center. I had seven appointments and they were generally on time. I was there for 8 hours. About half that time was spent with my doctors or their professional assistants. All the news was good. It’s been a little over 5 months since my last operation where my surgeon removed two cancerous tumors from the left side of my face. That makes it officially five months with no evidence of disease (NED). In another week, it will be the longest period or NED since my initial diagnosis almost 3 years ago. I actually know all the exact dates, but will spare you those details. I read a book yesterday that said remission begins at 2 years and one is considered cured if they remain in remission at the 5 year point. For me right now, I’ll take it one day at a time.

My biggest worry going into Wednesday was an irritation in the upper back part of my throat. It was in the exact area where surgery was performed to remove cancer cells/tissue from my soft pallet two years ago. I was hoping the irritation was caused by my new mouth device and not by something more sinister… like a cancer recurrence. Once people have cancer, worrying about recurrence is commonplace. Once people have a recurrence, they worry even more. It’s a vicious cycle. Having had 4 recurrences in the past 2.5 years gives me rational reason to be worried. It’s a longer story, but I’ll cut to the chase. I showed my dental oncologist the spot of irritation. He’s the one who designed my month device. He said he could see it right away and strongly believed it was the device that was causing the irritation. He took the device and refined it a bit. I slipped it back in my month and almost immediately all the friction irritation was gone. Just like magic. The spot itself is still sore, but I’m now thinking it is not sometime sinister and it will heal over the next week or two. It was a huge relief and I’ll sleep better because of this knowledge. Once again my thanks go out to all of those at my cancer center who saw me on Wednesday and all those other professionals who have helped me over the past few years.

I hope you all are well. Take care.

Rocky Road

In the land and time before cancer (BC), I was heading up a major software implementation team for a very well known nationwide retail store in NYC. Shortly before we went live, we threw a small party for the project team. This included people from my company and our clients. Among other things, we served Rocky Road ice creme. It was a symbolic gesture to say we all worked hard, it hadn’t always been easy (as in it has been a rocky road), but we were almost there. It’s easy for me to compare my cancer to a rocky road. I felt pretty good for about 4 weeks, then not well for 3 days (I’ll spare you all the details) beginning last Thursday night. I’m feeling better today. That’s one of the frustrating parts of my situation. I can’t seem to put a cycle on when I’ll feel well and when I won’t. I can get through the illnesses and discomfort, but it makes it so hard to make commitments and to plan anything that requires a specific time period. So, I adjust, reduce my commitments and move on.

I have a full day at the cancer center tomorrow with seven appointments including a chemo infusion. Given the news on my health lately, which has been generally positive, I look forward to what I hope will be continued confirmation as to my well being. I expect that this will be a normal day for me.

I continue to read about Leroy Sievers (lung cancer) on the NPR website and Randy Pausch (pancreatic cancer, former CMU professor) on his website. Leroy has had a really tough 6 months, but he keeps on fighting. For anyone who wants to understand the mindset of a cancer victim, Leroy’s site is A+. Randy has a book being published in April. He received a $7 million advance payment for his book. He has had some recent setbacks and over the past month is beginning to experience the real pain cancer causes. There’s no doubt in my mind he would happily trade his book advance for good health. That's one of the things cancer does for you. It helps you understand what's important.

Thanks for checking in. Take care.

Normal Day

Hi. My cancer blog has focused on my cancer. This may seem like an odd statement for those of you living outside of cancer world. In reading other people’s cancer blogs, they focus on friends, family, trips, current activities, their cancer, feelings, and their cancer treatments. Being a private person, I rarely talk about anything other than life aspects directly connected to my disease.

This blog entry is not breaking with that tradition. But, yesterday was exciting to me, I had an almost normal day. I went to the beach near my house, got mildly sunburned on my legs (87 degrees and sunny out), I took a silly 2 hour bus tour of a historic city (although silly, it was educational and entertaining), and had lobster bisque soup at a boardwalk restaurant next to a water channel overlooking a bay with lots of small yachts and sail boats coming and going. My eating wasn’t pretty. A few napkins were required, but so what. Although the restaurant was a bit noisy, my new mouth piece now allows me to speak over the noise without the effort of shouting. This is a major victory. We left the house at 10 AM and got home at 9 PM. Other than trips to the cancer center, I’m sure I haven’t been out of the house for that length of time since my major operation in July 2006. Taking some illness-related paraphernalia with me for the day took a little extra preparation time to get ready for this outing. Overall, it was close to a normal day and I thoroughly enjoyed that part of it almost as much as the day’s activities themselves.

I don’t expect much new news in the near future and as such don’t expect to be writing blog updates as often as in the past. My next chemo is on March 26th. I have 7 different appointments scheduled at the cancer center for that day. That day too will be normal. Not the kind of normal that I like, but normal to me nonetheless.

Thanks for checking in. Take care.

CT Scan Results – Negative for Disease

I got 2 brief emails today. One from my chemo doctor and the other from his physician assistant. My CT scan from Wednesday night showed no evidence of cancer. Obviously, that’s terrific news. It’s what I was expecting and I‘m pleased. It doesn’t mean I’m cured, but the longer I can hold off the disease, the better my chances are that it will not return. My last operation to remove confirmed cancer cells was in October 2007, 5 months ago. If I can make it 6 – 9 more months with clean scans, I’ll begin feeling much more comfortable. As for the current chemo regimen, it will continue for the time being. That’s the other hurdle, what happens when the chemo stops? I think of it as another situation for my body to be tested somewhere down the road.

Thanks for checking in. Have a great weekend. Take care.

No Pain, No Gain

I had chemo cycle 9 round 5 yesterday. It was a long day at the cancer center. I left the house at 9:00 AM and got back home at 9:30 PM. I accomplished a lot and therefore feel good about the day. It was busy, but with an incredible amount of waiting. Here’s a summary: 1) blood drawn, 2) oncology clinic visit, 3) speech therapy visit, 4) chemo (waited 4 hours for the orders to get from the oncology unit to the chemo unit - ugh), 5) missed dental oncology visit due to the late chemo timing, 6) supportive care clinic visit (waited, but wasn’t in a big rush), and 7) CT scan with contrast (waited – watched 3 episodes of Scrubs to pass the time away at the end of a long day). It was a full day in the life of a cancer survivor (or victim). I can’t decide which term to use today. It varies by mood.

All of my clinic/therapy visits were terrific. The care and devotion shown by these specialists are awesome. Plus, a friend that I’ve made during this journey who works at the hospital took time out while I was getting my chemo and visited with me. That too was terrific. I got one needle stick and 2 different IVs during the day. They were all successful on the first try. Yahoo. I’m calling the clinical trial to help me with fatigue a success. The supportive care unit is now working with me on a few other symptom management areas.

I hope to have the CT scan results back by Monday. I am expecting them to be clean and will be disappointed if they’re not. I don’t feel any new lumps or bumps. I believe the pain and other symptoms I have are chronic and a result of prior treatments, not cancer. I guess the saying “no pain, no gain” really does apply here. I’ll post the results soon after I get them. This chemo cycle began December 11 2007. At the time, my doctor said it should continue for 6 to 12 months or as long as I could tolerate it. It’s been 3 months and I’m tolerating it okay. As long as the scan results are clean, I suspect I’ll continue the chemo for awhile longer. If they’re not, we’ll have to regroup.

I hope all of you are feeling good and healthy. Thanks for checking in. Take care.

Mid Cycle Update

My side effects this chemo cycle have been relatively mild. I seem to be able to more-than-less control them through medication. The clinical trial I began a week ago to alleviate fatigue has worked for me. I say this with some hesitation. As mentioned in the prior blog entry, this is a double blind study. As such, I don’t know whether I’m getting a drug or a placebo. But, whichever it is, it’s working. On the 1 to 10 scale where 1 is no fatigue and 10 is the worst fatigue; I was pretty much at a steady 5 on average prior to last week. I must qualify this by saying my scale is different today than before cancer. In today’s world, a 1 means I feel like I can begin doing a light workout. In the world before cancer, I would have rated myself an 8 or 9 on the fatigue scale. Cancer has a way of changing your perspective on many fronts. The new drug I’m taking has lessened my fatigue level to a 2 or 3. That’s a major improvement both physically and mentally. I found an article on the Internet addressing the use of a drug for cancer-related fatigue. Here’s the URL for those that are interested…

http://www.cancerwise.org/april_2004/display.cfm?id=165dd531-c8c3-422c-bdcbde72034d9f8c&method=displayfull&color=green

I asked the clinical trial administrator if I would ever find out whether it is the drug or the placebo that I’m taking. She wasn’t sure, but will try to find out. I’ll let you know the answer if I get one.

The only other news of note is an upcoming CT scan. It’s scheduled for March 5th. The results will be available around March 10th. Given my history, scan results can at best be neutral news (no clear evidence of disease) and at worst bad news. My last scan was in mid November. Here again, I’ll keep you posted.

I finished two more novels by Lee Child. For those interested in action, suspense, puzzles, and clues, this may be a good read. I know I have enjoyed his works.

I hope all of you are feeling good and healthy. Thanks for checking in. Take care.

Mixed Feelings

It was a good day at the cancer center yesterday. I should be happy today, but more than anything else, I’m feeling tired. I won’t go through the blow-by-blow details of yesterday’s visit; here’s a summary. I met with my chemo doctor. He is scheduling a scan for early March, he thinks I look good, we talked for awhile, and he sent me off for chemo which was later in the day. I visited with the Supportive Care unit. They used to be called Palliative Care. The doctor I met with there explained that they do more than end of life treatments. They also treat symptoms and provide counseling. She recommended a clinical trial to address my fatigue. I read the paperwork and agreed to participate in the clinical trial. It will take place over a 7 week period. The first two weeks will be with a drug or a placebo (it’s a double-blind study meaning the administrator of the study nor the subject (in this case myself) knows whether or not I’m getting the drug or the placebo). The next five weeks will be with the drug. I have a daily log book and will receive survey calls 3 times per week to assess how I’m feeling and my activity level. I had to answer an extensive questionnaire, take a few cognitive tests to establish a baseline, and also one physical test. I will begin taking the drug/placebo on Saturday. The drug has been on the market for a long time, but not in the treatment of fatigue due to cancer. It would open a whole new market for this drug if successful. I then visited my dental oncologist and finished the fitting for my new mouth prosthetic. It will take a few weeks to get used to, but it makes a noticeable positive difference in the quality of my voice. For that I am truly thankful. Lastly, I had my chemo. The nurse got my IV going on the first stick, which is good, but she may have punctured the underside side of the vein in the process. That’s not unusual. I’ll be able to tell within the next 24 hours if it turns black and blue. This all took place over about a 7 hour period. That’s pretty good when compared to past visits.

Happy Valentine’s Day. Thanks for checking in. Take care everyone.

Duration Test

A friend of mine told me a few years ago that having cancer and treating it was more like the challenges one faces in running a marathon than in running a sprint. It’s basically a long drawn out process. That is not true in every case (some people become cured and some people die quickly from the disease), but it sure is true in my case. It’s been a tough weekend. I’ve been under the weather. Severe headache, nausea, chills, and skin/muscle tightness in places where I was treated with radiation and surgery. It’s similar to having flu like symptoms. However, I don’t have any fever and therefore don’t think that I have the flu. It’s probably chemo related, but I’m not sure. The symptoms began on Friday night and are continuing though tonight (Sunday). It’s disappointing because my last IV treatment was 2.5 weeks ago and up until Friday night, the side effects had been relatively minor, some fatigue and neuropathy (feet/toe numbness). It’s times like this where one has to just lay back and hope that the discomfort fads quickly and that tomorrow will be a better day. Bottom line, this cancer stuff is just plain old tiring right now.

That’s all for now. Thanks for checking in. Take care everyone.

Mid Chemo Round Update

It’s been 9 days since my last chemo treatment and 12 days until my next one. This round has been relatively mild from a side effect perspective. I’m still fighting fatigue, but not severe fatigue. I tried cutting back on my pain/anxiety medicine, but that little experiment proved to be uncomfortable. My current dosing is relatively low. I’m at 50% of the maximum daily dose for one of the lesser strength prescription pain medicines and at about 20% of maximum daily dose for my anxiety medicine. Ideally, I’d like to be at no medication. The self imposed cut back severely disrupted my sleep for almost a week. Lack of a good sleep made me generally uncomfortable. As such, yesterday I went back to the dose that helps me get by.

I had an interesting phone conversation with someone today. We didn’t know each other (she was a representative at a company where I bank). We began to talk about my speech impediment. She said her sister had a brain aneurysm which caused her to have a speech impediment, but it did not impact her cognitive abilities. She went on to say that her sister was very frustrated by this because she had trouble communicating with people and people treated her differently. She then said, “you must be frustrated.” Ah ha, (the proverbial light bulb went off in my head) that is the perfect word for how I feel, “FRUSTRATED.” Okay, I said it. I like to talk and communicate, but it’s hard for me to do so in a way that I feel is normal, especially over the phone. This is not a complaint; I’m trying to share with those that read my blog how I feel. I’m looking forward to my new month prosthetic that will be ready in about a month. They took a mouth impression last week and it will take about 3 fittings to get it right. The first fitting is this coming Monday. I hope I’m being realistic about what this device will do for me. Once it’s fitted properly, it will take a few weeks to get used to. I’ll let you know how it works.

That’s all for now. Thanks, as always, for checking in. Take care everyone.

Chemo Cycle 9 – Round 3 (or “what’s a day of chemo treatment look like?”)

Hi. I had chemo yesterday. It seemed like a fairly routine visit overall. Here’s the raw logistics. It is a bit boring, but read on if you wish. I checked in for my blood draw at 1:00 PM. The place was packed. People are just dying to get in here. I always wanted to say that. Okay, maybe not so funny. I had a small insurance issue to take care of so I went to the business office and met with one of their business consultants. She understood the issue immediately, said her computer was down, but she would take care of it. I was back at the blood center at 1:20 PM. My name had not yet been called. At 1:35 PM, my name was called and I gave a blood sample. It literally takes about a minute and is generally painless. I then checked in for my chemo clinic appointment, but told them I was going to visit my dental oncology appointment first. My thinking here is that at least I can delude myself into thinking that this will get me into the queue for the chemo appointment. I arrive at my dental oncology appointment a 2:00 PM. I am pleasantly surprised when I’m called in at 2:20 PM and they begin my treatment immediately. A little side detour. A year+ ago I was wearing an oral prosthetic device that allowed me to speak at about 85% of my prior capability. When my cancer returned in December 2006 and then chemo began, it was so debilitating, that I had to stop wearing the device due to how it irritated my mouth. My oral cavity has changed since then and that device no longer fits. I decided to try a new device so that I can regain a better speech quality. They took an indentation of my upper and lower teeth/gums. It will take about 4 visits over the next 6 – 8 weeks to complete this process. I’m getting a devise that may even allow me to eat with it in. If that works, it will be a huge improvement. I was back in the chemo unit at 3:00 PM. Here again, I was pleasantly surprised when they called me in at 3:15 PM. I had my vitals taken. My blood analysis was back from the earlier blood draw. My chemo doctor examined me, said I looked very good, filled a few prescriptions, and sent me on my way to the chemo unit. The one part that bothered me about the visit was a recommendation that I see a doctor in the palliative care unit to assess me and see if anything can be done to help my fatigue. My doctor assured me it was not for hospice care. He thought they were better equipped then he was to address fatigue. That may be the case. But it spooks me. In my paranoid thinking, is it a way to get me comfortable with the people in the palliative care unit? Anyway, I agreed, but there was no rush on it, so I’ll probably see them in mid-February. By 3:55 PM I was in the Chemo unit. My chemo orders showed up at about 5:30 PM, an hour and 35 minutes later. I was brought back into the unit, my vitals were taken again, and I was sent to a private room. A wonderful nurse took care of me. She was from the Philippines. She had been an ICU nurse at the time I was in the ICU in July of 2006, but had recently transferred to the out patient chemo unit. I asked her to use a small needle (24 gauge) and to put it in very slowly. She got my IV started on the first try. Hooray. I really want to avoid getting a chemo port. My veins are pretty well shot at this point, but if they can do this again like they did yesterday, then I can avoid a port. It may hurt a little more when they do it slowly, but if they can do it right the first time, then that’s the way to go. I now had to wait for the chemo drugs to come from the pharmacy. That took about 30 minutes. The current chemo regimen took 90 minutes for round 1, 60 minutes for round 2, and 30 minutes for round 3. That was the round I had yesterday. Future treatments will take 30 minutes. They had to take vital sign immediately before and after the treatment. I finished at 7:00 PM.

So, if you ever wondered what one does in the hospital on chemo day, this should provide that insight. The hospital has full wireless Internet access. So, while waiting, I usually surf the net, write emails, read the Wall Street Journal, or watch DVDs. I watched the first 4 episodes of Season 5 of Scrubs while waiting for and during my chemo treatment. It’s a pretty funny show.

That’s all for now. Thanks for checking in. Take care everyone.

SOSO

Same old, same old (soso). Hi. There's not really a lot of new news to post. I'm feeling a bit fatigued and also have a few other chemo side affects which are tolerable. I'm managing most of them with over the counter medicines. Leroy Sievers from the NPR cancer blog wrote on 1/16/08 the following, "More than two years in [with this disease], cancer has just become another part of my life." That's pretty much how I'm feeling lately. So, for those out there that are wondering how I'm doing, I'm doing okay. I'm in mid cycle with my IV chemo treatment and have more than less had to abandon working out. I'll resume my workouts as soon as my body tells me I can.

Thanks for checking in. Take care everyone.

Very Quick Update

This chemo round is going better than the first round. I've been ill a few times, but the illness has been short lived due to better living through chemistry. I'm still a bit fatigued and am therefore not working out. I hope to begin my workouts again within the next few days.

For those of you that follow Leroy Sievers and his cancer journey blog on the NPR website, he's not doing well. See post from January 9 2008. http://www.npr.org/blogs/mycancer/. Also, a post a few days ago on his blog talks about the passing away of Stephanie Dornbrook. I believe, but am not sure, that she was featured with Leroy in the Ted Koppel Living with Cancer special last May. She wrote a short farewell and some advice to all. As was her style, she was short and to the point. She used three words and said, "goodbye....forgive everything." These are wise words, but her passing away is a grim reminder of this disease.

Someone posted a comment on my last blog. If interested, please e-mail me. My e-mail address is in my profile on the blog.

Take care everyone.

Chemo Cycle 9 Round 2 Update

Happy and Healthy New Year 2008!

I haven’t written lately because nothing much is happening right now with my cancer. I had chemo yesterday, Avastin. It is infused via IV every three weeks. It only took three tries to get an IV going yesterday. I was in a pretty good mood, so it didn’t hurt much. I am continuing with my daily chemo pill, Tarceva. This chemo cocktail will continue for 6 to 12 months or until I can’t tolerate it.

We are still working on approval of a drug not yet ready for prime time, but these things take awhile. It’s a complicated and political process. From the drug company’s perspective, they have spent $100s of million (maybe more) developing this drug and running clinical trials. There are 27 active trials across 20 countries involving over 2,000 participants at this time. As such, this drug is close to being able to bring to the open market. By close, in drug approval time (like dog years) it is about a human year away from being approved and available for me by prescription from a select number of doctors. From my perspective, it has shown such great promise and provided me with hope for a cure. A few close friends, my doctor, and I have been working to make this drug available to me as an option for treatment on a compassionate use basis from the drug company. This story will continue to unfold over the next month. The bottom line is there is nothing in it for the drug companies to make drugs in this stage of testing (drug trials I, II, and III) available to people who do not qualify for one of their trials. There is only downside to them. They have to report all adverse reactions… from skin rash to death. As such, it’s a delicate balance. I believe that in their hearts, they want to help, but they also have their stockholders to answer to and need to protect their investment. For me, it could mean the difference between life and death.

My current drug regimen attacks cancer cells in much the same way as this new drug. So, if I can tolerate this regimen, it may be the one I stick with even if the new drug is approved. We’ll cross that bridge when we come to it.

All for now. Take care everyone.