Wednesday, March 18, 2009

Another Cancer Patient Passes Away

Hi,

I follow 1 or 2 cancer blogs at any given time. I choose them because for different reasons they resonate with me. One blog that I've been following since it's inception 8 months ago is a blog titled "Waeger Will Win" co-authored by Dan Waeger and his fiancee Meg Rodgers. Dan had been fighting lung cancer for almost 4 years when he passed away at 26 (note, I updated his age based on feedback from his mother -- I had mistakenly said "in his early 30s") on Monday March 16 2009. It's probably hard to go back and read the 100+ blog entries since the blog began, but the last 5 are particularly poignant. Even in death, this couple could find compassion, love, sorrow, a winning attitude, and dignity all at the same time. Instead of dwelling on the act of dying, one recent post defined the term "winning" and tied it back to Dan's situation. Another post focused on 25 things to remember about Dan. The blog carries both humor and gravity. If you have an interest in learning from others by example in a time when "for better or worse" followed the "worse" case, yet did so with so much strength and loving, it's worth reading the five posting dated from March 5 2009 to March 16 2009. Their blog is at:

http://waegerwillwin.blogspot.com/.

My wishes for peace go out to Dan, Megan and their families and friends.

Two other items. Thank you for all of your comments on my last post entry. About a third were from people who actually posted comments directly on the blog. The rest were excerpts from emails I received. I removed the senders last name (or just included their initials to ensure anonymity) as well as non-cancer related comments before posting them. This blog is more about "my cancer" than it is about me.

One blog comment last week suggested that I provide advice about what approach I would use today, given my found (although not desired) expertise in Cancer World if I were to hear those life changing words today, "you have cancer." That's an excellent suggestion and a topic I'll address in the next few days. They also suggested I ask you what subjects about cancer may be of interest. I certainly don't have all the answers, but it may lead to some useful commentary by me as well as contribution by you. If you have questions or subject areas, please post them.

Once again, posting a comment is easy and doesn't require a user ID or pass code. A comment can literally be posted in a minute by clicking on the word "comment" at the end of each blog entry. Check the "Anonymous" radio button blog option if you'd rather not log in. It is that easy.

Thanks for checking in, stay positive, and take care of yourself.

Thursday, March 12, 2009

Health Update and Comments on MD Anderson

I'll start off today by asking you for a favor. A lot of you have my email address, it is readily available in my blog profile. I always appreciate hearing from you. My favor is that you post comments, when you feel like it, on this blog. It is set up so that you can do it anonymously thereby avoiding the need for yet another ID and password. I'd like to experiment with trying to create a blog community. Thank you. I may change my mind on this, but I'm thinking it may be a fun and useful experience.

I spent a full day at the cancer center yesterday. I arrived at 5:50 AM, had blood drawn at 6:20, a chest x-ray at 6:50, an IV inserted at 7:30, a H&N CT at 7:45, a chest CT at 7:55, a dental oncology visit at 9:00, a surgery follow up consult at 11:00, a supportive care consult at 1:00 PM, an oncology consult at 2:00, and a return to the dental oncology unit at 3:00. I left the hospital a little after 4:00 PM. It was a productive day.

The 2 dental oncology visits took 3 hours in total, no waiting involved. They worked on shaping and finishing a new mouth prosthesis device fitting it to plug the unique defect in my soft palette. I’m wearing it now. Its like getting new braces; it will take a little while to adjust to the feel and fit. I’m encouraged by the early results however.

I measure visit productivity as the time when I’m being seen, examined, or tested (the numerator) by the total time I am at the hospital (the denominator). I don’t use a stop watch to perform this measurement, but I’d guesstimate that yesterday was 70% productive. I’m also guessing that my average visit productivity is around 15%. Visit productivity has no linkage to actual heath care quality. It does however have a high correlation to my (and by a loose interpolation to) patient satisfaction. 15% as an average is pathetic, 70% is off the scale incredible.

My clinic visits involve a great deal of questioning, answering, general catch up, probing and listening with different medical devices and fingers, and in the end an assessment. In summary, my doctors thought I looked well, they did not see or feel any areas of concern, and my oncologist thought I was tolerating my daily chemo pill so well that he left me at the highest recommended daily dosage. I was okay with that. My chest CT had been finalized by a radiologist and showed no evidence of metastatic disease (i.e., no lung cancer). That was a relief after the concern identified by my primary care physician last week. Better safe than sorry in my opinion. My H&N CT will take a bit longer to interpret. With all my surgery-induced scar tissue, a CT with contrast is a good tool, but not a great tool at identifying new cancer growth. Unfortunately for me, it’s probably the best tool available. It will be a few days before I hear back on the test results from this CT scan. I'll post the results when they become available.

My cancer center, MD Anderson, has been rated the number one cancer center in the US for the past 4 out of 5 years. Although my visit productivity value may be low, the quality of care is incredible. They go out of their way to look holistically at patients. There is amazing collaboration among the doctors and the departments. A surgeon won’t feel good about performing an amazing surgery if the patient later dies because the cancer came back elsewhere and finished the patient off. They are also mindful of the quality of life and embed that into their ongoing care. I’m not that happy with some of my surgically-induced changes, but I give my surgeon and his team (assistants, researchers) an A+ along with my oncology doctor, radiologist, supportive care doctor, and dental oncologist for allowing me to get this far, regardless of what happens in the future. One other thing that impresses me about MD Anderson, they have procedures in place and they follow them. They may not make sense to the layman, but I have little doubt that they are there for a good reason and as odd as some of them may seem, they save lives and deliver the best cancer-related health care available in this country.

Take care of yourself. And remember, comments are welcome. A story about yourself, a comment on the material in the blog, or something as simple as a hello are welcome.
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Added at 3:00 PM on 3/12/09

My oncologist's Physicians Assistant called with an update on my H&N CT. There is no evidence of disease shown in the H&N CT. That makes it 17 months with no evidence of disease.

Tuesday, March 10, 2009

A Long Day at the Cancer Center Tomorrow

Hi. I have a long day at the cancer center on Wednesday (3/11/09). It will begin with a blood draw at 6:00 AM. That will be followed by a CT scan with contrast (meaning an IV is required) of the H&N and chest at around 8:00 AM. Then I have clinical exams with 4 separate clinics: surgery, oncology, supportive care, and dental. I'll get some feedback on my health during my clinic visits. The CT results will be available in 7 to 10 days. I'm a bit apprehensive, but am going into it feeling well. I'll post results as soon as they are available.

A friend sent me these pictures today. I thought they were incredible and as such am posting some of them on my blog for you all to enjoy. My sister and I experienced a storm similar to the one depicted in picture #1 in the Arizona desert on our way to Tucson in 1970. Double clicking on any single image will show you a larger version of that image.









Monday, March 9, 2009

The Challenge of Eating

Many people ask me why I have difficulty eating. There are probably others who wonder why, but are either too polite or shy to ask. This post is for the curious as well as for others that may have a similar problem. As a bit of background, I had major cancer removal surgery in July of 2006. That surgery removed:
- a 7 by 2.5 inch lining of skin, muscle, and tissue within my upper throat area (and was replaced by tissue from my leg),
- a small portion of my tongue (including a major tongue nerve),
- my left lower jaw (which was replaced by a long piece of titanium and a bone, the tibia, from my leg), and
- last, but not least, half of my epiglottis.

Swallowing is a very complex anatomical mechanism. When it works well, like breathing, it happens effortlessly and naturally. The following link illustrates how the anatomy accomplishes eating and breathing. It is a motion illustration with the red flow representing the breathing and the green flow representing the food movement.

http://people.eku.edu/ritchisong/epiglottis.gif

Here’s a still picture of the above link. I recommend using the above link however as it does a much better job of demonstrating how the epiglottis works.



After my July 2006 surgery, I had a tracheotomy that allowed me to breathe for about 2 months and a feeding tube that allowed me to get all of my nutrition for about 4 months. Obviously, it’s easy to see that my anatomy has changed. The rest of this posting described exactly what has changed and how I’ve tried to compensate for those changes.

First, the muscles and their associated nerves which controlled them in the back of my throat which help push food down the esophagus (which connects to the stomach) are gone. Second, half of my epiglottis is gone. A normal and healthy epiglottis moves with each swallow to protect the airway (trachea or windpipe) from food and liquids entering the lungs. Third, I don’t have the crewing power that I had before the removal of my lower left jaw.

There are techniques to eating which help me get food into my esophagus while helping to avoid having food or liquids going down into the trachea (which is attached to the lungs). Food and liquids going into the lungs cause one of two issues. The first is severe and immediate chocking which can cause almost immediate asphyxiation and death. The second is a slower process of illness which is a build up of food and liquid in the lungs which can lead to pneumonia. I’ve read many cases of people in my situation either getting pneumonia or giving up and going back to a feeding tube, or both.

My swallowing therapist a while back taught me to try swallowing using a chin tuck. This is where one takes food into their mouth, tucks their chin to their chest, and then swallows. I’m not sure what this does to the anatomy, but it helps me a bit. Unfortunately, it does not help enough. What I added to this technique is 1) eat in a reclining position, 2) take a breath and hold it before each swallow, and 3) focus intensely on what I’m doing. The result of this is that gravity replaces some of what the muscles in my throat used to do, a small air pocket is created in my trachea thereby helping to keep food and liquids out of my lungs, and by concentrating on what I’m doing, I rarely choke or aspirate. I’m sharing this not so that you can run out and try it, but maybe it can give you a few ideas to talk over with your swallowing therapist. What works for me may not work for you and in no way is an endorsement of something that you should try. We have all been compromised in different ways.

90% of my nutrition comes from liquids (e.g., Boost). The other 10% is a variety of foods, mostly soft and small, to avoid the likelihood of choking. It is not a particularly social way to eat (which is why I don’t eat in public), but it has allowed me to maintain my weight for 2+ years without a feeding tube. I chose to get the majority of my nutrition through liquids because it is easier for me then the intake of solid foods.

I hope this was helpful to some and educational to others.

Thanks for checking in. Take care of yourself.

Monday, March 2, 2009

E Ticket Ride at Disneyland

For those of you that are old enough, you know what the E ticket ride at Disneyland was. I’m not talking about an “E”lectronic ticket, nor am I talking about Disney World. The E ticket at Disneyland was for the best rides. Back in the old days of the 50s, 60s, and 70s, you needed a ticket for each ride once you were inside the park. As a kid growing up in southern California I used to love going to Disneyland and going on the E ticket rides like the Matterhorn with all the speed, twists, turns, and bumps. No matter how many times I rode the Matterhorn, it always thrilled me. To ride the Matterhorn, you needed the E ticket. A C ticket would get you a seat on the Dumbo Flying Elephants. An A ticket would get you into the Sleeping Beauty Castle. The Castle really wasn’t my cup of tea. For me it was all about the E tickets. Truth is, even as a young adult back in Southern California, I still loved the E ticket rides.

What’s this have to do with my cancer? I’m older now and having cancer is like an E ticket ride, but not in a good sense. There are lots of spins, turns, and other unexpected moves that take your breath away.

I stopped posting to this log recently. I was trying to leave cancer world behind. Having no evidence of disease for 16 months has put me in a place where I have been trying to get on with my life outside and away from cancer world. The thing is however, for me, it always seems to want to pull me back in.

In early February I went in for some tests at my primary care physician (PCP) due to experiencing a slight shortness of breath. My doctor took a chest x-ray and did a lung capacity test. He said my x-ray looked clear (although he would have to send it to the radiologist for review) and that my lung capacity was excellent. Given that this all looked okay, he had me see a cardiologist to rule out any heart troubles. That exam was last week. The initial tests were all good. I have one more test tomorrow, but am really not expecting that test to turn up any heart issue. My PCP called today (3+ weeks after my x-ray) and asked me to come back in for another x-ray. The radiologist found a spot on one of my ribs that he thought could be a bone shadow (no big deal)… or, it could be a lung nodule (i.e., lung cancer). For three years at the cancer center my doctors have been very pleased that my H&N cancer has not spread to my lungs. Lung cancer is a natural progression for H&N cancer. Of course, since they are always on the lookout for this and because my mom died of lung cancer in September of 2000, it has heightened my sensitivity to this potential issue. My guess is that it will turn out to be nothing. I feel too good physically (maybe a bit tired at times) to believe that I may have lung cancer. I shared all of this earlier today with my oncologist at the cancer center. He is adding a chest CT to the H&N CT which was already scheduled for next week. The results from those tests will be ready around March 18th. Between now and then, I have to keep reminding myself to take advantage of this time.

Even if the cancer is not back (and I don’t think it is), it is never the less unrelenting. It's like the E ticket ride at Disneyland, even if you're scared and want to get off, you can't.

Thanks for checking in. I'll post again when I have some definitive news. Take care of yourself.

Thursday, February 12, 2009

5 Stages of Grief

Okay. Here’s a test. No peaking ahead now. Can you name the 5 stages of grief? Go ahead, stop, write them down. Did you stop? Did you write them down? For me, as with most things in life, I had to Google it.

They are 1) denial (this can’t be happening to me), 2) anger (why me), 3) bargaining (I’ll do xyz if you undo abc), 4) depression (frustration, hopelessness), and 5) acceptance (which is different from resignation).

So, how’d you do? 5 out of 5? Bravo! I never paid must heed to this. The reason for not paying attention to this is that I never went through stages 1, 2, or 3 (denial, anger, or bargaining). However, now I find myself in stage 4, depression. I’ve done some recent research and have come to find out, not too surprisingly, that this is pretty common for cancer survivors. I know I’ve written about depression in the past, but I seem to be struck in this state longer than seems right. I began some counseling recently which I think will help in the long run. It appears that until I accept the new me, the new “normal,” I’ll be struck in stage 4. So, if I really want to move on with my life, meaning, if I want to live life to its fullest, I have to accept who I am today and leave behind who I used to be. It may sound a little corny, but it is embracing who you are and not who you were. Since, adaptation, is my middle name, I don’t know why this is so hard. Anyway, that’s what I’m working on. I suspect that until I can get to step 5, I’ll be wasting time and energy in step 4.

As to my physical health, I’m pretty good. I had a non-invasive procedure done on my right shoulder which gave it back almost full mobility. I had an x-ray yesterday and my lungs are clear, so no signs of lung cancer (always a concern for H&N cancer victims). I’m half way through a 10 day course of antibiotics to fight a sinus infection. I’ve had no evidence of cancer for 16 months. So, there are no new physical complaints worth mentioning. My next check up is in about a month. I’ll keep you posted.

One last thing, my new favorite song, Good Riddance (Time of Your Life), by Green Day, 1997. Here's a version of it with lyrics on youtube. http://www.youtube.com/watch?v=awJ_ekg6BZQ

Thanks for checking in and take care of yourself.

Tuesday, January 6, 2009

Happy New Year!

I’ve been a bit delinquent in updating my blog lately, so here goes. My systemic health remains good. A visit to the cancer center on Monday for a clinical exam found nothing of concern. It had been 6 weeks since my first “routine” exam back in mid-November 2008. This was the longest period in 3+ years between hospital visits and the extended length of time between visits feels great. My next “cancer” exam visit will be in March and will include a CT scan of the head and neck. I have other visits scheduled at the cancer center, some as early as next week, but it is to work on a new mouth prosthetic device, one that they think may be more comfortable than the existing device. I’m still struggling a bit with some minor ailments which include pain, shoulder mobility, and most recently cold feet. The cold feet are probably a result of peripheral nerve damage from the chemo. I’m seeing a shoulder specialist tomorrow and will probably follow through with a minor shoulder procedure and physical therapy later this month. The bottom line is that I’m spending a lot less time on health issues.

I’ve shifted my time to reading and have two book recommendations. The Longest Winter and The Snowball. The former is the true story of an 18 man platoon during the last year of World War II. They fought at the Battle of the Bulge and helped change the course of the war. For those that survived and were not captured they endured unbelievable conditions as POWs. The latter is a 1,000 page authorized biography on Warren Buffett. This isn’t the first Warren Buffett book that I’ve read, but it is the most engrossing. I’m not quite done with this one yet. Both books provide deep insight into humanity and are inspirational. To change subjects, if you haven’t seen it yet, I highly recommend Slumdog Millionaire as one of 2008's best movies.

Thanks for checking in and take care of yourself.