Friday, August 31, 2007

Chemo Cycle 7 - Round 2

It's been a few days since I last wrote. I wanted to see how I felt after my chemo treatment that was administered on Wednesday afternoon. It's too early to tell. I've had a pretty wicked headache both Wednesday and Thursday nights, but used my drugs to sleep it off. There is a bit of tightness in my jaw, but not nearly as bad as other treatment side effects, at least so far. The bottom line is that it may be too early to tell how my body will react to this round. Going forward, I get a week off of chemo and then begin Cycle 8. It will consist of two infusions and are targeted for September 12th and 19th. My doctor suggested that we move the scans from mid-September to late-September to coincide with the end of the chemo. I agreed.

Depending on what the scans show, new recommendations and treatment plans will be discussed and a new path will begin. If the scans show I'm clean, that path could include an oral chemo medicine(s) or nothing at all except future monitoring scans. If I'm not clean, that opens up a completely new can of worms and too many options to go into here.

Leroy Sievers had a cancer joke on his NPR blog a few days ago. It’s not really that funny, but it resonated with me. So, here goes…

When a cancer patient dies, why do they nail the coffin shut? [Pause, drum roll]

So the doctors can't do just one more round of chemo.

ha ha

Switching subjects, I was contacted earlier this week by an individual who was diagnosed with head and neck cancer in 1999. I won't go into his history in detail, but he was treated primarily at John Hopkins with 3 relatively minor surgeries (I say relatively minor when compared to what I have been through). He refused chemo and radiation treatments at John Hopkins because after research he was convinced that they were more harmful than helpful. He went to a clinic in Mexico, not too far south of San Diego and had oxygen therapy to build up his immune system and Insulin Potentation Therapy (IPT) to attack the cancer cells. This therapy consists of small doses of FDA approved chemo drugs (maybe 1/10th the normal dose) delivered daily (or every two days) over a few week period. The chemo is mixed with glucose. Cancer cells love glucose. This chemo treatment created minimal, if any negative side effects in this individual, and targeted the cancer cells using the glucose. As a point of interest here, when they do my PET scans, they use glucose combined with radioactive molecules to highlight cancer cell hot spots in my body. Cancer cells have 10+ times the receptors for glucose than a normal cell. The cancer cells take in the glucose and that’s why the radiation becomes concentrated within the tumors and lights up on the PET scan. He has been to this clinic in Mexico three times over the past 8 years and is currently cancer free (or at least no evidence of cancer - NED). That’s a pretty good track record in my book. This procedure is used by some doctors in the US and has been presented to NIH and the major cancer hospitals in the U.S. going back almost 20 years. It was first used to treat cancer in the 1930s. It is difficult for me to get an accurate read on what NIH and the major hospitals felt about this procedure. But, from what I've read, these institutions seemed to say it showed positive results, but needed more study. If my scans in September come back with evidence of disease, this will be an alternative I will fully explore.

That's it for now. Take care everyone.

Sunday, August 26, 2007

Chemo Cycle 7 – Round 1 (Side Effects)

It is Sunday evening, 4 days since my last chemo treatment. This last round has been tolerable. I don’t know if it was the reduced dosage (a 25% reduction in the Gemcitabine), a week off from chemo the prior week, a slight increase in my pain / anxiety drugs or what, but I’m just glad that I have felt pretty good the past 4 days. I have been able to eat (maintain my weight), do physical activity, and be with family and friends.

My next chemo is scheduled for this coming Wednesday. I’ll give a blood sample, see my chemo doctor for a clinical exam, and then get the chemo assuming my blood sample is within acceptable blood count levels. I’m better off than others who have required blood transfusions to keep their blood counts at levels acceptable to continuing chemo. We’ll probably also schedule the next series of scans which are targeted for mid-September. This is high anxiety time. It has been 2 to 3 months since my last PET and CT with contrast scans. That’s when they did the surgery to remove the one and only detectable cancer tumor under my right jaw area. There seems to be so many stories where chemo has not worked. Or, it worked for awhile, but then stopped working. So it seems only rational to me to have a heightened sense of anxiety. I try not to dwell on it however.

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

Thursday, August 23, 2007

Chemo Cycle 7 – Round 1

It is early Thursday morning, about 4:30 AM. I finished my chemo cycle about 9 hours ago. The logistics weren’t too bad. We left home about 3:00 PM and got back a little after 9:00 PM. I always consider it a success when we miss the rush hour traffic. I gave a blood sample and my counts were acceptable. My chemo nurse hit my vein the first time, but with a little fiddling. Still a plus in my book. I’m up this early because the pain medicine I took at 9:30 PM last night wore off a few hours earlier than had I not had the chemo. As such, I took some more and am waiting for it to kick in and then hopefully will fall back to sleep for another few hours. It’s not a lot of pain right now, mostly just a slight headache, nausea, and a minor tightening in my neck area (tissue or muscle, not sure which anymore). The real pain is the anxiety of not knowing how far the pain will go over the next week. This dosage was reduced by 25% from my last cycle, but I’ve learned that the affects of chemo accumulation for me are unknown but tend to be on the more sensitive side than what I believe other patients experience.

I was feeling well enough before the chemo to drive, throw a few things on the pottery wheel (I’m way out of practice – plus, throwing a piece is a long way off from finishing a piece), and setting up a mini golf driving range in my backyard. The driving range looks good, but the temperature here has been in the upper 90s with high humidity, so I’ve had to leave it to just looking good and not really giving it a good workout. I wasn’t feeling quite well enough to begin exercising again. It was only a matter of days until I would have been able to, but the chemo was more important right now.

With all this, life goes on, for me and those around me. It is filled with the joy and happiness of being around friends and family. The best part is seeing good things happen to those close to me. Sometimes I don’t show it, but that really is the best part.

For those of you who missed it and are interested, my younger, but elder of my two brothers had a story and big picture of himself on the upper left hand section on the FRONT page of the Sunday NY Times newspaper two weeks ago. There is also a 5 minute video dedicated to him and his life style within the story published online. The URL link to the story is…

It was fun to have a celebrity so close to home. 98% of the feedback he got from the article was positive.

Thanks again to everyone that is keeping up with me via the blog. I’ll be stopping the mini survey soon. It looks like about two-thirds of you are reading this on a weekly plus basis and the rest a bit less frequently. Take care everyone.

Friday, August 17, 2007

Quicky Update

It's Friday night and today was a good day... finally. The decision to cancel the last chemo treatment this past Wednesday continues to feel even more right to me today. I did some physical activity, saw the Bourne Ultimatum (action packed but with a weak plot), ate 2.5 meals, drank a bunch of water, and generally felt pretty good. Recovery from the chemo takes awhile, but once it starts, it seems like it only takes a few days to fully kick in. So, I expect to have the next 4 days in which to enjoy a brief vacation from my disease before my next chemo round starts. I finished the River of Doubt about Teddy Roosevelt's exploration of the Amazon jungle yesterday. This was a quick read and very enlightening; I highly recommend it. I also wrote a rather lengthy e-mail to my chemo doctor asking him to think about ways to help make future chemo more tolerable. I'm not sure there are any answers to be had here since we talk at length about this in person, but it made me feel like I was doing something to address the adverse side effect issue. Have a great weekend everyone and take care.

Wednesday, August 15, 2007

Chemo Cycle 6 Round 2 - Cancelled

Before jumping into this reading, please see short survey to the right of this posting and the blog introduction added on August 12 2007. If you have already answered the survey, thank you, you need not do so again. The blog provides no statistics as to who has viewed the website and how often.

I met with my chemo doctor this afternoon. I described the severe difficulty I had over the past three days… fatigue, coughing, phlegm, not sleeping, muscle tightness, pain, weight loss, etc. My worst symptom is the muscle tightening and resulting pain. He said this chemo can adversely affect areas which were previously radiated. As such, it may not be muscle tightening; it may very well be the interaction between this chemo drug and where I received the highest radiation dosages in my left jaw and neck areas. Whatever it is, the end result is the same, severe pain.

He reviewed today’s blood counts and thought they looked good. He wanted to move forward with the chemo, but at a 25% lower dosage. I asked for a few extra days to recover before getting another infusion. He suggested than that we cancel this infusion and call this a completed chemo cycle. He suggested that we start chemo cycle round 7 next Wednesday with the reduced dosage. I agreed. There is obvious risk here, but there is risk in too much drug poisoning also. A body can only take so much punishment. If I were James Bond 007 in Casino Royale, I could probably take more (he took a lot sitting in that bottomless chair being beaten with a knotted rope), but I'm not. I'm just a mortal soul who has been beaten into submission. I'll tell you anything you want to know, just stop the beatings. There are no clear answers, but I’m glad at this moment in the direction we have chosen for today. The chemo has completely worn me down physically and mentally. I began to feel better today and hope to feel even better tomorrow.

Chemo Cycle 6 Round 2

Before jumping into this reading, please see short survey to the right of this posting and the blog introduction added on August 12 2007.

It is 4:30 AM and I’m feeling a bit better than anytime in the past 3 days. Something really knocked me for a loop on Saturday through to last night. It could have been the chemo. Or, it may be a flu or virus going around. Or some combination of the two. I don’t know. But whatever it has been has made me absolutely miserable. I did distract myself by reading the majority of a non-fiction book about Theodore Roosevelt, “The River of Doubt.” The book is a fascinating recount about his exploration of an unchartered 1000 mile section of the Amazon jungle rainforest less than 100 years ago. He did this after his presidency in the early 1900s. This is a recommended read.

Given how I have been feeling, I’m leaning toward delaying today’s chemo treatment. I’ve never done that before, but I don’t think I can face another set of days like the past few days. I’ll meet with my chemo doctor this afternoon and we’ll decide together what’s best. Once again, the ability to plan has been disrupted. That is a common theme in Cancer World.

Sunday, August 12, 2007

Post Chemo Cycle 6, Round 1 (side effects cont.)

Before jumping into this reading, please see short survey to the right of this posting and the blog introduction added on August 12 2007.

I was a bit pre-mature in my last posting about calling this chemo round side effects a success. I avoided the headache, but have had no more than a few hours of sleep due to general discomfort, neck and jaw pain from severe muscle tightness, and anxiety that the cancer has returned (due to throat soreness) during the past 2 nights. I have taken extra pain and anxiety medicines which have generally worked in the past but not this time. It is now 5:00 AM Sunday and I’m wide awake. I finally fell asleep at 2:00 AM, but woke up at 3:30 AM and then went back to sleep for about 30 minutes. It was pretty much the same way the night before. My mind is split between my friend who fought breast cancer for 8 years until succumbing to the disease earlier this year (wondering whether or not the long fight was worth it), thinking about trying to raise money for the Head and Neck Research lab at my hospital via a golf tournament (a huge undertaking when thinking about a big event), trying not to disrupt my family's life more than I already have (e.g., not waking up my spouse while I can’t sleep – she worries about me), worrying if I can take a short trip within chemo cycle #7 in early September for a relatives birthday/visit with a long term friend, and reading a non-fiction book about Theodore Roosevelt, “The River of Doubt.” I finished my last Michael Connolly book, “Trunk Music,” yesterday. The Connolly book was good with a few surprise twists toward the end.

This blog gives me some comfort in that it will help me remember via documentation how I felt at different points in time. I think it may also give those close to me some better insight into my moodiness and lack of wanting to communicate with them. If I can’t say something positive, I’d rather be mute on the subject. That's just my way of dealing with things. As a reminder, I'm not complaining about any of this (that's not my style), I'm just documenting how I feel. With that, I’m signing off and will probably read a bit more, so please take care.

Friday, August 10, 2007

Post Chemo Cycle 6 - Round 1

I finished my chemo about 48 hours ago. Based on the side effects experienced during the last chemo treatment, a 3-day round of steroids was prescribed for the headache and fatigue, and I was given the go ahead for a nausea drug I had used from a treatment awhile back. It helped somewhat, resulting in a light headache on Wednesday, with less fatigue and nausea. Mostly a success in my book.

I’ve been keeping detailed logs (my OCD at full force) of various activities since January 1st. I thought you might be interested in some of the statistics. I have made 61 trips to the hospital or doctors' offices. That averages out to 2 per week. The longest was a 17-hour day at the hospital, not counting the day that I had surgery and got to stay overnight. The shortest was a 5-minute trip, not including travel time, to the doctor for a Neupogen shot. These trips have racked up 3,306 miles and cost $300+ in parking fees. I have also kept a log of each medication I take, the dosage and time/date of the drug. Since December 20, 2006, I have taken 2,180 doses of medicine (+/- 1%). That’s about 9 pills, shots, or IV drugs per day. The vast majority are pills for chronic jaw pain from the surgery in July 2006 and anxiety-reduction medicine related to the disease. The rest were white blood cell booster shots, chemo, and chemo side effect alleviation medicines. About 60 to 70% are necessary for me to sleep without waking up in discomfort. (I can’t get any sleep without the drugs. With the drugs, I get a reasonable night’s sleep.) The worst chronic negative effect has been the fatigue followed closely by jaw pain when eating. I have to take a dose of medicine about 30 – 45 minutes prior to a meal which I usually don’t feel like eating anyway, but do so for the calories. Many "meals" consist of swallowing a bottle of Boost, a protein drink that I can swallow with effort. The best part of this is that the drugs usually don’t seem to affect my mental acuity. The most frustrating effect is my compromised speech.

That’s it for the day. I’m just finishing watching day 2 of the PGA championship, Tiger is in the lead. I hope everyone out there reading this is well. Take care.

Tuesday, August 7, 2007

Next Chemo Cycle Begins Tomorrow

It's that time of the month again. Tomorrow I begin chemo cycle 6. It will be followed by more chemo a week from tomorrow, then a week off. I've had this drug twice now. The ill effects kick in within a few hours and their intensity lasts for about 48 hours (headache, nauseous, feeling crappy). After that the effects dissipate over the next 48 - 72 hours. About in time for the next treatment. The past week+ has been good. I've gotten in some exercise, seen a lot of friends, and have even put on a few needed pounds. Given where I am physically and mentally, there is nothing more that I could ask for. I read or heard a slogan that pretty much sums up the life of a cancer victim recently, maybe some of you have already heard it. Slash, Burn, and poison. In non-slang terms, that is surgery, radiation, and chemo. Some people talk about the gift that cancer brings you. I don't really buy into that notion. I think that cancer can teach you some valuable life lessons, but referring to them as gifts is a bit of a stretch for me. I have no idea if this current chemo treatment is working. My next scans will be done in mid-September. I dislike the unknown, so I'm looking forward to the scans. When I see my chemo doctor tomorrow I'll ask if there is any value in moving them up to early September. These scans are expensive and once again I am thankful that my insurance company has been relatively good about the cost of my treatment, at least so far. Thanks for keeping up with my doings. Take care everyone.