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.

Holiday Update

It’s been two week since I began my new chemo regimen. The past two days have been good, almost back to how I was feeling prior to this newest chemo cycle. I started working out again yesterday after a week off, always a good sign. I have one week until my next chemo round. I had one minor health success this week. A white coating that has been on my tongue for about a year is 95% gone. I can’t tell you the amount of time and energy trying to get rid of this stuff… brushing, scraping, multiple medicines, many different rinses, and visits to more than one oncology clinic. Nothing worked; it was frustrating! I was told that it was harmless bacteria, but nonetheless, it bothered me. I suspected it was a combination of my nutrition drink and a lack of saliva. My salivary glands are almost completely shot due to the radiation treatments and surgeries. About 5 days ago I began using an over-the-counter mouth moisturizing spray. The white coating on my tongue is practically gone. Poof, like magic. I’ll have to ask my doctor about this next week to make sure it is safe to use, but for now I’ll celebrate the small victory.

The holidays for me have been filled with friends, family, and a lot of good wishes this season. I wish you all my best and a HEALTHY and happy new year.

Chemo Update

Hi. I’ve received a lot of e-mails and a few terrific comments posted on my blog from my December 13th posting. Thank you to everyone that has checked in, provided insight into some of their own experiences, or is just thinking of me and wishing me well.

Here’s the chemo update. Avastin, a newer chemo drug, was administered 8 days ago on December 11th. I also began taking the daily Tarceva pill, another chemo drug, that same day. This stuff has kicked my butt. Side effects in order of discomfort so far have been: a severe debilitating headache lasting about 36 hours (almost gone now), toe/foot numbness (seems to be diminishing), fatigue (it kicked in about the time of the headache), severe skin rash on my face, loss of appetite, and then a few more minor ailments. As I write this, I’m feeling tired, but okay. I spoke with my doctor’s Physician Assistant earlier in this week. She and my doctor are hoping that these are initial reactions to the new drugs and that they will diminish. Guess what? I hope they’re right! Time will tell. As I’ve said before, on paper, this looks like a promising path to a cure, but I have to be able to tolerate this drug regimen. The targeted delivery duration of this drug cocktail is 6 – 12 months. My next Avastin dose is scheduled for January 2nd, once every three weeks.

That’s it for today. Take care everyone.

December 13 2007

Published at 12:01 AM CST on 12/13/07.

Hi. I’ve been waiting to write about this day for the past 2 – 3 months. It has special significance to me. One year ago today I had a follow up visit with my surgeon to review the results of my latest CT scan w/contrast. The scan showed five cancer hot spots; they were all in areas which my surgeon felt were inoperable. I thought to myself, “how the hell did I get here?” Five months and one day earlier on 7/12/06 I had gone though an incredibly difficult surgery. To review the bidding, the surgery took twelve hours, removed body parts, took body parts from two places and put them in other places, put me in the ICU for 2 days where I was sure I was going to die, then another 7 days in the hospital. I had a tracheotomy for about 4 weeks (that was torture) not to mention a number of other tubes. My family and friends were incredible during my slow recuperation. Fast forward to 12/13/06, I showed no evidence of disease for five months and 1 day following that surgery. Now, here I was again! I was back in my surgeon’s office with five friggin cancerous hot spots. I asked him the question that many, although not all, cancer patients ask their doctors. What’s my prognosis? If you think about it, it’s not really the question that’s tough, it’s the answer. He said I should be thinking in months, not years. I guess that’s an easier way than saying soon. He said he had an obligation to mention the potential use of the palliatative care unit at my cancer center. I’ve written about this before, but to revisit it, that’s the unit that tries to make you as comfortable as possible until death. Cure is not their goal. My surgeon also suggested a visit with my chemo doctor. At this point in my life on 12/13/06, I had just begun getting my life back together. My speech was coming back strongly, my strength was back due to an aggressive workout program, my golf game was beginning to improve, and I was considering going back to work in early January. I deluded myself into thinking that I was actually going to escape and leave Cancer World behind. Good bye and good riddance. I had been told once before that I had a few months to live. That was in June 2006 when my surgeon said that without the surgery, I would die before yearend. By our conversation, I could tell that he believed it would be significantly before yearend 2006. With the surgery, there was a 15% chance of a cure. I left my surgeon office on 12/13/06. Given the odds, I was disappointed, but not surprised. I then met with my chemo doctor that same day. It seemed like a better choice than the palliative care unit. On 12/20/06, I began my third cycle of chemo. Chemo continued for almost 9 months until 9/12/07. One might think that I have to look these dates up, but I don’t, they are etched firmly in my mind. The chemo was brutal during about 50% of this time. Fatigue was the primary culprit. Limb numbness was also high on the list of why one tries to stay healthy and avoid chemo. I had six different cycles of chemo during this timeframe (dozens of rounds) and they were successful for the most part. In June and in October 2007 I had two more surgeries to remove new cancer growths (they were not part of the original 5 hot spots that were on the scan on 12/06). The surgeries weren’t trivial, but certainly not on the scale of the one on July 12 2006. It’s been a rough 12 months. I’ve tried putting my energy into being a good father, being more generous, and keeping myself healthy. Some of these goals have been more successful for me than others. I’m glad I’m still here a year later. I’m happy for the family, friends, doctors, care givers, and researchers that have stuck by me. THANK YOU again and again and again, I couldn’t do it without all of you. I’m hoping this new chemo regimen that I began yesterday will result in a cure. On paper it shows promise for my specific disease. Hope is key to cancer patients that haven’t given up. I hope this coming year is a bit easier than the past 12 months and I hope I’m here and feeling well on December 13 2008 so that I can write this story all over again one more time.

Take care everyone.