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.