1 week IMRT/Chemo under my belt, good day/bad day cycle

I have now completed over a week of the IMRT treatment with concurrent Chemotherapy. No serious side effects, I feel pretty good most of the time. As the doctor predicted, the main side effect, exhaustion, comes in cycles. For 2-3 days in row, I move around real slow. Everything seems hazy, and I usually have a headache. I spend most of the day in bed. For the next 2-3 days, my energy returns, and I can actually get things done, like update my blog, straiten out insurance issues, pay bills, etc.

I made a small mistake with my medication. One of the side effects of the Chemo is constipation. When this came on, I took some Dulcolax. My body did not like that at all. I had bad stomach cramps and gas for two days; soo bad, it would keep me up at night. I wrote to my doctor and my sister about this, and my sister pointed out that I was supposed to take Miralax, a much milder medication for this.

I also had the first blood test this week to make sure my body is handling the Chemo OK, the doctor said the results looked OK.

I have been eating OK, and exercising (treadmill) almost every day. No hair loss yet, but my scalp is sensitive to the touch, kinda feels like a dull sunburn.

All in all, so far so good.

Bad day

Had a real bad headache today. Couldn't do anything...not even nap. I hope tomorrow is better.

First couple days of treatment

I had a meeting with Dr Diaz on Thursday. I asked about the 'dose' of radiation I am getting. I am getting 180 cGy per day. They also gave me some lotion for expected skin irritation, and reminded me that my hair is going to start falling out around the treatment area. They also provided some handouts about radiation therapy. I eluded to 'a point of no return' in a earlier post, and this feeling was reinforced by the handouts. They pointed out about 5 serious health related issues that need to be periodically checked for 'for the rest of your life'. It is slowly sinking in that I will never be completely free of this.All this doom and gloom is rarely in the forefront of my mind, but it seems to eat at you. I still have panic attacks even when I am not thinking about this.

Holly and I took the kids with us on Friday to the radiation treatment.  This was a mixed blessing. We saw Dr. Marsh walking out, and he stopped and talked with us for about 20 minutes. He told us all about his family and how is moving out to Arizona. He then reassured us (including the kids) that they are working very hard on my case and was optimistic that everything will be OK. Before all that happened, the kids saw all the signs and brochures with the 'c' word. They must have asked 10 times, 'Daddy, you don't have cancer, do you?'.

The only side effect from the Chemotherapy I have been having so far is dry mouth. I have been eating OK, and my stomach feels fine. Per the doctors advise, I take the anti-nausea 1 hr before bed, then the Chemo right before bed. This works nice. I am still trying to work out with the doctor what to do about my headaches. Other than that, if I get a nap in, I am feeling pretty good. Go Bears. 

Two Firsts...

Yesterday I had the first (of 30) IMRT radiation treatments, and my first dose of Chemotherapy.
We showed up for the IMRT appointment 30 mins early, and they called us 45 mins late. That caused a lot of anxiety to build up waiting all that time. Once I got in there, they took about 20 minutes making sure I was lined up properly, then the actual treatment was only 6 minutes. The treatment is painless, and sounds kinda like a Pink Floyd Song. This pattering sound rotates my head around while changing loudness. Kinda sounds like people running around me while strumming on a washboard.   

Emotionally, there was a kind of sinking feeling, or a point of no return. This treatment should help, and might cause more serious problems. Up till that moment, I was facing that prospect. Now I have passed that decision.

The first night of Chemo passed with little fanfare too. Stood there with the pills in front of me for a couple minutes, facing the same feeling. I took them and had an upset stomach that night, but it was also a very stressful day.

A couple of posts ago, I spoke of the mask they made to hold my head in place during radiation. I asked the Nurse to take some picks...here they are:

The tape with the marks line up with lasers on the machine to coordinate where my head is with respect to the radiation. My nose is much smaller when viewed in person without the mask.

Week 0 Mug Shot

To document any hair loss/skin issues from Chemo/Radiation, here is a mug shot of me at week 0, before any treatment. I think I look better from the back, do you think I should grow a beard?

Box'o Pills

It goes from a bottle of aspirin to this:

Back from FLA - Radiation and Chemo start tomorrow

We got back from FLA today. Very nice time, great food, better weather than Chicago.

Holly and I went to pick up the Chemo pills today, and we kinda got screwed on the copay. The prescription is for 150mg/day, but the pills come in 140mg and 5mg, so they split the prescription into a 140 1x/day and a 5mg 2x/day. Well, that's all fine and dandy until they charged me two copays at $50 each. I cant complain too much, the insurance company has picked up a lot, but I need to see if there is a way around this if I end up on this for the next several months. There is also a problem with the Bactrim prescription (anti-nausea), the insurance company will only allow 10 pills per month, but the prescription is for one every day. The doctor sent a letter of necessity to the insurance company, I need to follow up on this.

The increased Keppra dose has not helped the cognitive seizures. While in FLA, we went out to eat and I had a doosie. I was feeling woozie and had to excuse myself and go outside. I was out there for 5 minutes or so with my head resting on a railing when I looked up and forgot where I was. It only took a couple of seconds to figure out where I was, but OMG, that is a weird feeling. Holly came out and got me about 5 minutes later and I was able to have dinner without any more problems.

That was the only major problem I had last week. Day to day, I just have headaches and exhaustion, but I am able to get around and seem like a normal person. I think the only thing that shows is when I have a very short, very painful headache that Holly and I have been calling 'zingers'. It feels like a fishhook pulling something in my head behind my right eye for 1-2 seconds. This happens 2-3 times a day, and when it does, I wince in pain. My son has seen this happen and becomes very concerned. I'm sure people have seen this in public I just think I am freak.

The radiation appointments are late in the day for now. We will get an earlier slot once one opens up. I'll let you know how it goes...

Radiation therapy schedule set, looks like I'll be going back on STD

After a nice weekend last week, this week was pretty hard to deal with. I still cannot sleep well, even after the doctor changed my prescription from Ambien CR to Fluvoxamine and Lorazepam. One of the things that gets me confused is that the doctors use easy to understand name brands for drugs when you talk to them, then you pick up the prescriptions from the pharmacy  and you get bottles with these crazy names that a scientist made up. There should be a law on drug names such that a) they have no more than three syllables and b) do contain the letter 'x'. Anyway, the new prescription is not working either. I feel sick and like I need a lot more rest, but my body will stay asleep for very long. The doctor also doubled my anti-seizure medication (Keppra) to 1000mg 2x/day. The radiation oncologist had  suggested that my cognitive lapses were actually small seizures, and were hoping to minimize these with the higher dose.

All of this dealing with prescriptions is another source of anxiety for me. I never liked taking drugs for anything, and usually just let my body fight off any sickness naturally. Out of all the prescriptions I have taken through this ordeal, the only one I can tell is working is the Norco pain killer. The rest make me feel like I am a pawn in the drug industry.

I also had a conversation with my boss about working from home during the treatment. He was more concerned that I have enough rest to recover and suggested that I go back on Short Term Disability (STD). So I will take at least a couple weeks off and see how I feel, then go from there. I have mentioned it before, but I will say it again. I am blessed to work for a company that is so considerate of my situation, and have coworkers who care about you and are willing to help out. Thank you to everyone there.

Next week we are going to FLA, and the treatments start when I get back.

Radiation IRMT Planning + Drug Cartel

Yesterday, Holly, Jean and I had  a busy afternoon. The doctors had to start planning the radiation treatment by putting me in a IMRT simulator and an MRI. The simulator actually looks like a cat scan machine, but they made a molded plastic face mask to attach/hold my head in the exact position. The mask starts out as a piece of hard plastic mesh with two hooks. The warm up the plastic to make it stretchable and push it over my face till the hooks attach to the machine. Wait a couple minutes and the plastic cools to a hard shell. This mask then has marks put on it to line up my head with the machine. Its pretty freaky looking, I'll have to see If I can get a picture the next time I am there.

I also had an MRI to assist in the radiation planning. BTW, I took this home and tried to compare the images to images taken back in November. I can see where the biopsy was removed, and it did not look like the tumor grew much in that time period (under 2 months).

We also had a visit with Dr. Aikens about the Chemo. We walked out of there with 100 side effects to watch out for and a stack of prescriptions. Some of the prescriptions are to counter the effects of the others. Once I get it all strait (with my sisters help), I'll post a list of these so other patients that might be reading this can compare notes.

The radiation/chemo starts on January 19th. I still to to talk to my boss at work about possibly taking time off. The doctors are saying this is up to me, and if I choose to that it will be difficult. It is also difficult for me to sit around and not work. Hopefully I can work out some 'work from home' deal during the radiation therapy period.

Calm in the storm

I must say that the past two months have been treacherous. Trying to cope with the diagnosis, doctor visits, the holidays, waiting for test results, going back to work, and worst of all, the daily headaches and exhaustion this has brought me. I have not been able to sleep well. When I wake early in the morning, I feel like I have been drinking all night...even though I have had not a drop of alcohol. I can't stand laying there in bed feeling like crap-ola, so I get up and struggle through the day the best I can. Before all this I fully enjoyed waking up early, going to work (and getting paid for doing what I love to do), spending time with the family, sleeping, repeat. Everyday was like a walk in the park on a sunny day. Recently the weather has changed to freezing drizzle blowing in my face while I push through the day. The prospect of having to face this challenge every day for the rest of my life is daunting.

But the last two days have been different. I woke up with a clear head, a sunny day. This on its own is insignificant, but the hope that another sunny day is around the corner is priceless.