3 Weeks After Treatment

I have been back to work for three weeks now, and my first follow up MRI is a week from Tuesday. I am sorry that I have not updated this blog in a while. Getting back into the swing of things has been very exhausting.

Life at work has been interesting. From a performance perspective, I think I have been doing great. I have not had any lapses of reason. I have been able to study and understand complicated issues. I still get very tired toward the end of the day, but have getting in about 8 hours a day. We had some shocking news at work. It was announced that the division I have worked for (almost 8 years now) is being sold to another, much larger, company. Interestingly, I was excluded from the deal - I am going to stay with my parent company, but be assigned to another division. So most of my coworkers will go to this new company, and I will have to learn a new job. The VP of engineering explained to me that I was specifically excluded from the deal because of my health issues. They did not want to add the additional stress on me. I know this sounds outrageous for a company to say they care about me in this day of age, but I feel it was sincere. It is still weird that I will be separated from all my coworkers and not be working on the product for which I helped architect. The whole situation is very complicated, and I try to not get stressed out about it.

Now onto my health.
I continue to go through cycles of feeling pretty good to lousy every couple of days. Last Saturday we had my family over for dinner, and after that I was able to go to a neighbors St. Patrick's day O'party. No green beer for me, just talking with O'friends till 11 O'clock at night. O'MG, I have not stayed up that late in weeks.  Then this weekend, I can barley move. I went for a walk around the block last night, and was afraid I was not going to be able to make it home. I could barley lift my legs to take steps and started dragging my feet.

A couple more strange things. I seem to have developed a roaming body itch. About every 10 waking minutes, a new area of my body itches. I scratch it, it goes away and shows up somewhere else 10 minutes later. My head itches a lot (I think my scalp misses my hair), and I can understand that. But this happens on my legs, sides, chest, arms, etc. A different place every time. I need to ask the doctor if this might be a side effect of any of the meds I am taking. I think this started shortly after my dose of Keppra was increased to 3000mg/day. This doesn't bother me much, but is embarrassing. It makes me feel like a dog....oooh ooh, wait a minute I need to scratch my belly with my back leg....ahh that feels better.

Next strange thing I have noticed is body twitches. I may have talked about this in previous posts. This is very similar to how one twitches right before they fall asleep.  The person falling asleep does not realize this, the their still-awake partner does. But with me, it happens when I start resting. As soon as I clear my mind and start relaxing my body my legs and arms will experience twitching every couple minutes while I am still awake. When I release control of my body its starts twitching. I know this sounds psychedelic, but I think that my body and mind are no longer on the same sleep cycle. It sometimes seems like my body falls asleep while my mind is still awake. The seizures I had back in October / September were like my mind quickly fell asleep and went into a dream-like state, but my body was still awake. Now these twitches are like my body is falling asleep, but my mind is still fully awake. I recently have had dreams (or one might call them nightmares) that I was paralyzed. In this 'dream' I was fully awake, but could not move....even open my eyes. I kind of wonder if this was not a dream at all, but a case where my mind work up when my body was fully asleep. In the absence of the tumor I would laugh this premise off, but who knows. OK, back on planet earth this is not a huge issue for me. I am just tracking my thoughts here.

The biggest issue bothering me now is the upcoming MRI to check my progress. A wide range of outcomes exist here. Its like standing on the side of an expressway with a huge cement truck barreling toward me. There is a good chance it will fly right by, or just run over my toe...but it could also hit me strait on. All I can do is stand here, waiting, watching it approach me.
 
By request, here are a couple pictures with my new commando look. The one on the left was taken on a good hair day, the one on the right not so good. Can you tell which hair is out of place on the bad day?

Bad Hair Day

Good Hair Day

Very pleased after first week back at work

Its Friday night after my first week back at work. Going in to it, I was very concerned about interacting with the other engineers at work. Before treatment, and the fine tuning of my medication, I was having frequent losses of cognitive ability. My sister Jean suggested to one of the doctors that these might be small seizures and increased my medication. The doctor increased my Keppra anti-seizure  prescription to 3000mg/day, but I then was sticking my head in a huge microwave oven (Radiation treatment) and taking toxic drugs (Chemotherapy) for 6 weeks. I hope you can understand why I did not have high expectations.

On top of this, I am not one that sticks my toe in the pool. I just jump right in. In this spirit, and in an effort to gain some independence and get more exercise, I started taking the bus to work. Its a mile and a half walk from the house to the bus stop, then a half mile from the opposing bus stop to work. So round trip its a 3 mile walk. I did not make it all week, Holly gave me a ride one day when it was raining, and I asked her to pick me up early one day when I was not feeling well.

Monday and Tuesday went great. Wednesday did not go as well, I got a strange feeling while eating lunch and became exhausted. I asked Holly to come pick me up and took a nap when I got home. I put in a full day Thursday with Holly giving me a ride to and fro. Back to the bus today, and was able to put in a full day, but had to take a nappy time when I got home.

Other than being tired, I was able to do my job. No cognitive lapses, no seizures. I was able to come up to speed on all the projects and start investigating issues. This was very encouraging to me.

In all this I have started to realize what 'fighting cancer' means. I technically do not have cancer, but am going through cancer treatment. There is an incredible urge to curl up in a ball in bed because I do not feel good. On top of the urge to hide under to covers is a built in excuse to do so. The urge to crawl under a rock is what I am fighting. Getting back into my routine is making me realize that I have lower limits to what I can do in a day. Accepting and pushing these limits will be my next challenge.

Back to work after treatment

Today was my first day back to work after 6 weeks of Chemotherapy and Radiation treatment. Another stressful event. I work with a lot of very bright people and I am afraid that I will not be able to keep up. My boss is sympathetic to this and told me today to take it easy, and ramp up rather then diving into it.

I worked most of the day, and to my delight did not have any 'momentary lapses of reason' like the kind that sent me to the doctor in the first place 5 months ago. I had a couple of intelligent discussions, and was able to solve a problem in our software. I got exhausted by the end of the day and had to leave a little early. I think my body is still recovering and got used to taking naps.

Trying to be normal in front of strangers, and not being a drag

Holly and I went to a party at a friends house last Friday night. The party was pretty cool, the front man from the Smithereens (Pat DiNizzo) performed. I was nervous going because I knew that there were going to be several people there that were 'friends of friends' and I did not know who knew about my special condition. I do not bring up my condition in a casual conversation...it usually leads to sad stories about people they knew/know that are sick. So someone would ask 'How are you doing?'....and I do not know how to respond. If I'd say 'just fine, and you?', and they knew I was having problems, I fear coming off as callous and distant.

Then some close friends would ask the same, and I do not want to get into any details as to not be a drag at a party (aka Debbie Downer from Saturday Night Live See her here).

So I apologize if I seem distant when you talk to me in person. 

Week 6 - IMRT Complete mug shots

Here are some shots at the end of 6 weeks treatment before I went to the Mr. Clean Look:

As you can see, the radiation did not miss much. When I asked about the statements indicating that they were going to treat 1/4 of my brain, and why I lost all the hair on the top of my head, the radiation oncologist said that it was the result of pass through. The radiation directed at the top of my right brain was not fully absorbed, and so went through the left side.

Holly buzzed the remaining off, then we tag teamed shaving. Now I am sporting the Mr Clean look, minus the gray eyebrows and earring.