4 more radiation treatments to go, startring to wonder what lies ahead

Today was the last meeting with the radiation oncologist, this Wednesday is my last treatment. A new intern, Ben, talked to us for a while, it was nice to get another perspective. He said to not expect to see much difference in the post treatment MRI (scheduled for early April), and that the real story will play out over the next year, getting an MRI every 6 weeks or so. He continued that the oncologist will probably do Chemotherapy during that time. Then the chief radiation oncologist walked in. I asked him the same question and got the standard 'possibilities are too many to discuss' talk. A guess this is a nice thing about a teaching hospital....you have some access to young doctors who talk from the heart rather than a script learned over the years.

I am very excited to have a month off of treatment, I am real curious what my body/mind really feel like.

Gearing back up for real life

Well I am less than two weeks away from completing the 6 week concurrent radiation/chemotherapy. After this cycle is complete, the doctors will wait one month before taking a diagnostic MRI to see how effective the treatment has been. That MRI is scheduled for the beginning of April. The last IMRT treatment is scheduled for March 3rd, and I hope to return to work the following Monday, March 7th. The only possibility I have heard about continuing treatment has been chemotherapy one week out of the month for one or two years. I should be able to live a 'normal' life during this time. I guess this all depends on the MRI results in April.

My good days / bad days cycle continues. The past two days have been very good. No problems with my stomach cramps. My energy and appetite are way up. I have bumped up my exercise to 2 miles/day with more incline and speed on the treadmill. I actually break a sweat now. I also started going through the 1,300 unread emails at work.

Thanks to all the people that leave encouraging comments here, give me a call, and stop by. All of you have made this experience more bearable.

Week 4 Mug Shots

Well, this is not pretty, but here are some pics after about 4 weeks or radiation therapy:

Right Side

That line is probably from the baseball cap I wear every day.

Left Side

This is a good visualization of where and the extent of the tumor. The radiologist said they were going to target the tumor plus 2cm margin.

Only two weeks to go. I am looking forward to the end.

Hair loss has deeper consequences

Well this has been a tough week. I did pass the 1/2 mark of radiation, 3 weeks down, 3 to go. The only serious side effect is stomach cramps, which I think are from the Chemotherapy and/or stress. My appetite has taken a nose dive and Holly basically forces me to eat. Not eating much has brought my energy level down.

I have lost just about all the hair on the right side of my head. Last week I posted some pictures on the start of this with a note about how I did not care about it. I'd like to clarify that statement. I do not care about how it looks. What I did not expect is that the blaring bald spot is a daily reminder of my condition. I used to look at the MRI images on my computer and get depressed about how much of my brain is affected by this tumor. This was easily avoided by not looking at the images. Now every time I see my half bald head in the mirror I contemplate the situation I am in. It is going to be more difficult to avoid the side of my head than it was avoiding the MRI images on the computer.

I am also concerned about my family in this respect, especially the kids. Until now they have not seen any physical evidence of the tumor. I started wearing a hat to keep them from being reminded on a daily basis.

The Radiation Oncologist nurse said that the total radiation dose threshold for growing back hair is 5000 cGy, I am just over that at 5400 cGy, but also said she thinks it will grow back. 

Status update, notes from doctor visits.

Tomorrow, 2/10/11 I will be done with HALF of the radiation treatments. That puts the last radiation treatment at March 3rd. This is roughly the same end date for the first phase of Chemotherapy.

From there, the doctors want to wait one month with no treatment (no radiation or chemo) for 1 month, then take a MRI to see how the tumor reacted to the treatment. The MRI is scheduled for the week of April 4th. The oncologist said that he would probably keep me on Chemotherapy for at least a year, but that decision will be made the week of April 4. I am so looking forward to spring. The high in Chicago today is 15 degrees F and a low of -2. That would rock in April, temp in the 60s-70s and possibly no more treatments.

The end of the radiation/chemo will also put me back at work. I am looking forward to this too. Hopefully I will return to work the week of March 7th.

Dr.Aiken said yesterday that I should step up both mental and physical exercise. He said that I do not seem to be adjusting to being sick very well, and that stepping up the exercise should help that. He upped my Keppra from 2000mg/day to 3000mg/day due to my reports of continuing mental and new physical seizures. He also agreed to letting me take Ativan, but advised that the increased exercise should reduce the need for such.

Dr. Aiken also stressed the no driving, operating machinery (ixnay on my woodworking hobby), and added no swimming or dangerous physical activity. No driving was a drag to begin with, not being able to swim in the summer is gonna suck, and not being able to go biking or hiking (dangerous physical activities that are in the top 5 favorites) is even worse. Is there anything that is fun and not dangerous? I don't think so. Maybe I'll start knitting potholders for Christmas presents. I don't think I could make it through the summer without doing these activities, I will just have to be super-safe about it. I probably had this tumor last summer, was not taking any special precautions, and managed not to get hurt. So if you see a grown man in the baby pool wearing a life jacket and a helmet, that's probably me.

Doctor coordination and communication problems.

Sorry no humor today, just some soapbox complaining. ....

Perhaps you have read some of my older posts where I wrote about how I never had regular or frequent visits with a doctor. Eating an apple a day (the fruit, not the computer)  has kept me away from doctors up until this tumor episode. Now I am inundated with doctor visits and must communicate with them several times a month. My lack of experience communicating with doctors has made these visits difficult and almost contentious.

It would seem to me that a doctor would want to know everything that is going on and and put this new information into context for me, and make adjustments to my care as they see fit. What I have experienced is more of a functional relationship where patient describes symptom X, doctor prescribes medication for X. They act almost like a prescription vending machine. My issue is that I do not want a prescription for every little symptom I have. I would rather deal with little issues on my own rather than take 20 pills every day. I have explained this to each of my doctors, but they do not seem to comprehend this concept. So when a doctor asks me 'how am I feeling', I have to be careful to only mention the conditions I would like addressed, and not bring up issues I can deal with without a prescription. I would like to tell them everything that is going on to give them context about my general health, but when I object to prescriptions for conditions I am willing to live with they get offended. I guess that this basic disconnect is what has kept me away from doctors my whole life. Now I have a dire need to go see doctors, which is a source of anxiety. I am very grateful that my sister Jean (a RN) comes with to my appointments to act as an interpreter between me and the doctors, and my sister Carol ( Pharmacist) assists in describing what prescriptions do what.

The other drag I would like to point out in this posting is the lack of doctor coordination. One of the reasons we chose the University hospital is that all the experts are in one place. But guess what...they don't agree with each other, and I am left (with help from my family) with making decisions on who to listen to. Yesterday one doctor told me 'you should not take drug XYZ', and another doctor (from the same hospital) gave me a prescription for drug XYZ, and told me I should take it if I feel I need to. We brought up out disdain with this lack of coordination, the doctor said ' I am not going to tell another doctor what to do'. I have heard that a couple of times now, it must be code of conduct they teach in medical school. One of the doctors even agreed to be the coordinator, but the other doctors will not suggest things to the coordinating doctor because of this code of conduct. They tell patients to do two mutually exclusive things, and have the patient decide what is best.

I have people in the medical field in my family to help me through this, and I am relatively cognizant, and these issues are still affecting me. I feel so sorry for all the other patients, some mentally impaired, that get pushed through the system without the support I have. There should be someone analogous to a 'court-appointed console' lawyer for these patients, a 'patient advocate health professional' that watches out for the patients best interest and makes complicated decisions. I call the Mr. B later today and see if he can squeeze this into Obamacare.

Holly and I were talking about switching hospitals after this initial round or treatments is complete due to these and some other issues. We did mention this to the nurse yesterday and she said that is common practice for 'common' tumors/cancer. The same or similar treatment for things like breast and prostate cancer can be attained at a variety community hospitals. She continued that my diagnosis is considered rare and life threatening, and that I should stick with a university hospital. This decision is probably a year away, so I will try not to worry about it now.

New type of seizure

For the past week I have been waking up at 2am with severe body aches that keep me from returning to sleep. I have been taking 800mg of ibuprofen to resolve the aches. Last night, I awoke with the aches, took the ibuprofen and returned to bed. About 15 minutes later I started to feel a tingling sensation in both legs, starting above the knees. The sensation worked its way up to my head in about 5-10 seconds. From there, I can recall my left leg start to thrash about and my throat/nasal system was very rapidly making loud snorting sounds. I tried to speak to my wife (sleeping next to me) but I could not get any words out. I do not know how long this lasted. I woke up at 7am  with this recollection of what happened.

IMRT Hair Loss Starts at Week 2

It has been just over 2 weeks of IMRT treatments, and my hair was visibly falling out starting yesterday. I was rinsing my hair in the shower and looked at my hands. There was clumps of hair in my hands. I called Holly to show her, and she handed me a towel to wipe my hands off. Another wipe of my head with my hands, and more clumps.

Here you can see the thinning on the right side of my head, where the tumor is, and where the IMRT radiation beam is directed:

Thinning hair after two weeks IRMT

I asked my sister in law to give me a hair cut to help hide this. By popular demand, she gave me a mohawk:

  This really is not my style, so she shaved it all off:

Never mind the empty bottle of wine in the background.That was 'spilled'
after the cut. BTW, that scar on the left side is not from the surgery; Holly and I got mugged in Nassau several years ago. I took a mag flashlight across the head. Here is a shot of the scar from surgery:

I really was not happy with the final result. I think it made me look like a happy Jared Lee Loughner (AZ Shooter), so I went out and bought a wig:

I will also use this shot on the cover of my bands debut album, tentatively scheduled for release in the year 2038 since my band has a questionable existence and does not have any material to record yet.

In all seriousness, I knew the hair loss was coming and it really does not bother me. Loosing my hair compared to all the other things on the table is small beans.

Shoveling the 3' blizzard snow was not a good idea

My body has been soooo sore the the past 4 days. I suspect the Chemotherapy drugs not only put me in a bad position to do this, but is severely effecting my ability to recover. I feel like some one beat me up with a 2x4. I have been walking a mile on the treadmill almost every day without any problems, but the shoveling was over the top.

NOT A GOOD IDEA:

Exciting, kinda gross bad day

We survived the blizzard. We got a little over 3 feet of snow in the driveway. Holly and I cleared out about 1/2 of the driveway, then the neighbor came over with his king-size snow thrower and finished off the job. The kids had Wednesday and Thursday off school, both days were pretty good as evidence I was shoveling 3' snow drifts.

This morning I had a severe headache and later in the morning vomited with some extenuating circumstances. I woke at about 7 am with a severe headache, it was throbbing with my heartbeat. I took a Norco with my 1000mg morning dose of Keppra.

I made oatmeal and had 2 cups coffee for breakfast (pretty usual), was done eating by 7:30, and my headache was improving.  My Son woke at about 8:30 and sat next to me with his iPad playing games that have fast moving graphics. After 10 minutes or so watching this, I started feeling nausea and stopped watching. I got up to get a glass of water at about 8:30 and felt severe nausea and headed to the bathroom. I vomited once, very quickly...almost liked I coughed up something. I note this because vomiting in the past (usually from drinking too much beer) involved vomiting several times, emptying out my stomach. This was one quick one shot, which was obviously not the entire contents of my stomach. I felt exhausted the rest of the day, with a mild headache.

On the way home from IMRT treatment, at about 4:30, we were driving into the sun (bright light...which is one of the triggers for my seizures), and I again felt nausea to the point where I was preparing to vomit out the car window driving down the expressway. Damn snow, there was nowhere to pull over. I had my hand on the car window switch, but it never came to that. The urge passed within 5 minutes without actually vomiting. I am pretty sure if I was closer to a bathroom I probably would have vomited.

Both cases were accompanied by seizure triggers. Its about 7pm now, I ate dinner, and feel fine other than the dull headache that I have every day. I notified my radiation oncologist, they said to watch for the headache/vomit combination for it is a sign something is going wrong. This is a bit confusing because the nausea/vomiting is an expected side effect of Chemotherapy. 

Blizzard in progress, Ativan

Wow - We are having a major blizzard here in Chicago. It started snowing at 1 pm, and at 8pm a neighbor was stuck in their car in a drift in front of our house. A Neighbor got stuck in their driveway. It is supposed to snow all night.

Holly got my radiation treatment scheduled early today, so we were in and out before the snow started. I also got the weekly blood work done today too. The radiation department said that they will be closed tomorrow, so we will just have one more day tacked on to the end of the six week cycle.

This last week had had to find the right dose of laxative, the chemo causes issues in this area. Too much of a good thing can be real bad. I think I found a good balance at about 1/4 of what the doctor recommended.

I also discovered how well one of the drugs I have been taking, Ativan, works. I was supposed to take Ativan for about 30 days until a SSRI drug took effect to help me sleep. I started ramping down on Ativan, and lost all ability to sleep. I felt just miserable all day. I suspected it was the Ativan, so I took one two hours before bed. My headache and miserable feeling disappeared in an hour, and I was able to sleep all night.

Given that, I asked the doctor to stop the SSRI and just let me take the Ativan. They said this was not a good idea, and I should just keep taking the SSRI. This is very frustrating. The original complaint was inability to sleep, the doctor says to take SSRI, but Ativan for first 30 days until SSRI takes effect. I find that the Ativan not only helps me sleep, but makes me feel a lot better when I am awake. The doctor says that is not a good idea. They want me to stop taking the drug that works and keep taking the one that as far as I can tell does nothing. The doctor gave me another 30 days of Ativan to give us time to straiten this out.