Dec 2011 MRI 'Stable', Possibly improved

Appointment with the oncologist went well yesterday. MRI was "stable, possibly better". He took all my self-imposed medication changes in stride. I thought he would be upset and start being (even) shorter with me, but he was like, 'great - i'm glad your feeling better'.

I also asked him about going to a local hospital for the checkups after the chemo is done. He said their machines are much nicer, and local hospitals cannot do the advanced imaging they use. Hummm, he has a point - maybe it is worth the hour drive and $5 parking. Which is better; people that seem like they care, or people that know what their doing?

Headache Relief - FINALLY

I went to see my general practitioner two weeks ago for a couple of things, thank him for his quick Rx for a MRI, and ask him for advice on the continuous headache and where I should go for follow ups after the Chemo is done. For the follow ups, he said I can go anywhere - even the clinic he works at has radiologists and oncologists that can recognize when things are going wrong. I am leaning this way as I am not at all comfortable at Rush University, and I think a smaller organization might actually give me more attention because I am an interesting case. I don't think I would trust them with surgery, but I think they would follow my progress closer than the Rush machine. But I digress...

The BIG news is about the headaches. Dr. Dreyers first question was if I have seen a pain specialist. Well, no I haven't - I did not even know there was such a specialty (in the medical field anyway). He says, well, I can give you an Rx for something to try now, and If that does not work you can make an appointment with Dr Painnomore. He wrote me a Rx for 50mg of Tramadol....

It not like the the headaches hurt so bad I couldn't operate, but it did hurt ALL THE TIME. From the moment I woke up till I fell asleep. I started taking the Tramadol, one pill twice a day, and poof - no more headaches.

I had no idea how much the headaches were affecting my life. I was constantly exhausted, fed up, hog tied, tired, cranky, gloomy, disenchanted, well, you get the idea. The oncologist had me on Provigil to help with the exhaustion, and a SSRI 'just because'. Seems all this was being caused by the constant headaches.

I have felt like a normal person the last two weeks. I have energy to do projects around the house, and started tinkering with my hobbies again. Being sick is quite a recursive problem for me. When I am sick, I don't do the things I love, when I don't do the things I love, I get sick, repeat. A couple months ago I started tapering off a lot of the medications I was on. No more SSRI, Provigil, or Ativan. I knew these were not really helping me. I'm only taking the Keppra (anti-seizure), Tramadol, and an occasional Ambian.

I have a follow up MRI tomorrow, and the next round of chemo starts Christmas night.

Have a Merry Christmas and Happy new year.

3 Months of Chemo to go!

I finished the 9th cycle of Chemo, nothing unexpected happened. It was kind of a drag that it started the Sunday after Thanksgiving. I have to be real careful about what I eat, and what is in my system when Chemo starts. Eating small light meals does not mesh very well with Thanksgiving dinners. I had to explain this to everyone such that they don't ask a million times whats wrong and why am I not eating. What I did eat was good, and I am thankful for that.

Moving backwards, my last oncologist visit was interesting. The doctor was not there, and we just met with the nurse. The nurse is much less intimidating, seems to listen better, and is a bit more compassionate. I came out swinging about my headaches, voicing my concern how their 'man up' attitude is not helpful. The doctor has this peculiar way of dismissing our concerns while maintaining his aura of duty. The nurse fielded this by putting my situation in context. She said that some brain tumor patients experience no pain at all, while others suffer debilitating headaches. In this spectrum, I am just outside the level where over the counter medications help, and not quite at the level that would warrant narcotics. More importantly, she continued, be thankful that I am not worse off as many of their patients are. She said that I am doing very well considering my condition. She reflected back and said that the last couple MRI's were stable, and she expects (with explicit warnings about predictions) that the MRI in December will be stable too sighting my continued physical and cognitive abilities. Holly and I agreed when were walking out that answer was better than what we get from the doctor. But looking back - she gave the same answer (we can't help you) with a different delivery. I think there is a life lesson in here somewhere. I personally am a man of few words, being short and direct with others. This experience has taught me that although these means are functional and efficient, they are not the best. Adding words of hope, compassion, and encouragement go a long way when addressing difficult issues. Some of my readers face the similar challenges as I do. I can feel your pain, things will work out, and I know you can do it.

8th Chemo cycle done, challenging following week

My 8th Chemo week was pretty standard, but the following week was challenging. I usually feel better by Sunday afternoon - no luck this time. Every day last week I had severe headaches, then Friday and Saturday I had full body aches. I had this same problem back in may...
http://edslas.blogspot.com/2011/05/doctors-visit-may-3-2011.html
It went away by itself then, I'll try the same this time.

Headaches are out of control. I am going to see my regular doctor for advice. Time for my yearly checkup anyway - gotta make sure that prostate is still there.

OMG - 4 more cycles to go - next is the week after Thanksgiving. Next MRI is after Christmas.

Neuro-oncologist Visit

I got the 8th cycle prescription for Chemo today. I am excited to only have four months to go after this. Four months. I told him the Provigil stopped working, he doubled the dose to 200mg/day. Had a couple questions for the NO:

1. Should I be taking Decadron and Provigil at the same time? No. 
2. Can the increased blood pressure pointed out in the MRI be the cause of my headaches and eye pain? Probably not. The pressure increase is around the surgery site, and is probably caused by blood vessels cauterized during the surgery. Doubtful that that pressure would make it all the way to the eye.
3. Would blood pressure medication to help with my headaches? No, this  would probably cause more issues.
4. Ginseng to increase energy? Got typical western medicine response. You can try it if you want, but can't recommend dose because he is not sure what the active ingredient is, if it has one ;( I guess I'll give it a try. 

A lot of digging to try to get some sort of relief on the continuous headache. The NO is NO help. He seems to have the attitude that this is par for the course and there is nothing I can do about it (Man up!). That sucks. This guy is an expert in brain tumors. Any BT patients out there please chime in if you found anything, other than narcotics, that helps.

7th Chemo cycle done

On schedule this time, its Sunday afternoon and I am finally feeling OK. Thursday and Friday were pretty rough ZERO-energy days. I continue to have these strange dreams/sensations/nightmares where I wake up from sleep mentally but my body doesn't, like being paralyzed.  Provigil - The med I started to help get me out of a daze. The jury is still out on this. I was only taking it a week before the Chemo started, and during Chemo week I take decadron which has a similar side effect. Actually I need to ask the doctor if I should even be taking Provigil with Chemo. Thanks for reminding me. The week I took it before Chemo I did not feel the exhaustion, but I still had issues with headaches.

1 Yr MRI 'Stable'

My tumors' birthday is coming up. It was on September 9, 2010 when I had my first MRI and found out my brain buddy. Actually, we don't know when it was born, so lets call it an anniversary.
Here is the blog entry from that day:
http://edslas.blogspot.com/2010/11/first-mri.html

Anyway, my oncologist said the MRI yesterday was 'stable', as far as they can tell. The visit to the cancer mill almost went off without a hitch....except they forgot to take my vitals before seeing the doctor. I should have kept my mouth shut and saved 10 minutes.

The only thing I talked to the doctor about was my lack of stamina. I have been having a real hard time making it through the day. After a couple hours at work, my eyes feel like they are going cross-eyed and the fog I've been talking about settles over my head.

The doctor said that I can try Provigil (100mg/day). I have been hesitant to  take on any 'sustaining' medications, but this is getting out of control. I hope it helps. He then said the insurance was probably not going to cover it, and if it doesn't, go to Canada. So I was not surprised to get a call from the pharmacy saying one of my prescriptions was having insurance issues. I called the pharmacy and they said the Provigil was ready, but the Temodar (Chemotherapy) was denied by the insurance company. Ahhh, the fight continues.

Half way through Chemo, Monkeys, and Fog!

I finished the 6th month of Chemo last week. Nothing out of the ordinary, I think I have the pattern figured out. The next follow up MRI is at the end of the month, I am really not expecting any dramatic news. The oncologist flips between measuring progress with MRI's and 'symptom based treatment' depending on what questions I ask. My symptoms are pretty stable, so I am expecting a stable MRI.

I have been having a hard time dealing with daily life. The exhaustion and constant headaches are starting to wear on me. I can can handle being tired and having a headache for a couple days, a week, a couple weeks, a couple months....but only having a few good days over 6 months sucks monkey balls. I know there are monkey ball advocate groups out there who are going to chastise me, but my patience is wearing thin. Holly and the kids, I am sorry when this boil over. I try my best to keep my cool.

A fog has settled over my previously clear mind and I have lost some confidence. Throughout my career I have held some management responsibility, usually without any authority. I learned early on that authority is demeaned if you work hard at understanding everything that is going on, what needs to be done, and know who you are working with. If you have understanding, vision, and friends, you do not need authority. The fog settling over my mind is hampering two of these ingredients. This is unsettling. I have little relief on my responsibilities as a husband and a father. I hope I can hold out until this Chemo fog passes and I can get back to kickin' but. 

Chemo cycle 6 self-delayed, MRI next month

Holly and I had an appointment with the oncologist on Tuesday. An wait in the waiting room, no answer to two queries as to why we had to wait so long. No apology when we finally did get in.The Cancer mill bites again.

Standard meeting with the doctor. He checks that I have can move all my limbs and a gross check of my field of vision. I passed. Yeah!

I asked if we could delay the start of this cycle for a week. I was looking at the calendar and not only would labor day weekend follow a cycle, but I would be on chemo Christmas day. Delaying this cycle by a week starts this cycle on the Monday of Labor day and the week after Christmas. They were agreeable, and I am excited to see how I feel with an extra week of this cycle.

Then we go to checkout. I needed to make an appointment for the next month and schedule my next MRI. Now we are about an hour away - its nice to have them both on the same day. The scheduler at the chemo mill says sorry, cant do that, has to be on two separate days. I was furious, got up and left. Today I called my nurse and she was able to do it. I wish there was a way to bypass that whole scene.

So unless something drastic happens between now and the end of September, you probably won't hear much out of me.

Have a nice weekend.

Radiation hair recovery after 5 months.

As I mentioned before, I stopped shaving and let my hair grow out to see what it looks like.

Most of my hair fell out by the end of the 6 weeks of radiation,
See week 6 pics here
 And since then I have been sportn' the Mr. Clean look.  Here is what I look like today:

I think it looks freaky, but people say it looks good (especially Brian at work ;) and shaving blows chunks, so this will be my new look for a while.

5th Chemo Cycle dragging on

Well its Sunday afternoon, and I still am feeling the effects of the chemo. I would usually feel better by Saturday afternoon. I watched my diet and kept active but the chemo 'daze' is still lingering. I took the decadron steroid this cycle to hold off the headaches, that worked well. I can't seem to put all the thoughts in my head into words right now....so I'll cut this post short....

Reason for hope

In my daily googling on brain tumors, I ran across an article about new brain tumor treatments under development. It is good to know that someone is working on this rare disease, most of the funding goes to more popular diseases.

Read more here:
Brain tumor discovery could lead to new treatment

Another Migraine

Last month I had a severe headache that sent me to the doctor, today I had another severe headache but skipped the doctor part. It came on at work, and was so bad I had Holly come pick me up. There was no way I could drive.

I think that both of these episodes were a result of missing a dose of Keppra (Anti-Seizure medication). Both times I missed a dose the day before. It is pretty scary to think that I am that so dependent on Keppra that missing a single dose makes me have a migraine. I do not intend on testing this theory.

4 Chemo cycles complete

I tried to follow through with MAEB (Move Around and Eat Better) this cycle, and was pretty successful until Friday. I kept my meals small, healthy, and frequent as opposed to the normal starve and gorge. I took walks in the morning and did light chores around the house. This was making feel a little better, well worth the low cost...till early Friday when I was taken over by Chemo Daze. My energy and focus was replaced with exhaustion and confusion. This improved a little on Saturday, and today (Sunday) I actually have the presence of mind and endurance to blog about it.

I did the decadron steroid +/- 1 day with the chemo, and I can say this does help with the headaches, but also induces some anxiety and insomnia. I think I will stick with this recipe next time.

Hair Update:
I cut myself shaving the back of my skull last week giving me a dime-sized scab, making it difficult to continue to shave.  Holly had the idea to let my hair grow out and see what it looks like. I post picks in a couple weeks.

Doctor Confusion Clearing Up:
I blogged a couple weeks ago that I was not content with the description of the successive MRI readings the oncologist was giving me. I continued nagging my oncologist about this and they responded by; sending me the surgery report, the pathology report resulting from the surgery, and the radiologist will be at my next oncologist appointment. One question did get cleared up so far, part of my tumor was removed during surgery.  The surgeon, even in his official reports, says a only a 'biopsy' was taken - no mention of resection. But then I looked at the pathology report where the indicate 'how big' the biopsy sample was. The pathology report indicated the sample was about the size of a golf ball - that does show up on the MRI as a empty spot. Here I was thinking that a 'biopsy' is a smear on a microscope slide. I still need to grill the radiologist about what they were talking about when they said the tumor 'got smaller' from post-surgery to the start of 5/23 Chemo. Seems to me this was a result of the surgery, not the treatment. Hopefully all this will be cleared up at the end of the month Dr. appointment. One last note - that surgery report was hard to read. I contained commentary from the doctor about what he saw when he looked at my brain. His description contained some pretty disturbing adjectives.

Emoticons:
i colon left parenthesis lately. Before all this came about, I led a very active life. Summer concerts,  camping, biking, hiking, fixing up the car, woodworking, computer projects...to name  a few. Especially the summer concerts - there is nothing like bouncing up and down at a rock concert with a 6 pack under your belt in the hot sun. I am also an accomplished air-guitarist, the other fans surely miss me too. Now I lay in bed with my ipod, muffin headphones and some deep cuts from the bands like Yes. Not exactly lifetime memories producing activity.

I am in the middle of the Chemo forest now, and do not see the light - but I will keep marching.

Fourth Chemo Cycle

I'm in the fourth chemo cycle, 3 days down two to go. The last two days are the worst. In the first three cycles I was basically in bed for the last two days. I know laying around like this makes me feel worse. This cycle I promised myself to Move Around and Eat Better in these last coupe days. MAEB that will make me feel better.

3 Month MRI shows no growth

Today I had a 3 month MRI to check 'progress'. The doctor said there was 'no change since the previous MRI". In other words (mine)...good news, the tumor has not visibly grown and no new tumors have developed!

I asked the doctor to show me the MRI and point out what features he is looking at. No doctors have offered to do this to date, and I kinda wanted to see him explain what he was looking at. What I thought was the tumor he explained was a fluid-filled void left from the surgery. This left me very confused because I was told in no uncertain terms by the surgeon that he only took a biopsy and resection was not possible without compromising functionality. Then he showed another picture that he explained was the diffuse part of the tumor, and he explained this is where the look for new tumors to form. I could not see what he was talking about and he said that the resolution on the MRI is poor and to get better resolution the magnet on the machine would be too small to fit my head in. I have looked through ALL the images (several hundred) from every MRI I have gotten and there are much better pictures that seem to show where the problem is - but who am I to argue? If you have been following this blog, you know I went into this journey with a general disdain for the medical field. Its not getting any better. I have always felt that doctors will agree with anything you complain about, assign it as a condition, and treat you for it to keep the medical machine running. I wonder where I would be today if I never complained about my dizzy spells.....

Still Feeling O.K. on Friday

I did start taking 2mg of the decadron EVERY MORNING. I was not quick to judge on the effect of the decadron on my well being at first, but I have continued to live headache free and have a lot more energy and focus. This is great for getting things done at work and around the house, but sleeping at night is a problem. I started taking 1/2 of an Ambian 12.5mg CR at night to help this. I think I found a balance I can live with.

I have learned to take the doctors' side-effect Rx's as 'guidance' and slowly tweak it, giving each change a couple of days to sink in. Be an engineer when experimenting - only change one thing at a time and check results before trying something else.  I hope this post will help others going through a similar situation. Disclaimer - This blog is a description of my personal experience. I am not a doctor or offering any medical advise to others.

Have a nice weekend.

Best day in Months!

What a contrast. I went from thinking I was having a brain aneurysm yesterday to a symptom-free day today. No headaches, good energy, and was able to focus all day. It was nice to feel normal. Even better it is great to know it is even possible during these times.

Man Up!

I had quite an episode on Monday night. I left work early with a massive headache that came on suddenly after lunch. I laid down for 2 hours at home and it was still screaming. I talked to my sister, and she suggested taking 2 Norco (narcotic pain killers). No help at all. My head hurt so much that I could not sleep - I was up all night. About 2-3 am the I started to vomit. Not pretty.

I called my doctor at 8 am and they said to come in, probably need a cat scan to check for anything serious. Holly carted me down there and we saw the doctor and he said, 'I need the cat scan before I can say anything. Go get the scan and WAIT there for further instruction'. I clarified that he wanted me to wait in the imaging center for him....he said, 'oh yea, once the scan is done the radiologist and I will discuss the results and they will tell you what to do'. Well, once the scan was done the technician told me the radiologist was not even in the building. Lets not forget I have a screaming headache and did not sleep the night before. Holly and I head back up to doctors office and I ask at the front desk what is going on. The very nice fellow goes and checks and tells me that the radiologist should have told me that there was nothing wrong and that I could go home, but since I was here, the nurse would come talk to me, please have a seat. We were waiting there for about 10 minutes when the nurse comes out and get the people sitting right next to us - totally ignoring us. Holly and I got up an left. I had enough. The doctor calls me on my cell phone 2 1/2 hours later and tells me they just realized that they never followed up with me about the scan. He continued to tell me the scan did not show any serious issues he was worried about, so there is no need for concern. Lets not forget I have a screaming headache and did not sleep the night before. I say, well great what am I supposed to do about my problem? "Man up and plow through it" he says. "What about my headache?" I ask, "Take some aspirin" he says. I make one last plea - "Is there any other class of medication I can try?". He says to try 2mg/day of the steroid Rx. for the next 3 days.

This was another lesson in what 'Fighting Cancer' means.

Out for the count Thursday and Friday of Chemo Week #3

Its early Saturday morning, The past two days I could not do much other than drag around the house and sleep. I think I have read this is refereed to as "Temodar Daze". Let me try to explain my state of mind and body during the late days of the 5/23 Chemo cycle.

I have often said that I have an ongoing mild headache, the way my head feels on Temodar Daze adds the following side effects:

• A slight dizziness:
  I am usually pretty sure on my feet, but in the Daze I often have the sensation I am moving. No ladders for sure.
• Sluggish thought / Loss of concentration:
  This is mostly what keeps me home from work the last two days of the cycle. I am usually a very intense person when it comes to proposing solutions to any problem presented to me. In the Daze, I can walk around a talk, but my head is pretty much 'blank' of any ideas.
• My head kinda feels like it is filled with jello:
  This is more of a pain issue that occurs when I move around faster than a turtle. I know it sounds weird, but it feels like my brain is 'floating' in my head. This  gets worse as the day goes on, and towards the end of the day I am stuck in bed. 

Let me re-iterate that these intense side effects only happen the last 2 days of the 5 days per month I am taking Temodar. During these days I am able to tool around the house a little bit, and I will be able to go back to work on Monday.

The steroid I tried this cycle did have some effect on energy, but it is not worth it to me. It gives me stomach cramps. I have been trying to mitigate these cramps with small, frequent, healthy meals. Eating a bacon cheeseburger off the Weber would probably sit in my gut like a rock for a week. Fruit, granola bars, fruit, and a ham sandwich get me through the day. Then I eat a light portion of whatever Holly cooks up for my din din.

One more note. The anxiety I get taking 4th and 5th days of the Temodar is unbelievable. Sitting there, feeling like roadkill, and having to take another dose which will make me feel even worse tomorrow. This week I tried some relaxation techniques (Pink Floyd and Deep Breathing Exercises) for an hour before taking the dose. This did help bring the anxiety down and I was able to fall asleep faster.

Lastly, one emotional note. During these Temodar Daze I am laying around the house looking very sick. It really bothers me having the kids see me like this. I think it scares them because it seems things are getting worse. I have tried to explain to them that this medicine has these nasty side effects, but should make me better in the long run. Unfortunately, words do not always cover up reality.

Chemo week #3

My oncologist suggest a low dose (4mg/day) of steroids to help with my exhaustion and headaches during the week of chemo. My previous experience with steroids was not pleasant. The dose was much higher and caused extreme anxiety, I was constantly agitated and could not sleep.

I decided to try the steroids this cycle and take an Ambian CR (Sleeping Pill) at night to help the sleep in hopes my quality of life would rise during this week.

I am proud I tried a tweak to my routine, but it is pretty much a wash. I still have a constant headache, have a little more energy, but the anxiety and agitation is too much. No help having more energy if it get PMS with it.

I'm about 4 minutes away from the Temodar  dose tonight. This is the worst feeling having those pills in your hand, knowing you have to take them, and how miserable I will be tomorrow. I'll try post the next time I get out of bed.

Another miserable day at the oncologist cancer mill

I have complained in the past about the organization change at the oncologist's office, now they switched to electronic medical records and it got worse.

First off, they forgot about us in the waiting room. After sitting there for over an hour, I complained and they said, "Oh sorry - they day after a holiday is so busy, we had over 200 patients today." BS!

So then we are in the Doctors office. I did not have much to discuss, I just wanted the Rx for the Chemo and get out of there. The nurse hands me the Rx and proudly proclaims 'we electronically transmitted this to your local pharmacy". I read it over and wouldn't you know it - it was wrong - 100mg/day rather than 400mg/day. "Oh my, your right -  I thought I fixed that." The nurse says. She goes back and types more into the computer, and comes up with a corrected Rx, again stating that it was already sent to the pharmacy. Nice.

On the way home (about 30 minutes later) I called the pharmacy and asked them what prescriptions they received. I was guessing 4, they said none were received. I told them not to fill anything till I talk to them in person. I have seen this before - they fill the wrong one (even though I told them not to)  then the insurance company will deny the correct one. I do not need this.

I have a MRI scheduled for June 28. If you are following this blog, I am sure there will be more excitement then. 

Went on short bike ride - didn't crash.

Biking is one of my favorite pastimes. When the doctor said no more I was hurt. I do not have any serious balance issues, so I gave it a whirl today, just around the block with my daughter. Nothing fast. It felt great!

Next round of chemo starts in a week. Looking forward to knocking another bottle off the wall. Sing it with me, Twelve bottles of Temador on the wall, Twelve bottles of Temador. Knock one down, pass it around.......well not that part. 

Exhaustion and Tummy ache continue

I am coming up on 3 months since the radiation treatment completed. The doctors say that the exhaustion from the radiation should start diminishing now, but I am still very tired day to day. This is probably because of the ongoing chemotherapy. It is disheartening that the effects of the once a month chemotherapy last more than one month. This basically means I am going to be 'sick' for the next year. I keep telling myself  '2 down, 10 to go'. The next round starts a week from Monday.


p.s. - Check out the new History section to the right. I cant believe I made it through November, 2010.

Problems in 2nd round of 5/23 Chemo

The second round of 5/23 Chemo was not pretty. I missed work Thursday and Friday. I had severe headaches that would not go away with any medication I have, a very raw digestive system, zero energy....etc. I was in bed till 5:30PM on Thursday, and about 2:30PM on Friday. I was able to eat on Saturday, and am feeling OK today. The previous level I did not miss any work.

On the lighter side, I have some hair growing back (more like peach fuzz), but only on the left side of my head....where is was not supposed to fall out in the first place. The right side (where the tumor is) is still way bald.

Anexity going into Month 2 of 5/23 Chemo Cycle

I picked up the prescription for the Temodar (Chemotherapy pills) today. Don't tell anybody, but I only got 400mg/day dose (The Rx was for 405mg/day). The goofy insurance would have counted the extra 5mg/day as another prescription, and charge me another copay. My cheap ass was not about to pay another $10 for a 5mg pill when I am already taking 400mg.

To answer a question from the comments, the dose increased for two reasons, the first was a 'ramp up' from the initial dose, and the second was an adjustment for body weight. I should stay at 400mg/day from here out unless something goes wrong.

To answer another question from the comments concerning exhaustion, my doctor said to try other forms of caffeine, even just less coffee. I bought some caffeinated green tea and have a cup after lunch. That seems to be helping out. He also has the opinion that the exhaustion is a side effect of the radiation, not the chemo. The side effects from the radiation can take 2-3 months to subside.

Now on to the subject of this post. In the past couple of days, my appetite has taken a nose dive, my stomach cramps have come back and the metallic taste in my mouth has returned. I believe this is all from anxiety from my does going up to 400mg/day. Things were rough on 300mg/day last month. Dang rat poison.

Doctors Visit May 3, 2011

Holly and I went to go see the neuro-oncologist today. This was a basic visit to make sure I was doing well enough to continue with month 2 of 5/23 Chemo. The doctor was not concerned about the fever I had two times in the last two weeks. He said that if there was some serious underlying reason, the fever would not go away.

I also gave up coffee in a attempt to help with my headaches. My headaches are not as bad, but now I am very tired. The Doctor said to either take caffeine pills or drink more coffee to get my energy up. I need to find a happy medium.

My last and biggest concern is body aches. I constantly feel like I took a 10 mile hike yesterday. He said that this is probably a side effect of the Chemo and I should try to live with it before taking a prescription for it.

So I walked out of there with a prescription for 5 days of Temodar at 405mg/day. The dose last month was 300mg/day. This starts on Monday.

Its official! Size does not matter!

My panties were all in a bunch in my last post because my doctor was giving me a hard time about providing quantitative data on the size of my tumor before and after the 6 week IMRT Radiation and Chemotherapy treatment.  After a long talk with my doctor, and talking with my sisters, I was reminded the goal of this treatment was to stop the tumor from growing, not make it smaller. I wrote in this blog before the treatment started that the tumor has already damaged my brain. Even if the treatment totally kills the tumor, the damage is already done. The treatment is to stop any more damage from happening. I knew this, but I guess I got caught up wanting some vindication for being subjected to this treatment.

I still not like the puppy-mill atmosphere at the doctors office, and I do not think they handled my request very well, but changing doctors at this point would involve more stress than it would relieve. I'll come back to this after the 1 year Chemo cycle is complete.

I had a slight fever over the weekend, taking loads of ibuprofen to keep it down. My legs are so sore it feels like I took a 20 mile hike, but in reality have been resting a lot. Maybe I have been resting too much.

Switching Doctors?

I have had it with my current nuero-oncologist, and am looking for a new one. Since my last appointment when he said the it 'looked smaller to him', I have been pressing them to provide actual measurements, or a percentage 'smaller'. They said that this was the responsibility of the radiologist, and they would ask them. A week later, the nuero-oncologist said that the report came in, and the radiologist reported the same thing...'appears to be smaller'.

I get a copy of every MRI that I take, and they are very detailed pictures of my brain. I can run the viewing software on my PC. This software has tools where one can measure any aspect of the pictures. As an engineer, I thought it was a very strait forward request for the tumor measurements before and after the treatment, and use the difference to calculate percentage change. To make a long story short, they eventually provided some numbers with strange descriptions and basically refused to make any conclusions from them other than what was previously stated. They are basically telling me I should be happy with their qualitative conclusion even though they have the data to make a quantitative measurement. This whole episode made me very upset not only because they were dismissing scientific principals, but the whole time they were very dismissive with my concerns like I was just being a pain in their ass.

On top off all this, the doctor has changed their office location from a very personal office to a general super center where you have to wait in one line, go to a triage center, go to the waiting room where the butts of the people waiting in line are in your face, see the doctor in a tiny room with 5 people, then go back to another line.

Doctors that don't seem to care about my concerns, unfriendly office, following a recipe...I going to see what other options I have.

Other than that, I seem to be still having the good-days, bad-days schedule. A couple of days I feel good, a couple days no so good.

Doing OK

I was able to work on Friday, and actually took on a big project at home today, front brakes on the VW. Anthony was a great help working on the car. My appetite is next to nil, Holly keeps pushing food on me.

So the first week went OK. I was a little more tired than normal, and my stomach felt like I ate a box of rat poison. I am 'off' of Chemo for like 28 days now. I will just fine for the next year if this is all I have to put up with every month.

Three days into High Dose Chemo

I started the 5 days on / 28 days off 300mg Chemo cycle on Sunday night. Monday went great, I was a little foggy, but was able to work all day with little problem. Tuesday I was feeling pretty much the same. Today it hit me. I woke up at 5 am with a screaming headache, took 4 ibuprofen and tried to get back to sleep. I couldn't, and figured that I would feel better keeping busy at work. Headache would not go away. I went home at 11, took a norco and laid down. At 4pm I still have a severe headache and took some Tylenol. No luck. I feel like I got whacked in the head with a 2x4 or have a severe hangover....but just in my head. My stomach feels fine and my body is just a little sore.

Taking the Chemo pills Sunday, Monday, and Tuesday night I was a little anxious. Its hard to take these pills when you know they make you feel miserable. Taking them tonight and tomorrow is going to be really hard.

I wonder how long into the '28 days off' it is going to take for me to feel better. Please leave a comment if you have any experience here. I hope its not 27 days!

13th Wedding Anniversary

Today is Holly and my 13th wedding anniversary.

Holly, thank you so much for your support during this very trying period of our life togather. You have made this ordeal much easier to cope with and have made me feel comfortable and safe. I love you and am looking forward to many more years by your side.


Love,
Ed

Feeling good going into 1 year of Chemotherapy

Brain Surgery to get a tumor biopsy, $125,000.00
6 Weeks brain radiation treatment, $60,000.00
1 month Chemo Prescription, $10,000.00

Taking your son to the bating cages, priceless.
 Health insurance is up there too.

Being back at work, I have been kinda ignoring my medical bills, I was putting them aside and telling myself I would look at them next weekend. Did you ever notice how next weekend sometimes slips by without you noticing? I had accumulated about twenty envelopes from the hospital and the insurance company. I felt good enough to go through them yesterday. A couple were from a collection agency saying I didn't pay my bills. Recall my sister went through all this with a fine tooth comb and told me exactly what I owed. I paid that amount - what is the dang problem? Digging into it, I found that the hospital did not credit my account for the check I sent. I called the bank, they said the hospital cashed it. Need to call the hospital next week. I still have all the bills for the radiation treatment to go through. On first glance, they have charged me for $5000 in treatments while I was in Florida. Hmmmmmmm.

My point is that I am taking on some additional tasks outside of work, and have been able to get together with friends to shoot the breeze. Lets hope I can keep my energy up when I go back on Chemo this week.

First follow up after treatment

I went to get my MRI and see the oncologist today. This was the first follow up after the 6 week IMRT and Chemo treatment. It has been about 5 weeks since treatment completed. Its been a long day, I'll keep this short.

They did not have any time between the MRI and the appointment to officially analyze the  progress. After looking at the MRI for about 2 minutes, the doctor said "It seems to me the tumor has shrunk". I prodded him for a percentage estimate and he deferred until official analysis by the radiologist...should be done some time next week. If I had a dollar every time I was told that!

While he was reviewing the MRI, his PA was writing out the prescription to continue Chemotherapy. This kind tells me that no matter what they saw, I was going to go back on Chemo. The prescription is for 3x the dose I was getting before, but only 5 days/month. Its Temodar again, 300mg/day for 5 days of the month, the the remainder of the month no Chemo. This will continue for 12 months.

This was pretty much what I expected. I told him about the minor symptoms I have been having, he said these are not serious and not to worry....just keep him up to date about any changes.

I then asked him about driving. He looked at Holly and asked - "what do you think?". WOW! Holly said that she does not see a problem with that. He asked me about my commute to work - its only 10 miles on side streets. He said OK...with two conditions, stay off the expressway and do not drive when tired. I was so excited I kicked him in the face (jk, jk). The liberty go to/from work and to run to the store really made my day.

When we got home I looked at the new MRI and tried to compare it to one from November. It is clear that things have changed, but I think you need to be some sort of doctor to tell if it changed for the better. The tumor is still there but looks a little different - no bigger or smaller to my eyes. I think it is too soon to be tracking the size, I'll be more interested in this aspect a year out. For now I am happy to be back at work and driving around the neighborhood in my Volkswagen station wagon. beep beep. word out.

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.

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.

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.