Well I've had a couple of crappy weeks...

Not great news,

3 weeks ago when I was weaning off dexamethasone. I got a few of those pimple like pus things on my hand... so I do what I always do with pimple like things (because its habit and I'm dumb), I popped them. Well, they got infected, I drained them with an alcohol sterilized pin (because they were two big to pop normally, and I only had one hand to do it with... ever tried to pop with one hand? Its hard.) Had to do that twice... seemed to work, no more pus was vsible, but they continued to get bigger and quite painful. So two Fridays ago, May 20th (I had just started Chemo the Tue 17th of the same week) I went to see the family doctor. He said they were still infected and that I required antibiotics now. Great... so he prescribed me with a weeks worth of antibiotics.

New week, 4 days into the antibiotic on Tue May 24, the doctor finds out about the infection and cancels Chemo treatment because they don't want me in the hospital because my white blood cell is too low and possibly causes the infection to run rampant in my blood stream. So no chemo that week. Ok, so antibiotic is slated to finish that Friday the 27th. Wed May 25th, I started getting cold chills and a mild fever. So I took Tylenol for the fever and it went away (while under drugs). By Fri the 27th I'd developed a dry cough to go with it and a pain in my lower lung area when I coughed.

Weekend of 28th and 29th. Kaye decides to take me to the emergency ward of the hospital once my fever was demonstrated (I couldn't prove I had a fever before Sat, because she always wanted me to check after I'd medicated myself, bad timing). Primarily because a prolonged (now 4 days) fever is bad for a Chemo patient. So Sat they did a blood test and an X-Ray of my chest. They didn't find much, possibly something in my lung but I was discharged with a "just in case" antibiotic if it didn't go away in a couple of days. However, the next day, an enterprizing doctor decided to relook at my charts and asked me to come in for more tests. They decided I should take a CT scan. I did. He then decided I had the start of pnemonia in the bottom of my right lung and that I should start my "just in case" antibiotic right away.

He was glad I didn't have a "leak" of air from my lung. It turns out that's why they called me in again the 2nd day. They confused my new "stomach" for a leaked air pocket behind the lung and thought my lung was punctured or something. Go figure.

So here I am, another Tue (May 31,2011) and again Chemo is cancelled due to infection. Not a good track record.

To top it off, I had an appointment with the eye speciallist and they have decided after the FA (angiogram of my eye) that they still don't know what is in my eye. They were disappointed that the sack on my retina wasn't leaking, then they would know it was water/fluid. Well, it isn't leaking, so now I have to go to Princess Margaret Hospital in T.O. and visit the Ocular Oncology department to get a higher resolution angiogram with equipment that they are apparently the only ones in Ontario that have this equipment. And they are going to definitely rule out if the blob on my retina is a cancer lesion or not. God I hope not...

Hopefully this week will go as follows: I'll have my Birthday on June 1st... while getting a CT scan at Juravinski cancer center... fun stuff. Then I'll continue to take my antibiotics and the pnemonia will take a hike. Then next week I can start Chemo again... hopefully. I'm definitely concerned with the amount of time that my liver lesions have been getting as a break. I don't want the cancer to spread elsewhere... stupid infections... ruined my plans.

So how's your couple of weeks been?
-- Shane

Withdrawal sucks...

Well, I've been off dexamethasone since Wed.

Now I'm into the withdrawal. Headache is constant, started late Thu. ... Hydromorphone helped, but it has a constipating effect. Combined with I was stupid enough to have tapioca rice bread which is made from yeast. So, it turns out that that bread combined with hydromorphone equals my digestion stops. So, I couldn't eat for 7 hours while the laxative took effect. Then things started moving again so I could eat.

The headaches are accompanied by dizziness. I made supper for the whole family (stew) with lots of chopping while dizzy and head-achey the whole time. No more hydromorphone for me. I'll deal with the pain in my head my own way (ignore it).

Looking forward to initializing my family's play all day all summer passes for the 5 of us to Ontario Place. It opens this weekend. Also to the Cogeco's service guy finally getting here... *wait, wait* ... He's supposed to increase my internet speed by 3x (30 Mbps) and overall download capacity to 125 GB / month. Sounds good to me. :-)

-- Shane

After radiation chemo starts today.

Tuesday (which is today) and next Tue I have chemo all morning. We're starting to work on the liver tumors again. Chemo is only the one injection per week. Paclitaxel is the chemo drug of choice at the moment and is the only one I've taken so far this year, so this is a continuation of the treatment from before the brain tumor interrupted.

No other significant news regarding the cancer to report. I guess other than no side effects from the radiation surgery. (Yay.) There were some side effects from the dexamethasone withdrawal. Namely mood swings, more emotional than expected, only slight headache (I thought this would be worst, so slight is good), slight depression for only one evening (which is totally unlike me, so Kaye and I know it was the drugs... so I had lots of sugar which made me very happy [drank a large bubbly, don't know the flavour, pop], but aggravated my [July] surgically induced reaction to sugar ... gas ).

Shane

Weekend of rest done. Weaning starts.

Well, the weekend of rest went well. No side-effects. Everything in the clear.

Radiation
The follow-up meeting with the radiation doctor stated that I am done radiation for this step. The weaning off of the dexamethasone begins Tuesday (tomorrow). It should take about 9 days to wean me off of it. Aggressive weaning as they say I'm still young and should be able to handle it. If I have sever head-ache, then to go back to previous step of the weaning and start again (3 day cycle of 3 cycles of weaning = 9 days, or more if I have to back-track... not bloody likely! I'll tough out a head-ache any day rather than be on this stuff any longer than I have too!!!)

I have an MRI follow-up in 1 month. To look for new cancer growth, and to see the blood vessel health around the previously killed tumor.

Seizure - Drivers License
I've received a referral to a brain doctor (Neurologist?) that will be tracking my Seizure activity (or lack there off) and control my seizure drugs going forwards. This is a requirement if I ever want my driver's license to be re-instated via a medical statement of mental fitness.


Chemo
Tomorrow (Tue) is my lab work and meeting with my Chemo doctor. She will assist me in continuation of the treatment that began and was so rudely interrupted for my liver cancer. While ultimately I want to pursue radiation surgery (CyberKnife) for the liver cancer as well, I need the cancer to remain until we find chemo that works on esophageal cancer that has moved through my blood stream to my liver (and I guess my brain). Without finding a chemotherapy source to kill the microscopic cells, then I'll be doomed to repeatedly get cancer popping up, and eventually it will be in my lungs and bone tissue among other places. This must not happen!

So, the liver cancer stays as a sign that the chemo drug they have picked has any affect at all on this genetic strain of cancer. If the cancer shrinks, then we have a working chemo, and we can then quickly pursue the CyberKnife for the liver cancer.

So, with this method, I can win the WHOLE WAR... not just a few battles. So far, I've won two battles: 1) esophagus, 2) brain. But if I have 500 battles left, and I lose most of them, then the war is lost. My goal is to win all battles, and the war, and to reduce the number of battles to the bare minimum (I have at least 3 battles left, which can all 3 be handled in 1 CyberKnife session, but there could be more... thus the chemotherapy to eradicate the unknown.)

Overall, I feel good to have the brain thing taken care of. I felt so good that last night I ate lots of food and stayed up until 6am (kids get up at 7am). Yes that was dumb... I won't be doing it again. But I was wired and happy so I couldn't sleep anyway.

-- Shane

CyberKnife radiation surgery done. Uneventful. Went well.

CyberKnife radiation surgery done. Uneventful. Went well.

No pain, symptoms of any kind except from laying in one place for 1.5 hrs, the back of my head hurt from being stationary too long. You don't feel the treatment at all. You don't feel after affects. The brain has no pain receptors in it.

I'm just tired and will be taking a long nap now.

Next week I have a follow-up appointment on Monday to discuss how the treatment went and weaning me off of dexamethasone over the next week or two (can't just go cold turkey, and there may be residual treatment swelling that it will help with over those two weeks).

On Tue I have labwork and an appointment with my chemo doctor to discuss the next steps / resumption of treatment of the liver tumors.

-- Shane

Portacath installed today

New Port
I had a portacath (aka port) installed today. They gave me a Bard Power Port model which is a newer model that can take "more" than the average port, like CT scan die etc. A port will act like a substitute vein for me, so that they can stop poking my veins and bursting them (since I have small veins, it happened more than it should). A port is an improvement over a PICC line as I can shower normally with a port (PICC required covering the site with a plastic bag and elastics) and a port will not require weekly bandage replacement (no bandages, except for the first week of healing, see image below, port is below the skin and will just be a bump).

The port, once I heal, will just look like a bump under the skin. Here's a Google image of a port I found in a male chest that "may" be representative (I won't know until mine heals) of what mine might look like... minus the nice muscled chest of course. ;-)

Upcoming Radiation Surgery (CyberKnife)
My CyberKnife treatment is scheduled for this Friday, May 06. Yay! Click the CyberKnife link to get detailed information about CyberKnife. There are only 3 in Canada, and the Juravinski Cancer Center where I've been receiving treatment for the past year is one of them, so no travel. Yay!

So in a few hours, the tumor will be dead. There will be residual swelling from the treatment and "possible" side effects (like another seizure) due to swelling until the brain calms down from the procedure. This recovery could take a few days.

My family and I will not be available over the weekend. It will be a time of rest.

Rant
Dexamethasone (the anti swelling steroid) is evil! I can't sleep properly (won't let me get more than 4-5 hrs sleep in a night), it is causing fungus growth (aka thrush) in my throat, lungs and acne on back/chest. It has caused a blister/water sack on one eye's retina so that I have slightly impaired (annoying, but not true impairment) vision in that eye. This has impaired my moods, judgement, disposition. I can't wait for the radiation treatment to be over so that I can get OFF of Dexamethasone! *** End of Rant.

Regards,
Shane