How am I doing after seizure? Ok.

This is just a small post to ease people's mind after my seizure episode on Monday.  Thanks for all the support and comments.

I feel fine, just as I did on Sunday before Monday's episode. My brain exploded, but recovered within 30-45 minutes and hasn't changed since. So other than that one event, the liver and brain tumors haven't made their presence known to me. Only to scans. Only pain is currently all surgical (from July) or diet related.

Some short points of interest:

• I had an MRI done Tue (day after seizure) that I'll find out the results of next Tue (after Easter)
• Regularly scheduled chemo on Tue was cancelled. Apparently chemo doesn't reach to the brain. The brain is a sort of "sanctuary" from chemo somehow.
• I've been put in charge of a few new doctors that will concentrate on neurological treatments: options include, but may not be limited too, or may not specifically include the following:
1. Full brain scan radiation, weak radiation everywhere. Would work similar to how chemotherapy works to dissuade new tumor growth in unknown areas.
2. Radiation surgery, surgical radiation, cyber knife, whatever you want to call it, another option is to have a multiple radiation beam (multiple weak beams) that intersect at a 3D point to become concentrated and strong. Targeting the exact location of the tumor to kill it in place. It would inactivate it and it would reside in my brain for the rest of my life, but would no longer be malignant/growing.
3. Last resort. (1) and (2) require some time off of Chemotherapy before and after the radiation treatment, so there is risk of the liver cancer getting out of control (for future possible cyber knife like treatment), but with option (3) this is much greater. Option 3 is to open up my head and surgically remove the tumor. This would cause more damage to brain tissue, and have a much longer recovery period (sans chemo). So they probably won't do this.

For those who are interested, here's the meds I'm currently on... old and new drugs:

• New: Lyrica  (aka Pregabalin) 75 mg, one tablet twice a day (8am, 8pm). This is an anti-seizure drug, with a couple of side-effects of increased appetite and some pain relief (both good for me).
• New (sort of, had it before, but not this regularly or this dosage): Dexamethasone 4 mg, 1 tablet 4 times a day (roughly 7am, 1pm, 7pm, 12 midnight). Dexamethasone is used as a nausea inhibiting steroid for chemotherapy, but for this it will be used as a anti-swelling of my blood vessels in my brain. Since tumors in the brain tend to swell blood vessels as they get greedy for their growth causing leaking in the brain and swelling.
• Old: For not having an esophageal stomach valve, and because some meds increase acid production... Ranitidine 15 mg/ml, take 10 ml once or twice daily. (I take it before bed only, but they say with the increase in lyrica and dexamethasone, I may wish to do it twice a day now.)
• Old: Hyrdomorphone 1mg/ml, take 1 to 2 mls every 4 to 6 hrs or as needed. I currently take it once every 1 to 3 days as needed. I don't take it that often and only 2 ml in one go. I have a decent pain tolerance, so I take it when it interferes or when someone nags me to take it. (Or when I get a migraine from my surgical scar from eating too much.)

 That's about it.

 Nothing concrete that they are going to do at this time. I'm on anti-seizure / swelling meds and I'm taking a small break from chemo before they begin radiation on my head.

I'll blog again once I know more.
Shane

New bad news... a bad fall caused by seizure and a new tumor

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Old bad news made public:
Ok. I'm going to reveal something to the general public that was not common knowledge (my immediate family knew, and only a couple others).

Before my latest (current) round of Chemotherapy started (5 weeks ago), I was diagnosed with the cancer being deemed terminal this time. Since it was esophageal cancer that moved through the blood stream to the liver, they said that for people in that specific condition there isn't usually a cure (since it is all through my blood instead of confined to its original location, regardless of location, could have been liver, esophagus, other... didn't matter. It is a new ballgame once it enters the bloodstream...). They have had cases where they were able to prolong life for up to 12 months, but also, (when they chose to treat the symptom instead of the cause and immediately did surgery) people that lasted as little as 3 months. On average, they say, most people have about 6 months in my condition. Of course our hope is I have longer and we chose not to make public the declaration by the doctors.

Serious event / accident that happened today:
Today, I had a seizure and passed out, falling and injuring my mid back/spine and the back of my head (also scraping my hand and getting a fat lip). The seizure attacked my control of my right arm, which after a second had a painful spasm (making me drop what I had in my hand). Then it felt like my head exploded and I remember nothing until 30 minutes later after Kaye had returned home. So the next thing I remember is she had moved me to a chair and was applying an ice pack. I probably fell back onto the open dishwasher door/tray because I was emptying dishes at the time (so I'm lucky I didn't impale myself on cutlery, which was there!)

Kaye described me as on the floor sitting up (about 15 minutes after it happened, when she got home) with cutlery in my hand, but not doing anything except looking spaced out. I was only able to respond to all her queries with "I don't understand". Another 15 minutes later (about 30 in total) I started getting cognitive function back and I remember from that point on and was able to respond to questions.

She checked my blood presure and gave me some food and drink and then we went to the emergency ward of the Milton hospital.

Hospital Tests:

1. I was then given an extensive blood test for nutrition, blood cell counts (red and white) and many other indicators.
2. I was then given a CT scan of my head to try to find out the cause of what happened.
3. I was then given an X-Ray of my back (side and back facing) to see if I had done any spinal damage. As I was in intense pain and could barely walk with a cane.

Results:

1. Blood test was good. No problem discovered. Everything within normal parameters.
2. CT scan showed a  2 cm diameter tumor in my left brain lobe. It had a slight hemorrhage in its middle (bleeding) that may have been the cause of the seizure. That sucks...
3. X-Ray scan showed nothing wrong.

FYI: I've never, in the past year, had a scan of my head. So we don't know how long its been there, if it has grown, shrunk or what... Also in the past year, I had inquired why they never scanned my head (since I was worried about it on a number of occasions) and their answer was they wanted to limit my radiation exposure to what was necessary and they had no indication of anything wrong with my head (little did they know...)

Futher events:

• I have been given a new prescription for anti-seizure drugs that I will start taking today.
• I will have to follow up with my family doctor later this week to see how I'm progressing and if the dosage of the anti-seizure drug is appropriate.
• I have been scheduled to get a portacath installed early May. It is like a PICC line, but a more advanced, less annoying version. Look up portacath on Google or Google images to see what they are. Why? I'm becoming a pin-cushion for needle injections, and with my thin veins they sometimes burst them... so it's annoying. Also, if I'm going to be seeing doctors for the rest of my (likely short) life then I want to be more comfortable.
• Tomorrow (Tue) I have my regularly scheduled chemotherapy session and visit to the Juravinsky Cancer Center. At which point, we'll show them the CT scan and blood results (we got a copy of each, since Milton and Hamilton hospitals aren't connected for records.)
• I have also been told that I now legally cannot drive. The doctor said he was obligated/required to report the seizure/tumor to the ministry of transportation.

That's about it for now.

Oh, and for goodness sake I must stress WE HAVE NOT GIVEN UP!!!! So stop saying we have (those who are)!!!! We're just planning for the worst, but we haven't given up on hoping for the best! If I had given up, then I WOULD NOT BE HAVING CHEMO! Currently it is the only viable option since it is rampant in my blood stream, so we are pursuing the only option they say should have the most benefit. Stopping to remove a tumor or two (which requires weeks/months prior-to and after surgery of no chemotherapy) would just give the rapidly growing and spreading cancer cells free reign on my system. That would just be stupid, or giving up... WHICH I HAVEN'T! So stop saying I have, I'm sick of it! And as for these reports, and what the doctor says... usually I report the facts only and leave emotion out of it. So it is not ME saying I'm terminal, it is the doctors. Doesn't mean I've given up, just means that I've put my affairs in order (just in case), and we'll see if the doctor is right or wrong.

Shane

Chemo upcoming schedule

Cancer update (2011-04-13):

Received chemo treatment again yesterday (2011-04-12). No symptoms yet. I am starting to loose some facial hair though, so I'll be shaving it off soon to reduce hair debris around the house. Weight stable for two weeks at 52.3 kg (~115 lbs) according to hospital scales. They reduced the treatment dosage amount for this next round of chemo as they want me to go the full 3 weeks this time, not stop due to reduced white blood cell count again at the 3rd week.

This was the first of 3 new weeks of treatment. Then I'll have a week off, then 3 more weeks of treatment. Making a total of 3 "rounds" of 3 week treatments, 1 round is complete, I'm in round 2 and round 3 is after the next break. So 9 weeks in total, 8 for me because I had a week off for low white blood cells. Then (6 weeks or so from now) they plan to CT scan me again to see how the tumors have responded to the treatment.

I have no other news to report. Other than I'm getting more exercise by walking more. My quads hurt as a result. Fast walking to keep up with my 7 year old on his new (used) bike is impossible (I'd have to have run or fast jogged), so it was quite a work out for an hour or so.

-- Shane

2011-04-08 lab results

Talked to the doctor today (Fri April 8th) and got lab results back from this morning's blood test.

White blood cells are up from last week Tuesday's low count. Up enough that this week I could have done chemo; so I should be good to go for next week's scheduled chemo on Tue. I was warned though that overall my count is still low. Low enough that I should avoid swimming in a public pool with my children (supervise is ok, but stay out of the pool full of germs...)

Nothing else to report. I'm feeling ok. Not super, but ok. I'm closing in on 114 lbs again. (dipped down to 111 for a while).

-- Shane