2011-10-28: Seizure review

A bit late, but here's an update on the seizure from last weekend.

Around 3:30pm October 23rd, 2011 was my 2nd ever seizure. It happened at Winners in front of Zoe (my 12 year old daughter). Long story short, I seem to be fine now. No side effects.

Long story made long, here's more details. I had no head-ache or other warning. I was fine, just looking for clothing for Zoe. Then my right hand started shaking. When I told my hand to go back to the handle of the shopping cart, it ignored me and started rising (same symptom as in April 2011). Then I said to Zoe, "Oh oh, I think I'm having a seizure." I then started to get closer to the floor knowing what would come next. (In April, I was fully standing and fell back onto my open dishwasher door then onto the tile floor giving my back and head a couple of bruises.) I managed to get 3/4 of the way to the ground and lost complete control, falling the final 1/4 distance to the floor onto my back. I could still hear Zoe say, "Daddy? Are you faking?" I tried to respond but couldn't. Then I felt my whole body get wracked by electric impulses. Like I had just stuck my finger in a socket and felt the tingling over my whole body. I then lost conciousness.

From what others have said, the seizure lasted about a minute. I bit my lip (hard, with blood) and frothed a bit at the mouth. That's when Zoe realized I wasn't faking. A passer-by called the paramedics and the store manager called my wife (Zoe knew our home number). I remember starting to come too on a stretcher still in the store with the paramedics, my wife and Zoe around me. I remember them asking questions but not being very helpful with answering them. In the ambulance on the way to the hospital I regained cognative abilities enough to answer all their questions, though my answers were slow at first. By the time we reached the hospital I had pretty much recovered. It took about 15 minutes to recover in total so everything happened pretty fast. In April, recovery took about 30 minutes. There was no witness to April's seizure, so we don't know how long that lasted.

At the hospital, we wanted to know what happened. When they found out I was in paliative care, everything became optional. Do I want to be resussitated (CPR) if required? Yes. Do I want a blood test? Yes. Do I want a CT of my head? Yes. OK, then we had to wait 5-6 hours for the results as we sat in the hospital twiddling our thumbs (we didn't come prepared with books or other ways to pass the time).

The lab work was inconclusive. The CT showed no new tumors (just the two we already knew about). April 2 cm tumor has shrunk to 1 cm. The later 0.8 cm tumor has shrunk to 0.5 cm. However, there was still noticeable swelling surrounding the 2 cm tumor area. Since the 2 cm tumor was in the left brain (which controls the right side of the body) it makes sense that its swelling was likely the trigger for the 2nd seizure.

After discussion with my oncologist, radiologist, and an attempt to get in touch with my neurologist (unsuccessful, apparently he got kicked out of his office by the city for running a business in a residential area... oops) we decided that for the next 4 days I'll go back onto 4 mg of dexamethasone per day to reduce the swelling in my brain, in my liver area (under floating ribs) and in my mid back (last two areas are causing major back pain lately).

I've spoken with my new occupational therapist provided by CCAC Halton. She suggests that a "lift chair" may assist with lower back problem. It is like a lazy boy reclining chair, but provides electric lift out of the chair. They also gave me a shower stool to sit on, so that I'm at less of a falling risk in the shower as I get more fatigued and in case I have another seizure.

Nothing like the feeling of aging extremely quickly. Kind of sucks.

Regards,
Shane

2011-10-18: exercise

Exercised twice last week at home. Then did a karate class on Monday. Well, from my black belt perspective I can say it was a very tame class, one that most white belts would wish they could have. However, from someone coming off a year and a half of chemotherapy, I must say that I'm in a world of pain right now. Not unlike when the black belts were "training" me as a brown belt (torturing me would be more appropriate). Just goes to show how much muscle I've lost and how out of shape I've become.

We'll see if I'll have the bravery, or foolishness, to attend class again tomorrow, or postpone to Friday's class instead to give myself more time to recover.

-- Shane

No more chemo, or anything else...

I'm free and clear of treatment starting now.

Meeting with my chemo oncologist says that they have nothing left to treat me with and at this point with my advanced progression being larger than their threshold size, they are reluctant to perform other treatments.

That's not to say they can't perform other treatments, just that if they did, they would have to charge me for it out of my pocket and the hospital would no longer pay for the treatment. FYI: in case you didn't know, each treatment goes before a board of directors for approval of cost from the hospital's budget. It is not paid for by OHIP or by my insurance company.

So, at this point I either let nature take its course, or I bankrupt my family in the search for people willing to deal with massive tumors. Or I try things like Essiac and see if there's anything to the hype that it is a cure for cancer... somehow I don't think so, but apparently it doesn't hurt so I might try it anyway.

So that's the status. If nothing else happens to change the current trend of tumor growth, I figure I'll be lucky to see the end of my kid's school year. But that's my guess, not anything like an accurate estimate. So take it with a grain of salt as they say.

Now that I don't have to worry about chemo destroying my muscles and consuming my nutrition. I think I might take up Karate again. Now that I can repair muscle tissue after its damaged. So, like Terry Fox, I'll go out jogging. Tho he's a much greater man than I will ever be.

-- Shane

2011-10-04: Results of CT scan, not good

Update:

• Had to take dexamethasone (half of 4 mg tablet) on Monday and Tuesday for headache / brain swelling.
• Tuesday night, didn't get any sleep at all. Wednesday attempts to sleep during the day failed.
• Wednesday night (Thu morning) managed to get a good nights sleep
• No headache on Wed (even without the sleep), so no dexamethasone (also no dex. on Thu.)

CT Scan of neck to pelvis area:

• Right lung, up to 8 nodules noted. Largest is 8 mm. Many nodules are 2 to 4 mm larger than last scan.
• Left lung, up to 4 nodules noted. Size not indicated, so smaller than right lung nodules.
• Liver lesions have increased in number
• Largest liver lesion in left lobe measures 7 x 5.2 cm
• Largest liver lesion in right lobe measures 5.5 x 5.4 cm. 
• There is a new soft tissue that is likely a new lesion / nodule on the left paraaortic lymphadenopathy. (aka a lymph node near the main aorta).
• Good news: Stomach and intestines are fine. No mediastinal, hilar or retrocrural lymphadenopathy (sounds good, don't ask me what it means). No pleural or pericardial effusions. No abnormal axillary lymph nodes detected. Nothing in the spleen, pancreas, adrenal glands or the left kidney. Right kidney shows some nodules that aren't growing and are likely cysts. No abdominal or pelvic lymphadenopathy. Nothing in the urinary bladder, prostate or seminal vesicles. No free fluid in the abdomen or pelvis. Small and large bowels are clear. Nothing in the bone (Yay! I hear bone cancer hurts a lot.).

 So good news! I have areas that are still without cancer! Wahoo! ...

Well, the blood work came back good. My liver and other organs are all still functioning. I apparently have lots of lung and liver left, so I'll be around for many months still. However, my main doctor wasn't there today, so I can't discuss new alternatives, just the CT and lab work results.

So no chemotherapy today, as it isn't working. I've scheduled a new doctor's appointment for Tuesday with my actual doctor so that new treatments can be discussed. Or I just go treatmentless and let nature take its course.

We'll see.

Regards.
Shane

2011-10-04: less side-effects?

Morning... headache is gone, Yay! That means last night's emergency dexamethasone dose helped. Damn! (Yay?) That means I'm not free of the stuff yet. Sigh...

-- Shane

2011-10-03: more side-effects ... (more dex)

I can't believe I just voluntarily took more dexamethasone... The headaches are too much, must reduce the swelling in my head...

-- Shane

2011-10-03: more side-effects

End of Warning:
My speech filter is back in place. My last dexamethasone was Saturday.

New side-effects:
Now I'm dealing with headaches (took Motrin [ibuprofen]), dizziness and fatigue. I spent most of Monday passed out on the couch to be near my sick son who watched TV all day under a blanket (also on the couch, but the other end of it so I don't get sick). Half of that was hooked up to the hydration I.V. pole.

Other:
Supper time, I feel a bit better now. Well enough to make tacos for dinner.

You can visit if you wish, but I'll probably be talking slowly and looking spaced out. ;-)

Tuesday Oct 4th:

• I have a torso CT scan to check on liver/lung status 
• and lab work.

Thursday Oct 6th:

• I have a doctor's appointment with the Chemo doctor, 
• and possibly chemo after the appointment.

Regards,
Shane