Tuesday, Dec 21, 2010

Hiya Bloggies! And a very Merry Christmas and Happy Holidays to the lot of you! :)

So, my last post here was Dec 5th... not even a weekly post. But that doesn't surprise me. So much has happened, what with the latest on the health front (will get into that in a minute), getting ready for Christmas and a few odds and sodds on the personal front (not sure I'll get into that here since I really have no idea who all drops by and reads this... and there's nothing worse than gossip starting up from something that was misinterpreted).

WARNING: LONGER THAN USUAL POST!!

Now, before I start, I must add that I have a newly groomed doglet who is, right now, swearing at me. I'm not sure what she is wanting but whatever it is, I'm obviously not giving it to her and she is not amused. It's a little early for her to be wanting to go outside, but maybe that is what she's complaining about.

Uh huh... she did seem to want to go outside to for her last pee of the evening. Not that she really needed to go but the routine is we go outside for a quick trip to the back lane, then back in, up on the bed and she gets her cauliflower floret... then she curls up and goes to sleep for the night (with or without me) ;) That is where she is now.

Hahaha, so where are we? Dec 21? That means only 4 more sleeps until the day that all this preparation has been for. Shopping, shopping, wrapping, wrapping and baking. Lots of baking, although, as of tonight I still haven't done all the baking I had planned on doing. Still, I think I'll have enough for my "gift tins" that I'll be handing out to friends and family. Meanwhile, my apartment is in a bit of a shambles! It's one thing if you have one room set aside for wrapping, bags and stuff. But when in an apartment, it seems to just take over... Arrrrrrgh! Bailey, my cleaning gal will be over on Thursday, so I'm hoping to have all the gifts wrapped, the tins packed and everything stacked up ready to put in the car by the time Bailey gets here. Then she will be able to gather all the Christmas paraphanalia and take it back downstairs to my storage locker.... packed up for another year :)

Now... where are we on the health front? Well, I suppose it's not the worst case scenerio... I have to keep reminding myself that someone always has it a whole lot worse than me... on the other hand, there are just as many (if not more) who have it a whole lot better than me. So, I guess this means I'm not better off or worse off than anyone else, right?

So, if we go back a few months... back to last September, that was when I had my last CAT scan. It was the CAT scan that was taken after the first 3 months or so of being on the oral (pill) form of chemo. That chemo (Xeloda or Capacetabine) was good in that I didn't have a lot of side affects. No nausea or diarrhea or major fatigue which are the three common side affects of any kind of chemo... and of those three, they can vary from very mild to very severe. What I DID have was extreme pain in both my heals... which was a side affect that was not common. Hand and foot syndrome is common with that chemo, where the hands and feet can blister and be anywhere from uncomfortable to very painful... but I didn't get that. I got a severe pain deep inside both my heels, which made it very difficult to walk on two feet that already suffer from pretty severe neuropathy from the first nasty chemo I was on. Well, we adjusted my medication (Lyrica) that I take for the nerve damage and by increasing that, it did seem to help with the pain in my heels... which leads one to believe that that was also nerve damage pain. The results to my CAT scan in September were actually quite remarkable (and made the heel pain worth it). Not only had the chemo stopped the growth of the tumours in my lungs, but the larger ones shrunk by 30% which was better than my oncologist was expecting. So I was on cloud 9! I was willing to put up with the pain and major challenge of walking anywhere, if the payback was the tumours in my lungs were shrinking at a good speed :)

Now, fast forward to December when I got my second CAT scan to see how the tumours were responding. I just naturally assumed that if they shrunk 30% during the first 3 months, then I would get another good 20% or more the second 3 months. Wrong :( Not only did they not shrink anymore... there were about three of them that have started growing, even while I was on the chemo! That means the cancer is not responding to this chemo... so it was a very short run where it was responding and responding well.

As my oncologist said, we are still better off than when we started the chemo in June. Although they are starting to grow, they are still 30% smaller than what they were at the beginning of June. So now we have stopped that chemo and I'm on a 8 week break so that my system can have a chance to recover from the chemo as well as have the chemo leave my body. We will need to start a different chemo... unfortunately, that was the only chemo that comes in oral (pill) form. At the end of January, I will have to go to the hospital and have a port surgically inserted where the original port was placed. I have to be honest here... I am NOT looking forward to this. It is not because of the pain/discomfort of having one of these inserted. I know that will just be a matter of a week or so of being bruised and not being able to us my right arm for much ... as for any pain, that can be taken care of with Tylenol 3s and/or Ibuprofen. No, it's more the reality of the thing. While I was taking the pill form, it was just another medication... I had to take it twice/day, so in the morning I took it with my vitamin pills, in the evening I took it before going to bed when I'd take some ibuprofen for my arthritis. No big deal.. and not something I had to dwell on. But the port is a whole different kettle of fish... no one has a port to take vitamins. No one has a port inserted just because it might come in useful some day. No, the reason you have a port inserted is to administer chemo intraveneously.

You might ask, well, if you are having chemo infused intraveneously, why not have it put in via an IV in a vein in your arm? Yes, for some chemos they will do it this way. But other chemos, when you are going to have to take it over the course of 8 or 12 cycles, it's possible one's veins may not be able to handle that much ongoing pokes. Because not only is it the intravenous, but you also have to have blood drawn the week before each session so they can keep track of your platelets, white/red blood cells, etc. to see if you are strong enough to handle another round of chemo. My veins are problem children at the best of times... if they think they see a needle coming at them, they roll over or collapse. So, having the port is definitely much more convenient... it means they can infuse the chemo without abusing my veins. Also, if I have my blood work done at the Cancer Agency, they have trained technicians who can draw blood through this same port. So, ok... I agree the port is the way to go. But I kind of panicked a bit when she said that maybe we would leave the port in, even if we stop the chemo after the standard 12 cycles... because we may need it again down the road, or if this chemo doesn't work, we'd have to change to a different chemo again. It's just a reminder to me that this cancer is not going to go away... whereas if one doesn't have the port, and you aren't on chemo, then it's very easy to convince yourself that everything is fine.

So, the chemo I'll be going on is irinotecan (for those of you up on your chemos). This is a standard chemo that is used for Stage IV colon cancer and some people have really good results from it. The side affects can be the standard -- nausea, diarrhea, fatigue (all in varying degrees and some people don't experience one or all of them at all). A high percentage of those who get this chemo will lose all their hair... which is something I have not had to deal with before. My hair "thinned" when I was on the last intraveneous chemo, but I never lost all of it, or chunks of it. But the amount of people who DON'T lose their hair on this chemo are few and far between. So, between now and Feb I have to figure out how I'm going to handle this. Do I look for a wig that I can see myself wearing? Do I just go with the hats/scarves? Do I wait until it starts falling out, or do I get it shaved off before so I don't have to witness it coming out in chunks? I know, I know... it's only hair, but it's amazing how when you are given the "What if you were to lose your hair, what would you do?" it really hits home when it now becomes "You are going to lose your hair" rather than "What if?" I don't think I really care about the hair per se... but it's about the fact that I lose control. I can't say "Ok, I'll take the chemo, but I want to keep my hair"... that's not an option when you are going to take these heavy duty toxins. And the stronger the chemo, the more it reminds me that the cancer is a strong bugger and the Chemo "Lite" isn' working with it.

I know, you all are probably thinking, "What IS she going on about??" I think those who have had cancer or are currently fighting the battle themselves understand that the whole fight is very complex. There are no easy answers and obviously the fight is ongoing and one has to fight this monster with some pretty heavy duty artillery (read toxins/poisons) to try and kill it, or at least control it.

Ok, enough of that... I will just have to figure out my plan of action pre-chemo and then while I'm on it if I do have symptoms, then how I will work around them or actually just accept it as part of the treatment and have some "at home" days where I will laze around the apartment watching PVR'd shows, catch up on reading or whatever :)

Hmmm... there were other things I was going to talk about but this post is already way too long for a blog entry. Christmas is literally 4 sleeps away, so things are pretty hectic getting ready. Tomorrow I'll be putting together toiletry packages and then making up a kajillion (ok, maybe about 20-30) sandwiches. Mimi and Nathan will be driving around handing them out to the homeless and street kids. We aren't fighting the snow and cold that Europe is, but still, we do have people out on the streets this Christmas season, so a free handout will probably be appreciated.

Christmas Day I will be spending with family in the morning and afternoon... then I will be going with my friend Steve out to his family's home in Maple Ridge for Christmas dinner. Bridget has had her Christmas grooming, thanks to Auntie Toby and she will be coming out to North Delta with me Christmas morning/afternoon. I'm not sure that she will come out to Maple Ridge. It will be pretty hectic there and she always just makes a beeline for a bedroom and we don't see her all night... so she will probably be happier to be in her own home and Auntie Toby will take her out before I get home.

I wish all of you a Christmas filled with warmth, love and friendship and a New Year of hope, happiness and health! I hope to get back here between Christmas and New Year's but otherwise, I may not type at you until 2011!!

Cheryl