Saturday, 29 September 2012

Cycle 4 and Tests Galore...

Mostly sleeping. Side effects are still there, but so far manageable; this weekend is the true test, I guess.

Last week was spent in tests, and chemo. Had a couple of tests of my adrenal system and glands on Saturday and Monday, thankfully all okay. On Tuesday I had chemo, then Wednesday I had an echo -cardiogram ( sort of like a heart ultrasound) and Thursday the pump came off.  Monday I have to go in again to get a halter, some sort of heart monitoring device to finish ruling out things.

I'm hoping it has just been the combination of things -- needing to sleep for about 3 days straight every cycle isn't conducive to enough hydration, or eating. Honestly my appetite just isn't there, especially when everything tastes different.

  Just 2 more after this one! Aiden was in his school's Terry Fox Run, proudly wearing the Beating jelly belly shirt.  He even donated the $5 he'd been saving for a treat, which surprised me. He is such a sweet, sweet little guy, and we are blessed in having awesome friends and family that have helped make this whole thing easier on him.

He wants cancer to be over, and I tell him so do I. 2 more, for this treatment... and then I guess we'll know at the December MRI how everything went. Can't put our lives on hold till then though, need to live them too!

Anyhow, laying down beckons again.

Sunday, 23 September 2012

This is Halloween, this is Halloweeeen!

If we manage the 6 cycles that means that my last chemo should be near the end of October, so as long as I can manage the cold dysesthesia  both Chris and I can take Aiden out trick-or-treating.  So exciting! I can look forward to that and Aiden 's birthday ( Nov. 1st) as the next  happy goal. Plus, around the same time our nephew Connor should be born too... Aiden is so excited to have more cousins, and we are so psyched for Matt and Jenni.

So, with that in mind, we broke down and got costumes for the first time in years!

This is, literally, the first time EVER I'm a princess. ;)  As a kid I was a campesinita ( typical traditional Colombian clothes), I was THE LIVING BRAAAAIN and the Human Fly ( lol, loved that my mom let me choose my own costumes like that) and any number of things, but princess was never in my radar.

This time I saw the Snow White and thought -- hey, who better than Snow White to come back from a life threatening crisis and overcome it? Plus, my hair still works with it, though its has been thinning out. If it all falls, I'll buy a wig, or be a stylish bald snow white. :) My loves are going as a fabulous Luigi and a very hairy pirate... perfect!

Saturday, 22 September 2012

The Goblin That Ate All My Words

Yesterday we met with Dr. J. We discussed the various symptoms and side effects I’m having,  as  the list progressively gets longer. Most of these, while troublesome, are considered to be in the range of ‘normal’ chemo reactions while on my particular chemotherapy regimen. He gave me a couple of prescriptions to better manage those, which should hopefully make cycle 4 next week easier. 

For me it has been difficult to handle some of the physical effects, but even more frustrating to deal with ‘chemo brain’ as they call it. It isn’t just a matter of my short term memory shorting out; I find that I am losing words.  When referring to something on the street  I couldn’t remember ‘road’ so substituted it for the closest thing that came to mind, which was ‘floor’. Language has been my love since as long as I can remember.  I’m a writer… where would I be without words, without the ability to express myself exactly as I need to? This part wears me down, and I’m told even after chemo ends it may be months before my brain recovers.

The one thing that really troubled him though ( and us!) have been the sudden drops in blood pressure and the passing out /near passing out. He let us know that he has never heard of it happening because of chemo, and like the ER doctor ( he had all his notes and lab tests, yay) he thought it is likely a form of vasovagal syncope.  Likely, in his opinion, a combination of the really extensive surgery ( definitely called MOAS for a reason!) and the battering from the chemo. 

There are some things that have to be ruled out that could point to more serious complications. He didn’t elaborate on those, but he did schedule a series of tests for me. The first is tomorrow (… okay, today, since it is now 3:33 am), designed to test my adrenal system to see if there are issues there. He is also scheduling a few heart tests, some next week and some whenever they can fit me in.  In his opinion its very, very unlikely… but then I seem to be the queen of unlikely things, so we need to rule things out. 

As for the chemo regimen, we continue with the same drugs and dosage, as he feels the side effects don’t warrant a change.  He will be starting me on some type of steroids after the tests come back though, to help with some of the issues.  He also agreed that 12 cycles was extremely ambitious, given the extensive MOAS it was any wonder they could give me any chemo at all. We agreed that given that there is no research on whether chemo does anything for my type of cancer 6 cycles was a reasonable goal. 

I can do that. As hard as 3 have been, if we get to the bottom of the passing out I can do another three. That’s only another month and a half. I would be done before Aiden’s birthday!  I can do that, I can do that, like the little engine that could!

That being said, we wait on tests and monitor. Next cycle is # 4 for me, which had been Dr. T’s initial suggestion in Calgary ( though he defers to the expert here, Dr. J). From here on we mostly play it by ear cycle by cycle, with the goal to try and make it to the 6th.  At the end of the day there has to be a cost benefit analysis to the whole thing --  am I benefiting from it, or is it just making my body weak all over again?

Fact is there simply is no research on it, and as Dr. J said none that he’s aware of to be made in the foreseeable future. There’s just too few of us affected, not enough research funds. 

Anyhow, he’s also started the process of requesting the MRI I’m to have in December, to see how this whole year panned out. 

I’m tired, and cranky, and not looking to be up in three hours so they can poke me some more… but if its for another month and a half only, bring it on!

Tuesday, 18 September 2012

And to the ER we go

Yesterday should've been the start of the few good days I get in between chemos. I was still tired, so I took it easy, then decided to make banana bread as a surprise for the guys ( I haven't been able to do a lot of cooking, so I thought a treat would be nice.

I got as far as mixing part of the batter, and then nearly passed out.

Luckily my mom had dropped by to visit, so she was here;  I lay down on the floor with her help to try and keep from passing out. She called Chris, who called 911; the paramedics couldn't find my blood pressure, since it was so low, so off to the ER we went.

Happily I never did pass out completely; they got me on IV, took me in to a nearby hospital while Chris came home and mom followed. Aiden had already been picked out by a friend, as he was scheduled to have a class together with him - what a godsend! They were able to look after Aiden all afternoon while we tried to figure out what's up.

The good news is that after various blood and other tests, there's no infection ( yay!); although my white blood count was low even for someone on chemo it wasn't dangerously low after they did a manual count, so I got to go home eventually, at about 9 pm.

The not so great news is that as this happened a couple of weeks ago its probably not related to stomach issues per se, as there were none this time. From what the ER Dr. said he believes its the trauma of the operation and the combination of the effects of the chemo. There's only so much my system can take, so ocassionally it sends signals to shut down.

What I -should  do- is what I did; lay on the floor until hopefully it passes. If I'm home alone with Aiden teach him to use 911 ( we have been, not fun). There were no infections, no respiratory issues, my heart is fine.... but given that its happened a few times, its likely it will continue happening.


So, I shouldn't drive. I should stay really well hydrated ( I am) and basically have a good long talk with my oncologist... but I can't prevent them.  My body is just suddenly going to drop my blood pressure and pull this sort of stunt on me, more than likely.

Obviously, I'm not happy. I have a meeting with Dr. J, my oncologist, on Friday, and we will be discussing many things. Is it the right chemo? I know its the usual for colon cancer, and many other fellow PMPers have had the same regimen; that being said, I can't go the next several months worried about going to the bathroom on my own, or whether getting up to make a sandwich might make me pass out. Is chemo even something we should continue? I know the rationale behind it, but at the end of the day Dr. J started off saying there is no proven benefit, but it was recommended.  If I do stay on chemo, should we adjust the dosage, change it altogether?

So many questions, and so far not enough answers. I haven't had my scan yet, I'm told before the 6 months date it would be too hard to tell with all the scar tissue. I don't know. I want to know if the thing is still in there, waiting. I want to know if putting this poison in my body has a point, because some days it really makes me wonder.

Autumn is coming, and then winter. How the heck are we going to manage that??

Friday, 14 September 2012

Cycle 3

That is all.
But hey, after this one is one, I'm 1/4 done, right?
3 out of 12 isn't bad.

Monday, 10 September 2012

Better Days. :)

Yesterday was our vow renewal, celebrated on our 12th anniversary.

This year was so hard, and so low at some points, that we needed something positive to focus on. We need to make GOOD memories of this year too! I don't want us ( or Aiden!) to look back at 2012 and go "Oh that was the cancer year."

No. Cancer doesn't get to take my whole year. This was also the year we got to travel by car across to Alberta, and see the Drumheller museum. The year Aiden got to see his first Calgary Stampede and spend time with his baby cousins. The year we re-affirmed our love and commitment to each other, and to our son.

Fact is, I'm still going through things. Tomorrow is cycle # 3 of my 12 chemo treatments. One quarter down!
Until my scan in December we won't know for sure how successful everything was. It could be there's new replicating nastiness in there -- but then, if there was the treatment would be the chemo that I'm doing right now. I can't live the next few months in fear and dread; I don't want to.

So,  we will push through the lows and the crappy days and weeks. I am blessed with a wonderful family, with an amazing group of friends. They have rallied around us all this while, and seeing Aiden's happy face yesterday... it makes everything worthwhile. He knows he's loved, and that there are people there for him. Not just his amazing family, but an extended group of friends that have made it possible for us to manage this year. Life is about what you put out into the world, and I am more and more amazed each day by the kindness of people around us.

I am counting on that 6 month exam to tell me I'm in the clear. I'm counting on more years next to my little guy, and next to my big guy. But you can't control life and the curveballs it throws at you, so all that I can do is the best I can --  and celebrate everything I can, build new memories.

What wonderful new memories from yesterday!  Tomorrow I go to chemo but I've loaded the photos onto my tablet, so I can stare at them all day. :)

 My sweet boy! :)

And yes, that is a Dr.Who cake. ;) Its deliciousness and the wonderful decoration was done by our talented friend Lynn. :) We then put a Tardis with Rori and Amy  up top - I'm more the reckless adventurer and Chris has always been my steadfast, amazing rock. Who better than the two of them? <3

Not ready to get on the Tardis yet, but happy to have many more adventures together.

Tuesday, 4 September 2012

Grade 2 !

Aiden started grade 2 this morning -- how exciting!
He was anxious to leave me, but I decided to come with since they were only there for about half an hour today. After he got to go spend the day in the sun with a friend ( bless you Colleen!  <3 ) and will probably tell me all about his adventures once he gets home.

How is he in grade 2 already? He had to grow up a lot this year, but what an amazing little guy he is.
This stretch, I can do this. A few more months of this, and then 2013 is upon us - and this horrid year will hopefully be nothing but a bad memory.

Still, we're working on the GOOD ones. Looking forward to being surrounded by family and friends at the vow renewal, to making good new memories to look back to as well.

Sunday, 2 September 2012

A Rough Day

Yesterday was not a fun day.
It started out ordinary enough, until I went to the washroom... and nearly passed out.  My arms and legs lost all feeling, I was drenched in cold sweats and the stomach spasms were pretty bad.

Thankfully we were able to call a couple of friends who came to the rescue and took Aiden for the day  ( thank you P&P!!), and  Chris managed to talk to the oncologist on call at the FVCC.

It appears one day of not going to the bathroom isn't a big deal to most people, but when you add that I'm on chemo and the trauma my body underwent, that one day of constipation basically forced my body into shock. Or, as I was trying to explain to Aiden later, overloaded my system trying to force a reboot ( alright, so I might have stretched the analogy there. He's 7.)

The dr. on call said NOT to go to the ER if we could avoid it; I'd be sitting there, potentially exposed to other pathogens in the place and there wasn't much  they could do for me. I had to get the bowels moving with lots of liquid and some hardcore meds ( Senokot). As Chris couldn't leave my side lest I pass out, my sister drove some over before taking off again.

It was a very, very long day. I think was sitting there hours before all feeling returned and I could stand on my own to go back to the bed. Poor Chris was just trying to support and make me feel better. The rest of the day and last night was a mix of time in the bathroom and fitful sleep.

Well, I guess we begin to see more of these effects.

The thing that gets me its that I"m not really taking must of my anti nausea pills, only the prescribed ones right around the chemo, to try and prevent constipation. I'm drinking liquids like crazy, and still, one day that my body can't process them and it goes into shock. Doesn't exactly fill me with confidence over the next few months, you know?

Late last night I had a talk with Chris and Aiden both, because they'd been so worried. It WAS scary, for me too. Aiden told me if there were days he needed to stay home from school to look after me and maybe call 911 he could do that. It nearly broke my heart!

I explained that no, thank you honey, you have to be in school. That's non negotiable. But we did teach him again how to cal 911, as well as how to call his dad on the phone. I hate that its a skill he has to have now, but the fact is better safe than sorry.

Effects still seem to start right after the pump is taken off, so hopefully today will be a much better day. We had a phone call at 7:30 am, and there was no going back to sleep for me after that, bah.

Day by day, right?