September
Tuesday, September 11, 2012 11 September 2012So much for my diligence with updates... good news is I was too busy not being sick to get on the computer!
I saw Oncology yesterday and things are going reasonably well.
The good news:
- This week marks 12 weeks of remission for me - this is the longest I have sustained a remission in over 2 years.
- The chemo injections are not making me violently ill as the last few drugs did.
- My bone marrow is tolerating it beautifully (the only other drug that elicited a sustained remission put me in bone marrow failure and earned me an extra month (Christmas sadly) in the hospital fighting severe infections) and my liver is standing up beautifully.
- I'm eating about 75% of my calories at this point - the most ever since this started!
IF my next appointment in 3 months finds me in remission still, we will start discussing removing one of my central lines! (I have a port-a-cath for the IV nutrition and the fluids and meds, and I have a Vas Cath (picture a garden hose) for the plasmaphoresis treatment). The last time we needed the Vas Cath was in June and if the remission holds for another 3 months we can be hopeful I wont be needing the regular plasmaphoresis treatments, and thus we can get rid of the biggest, and scariest line I have.
The port will stay in indefinitely as I can not (and may never) tolerate even half of my daily required fluids - nor can I tolerate any sort of antibiotics orally. The port however is the one we like - it sits under the skin in my chest just below my collar bone, and when needed we 'access it' (poke a needle with IV tubing attached into it), and use it - then when it's not needed, we can remove the needle/tubing and the port is sealed beneath the skin - it means I can swim/shower/etc without worrying about it.
(It also means I can dress up and wear a nice dress/blouse without having big monsterous lines and iodine and tape showing - cause that's SO fashionable...).
The bad news: (which really seems trivial in the 'big picture')
- We talked to him about the fact that when I get my injections (Friday) I then spend between 2 and 5 days basically bed ridden. I can get up and move about but I get very sore/sick very quickly unless I stay laying down/reclining. The tiredness is indescribable - I quite literally will fall asleep at the kitchen table. We're going to change 'chemo days' so that I can feel well for the weekends and sleep away a tuesday or wednesday instead but some weeks (like last week) it drags on all week... I was finally feeling a bit better and realized it was Friday - chemo day - again. This week however went MUCH better - I slept off Sunday but otherwise was in decent shape. Anyways - the bad news is his advice was (while he was very sympathetic about it and did say some people just get wiped out - something about it being an antimetabolite and at that point his words got too big even for me) that it's most likely something I will just have to cope with. I didn't expect a 'here this pill will fix it!' reply but had hoped for at least a 'it gets better over time'. Unfortunately we've given it time, it's not improving. He gently said that I may have to convince myself that sleeping and being sick for a few days is better than where I was 2 years ago, starving to death and living on a hospital ward. Point taken.
I guess I can't complain - now that I typed that up the bad news seems pretty piddly compared to all the good news.
That's about it.
Boys are back at school... Brandon is THRIVING at the moment... just a ball of healthy, happy energy! We're trying to sort out the process of finding and paying for his next wheelchair as he's outgrown his kindergarden chair (we got 5 years out of that guy - pretty darn good!)... We maxed out our insurance wheelchair coverage getting him that first set of wheels, and the chair we want to get for him (ultra-light which means he can use it independently) will likely clear about $3500, but we're hopeful the province will cover some-or-all of the cost (not holding my breath).
But yes - they are both doing fabulously right now - school's going great, both the boys have several friends that we've slowly been getting to know (and I am therefore getting to know a few other moms and dads locally which is great - only took me 5 years...) and tomorrow Tyler has his first 'afterschool playdate' at his buddies house and is suitable thrilled (he was half asleep tonight mumbling how he couldn't wait till it was morning cause then he could say 'im going to my friend's house today!'... kid's got a more active social life than me!)
So yea.
Not fabulous - the tired/sick thing gets very exhausting and a pretty big bummer some weeks, and I am really struggling to find a way to be 'ok' with that being my new reality... but - it's nice to be focusing on problems with comfort rather than survival.
Perspective.
