So 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.  

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Well, as usual it's been a while.  Even with the updates being spread out, I like using this site as an easy way to keep my (very VERY large and wonderful) family up to speed.  Please - any family/friends who read this and can think of any family that might want to see it, send the link along for me.  I only have a few email addresses.


Anyways.


It's been a bumpy few months... lots of good, lots of frustrating.  The good was pretty awesome.  We got lucky twice and managed to plan 2 family trips that did not get bunged up with hospital admissions or sick kids.  In April (or May??) we drove to Minneapolis for 5 days and did the Mall of America/Science World/Museum/Ikea/Outlet stores/Mynards trip - we all loved it and desperately needed it.  We'll be paying the whole thing off until Tyler graduates but it was well well worth it!

Then, in July, in between blood infections and hospital admissions we managed to plan and actually pull off a 4 night stay at a cabin on Blue Lake (Duck Mt Park - it's on the MB and SK border).  4 days of beach, boat, fish and sun - it was wonderful!  I had the added perk of having just finished several IV courses of heavy duty steroids (whole other story) so the entire trip saw me HYPER and feeling awesome in the wake of the steroids.... it was good.

Unfortunately the rest of the time in between has been challenging.  I relapsed in June and spent a few weeks getting plasma treatments to get back into remission.  Then we upped the chemotherapy dose in the hopes that it will KEEP me in remission.  That finished up and I promptly developed a sepsis infection that saw me in and out of hospital for another 2 weeks.  Then I basically lost the will/strength to do anything more strenuous than lift a tea cup and turn a book page for 8 weeks.

Luckily, I have 2 fantastic little boys who are quite fine with a mom who has to trade bike rides and beach trips for story time and fiddle lessons.  In spite of my complete exhaustion the boys and I have had a pretty nice time just being together all summer.

Yesterday I lucked into a 'good day' (the first in weeks) where I could actually think about leaving the house, so Dave came home from work and we took the boys to Wal Mart to do their school shopping - shoes, supplies, and they each got to pick out an outfit, and their 6$ of allowance was at hand.  It was a lovely day.

So that's about it.

Right now I am sick.  not as sick as I have been - but sicker than usual.  The disease seems to be in check at the moment (knock on wood), so we're not sure if it's the side effects of the chemo, or something else altogether, but I'm worn flat out.  I'm maxed out on my pain meds and nausea meds etc and while I don't hurt (a blessing I don't take for granted), the net effect is that I am very stoned from the pain meds, and when im in that shape I cannot drive, concentrate, or accomplish alot of anything.  It's better than hurting, but it's a pretty miserable state to try and muddle through for more than a few days.  I'm on day 15 roughly.  Searching for that light at the end of the tunnel.

The boys head back to school in a few weeks, and while I'm thrilled for them (they are SOOO excited!!), I'm also really sad - I had so many things I WANTED to do with them - it's mid august and I have yet to put my feet in the sand at the beach 2 blocks from my house, and we planned on zoo trips, picnics, mini golf, carnivals, swimming lessons, bike rides, walks to the ice cream shop on Sunday evenings - and instead they spent a whole lot of time sitting around the chemo room, the ER waiting room, and our living room, watching movies because it was the only activity we could actually do TOGETHER.

I am trying really hard to stay positive and remember the 'fun' parts - but it's really hard to focus on the positive when the negative is so friggen stubborn and prevalent.

That said - I am extremely thankful to have had the chance to read my babies their bed time stories at least 90% of the bedtimes this summer.  For that I'm grateful.

Hoping the fall will bring me the stability that we've been desperate for now for 2 years.

Thankful for my 2 happy/healthy sleeping boys in their beds.

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Well it's time to dust off the keyboard and rejoin the land of the living I think!

Just a quick update for now - I will try to keep this somewhat updated for family/friends.


Things here are going fairly well.  I had a few incidental hospital admissions this year but other than the meningitis in January, I haven't been really SICK for a while now.

I started Methotrexate (chemotherapy drug) about 8 weeks ago now, and it is safe to say at this point my 'better' state is because of the Methotrexate - this is awesome as the side effects, so far, are not prohibitive. This is the first drug we have found even a bit of a balance - they have all worked on my disease, but the side effects were too extreme.  So far so good....

We just got back from an impromptu, budget-vacation to Minneapolis last week - it was exactly what we needed - a family escape, just the 4 of us, with us all well...  It was awesome - we just had loads of fun the entire time!

The boys are doing very well - aside from some anxiety around mom disappearing (I can't even reassure him - 3 times this year already the poor kid has either gone to bed, or gone to school, only to wake up/come home and find mom gone to the hospital for days or weeks).  But they are working through it pretty well and we're hoping things will settle down once summer gets here and they get to spend all day long with me - they will be begging for an admission by July I'm sure!

So that's that...

It's all a bit surreal - I don't remember how to not be 'sick'...  After 2 years of the 'lets figure out how to survive the week' mindset, I have no idea what to do with myself now that it's not such a focus...  I find myself thinking about things (the future - my 'career' down the road - whether we want more kids - what we want to do next winter...) that I haven't had the luxury of thinking about in almost 24 months... it's really unfamiliar and a bit hard to get used to...  But it's definitely wonderful.


So - Here's hoping this didn't jinx it - it's always such a very fine, delicate balance when things are good - it's so so easy to upset it.

Fingers Crossed...

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Well I wrote a 5 page diatribe on the past few weeks and realized it was idiotically long. Here's the Cliffs Notes version:

In November I relapsed, in December I started IVIG and TPN again. Last week my second IVIG infusion caused what we are hoping is Aseptic Meningitis (a very rare side effect - sounds right up my ally) after the "we just want to cover all our bases" Spinal Tap (Holy Hell... "some discomfort" is apparently doctor speak for 'it'll feel like we're cutting you in half with a chain saw - then the real pain will start'). I will never shed the guilt I now have over allowing them to do this to my 13 month old baby without any sedation or pain meds... My heart will always ache when I think of it. Don't allow your child's doctor (or yours) to talk you into an unsedated/unmedicated spinal tap if your child (or you) can tolerate the sedation meds - it takes all of a minute longer and some closer observation for a few hours but it's humane. I HAD sedation and it still cleared my pain scale (this from the girl who watched as her surgeon performed a deep-thigh muscle biopsy!). Barbaric.

But, as it turns out, necessary. The spinal fluid was a nightmare and was full of puss essentially, along with a bunch of other unwanted jumk. (lovely eh? pus-filled spinal fluid - excellent ice breaker).

Within hours I was diagnosed with Meningitis, admitted and the rest snowballed from there. (thankfully the spinal fluid did not have any visible bacteria, and the cultures grew nothing, it is assumed Aseptic Meningitis brought on by IVIG treatment. I'm an awesome date I tell ya.

All immune treatements were stopped until the meningitis started resolving. Thursday I had Plasmaphoresis (google it) and had a severe and terrifying reaction to the treatment... very nearly had a code called on me, spent the next 3 days violently and horrifyingly sick.

It's finally starting to improve, however my gut remains in full revolt. Haven't kept much at all down (including meds - compounding things) and rely on IV everything - fluids, fats, nutritions, antibiotics, antiemetics, narcotics, vitamins/minerals, etc etc - We wont know just how hard a hit my GI system took this go - we always seem a bit further behind after illnesses. Monday's goal will focus on alternatives to IV meds - or getting them covered.


We're working with Palliative Care to come up with an acceptable arrangement that keeps me at home. Hoping for things to improve once we have them on board (This is not Hostice care which focuses on helping people/families who are dying navigate the system in a manner that keeps their priorities on the foerfront; Palliative care is 'comfort care' - they focus on making patients comfortable and coming up with solutions that work for everyone... terminal or life-threatening/life-limiting diseases are all open to Palliative input. I'm hanging my hat on them.

Tomorrow will be a better day. It HAS to be.


Thanks for popping by - Family/friends, feel free to pass this along to others I may have missed!


~K

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