Half the Energy, Twice the Spunk

Well my last fatigue driven blog entry was pretty flaky and disjointed, so I figured I'd just give the technical specs of things in this one.

Thursday morning I go to CancerCare for round 2 of the chemo we are attempting to control my immune system with. (and by control I mostly mean 'kick it in the butt so it stops making me sick - but hoping not to kick it so hard that it lets other garbage make me sick - yay tightrope walking).

Basically things went down like this:

March 30th - spent my birthday at CancerCare discussing our options. Options ranged from 'really crappy and scary' to 'even crappier and scarier'. We decided on the blander choice of really crappy and scary - decided to try a 3 month trial of Mycophenelate (MMF - an oral chemotherapy drug - also called CellCept). The upsides - it was oral and could be done at home. The downsides - it was a 'broad immunosuppressant' and would likely wipe out all my immune system. It also was slow - it would be 3 months + before we knew if it was going to work or not.

Most of April ticked by waiting for an appt to see my cardiologist and start the Mycophenalate trial. I was acceptably functional - almost completely NPO (nothing by mouth - no food or drinks) and doing OK on the TPN. The steroids packed a literal 65lbs of fluid on me over the winter, and much of March and April were spent watching that extra weight fall off me - it continues to do so.

May came along and kicked my butt. I can't remember specific dates but I wound up with a broken central line in mid-April sometime - the seal at the tip of the line (the part where the cap 'screws on' to the line) had given way. the nurses cut the line, and repaired it with a new end and basically a bunch of crazy glue. 2 weeks later, I had bloodwork done at the hospital through that line (first time I used that lumen since the repair). 2pm the nurse drew the blood and flushed the line. 7pm I was at home, septic, with a temp of over 105. It was unreal. I spent several days inpatient, on massive antibiotics, the line had to be pulled, placed a PICC line (central line that goes into the upper arm rather than the chest) and just overall got good and freaked at how horribly sick the infection (which was considered 'mild' for the organism they grew - and it was treated very fast... I cannot imagine a 'non-mild' version of this infection... the doc explained that the specific bug I had carried with it a 48-52% mortality rate. Scared me strait.

Fuelled by the terrifying sepsis ordeal and how close I realized I was walking to the edge while depending on TPN daily was a good kick in the butt. I called my oncologist and said I no longer want to trial anything - I want the most agressive, most likely to work treatment they could offer.

Within a week I had a vas cath (IV in the jugular that is the size of an HB pencil - i kid you not) and was starting a 14 day course of plasmapheresis (the treatment where the blood runs through a centrifuge and all my plasma is removed and replaced with donor products... 5 times over 2 weeks). Last Thursday I started my first round of IV chemotherapy drugs. These are the big guns and we are all very hopeful we will find some improvement with them.

So far the chemo is making me profoundly tired (told to expect that) but not horribly 'sick' like I expected, so that is a bonus. I spent the weekend once again shuttling back and forth to the ER for IV antibiotics for what was quickly evolving into a kidney infection - but again we nipped it early and only needed a few days of Rocephin.

My opinion of my local ER has grown immensely - the docs I have seen there lately have been fantastic, and the nurses are beyond awesome.

I have 3 courses of chemo left, and then we wait.

We are all hopeful it will work.

If it doesn't, we have other options... bigger, scarier and more sickening types of chemo, or (last resort) plasmapheresis forever (this poses serious and unique access issues - a small central line in the chest or arm is fine long term - a vas cath is massive, and has always led to signs of infection for me (high sed rate/ESR, left shift, elevated white counts, etc etc) - while I've never gone septic from one they have also never been in long enough to do much long range damage. Having a vas cath of any kind in one's body long term is a serious serious risk.

But - it's an option... and one that beats the alternative at least.

So we have lots of options yet - lots of hope - and several weeks to wait and hope that this current trial works.

I will very quietly say that my appetite is dramatically improved - I am eating small meals all day long and while they do hurt/make me sick, it's manageable - which it hasn't been since September - so this is a huge 'upside' - but we're told to expect it to get worse again as the plasma wears off - then slowly improve once more as the chemo works....

so roller coaster time.

Sadly we are in the process of trying to find a loving home for our 2 wonderful cats. because of the type of chemo im on, and cats knack of carrying/contracting/spreading otherwise harmless germs that could kill or maim an immunosuppressed person very rapidly, we have been forced to make the choice to find them new homes. We're all very sad. the boys are crushed. I'm very upset about it. But - it needs to be done. Life will go on.

Just one last stupid thing we have to 'lose' in order to try and 'live'.

Upside - everyone is fairly 'well' at the moment.

Chemo is going well.

My family is fantastic.

I'm beat and recognize how lucky I am to have a bed, in a warm house, with my loved ones, waiting for me to sleep in. Focusing on that.

I am routinely surprised at how fast time just slips away when I'm not paying attention - It's been waay too long for an update, and there is indeed much to update.

I'm not really sure where to start, so I'll kick things off with kid-news. The boys are both doing very well - they are wrapping up school and are easily slipping into 'summer-mode' as the days warm up. Brandon has made friends with a little girl across the 'dandelion field' who routinely runs through the field that separates her back yard from my parent's. I can't tell you how it feels as mom to watch a little girl run across a field, just to come to the back door and ask if Brandon can come out and play. So many times I have worried and wondered how other kids will treat him, and whether he will be blessed with the same awesome freedom of imaginary play in the fields around my own home growing up... So much was learned and shared and so many memories were made by the completely natural acceptance that kids who live near one another fall into. I have found myself awake at night worrying about whether Brandon would have that joy, freedom and opportunity for growth that most other kids enjoy without a second thought. Last Sunday, disguised as a little blond haired, blue eyed girl who was so happy to find a friend across the field - one that was her age, and liked the same things and played the same games - and her one and only response to the fact that Brandon does not talk - "oh good! I know some sign language from school!"... and off they went. She has come to my mothers back door countless times in the past weeks, each time simply asking if Brandon can come out and play. And he can. And does. And my heart completely melts. And I am, once again, amazed at the complete acceptance, and the total dismissal of any of Brandon's perceived 'limits'. To her, he is just a boy across the field who likes to pick flowers and play make believe.

That just might be the single greatest gift I've been given in the past months. The reassurance not only in Brandon's ability to make and keep friends - but in the ability of the children around us to simply dismiss all the things we parents have worried and fretted over.

Throw in the little boy next door who has befriended both boys (mostly Tyler though as they are the same age) and I have had a lovely time watching all the 'normal' going on in my parent's back yard. Summer is shaping up to be lovely.


So that's the boys - both great - loving living at Ama and Grandpa's house, being spoiled by all the various caregivers that wander in and out of our days... and amazingly, resiliently, taking every bump, turn and hurdle in stride. And finding quiet moments to sneak in some 'mom' time wherever possible - be it stories, a movie together, a computer game together or simply googling how to grow peanuts or how many recipes we can find that include 'crickets' of any form...


On to the less 'fun' stuff. As you have likely gathered, we are living at my parent's place for the time being - I am useless without the nearly constant assistance from various family members, cousins, neighbours, friends, and other awesome kind-hearted people in our lives. Living at my parents means we are closer to the rest of my family (our home is about 15 minutes away from my parents home - and everyone in our 'support network' lives near my parents rather than us), and it means my parents are able to help with the day-to-day minutia that would leave me unable to function by mid-afternoon.

I am profoundly dependant on those around me - it is possibly the most difficult part of all of this. I have been so fiercely independent through even the most challenging stretches of time - but now I am done. I need help with everything. The kids care is heavily covered by family - feeding them, keeping on top of Brandon's meds, tube feeds, baths, school, etc - I can literally do nearly none of it.

I struggle daily with the reality that, even if I truly wanted to (which i do on many levels and absolutely don't on others), I could not move my family back home at this point. We've accepted that at this stage in the game (And we've learned through trials) I am unable to care for myself, never mind my children. I have no strength to do anything beyond park myself on the couch or lazyboy and read/carve wood/write/watch TV/ putter online (and online puttering has dropped drastically - the desire to draw comfort from those in similar predicaments has been overrun with the 'reality' many of those folks face. Realities sadly worse than our own - which is pretty dismal at times.

So yes - most of my day is spent on a couch, when I am not shuttling back and forth to the ER for more IV antibiotics (courtesy of an ill-timed kidney-infection-wanna-be), or to the city for chemo, appointments, procedures or any other exciting soiree at a random hospital.

The lack of strength, and inability to care for myself and my kids has been a hard pill to swallow.

The long term implications scare me.

We have alot of hope that once the chemo kicks in, I may well get back to a functional level - but we are also being logical and trying to lay some groundwork for long-term implications if things do not go as we hope they will.

Basically we will have to overhaul our life.... I cannot be alone for any stretch, with or without kids. I cannot drive (and will not in the forseeable future). I cannot clean or cook. I cannot tidy the kid's rooms/messes. I am, for all intents and purposes, more dependant than my kids in many ways. For anyone who knows me, they know THAT is the toughest pill of all for me.

Unfortunately this makes moving home a challenging goal.

In many ways I am very eager to be at home, around my things, and books, and just 'home' with my family. I miss morning coffee on the deck and kiddy pools on the grass, and hours of 'play' outdoors for the boys. I want to cook for my family, and get the boys off to school in the morning. I want to sit on my couch in the afternoon when the boys are both at school and Dave is working and just revel in the alone/quiet time to read... instead the idea of that scenario fills me with panic.

The sepsis infection a month ago (April?? I can't remember now - we've lived with my parents ever since, first out of convenience, then necessity, now - fear?) scared the crap out of me. The morning I was at my worst I quite literally could not even give myself the advil and I'm fairly sure if Dave was not there things would have gone very very badly. That stole my confidence in being independant.

Thankfully my parent's place is and always has been 'home' for me and the kids (and Dave will reluctantly agree as well). And more thankfully my parents are awesome - as are my aunts, uncles, cousins and friends who have helped to ensure (and continue to) that I am not alone... They have made my newfound dependance on others a bit easier to adjust to, and the opportunity to get closer to so many family members and friends has been an unexpected blessing.

Because of this circle of family, I don't find myself alone, either at 'home' (my parents - which they have completely made 'home' for me and Dave and the boys) or at hospitals - Chemo days are filled with family (and this week board games with my cousin Becca!) - appt's are chances to catch up with aunts or uncles, and scary procedures that require I stay in the city overnight are a chance to stay with my brother and his family and catch up...

I have leaned heavily on my family these past months, and they have not failed to stand strong.

My hope is that with time I can lean less and less - but for now, I find comfort in their company and assistance... and I am continually blessed with this chance to truly get to see how tightly knit we really are. You are all amazing, and you all know who you are I'm sure.

It is 5am and I have yet to get any sleep - between the chemo side effects and Brandon's newfound fever (cold) I have pretty much dozed in and out tonight - but I"m not concerned because tommorrow (today? - in a few hours?) I know I still have lots of family to lean on to help... and a day with my boys on the couch lined up sounds just about right.

I'll try to update more - and hopefully more coherently - sleep deprivation and general chemo-crap feeling isn't making the words come easily this morning.

good night.

K

In spite of pretty sparse updates on my part, alot has indeed been happening.

I'll make this the short version...

In March Dave and I met with the oncologist/hematologist to discuss treatment options. We were given several choices, all with different sets of risks/side effects/effectiveness. As is usually the case, the more likely the option was to work, the worse/scarier the side effects were.

The decisions were basically 'drug A - with lots of scary side effects, and a 30% chance at working' or 'drug B with a 70% chance of working and even more/scarier side effects. All the choices were different types of Chemotherapy to supress my immune system and the irony of chemo is that while it can cure cancer, the side effects almost always have 'cancer' at the top of the list. So yea.

Initially we chose the less awful (and less likely to work) oral medication as it seemed a bit easier to wrap my head around. Unfortunately that option would take 13-15 weeks for me to see any improvements and it would wipe out my immune system completely.

We were comfortable with that choice and we were working at making it happen (perscriptions needed to be written and I had to have a cardiac assessment first as a baseline).

Unfortunately, while working on that, the end of one of my central line lumens broke, and I had to spend a day at the ER getting it repaired. It was pretty easy and really just took a day of inconvenience and life went on.

2 weeks after the fact, I went for my regular bloodowrk (drawn from the lumen dedicated to bloodwork - the one that had broken and hadn't been used since). 6 hours after the bloodwork and subsequent flushing of the repaired lumen, I was at the ER with a fever of 105 and bloodwork/a CBC looking strongly suspicious for a central line infection/sepsis.

The next few days were some of the sickest of my life. This bug was a doozy.

I've always been told that central line + fever = ER. I don't EVER get fevers unless I have a serious infection, so there was no 'I'll just wait it out a day and see if it passes' with me - any fever over 101 and it means I am a sick sick girl.

This was no exception - at 6pm I was feeling great - made the boys pizza for dinner, tidied a bit, had a good day and felt awesome. At 7pm my temperature was 104 and I was flat out. By 8 I was at the ER with my aunt (Dave stayed at home with the boys - thankfully it was his day off).

In hindsight, I've been told that 1) my paranoid freak-out-and-run-to-the-ER reaction and 2) The ER doc's overcautious reaction and immidiate Rocephin infusion (antibiotic) very likely saved my life. The bug that grew in my blood was a gut bug called Ent. Cloacae - one that carries up to a 52% mortality rate once it goes septic - particularly in those with compromised immune systems. Any 'silliness' that we felt around racing off to the ER 20 minutes after I spiked a fever is officially gone as it quite literally made the difference between feeling crappy for a few days and winding up in the ICU (or worse).

The experience fairly quickly got my priorities in order. Scarier side effects or not the treatment that is most likely to get me off TPN (and therefor off a central line) is the one we have to go with.

I saw Oncology on Monday, had my Vas Cath (large bore central line that goes into the jugular and hangs out of my neck) was placed on Wednesday and my first plasma exchange was on Thursday afternoon. I will do a full round (2 weeks) of the plasma exchanges, staying in the city with my brother and his family on treatment days, and trying to come home on the day in between. Once that is done I will start a 4 week course of chemotherapy. If all goes as we hope, the plasma exchange will put me in remission within about 10 days (this is the 4th round of Plasma exchanges and the past ones have always led to remission after 10 days or so), and the chemo will keep me there for up to (hopefully!) 18 months. At that point when symptoms return, we will once again do another round of the chemo.

This is a lifetime - nobody goes into remission forever. the average is 6-8 months, some are up to 18 months. If this works i will be in it for the long run.

It's scary as hell. The side effects are terrifying (seriously - and 'terrifying' from the perspective I'm at right now is pretty damn awful). There is still a chance that it won't work.

We have to try though - and we're working hard to be optomistic.

This weekend I am 'home' - at my parents - my home is too far from the ER for me to be comfortable with the Vas Cath in - it's a massive tube in my jugular that has a habit of occasionally bleeding - bleeding from the jugular is pretty much the definition of 'bad' and not the kind of thing you want happening when you are 15 minutes from a hospital. 'Home' is a few weeks away yet.
I'm enjoying my boys for the weekend then back to the hospital Monday morning.

Onward and Upward.