This Dost Suck!

I'm too tired to write a real post - my babies are both sick, and I'm walking 10km for charity tomorrow, so I'm just going to copy and paste what I had on my facebook page.

So my amazing husband Ken is fighting hard right now - he's supposed to be on recovery so that begin his next round of chemo soon. In the last two days, he's had to have two platelet transfusions, and two units of red blood cells to replace what the chemotherapy has destroyed. He has also picked up some sort of an infection in his blood, which is causing him to run a fever. To treat that, they ... want him to come to the day clinic and have IV antibiotics three times a day while on outpatients.

Am I wrong to think that if he's this sick, he should be hospitalized again? All the treatments he's currently having to undergo are causing him to miss his meals at the Cancer Lodge, so he's having to spend more money on food (3 meals a day are included with his stay at the Cancer Lodge, but they are at set times), as well as having to spend lots of money on cab fare (the Mason's transportation program doesn't run on weekends or in the evenings). And at this rate, he's rapidly blowing through the funding he received for lodging.

I say, this dost suck!

I don't understand the system...

For those of you who know me well, you won't be surprised that this post is all over the place.

I feel all over the place.

Ken is doing ok.  Not great, not horrible, just ok.

He's on outpatients right now, and staying in the Cancer Lodge.  We've gotten a few reality checks the last few days, and it kind of stinks.

1. When Ken is in the hospital, all his Cancer-related medications are covered by MSP.  When he's out, he has to pay out-of-pocket for everything.  Which means that 5 days of medication (anti-fungals, anti-virals, anti-emetics, pain killers, etc) cost him $140.  And because he's out, the daily injections that help his immune system recover are also not covered.  And at over $700 each, we just can't afford it.
2. Because we can't afford the injections to boost Ken's immune system back up, it's not recovering as quickly.  That means that he me not be able to start his next round on schedule (Friday).  Which means the 5 days of medication he just picked up, well, that's going to have to be refilled.
3. If Ken's chemo doesn't proceed on schedule, that lengthens the amount of time he's away, which is at additional cost (of course), but more importantly, it means it'll be that much longer before I get to see him again.

I hate, hate, HATE this.  It sucks in probably the biggest way possible.  I miss my husband.  I'm getting worn out playing single mom.  I feel... defeated.

And whiny.

Bleh.  I feel like I need to go do something else.  This is depressing.

A little less stress...

I was able to call around today and found accommodation for Ken. 

I am so relieved.

I did get him into the Jean C. Barber Cancer Lodge for a few days, then into the Easter Seal House for the other days.  So he won't be just kicked out onto the streets (which is something that has stressed the life out of me, since I'm in Quesnel, and he's in Vancouver).  With any luck, treatment will continue to go well, and the next 8 weeks will just fly by,

I sure hope so, because I miss Ken so much.

I honestly feel like part of my heart is missing.  I am lonely, without being alone.

At least the babies are doing well; they are both enjoying preschool.  I'm hoping subsidy comes through soon, because without it, daycare is $1600 per month.  Which, would basically leave me enough money for rent, but that's it. 

However, in light of things, life is good.  I get to talk to my amazing husband every night, and though I miss him desperately, I won't complain.  At least I still have him.

Financial Anxiety

For the most part, we've been doing ok.  With Ken in the hospital, I might even be coming out ahead in some aspects.  But, the next few weeks will be tough.

Ken will be released on outpatients on Sunday.  He was approved for funding for the Cancer Lodge, but...

They are fully booked.

So, he has to find a hotel or B & B to stay in (at about double the cost, plus food).

And... some of his medication won't be covered while he's staying outside of the hospital (like all the things he takes normally, that I brought home with me... now I have to find a way to get them back to him ASAP).

It can always be worse - on the bright side, Ken's treatments are going very well.  His hair is gone, yes, and now so is his beard and nostril hairs, but he's really holding his own.  Which, of course, makes me very, very happy.

So, one way or another, I'll find a way to scrape together roughly $500 for accommodation.  It'll come.  And then, a few months from now, we'll just look back on all this as just another 'bump in the road.'

The boys started preschool today, and it sounds like they had  alot go fun.  As long as everything comes through for subsidy, that should all be ok as well.

A quick recovery...

Ken's recovery cycle has been amazingly quick.  In a span of only 4 days, his white blood cell count has gone from 0, back to 8.4 (normal).  This is amazing.  He was slated to start 'B' cycle on Friday, but it looks like it's being bumped to tomorrow, which means he won't be discharged into outpatients at this time.

Fantastic.

His hair did start to fall out, which I was told was likely to happen.  As stupid as it sounds, I think this is one of the things that has affected me most deeply.  Because of his hair starting to fall out, Ken had the nurses shave his head... and it made me cry.

Pretty dumb, huh.  I am so thankful that he's getting through this so well, it shouldn't matter that he's lost his hair (what little he has, he'd tell you).  But it does matter, to me.

Ken says he's feeling "almost human" again.  So not that he's ready to take on a marathon, but it sounds like he's done with his week-long headache, and the bone and muscle aches that accompanied his recovery cycle.

I'm doing OK.  Not to sound whiny, but this is difficult for me too.  I never expected to be a single mom to "2 under 2"; I love the boys but they are exhausting.  I miss being able to nudge Ken awake in the middle of the night, so he could take care of them and I could sleep (because he could take a nap with them later, while I was at work).  And I love my job, but I don't know how I'm going to do it if I don't have childcare that I can afford.  That's my big project for tomorrow; getting childcare arranged.  But I'm without a babysitter for Saturday (mine is busy with a fundraiser for a friend that also has cancer), and so far haven't been able to find anyone that is available.

I am trying to take care of myself; I got the boys out for two walks today.  And we're eating pretty decent. 

And I almost got to sleep in today (8:30am, with only being up twice during the night).

I know it will get better.  And I know it's not forever.

Ken figures he will be home in 10 weeks.

I am counting down the days...

First Cycle done!

I was wrong, Part B is second cycle, then it's back to A, then B...

Then he's done.  And coming home.

Sometimes, I love being wrong...

Still catching up...

It is unbelievable the amount of paperwork that needs to be done at a time like this.  I mean, I know I should be in bed (I work tomorrow), but I was still filling out forms and packing them up to forward to Ken.  I think I'm done with his stuff (he'll have to finish up with some of the details, then mail/fax them off to different agencies).

Now... I still have to look into childcare subsidies.  And potential daycare (because as much as I love my babysitter, this is an awful lot to expect from her... the boys are very busy!)... but not tonight.  In a few minutes, I'm off to sleep.

I packed up my laptop for Ken (I'm using his desktop, so we'll trade computers for now), and tried to throw in a few things to make his stay away a little easier.  Since he's still in isolation, I'm sending a few of his favorite snacks (he can't go down to the cafeteria at the hospital... or even the patient kitchen).  I almost was a complete 'fail wife' when I forgot to put the power cord for the computer into the box... wouldn't that have been just awesome, a laptop with limited battery life and no way to recharge it! 

We Skyped again tonight (I can't imagine going a day without seeing him) and he got to play with the boys.  After the boys went to bed, we got to talk a bit more.  Right now the apartment even smells like him... one of my Scentsy scents is exactly what Ken smells like, and it makes my heart do flip-flops.

I miss him so much.

On the medical front, the chemotherapy is doing exactly what it's supposed to do: Ken's white blood cell count is down to 0.1.  His red blood cells and platelets are good.  If this keeps up, I'm hoping Ken will fly through his treatment, and be home in no time at all.

How about that...

So, my younger baby (9 months old) has been teething like crazy, and has had a fair bit of GI upset over the last few weeks... maybe a month...

It's gotten worse.  Friday night, he was throwing up, and liquid diarrhea.  The vomiting settled, but the diarrhea continued.  So... off to the doctor today.

The doctor was thrilled to hear about Ken's results so far (this is his regular doctor), and then he agreed with me that there's a good chance that my baby has C.dif as well.  So now I'm trying to collect a sample, and just not having any luck.

Joy.

On a brighter note, Ken Skyped with the boys for about 20 minutes today.  It is so awesome to see them interact with him.  My older son (23 months old) was playing 'peek a boo' with him and babbling like crazy (he's a bit language delayed, but we're having him assessed soon).  The younger was hamming it up and smiling.  I could tell it really made Ken feel good to see his kids - and a positive attitude is exactly what he needs to have.

Not a whole lot else to report at the moment... time to head to bed for a bit, til the 'wee babe' wakens for a snack!

Procrastination

I guess I've been procrastinating blogging 'for real'... I've only been using my phone for 'short summaries of life's happenings'.

Ken is doing well, he received the final portion of 'part A' of his chemo, and will be starting 'part B' next.  Then it'll be a matter of 'lather, rinse, repeat' for 3 more cycles.

Then, he'll be done.

I can't wait.

My Mom went home today.  But before she did, we took the boys to the park.  I was kind of hoping their brother would show up to visit and play, but no such luck.  Apparently there won't be any such luck until Ken is home.

I feel lonely tonight.  The boys are sleeping, and I'm tired too, but there's still so much to do.  My brain is going a million miles a minute.  I have paperwork to find, tidying to do... it never ends.  I can easily fill my time, but it doesn't help with the loneliness.

I want my husband here.

Even when I was in Vancouver, it wasn't the same... I had to be wearing a gown and gloves when with Ken - no skin to skin contact.  No kisses.  I hate it.  The two nights I slept in the hospital room with Ken, it was still fully gowned and gloved.

11 more weeks...

I am Skyping with Ken multiple times each day.  Hearing his voice and seeing his face are wonderful things (he is getting so shaggy right now!)...

But it still isn't the same.

Don't get me wrong, I am so thankful.  I've been told that my wonderful husband will be coming home, that he will be cured.  Not everyone fighting this battle can say that, and my heart breaks every time I hear about someone else who is fighting, and losing.

It's not fair.

IT'S NOT FAIR.

This is one battle I never though we'd be fighting, not this soon...

PS - My dear Ezza, don't play coy in regards to Ken's condition; you've known for over a week.  I received condolences from a member of your family.  Thanks for stopping by.

Home again...

I arrived home yesterday morning, then was back to work today.  As much as I want to stay home with my boys and my Mom, I have to continue to earn an income for my family.

With the news of Ken's prognosis lifting a huge weight from my shoulders, this is now my greatest stress.

Unfortunately, I wasn't well rested for my return to work; there was a horrible house fire 5 houses down last night (the house is destroyed) and Stewart was sick all night. At around 2 am, I curled up on the couch with him, and we got some sleep between episodes of stomach cramping and vomiting. He's still not 100% today, but he's a bit better.

Ken's headache still persists, but it's lessening with each passing day. He's in good spirits, but missing his family.

11 more weeks...

My last night in Vancouver

Ken wasn't feeling all that well again today; he's still dealing with the headache from his interthecal chemo two days ago.  He did have a pretty decent day, though, once the headache and resultant vomiting were dealt with.

The moral of the story? Don't try to be a hero, take the drugs if you need to.

I'm off to the airport in the morning, and headed home to my babies, who I miss horribly.  This is just a ducky situation that I can't win in; either I miss my husband or I miss my kids.

At least it's short term; the outcome could be so much worse.

Oh, and we got to see my baby brother today, so happy memories can always be made during even stressful times.

A little good, a little not so much

First, let me say that I hate blogging from my phone. But right now, it's my best option. So bear with me.

We spoke to Ken's head doctor today (he has a whole medical team), who was able to go over Ken's treatment plan in more detail with us.

Ken will be on outpatient care in about three weeks. That in itself puts me on the edge of a nervous breakdown.

Because there ain't no way and no how I can afford to support two homes (one in Vancouver and one in Quesnel), full time daycare for two babies, and child support for two more, as well as a car payment, insurance...

This is a nightmare.

The good news - treatment will only be 12 weeks, and not four to six months!

And then we're talking CURE.

CURE.

Stoked much? Oh yes.

I just don't know how I'm going to manage until Ken gets home.

If my husband can survive cancer, I can survive this...

Frustrated

I didn't blog yesterday because I was frustrated.

The social worker came. He's supposed to provide support, offer solutions, etc.

Instead, he added to my stress when he informed us that Ken would only be in hospital for a few weeks, then would have to live nearby and come in on an outpatient basis.

I cannot afford two residences.

Up until now, I was already paying to support two children in addition to my babies.  I have to find a way to afford daycare now, and I don't know how that's going to go.

In all honesty, I'm terrified.

How the heck am I supposed to make this work?

We're waiting to hear back from the Dr and see if outpatient service in Prince George will work, at least we have family there. Then I'd only have to worry about childcare.

Rough night...

I was given permission to stay with Ken at the hospital last night - I pushed a recliner beside his bed so that we could fall asleep holding hands (yes, we are sappy that way).

It was not an easy night for Ken; his IV has been set at 300 mL/hr since he started chemo on Friday, to keep his system 'flushed'. As a result, he isn't able to sleep for more than an hour in a shot.

And a bit after midnight, he started getting sick.

My poor, poor man; I called his nurse and got him some drugs. Then, thankfully, we were able to get some more sleep.

When the nurse came in the morning to draw blood, the smell of the alcohol prep made Ken ill again. More drugs, and he was able to eat breakfast.

The hospital food here isn't too bad, but the stuff I can get from the cafeteria is actually really good. Like, awesome mac n cheese yesterday, and lasagna today.  I can't complain, even though Ken can over his 'cheese and fruit' platter (two slices of cheese and two pear halves).

New chemo tomorrow; there are three parts to the first half of this protocol, and the second part goes into Ken's spine tomorrow. Scary stuff for both of us; my husband is so incredibly brave.

Positive results...

... on two fronts.

First, Ken's wbc count has started to drop.  This is a good thing.

The second is that he tested positive for C. dif, which is an intestinal bacterial infection that causes G.I. upset and is quite contagious. Because of this, they want to keep him under contact isolation. Essentially, I have to be wearing gloves and a gown to be in the room with him. Thankfully, this has had no effect on his chemo regime.

And because of the chemo, I can't even give him a proper kiss because he is "cytotoxic", nd his chemo agents are excreted through his body fluids (saliva, etc).

We did get wireless internet set up through, so now he can Skype, which I think will make things almost bearable when I have to leave.

I am getting better at navigating the transit system here. And that's a huge stress reliever for me. So is the fact that we got to Skype with the babies tonight.  I miss them a ton, and so does Ken.

Re-united

Today was quite an adventure.

I flew out of Quesnel at 11:30am.  I was taken to the airport by a very good friend, and had the luck of seeing other friends there too - everyone is pulling for Ken. And I'm so thankful to Hope Air for making this possible.  Wonderful flight, despite the graveness of the current situation, I can't help but smile a little upon take-off.

When I arrived in Vancouver, I caught the sky train to the station closest to the hospital.  Now you have to understand, I have HUGE social phobias, so this kind if thing is difficult for me.

But my husband is so worth it.

I finally made it to the hospital and found Ken.

He looks good. He's feeling better today than he did yesterday.  His white blood cell count is still up, and hopefully the chemo will start to drop it tomorrow. I know it sounds backwards, but they need to destroy his immune system to destroy the tumor.

On the bright side, his pain is less today. And he was so happy to see me (and me him).  I spent the entire afternoon with him.

I miss the babies, but my Mom is taking great care of them. And I'm lucky to be able to stay with my cousin.

I'll be back with Ken in the morning... My wonderful husband is so strong to be fighting this.