Chemo #2 (or whatever) tomorrow...

The last couple of weeks have been pretty good to me.  I'm feeling better and better each day, and I've started occupational therapy to help find/relieve the back pain.  It's been good for me - I'm feeling stronger because of it, but I'm also using muscles that I haven't used in a while, so I'm sore a bit, kind of like when you work out and can't sit down on the toilet two days later.  :)

I am definitely feeling better and stronger each day.  It's such a good thing for me, emotionally.  I've been able to do very normal things, like clean the house and cook my family dinner....it's really the little things in life that make all the difference.

Today was rife with anxiety.  They pulled blood for routine tests (CBC, etc.), and they were also checking my CEA.  All of the other results came through except the CEA - and, I wasn't happy about it.  I couldn't eat lunch, I couldn't stop snapping at the kid, and I wasn't a pleasant person to be around.  Someone mentioned that maybe the reason the results weren't showing up on the on-line tool was that they needed to be looked over by the care team before they came to me; that didn't ease my concerns *at all*.  It made them worse.

Until I found out that my CEA is down by almost half.  From 10.1 to 5.4.

I am so. damn. HAPPY!!!!  This is working - after one chemo treatment, my CEA is down by almost half.  That is outstanding!

We did find out that my white blood counts are low again, so I ended up having a Neupogen shot today.  Not a big deal - I don't look forward to having the bone pain, but I have to have it to be able to have chemo tomorrow.  So, I'll deal with it.  And, my nurse today, Steve, told me it was okay to take the Claritin and Advil (every 6-8 hours).  So far - very little pain!  Woot!!!  (An aside - I hope that doesn't mean the damn shot isn't working....there's a worry I didn't need to think about!)

Anyways, the plan is to do chemo tomorrow, assuming all is well.  The question is whether I will continue on the Xeloda, or try the 5-FU pump again.  Dr. K. is concerned that the Xeloda is what's causing the drop in my white cell count, and thinks that moving to the 5-FU might be the way around that.  He's doing some research and thinking on it, and I'm going to try to see what I can find out about it, and we'll make a decision tomorrow.  I don't like the idea of being on the pump again, but if it means I won't have to have the Naupogen shot anymore, I'm game to talk about it.

Hey - I'll do what I can do be here as long as I can.

I'll let you all know how things go tomorrow.  I've got a game plan for tacking the fact that I didn't eat/drink on day three.  I've written out all of the things I can eat or drink during those first days, and instructions on what needs to happen to make sure I'm getting enough in my body.  Poor Levi looked at me with a deer-in-the-headlights look when I started talking about it, so it's neatly written in a list on the counter.

Note to all survivors/caregivers - it's okay to say "There's no way I'll remember this/that.....please, let's write it down!"

And, with that, I'm off to have dinner with my family.  :)  So normal, so welcome, so perfect!

Many thanks....

I wanted to send a quick shout-out to the many people who helped make sure that we were able to give both kids an amazing birthday weekend.  We had people donate money to help with the cost of the party, donate bowling sessions to help extend the celebrations, presents (for both kids) to help them feel loved, and just an amazing amount of support to give our kids a birthday that we will all remember.

I can't begin to thank you all enough - I just don't have the words.

More in a bit....

Recovery Road

Well, after I posted on Friday, I took a pretty hard turn for the worse.  Saturday, I didn't get up.  I mean, I literally didn't get up out of bed.  I think I got up twice to use the restroom.  I was up for about 15 minutes in the morning to get breakfast (which I ended up not eating), and that was it.  I didn't eat.  I didn't drink.  I literally didn't move.

I couldn't.  I hadn't given my body what it needs to recover, and it couldn't.  Finally on Sunday, after getting a little food/drink into me, I asked Levi to take me up to CTCA for IV hydration.  And, it helped.  Not a lot, but anything at that point was an improvement.  Did the same thing on Monday, and yesterday, I was able to take care of myself and the kids.

Thankfully.

Today is even better, as I'm learning that my body needs immediate fueling every few hours, and it requires fluids to function.   I've found a drink that I can tolerate (actually like?) warm-ish, and that helps.  It has plenty of electrolytes and vitamins to boost my body up, and I see a difference almost immediately.

I'm still weak-ish, and when I get going and try to do too much, my body is quick to remind me that I can't.  So, I'm (once again) learning to listen to my body.  My head and my heart, however, aren't as agreeing, as they both think that there is just too damn much to do.  So, it's a constant struggle, but I'm trying to be patient with myself.

So, there you go.  This round was tough, but I made it through, and I still have two more weeks to recover before the next one.  I'm using that to my advantage, and trying to a) get things done, and b) rest.  Not necessarily in that order.  :)

The kids are off of school now, so they are home with me.  That helps, honestly, because they are both old enough to start taking care of themselves.  It makes me sad to think that they are growing up, but they are becoming such amazing people that you can't help but love watching the process.

Tomorrow is Kevin's birthday.  Through the graciousness and generosity of some amazing people (you all know who you are), we are going to be able to give the kids an amazing birthday.  I say kids, because Julia didn't get much from us at all.  She is still pretty bummed about it, so it will be fun to surprise her tomorrow.

I'm off to nuke yet another bottle of water and drink it down.  Hey - it's working, and I'll take it!

Oxalipalantin still sucks...

Well, the pain was worth it.  My WBC was well up to within the normal (like, normal people, no cancer normal) range, and I was able to move forward with chemo yesterday.  Kind of a mixed blessing, if you know what I mean.  I didn't want to get chemo, but I also (more?) didn't want to get another booster shot.  So, it was like, chemo is the lesser of the two evils.  And, it means we are actively fighting this flipping cancer.  That's something, I suppose.

Yesterday was a long day, but I'm feeling okay today.  Mom, Dad and I headed up to infusion, and they started the pre-mneds.  That wasn't too bad.  Once they started the Oxalipantin, thought - yeah.  The nausea kicked in.  After making a call to my docs, they gave me a shot of Ativan (the nectar of the anti-nausea gods), and put me on a patch of Sancuso, which is the only anti-nausea patch that I know of.  So far, so good.

I was tired last night, but hungry, which is a good sign.  I woke up this morning, and was tired, but luckily the kids are fairly self-sufficient and can get ready for school mostly by themselves.  I took a quick nap this morning, and am feeling good right now.  Well, good is relative, I suppose.  I feel good for one day post-chemo.  :)

I noticed the cold sensitivity right away.  I can't eat or drink anything cold - honestly, even room temperature drinks seem to be too cold.  So, my current drink of choice is hot tea or chai latte.  Not exactly the best for you, but it's getting fluids into me, so that's super important.

I'm noticing some small tingles in my hands and feet, but nothing I can't handle right now.  I don't know if they are from cold or from neuropathy.  We'll see how things progress.  When I touch cold things (like, say, a carton of milk from the fridge)....oh yeah.  Sharp, stabbing pains.  When I walk on the cold tile....it almost feels like I am walking on needles, or like my feet have been asleep.

I'm justifying these things by saying that, if I'm feeling those, the chemo must be working.  For now...I'll take it.  I'm glad that the IV chemo is only once every three weeks.  I took my Xeloda last night and again this morning, and will be for the next 13 days.  If this is what I have to do to kill off this cancer, or at least, reign it back in....I will.

I'm sure this post doesn't make much sense - we'll blame it on chemo-brain.  Today is the kids' last day of school (hard to imagine), and I'm hoping to get my shower and still have enough energy to take them to lunch as a treat.  Then, I'm going in for hydration this afternoon, which will undoubtedly help.

Meantime, wishing you all a wonderful Friday, and a good start to the holiday weekend.  Don't forget the true reason for the holiday, and take some time to remember and thank service members for what they've done.

5 years

5 years ago, I went into the colonoscopy room, thinking that the worst thing they would find would be a hemmerhoid.

5 years ago, I had no idea what a PET scan.  I didn't know what CEA meant.  I was not aware of the vast underfunding for cancer research, that the awareness of colon cancer was so fear-filled and sporadic, and that I would soon become a staunch, vocal advocate for awareness, prevention, and early detection.

5 years ago, my children were 6 and almost-2.  5 years ago, yesterday, my daughter graduated from kindergarten.  5 years ago next Friday, my son turned 2.

5 years ago, next week, I had surgery that changed the course of my life.

5 years ago, I had no idea how strong I could be when push came to shove.  I had no idea what battles I would face, what challenges I would overcome, and what kind of amazing people I would soon meet.

5 years ago, I was diagnosed with colon cancer.

I can't wait to see what the next 5 years (and 5 decades) will bring.
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Today starts, we hope, another round of chemotherapy.  We are in for yet another long, arduous battle against this unseen enemy.  It seems mildly ironic that I'm supposed to start chemo today.  Not so long ago, I  looked forward to May 23, 2013.  It would have marked 5 years since diagnosis, and me almost, almost reaching that amazing goal of "cured".

It seems like such a lost dream now.  There is no cure for me.  Stage 4 colon cancer patients, those of us that live past our statistical expiration date, tend to deal with our cancer like other people deal with diabetes or heart disease - it becomes a long-term, maintainable disease.

Here's hoping for many, many, MANY years of maintenance.

No catchy title - just needed to get some thoughts out of my head

Well, yesterday was supposed to be day one of this first round of chemo.  Alas, as my life has been going, it wasn't to be.

My white blood counts were too low, so I instead was gifted with a Neupogen shot, which helps the body produce neutrophils (part of your white blood cells, and important to your body's ability to fight off infection).

Neupogen sucks - it hurts.  A lot.  Despite the reassurance from my doctor that it wouldn't hurt, it did.  I spent most of last night tossing and turning, moaning and groaning and cursing as my body struggled to build those numbers.  We go back in tomorrow to find out whether this worked, and if I'll be able to get chemo starting tomorrow.

The problem is that the chemo, we know for a fact, will lessen my body's ability to fight off infection.  If I go in and start chemo with an already depleted wbc (white blood cell count), I am leaving myself open to severe infection, which would (according to my doctor) land me in the hospital and, in his words, it wouldn't be pretty.

I don't know what I'm hoping for.  If the numbers aren't where they need to be, I'll get another shot of a different drug called Neulasta, which I've had before.  They basically do the same thing, except that Neupogen is a shorter lasting drug.  They both hurt - a lot - as they throw your bone marrow into overdrive production.  It's a pain that I'm not sure I can describe.  It's deep in your bones, and can be felt in your joints, back, pelvic area....pretty much everywhere. The general consensus is that taking a single dose of Aleve and Claritin-D daily while on the shots can help with the pain, but it definitely won't alleviate it completely.  After some begging and pleading out on some of the groups I'm part of on facebook, I learned that heating pads seem to help.  So, I'll try those again tonight and see what happens.  Today's pain has been much less than it was yesterday, but it's still there.

If the numbers are where the need to be, we are looking at starting chemo tomorrow.  This is good, because we'll be actively fighting the cancer.  This is bad because the chemo brings with it a whole other host of issues.  Nausea, diarrhea, lack of appetite, sensitivity to cold....yeah.  I don't know what I'm hoping for tomorrow.

That sounds so selfish - but, I'm so damned tired.  I just can't even begin to tell you how tired I am.  Physically.  Emotionally.  Mentally.  Just....drained.  I want to fight the cancer, because I want to live.  LIVE!!!  But, I don't want to *have* to fight the cancer.  Do you know what I mean?

I've had a pretty crappy week.  It started last week with finding out that the lung tumors are back, and that I'm going back on chemo.  The weekend wasn't too bad, just riddled with anxiety and emotions careening back and forth because of what was coming up.  Tuesday, we found out that the WBC is low, so onto that shot, which made yesterday and today fairly miserable.  And, then tonight, as we were going out for a dinner that we probably couldn't really afford (but needed to eat, because the thought of spending the energy to cook right now is completely, utterly, totally overwhelming, and we've already run through the generous gift cards that were sent to us), I hit a curb with my car.  In hindsight, I shouldn't have been driving, but it is what it is.  I hit the curb with my car, and we had to spend another $65 out of pocket to get the tire replaced.

*sigh*

What's that old saying?  When it rains, it pours.....

Man, I could seriously do with some sunshine.  Like, middle-of-the-summer in Phoenix sunshine.  Without the 120* temps.  :)
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Tomorrow marks 5 years since I started on this journey.  It's also my mom's birthday.  I hate that the two are on the same day.  I'm so angry that she will be spending her birthday with me, at the hospital, hoping (I think) that my counts are high enough to warrant getting chemo.

I hate that I've been dealing with this for five long years.  I've learned so much about so many things since that day 1800+ days ago.  Things I never expected to learn, never hoped to need to know.  I hate that, for the majority of my children's lives, all they have known is sick Mommy.  I hate that my husband and I have had to adjust our marriage to let this mistress called cancer in.

That's kind of what it feels like - she's this horrific, awful, mean-spirited, heartless bitch who keeps trying to put up a wall between us.  She's almost succeeded a few times - tonight was another time when I just want to lay down, cry, and sleep away the emotions.  Sometimes, I almost want to let her win.   There are days when it seems like that would be the easiest way to go.

But, I'll keep fighting.  I'm hoping that somehow, someway, I can pull together money enough to cover what I did tonight ($65 is a LOT of money to us right now....I didn't really have it to spend on the damn car tire).  Kevin's birthday is next week, and I haven't bought that kid a thing.  Julia's still waiting for the shopping spree I promised her.  I don't have the money for that, either.  The money that we do have goes into basic necessities, like gas for the cars, food, and (apparently) dumb-ass mistakes that I make.  I'm hoping to take the kids bowling for Kevin's birthday next week.  Maybe some birthday fairy will drop some money our way.  I can hope, right?

Tomorrow is going to be a long day.  Regardless of what happens, it's going to be a long day.  I'll try to keep  you in the loop, but I can't make any guarantees.

Careening emotions

Warning - there may be a lot of cursing in this post.  If you don't like it, don't read any further.  This is going to likely be a very raw post, and very emotional.  Hence, the bad words.
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The news yesterday, understandably, threw me for a loop.  Here I was, walking into the doctor's office, thinking that the worst thing I was going to have to deal with over the next few months was some radiation burns and maybe some more diarrhea.

Then, the bombshell.

I'm trying to be okay with it, but it's hard.  I have moments where I'm ready for the battle, in the mode to fight again, and ready to show this fucking cancer who's boss.

And then, almost immediately, I have this fear that grips my heart, messes with my head, and starts to put little niggles of doubt into my soul.  I start to get angry.

I haven't been angry much about what I've been going through.  I feel like it's just my battle to face, and I'm lucky to have the most amazing people all over the world supporting me.   But, it's hard not to get angry.

I want to be normal.  I would give my left arm to be normal.  Just to have a few years of calm, of the simple life, or a non-cancer life.  But, that doesn't appear to be my lot in life.

And it pisses me off.  I am so damn angry.  I shouldn't have to keep making phone calls that make my husband worry, that terrify my parents, that worry my brothers.  I shouldn't have to keep telling my children that Mommy has to go through yet another round of treatment because the cancer has come back.

I should have made more phone calls yesterday, to the people who have been by my side and have been essential to my family and me.  I didn't.  I couldn't.  I just couldn't bear the thought of going through my contact list, and trying to remember who I've called.  Telling people the same story over and over is mentally exhausting.  I feel like I chickened out, and that makes me angry.

I hate what I'm about to face.  I despise the IV chemo, and the way it makes me feel.  I hate walking into CTCA of my own accord, knowing full well that I'm walking in there to get poisoned.  I hate walking out of there, holding on to my caregiver (this next week, it will be my mom), because I can't stand up on my own.

But, I will.  I have to.

I don't know what the future holds for me.  I don't know how long I have, or how much time I have left here on this planet.  I don't know how the cancer is going to react to this chemo, and whether this will work.

Here's what I do know:

I have a birthday coming up next month.  I will not do chemo on my birthday; well, I will do my oral Xeloda, but no IV chemo.  I will, however, have a kick-ass celebration of the fact that I've made it another year.  My birthday's on June 21st - who's up for a rowdy celebration?  And, who wants to help me plan it?  I'm thinking it will be on June 22nd - y'all in?

Just because I have cancer and treatment doesn't mean I can't look good.  So, on that note, I went this morning and got my nails and toes done.  I did a wild orange-ish pink color on my toes.  I got some looks of condescension from some of the older ladies there.  I'm sure my tattooed, mohawked, bright colored self threw them for a loop.  Screw 'em - I'm just sorry they spend their energies in that manner.

I have started writing letters to my kids.  I figure that, if I start planning things, I won't need them for a while.  So, on that note, I'm also going to start revising out will and making sure that all of my important documents are in order.  I don't want to, but I have to.

I will remind myself to live each day to the fullest.  It's not about big, huge memories, but about the moments.  When I look back on my childhood, I remember some big events, but it's more the sense of home, of family, of security, of love. I want that for my children.  So, I'm going to make sure that's what I give them.  I won't plan elaborate things; I don't know if I'll be up for them.  But, I will make sure that I listen to what they have to say.  I will listen as they babble, trying to tell a story and searching frantically for the right word.  Each word they say is important, even if it doesn't make any sense.  I will use each day to make small moments with my husband; we've had a rough go of it lately (more on that in another post), and I can honestly say that I'm finally falling back in love with the man I adore.  Small moments with him are amazing, like when he holds my hand in bed at night as we fall asleep.  That is the kind of moment I will remember always, and I hope he does, too.

I still have too many things to do, so I'm going to try to get them done.  And, if I don't?  That's okay.  At least I tried.
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I am going to end here.  I had some things that needed to be said, and usually, putting them here in a posting that rambles and makes no sense helps my brain put it into place.  That's what this one did.  So, thanks for reading, and let's kick this cancer's ass again!