Planning for an uncertain future

When your cancer has no cure but treatments make it manageable to a certain degree, it becomes a type of chronic condition that requires you to seek a balance in life. A balance between living with cancer and just living. The tricky part though is planning for that uncertain future.

I wonder why I’m writing all of this in a detached “you” form instead of first person. I suppose that’s better than a creepy 3rd person “Annie wonders how far into the future she can safely make plans”. Does anyone else hate it when people refer to themselves by name? Are we wondering why Annie is rambling instead of continuing on the thread started in the first paragraph? Avoidance maybe?

Let’s throw in some background to cover the last few months I haven’t written anything. The surgery in June was successful though I had many more tumors/lesions than had been on the April scan. Didn’t take long for the little bastards to settle in and invite A LOT of friends.  But they’re gone.

I then went through insurance hell trying to get the new drug. The low low price of $12,000/month may have been the sticking point, along with the head prescription coverage guy vacationing in Europe and denying my coverage from afar based on a wrong diagnosis. Yeah, they’re behind a few years. In the end though I got it and am still on it. As of mid November it seems to be working but I scan again this week to check things out. Given the growth rate earlier and the unknown new drug, we’re not giving it a chance to get ahead of us!

Being on a drug this new adds a whole new level of uncertainty to everything. Will it work for years or months? No one has been on it long enough to know. I’ve been on it since July – if it has a 6 month window, we’ve hit it. Am I able to tolerate a high enough level to make it work? Is it too similar to the last drug to last long given my resistance to that one? Or will this be the one to keep it under control for a decade? If it stops working, will there be another option that will work or will things progress quickly after this drug as it has for many? We can’t even guess.

Fast forward to last week when D1’s high school band was accepted into a wind ensemble festival in NYC in 2015. They will be playing at Carnegie Hall! This is one trip I REALLY want to champerone for various reasons. But it’s 14 months away. A lot can happen in 14 months. Will I be fresh out of surgery? Will I be cruising along on this same drug with side effects having become more tolerable? Or will my ashes have already been spread on my favorite mountain range?

This is what I do at night when other people sleep.

I do want you to know that I’ve already emailed people I’d like to see while we’re there as well as the band director to request chaperone duties before other parents take my spot. I AM planning to be there to watch my first born play in Carnegie Hall! Don’t get me wrong, I won’t thrown in the towel. I’ve made it 8 yrs next month. That’s not a small thing.

This week I also have a high school open house for D2 – my kiddo who was 5 when I was diagnosed. We are getting there and I will continue to do whatever needs to be done to assure I’m here to see more and more of their futures and mine.

If only I could shut up the voice of doom that has comes out to chat in the dark.

 

 

 

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Then vs. Now

I’ve come to the conclusion that I really don’t know how to write about this actively growing cancer. When I created this page, I didn’t plan for it to be a “cancer blog” so much as stories about life. Part family, part life in general and of course part cancer because with quarterly scans, daily medication and suck-ish side effects, it really can’t be ignored.

That’s part of the problem of living with metastatic cancer. You’re never quite sure how to balance life before and life with cancer. Unfortunately, there is never life after because treatment never stops. I guess in this case, life after cancer is also known as the after-life.

But still, you find a way to keep it from the forefront because it doesn’t feel as threatening. It can be pushed back. You know it’s there but the treatment keeps it stable and in some ways, it can be ignored. Until recently, that’s where I was sort of able to keep it as I wrote about family things or baked goods or donut porn. Yes it always crept back in, because all of my life is viewed through a slightly cancerous lens, but I could make it stay there. At least when I was writing more frequently and had more on my mind.

And now?

Now it is actively growing and I find that it’s coloring everything I do or think. I spent the weekend out of town with family and I realized that every time someone mentioned a future plan, I finished the sentence in my head with “if I’m here”. I hate that I do that. I hate that I think about Mother’s day and wonder how many more I have. Very likely I’ll have many but the unknown is driving me crazy. It has since January when my scan came back with new growth.

I can feel my family watching me and I wonder if they’re thinking the same thing. My mom asked me to put my glasses back on because she doesn’t like the way my eyes look. Moms can always spot illness in their children’s eyes. SG studies me when he doesn’t think I’m looking. I don’t know if he’s wondering if I’m ever going to do anything with my crazy hair or how much more time we have.

I wonder if I should write with less honesty because I might go a little soft and tell my family about this blog someday but then I know that if I do, I will bring the cancer filter that exists in real life into this safe haven I’ve created for myself. This place where few of you actually know what I look like or care if I’ve gained a little weight.

By the way, the weight is only my surgery buffer because I know I will shed quite a bit afterwards. Kind of like people who gain weight before Survivor. Yeah, right.

So where does all this leave me and how do I write about it? How do I balance topics when the scales are tipped so heavily towards the big C? Do I go ahead and purge it all here and hope that I don’t scare you all away? Do I bite the bullet and fully embrace the title of “Cancer Blog”? Is that a limiting name?

I kind of don’t think so because there are so many of us out there and truly, the idea is to live with cancer in all it’s forms. It will still occasionally take a back seat to something stupid that I do or say because well, that happens a lot!

I saw a photo the other day on the Humans of New York Facebook page. It was a picture of a woman who had recently lost her husband. The caption was something along the lines of “I wish I had spent less time sad that he was dying and more time happy that he was still alive”.

I’m not dying, I’m simply dealing with the same old crap I’ve been facing the last 7 years. The only problem is I’ve never written during this phase. I’ll do my best to try to find the balance but please bear with me while I work things out.

Sometimes I think of adding another blog dealing strictly with issues of the chronically metastatic. With all of the wonderful drug development we are a growing bunch. That would be the one where I come clean – no anonymity. This disease needs a face. One that says, “Hey, you know that healthy looking mom sitting down at the class party? She has cancer, cut her some slack.”

Something to think about I guess.

Chaos reigns

There are times when things slow down, when you start to take the quiet for granted again after maintaining the status quo for a while. That’s when, as when we found out my cancer is making a comeback, life tends to go off track again. When shit starts to hit the fan from every angle.

When I was first diagnosed 7 years ago, I started making contingency plans for everything. One of the big ones was to confirm with all my beautiful strong women friends that they would be here for SG and my girls should the worst happen. I have built this amazing community of friends who I know will look out for my family if and when I am not here to do it. That knowledge has given me so much peace in my darkest hours.

There’s only one problem. That means we have to still live here when I’m gone.

Two weeks ago SG found out the funding for his position at work is gone. Keeping him around puts the department in the red. After some rearranging of the budget, it looks like we may get one more year here but it’s just not good. He hasn’t slept in 2 weeks. I have gone from denial and anger to full on panic.

We may have to move. IF he can find another job. There are other plans they’re attempting to put in place to save him but I’m not holding out too much hope. It means we move and it means my contingency family support plan is shot to hell.

Now what?

When we moved here the girls were little. That’s the best time to make friends. Your children make friends and you meet the parents – because they’re tiny and you don’t trust just anyone to supervise playdates. Especially when it’s your precious firstborn entering kindergarten.  Every friend I have here, with the exception of some work colleagues and their wives, I met through my girls.

But now they’re older and you don’t bond with teenager parents the way you do when they’re little. I’m struggling with what to do when I meet new people, wherever we may end up. IF we move. I’ve got to hold out a tiny bit of hope right?

Do I join the PTA and open with:  “Hi, I’m Annie, I have cancer. Are any of you willing to maybe look out for my family when I die?”

Is that a little too forward?

Should I tone it down a little?

In the meantime, I’m thinking of crashing the meeting the dept. chair is going to have with the dean regarding SG’s job. Do you think, “if you fire him I die” is the wrong approach. Too much?

Afterall, my meds are $8,000/month. How the heck do we cover that if we lose insurance?

Obviously my plans are all works in progress. I’ll let you know what sort of brilliance I come up with.

Creepy but cool

Has it been long enough since I’ve done a cancer related post that I can cross over to the morbid side again?

If you were around in January, you might remember when I told you about D2’s friend losing her mom in a car accident. Well yesterday she came home and told me about a new necklace this little girl got over spring break. She said it’s a really pretty glass with colored designs, and oh yeah, it has her mom’s ashes in it. Her little brother got a chili pepper shaped one.

I wasn’t quite sure what to say other than, Wow.

I later asked D1 what her thoughts were on the pendant and she said, “I think it’s cool but also a little creepy”.

My thoughts exactly.

I asked her if she’d ever want one. After some thought she admitted she might and apparently she’d like it in the shape of a music note. I’ll have to remember that.

I can’t seem to stop thinking about it today so I googled it and found this website for cremation jewelry.  I had no idea that sort of thing existed.

Of course, with that dark cancer cloud hanging over me some days, I’m fascinated by it too and even scanned the catalog. I scanned a couple of other sites and saw everything from pendants, bracelets and charms to worry stones and key chains.

Apparently there’s a whole market out there that makes it possible for you to wear your loved ones. Or “keep them close to you” for the non-creepy description.

One company combines the ashes into the glass. Another says their jewelry comes complete with instructions and a funnel. Hopefully you won’t use the kitchen funnel by mistake. That would give new meaning to  “mom’s special recipe”!

Ideally, I’ll live to be 100. But if I don’t, if I go while my girls are still relatively young, do I spend some time with them picking out something like this for them?

Is that beyond creepy? Or is it kind of cool?

Thoughts?

When my Paranoia is Validated

Alright so we all know I have a love/hate relationship with the super efficient oncology nurse. Or you might not if you’re new.

I think I also mentioned my next scan is March 18. Well now it’s not. It’s the 8th – as in next week. Why, you ask?

Because my Nexavar prescription is due for a refill. Which is good news because it means I’ve already gotten a year out of it, which is much more than early statistics led me to believe I’d get. The one that sticks in my mind is “time to tumor progression is approx. 5.9 months”. Twelve is obviously much better.

Given that yesterday I was over it all, it’s reassuring – a good reminder of the benefits I’ve gotten because it’s wearing me down. If I’d have written a post yesterday, it would have sounded a lot like this:

Hi, it’s me, Annie, and I’ve over it. Just fucking over it. Over being sick all the time. Over the sore feet. Over telling my family to go have fun without me because I can’t be more than 20 ft from a bathroom. Over being afraid to eat because it will make me sick. I’m hungry and weak and crabby.  My body is tired. I’m done. I can’t do it anymore!

Hell, maybe I’m still there a little bit today. But through it all I remind myself that the reason I feel like dog shit is because the drug is probably still working. If it’s still causing such extreme side effects, it must also mean it’s keeping the tumors in check, right?

But then a conversation takes place between two very conflicting parts of my brain:

Side 1: Wouldn’t it be nice if it stopped working and we could try the next drug and feel better? I hear the side effects are much much better!

Side 2: But we have no guarantee we’ll respond to the next one. What happens then? Nope, we want it to keep working no matter what!

Side 1: Oh it’ll be fine. Tasigna will be the magic drug that lets us skip through our day singing and throwing rose petals just like those annoying princesses in the movies. We’ll feel great and small birds will land on our shoulders as we stroll through the park. Come on, it’ll be fun!

Side 2: But it’s the last one before clinical trials. Are you sure we want to go there already?

Side 1: Hell yeah, no problem. Who cares if only 15% of people who developed resistance to Gleevec see improvement from Tasigna. You’ll be in that 15%. No problem. Come on, this could be the one!

Side 2: But what if Nexavar really has stopped working and this imaginary bullshit about throwing rose petals doesn’t happen either?

Side 1 : Well I’m really only letting you imagine that because we know the Nexavar IS still working. That’s why it’s ok to joke.

Side 2: But what if it’s not?

Side 1: It is. It has to be. You’ll have gone a whole year without surgery on March 17. That’s the longest since the Gleevec stopped working. Remember how horrible the last one was? You were so weak from having the August surgery that you didn’t bounce back very well. It’s still working! I know this body wouldn’t betray us again so soon.

Side 2: But what if it’s not?

Side 1: It is. It has to be.

And then the pharmacy called the dr.’s office to get the refill. And she called me. This is what she said:

Hi Annie, Diplomat called to get your Nexavar refill and I thought I’d check with you and see how you’re doing. How many pills do you have left?

Ok, so 18 days left. That’s not going to get you through to your results appointment on the 22nd is it. Do we want to go ahead and refill before then or would you like to wait until we get the results? Obviously you couldn’t handle increasing the dose so if there’s anything new that won’t be an option.

What do you think? You would like to move it up? Sure no problem, we can change it to next week and that will give them plenty of time to either refill or work a new prescription through the insurance hassles before you run out of your existing refill.

The doctor will be back in tomorrow so I’ll get his take on it but I think you’re right, let’s go ahead and reschedule you to be on the safe side.

So there you have it folks. It’s rare Nexavar works this long and we all know it. Obviously, I had thought this exact same thing but was afraid to say it out loud. I appreciate her candor.

Or maybe I just appreciate getting the scan out of the way sooner. Either way, my psycho self has been validated.

The Nexavar may not be working anymore. Or it might be. We don’t know, so why beat around the bush?

They are in the business of keeping me alive and no matter how much I try to deny statistics that quote things like “overall survival” and “progression-free survival”, they are part of my life. The reality is, at any time I can be back in surgery, changing meds or researching clinical trials.

I said on my anniversary that I am going to say OK to whatever is next and if that means being brutally honest, and therefore proactive about possible treatment changes then there it is. That’s the reality of being me.

That’s the reality of the work the oncologists and their nurses face every day. Why stick our heads in the sand? They are the people I don’t have to censor myself with. It’s what they do.

I almost wonder if my horrible awful very bad day yesterday was a way to prepare me to accept the change more easily if it happens. Nexavar has diminished me in every way. It has caused muscle loss. It wears me down mentally as well as physically. It keeps me near a bathroom at all times. It has kept me from sleeping through the night for almost an entire year. There are times it has made me wish I was dead, all the while keeping me alive.

IT is my true love/hate relationship.

Obviously as much as I hate Nexavar, I want it to keep working. It’s better than facing the unknown again. Not to mention the over the top scanxiety of the first scan right after a drug change. The will it work or won’t it stress is insane!

But you know, that skipping on feet that don’t hurt, through in the woods far away from a bathroom, doesn’t sound too bad either. Especially, if SG is waiting at a remote cabin without the kids.

** Update ** The doctor came back and right away signed off on the prescription refill. I’m not sure he was happy with super nurse calling and giving me doubts. He’s a good man!

Doughnuts or Donuts – They’re Popular Either Way

I don’t know what the deal is with donuts in my search terms lately. One post on doughnut porn and suddenly I’m the go-to girl for all things round and yeasty and put to questionable uses.

There aren’t a lot of fun searches that lead here, although I did get “crochet man thong” not long ago. That has potential.

In the last week though, I’ve gotten these:

  • cardboard donut box  – Is this a high demand item?
  • video top ping donut –  I don’t even know what a top ping donut is, why would I have a video?
  • cock and ball doughnut – ok, I might have actually used that exact term but only in a purely descriptive way. This is like the 4th time I’ve gotten this search. Who knew?

And my personal favorite:

  • “Special” doughnut porn – What exactly do you think that means? Do we want to speculate? What kind of special things do you think they do and should we assume it involves the cock and ball doughnut? Are doughnut holes also a part of what makes it special?

Oh wait, I did get this one yesterday – I’m assuming it’s NOT doughnut porn related but I’ll let you be the judge:

  • Tail in ass pain – It linked to a post about my dog. They may have been disappointed.

I’m glad I didn’t write about clown porn or something!

 

Why Yes, I am Wearing Pajamas at Noon

Wow, so, it’s one of those days. Not an “OMG, I have cancer day” like I’ve posted about before, but more of a “thank God I had the foresight to buy pretty jammies” sort of day.

I won’t try to kid myself, or anybody else. The hard truth is, I’m not getting dressed today. I lack the energy to lie about it. Heck, if I don’t have the energy to walk down the hall and put on clothes, why would I waste what little I have fooling myself?

So instead, I fondly remember the day I bought the cute long grey and black top that just happens to look quite nice over my jammies. In fact, one might be fooled into thinking I have real life adult clothing on should they happen to show up at my door. If I had any plans to answer it.

And….it has the added effect of hiding the fact that I am in fact, undergarment free. On top. I do have undies on. TMI be damned!

I also got a new pack of headbands in the mail last week. The nice aqua one brings out my un-made up eyes quite nicely thank you very much. The same eyes that should be closed for a good part of the day but probably won’t.

It was a long night. One of those where the freaking digital clock taunted me with its bright flashy hours. Every last one of them.

SG left this me this morning with some very good advice. He said, “Get some rest babe, take a nap. It was a long night for you!”

I love that man! He failed to mention that it was also a long night for him. He had the hourly pleasure of my cold feet seeking his for warmth as I crawled back into bed only to get up again shortly after.

Luckily he has an out-of-the-way office and the ability to power nap the minute his butt hits his chair. I envy that!

Oh the elusive nap I’ve never been able to take. I’ve tried, oh how I’ve tried. The only time I can sleep during the day is if I’m post-surgery and drugged up.

So instead, I’ll wrap myself in my oh so comfy jammies with a blanket and Modern Family on Hulu. This is the silver lining to that god awful Nexavar – other than the whole keeping me alive thing. I get to ask myself for permission to do absolutely nothing today.

Guess what? Permission granted!