Lack of grace?

I’m breaking all sorts of records today by posting twice in one day after such a long absence. Actually, have I ever posted two?

I’m spent the last hour reading articles that I won’t provide a link for because I don’t want to give them anymore attention than they already have and I’m too lazy. Granted it involves a NY Times writer and his wife so they probably don’t need me to send my 3 people over anyway.

Long story short, he and his wife both wrote articles criticizing Lisa Boncheck Adams for tweeting and blogging about her metastatic breast cancer. Google it. It’s everywhere. It showed up in 3 different articles on my Zite app this afternoon and caught my eye for obvious reasons.

There is a quote at the end of the NY Times article that suggested that people who choose to really “fight” cancer (God I hate war comparisons!) aren’t maybe handling it with as much grace and courage as those who accept the inevitable and just die already. I’m paraphrasing.

The author also compares Lisa, a young mom of 3, to his father-in-law who died quickly. Yes, the whole mom of 3 thing is probably what sent me over the edge.

Who the hell are they to tell us how to properly die. To me, going to “heroic measures” to be here for our children is what courage and grace are all about. I’m not on feeding tubes, they aren’t changing my diapers, I am not dependent upon them to care for me!

Instead, I am going to their band concerts, baking them birthday cakes and doing what I can to teach them all I can while I’m still here. Get that? While I’m still here! I will likely get to see my oldest graduate from high school.

I am on drug #6 and recently had surgery #4! These are the measures I go to for my children. Is it fun? No! As a matter of fact, most days suck. But I AM HERE! I am putting on the best face possible for them and I am doing this thing!

Does it require a boat load of courage to face each scan and pop the pills that I know will make me feel horrible? Why yes, I think it does! Would dying 8 years ago have been easier? Absolutely. For me. But not for them. The cancer patient gets the easy part. The ones left behind? Not so much.

It’s called parenting! Parenting despite what we’re going through on any given day. Parenting in a way that we hope will make them stronger, more courageous people who can handle life’s challenges with grace.

Which is exactly what I’m seeing in my girls and it reassures me that I’m facing this in the right way.

Do you get to judge me for my choices? Sure you do but only because I’ve put myself out there publicly. Will you be right? It’s doubtful.

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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.

 

 

 

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.

Stupid Surgery

Alright, so here’s the thing. I feel like it’s time for a little honesty.

I’ve been trying to act all tough about this cancer and my upcoming surgery. I’ve tried to tell myself and anyone else who will listen that I’ve done it before, I’m a pro, it’s no big deal. But uh, it kind of is a huge deal and it’s freaking me out more than a little to know that I’m once again going in to be gutted.

Sure, I could say they’ll delicately open me up and debulk the tumors but really, when I wake up in recovery, it feels like “gutted” is the more accurate term.

I am ALWAYS a crabby pain in the ass in the recovery room. I wake up and I want more drugs, water, and my husband. Not necessarily in that order. I hate everyone around me and I hate the pain. It’s possible I might be a little bit of a baby.

When I met with the surgeon on Friday I acted all tough and nonchalant. He called me a veteran, asked me about prior surgeries, length of hospital stays etc. while his nurse openly gawked as I rattle off the lists of when, what and where. She really needs to work on her poker face. I tried to laugh it off and pretend I wasn’t terrified. Even my low blood pressure backed up my sense of calm.

I’m good at this. The sort of fake your way through conversations thing and act like nothing is wrong while inside it’s like I have this loose thread that is slowly being pulled until I unravel in a heap on the floor. But I never get there. At least not while anyone is looking.

Have I mentioned how much I REALLY REALLY hate surgery? I’d postpone it but the little bastards would probably kill me so I suppose it’s time to suck it up. I’m signing up to chaperone a field trip the day before. I think I’ll need the distraction.

Oh hell, at least those long cute loose dresses are in all the stores for summer. It’s amazing what you can hide under one of those. I have a feeling I’ll be hiding a lot!

Living Incrementally

I was given Valium for my PET scan last week and it was a wonderful thing! I was able to go to my results appointment that afternoon without the usual nervousness and anxiety. Unfortunately, it wore off and although the results have still left me a little numb, I am faced again with one hell of a challenge to overcome.

The attempt at giving the drug 4 more weeks to “kick in” was a colossal failure. Or maybe it wasn’t, I don’t know. Colossal is kind of a strong word. However, all the tumors grew a little and another new one decided to take root adjacent to my bladder. Perhaps the drug has slowed down the growth but still I’m not stable and they certainly haven’t shrunk.

So we face another new chapter. One which involves a consult with a surgeon on Friday. That scar from my sternum to my pubic bone is going to be reopened and I’m going to be stapled back together again. I’m still wishing someone would come up with a surgical zipper so that each time I go in it makes it just a little easier. The surgeries get more complicated each time because of the adhesions from the previous ones. In this case the THREE previous.

Everyone keeps asking how I’m doing and I’m not sure I really have an answer. Though there are moments when I feel I’m unraveling, I am really just numb. Most of the time. At others, I look out the window and see D2 working in the yard next to her dad and she seems so competent and it throws me a little. Inside though, I am so thankful that there are ways she no longer needs me.

I watch D1 go about her days and am in awe how grown up she is. She went to prom last month and that felt huge. Being here for that milestone was something I can’t quite describe so I won’t even try.

D3 is on a quest for as many cool hairstyles as she can find and suddenly they all require my help. She will be in the middle of homework and look up and ask me a question not homework related but about surgery or the next drug. I know that cancer is on her mind.

The problem is, we’re not sure what that next drug will be. I have an idea but it’s so similar to the one I was on previously that I don’t know how much faith I have in it. So I simply look ahead as far as the surgery, as this month I only looked towards the scan on the 25th.

Since January I have lived in bits and pieces. To the arrival of the new drug, to the follow-up scan, and then the PET scan and now surgery. I will spend May living one band concert, solo day and field trip at a time. I’m not sure I remember how to look very far ahead. I am suddenly a little afraid to hope.

My neighbor made a comment about me being pessimistic about my PET scan. She said it as if I was at fault for the results but I won’t accept the blame! I was realistic because I’ve learned what cancer feels like. I know the difference between a hot flash and night sweats from tumor growth. We all do.

Since January, SG has been finding places he needs me to take him right before lunch time. He takes the bus to work but seems to need me to run him around town more than usual. Each time the task is completed, he asks me if I’m in the mood to grab a little lunch. I’ve gained 12 pounds since that first scan when we found out Nexavar had stopped working. He’s ok with that – he says I need to gain a little weight before surgery. At this rate they won’t be able to find the tumors in all the extra lunches, but we are finding the time together where we can and that’s really all that matters.

I’m not at all sure what’s ahead. Last time a drug failed, two more drugs and two surgeries quickly followed. I’m not sure I’m as strong as I was 4 years ago but as I’ve said before, I’ll say ok to anything that keeps me here for my family. Though they seem to be needing me less, I know they’re not ready for me to leave.

So I won’t.

When a speed bump becomes a sink hole

Ok, first a bit of housekeeping – Somehow I seem to have accumulated several new followers, most of whom have blogs related to breast cancer, and it dawned on me that when I changed my blog theme my tabs disappeared and nowhere did it clarify that I have GIST (gastrointestinal stromal tumor).

Even though those of you who have been here awhile know that I’m a rare cancer freak, I changed my design last night so that my tabs are back in case anyone else new comes over to visit. If you are new, a post that kind of tells my story is The Day My World Changed.

Oh and thanks to all the new people who seem to think I might have something to say! I already adore you! As Nancy of Nancy’s Point so eloquently stated this morning, “mets stink no matter what kind of cancer”.  I hope that, though my situation is different, I have something to say that’s relatable regardless of what kind of cancer you have – or even if you don’t have any at all. We’re all in this thing together if in different ways.

And now the rest of the story………………..

The end of January, I wrote about my little speed bump, also known as new tumor growth. After 3 successful years on Nexavar, I’d developed resistance as I am known to do right about the 3 yr point. By the way, my 7th cancerversary passed in February and I didn’t even write about it. Big change from the 5 year mark huh?

Anyway, our  plan after Nexavar was to try a new drug, Tasigna, and scan again at 8 weeks. So we did. And that 1 new tumor? It grew. How did the rest of my abdomen & pelvis look? Not so pretty. It seems that 3 more of the little bastards have decided to join the party. Two more in my pelvis and another, just for fun, on the left lobe of my liver.

Because I’m completely in denial, we decided to stay on it for another 4 weeks and then do a PET/CT instead of just another CT. I want to see what kind of seeds have taken root and are just waiting to do me in. Also, we scanned a little early. There was a 2 week delay getting the new drugs then a week of gradual dose increase. My hope is that we just didn’t give it enough time. It is possible since the several existing small lesions on the right lobe of my liver actually decreased in size. Granted they were hardly measurable to begin with but I’ll take what I can. This drug is far too easy to take (re. side effects) and I don’t want to give up on it yet.

So that’s where I am, just the facts, none of the emotional baggage. I’ll save that post for another day this week. Suffice it to say, it’s been a tough couple of weeks.

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.