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.

Cancer makes me a little crazy…or maybe a lot.

When I found out the cancer was actively growing again I was completely calm. I don’t think I was surprised so I don’t recall even a skipped heart beat at the news.  I took it in stride. Made the phone calls, texts and emails I needed to make and went on with life. I got all philosophical about marathons. I was full of shit.

Then one night the girls were in bed, my beloved Science Guy was in the shower, and a Motrin commercial came on. I don’t remember much other than a little girl with the flu and her mother by her bed. They zoomed in on the little girl putting her tiny fat hand on her mom and I lost it. I don’t know what else happened or what they said on tv. I simply lost it.

I started to panic. I panicked that this new drug won’t work. That I’ll never see the tiny hands of my grandchildren. That I’ve begun the wrap up phase of this not nearly long enough life.

I got myself under control until a couple of days later when I was over tired. We were supposed to go to a hot springs with the girls but as usual we put it off. I’m not even sure why other than SG started looking up different places to go and it pissed me off. One thing led to another and the next thing I knew we were staying home. Staring at each other. Bored. Doing nothing. Again.

SG suggested we take a walk and the minute we hit the driveway I lost it. I didn’t speak to him for blocks and then when I did, I’m pretty sure he wished for the silence back.

I accused him of working too hard. Of never wanting to do anything. Of wasting the additional 7 years I’ve been given.

I brought up the 19-year-old complaint that we’ve never had a honeymoon. I told him I was going to die before we did. I told him I was going to die and the girls would have no memories of me other than staring at each other in our fucking tiny house.

Oh, I was on a roll. I was tossing the F word around left and right and generally making a complete ass of myself while he walked silently beside me occasionally apologizing.

And then I crossed a line.

I accused him of putting me at the bottom of his priority list.

He stopped. I stopped and looked back and the look on his face shut me up. He told me that wasn’t fair. That everything was on hold last summer while I trained, and went to, the marathon. Oh yeah, he went there. And he even raised his voice while doing it.

Then he reminded me how he’s trying to run two different facilities on campus and has no help and time for himself. Never takes time for himself. He’s right. HE is at the bottom of his priority list. Working is ass off and ”where the hell are we supposed to get the money for some tropical vacation?”. At least he held back on the fact that all our extra income goes to keep me alive.  Yeah, I pretty much suck.

I think that was practically the first time in our marriage he’s talked back and stood up for himself. I’m kind of a bitch.

I apologized and tried to explain the panic of knowing that my time with the girls is finite and likely to end so much sooner than I’d hoped.

I assured him I wasn’t asking for a week in Aruba. I only wanted an afternoon. He understands as well as he can that I’m scared of running out of time. That we need to grab onto this time and make as many good memories as we can. That I’m afraid we’ve wasted so many opportunities because one or both of us is exhausted.

Life passes by all too quickly and it’s easy to push things to another day. But what if your number of days is unknown? What if every little pain reminds you of what could go terribly wrong?

And what if you take it out on the one person who loves you the most and has done everything he possible can to make your time easier? I wonder some days why he stays. He loves me but for the  life of me, I can’t figure out why.

We walked and we talked and I tried to stop freaking out. He tried to talk me down and in the end we had miles behind us trying to get my eyes to be half way normal by the time we got home to the girls.

I hope that in the end we both learned a little. I know I was reminded how easy it is to hurt people we love when we’re being so completely unfair and saying things we don’t mean in a dark moment.

And I hope he better understands that sense of panic that hangs over me as I watch life fly by and worry that I’m using up my good days.

I think I’ve also come to realize that the honeymoon I bitch about not having has maybe been happening all along.

Speed bump ahead….

One marathon and suddenly I think I’m an expert on marathon analogies but I’m  going to use one anyway.

I’ve always disliked the use of war as a way to describe my journey with cancer. It implies that when you die, you lose. You lose your battle or your long fight. You fought bravely but in the end, you failed. You lost. You didn’t do all you need to do and the enemy won.

I’ve decided it’s a marathon where you occasionally hit some walls but in the end you finish. You succeed in overcoming the times that make you want to quit. The hills that threaten to do you in but only slow you down.

For some it’s a half marathon. A shorter journey that is no less difficult to finish. For others it’s the full. A long journey filled with walls to break through and the occasional train.

Along the way, family and friends cheer you on or provide you with energy snacks to give you that boost to keep going. They hug you at the end and tell you “well done” and “you made it”.

My journey has been a long one. It has felt like I’ve been beat up and knocked down. I think I tripped over my feet a few times and have gootten some impressive road rash but I’ve kept going.

This week I hit a speed bump.  Or maybe I’ve stopped at an aid station.

Nexavar has stopped working and I have a new lesion in the “lower left aspect” of my pelvis. The 3 lesions on my liver are now referred to as “several”. Whatever the hell that means.

I’m now awaiting approval for drug #5. It’s called Tasigna and it’s over $8,000/month so insurance will probably be a little slow to approve it. I kind of don’t blame them but in the end, my doctor will convince them there are few other options and none are cheaper. The good news? It’s supposed to be much milder in the side effect department. That’s my silver lining.

That’s also the logic I used to convince my daughters that this was ok. I’m not sure how well I did but I tried. I kept it together and chatted with them about the latest wall we’ve hit. I told them of other people who have had great success on Tasigna. I told them I might start feeling better and will likely have more energy.  I may have even convinced myself.

They’ve been sticking pretty close the last couple of days. Though D1 did spend the evening yesterday with her boyfriend and his sister. I’m ok with that. More than ok because I know that whatever she can’t say to me, she will say to them. She shared a text from them with me Wednesday evening that said they were “sick of her one word answers on her texts and were taking her for frozen yogurt and video games after school”. One word answers means she was struggling. That they stepped in and took over to cheer her up makes me happy.

Today I will stop by the elementary school and talk to D3′s teacher while they’re at lunch and I’ll email D2′s teachers and tell them my status. I’ll ask them not to say anything to the girls but to simply keep an extra eye on them. I’ll email D1′s band director because that is where she finds her peace and he’s the one person who will be with her throughout all of high school.

I’ll email a couple coworkers of SG and ask them to take him to lunch or out for a beer.

I’ll text my parents to say hi and let them know I’m ok.

I’ll call my sister to check on her so that she won’t feel like she’s hovering and checking on me.

I’ll go for a walk to give myself strength to keep going. I’ll get my head clear and my body strong in case my next aid station stop involves a surgeon.

I am hoping this marathon turns into a 100 mile ultra or whatever they’re called.

I’m going to take my time and enjoy the trips over the scenic bridges, along rivers and in the mountain foothills.

This is a race I’m not in a hurry to finish. I don’t want to set a personal record. I want to enjoy the sights and the supporters. I want them to walk with me so that we can give each other strength.

I want them to hug me at the finish line – years from now – and say “good job mom, you did well and we’re proud of you”.

26.2

Have i told you about the time I was going to walk a marathon as a way to tell cancer to fuck off but then it told me to fuck off instead? And then I had surgery 2 months before marathon day so I did a 10k instead?

I think I did.

Did I also tell you I looked like hell warmed over and when a friend saw my commemorative 10k photo he said, “I love races where they hand out meth at the checkpoints”?

I may have.

Did I tell you I registered for another one this year? That I have to walk 26.2 miles in October? Because I don’t run. I never have. My boobs are too big and I don’t like it. So I walk.

Well I did.

And I’m nervous.

The first time I signed up, there were several of us doing it so it felt like a group event. I was excited and scared and happy all at once. I was going to get to spend the weekend with dear old friends AND prove myself and the world that I was healthy enough to doing something of that magnitude.

And then I had a CT and found out that my drug failed me and that I wouldn’t be proving anything to anybody.

It was a lot harder than I let anyone know. One of my friends was just getting her life coach business going so she arranged weekly group phone calls to track our progress and give each other encouragement. Except I wasn’t walking. I’d had close to a dozen tumors removed as well as a hysterectomy. All I could do was listen and try not to cry so that my friends wouldn’t know that I hated those calls.

I hated the reminder that I was so much less than. Less than I was when they knew me so well. Less than I’d hoped I could be.

These were people I loved, whom I’d known way before I was his wife or their mom. I didn’t want them to suspect that each time I looked at my watch and knew it was time for the call, I’d get sick to my stomach.

But I think they did. They kept telling me I was doing my own kind of marathon with the surgery and drug change but it wasn’t the same.

Three years later I’ve registered again, to much less fanfare.

But to me it’s still huge. And daunting.

My life saver and the highlight of the event is that D1 is going to walk it with me. It’s not something I’d have imagined her doing but in addition to the draw of Voodoo Donuts, I think she wants to see that other side of me. She says I always seem like I have so much fun there and I do. It dawned on me as she said that, that perhaps she hasn’t often seen the relaxed side of me. She sees the uptight exhausted mom. This time we’re working on borderline healthy mom.

We will get to be in a crowd of thousands who don’t know, or care, that I have cancer. We will be doing something only healthy people do. I will be one of those presumed healthy people and it feels damn good!!

This weekend we did our 15 mile training walk. Next week will be 17. We’re tired and starting to question how long 26.2 actually is and it feels unreachable but I think we’ll be ok.

For D1 it will be the draw of chocolate milk at the finish line, the Voodoo donuts and the chance to just get away from school and volleyball and marching band practice. A weekend she really needs to relax!

For me it’s a 2nd chance to prove I’m strong enough. My next scan will be 3 weeks before the marathon and no matter what it shows, I’m going! I will prove that this isn’t too much for me. I will deal with the rest, if there is anything, when we get back.

Whatever our motivation differences, I’m glad we’ll be doing it together.

And G, if you’re reading this, how about coming just to hang out? We’ll share our chocolate milk!

Jenny

The other day I posted a quick note about the loss of a friend and I didn’t do her justice – I probably still won’t be able to.

At the time I was in the middle of a million different kid things but I didn’t want Jenny to go unmentioned. She’d been commenting here for quite some time and I didn’t know how many of you (if any of you are still here) knew her.

I think I first met Jenny when I commented on her post on Mothers with Cancer. You know how it goes, I left a comment, she came over here and left a comment and our friendship was born. Although if I remember correctly, she said something about feeling like we’d be great “fiends”. It carried over onto Facebook where we finally got to put faces to names, share pictures of family and play a million Words With Friends games.

She had Inflammatory Breast Cancer which has only a 50% survival rate at 5 years. Jenny fought the good fight but a few weeks before she passed away, she made the decision to stop treatment. In the end she chose quality of life over quantity and I admired her courage more than I can describe. She died sooner than she’d expected but she did it on HER terms with her family surrounding her and sending on her way with love and their blessings.

Her oldest daughter has done a spectacular job with a couple of last posts. Things that Jenny wanted to share with her readers but simply ran out of time to write. She also posted about Jenny’s last days. It is heart wrenching but stunningly beautiful. A tribute to her grace and strength!

I’ll let you go over there and read about her – in her words and her daughter’s.

She was more than another blogger, she was a dear friend and support system for so many others across the world. She was in New Zealand but she made everyone feel like she was someone you met with regularly for coffee.

I’ll miss our chats but will always carry her with me – her example won’t be forgotten. When I’m facing what she did, I’ll look to her for the courage to go on my terms while giving nothing less than my all to the people I’ll leave behind.

Good-bye my friend – you did it well!

Baby steps

In the war against cancer there are baby steps – small victories that make you say DAMN RIGHT! I had one of those moments on Saturday.

As you know, because I’ve bitched about it at length, I lost most of my hair when I started Nexavar. Before that, the Sutent turned any new growth almost white.

All my life I’ve had a ridiculous amount of long red hair and then suddenly I didn’t and I realized how much I identified myself by that one attribute.

Honestly, I’ve been more self conscious than I think I’ve ever been. It hit a low point when D2′s band director asked me where she got her red hair. All I wanted to say was “she got it from me you blind asshole”, but I didn’t. Because I’m a good girl.

Then last spring I was sitting with SG outside his office and a couple we’ve known for years, but haven’t seen for almost 2, walked by and didn’t recognize me when I spoke. I told SG that and he said “no, of course they recognized you, they’ve known you 20 years”.

But moments later they came back and looked again and said “Oh my gosh, we didn’t recognize you! You changed your hair!” You think??

They laughed and said they were going to call SG and ask who the woman was with the short blond curls. Really? Short blond curls? Yeah, I don’t know anybody like that.

So now the good news. It’s slowly been getting a little darker. Yes, most mornings I look like Gene Wilder but there may be hope.

Anyway, Saturday we had a garage sale to fundraise for D1′s band trip to Chicago and late in the day D’s 2 & 3 came running in to tell me the “great news”. They know me well. It turns out there was a woman outside talking to my mom and the girls and when I came in the house, she said to D2, “Was that your mom? You’re so lucky to have gotten her beautiful red hair”.

RED HAIR!!

And she was talking about me!!

Baby steps.