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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Limited Time

I’m not really sure I’m qualified to do a 9/11 post. I had left the east coast just under a year before it happened. But, it’s on my mind today along with everyone else.

I watched in shock with the rest of the world that day as I willed D3, who was due any minute, to stay put. To please wait to be born so that her birthday wouldn’t forever mark a day of such sadness. I mourned for the city I had grown to love and tried to reach the friend whose husband worked in one of the towers. I didn’t know which one but it didn’t matter. Thankfully, he had gone to the New Jersey office that day.

So many stories of the people who should have been there but weren’t, mixed with the stories of the people who shouldn’t have been but were. The ones who went in to rescue them and never came out. It is a seemingly unending list of those who died, mourned, prayed, survived.

Maybe this post is less about 9/11 and more about the frailty of human life.

Maybe it’s written under a cloud of drugs making me especially sick today.

I don’t really know. But my heart breaks for all those who witnessed such a horrible event and faced such life changing loss.

We so often take these beautiful fall days for granted. Hell, we take all of them for granted. That the beauty could be mixed with such horror was incomprehensible but it’s a part of that day, a reminder for anyone who watched.

I remember doing the NYC tourist thing early on and standing in awe below the towers. Being from a semi-small town I was also amazed at the number of people going in and out. That is what I remembered as I watched the news that day. The people. So many people.

There is an advantage to having cancer long-term. Though I sometimes take my additional time for granted, I occasionally get reminders of the gift I’ve been given in that I get to say good-bye to my family and friends when the time comes. Too many people have that right taken away. Today is that reminder for me again.

Today I will make an extra effort to make sure my family knows I love them. I don’t think they doubt it but they can never be told enough.

Even if you aren’t facing your mortality in quite such a direct way I think the reminder still applies.

Treasure the time you have.

Treasure the ones you love.

 

 

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.

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”.

My big furry baby

My shelter dog is getting older. She turned 9 this summer and has slowed down considerably. She still falls asleep with her ball in her mouth and wants to play 24/7 but between throws she takes breaks.

She finds the cool shade under the maple tree and watches for her squirrel friend to shake its tail and chatter at her. When it does, the ball is forgotten. Sometimes for hours.

They’ve been friends for years, she and her squirrel. Either it’s the same one or generations of them are teaching their young about the friend at the house on the end of the block. The big red furry friend who will watch and play and chase but never harm.

She’s a gentle soul, my sweet girl. She knew I had cancer before I did. She’d stretch out next to me and gently place her head on my stomach or side for months before the pain began. It was constant enough that I begin to notice the pattern that hadn’t existed before. Her eyes looking up at me as if to say “can’t you see what I’m trying to tell you?”

When I came home from the hospital, she was still there beside me but on the floor by the couch with her head on the cushion. She was extra gentle with me because she knew that I’d finally listened to her but still wasn’t well. She knew that now I needed comfort instead of warnings. She didn’t jump on me when I came home but instead, pressed gently against my leg as if to say welcome home.

We were friends from the second I saw her at the shelter. From the moment she stood up by the fence and placed her paw on my arm and her head in my hands. Her eyes asked me to come in and play, then asked to go home.

Though she loves the rest of the family, she’s mine. SG calls her a “momma’s baby” and it’s true.

When the toaster cord falls after I unplug it and it scares her, she runs to me for reassurance.

When SG gets up in the morning, she takes his place next to me. Curled up against me for warmth and comfort. And memory foam. She’s fooling no one, memory foam may be the one thing she loves more than she loves me.

On the mornings after she’s played too hard, SG will lift her in next to me because that’s where she belongs.

I look in those big beautiful brown eyes and I wonder how much time we have left together. When a fatty cyst developed on her side last fall, I put my hand over it and cried because I didn’t yet know what it was. I still watch it for growth and will make sure she’s ok because that’s what she did for me.

She’s picked up a few bad puppy habits the last year like poking me in the leg with her nose when she wants something. She doesn’t quite know how strong she is. I’ve felt bad for her when she see the little one on our laps and wants to be a lap dog too. She and I don’t quite fit in the recliner the way her tiny sister and I do but she’s tried. And I let her.

No matter how cute the little one is, and how much I love her, it’s my big girl that’s somehow connected even stronger to me.

As I type, her big soft head is on my leg and I pray that we both stick around for a very long time.

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!

Hey Mikey, I like them!

School started today for my youngest two. It’s freshman only today at the high school so D1, who is a sophomore this year, is still home one more day but she’s asleep and it feels like it’s just me and the dogs.

Usually I put the girls on the bus, pour myself some coffee, put my feet up and rejoice but today I’m not there.  It turns out I didn’t want them to go. Weird right? I completely baffled.

Somewhere along the way this summer we went from “OMG, when are you going back to school?” (on around day 4) to “Wow, you guys kind of rock!”

They’ve gone from little girls I take care of to young ladies, if you’ll forgive the term from the 1800’s, who are great company. On days like this I am so thankful to have gotten to be here to see it.

Sure there were times they were arguing, as sisters do, and I wanted to send them to Grandma’s for a month or two but the days I wanted to keep them seemed to outnumber the others by far.

We’ve raised some pretty awesome people!!

I’m not saying I’ve never liked or enjoyed time with my children, you all know they’re my life, but I am saying our relationship had evolved. I’m no longer just that caregiver who gets tired. We look out for each other. Maybe it’s always been that way but something is different.

I realize I’m making little sense. Like I said, I’m baffled. Thank you for humoring me.

I don’t know how long this will last. I’m sure I’ll get used to the quiet soon and be back to enjoying my time alone but for now I’m tempted to go wake D1 and make her talk to me.

I’m sure that’ll go over well.