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.

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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”.

Look Ma! I’m still alive!

Holy crapazoid! Have I really not posted in 4 months? I’d apologize but based on my site stats, nobody was checking in any way. Ha!

I’m not sure why today feels like an update day but it does, so there.

Can I use the fact that my right arm has been in a cast since early November as an excuse for not writing or should I fess up and simply admit I haven’t had an original thought in ages?

I must have news of some sort other than the fact that my charming Elvis Doppelganger hand surgeon decided not to do surgery on my torn scapholunate ligament (say that 3 times fast, I dare ya).  Given that I’d have to go off my life saving drugs to perform a surgery that may or may not decrease my pain and increase my range of motion, I’m good with that decision. And might I add, a surgeon who avoids the operating room unless it’s absolutely necessary is my new favorite kind? I love my Elvis doc!

Oh, I do have news! I walked a full marathon in October and finished it with energy to spare – D1 by my side! We sort of rocked. Granted I was able to go off Nexavar for 4 days while I did it – oncologist approved hiatus – so I had more energy and less foot pain. Always two key components of a successful marathon. At least in my opinion. We had so much fun and I was finally the mom she wanted for a few days! Now that we’re not training and she’s back in full highschool/teenager mode, I miss her!

I have a scan coming up on Tuesday which feels a little huge again. I think my lack of energy and overall general feeling gross lately is mostly due to the fact that I got back from the marathon and sat down. And I’m still sitting. Except when I’m eating. Yeah, that could be it. I’m sure it is but it’s always nice to get that confirmation that all is well every 4 months.

There have been a couple hard deaths on the GIST support site lately. One woman hit especially hard. She was diagnosed when her youngest was 7 days old. The cyst they saw on her ultrasounds turned out to be cancer. She had a rare GIST mutation but was able to stay strong and battle it for 10 years! A couple of weeks ago she simply ran out of treatment options. The good news is she got to spend 10 extra years with her 2 daughters but the bad news, as always, is that 10 years isn’t nearly enough.

When I was first diagnosed, I searched out any other moms I could find that were facing this disease. Her grace and strength was encouraging to me in my quest to find my way as a new cancer patient mom. I will miss reading her updates and her constant encouragement of others on the board. My heart breaks at the pain her family must be going through. Her daughters were about the same age as D2 and D3.

As I approach my 7 year cancerversary next month, I remember what an amazing support all of you were when I told my story on my 5th anniversary and I thank you from the bottom of my heart! I hope to check back in next week with news of another good scan.

Or maybe I’ll be back sooner. A lot feels like it’s changed around here lately but as the girls get older, I’m not sure how much of it really is mine to share. I guess I should make some sort of resolution to keep writing. My stats for last year were pitiful.

Belated Happy New Year to all of you! I’m going to see if I can find a new look for this boring old blog. We are fogged in and grey today and I need some spring!

A

Menopausal Mother Nature & Her Hot Flashes

I grew up in a mountain valley at an elevation of just under 5,000 ft. I have a great respect for Mother Nature and her mood swings.

It wasn’t unusual growing up to wake up to several inches, if not a foot or two, of snow. I’ve waited to go skiing until they had a chance to dig out the lower chair lifts. Ski hills that couldn’t open because of too much snow.

I walked to school in temps that froze my nose hairs. Yes, it was uphill both ways. Instead of a ride, I got this sage advice: “Breathe in through your nose so you don’t freeze your throat and lungs.

But I’ve always drawn energy from nature and her extremes. From the breathtaking beauty surrounding me.

When we lived on the east coast, I survived by taking the chairlift to the top of Stowe in order to have a big open view again. I get claustrophobic if I can’t see for miles.

I’m claustrophobic now. In the middle of the convergence of 5 river valleys, in our house on the hill overlooking miles, I can’t see a damn thing.

Out here the humidity is so low that it storms without rain. We get lightning storms that provide no moisture. They strike and spark and smolder until just the right wind comes along. Then they explode.

A single smoke plume on an otherwise clear blue day signals the beginning of a forest fire. Mother Nature blows on the tiniest spark until it feeds on dry tinder,  beetle-killed pine trees and dry needles and takes off.

In the middle of the night I dream of water dropping helicopters and slurry bombers – the big airplanes you see on the news dropping red retardant. And I dream of campfires and s’mores only to wake up and realize it’s the smoke coming in the window that brings on the otherwise enjoyable images in my mind.

There is a fire in Idaho that used to be five. They’ve grown together into a massive unstoppable force, spanning hundreds of thousands of acres, moving our direction. Other fires have started closer to home –  in every direction. There are evacuations miles south of us but the smoke travels faster. It catches the wind and settles in the valleys and takes our breath away with it. Burnt pine needles settle on our trampoline. Odd little things that hold their shape in the wind for miles then dissolve when you touch them. Falling ash gives the appearance of snow in the middle of a hot September day.

Smoke from a forest fire over the Sawtooth Wil...

Smoke from a forest fire over the Sawtooth Wilderness in Idaho. (Photo credit: Wikipedia)

The last weeks I’ve opened the curtains on our big picture window overlooking the valley and I see nothing. Where the houses and mountains and trees used to be there is only smoke.

Daily “red flag warnings” mean that the more wind and humidities in the single digits will continue. Air quality advisories are checked as often as the weather. In my quest to do long training walks for the marathon, I get only “limit your outdoor exposure”.

The sun is stunningly beautiful and eerie. It’s a huge red ball in the sky that you can look directly at in the middle of the day. At night the sunsets are nothing short of extraordinary.  My Science Guy would point out that “particulate matter makes a gorgeous sunset”. He’s a romantic that way.

It’s an eerie gold this morning that brings on a growing sense of Armageddon. Mother Nature is a being a bitch. I hear she’ll bring us rain in October. As news breaks of a new fire cresting the mountain and moving down into one of the valleys, I have to say I’m tired of it.

D1 says it never feels like summer until she smells smoke. I think it’s going to be summer clear into fall. The amazing brave firemen and women aren’t going to catch a break until the snow flies.

With any luck it’ll be a winter of feet rather than inches of snow. Enough to cool off any remaining sparks. As nighttime temps drop and humidity rises, we hope for a break.

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.