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

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!

An educational tour

In honor of my friend Marinka’s inpending trip to Montana, I’m reposting this as a refresher. I think she’ll find these tips handy!

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SG and I escaped the kiddos for a couple of days over spring break. One of the days we spent at Mammoth Hot Springs just inside the north entrance to Yellowstone.

I learned a couple of things that I’d like to share with you.

The 1st:

You think?

Sadly, so many park visitors have decided it would be fun to stick their fingers in hot pools, that there is now a need for a sign like that. Kind of sad really.

Oh, and in case you think the thermal features double as playground equipment, I give you this, in several languages:

Kind of gives new meaning to the phrase “blowing smoke up your ass”. I especially like the guy with the stylish man purse and the woman pointing at the soon to be boiled child. Again, hot water will scald.

My new dream job? Drawing obvious signs for tourists.

My last discovery? When you’re as tough as this guy, you can get away with any hairdo you want. Even a cool windblown faux hawk sort of thing. Justin Bieber wishes he had hair like this!

Lest you think I snapped this shot from anywhere other than the safety of the car, I leave you with one parting thought from the handy-dandy rear view mirror hanger they gave us at the entrance:

It’s not a petting zoo people!

Checking in

Hi – I’m not sure what has happened to my will to post these last months. I think I started off fairly strong early on in the process of building this blog but then I somehow just lost interest. If any of you are still checking in, I apologize.

I do have an update. I had a scan last week and after 25 months on Nexavar, it’s still working. YAY! I had a bad feeling about this scan because I just felt “different”. I’m not sure how or why but something has felt off. I’m now assuming it’s my newly acquired extra abdominal fat adding pressure. Or maybe it’s the cyst on my one remaining ovary (TMI, I know). Yes, I will call today to get that checked.

Anyway, I’m doing well and will now make shedding a few pounds my newest priority. I got a GPS watch for Mother’s Day and it was perfect timing because the cost of it guilts me into walking. No, it wasn’t my family trying to tell me something – I asked for it.

In other news, I seemed to have gained a reputation for being that mom who bakes. I was making cookies the other day while D1 had a friend over. She was sitting at the counter watching and then looked up at me and said, “You know, I’ve admired your work for years but have never actually seen you in action.”

Two days later, D3 was across the street visiting some school friends who had a lemonade stand. Apparently it was pretty gross so she came over to see if we had any mix they could add to give it some flavor. As she was walking away, one of her friends yelled “Any chance you guys have a cake or anything over there?”.

Luckily I had strawberry-rhubarb bars cooling so she took some back with her. They went over well.

I’ve always had that feeling I was just that mom who stayed home and did nothing so it was good to know I’ve built a reputation for something other than that!

 

Happy New Year my friends!

Sometimes I forget that when you disappear from a blog that is heavy on cancer posts, people might suspect you’re having a health crisis of some kind. Or that maybe it finally got me.

That isn’t the case – thankfully. Or not, depending on your perspective.

Life just somehow got in the way of my writing. 2011 was a heavy topic sort of year and I found that I didn’t want to write about it. Although I have to say, after writing my 5yr cancerversary post, I felt like a huge weight was lifted off and I’ve been able to put much of that experience deep in the back of my mind. It helped so much you’d think I would continue to do it.

I’m a slow learner and checked out instead.

I mentioned along the line all the stuff that was going on with friends and health issues. D2′s friend lost her mom in January. I lost my friend K in August. My daughter’s friend has been fighting leukemia since September and another dear friend and her family lost their husband/father in October. It was all just too much darkness.  I think maybe I didn’t want to see it in print.

Now it seems, there are things I want to share with you.

On a bright note, I made a trip to San Diego mid December to see my nephew graduate from Marine Boot Camp. It was a truly joyous 3 days that showed that no matter the teen struggles, it can all turn around. He is so happy with his decision to become a Marine and the pride just radiated from him. He had a few days leave and went back yesterday. He is a new man and I am so proud to be his aunt and Godmother!!

On a darker note, while we were home for Christmas, my dad had is hip replacement replaced. Does that make sense? Dad got a new hip close to 6 years ago. A year ago he got a call that the artificial joint had been recalled. Is that not the stupidest thing you’ve ever heard? The socket and ball were both metal and it turned out that was a bad concept.

The two metal parts were rubbing together and it was putting toxic metal shavings into his blood stream and destroying the surrounding tissue. Do they not think of these things before they approve them??? Who the hell is in charge of that?

After some struggles getting the company to pay for testing, they hired a lawyer (a trustworthy family friend who happens to be a killer in the courtroom) and things started moving along. A year later, he got the revision! He is such a strong man with such a high tolerance for pain that it broke my heart to see him after surgery looking a little more frail. This company needs to pay dearly!!

On the other side of the family, I received a call from my MIL 6 days before Christmas asking me if my cards were out yet. She felt the need to remind me exactly how many days were left until Christmas and which of her friends should get their ANNUAL card.

When I replied that I was well aware of how many days were left and that I’d been busy with my trip to CA and 3 kids, she told me she’d better “let me go”. It was probably for the best. It’s been 18 years and the previous 17 she reminded SG to get cards out, I suspect on the 19th Christmas she’ll go back to that. I enjoyed it

Oh yeah, January 16th is my next CT scan. I want to thank all of you for talking me through the last several. I still find myself torn between wanting to be tumor free and wanting to stop taking this damn Nexavar. The love/hate relationship continues.

I don’t know what 2012 will bring but I promise I’ll be better about keeping up with posts.

I wish all of you the very best in the new year. May it be one of peace, prosperity and of course, good health! 

 

Dear Congress, You guys are dumbasses! Sincerely, Me

So it appears it takes an act of Congress to get me to write a post these days. No, this blog post was not tucked into a highway bill and it was not sponsored by any major corporation! No lobbying was done on my behalf.

It’s this whole pizza sauce as a vegetable thing – yes I realize it’s not a new rule. It’s been part of the nutritional guidelines all along but dammit, this would have been the time to change it. Revamp the guidelines into something that helps our kids, not hurts them.

No, I don’t expect the government to be in charge of feeding our  kids but I do expect some sort of accountability to them. Accountability to the health and well-being of the future generations.

I DO NOT expect them to sell out to ConAgra and Sysco and other makers of refined processed crap!

We are fortunate enough to be able to afford to put fresh fruits and veggies in our daughters’ lunches, but there are so many families who rely on free or reduced cost lunches to feed their children. What about them? What about their  nutritional needs? Do they not deserve high value foods just because they can’t afford to supply it themselves?

This is not about big government reaching into our families, or telling us what to eat, it is about COMMON SENSE!

The CDC estimates about 17 percent — or 12.5 million — of children between the ages of 2 and 19 are obese. But it’s not only about obesity. It’s about what we put in our children’s bodies.

For me, it’s also about trying to make sure that they don’t end up like me. No I’m not saying my cancer came from processed foods. My mom was a good cook who made almost every meal from scratch but the fact remains, I don’t know where it came from.

There is no certainty but I do know for sure that when I read the ingredients on packaged processed foods, most of them are chemically based. They are preservatives and additives and fake colors. They’re chemicals my chemist husband advises against ingesting.

It’s about improving the odds, decreasing the number of carcinogens we feed our children and trying like hell of protect them. Because of my drugs, anytime I eat something processed, my body says “NO, get this out of me!”  It recognizes that this is not anything I should be ingesting. I can tell which restaurants in town use fresh ingredients. It’s that simple. My children rejected school lunches years ago because every time they tried them, they felt sick afterwards. Again, it’s that simple. Our bodies know.

Yes, even the fresh stuff can have bad things in them – wash your apples people – but if we’re going to play the odds, I’d rather do it with an apple than tomato paste. There has to be a connection. There are so more people, from my perspective, who have cancer than they did when I was young. So many more parents leaving their kids or watching them go through treatment.

THERE IS A CONNECTION! It needs to be recognized. I’m not saying if you feed your children a frozen pizza from time to time you’re giving them cancer. Please don’t think I am. I do it too. Those $5 hot and ready pizzas are so appealing on busy days. But it’s about balance. It’s about not encouraging the substitution of chemicals for real food as congress had done.

It’s about not sacrificing the health of our children for special interests!

At some point, if they’re going to encourage feeding our children crap, screw the environment and the air they breathe, and only look out for their pocket books, politicians needs to be held accountable. Not because government should tell us what to do but because they are the ones with the power to change the guidelines. They are the ones we elect to make decisions on our behalf. OUR behalf, not the lobbyists.

Today I’m saying you screwed up! The welfare of our children was in front of you and you chose to ignore it, to give into millions of lobbying dollars. Most of you leave office as millionaires because you give in more often than not.

Congress, you guys suck!!

 

 

A walk in the rain

Some day are easy. I get in a routine, I plan things out and they go as expected.

Some days they don’t. Friday I was ready to go to Portland for the 1/2 marathon. I was packed, I’d double and triple checked everything from undies to weekend instructions for SG. It was going to be an easy sort of day.

At 7:30 the phone rang and I heard “Sweetie, I need you.”

It was my friend and her husband was dying. She needed me to come be with her daughters as soon as mine got on the bus. I didn’t know what to say. I wanted to drop everything and run to her but I think I just muttered something about Portland.

She’d forgotten I was leaving and as soon as I reminded her I was on my way out of town, she apologized and said, “No, go. You have to go.” But I was first on her list and she needed me. And I left town. I hate that.

I didn’t really have much choice. Other’s were planning on me going and of course, my friend here wouldn’t have let me stay and skip the trip. I’ve been with her much of the last 6 weeks and have been by her side since I got back but it still bothers me that I left. She is my friend and I would do anything to make life easier for her.

Early Sunday morning, before I woke up to get ready for the race, I had a dream about them. I bizarre haunting dream where her husband and oldest daughter talked to me then quietly walked away. He said he was finally leaving the hospital. My friend was in a beautiful princessy type dress and there was a young man by her side. I didn’t know who he was but he obviously loved her.  He seemed like a younger stronger version of her husband.

Her husband called him her knight in shining armour. He walked away with their daughter as the young man and my friend went the other direction. Her husband looked at me back and said she’d be happy and to take care of her.

I woke up knowing in my mind that he was gone. He was. He had passed away late Saturday night. I didn’t find out for sure until much later on Sunday when D1 began texting me. I somehow, through texts, tried to talk her through losing another parent of a close friend. In this case, her best friend from kindergarten.

It was a day of extremes. I walked the 1/2  marathon faster than I’d expected. It was a huge triumph for me but I knew in my heart it was a day of huge loss for people I loved.

I thought about them and others while I walked. I listened to my music and read the shirts of the people around me.

An older man had pictures of his wife  at various ages in the same super woman costume printed on the back of his shirt. The words “perfect pose” and “so many years in just one memory” printed above. He was walking for her. In her honor. In her memory.

The tiny little woman with a sign that said “This is my 44th marathon. How about yours?” She was easily 80 and put me to shame as she walked a full to my half. So much strength in that tiny body.

People walking for different causes with photos of people they had lost.

So much emotion in so few hours.

My win among all their loss.

I celebrated. And I grieved.

I talked my daughter through the loss with a confidence I didn’t feel. I cried and texted because I didn’t trust myself to speak. I shared my emotions with friends who love me and who I am so very thankful to have.

Today I wonder how these young girls I love so much, will survive without their father. A father who gave them all necklaces as he said goodbye. Necklaces to remember him but not replace him.

Then I wonder how he did it. How he found the strength to say goodbye. How do we ever say goodbye to those we love knowing we are leaving them in so much pain?

I will go with my friend when she picks up his ashes. The little bit of what’s left of a man who, in life, was such a huge presence. I will hold her hand and cry with her as I try so hard not to think about how difficult and painful his death was. As I try so hard not to imagine my own.

As he passed away, a single tear fell from the corner of his eye.

Many more have followed.

Seasons of change

It’s cool and rainy today and I can see the change in the leaves as I look over the valley below.  Things look, feel and smell different from even just yesterday.

There are obvious changes in our lives right now – my youngest turning 10, my oldest in high school, my second in middle school enjoying the freedom of moving from class to class and having a locker. Little changes in the grand scheme of things but huge in their worlds. Changes that have put us a little off-balance but they’re workable. We’re all still together.

But at my sister’s house, her oldest left for the Marines this weekend. Not a small insignificant change but the rock your world kind. She gets up in the morning to a room full of his things but not his presence. Her baby no longer lives with her and she asks questions.

Was he ready to go?

Did I do what needed to be done to prepare him to leave?

Will he want to come back?

Will he miss us?

What should I have done differently?

Can I get a do-over?

But we only really get that one chance. We do the best we can as parents and hope it’s enough. We hope they have fond memories of the life we’ve given them. We hope they have enough money to cover therapy for the times we screwed up!

As you know, with a scan on my schedule for next week, I begin to get nervous and ask:

Am I doing enough?

Am I enough?

But with no current answer to those questions, I simply watch the seasons change. I have no idea where we will be at this same time next year. What my children will go through between now and then.

As they get older, I hope that we’ve done well. As I watch my nephew bravely leave home, I hope that we’ve given them the tools they need to move on – to exist in an orbit in which we aren’t at the center.

As I watch the colors turn and know we are heading into a darker colder season, I can’t help but think it also brings the hope I am looking for. 

Clean layers of snow will cover dead grass and fallen leaves. Long dark nights will give way to gorgeous snowy days full of ice crystals floating in the bright winter sun.

And we will be given our clean slate.

Our do-over.

I’ll wait

I’m home. It’s late and it’s quiet.

The big dog is sleeping near the foot of the bed. The little one is snug in her kennel next to my side of the bed. Both of them most content in a room with their people.

The rest of my people are sound asleep. The occasional elbow striking the wall reminds me they are here even when I can’t hear them.

I know they are safe in this house with me. Warm in their beds and within seconds of my reach should they need me.

It’s the advantage of a small home.

But not all of my people sleep. D1 isn’t home. Well, she might be asleep. Curled up in her seat on the bus on the way back from a volleyball game 3 hours away. I don’t know.

I don’t know if she sleeps or chats with friends.

I don’t know the score but I do know they lost. She seems ok with that. 

I don’t know if she aced any serves or got any great hits.

I don’t know where she is right now. What mile marker they’ve most recently passed.

I don’t know who’s driving the bus or how safe he is.  I don’t like not being in charge of her safety.

I do know she is well fed. She told me when she texted they’d left town. I made sure she had plenty of nut safe goodies to choose from in her sports bag. As we know, I AM that mom.

She texted she needs ankle supports. She’s an outside hitter and spends much of the game jumping. I texted back and asked if she’s ok.

Immediately my mom mind assumes the supports are because she hurt herself. She’s fine.

I meant to buy them today but didn’t make it to the store. I’ve been putting them off  because they’re a bit spendy and priced per ankle but I’ll add it to my list for tomorrow. As if ankle supports will keep her safe when she’s out of town without me.

Mom’s denial. Mom’s justification. Mom’s neurosis.

She’ll need money for the coffee cart at school in the morning. She won’t be home until after 1:00am. She has class at 7:50.

These are the things that go through my mind as I wait for her text to tell me she’ll be back at school waiting for a ride within 20 minutes.

I miss her here this time of night but know this will be the first of many nights that I’ll wait for her to safely come back to me.

I doubt I’ll sleep.

I began my daughters’ lives with very little sleep.

I have a feeling their teenage years will involve very little sleep.

When they leave for college I’ll text them in the middle of the night to see that they’re safe.

I’m the mom. It’s my job.

As they grow into the amazing women I know they will be, there will be so much time spent away from me. They’ll leave the safety of our home to find themselves. To become who they need to be, where they need to be.

But it’s ok. I’ll keep track of them as well as I can and be there as quickly as possible if they need me.

They will find their own paths but will always know that there will also be one that leads them home.

I’ll be waiting.