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.

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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”.

A perfect excuse – or is it?

D1 said something last week that is sticking with me. Something that she blurted out with no hesitation – even in front of her friend.

I’ll get to what it was in a minute but a little history first. The elementary school the girls go/went to is a very crunchy granola peace love and understanding kind of place. Which is great! We love it there.  They have a wonderful “peace choir”, they do marvelous earth day programs and the are well-known among the other schools for the great music program.

That said, we’ve been there for 10 years. Ten years of programs, many of them the same. Over and over until the words come back to haunt you in the dead of night. When my patient wonderful loving husband says the music teacher is a loon and he’ll likely die if he hears another Indonesian Gamelan concert, you know it’s bad.

So let’s go back to last week. D3 knew there was an Earth Day program and opted not so sign up for it. She thought she was in the clear. The poor thing has been going to these things since she was 1. She didn’t want to do another, she didn’t sign up. End of story right? Wrong.

Turns out the head Peace Choir lady is also a 4th grade teacher so she decided that ALL of the 4th graders should participate by being in the background choir. D3 was pissed!!!! But, good parents that we are, we bought our earplugs and told her to suck it up and go.

We won’t even get into the part where she stood in the back row frowning and barely mouthed the words. This isn’t her story.

This is about D1. While on the drive back from Cultural Cooking club (I know), she asked what our plans were for that night. I reminded her about her sister’s program and the audible groans began. As well as the laughter from her friend in the back seat because she didn’t have to attend.

Then the excuses started.

I can’t go because:

I have too much homework.

I have to practice my piece for the state music festival.

I think I have a fever.

Someone should stay with the dogs.

While I shared her pain, I shot down them all and reminded her how many concerts/programs her sisters have had to attend for her. Then she hit me with this:

Mom, can’t we use your cancer as an excuse to get out of it?

Ok first, it surprised me that she’d just blurt out the C-word like that in front of her friend.

Second, my cancer is generally the motivator that pushes me to go to these things even when I don’t feel well. Six years ago I didn’t know how many of these events I’d live to see. Each one is precious and just because D3 is on the tail end of these things, and she’s as tired of them as we are, doesn’t make it any it any less important to see each one.

Lastly, is she really trying to benefit from my cancer? Is her silver lining that it gets us out of stuff? Honestly, I can see that.

It was a week ago but I keep going back to it. I keep hearing her voice in my head and I can’t help but wonder if I really have used the cancer excuse too many times. I know I haven’t for anything major but what of the small stuff? Have I skipped too many trips to the pool or downtown events that SG has taken then to while I rested? I didn’t think so until now.

The other thing that bothers me, that is out of my control, is that she’s so desensitized to my cancer that she just blurts things out about it at will. This is the girl who used to not want me to bring it up because it’s “awkward”. She’s acutely aware that it makes people uncomfortable yet she has no issue saying that in front of her friend.

Is guess maybe that’s a good thing? She doesn’t see it as a big deal anymore? I know it’s become routine for me. Just another fact of life. The way things are and will continue to be since my treatment will never end. At least not unless we run out of treatments, then the rest is irrelevant.

So tell me my friends. Is this a good thing? Has it become a non-issue? I explained to her that the cancer is what makes me go, not what prevents me from it. I even told her why – that I’ve never known how many I’ll get to see.

She gets that but she still hates the “We’re one small voice” song.

I’ll give her that one.

Diagnosis week 2012

Diagnosis Week should in no way be confused with Spring Break Week 2012.

There will be no topless pics because well, ewww! There will be no Annie Gone Wild videos because quite frankly I lack the energy and again, ewww!

This week perfectly lines up with Diagnosis Week 2006 – Valentine’s Day was a Tuesday, my tumor blew up on Thursday the 16th, I was told I had metastatic cancer on Sunday the 19th and well, you get the picture.

So this one is messing with my head a little. I skipped the elementary school Valentine’s Party because I just didn’t feel like flashing back to running out of energy mid party and having to sit down like 6 yrs ago. I’ve tried to change things up a bit.

Last night, instead of sitting on the couch with a heating pad on my stomach, I played Bunco and drank wine. It was an improvement.

This morning, the dreaded body part exploding Thursday, instead of laying on the floor in the hallway in pain, I ran some errands. I bought a coffee and watched Survivor. Hey, I watched “Survivor” – get it? I just realized how appropriate that was. I’m witty even when I don’t know it.

Tomorrow, since I have no recollection AT ALL of what I did on the Friday 6 years ago except stay in bed and be moderately dead, I think I’ll go for a long long long walk. Because I can.

Saturday night, instead of going to the ER and having surgery, I think I’ll hang out at home. Again, because I can.

The rest of the weekend I think I’ll wing it. My parents are talking about coming over Monday to see the girls since they have President’s Day off. I’m sure that’ll be an improvement from when they came over on the 19th 6 yrs ago. I was in the ICU and they picked up the girls from their night at the neighbor’s while I was in surgery. Last time they had tears and a dying daughter.  This time I’m thinking frozen yogurt and TJ Maxx.

Life tends to come full circle and this week I get my do-over. No exploding body parts, no 50/30 blood pressure and no surgeries. Yes, I will probably feel crappy from the Nexavar but maybe that’ll remind how far I’ve come. If I start to forget, I’ll go back and read my post from this time last year. That one always brings it home for me.

Who knows, maybe there will be a little Cancer Patients Gone Wild – but there won’t be videos.

Six years and counting. It feels good.

A Community of Strength

When I was first diagnosed with cancer, I had no idea where that fit into the rest of my life. I was still a wife, mother, daughter and friend but now I was also a cancer patient. One of these things is not like the others. One of these things just doesn’t belong.

After psycho nurse asked me how I “felt about having young children and cancer”, it got even worse. I didn’t know what that meant for me, or my husband and daughters. I didn’t know what that meant for my future or if there would be one.

I just didn’t know.

I looked for a support group locally for other “mothers with cancer”. I contacted the American Cancer Society and was told there were many breast cancer groups and there would be moms in there. Only problem, I don’t have breast cancer. There were also “look good feel good” groups for women going through chemo. There would be moms there.

But again, I wasn’t going through regular chemo. I was on a targeted therapy, a daily pill forever, and  I wouldn’t be losing my hair (until now).

The one thing that didn’t belong was me.

I searched online. I googled “moms with cancer” in every form I could think of. I found support groups for kids whose moms have cancer. I found more breast cancer support groups. I found parenting through chemo websites. Again, none that fit my situation. So I tried to figure it out on my own. I wasn’t all that successful.

I joked with friends that I wanted to start a cancermom.com website but I never did. I was diagnosed in 2006. In 2008, Mothers with Cancer was started but I didn’t notice.

I didn’t notice until Marinka suggested I join twitter. I put the word cancer in my little bio thing and I started getting followers. Fellow women with cancer who didn’t care what kind I had. Most of them have some form of breast cancer – the cancer I secretly wanted if I had to have one, simply because of the sense of community they seemed to have. I know that’s a ridiculous thing to say, but when cancer enters your life, rational thoughts take a flying leap.

I started looking at the blogs attached to the twitter names and realized I’d missed out on a whole world of support. Cancer women. Amazing women who, despite having a different diagnosis, knew exactly what was in my mind. There was Susan @whymommy from Toddler Planet, Jenny @jaydub26 from Get out Gertrude,  Rachel @ccchronicles from The Cancer Culture Chronicles.

This week Susan and Rachel passed away on the same day and it broke my heart. Yes for me, but mostly for the women who share their diagnosis because for them, it hits too close to home. This week there were also two members of the GIST community who died but those didn’t touch me in the same way. I suspect it was because they were men. I know that sounds really callous but if I’m being honest, it’s true.

With these women and moms it was different. I didn’t often comment on their blogs and don’t suppose, other than Jenny, that they really even knew how much I followed them. Rachel was always there to comment on a cancer related tweet, to offer support in 140 characters or less. Jenny and I entertain/distract ourselves with Words with Friends on a constant basis now. She is an inspriation and I consider her a genuine friend, not just someone on my “friend list”. And Susan, she was my go to blog when I needed to find out how to do this mothering with cancer thing with  grace.

These are just a few of the strong women who face their mortality everyday and do it with such strength that I am in awe.

I am sorry I didn’t open myself up sooner. These women and others on Mothers with Cancer  know how to do what I’m supposed to be doing.

I believed I needed to find other people on the same medication, or with the same diagnosis to have something in common. I was wrong. These women already knew what I didn’t – that drawing from collective strength is so much better than going it alone!

It doesn’t matter what kind of cancer you have or what kind of treatment you go through. What matters is the shared frame of mind. Finding those who understand what goes through your mind in the middle of the night. Your fear of leaving your loved ones. Your fear of what lies ahead.

To these fabulous women and so many others, I want to say thank you.

Thank you for sharing your struggles as well as your strength.

Thank you for allowing me to share your experiences.

Thank you for writing my own thoughts much more eloquently than I do.

Thank you for showing me how to die with grace and dignity.

Thank you for reminding me to LIVE!

For all that and so much more, I will always be grateful!

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!!

 

 

Fitness Helps Patients in the Fight Against Cancer

As I mentioned yesterday, today’s post is by David Haas. He is a cancer advocate who blogs over at Haas Blaag who emailed and asked to do a guest post. It seemed like a good fit for my current frame of mind and where I’ve been the last few  weeks. However, excercise programs should always take into consideration various side effects such as hand/foot syndrome. There are days I can’t walk across the kitchen, let alone walk a few miles. I’ll post my thoughts on that tomorrow but today, I give you David:

A diagnosis of any type of cancer including breast cancer, skin cancer, colon cancer or even a rare disease like mesothelioma  (annie’s note – as long as it’s my cancer of choice, let’s add GIST to that list shall we?) is often shattering. Fear, depression, hopelessness, and anxiety are common and understandable responses with any cancer diagnosis.  One effective strategy for keeping energy levels high to fight the disease is to get regular exercise before, during, and after treatment.

What Can Fitness and Exercise Do for Cancer Patients?

There are several ways in which regular exercise and physical fitness help cancer patients to cope and fight back. For one, exercise focuses the patient’s mind on the physical activity, instead of on the on the disease. In this way it offers a respite from the anxiety that is normal any type of prognosis

Exercise also gives the patient a feeling of control over what is happening to his or her body, which is something patients often lack when facing cancer.

Exercise has been proven to help fight depression and improve mood. This allows the patient to face the diagnosis with greater equanimity.

Exercise promotes better blood circulation to improve energy and healing and to deliver the body’s own disease fighting agents as well as chemotherapy drugs to all parts of the body where they are needed.

When it is performed with others, exercise can prevent loneliness. It can promote bonding when done with a spouse or family member, and friendship when done with a group.

Fitness gives patients an overall sense of well-being and can significantly improve mental attitude, physical strength, and quality of life during the difficult battle with the disease.

What Kinds of Exercise Are Good for Cancer Patients? 

Walking, jogging, swimming, bike riding, and other cardiovascular exercises are great ways to improve stamina, muscle tone, and circulation, while increasing energy and improving the body’s immune response.

Doing resistance exercises with weights, either at home or at the gym, has an even greater effect on muscle strength. 

Yoga and Pilates are two kinds of exercise that are especially helpful to cancer patients working to stay fit, because they engage the mind and the body while improving flexibility and muscle tone, promoting calmness and relaxation.

By improving energy levels and the functioning of the immune system, along with promoting a positive mental outlook, physical fitness throughout the treatment process and recovery can give the cancer patient a boost in the fight against this devastating disease.

By: David Haas Writer of the Haas Blaag