Talked the Talk!

The Boston Marathon Jimmy Fund Walk has come and gone and we rocked it! Not in a "I ran a marathon" kind of way but in a thriving, surviving, high-fiving kind of way. We completed the half marathon course, left no one behind, and felt pretty great about ourselves. All in all, a total win! 

Thanks again for all of the support - I'm sure we'll do it again next year!

Walk the Walk!

 Team hats! Mine is the gold because cancer makes me special :-D

Team hats! Mine is the gold because cancer makes me special :-D

Tomorrow I take on the Boston Marathon Jimmy Fund Walk for the Young Adult Program at Dana-Farber Cancer Institute. Mike, my sister Alison, and my cousin Marisa are walking it with me. I'm really excited to do this. We'll meet up with the YAP team at the finish line in Copley Square and we might even see my smiling face as a mile marker along the way! 

We're going for the half-marathon route (whoa that's a lot of walking!) and it looks like it's going to be a beautiful day. I'm not really confident that the half-marathon is the right choice, I'm not in any sort of shape, but I really want and need a big win so with momentum, energy, and support all around, we should be good to go!

Many thanks to all of you who have supported our fundraising efforts! Wish us luck!

What's keeping me up?!

I've been lucky to not be struck by too many sleepless nights but tonight is an exception so I might as well write it down and invite you all into my insomnia. Welcome!

The chemo break doesn't feel as good as I hoped it would. It's awesome to have my weekends back and it's great to not be at the hospital every other week. My stomach does turn at just the typing of chemo and then the smell of Dana Farber wafts into my nose's memory. Chemo is not fun, but sitting around and waiting for cancer to grow enough to be visible on a scan is far less fun. I can't stop worrying and I can't turn my brain off.

(Quick detour about Dana Farber's smell - it's specifically the smell of the bathrooms that gets me. When I go to Dana for therapy or a non-chemo appointment, if I use any bathroom there I am immediately whisked to a chemo place. Associations are weird.)

In two weeks I'll have a PET scan followed up by appointments with my oncologist and my surgeon. There is a small chance that I could be a candidate for surgery and I am pushing to find out. Without going into too much detail, the surgery would take out a bank of lymph nodes from the infected area with the hope that any existing cancer cells are only in that area. There's no guarantee that it would lead to a NED (no evidence of disease) status and even less of a guarantee that it could be a cure (a word not really used in my case) but to me, if there is even a small chance that it might work, I think it could be worth the risk. I'm young, I've recovered quickly from surgery before and could hopefully do it again.

And that's what I can't stop thinking about - that I am young and there are lots of life things left to do. As we look forward, the biggest decision of the moment is whether or not to pursue surrogacy that would bring a baby into our lives. I finally asked my oncologist about the potential and she confirmed that I can't carry a baby, the risk of the cancer returning and having to make an incredibly difficult decision is too high. (Plus I think my science is broken but that's another matter entirely.) She also said that if we do want to pursue surrogacy then that means that we need to have a more detailed conversation with her about known facts and stats in terms of average lifespan.

I should insert here that she also said she believes that given my age and high tolerance of and positive response to chemo she believes that I am going to do better than the average. 

Here's the rub though, the numbers and the stats and the facts are culled mostly from patients who are decades older than me. I know that cancer doesn't decide its victims based on how nice they are or their age, but I can't really believe that those numbers can define my experience. Even if they did, how could I not think that my outcome could be that of the small percentage that survive? There was a 10-15% chance that my collapsed colon would turn out to be cancer, I am of the small percentage that had a wildly allergic reaction to my first chemo, I am of the even smaller percentage that has metastases only to the lymph nodes. Why shouldn't I be of the small percentage that lives? 

Plus, PLUS, there are advances being made every day. Just this summer the first Phase 3 immunotherapy trial for MSS-CRC patients (about 95% of the colorectal cancer patient community) was launched. I don't know much about it, but trust me that I'm learning, however I do know that one of the drugs being tested is the same that has done wonders for the melanoma community. 

In summary, my brain = science facts, babies, youth, frozen science babies. My heart = frustrated, sad, determined. 

Normal is as normal does

I had a CT scan last week to mark the end of 6 months of chemo. The scan would tell us whether the chemo had continued to work and whether or not I could take a break from chemo. The good news is that the chemo did its job and that I'm now on a chemo break.

With metastatic cancer, stable cancer presence is considered a win. My recurrence was isolated to a few lymph nodes and small to start with and they have shrunk to an unremarkable size which is great. The plan now is that I am off treatment until the cancer shows itself again.

I did say until up there. 

I'll tell you the rest of the story later, it involves me crying for the first time in front of my oncologist, but for the time being you should know that the chemo is working and I'm glad to take this much needed emotional and physical break, but the happy is mixed with sad. Even though the scans can't see my cancer and even though I tolerate chemo like a GD champ and even though I'm steeped deep in loads of all kinds of love, I'm still considered incurable and that is a sucky word to have floating around your head.

The Now and The Later

Today I start the 12th chemo treatment of this cycle. If all goes as planned, when Mike disconnects my pump on Sunday it will be the last needle of this cycle. While it is the last for now, there are more to come later.

I have known for awhile that my path is "chemo for life." Literally so. Until something new comes along, I will be on and off chemo. This is why it was so important that my current regimen worked as it is one of the least toxic but most effective poisons. I have a CT Scan scheduled for 8/16 and follow-up results on 8/19. What we hope to see is either more shrinkage or at the very least stability in the nodes. If this is the case then I will get a "chemo break." I need this break for my mental, emotional, and physical health so cross your fingers. For all the obvious reasons. This is the life though of a Stage IV colon cancer patient.

For the last treatment of my first chemo cycle I bought Stupid Cancer swag to wear, I made beaded bracelets that symbolized "healer" in morse code for all the nurses, and I planned a "no more chemo" party. It was an awesome day. 

This time though I am sad and I am tired. I hate knowing that in 2-3 very short months I will be back in the chemo chair. I will lose every other weekend to direct infusions, I will lose most of the next week to exhaustion, I will spend those 2nd weeks desperately trying to squeeze in all of the work and all of the fun and all of the quality down time. It is an unreasonable way to live life. If I had the energy to scream about it, I would. Actually, if I had the drive to scream about it I would. Instead I'll just say that it really sucks.

Frustration is the other name of the game. I am frustrated that my "action plan" is just to do the same thing over and over again until it either stops working or my body can't take it and I move to the next chemo. I am frustrated that there are no trials for me right now. I am frustrated that I am 34 and this is not what I should be worrying about. I am frustrated by all the parts of life that may be taken away from me. 

The above may explain why I haven't written much this time around. I am processing the sadness and balancing it with as much goodness as I can find. It's harder to talk about because I can't grasp it all - how could I expect most of you to? 

So, tomorrow I will have my blood drawn, meet with my NP, get hooked up for a few hours of in-hospital chemo and anti-bodies followed by 46 hours of home chemo. I will make it through the weekend with heavy napping, carbs, mint tea, half a pot brownie*, my mom, Mike, and Netflix. 

I'll celebrate a little if my scan results are what we're hoping for, though. Now go and enjoy your weekend for me!

 

*This really works! It puts me to sleep and the nausea is gone when I wake up!

Left Arm Bling

Today Facebook told me that it was a year ago that I was declared cancer free. Ahhh, those 9 months of cautious freedom. This news is hopefully the apex of a crappy week so here goes a somewhat lighter post to help all of our moods.

Left Arm Bling!

I wear 5 pieces of jewelry on my left hand/wrist and each is something dear and matters in my cancer world. Wanna know why?

Wedding Band: This one is reasonably obvious because I married the nicest boy in the world, but in a smaller way it represents our wedding day. That day was full of extreme joy! I was diagnosed with cancer 7 weeks before the wedding. We had both already lost a parent to the disease. This could have been a day of tears. Instead it was a non-stop lovefest with high-fives and dancing! If I could bottle an smidge of that happiness I could save the world from all its ills. It is pretty cool to carry that with me every day, wrapped up in a simple gold band.

Engagement Ring: There's more than the obvious at play here, too. I cherish this ring. Mike's dad gave it to his mom first. I wish I had known her but Mike and I met after his mom and my dad were already gone. I know little things about her - she had a beautiful singing voice, gave voice to all of her dogs, burped like a champ (the important things) - but it would have been really something to be able to tell Mike when I saw her in his actions or mannerisms. Here's something real that I do know: she bravely took on advanced lung cancer for more than four years and gave her all to her family. I'm proud to have her memory as an example of how to do this cancer thing.

Gold Bracelet: It's two days before Christmas 2006 and my parents and sisters have flown in from Florida and stopped in Boston before we were to all head for the Berkshires for our traditional holiday. My parents drop my sisters off at my apartment's holiday party but before they leave my dad says "I want to see you and your sisters in your bedroom." I figure we're in for a don't get drunk talk but instead he takes three boxes out of his pockets, shoves them in our hands, and says "here." We open them to find three identical gold bracelets that he had made from a chain he used to wear. My mom had told him that he was too old to wear a necklace so he took it off, took it to our jeweler to see what they could do, and kept it secret from even my mom! My sisters and I have worn our bracelets every day since then. We lost Dad less than two years later to kidney cancer. He did everything he could to stick around for us. I completely believe that his love for my mom and us girls kept him here longer than science imagined. Right now, when many days are rougher than others, this physical memory of my great dad is a great comfort. It is a reminder that I can do this and that I have a tall, brusque, bearded cheerleader firmly on my side.

Pearl Bracelet: Christmas 2015 my mom gave me this pearl bracelet with a seemingly random pattern of white and pink pearls. Turns out the pattern represents "fighter" in Morse code. I know she got it because she thinks I'm an awesome fighter but I think it works for both of us. My mom will not give up, she will not give in, she will keep on keeping on. She is my rock and I wouldn't be doing nearly as well without her fighting so hard alongside me. 

Bravelet: So many emblems but there's room for one more. I purchased a bravelet for myself after my most recent diagnosis. I like what it says, I like what it means, and dammit, I'm doing my best to abide by it. I recommend it as a gift, check out their list of causes.  

So there you have it, my left arm bling!

Sober. Somber. Ugh.

You're right, I have been ignoring you. When I have the wherewithal to focus on more than one thing at a time cancer with its lousy effects is not what I want to think about. 

But reality bites.

I went to my first cancer event last weekend, the Young Adult Cancer Conference at Dana Farber. I met my first YA colon cancer patients - all female! Can you believe that with all of my visits to DFCI that I have never seen another young adult on my floor? We didn't have much time to talk but we had enough time to marvel that more of us exist, groan about how people assume we must have breast cancer, and bond over our mutual admiration for our shared therapist.

The conference offered breakout sessions. I chose "Creative Mindfulness" in the morning which surprises none of you. Yes, of course I picked the creative endeavor that only grazed upon facing one's cancer. As the day progressed though, I felt myself growing quieter, more introspective. I found myself wishing I had time to stay for the session on discovering/owning/building your identity. I need to be more of a participant in the cancer part of my world. Right now, I feel like I'm living two separate lives and not successfully. I'm giving maybe 50% of myself to everything - work, friends, Mike, anything I like. I'm spending so much energy on not thinking about my disease or dying that I'm not really living. It isn't satisfying.

I'm not the same. Yes, my core is the same and I still love high fives and I'm just damn likable. But I can't stay the same. The August 2014 cancer patient me is not the same as the April 7 cancer patient me. It was sobering to realize that I belong in this other world. This world of stolen dreams, hopeful smiles, and secret tears.

I'm not ready for this. 

But in the meantime, I'll go to chemo tomorrow and look forward to the next trip to the grocery store where Mike and I dance down the aisles. And because I don't want to leave you feeling sad for me, here's a totally apropos video that I have shared before and will share again!

 

Why yes, I would like some cheese with this whine.

I don't want to go to chemo tomorrow. My mom's in town - I'd rather go shopping and to a movie and have fun. Instead she will watch me get pumped full of poison, serve me all food and drink because I just can't, and stay strong, doing her best to mask how much this hurts her. Mike will spend the weekend following me to the bathroom when I throw up, just in case I need him and he'll end the weekend by unplugging me from chemo, also keeping his feelings inside so I don't get more upset. I will sleep through most of the next four days. I will pop pills in between. Frustrated and annoyed but with no choice because I have to surrender to have hope of getting better. I hate this shit.

Cheese, please. 

My faux foe

For someone who has done this whole cancer thing before, these last few weeks have been a tough period of transition and thought and identity.

It took a full week after my first treatment before I felt like a person again. This was a vast contrast to the first time around when I worked full time through it all. On that first "real person" day I woke up, got ready for work, and while I was putting on my coat I thought "huh, I feel 98% today." Want to know what I did next? My hand slipped out of my coat and I punched myself in my port. OUCH. What the hell, Universe? 

That week of indescribable fatigue and hungover college student stomach made myself a stranger to me. I was barely able to fake my way through work.

--Hang on, I'm not supposed to be faking it this time. I'm trying to be real.--

At that point, I was ready to write this post with a different title. It would have been "My foe, Faux." I would have railed against faking my way through treatment. Shouted that I was going to be true to myself and not just be chipper to make my cancer easier for anyone. REVOLUTION! But then the next week happened.

The week between chemo side effects and my next treatment was great! I saw friends, I read princess bedtime stories with a feminist twist to my fave twisters, Mike and I heard a wonderful Beethoven's Fifth, I let my feet dip in a pool, Gretchen and her little legs hiked for over an hour with me - everything ordinary, all a little extraordinary. I recognized myself and that was awesome. I LIKE being positive. I LIKE making people happy. I LIKE people to know that I am strong, that I will fight, and that it's okay to be normal around me.

So here I am with two weeks worth of this one blog topic bouncing around and no idea what to do with it. I've since been through another treatment, spent 4 days sleeping off the poison, made my way back into work, and am sitting around 85% right now. Faux is no longer my foe, though. Are you confused? I was confused.

Everyone should have a therapist. One of the greatest benefits mine has offered is vocabulary. She can take my dollops of sentences, find the theme, and give it a name. Today's word of clarity? Authenticity. It's not about faking a chipper spirit; I respect myself, my loved ones, my co-workers, and my students too much to do that. It isn't about pretending this doesn't suck; I would drown holding on to that rock so firm in the riverbed of denial. Authenticity is about maintaining myself, the person you all know and like a lot, while I adapt to challenges, accept joys, and keep moving forward. Authenticity will wear sadness, fatigue, hope, happiness, and more. 

So here I am, reluctantly going through this again but resolutely doing it as Kara. 

Dear Port, I hate you.

I don't cry in public. When I was first diagnosed with cancer, I said something along the lines of "Okay. What's next?" The same thing happened this second time. My business mode just turns on and I wait until my next shower or solo car ride to let the tears flow. Except when it comes to the port-a-cath.

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