Nerves, nerves, nerves.

Nerves! Who needs 'em right?

Those things aren't important... are they?

Well, apparently they friggen are. Super important. Especially the ones in your feet and legs.

And guess what? Having six rounds of five days of straight chemotherapy drugs (five drugs to be exact) being pumped into your jugular vein is going fuck up your nerves.

Yeah, it got rid of the cancer. And that's peachy. It really is. I'm grateful to be alive. I'm grateful to be in remission.

But it sucks to know that I'm going to be living with all these long term issues because of it.

Doctors have a lovely little term for this nerve pain/damage/numbness. Let's get technical here.

The nerves that are the farthest away from your brain are called peripheral nerves. Chemo hates those nerves. Like really hates it. It walks up and punches them in the throat.

The fancy term for this nerve damage is chemotherapy-induced peripheral neuropathy.

And let me tell you, it's pure hell. It's worse in the morning and at night. I wake up in the morning and it feels like my feet- especially in my ankles- are in a vice grip. The ache is so deep it feels like my bones are going to shatter. I can barely walk and I have to hobble my way around the house until it finally lessens up. That's just the morning.

Now the rest of the day it's not too bad until evening unless I have to do some serious walking. That's when the pain begins in earnest. It travels up from my feet into my lower calves and my knees. It's so hard to describe nerve pain. It's different than muscle pain. It's deeper and much more shattering.

So that being said, this whole thing has me pretty grumpy. I'm going to be seeing the doctor again for this ASAP because it appears to be getting worse instead of better. There's no known medicine that really works (from what I've been told) for it but I find that a lame answer. There's gotta be something.

Survivorship is a bittersweet thing isn't it? We're so lucky to be alive. But we're left with this shaken up life that we did not have before. How do you go back to how you were before when you find yourself experiencing all these physical disabilities that you have no idea how to cope with? How do you communicate this to others? Especially in the work place?

Invisible disabilities are the worst.

The only plus side is I get a three year handicap tag for my pain and suffering. This wasn't a big deal in Wisconsin but in a place like Fort Collins this is HUGE. Parking here is a nightmare. Hence why everyone rides bikes. So thankfully, we get the hookup everywhere we go. If we decide to go for lunch in Old Town we can literally park on the same block as where we're going. Which is just down right rare in this area. It definitely comes in handy on campus too- it's an absolute lifesaver. So there's one perk!

In other, less grumpy news, I have a hair update for you!. It's coming in fast. At this point I'm pretty much done with wigs. They're ten times more uncomfortable than they were without any growing hair and I frankly don't give a damn anymore. I really don't. I've navigated the hard task of deciding whether to inform my new work and confided in a few of my colleagues and supervisors. Everyone has been real neat about it so far. No big surprise really- us English folks are empathetic folks. Most of the time. I don't plan on telling my students- I just don't think that conversation needs to happen in the classroom. Especially when I'm overwhelming them with information in their freshman year. I might just show up without a wig one day and say, "Woah! I got a haircut!" and that's that.

All the little things you never thought you'd have to deal with. It's stressful.

But viola! Check out my hairs! At the point of this picture we're officially 12.5 weeks out from my last chemotherapy treatment.

We're getting there!!

New Oncologist, Survivor Musings, and More Hair Growth.... This is a lengthy one folks.

One part of our awesome and exciting move to Colorado is less than exciting and awesome... at least because I don't want to deal with it.

Setting up with a new oncologist and cancer clinic here in Fort Collins.

That's not anything personal. At this point I would love to never see a cancer center again. I'm sure that's a normal response.

BUT

I love my new oncologist. She's funny, compassionate, and smart as hell. I decided to go though the giant umbrella of the University of Colorado Health. One big advantage of living in a big town: big time resources, baby. The biggest upside to that? Having an oncologist that ONLY works with patients with your cancer. Specialists for us special folks. My doctor only works with the blood cancer people.

POP QUIZ. Why is lymphoma considered a blood cancer?

I'm sure you're dying to know so I'll tell you. The lymph nodes are part of the lymphatic system which is a network of dudes that are a crucial part of the immune system because they carry fluid (such a gross term) that contains your white BLOOD cells. 

Ahhhhh. Makes sense now doesn't it? So basically, in my case, my thymus (strange little organ that no one has ever heard of that's part of that lymphatic system) decided it wanted to grow a big ole tumor. Since it sprung from my lymph nodes which are essential to white blood cell traveling (is that a real science term?) my cancer was a blood cancer. And because the type of tumor cells were b-cell and the thymus is in the chest its fancy name is Primary Mediastinal (fancy word for chest) Large (because that bastard tumor was huge) B-Cell Non-Hodgkins Lymphoma.

Anyways.

And the clinic itself was gigantic. My nurse navigator is great. She was on the ball and called me before my appointment to go over some of my records. She sat through the appointment with me and took notes and made helpful suggestions. The resources there are kick ass. They have a Survivorship Clinic that will be calling me next week to set up a day of physical therapy, exercise, and a general 'get well' plan to recover myself from that nasty ball busting chemo I had.There's an exercise program to help fatigue which is nice. Tons of classes, support groups, and meditation learning as well. I might hit up one of the support groups but I'm not sure yet if I feel like 'connecting' with anyone or if I'll go with my traditional route of repressing my emotions and then oversharing on my blog later on.

So here is my plan going forward: I'm going to meet with my oncologist every three months for blood work. In my blood they're going to be checking my overall health, blood cell counts, and looking for cancer markers. Basically your blood can do freaky things if your cancer comes back so they'll be watching for that. Every six months I'll have a CAT scan of my entire lymphatic system. So not just the chest area but all those stinking lymph nodes. Seems like a good plan and I'm just thrilled that I only need a scan every six months as opposed to three. I hate scans. PTSD anyone? Scanxiety is a thing. 

We covered my after chemo issues and she confirmed my suspicions that all the extreme ankle, foot, and leg pain I get on a daily basis (usually worse at morning and night) is caused by neuropathy. Basically, my nerves are all screwed up from the chemo. It's a form of nerve damage that often shows up in your hands and feet the most. Solution? Not one thing except that annoying 'it will get better with time' answer. 

Seriously, I wish doctors would just give me a cookie right before they say that to me. It would soften the blow and by now I'd have enough cookies to fill the void of grumpyness.

But it's better than her saying it's permanent. Because my extensive Googling has shown me a lot of websites that say that can be the case. Please, please, please Taco Overlord.... I pray that it won't be.

She followed up that lovely bit of advice (I do like her, I swear- it's just a common thing all doctors say that drive me bananas) with the information that.... Hey, it's going to take at least a year before your body returns to normal.

What was that now? A year? I got shit to do.

I must remind myself that being alive is nice. I'd like to keep doing it. And I'm thankful I am, achy legs, fatigue, hot flashes, and all. 

Oh well, the aches and pains are the worst. The menopause I can deal with. The hot flashes are miserable, the hormones suck, and the weight gain that won't go away is lame. But that's included in her 'one year' guess so we'll see. 

Menopause at age 28. No wonder my blog is based on a grumpy cat because that makes me pretty damn grumpy.

And hungry for more cookies. Seriously doctors, invest in a cookie jar.

So she ordered some blood work that day. My red blood cells are lingering right on the borderline of the lowest 'standard' range. My white blood cells still haven't crawled back to normal so I betcha that's causing some of my fatigue.

And she did an x-ray. Shoot, didn't even have grumpy cat with me. It did give me an opportunity to take a selfie for the blog without anyone giving me strange looks. 

My clinic and hospital back home were well acquainted with my picture taking and selfies. Nothing says 'blogger' than me shrieking 'WAIT! Bring me that bag of blood so I can get a picture of it!'.... For the blog... seriously, it's not weird. These folks will get used to it. 

So overall, I'm very impressed with the whole place. The nurses, the doctors, the lab techs, everything. Even their gowns are awesome! Because they're not gowns! They gave you scrubs to wear! 

I mean, seriously, check that out! Stylish, comfy scrubs for all your hospital needs. 

That's something all hospitals need to implement. I would get down right aggressive if anyone at the hospitals back home tried to force me into a gown.

(Right Aurora nurses? Hope you're still reading, miss you all!)

But I consented to these because they were pretty sweet. 

Plus they don't need to know how big of a pain in the ass I can be yet. This is all just gonna be in and out procedures anyways!

So my x-ray came back good. So now I am free until November until my next round of blood work and then CAT scan. Wooo..... not. But that's a ways off. At least it's not too close to Christmas.

That all being said, I seriously miss all the nurses back at Aurora. They were the best support system during that horrific battle. Especially with that last hospital stay and the last round of chemo- I was ready to give up (but you guys know I never would, not really) and they held me up when I felt I couldn't much longer. No matter how fancy pants this new place is, it's not the clinic that supported me every step of the way. Miss you ladies.

Honestly, one of the toughest things about being a survivor is realizing once they say REMISSION you have the glee, the happiness, the emotional uphill roller coaster and once all that ends.... you still have to deal with this crap. Recovering from chemo. Knowing that you may now face permanent changes such as a higher risk for heart issues, other cancers, long term neuropathy, infertility, and the shadow sword of cancer recurrence hanging over you for five years.

But during all of that, your support system is ripped out from under your feet. You no longer go to the clinic to get covered in warm blankets and fed soup. You no longer have a daily nurse (whether in the clinic or in the hospital) you see that knows in an instant what you're going through. Maybe not because she (or he) has gone through it but because they've seen it time and time and time again.

Your support system lessens and lessens. And that's okay. Because some days you want to pretend it never happened. Never talk about it again. Never think about it. I feel good those days so who needs a support system when there's nothing medical to support? Repress, repress, repress.

But then on days when my legs and feet hurt, I'm tired, my face is melting from the latest hot flash, and I feel like crying over my lost shoe... I feel more alone than I did when I had cancer. And that sucks. 

But wait, I don't want anyone to talk about it, right? Maybe I'm sending mixed signals.

I'll write a blog on all that later because that's a SUPER common trend I've heard from other survivors. That how when their support system vanishes (you're in remission, right? you don't need one anymore!) they emotionally sink.

Because really.. you're not back to normal yet. And on the days you can tell you're not back to normal- you're plain pissed off. Or sad. Or mopey. Or hungry. (Cookies?) And you still wish you had the same support you had during cancer to help with that.

Hmmmm, things to think about here.

But on a happier note:

Two weeks since my last image of my egg, I present you with a picture of what my head looks like 11 weeks after chemo.................

Drumroll......

HAIR HAIR HAIR HAIR HAIR HAIR!!!

Lions, mountains, moose, oh my!

I bet you all thought I went and fell off a mountain didn't you? Or was eaten by a mountain lion? Perhaps fell in the river?

Nah, we're all good.

Sadly, my cancer survivor trip has been postponed until later this year. That was super disappointing BUT I still went up to the mountains for a nice family weekend instead. We did some hiking and we went up to the top of Rocky Mountain National Park.

So since the kids were in tow it wasn't exactly the meditative experience the retreat was supposed to be but it was still a blast.

I successfully completed my first Colorado mountain hike. Uphill baby! Physically I felt pretty winded at first. One thing my oncologist warned me about in the mountains was my low red blood cell count which as you may know helps the oxygen flow in your blood stream. Less red blood cells means less oxygen. Normally not a big deal until you're up in the mountains in high altitude with thinner oxygen. Luckily, didn't have any issues with that on the hike. Going uphill I was a bit wheezy but once it leveled out my lungs adjusted and I powered through.

Honestly, I probably handled it better than I would have when I was a smoker before any of this cancer crap happened. So there's that to consider. We didn't go super far in since we had the kids and there were recent mountain lion sightings in the area.

Yeah baby, mountain lions.

Fighting a mountain lion is one experience I hope to never have. Yes, fighting one. Because the advice is to fight back if you're attacked. Well cool. I'll get right on that. I did see a moose though! Like literally, right next to us in the dark. Moose are freaky creatures. You'd think they'd be all cute but I didn't like the way it was looking at us.

I love hiking now. That was seriously such an awesome experience. It was just wonderful to feel physically strong again. The doctors have told me exercise is key to bouncing back and I'm jumping on that bandwagon as soon as I can. I want to get my body back into shape and make it powerful. I want to be able to handle a five mile hike without being winded. I want to be strong enough to handle rafting d\own the Poudre river. I have a list of physical goals to complete now. The further you hike, the prettier the views are. What could be better motivation than that?

We also took a stroll up Trail Ridge road (give it a Google, WI folks) which has an elevation of up in the 12,000 range. We wandered around the top of Forest Canyon and that was awesome. We were so high up that trees don't even grow because there's so little oxygen. And that's when I started to feel the altitude a little bit. Felt pretty dizzy when we got back in the car. But who knows if that's just a normal response to altitude for someone who's not used to it or if it's because of the chemo.

Top of the World: Forest Canyon Overlook

That's the tricky thing these days. Not knowing what to blame on the chemo or what is a natural ache or issue.

So I didn't fight a mountain lion. But I did survive the mountain! My aching after-chemo legs carried my happy butt up that mountain and the more I hiked the better I felt. It was liberating to feel strength in my body again after months of feeling as weak as a kitten.

So if you all remember back in February I made the declaration that I would conquer the snowbank of cancer and win....

Which I illustrated very nicely by climbing a snowbank.

We never have a shortage of snowbanks during WI wintertime.

And I certainly conquered the cancer. But at the time I think I was drastically underestimating the battle I was about to face.

Looking back on things I think my positive attitude was astounding but I think so much of that was partly because I had no real clue the hell I was going to face. I don't say that now to dismiss my positive outlook but to further illustrate the way a cancer fight knocks you off your feet

Even if you manage to hang on by your toes.

So really the more I think about it, I didn't really conquer the snowbank of cancer. It was much more than a snowbank. The hospital stays, the pain, the fear, and the toll it took on my family was much more immense than one snowbank.

In reality I conquered a mountain.