The solo kidney

I can't believe its been almost a year since I wrote! I am probably the worst at consistently writing in blogs. I mean, I do have SEVERAL of them, but I don't keep up on a single one. Granted, life has been busy, as I've moved 3,000 miles away from home and am in the last stretch of my first semester of graduate school. Craziness!

With that being said, I haven't forgotten about my endeavors toward being an advocate in the fight against cancer. I try to keep up with latest info, I read articles all the time, I have an entire Pinterest board devoted to stupid cancer (not the organization, just cancer, cause it's stupid), I post facts on my facebook page regarding signs and symptoms, statistics, etc mostly with Kidney Cancer in general (although I'm on a facebook hiatus currently. Good thing to do every once and a while!) But I think most importantly of all, my advocacy has become a career goal. In fact, I wrote a blog about it a couple months ago on my advocacy blog (Don't think I mentioned that hear. I am so bad at this stuff!) You should check it out: Life With One Bean

So, the "inspiration" for blogging here again came from some recent events regarding my health that had me wondering. I've changed some things about my diet and am on a new path toward health but I wanted to make sure I really was doing it right this time. I was curious a few days ago what I could find regarding diet and health with one kidney.

/sidebar: After surgery, my doctor literally only said regarding life with one kidney was "lower your sodium intake." That was it. Ok?? And I was seeing a nutritionist, and while she was a very nice person, she didn't really know anything about living with one kidney and to be honest, probably wasn't qualified to handle my obesity problem. I took some general information she had given me but at that time it wasn't practical in my life. /endsidebar

I did some google searching in class the other day (done with everything in that class, so I'm starting to phone it in) and for the first time, I actually found stuff out. Yes, I've done the exact same searches before but always came away with nothing. Not sure why this time was different. Here is what I learned about living with one kidney:

• When you lose one kidney, your remaining kidney grows in size to accommodate. Because of your now enlarged kidney, you're at more of a risk for injury, especially with regards to contact sports. 
• A daily sodium intake should be between 1,500-2,000mg. Any higher causes hypertension, thicker blood and then makes your heart beat faster.
• Protein levels should be lower too in order to prevent the protein from leaking out of the blood stream into your urine. Once this happens, your body will retain the fluid in your abdomen and ankles. (Now I understand why my doctor was always checking my ankles at each appointment. He could have told me.)
• Urinalysis and blood levels should be checked yearly and kidney function (looking for the GFR efficiency) every few years.
• Lowering phosphorus or potassium or else it can lead to calcium deficiency and bone disease and irregular heart beat.
• And of course Diabetes is a major underlying factor for kidney failure. 

This is all interesting information. I've been eating extremely well for the last few weeks and have actually acheieved the water intake I've been striving for for years. (Don't know why drinking water has been so hard). Because of this, my body has been going through a transition because it is essentially detoxing! Part of the reason I got into the right mindframe was I could actually feel my body holding on to too much sodium and crap. Now that I have this info I can try to keep my sodium levels as close as possible to a healthy level. It's really hard. REALLY hard. Calories? Old news, that's easy. Sodium? Not so much. Basically if I eat more than 1 processed food item in a day, I come dangerously close to going over the limit. Whole foods is the way to go!

It's taken 2 years to understand it, but it's finally time to treat this one kidney RIGHT! I want to have a relationship with it that's healthy for the rest of my life. We're kind of attached to each other.

Hold on... WE SHOULD NAME IT! We named my other kidney and I got rid of Vlad because he was bad... but this little guy (big guy now..) is GOOD and needs a name. Suggestions??

Forgetting, cringing and unbelieving

I haven't really thought out a post but have been feeling compelled for some time to at least write something. It's difficult to explain how cancer takes up my thoughts all of the time and yet I seem to "forget" about it so frequently. It's especially difficult to handle the moments of "forgetfulness" when I have friends still really active in their fight. On a message board I'm a member of (not cancer related) every single day there is at least one thread made where someone is asking for prayers, good vibes and hugs because someone they love has been diagnosed, is struggling or has died from cancer. I swear, it is everyday. I can think of at least 3 that I read about today. It's moments like this that I chastise myself for not remembering all I've fought for and when I feel almost guilty that things were as easy as they were for me. Things could have been MUCH much worse. So much worse. I need to tell myself that I must never forget the lessons I learned along the way.

I am horrible at doing any type of research online. As good as Google or Bing may be, it's still hard to find exactly what I am looking for. I've been having quite a bit of pain associated with my rib on the left side. For those who don't remember, they had to remove a bit of a rib during my surgery in order to get in to where they needed. It was excruciating right after surgery and has been uncomfortable ever since. That was 14 months ago. (Whoa!! That flew by.) Sometimes, I feel like my rib is popping? I'm not sure. But my left arm has also still been super weak. I wish I could ask my doctor or surgeon about all this, but I'm not sure how to go about that. I'm nervous that talking to my doctor AT ALL will slam me with a bill.

In March, I had what I was pretty positive was a sinus infection and I knew I needed antibiotics. I went to the doctor (not my onc., just a regular ol' doctor) and he barely even looked at me and confirmed what I already knew. He prescribed me some meds, and I went on my way. Well, I got a bill a little while later saying I owed $220. I noticed my insurance was never billed. So, they billed the insurance and I just got my portion of the bill....... $190! What? They only paid for $30 of a routine doctors visit?

This is just the beginning of it all though. My scans back in March were roughly $7,000. After insurance, I still owe a little over $5,500. I can't believe it. I called SCCA and asked them what to do. The guy said I could make payments on it, but it has to be paid off within 24 months. That's AT MINIMUM $220 a month! Well, let's think about this for a minute. I have more scans in September, which won't be covered by insurance at all, so $7,000. So we're looking at $512ish dollars a month starting in September. And then my scans next March I'd have to add another on there, so basically a year from now, $732 a month.... and then the next one in September (again not covered at all by insurance), making the grand total a month, for basically forever: $1020 (at minimum) A MONTH.

This just doesn't seem right. I don't know what to do. I don't know how health insurance is for others or how it works at all, but this makes no sense to me. How am I supposed to afford that? There must be some kind of assistance out there. My student loans are extended well beyond two years to pay back, why not medical bills? Those are MUCH higher than education.

Just looking at my looming medical debt, I get really worried-especially since I want to get into more debt with grad school. I don't know.

So really, this is where I stand with cancer right now. It has ruined me financially. Awesome.....

How are you doing?

As I have talked with friends and acquaintances lately, I've seen a common thread in our discussions. They of course want to know "how I am doing."

This becomes a difficult answer for me. I have always been someone who is very open. And I like to be truthful. If someone asks, "how are you?" I can't just reply, "great!" if I am in fact feeling miserable. So, how am I to respond? Do I go into any detail that our greeting time will allow or do I shrug off the facts and seriously downplay how things are?

Most of the time, I just downplay everything. It seems that the majority of people want to hear only happy positive news, anyway.

As I have been coming more active in my role as an advocate, I find that I want to display the lingering affects of cancer, both physical and mental, in a truthful and informative light.

So, how am I, you ask?

According to recent tests and doctors visits: GREAT! Couldn't be happier about not seeing any signs of cancerous cells. Everything is still clear and A O.K.

Aside from that however, the tale is a bit more grim. Not depressing, but still not shiny happy.

Number one being that I have chemo brain. Boy do I have it! Chemo brain is a real thing. It's not an excuse to pull out the cancer card, but I certainly DO use it! My concentration and ability to multitask or have more than one train of thought going at once-gone. Does not exist. Sometimes I will just completely have a blank stare on my face trying to grasp a hold of the thread of a thought, desperately clinging to it as it wisps away.

With chemo brain, I also have lost a lot of memory. I completely forget about conversations or tasks until far far after the fact when having forgotten about it has now become a problem. It's really hard. I'm working on it. Also, a lot of non-pivotal moments from my own history have gone away to the wastelands as well... I can't remember a random night years ago or even someones face sometimes.

Another lingering affect from cancer would be my left side. I still get pangs of pain in my ribs where they had to remove some during my surgery. Coughing can still be painful. Not to mention, my left arm/shoulder is still really weak. I've been lifting weights and going to a gym for quite some time now, but my left side still can't carry that much weight. I'm lopsided. My right side didn't weaken as much as my left but it has recovered much stronger than the left. There are times when I have to use my right arm to lift up my left.

My hair is a more trivial concern, but it still is a lingering affect. It has been growing SO slowly. And now my hair is extra thick near the top but not on the ends. It makes me look like a mushroom head. Not to mention, this new hair is kinkier and coarser. It frizzes really easily. So, I have to brush my hair more frequently and longer just to smooth it out. Kind of a pain.

Aside from those physical things, there is a lot of mental repercussions from having had cancer.

Any lingering cough, twinge of back pain, oddly colored bodily fluid.... This starts messing with your brain. You think, "could this be?" You know you're most likely being irrational, but then again....

Not to mention that I've been struggling with my diet and exercise. I'm pretty positive by this point that my weight and diet were the cause of my cancer. It is so fundamentally important that I lose weight and eat healthy. However, this has been, and always has been, a giant struggle for me. I know a lot of stuff. I've studied and consulted over and over again on proper diet and exercise. And yet? I still can't get the hang of it. Curbing 27 years of bad habits is extremely hard. This weighs on me every day. Every cookie I eat, the back of my mind says, "cancer recurrence" and yet I still eat it....

Since I went to OMG!, I have conversed more with cancer survivors than ever before. I LOVE IT! It's so great feeling normal and having that support system. However, that also comes with consequences. I have friends who are being diagnosed with second cancers, who are still ongoing treatments and struggling with their own battles. It keeps possibilities of recurrence near the forefront of my brain more than anyone might think.

And to really top it all off, my stress from financial burdens, which will never end, ever, has gotten exponentially high. I will be having frequent tests for the rest of my life. Already the bills are piling up without me knowing a way to resolve it any time soon.

To end this long blog post, I just want to say that I hope this helps you understand how the cancer specific question of "how are you doing?" is no easy answer ever. But even among a high volume of ever increasing concern, I can say this: Life is good. I am on to bigger and better things and am striving every day to take control of my life to mold it into the experience I've always wanted to have.

A Voice

Hey, all. So, I did a little revising, updated the look of the blog. (Still trying to navigate the blog world with how to make it look exactly as I want).

Sorry I took such a long hiatus. I'm sure I've lost almost all of my readers. I think I went through a phase where "it was over." I felt like this blog had become not about my life travels, social events and turning points, but more about my journey with stupid cancer. After surgery, after my doctor said, "go home, see you in six months" I kind of took that for what it was. Forget about this journey and don't worry about a thing for another six months.

I was wrong.

While I couldn't forget what had happened to me, what I went through, it seemed to be talked about less and less. It isn't until now that I realize I wanted to talk about it MORE. Here I was, finally healthy, my mind clear and free from chemo and fatigue, and yet my voice seemed squelched. I'd jump at any moment to share my story and let someone know what I went through. It made for some unwise times of letting someone into that place in my heart that is so sacred to me who didn't respect it. I had to learn to safeguard the more intimate thoughts and events for those who mean most to me all the while relaying my story as often as I could.

I just went to an event in Las Vegas put on by Stupid Cancer Dot Org. The OMG! Summit for Young Adults. This summit was amazing. Not only did I get to enjoy a "real" Vegas experience (Clubbing, free drinks at the bar [diet coke for this lady], famous people, Chippendales, the night life), but I met 550 other young adult cancer survivors!! It was amazing to share 3 days with others who 'get it'. I heard so many stories, shared much laughter, anger, and tears with people who've been run through the mill. Yes, I had fun. But I also walked away from the classes, the forums, the mealtime mingling, with a new outlook, a drive. I came away feeling like I needed more.

Yes, I don't have cancer. Yes, MANY people have been through so much worse. (I realized how very 'lucky' I was during my treatment). But my journey isn't over. It's only been one year. There is still a high chance of recurrence. I have another kidney, after all. I still deal with late-affects from chemo, surgery and the cancer itself. I still have to muck through the mess that is health care, health insurance.

During the summit, Wendell Potter spoke to us. He was the keynote speaker. This was probably when I was my most angry. (Although, the 'macho' guys annoyed that us 'cancer patients' who were getting to cut in line for the club ahead of them made me upset too. Yeah, cause we chose to have cancer just to get into the club a few minutes earlier than you.) Wendell Potter used to work for the BIG health insurance companies. He had his hands in the politics and dirty work for a long time, until he came to realize how wrong it all was. He shared with us a story of a young girl who, because of her cancer diagnosis, needed a liver transplant. Her parents had insurance, they had the coverage for transplants, and the best news, they had a donor. Because of one person on an insurance committee, they denied her the liver. They deemed it not necessary. It was not profitable for the company. The parents fought. They got media involved, they wrote letters, they petitioned. Too late. Their daughter ended up dying because she didn't get the transplant.

Mr. Potter went on to talk about the corruption in the industry and immediate need for health care reform. I found myself wanting to stand up, put my hand in the air and shout "AMEN!" at the top of my lungs many times. I feel I was/am a victim to poor health care.

After the summit, I really felt like I need a plan. I needed to find out how I can do more for those young adults navigating the cancer world, for those friends and family of mine who need to know that they CAN get cancer and how they can look out for signs of it. So, I decided to revamp this blog. I also decided to start another blog. Click here. This is where I will post news articles, websites, information, data, and ways for others to know what cancer is all about and how you and I can take a stand up to it.

I'm back. I'm here to stay. I have a voice. Cancer may have taken a kidney, but it didn't take me. I am bringing awareness by bringing discussion.

Please, spread the word to your friends. Everyone needs to get informed.

Hair-ography.

I've been trying and trying and trying to come up with some type of topic for my next post. It has been too long since I made one. Not much is going on these days. My health is AWESOME and I'm still not working or doing anything. Just enjoying myself really. So, I thought perhaps I'll share the story of my hair. When I was born, I was a total toehead.

 (This is the youngest picture I have of myself on my computer. Hmmm perhaps I should change that)

And all growing up, I just had my super long blonde hair. That's just how it was.

 I never did anything with it. Not even in high school. I just wasn't that type of person--heck I didn't even blow dry it. Ugh horrible. During college there was a time that I was bored, so I chopped it all off.

I had never had my hair that short, and it was totally different. I enjoyed it, for a time. Then I realized I chopped it all off during winter, in REXBURG IDAHO. Not very smart. Very cold. Then another time in college, I was needing change, so I had my friend dye my hair brown. It was box from the store and he was no hair dresser but had dyed his hair before, so why not!

It was different, but it really didn't last long. It washed out pretty fast. Good! I wasn't so sure I had wanted dyed hair anymore after I did it. Then, just last summer, I was having my BEST hair days. My hair was awesome. I loved the glow it had and it was so super blonde and almost white. I like that.

I'm no picture editor, so that looks a little weird, but I still loved my hair. And then................ CHEMO. UGH. GRRR Frustration. I wasn't sure what to expect when I started my drugs, but at first it seemed like nothing was happening. And then about 2-3 months into taking those drugs, I started noticing it. My hair would get knots in it really easily. There were strands all over my pillow and just everywhere in the house. Showering was the worst. I remember after my surgery it got really bad. It basically looked like my cat had come to curl up in the shower with me. I was not happy. I wasn't supposed to lose my hair! No one told me those drugs would be doing that. It had crossed my mind when I first heard the words "cancer" but then it was never talked about. Now, I didn't lose all my hair. It just really thinned out. It got to a point where it was gross and stringy.

What you see is all my hair. Nothing is behind my shoulders.It actually looks a bit fuller here than it really was. So, I chopped it off.

You can tell my scalp was pretty bare. Well, now it is growing back in well. It's still pretty thin and I have baby hairs EVERYWHERE. My hair sticks up and flys wherever it wants. You've seen babies with mohawks and their moms just cant do anything about it. Thats kinda what I'm experiencing. Well, Since my hair fell out it is growing back in darker. :( boooo, i liked my super blonde. So, this last week I decided to just do it and dye my hair again. I even got it cut just a little bit more.

It's still growing on me, but this picture helped me to see that it really isn't all that bad. Besides, now i look even more like my dads side of the family. I know, you really wanted to hear about my hair. But it has been going through lots of changes recently. Just be glad I haven't told you the story of my cats..... That one is long. ;)

Live Your Life As A Theme Park

The last 9 months have been a rollercoaster ride. It's one of those rickety old ones that kind of scare the crap out of you, but you muster some courage and decide to ride it anyway. It goes slow, possibly breaks down a couple of times. It manages to whip you around enough to encourage your stomach to give up its contents. By the end of the ups and downs, you hope you never have to get on there again, it didn't seem to work very well, and to be honest it wasn't much fun.

But now, I'm off to see the rest of the theme park. There are lots of rides and sights to see. Tons are grabbing my attention. There are so many that I've never experienced before, and many others that I can't wait to feel the thrill of yet again. I've missed some of those old classics. There are some characters who I still haven't managed to catch a glimpse of and others who are new and I've never seen before.

One thing interesting about all of this, is the drastic deterioration and destruction and then construction and now renovation of my body. Since it's been 3 months since I had my surgery, I've been trying to get it to a place where it is completely functional and that I feel pleased about. I haven't been able to do much at all, and before that just didn't do much at all.

Part of me is hesitant to do certain physical activities. My left arm is still weak and my scar twinges a bit here and there. Yesterday, I proved things to myself, and probably to others! I went to the Ape Caves. They are a 13,042 feet lava tube near Mt. St. Helens. This isn't some simple hike. We had to bring headlamps, or just flashlights, to be able see at all. The floor is most definitely not flat, and there are rocks all over that you are constantly climbing over. There was one place that we had to climb up a flat surface of rock-- it really only had one foothold. I wouldn't have been able to get up it were it not for my friend Eric and some other guy to pull me up.

This picture I took at one point where we had a skylight in the cave. You wouldn't want to climb up it-its actually not allowed. But it was neat to have a moment of light and to see all the moss and stuff growing in there. The cave is year round about 42 degrees. But it was super misty in there. It was constantly dripping water on us. All of the run off from the melting snow was coming through all the cracks. I swear we saw two under ground lakes. My shoes got soaked several times. There were a few times that I would tell myself I was tired and wanted to quit, but I kept going. After a few minutes, it wouldn't be as bad as before.

Here is one look inside the cave.

This is the exit that we eventually made our way out of. A whole troop of people were standing outside of it waiting to go in when we came out. This opening is actually not quite at the end, a couple hundred feet of cave is past this. We went down there and I swear I was in the Chamber of Secrets. Remember when Harry and Ron went down the first time to rescue Ginny? The rocks came caving in and Ron and Harry were separated on either side. It definitely felt like that. At the very end of the cave, it was actually quite open. It had a cathedral ceiling and a little place to sit. I didn't want to though because a pile of Bat guana was already sitting there.

I'm still quite sore today, but I'm ok! I'm still functional and I'm excited to continue to do such things in the future. I'd love to find more strenuous hikes to explore, and I think I'm finally up for learning how to rock wall climb. The harnesses have always made me freak out. The views from yesterday, as well as the company I was keeping, was so refreshing after staring the same few walls for so many months.

Here I am in front of Mt. St. Helens. A cloud was covering the top of it the whole time, but it still was pretty crazy beautiful.

I'm excited about this brand new era in my life and can't wait to make even more adventures. Life is beautiful. In fact, sometimes it's DOUBLY beautiful.

Cancer, interesting.

It's interesting, cancer. One day you know nothing about it, except that there are people that have it, races for cures, and lots of research into finding out more. The next day, you find out you have it.

But guess what? You still know nothing! Everything is vague, you don't know if you should be scared or just be patient to see just how serious everything is before you decide to worry. Nope-you still have no clue about when that should be. So, you go to doctors appointments, you do as they say and smile and nod at crazy words being thrown around. The next thing you know, everyone is asking about you, or asking how you are doing. How should I know? My doctor doesn't even know. Am I supposed to be scared yet? At all?

People are coming out of the wood-works, others are disappearing. How do you deal with this social disturbance? You start feeling funny because you're repeating yourself over and over, saying half truths, giving reassurance--for their sake, or your own?

You feel good for a little while, because you're doing lazy stuff--playing on the computer, watching movies and tv a lot, reading books. Everyone is doing things for you. Making you meals, doing all the chores, chauffering you around. It's a prideful high. But then it gets old.

You realize your independence is gone. The others are doing this for you, yes because they love you, but also because you can't do it yourself. Well, why the heck not? So, you get up, try to make a meal, simple, but you're trying it yourself. Ope, no luck. You have to sit down halfway through because you're worn out and you just might lose your lunch before even getting to eat it. Alright, you muster more strength to finish and you sit down to eat, completely wiped out. Aha! But I've made myself food. I can still do something for myself. Eat that, fools. Ugh. This smells weird. Blech. Doesn't even taste great. Meh. At least it's something to eat. Uh-oh, I'm about to revisit it.


You find the little things to do, like laundry. Maybe you don't fold it and put it away, you don't even hang it up. But, it's nice to have clean clothes available. All you have to do it put it in the wash and hit start. That's easy. Crud, forgot about lifting the laundry basket. Hmmmm, I'll try kicking it across the floor with my foot. My bedroom to the washer isn't that far. Uergh. I'm retarded. How is lifting some clothes a few inches into the wash making me sweat? Finally, it is done. I'll go sit on the couch for a while as it washes. The next thing you know, it's been three hours. You think, oh shoot, I need to switch that over to the dryer. But I am not ready to get up, I feel exhausted. In a little bit, I'll do it. Whoops, it's been an hour. K, I can finally do it. So, you get up, switch it over. The  next day, you realize someone put your clothes in your basket and back in your room because they had to wash clothes. Dang, part of that independence is gone again. What's the point even? Clean clothes? The only place I go is doctors appointments. So, you let it all pile up again for a really long time.

You start missing your old life. All of the things you used to enjoy, the people you used to see and talk to. So you make plans and figure out what things you can do. The only problem is, you forget a few minutes later that you had thought of some things. Perhaps you should have written it down. Wait, write what down? What was I thinking about? Mmmm, probably sleep. Yeah I should sleep. That sounds good.

When you wake up, it takes about a half hour for your brain to be full aware that it is capable of thinking coherent things, sort of. What is life about? Why are you only observing it and it seems others are out living it? Oh yeah, cancer. Huh, strange, I forgot I had cancer. What does that mean though? Why should cancer make me stop living my life? Hmmmm I'm bored, I should go make something to eat....wait, need to make a trip to the bathroom first, again....

Cancer, it's an interesting thing.