A Little Less Lost.

  So much has been happening in my life…and for once, most of it is good! I chose not to update these past few weeks because there wasn’t much going on really. I was going through the motions of treatment: weekly blood work. Weekly check ins. Treatment every three weeks. Rinse. Repeat.

I suppose it was after my second treatment of my study drug (it just got a name! Atezolizumab!) when I started to realize I was feeling different. I no longer wanted to just sit in bed in the dark. I actually had energy to burn! I wanted to get up and go out! I had no pain from my tumor area!! If you recall, the tumor site became so tender, I couldn’t even touch my abdominal area without tremendous pain. Did I burn that energy? Did I get up and go out??? NO, I did not. You see, I was still completely trapped by fear. I knew I felt better, but for how long? Did I want to go back into the world only to have to be hospitalized again? How much of myself could I invest in living only to have it taken away again. How long was I going to feel good? I needed confirmation that my trial drug was working before I had the confidence to “get back out there.”

Well, as most of you know by now, I got that confirmation just this week. My scan showed a reduction in not only my main tumor, but all of the nodules around it as well. Responding to this regiment was never a promise…only a hope. Now that hope has turned into reality. There was indeed a reason why I was feeling better…because I was actually improving from the inside out. What’s more: it seems that people who respond to this medicine tend to respond for quite a while. One man in the trial has been responding for three years! And he feels fantastic!

I’ve been gaining weight really quickly…I suppose that was another indicator of things going the right way. When I vacationed in Mexico for five days, I gained 8 pounds. How the hell did I do that?? Is that even possible? I guess it is. With all the food I’m eating and protein shakes I’m drinking, now seems like the perfect time to get back into the gym and tone up some. Looking like a cancer patient is SO last year.

I’m not really sure what to post is supposed to be about. I guess…hope. Hope is something I lost for a while. As my tumor continued to grow, it seemed to leech its nutrients from the hope I held onto. The pain increased…fatigue set in…emotions boiled over…hope diminished. 

But now, thanks to advances in cancer treatments, namely immunotherapy, my hope has grown once more. My hope wakes me up every morning with a good attitude and a hunger for life (and anything/everything that looks tasty…mmmm, bagels!). I no longer am afraid of looking into the future and wondering if I’ll be around. I’ve decided I will be.

I’m not naive though. I fully realize that the drugs I’m on now may not work forever. But they should work longer than chemo…and that may get me to the next great advancement. I just hope that by being a part of this trial, I am helping pave the way for other survivors to continue living the life they want. A life free from the pain, frustration, and debilitating side effects chemo offers. A life full of love, family, and happiness for however long. Maybe I am just a little naive. But if being naive means feeling like I do now…then I’m more than happy.

The next step.

  I haven’t written anything in quite a while. I apologize. My goal with this blog was to not only keep everyone informed, but to hopefully inspire others in their own battle…be it cancer or something else. But the results of my last CT scan put me in a really dark place. For those of you who don’t know, I was told my mesenteric tumor was back, or maybe that it never left ithe first place. The tumor is in the exact spot it used to be in, slightly larger, and has brought a few nodules with it. This probably explains all the pain I’ve been having for the last several weeks.

I pride myself in how well I’ve handled this situation so far, but the CT scan really scared me. I holed myself up in my dark living room and tried not to think of death every minute. I tried to twist my thoughts into something positive…but it just wasn’t working. All I wanted to do was cry. I wanted to cry and be cured. As if the tears were soaking up all the cancer in my body and pouring those malignant cells out of my body. As we all know, that’s not how this works. 

I needed time. Time to cry. Time to think. Time to pray. Time, time, time. But time isn’t a commodity I have right now. Fortunately, I have a team of Doctors who can think and digest things faster than I can. Within a day of having my CT scan results, my Doctor, Dr. Messersmith, had a plan for me. We would try to get me enrolled in a clinical trial with an PDL-1 inhibitor and Avastin. The inhibitor belongs to a newer class of medicine: immunotherapy. The goal is to take the brakes that the cancer placed on my immune system off. This medicine should allow my immune system to recognize the cancer and kill the tumor cells on its own. Avastin attacks the tumors blood supply and kills off newly formed blood vessels from the tumor. Ideally, this protocol will be a “one-two punch” to the cancer. Interestingly enough, this type of medicine (officially called MPDL3280A) has been shown to be effective on patients with a lot of mutations in their tumor and the characteristic of Micro-Sattelite Instability-High. Don’t ask me what that means…I’ve done a good job researching and I still don’t fully understand all of this. A hallmark trait of Lynch Syndrome is that the cancer is usually MSI-high and has way more mutations than normal. For example: sporadic colon cancer may only have 70 or so mutations….but with Lynch, I have over roughly 1200 mutations. This means my body is already recognizing some of the mutations and fighting them off. So, my T cells are already around my tumor waiting to attack…they just can’t right now. The goal is to get them all to attack at once now. Sadly, without the msi-high characteristic, and the lack of genetic mutations, the medicine is not effective for most colon cancer patients.
So once again, I am part of a small group of people whose curse may just be the thing that helps me out a little bit. Lucky me.

I would be lying if I said I wasn’t scared. But I’m also very excited about all of this. I cannot believe anything other than “this will work,” because it has to work. It has to work. It has to work. Please, God, this has to work.

I start the trial tomorrow morning around 7 am. I can’t help but feel a little pride in how I’ve chosen to deal with all of this. I really think I’ve taken a pretty daring path, utilizing as many cutting edge technologies as I can. Some friends have said I’m a pioneer of sorts…helping pave the path for those who come after me. That’s great…and I want to contribute to science, of course, but at the end of the day all I am trying to do is live as long as I can. And this trial seems to be the best way to do that for now. Some have questioned why I am taking such an unknown path as opposed to the standard of care that is still available to me. I don’t have a solid answer for that. But I feel drawn to this trial…or rather, I feel lead to this trial. So I am putting my faith in God and myself and my Doctor. This has to work.
I’ll try to do a better job about posting, as I have noticed this little blog gets quite a bit of love from you all. I appreciate that. I’ll keep fighting if you keep cheering from the sidelines. Thanks, friends.

Emotional Cancer.

  I have really thought long and hard about this post. How honest do I want to be? How do I write about my past without stepping on toes? But then I realized: life is too short not to be honest. 

I can’t tell you how many people I have met that claim their cancer was caused by some stressful part of their lives. They laugh as they tell me their ex husbands usually caused the disease. Sure, it’s funny now…but they are speaking their truth. Stress can be a major driving force in cancer. Perhaps that’s why so many of us warriors choose yoga and meditation as a second line of defense against our own cancers. If we can live in peace, maybe the aggressive cells in our bodies will be less aggressive? If we can let go of some part of our lives that may have been difficult, maybe the cancer will loosen it’s grip on our present lives? The minds of cancer warriors are so much more complex than those who don’t know the disease intimately.

Almost everyone who knows me knows my childhood was…odd. I never knew my biological father. My mother told me he ran out on us and wanted nothing to do with me. A couple years ago I was given letters from him that were kept in the family. All his letters disproved what my mother had force fed me for years. He wanted to be apart of my life. He begged her to allow visitation…and it was her who kept him away. She was young and was making, I’m sure, what she thought was the best decision for us both. And I can respect that. Sure, being raised on a lie that someone didn’t want me stung…but in the grand scheme of things, it really didn’t matter. It did bring peace to know that some man I can’t remember possibly thinks of me from time to time. Maybe he misses me. I’ll never know.

As I was raised, I never had a solid father figure. My mother couldn’t seem to find the man that treated her the way she deserved to be treated. She was a beautiful, good person. And she attracted men who would never be what she thought she wanted. Abusive marriages turned into ugly divorces. Ugly divorces turned into hatred. Hatred turned into substance abuse. Everything started to snowball and a once confident, strong, passionate woman became a shell of herself. Finding comfort not in me or my brother and sister (who were stripped from us both in her first divorce. Over a decade later I still don’t know anything about my siblings). Instead, she found comfort in bottles, random dates, late nights, early mornings, pills and anything else that made reality just a little more bearable.

I remember once in high school, she had become unhinged after a night (nights?) of heavy drinking and pill abuse. I left the house because in no way did I feel safe. Even at 17, I couldn’t comprehend exactly what was going on. What had I done to cause all this? I stayed with a friend for 2 nights before trying to get ahold of her. No response for days. I went home and everything was locked up…so my school called the police. A wellness check was performed after the police and I broke into the house. And there she was, pilled out and hung over in bed…not the woman I recognized, but some shadow. Some very angry shadow that kicked me out of the house with profanity filled threats. How dare I enter the house with police and school counselors?! How dare I check up on her? Who did I think I was?? I apparently had no right to be in the house I thought I lived in.

I think that was the day I changed. I was emancipated by the state of Texas shortly after and could officially do whatever I wanted.My grandmother took me in until I left for college…but something had switched inside of me at that point. The seed of anger had been planted, and for the next several years, that anger would just grow and grow.

Now, I need to state here: in no way do I blame my sickness on any of this. At all. My cancer is genetically driven….so while I got the genes from my mother,  my cancer was not caused by her actions or my feelings towards her. But that anger inside was palpable. And those closest to me knew it. I became incredibly self destructive: drugs, sex, alcohol…you name it. Yet, somehow, no one ever really knew how big of a mess I really was. I was able to hide it much in the way my mother had. I guess that’s something we had in common. I had troubled relationships one after the other….and the trouble was, well, me. Anger was eating me away, coaxing me into a life that was destined to kill me.
Fortunately, my story started looking up once I met my partner, Kenley. We met at a time in our lives where we both needed someone to save us. And that’s exactly what happened. We saved each other. He taught me how to let go of anger and make room for him. Make room for us. Make room for love. And that (after a few years of “self reconstruction”) is exactly what I did. I made room for all the wonderful things in life I had been too angry to even see.

My mother and I made some sort of peace when I was diagnosed. The conversation was short…in fact I think I interrupted her as she tried to talk about the past and said, “let’s just stop. I forgive you. Let’s move on.” And that was that. If we were going to hash out every wrong…we could potentially still be talking…almost a year later.

But my diagnoses makes me wish one thing. Well, a lot of things, but this one in particular: I wish I could have learned how to stop being so angry, earlier. It would have opened my eyes to so many opportunities that I continuously overlooked.  I love who I am now but maybe I would have loved myself earlier if I wasn’t so hurt and angry.

It’s unfortunate that it took cancer to make me realize all this…but some people will never learn that lesson. It’s a lesson I’m pretty sure my mother hasn’t learned yet, but there’s still time. She continues to battle her own demons, just as we all do. I pray one day she will find the peace we all seek. But only she can do that.

In the meantime, I’ll look back on my past in a different light. Not as a source of anger…but as a source of inspiration to do better. As a driving force to help others as they come to grips with their new “cancer reality.” 

Being angry has no place in my life anymore. Cancer allowed me a chance to break the chains of my past and move on. Maybe I won’t look back on my past in a different light. Maybe I just won’t look back at all. If you are constantly looking back, you might miss all the opportunities that are directly in front of you.

“This could be the last time…”

  
That phrase has been haunting me lately. It wasn’t until today that I “jokingly” said them out loud to two friends who couldn’t attend my birthday party.

“This could be my last birthday party! And it if is, imagine how bad you are going to feel next year!” 

There was some very uncomfortable laughing from us all. I wasn’t trying to guilt them, but in reality, this could be the last time any of us do, well, anything. My next vacation….could be my last. My birthday party? Could be my last. Hell, even a trip to the mailbox could be my last.

I use that phrase to motivate me. Sure, this birthday could be my last…but I could also have 20 more before having a tragic accident where the tv falls on me Final Destination style.

“This could be my last” really hit home as I volunteered at Stupid Cancer’s CancerCon, here in Denver (pictured above). The large room filled with an even larger crowd of young cancer warriors, their parents, their caregivers, and their best friends. One mother hugged me as she told me the story of her daughter. How she has a terminal diagnoses and the doctors told her she wouldn’t see age 12. But there she was, a little girl of 14 (almost 15!). 

“Fuck statistics” came out as a whisper. I was holding back tears. The mother hugged me, smiled, and said “Yes. And fuck cancer, too”

The strength of these children was palpable. You could see it in their smiles. You could see it in the way they carefully wrapped their bald heads. You could see the fire in their eyes. Brain tumors, colon cancer, breast lumps, swollen lyph nodes, no hair, tubes in their nose….none of that mattered at CancerCon. These people got to see that they are not alone…and that is as powerful as it is simple.

CancerCon isn’t just for children, it’s for all of us younger warriors to come together and connect. I met a man who was diagnosed with stage 4 colon cancer at age 30. It’s now in his lungs and the pain he carried daily could be felt by his weak handshake. The anger could be felt when he avoided eye contact. His loving wife (who I am pretty sure made him attend) was there digging for support. Digging for answers. Digging for more time

But at the end of the day…isn’t that what we are all doing? Trying our best to get by, hour by hour, second by second? We are all searching for answers, in our own ways, for our own life. Unfortunately, for most of us, it takes a life altering event to realize…the answers aren’t always there. In fact, more often than not, the answers are just replaced with more questions.

“This could be the last time…” used to scare me. It used to keep me up at night, sweating and holding back tears so I don’t wake my partner up. Now, I refuse to give power to some random words formed into a harmless sentence. If anything is going to be my last time doing it…then I’m going to have a blast doing it. 

And if it’s going to be your last time doing something…wouldn’t you want to have a smile on your face, surrounded by those that you love? Keep that in mind. 

You don’t have to have cancer to start fully living.

The journey thus far…

Now probably isn’t the time to write this, as I’m hooked to to my at-home chemo pump. The noise it makes every few minutes is a vile reminder of the cancer somewhere inside of me.

I figured it was time to document what has gone on since June of 2014. I won’t go into my  diagnoses or anything…but we can start at my first surgery: a right hemicolectomy with Dr. Santosh Nandi. Heck of a guy…a prodigy. Really. He graduated high school at 11 or something like that and was a resident Dr. in his early 20’s. “Doogie Howser” is what everyone kept saying. I already knew I was in great hands, so the pressure was slightly lifted. He said the he would go in, remove some of my colon and see what he could do about the tumor on my mesentery. 

Surgery lasted a few hours, I guess. I woke up feeling ok…and sort of accomplished! Like…”yes! We did it! The hard part is over!” Little did I know, dr. Nandi placed a sign at the nurse’s station, telling them I didn’t know the severity of my prognosis…and to please not mention it right now. Great.

Time for healing (3 weeks) and then chemo. I mentioned above I thought the hard part was over….oh how wrong I was. Chemo is exactly what you would expect with no way of ever preparing for it. It’s like being stuck on the loop of a rollercoaster you never wanted to be on. In short: it was (is!) terrible. I was told my chances of survival by my oncologist. 5-8% 5 year survival rate. Hm. Nice. I was told chemo would keep the cancer in check for now, but it probably wouldn’t shrink my mesenteric tumor enough to do anything about it. So I searched and searched and searched for something else to try. Vitamin d? Check. Tumeric? Check. Cannabidiol? Check. Google “cannabidiol (or CBD) and cancer” for more on that last one.

Well, by the grace of God, after 12 infusions of some of the worst chemicals known to man, my tumor had shrank enough for a new technology: the Nanoknife. In a nutshell, the nanoknife uses electrical currents delivered via probes to the tumor. The currents are pulsed at very specific intervals to crack open the tumor’s cells. This is called irreversible electroporation. The contents of the cell spill out and the cell cannot heal itself, so the body cleans up the mess, replaces the dead tissue with healthy tissue…and voila! No more tumor! This technology is so new, that when I read up on it, an article from the UK popped up from the end of 2013. Only 75 patients had it done in the UK up to the point. Great, so I’m basically a lab rat, right? Oh well, even some lab rats get lucky.

Dr. Eric Kortz performed my procedure. Generally, this is a non-invasive surgery, where you are put under, laparoscopically probed, then sent home the next day. Yeah right. Not for this lucky guy! Because of where my tumor was located, Dr. Kortz had to open me back up along my incision line from my previous surgery. Once he got in there, what was supposed to be an easy-in/easy-out surgery became something so much more. A piece of my small intestine and my gallbladder had become rather friendly with the tumor, and they became attached. So, a small intestinal resection and gallbladder removal was added to the “to do” list. Next? A stomach bypass, so that any potential tumor growth in my stomach wouldn’t prevent me from eating. Now? Let’s wrap his small intestine around the back of his stomach, just in case that tumor comes back…at least it won’t be touching anything. Oh! And looooook! A sattelite nodule to the right of his tumor! Let’s cut that out too!

Needless to say, I didn’t get to go home the next day. Or the next. Or the next.

About a week later I was free and clear! 

Recovering at home is always easier than at the hospital. While I missed my morphine button, I had my dogs and boyfriend. They are just as good as medicine. Kenley returned to work and everything seemed well and good. Until about two days later…a full NINE DAYS after surgery. I started bleeding….a lot. I’ll spare you the details…but the toilet looked like a murder scene. I noticed it was hard to walk, even falling at one point. Later, my neighbor told us he heard a crash and was curious as to what it was. It was me! Kenley got home, took one look at me and knew we had to get to the hospital. The only problem? I couldn’t sit up, much less walk. I felt like I was fading….fast.

The ambulance showed up. My heart beat was barely detectable and my blood pressure was waaaaay too low. So, off we went! I had never ridden in an ambulance before…this wasn’t really how I wanted my night to go.

I was immediately admitted and placed in ICU. That’s when the blood transfusions started. Blood, vitamin k, and plasma were injected into my body in hopes of clotting the bleeding. All in all, I had about 7 blood transfusions. Neat. Nothing was working. But, I regained strength and was able to move around some…or so I thought.

I went to use the restroom (side note: there is nothing more humiliating than having your poop, pee, and blood measured out by nurses everytime you use the bathroom) and kenley heard a loud thud. I had fallen sideways and hit my head on the wall. I can kind of remember it…feeling like the world was nothing but that static you see on old Tvs closing off my vision. Only the static wasn’t white, I remember it being bluish-black. 

Bam! I fell again. Hard. I was having a seizure. I don’t remember any if it, but kenley said he thought I was gone. Doctors and nurses pulling him away from me, screaming, out of the room, as I lay there, convulsing and bleeding. I don’t wish that sight on anybody. No one should see their loved ones like that. No one.

But I lived. And the night went on. Slowly. I stayed in ICU for a week. A clean MRI, blood scans (not sure of the real name…but it was totally uncomfortable being strapped to a table for two hours sandwiched between scanners), and a clean CT scan showed no cancer, but plenty of blood. A colonoscopy cleanse seemed to stop the bleeding. The doctors said they sometimes see that…weird, but it meant no surgery. Thank you, God.

So here we are. Sure, there were one or two more small hospital visits in between then and now. One visit warranted a ct scan…which still showed no cancer. Let’s keep that up, Stephen!  But what now? I’m on maintenance chemo right now, which is designed to keep the floating cancer cells in check. For now, I’m still infused every other Monday and sent home with the dreaded pump. Then we move to once a month. That can’t come soon enough! Then….who knows. 

That’s my story and I’m sticking to it. 

 

Homeless.

It’s really no secret that Denver has a pretty large homeless population. I mean, why wouldn’t we? It’s incredibly beautiful here, the weather is great (living on the streets in winter must be a very specific kind of Hell), and people are generally pretty nice and generous. Kenley and I are among those I would consider generous. Sure, we don’t open our wallet for every homeless person we see…no one could do that. But we try to help out when we can.

Since my diagnoses, my heart has opened even more. I find myself giving out more dollars than normal…even giving random homeless people my left overs when I have them. But the other day, something strange happened. I gave $5 to an especially sad looking man and we had a short conversation. He couldn’t believe I was “so kind” as to give him more than spare change. We exchanged some words while I was at the red light. In that short exchange, something in me moved.

The light turned green….I continued to drive…then immediately pulled over and wept. I do that a lot now. But why? Why was I crying, no, bawling, at a random act of kindness that I initiated? Why did this man affect me so much? Then I realized…it wasn’t the man that affected me….it was me.

I found myself wishing I could be homeless and cancer free. Living in the streets, digging through trash for food, begging for money. But here I am: living at home, eating if I can, and diagnosed with cancer. I think it sounds crazy that I am even comparing the two….but that’s what fear will do to you…it’ll make you think some of the craziest thoughts you’ve ever had. It’s not that I’m jealous of healthy people…

But I’m not not jealous, I suppose.

What no one prepares you for with cancer (as if you could ever prepare) is the mental battle you have daily with yourself. All the thoughts that run through your brain…you can’t stop them. And the more emotional you are, the louder your inner fear is. 

I think I do a pretty good job at keeping my head where it should be. But man, if only people knew how hard it really is. If people understood that when I’m not thinking of my health…I’m praying for my health. So that’s my new goal: somehow overcoming this daily fear. Fear of the unknown. Or even worse: fear of the known.

Fear that I’ll never be myself again. Fear that kenley will have to find someone else to explain how to work the tv. Fear that my dog could possibly love someone else as much as he loves me.

I won’t be paralyzed by fear anymore. I can’t be. 

Gosh, this post started off with homeless people and is ending on a totally different note. I guess I’m not feeling as poetic or as logical as I usually am. I’ll end on this note: 

  

On the corner of 28 and 29

Yup, it’s that time of year again…my birthday is right around the corner. April 29th has always been a day I’ve looked forward too…but this year feels different. And why shouldn’t it? Since last June, my entire life has been flipped upside down, inside out, and hung out to dry. Want to know a strange feeling? Getting ready to celebrate something you were positive you wouldn’t be around for. 

But I guess I wasn’t planning on making it to thanksgiving, to be honest. 

The day I found out I had cancer, I was all alone in a cold doctor’s office. I was afraid to drive home because I knew I would drive straight into a tree…or off a bridge. And yet, fast forward to now, and not only am I still alive…but in many ways, I’m thriving.

Sure, pain still keeps me down at times, but the sense of accomplishment I feel even after completing the most mundane tasks is pretty great. Kenley and I went to the mall yesterday…and guess what? I survived. Who would have thought that I would ever be patting myself on the back for “surviving” a trip to the mall.

But that’s my life now. Surviving. Thriving. Finding a way out of this mess. But, damn, this road sure is lonely. When cancer hits and leaves all the pieces for you to pick up….it really blows. Seeing my friends get married, having kids, getting promotions…it’s all a lot to process. How can you be truly happy for someone else when all you want is the simplicity of their life? I suppose that’s jealousy? Jealousy not of material things…but of the one thing we all want: health. Or life. I’m not sure which.

This all sounds so “down in the dumps.” I’m not, though, I swear. I’m looking forward to turning 29, and then 30…and one day, 68. Funnily enough, I have always said I thought 30 was going to be my “Golden Year,” where everything just clicked and I could live out a happy life.

Now I wonder what 30 will bring. Let’s just get past 29 first, I think.