AWARENESS

6/52 Project Zen Cancer Awareness Day

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If I received money every time someone asked me why we don’t have a cure for cancer yet, I’d have enough money to run away to Italy. Or, at the very least, pay off some credit card debt. I usually just shake my head and answer with “I don’t know” because it is the easiest/laziest answer I can give to someone. I don’t think many people realize that the term ‘cancer’ is a very simplified word to describe a whole giant group of diseases. The thing that groups these diseases together is a common root cause: abnormal cell growth. That abnormal cell growth can be caused by genetics, viruses, chemicals, obesity, autoimmune disorders, hormones, and physical agents like asbestos or BPA. Any one of those things can set off a chain reaction in one cell that leads to a mutation in an oncogene that can have various results. A daughter cell inherits the messed up gene and then goes hay wire The mutated gene causes the cell signal other cells. The gene mutation can make that cell start dividing. A mutation any where in the oncogene can lead to multiple situations. Basically, it’s a molecular level choose your own adventure in cancer. Cancer is fucking complicated.

That’s why we don’t have a cure for cancer.

Yesterday, Josephine and I were finishing up watching CBS Sunday morning and we’d reached the part where they show this week’s calendar. That’s how I know that today is Cancer Awareness Day. When it was announced on TV I thought “great! I’ll just add that to the list of things I’m totally aware of this week.” Like for instance, how Chris would be forty eight on Wednesday. The day after Chris’s very last birthday, I spent the whole day crying. The. Entire. Day. I just cried and cried and cried and cried. By the time Chris actually did die, two days later, I was a complete shell of a human being. The nurse told me Chris had passed and I looked at the hospice care worker and said “what do I do now?” She thought I was asking about who comes and takes the body and all of that other stuff you have to take care of when someone dies. I kind of meant that, but I was really curious about what exactly I was going to do now, in general, for the rest of my life. These are the thoughts the I am very much aware of every year during this particular week in February.

The thing that I am usually least aware of during this week is what killed Chris. Abnormal cell growth formed a tumor on Chris’s liver right around the junction of where the left and right hepatic duct meet up. This meant that he was no longer able to excrete liver wastes and bile, which aids in digestion. Still to this day, I have a hard time admitting that cancer was the cause of Chris’s death. It just happened way too fast and without any warnings for me to be able to admit that. Also, at the end of the day, no one was really able to tell us what had caused his cancer. They found a small amount of cancer cells in esophagus and one specialist tried to link the tumor to those. They also talked about hepatitis B. If you read this article on Viruses and Human Cancer in the Yale Journal of Biology and Medicine, then the whole hep B theory makes the most sense. Don’t worry. I was vaccinated for hep B and C ages ago. Chris’s vaccination history was a bit sketchy. No one could say for sure what vaccines he’d had over the years.

Viruses are the cause of around fifteen percent of cancers. Epstein Barr, hepatitis B and C, human papilloma virus (HPV), human immunodeficiency virus (HIV). The hepatitis viruses and HPV are about the only ones with vaccines. They can all be prevented by using safe sex and safe needle practices. So maybe instead of focusing so much awareness on finding a cure for cancer, maybe we should be doing more to prevent the cancers we know how to prevent.

POST TRAUMATIC

Friday, I had an opportunity to hear a Nobel Laureate speak. I was super excited in my usual Lisa Simpson nerd girl kind of way, but I got held up and by the time I made it to the auditorium there was no room in the inn. They sent me over to the video conference room where I was able to snag a seat. This information will be important later, I swear. Any way...Nobel Laureate. We had to sit through three introductions before he got up to speak. One introduction was from the Governor of Kansas. I don't remember his words because by the third time he'd said the word "cancer", I'd started to hear this roaring sound in my ears. I must have physically looked not quite right because my friend Jeff looked at me and mouthed an "are you alright?" at me. I'm pretty sure I said that I was fine (that's what I say), but as the Nobel Laureate started speaking and it became obvious that this was not going to be a scientific presentation, but a "people with cancer, living with cancer, treating people with cancer, cancer, cancer, cancer" talk, I realized that I was not fine (longest sentence ever). As he was speaking I felt myself holding my breath. If you could have looked inside me, you would have seen a miniature of me trapped in one of those glass terrarium jars clawing desperately at the glass to get out. And so that's what I did. I calmly stood and discretely exited the room. If I had been in the auditorium, I would not have been able to do that and I would have had to sit there and suffocate. Being in the video conference room made it easier to slip out unnoticed so no one could see the tears welling up. As grief attacks go, this one started out to be not too bad. I had myself together by the time I made it up the four flights of stairs to my desk. But then someone asked about the speaker and I opened my mouth to reply and all that came out was a curse bubble. I turned on my heal and headed straight to my usual ladies room stall. Once I got to my safe zone, I allowed the racking sobs to take over, then I cleaned myself and went home. That's how a grief attack works.

Chris started to not feel so great right around this time last year. I knew that as these "anniversaries" came around that I'd have some flash back issues. Of course now I'm thinking about what if we'd gotten his diagnosis as soon as he started to feel bad. When people ask me how Chris died, I hardly ever say "cancer", because he didn't have the cancer that we are all used to people getting. He didn't have that kind that you fight off and on for years, that kind that sucks, but still lets you live a half way decent life. He had the kind that kills you dead fast. He had the Raid of cancer. What if we'd known Chris had cancer this time last year? Would he still be dead by February? What if? What if? What if?

The whole process has caused a bit of trauma and even though I've healed up well for the most part, sometimes something will trigger an ache. Like the weather and arthritis. In this case the weather is someone droning on and on about cancer victims and survival rates.

ADDING TO THE PROTOCOL

Someone contacted me yesterday to see how I was doing. She said I'd been too quiet on the internet. I really haven't had much to say and even now I'm not sure. I had a weekend full of family and friends. Full of laughter and love and even a few tears. Now I'm alone, adjusting. It's odd and surreal. I feel pretty proud of myself. I got up this morning and showered. I made a lovely breakfast burrito. I've answered emails and messages. I've cleaned out the medicine cabinet and I've filled three carpenter bags with his clothes. Things I've kept: one Star Wars T-shirt, two sweaters, two flannel shirts, and one army jacket. Oh yeah, and two pairs of smart wool socks. I feel like this is reasonable. It's amazing the aftermath of death. All the things that get left behind. All the stuff. His office...that's going to sit and wait for a while. What's the rush?

Everyone has sent so many kind words and love. They mean so much. I've been trying to respond to all the emails and messages, but it gets so overwhelming at times. Telling the same story over and over. Wednesday, I knew that things were done. I cried all day that day overwhelmed with a sense of loss and the inability to do anything for him. He was in so much pain and could barely communicate with me. So I did most of my grieving then, curled up next to him. And when he left us on Friday he was finally without pain. And that's it. That's the story. And I'm OK with this. We both are at peace.

We are planning a memorial of sorts for the 18th. I don't have details yet except we're trying really hard to get it set up at USAO. I will post more when I know.

LETTERS

Dear Chris, The first time I saw you I thought you looked like an evil villain. You had a full beard and dark and brooding look. The beard was for a play; I think it was Much Ado About Nothing. Any way, you wouldn't give me the time of day. You snubbed me the first time I said anything to you. But one day you asked me a question and after really listening to the things I had to say, you let me in. From then on we were a team.

Lord knows we've made mistakes over the years. Who doesn't? But we bumbled past and moved forward. That's how we roll. We've always wanted to be prepared for things we were never prepared for. This last bit being the biggest of them all. I'm not prepared for these days we are in now. I'm not prepared for you to stop talking to me or not being able to understand your words. The confusion, that's the worst part.

People keep telling me how strong I am and how well I'm doing. Like I'm some sort of champion of a messy death. Go me. I'm not as strong as they think. All of this I'm doing? The cleanup, the forcing down meds, the battle to keep you with me? I'm doing that because I don't know what else to do. Not because I'm strong. Yesterday, I was so tired I couldn't sleep. All I could do was cry and cry and it seems that it hasn't stopped. I have a perpetual leak in my tear ducts. And I'm sorry that in those rare few moments when you do actually see me that you're seeing my sad tear stained face. But I can't help it, because it's like you've already left me.

Remember that time you wrecked your scooter and I was so mad at you? I was so mad because first of all you did something so stupid and it could have killed you. But I was also mad because you wouldn't have a scooter to ride around with me on. I was mad because you wrecked the thing we did together. That is what it is like now except five thousand time worse.

THE WORST ROLLER COASTER

We had been sent home to die. At least that's how it felt when our oncologist suggested hospice care. They don't want to do chemo because his liver is not functioning. And we had a week of preparing for death. One night we laid in bed and talked about ashes. But then I started thinking "what if?". What if we can get his liver functioning? I've seen so many stories online in various health chat rooms of people with cirrhosis of the liver, and being on transplant lists, and livers riddled with tumors. I've read so many stories of the wonders of Alpha Lipoic Acid and Milk Thistle. One story I read was about a guy who had been told that he would die without a liver transplant. He walked with a cane. He started a regiment of ALA and Milk Thistle and now he runs every day. It's hope I can buy into.

Last Thursday they went and replaced his drains with bigger ones. The procedure left him in a lot of pain and he still didn't want to eat or drink anything and the last few days have been a constant battle. Battling the need and inability to take in nutrients. Battling pain. Battling to move. Battling to maintain some sort of hope. I begin to feel the darker worries set in. I worry my will for him to live is stronger than his own. I worry that tomorrow will be worse than today. I worry that I just don't have enough super human strength to fix him.

And then we'll have mornings like today. The kind of morning where the pain is manageable. The kind of morning where I get him to eat a whole carrot and some grapes and drink half a glass of Gatorade. The kind of morning where I feel like we've done something successfully. And we start to chug up that hill preparing for the next drop, curve or twist of the ride. And just maybe tomorrow will be better than today.

TODAY I WILL JUST BE HUMAN

I called a plumber. Last night, after it was brought to my attention that there was no way I could get a rented 100 ft drain snake into my car let alone down into my basement by myself, I called a plumber. I am still amazed at the relief that washed over me as I made that phone call. So, here I sit waiting for said plumber to arrive. My original intention was to get up at 5 AM, take a camp style shower, go to work for a few hours and then come home to meet the plumber at 9 AM. But it was too easy to give in today. Today, I let myself sleep until almost seven. I took my camp style shower. I got on my yoga mat, something that hasn't happened in over a week. I lingered over my breakfast. I peeled an orange for Chris.

Then, when Chris realized his wedding ring was missing, I searched until it was found. And when we realized it went missing because it's too big for him now, I found a chain from an old necklace and placed it around his neck. Then I allowed myself to cry. Because today I am human.

RETURN TO NORMALCY

Cancer is a fucking asshole. In the last week and a half, I've had a crash course in all things suckage that is cancer. It's a gremlin that wants to come in and tear apart everything. It wrecks any sense of schedule and routine to smithereens. Suddenly easy to grab crap foods are consumed and general filth begins to creep into every corner. All sense of normalcy gets kicked to the curb. Today was my day to begin to set things right. Today was my day to get the schedule and routine train back on the rails. I made a grocery list and a meal plan, bought groceries and went to the laundry mat. I cleaned and put things back where they belong. I made pancakes. All (maybe futile) attempts to regain a bit of normal.

I know the next few weeks, years even, are going to be filled with doctors, treatments, recovery from treatments, and rinse and repeat. Our days ahead are bound to be filled with crazy disruption. I also know that if I don't gain some control over regaining our routine, cancer will be able to claim a tiny victory. And I'm in no mood to let cancer have any more points on it's score board.

Today I bought flowers for my kitchen table. Today I picked up my camera for the first time in over a week. Today, I scored a point.

BECAUSE I KNOW YOU'D WANT TO KNOW

Chris is home! The shower is fixed! Chris still has cancer! Wait...that's not really all that awesome. Forgive me. I'm still having a hard time forming complete sentences. Chris is doing better. He still has internal shunts draining bile from his liver. His bilirubin levels are dropping and the liver doctor seems pleased with his progress. So they let him come home. You don't know how ecstatic this makes me and him. He's tired, but feeling better. Now, let's talk tumors (we can pickle that). Chris's tumor is in tricky spot on his liver. Right now, surgery is just not an option. The next step is chemo. We meet with the chemo doctors on Friday. Here's what we want to happen. We want Chris to respond well to chemo and shrink that tumor. If they can shrink it down, then they could go in and remove it. This is the plan we are clinging to with every fiber of our beings.

First of all, I can't thank you enough for all the kind thoughts and good juju you've been sending our way. The road ahead is going to be hard. Really hard. Harder then any thing I've ever had to deal with ever. And Chris and I are more than willing to give this a fighting chance. I've already threatened him with gallons of wheat grass juice. Things will be changing around here for sure. Hopefully for the better. Chris still stands by his belief that the Universe brought us to KCMO for a reason. The Universe just couldn't be all that cruel to give us one year of awesome only to abandon us now. I think he's right. Actually, I know he's right.

We take each day as it comes. We rejoice in tiny triumphs. That's just how we roll.