Here's an idea: there is a part of the brain, somewhere in the subconscious, that knows exactly what is going on in every cell of our bodies.

Somewhere in my head, the first moment that first cancer cell started to multiply inside of me, my brain knew it. And all the choices I made in my life were then being influenced by this knowledge that my subconscious brain had, but my conscious brain was not aware of.

You could even say that is what intuition is. That "gut" feeling is really just your brain knowing what's going on with you, before you, and making decisions accordingly.

And maybe someday they, the scientists and doctors, will find this part of the brain, and be able to hook-up a diagnostic machine to it, and an itemized list of every function, and malfunction, in our bodies will print out (no, not print, we won't be using paper at that point.) Just like a car.

Does this idea already exist? I'm sure it does. I hope they're working on it.

Coat Tails

Ok, so things are a little better now. I decided I would sacrifice not feeling nauseous for a bit, in order to find out if any of my medications were the cause of my funk. I had been taking a strong antiemitic as much and as often as was prescribe, to preventatively treat nausea. It worked, wasn't nauseous at all... but I had headaches, no energy, felt spacey. I felt water-logged, and when I would lay on my side it felt like all the water would settle to that side, and then when I moved it was like a tidal wave from one side to the other, or if I stood up, watch out, cuz chances were I was gonna lose my balance. So I decided, to not take the prescribed medicine, and if I started to feel sick, I would take some ginger instead. Low and behold, I started feeling better, and when I start to feel a little queasy, the ginger seems to do the trick! Though, note to self: don't clean up dog puke while trying to combat nausea, yourself.

So aside from my just feeling out-of-it that's been bothering me, is my complete lack of inspiration. I feel all I have to write about is a technical report of my health, I might as well just scan in the "visit summary" reports from my doctor visits, and post those.

Truth is, I think I'm avoiding certain thoughts, and feelings in the hopes that I will get answers to them soon, or they will just go away. My vision has not improved. The implications of this are so overwhelming, I can barely stand to think about it. And I don't even think about the health implications first. What will that mean for going to grad school in the fall? If I can't go to grad school, where will that put me in terms of career, living situation, life? I've tried avoiding this topic, but I can't, it's always there, every time I open my eyes, and see two images where there should be one. And the only thing I can do at this point is wait. And what does that mean, in regards to what's going on in my head? Did the radiation not do anything? Again, I just have to wait.

I've also started having emotions, facing realizations, that I haven't encountered thus far on this journey. When my friends that came to see me over the weekend were leaving, and we were saying our goodbyes, I was completely overcome with the feeling that this could be the last time I would ever see them. Now I don't think I'm gonna die tomorrow, or I should say, I don't think cancer is going to kill me tomorrow, but it really hit me for the first time, that this could, and very likely will kill me at some point.

I am hopeful, and optimistic, and positive, and all those things you are supposed to be, but I have to listen to my doctors, and trust them. They are helping to keep me alive, if it wasn't for them I would already be dead. But part of what they tell me is that I will never be cancer free, the best we can hope for is just to stay a step ahead of it for as long as we can, and that could be for years. That's all they've said. Well, the 2 year mark is coming up in June... so technically speaking, they've already kept me alive for "years". And at the moment, we are NOT a step ahead, we are running after it, grasping at it's coat tails.

I'm in a funk. Partly due to the the amazing weekend I had visiting with friends that I hadn't seen in a very long time, and now they are gone, and I am sad. But also because I've started to feel some side effects from my treatment. I really shouldn't be complaining that, so far, the worst feeling I've had from this treatment I choose to describe as "funky". I'm mean, it could obviously be a lot worse. I guess I would elaborate by saying, I feel like I'm wearing my body, and it's uncomfortable, and I want to take it off, but I can't.

And I'm not even sure what it is? They gave me the info sheets for the chemo drugs, and they list some common side effects, and this feeling isn't on there. And then I think about the fact that I just finished radiation, and though I hardly had any side effects from that, maybe now that I'm on chemo, it's combining, and that's what I'm feeling? Or maybe it's a side effect of one of the many medications I'm taking to counter act the side effects of the treatments I'm on? Or is it my actual illness? How do I know? I try to listen to my body, but there's so much in there, all talking at once, I don't know who's saying what?

And then, I can't stop eating. I mentioned this before, when I first started the steroids, but I've been tapering off the steroids, and my appetite hasn't really decreased. That makes me wonder if it's some kind of depression that I'm failing to recognize, and I'm filling a void with food? But it's not like I just sit on the couch with a can of spray cheeze and ritz, and mindlessly stuff my face. I have cravings, for really delicious wholesome food, and then I cook, and sit down, and enjoy them. So then I think, maybe it's one of those cancer revelations. Like, food is one of the joys in life that I should be endulging in, and damn it, I'm gonna! But it kinda feels like the munchies, so I don't think it's just that, maybe just the part where I don't want to waste a good meal on something blah. Gourmet munchies. Again, not really something to complain about, but still has me feeling... funky.

New Chemo Day 1

It feels good to have the poison back in me. Weird statement, I know. But I wasn't safe, I could feel it. In the past 7 weeks that I have been off chemotherapy, in order to do radiation to the brain, I could feel it on the move in the rest of my body. Have I really become that aware of my body? Or have I just become paranoid? I'll find out next week, when I get the results of my scan last week, but I could feel it. And now, I feel safer.

Robots, Spinal Fluid, and Shoes

I felt it was time for some good news! These are small things, so don't get too excited, but to be cliche for a moment, it's appreciating the little stuff that really counts when it comes to happiness.

First off let me tell you about last Saturday, when my 4 year old nephew came over, and persisted to speak like a robot. It was a really good robot impression, sounded like some one who had a laryngectomy, and was using a voice prosthesis. I asked him how he was doing it? He stared blankly. I chalked it up to him being 4, watching too much TV, and let it go... until later that night when I turned on the TV. Certain voices in certain octave ranges were also robot voices. Ok, now I'm worried. It wasn't my nephew, once again, it's my own damn head! I took and extra dose of my meds, but decided I wasn't going to call the on-call oncologist at midnight. But it was the same the next day, so I called. He didn't give me any explanation, just told me to take an extra dose of meds, and come in on Monday. Oh boy. So I did, as always, preparing myself for the worst as we got closer to the hospital. But was quickly relieved of my worries once the doctor stuck an otoscope in my ears. Sometimes after radiation to the noggin, fluid build up can occur behind the ears as a result of the healing process, and cause hearing to be funny for awhile. The only real concern is that it can get infected, but they said I should be fine, just keep on the look out for signs of infection: pain, fever, chills, that kind of thing. So the robot voices will be around for a bit, but they're friendly robots, so that's ok by me!

The next bit of good news, which actually is really good news, so I have a little trouble fully accepting it. I'm still waiting for the phone call to say they mixed up the test results, but as of right now, they are saying there no detectable cancerous swimmer cells in my spinal fluid. Which means a port does not need to be placed directly in my head! Uh, YAY!

And the last bit, not health related at all, but makes me happy! In my mad cleaning, preparing to be immunosuppressed once again, I found the keys to my vintage Samsonite luggage, filled with vintage Jackie Kennedy style dresses, that I acquired over 10 years ago, locked up, and then lost the keys. I am very excited about this! Now I have an excuse to buy the $80 nude pumps that I desperately want, but had no real good reason to buy ;-)

Battle?

I've often heard people refer to someone who has died from cancer with such statements as, " So-and-so lost their however-many-year battle with cancer..."

"Battle"? Like in a war? I guess I get that. I do feel like I'm in a fight for my life, but battle doesn't seem like the right kind of fight. A battle is planned, strategized, had some motive to even begin. I even associate a sense of honor or pride with battle. And though now, with my team of doctors, there is a degree of planning and strategizing that does liken it more to a battle, there is no pride, no honor.

A battle, for me, conjures images of idealistic young soldiers of a bygone era, neatly dressed in their uniforms, dying for liberty. Or fearless Samurai, in full armour, skilfully and fiercely fighting and dying dutifully, with integrity. It's a little hard for me to compare these romanticized ideas of warfare to a disgustingly devastating biological anomaly like cancer.

If I had to pick a better analogous "fight" to describe cancer I would compare it to domestic violence. Now having never experienced domestic abuse, I don't truly know if my analogy is even accurate or appropriate. But then again, I have never been to battle either, and people throw that word around like confetti.

I was attacked. Not by an enemy with a motive or vendetta. Not by a stranger out on the street, in a bad neighborhood. But at home, by someone I trusted, someone I took care of even, loved, felt safe with, my own body.

There are a few people that may learn how they got cancer. Or there are others who fit the mold of someone predisposed to get cancer. And in those cases they can blame lifestyle, or exposure to carcinogens, or genetics. I fit none of those categories. I've tried. Doctors won't buy it. There is no one, right now, that can explain, or even has a good idea, why a 27 year old, leading a healthy active lifestyle, with no prolonged exposure to dangerous carcinogens, or genetic predisposition wakes up one day to find she has stage IV cancer.

My body attacked me. It's the one place I couldn't escape; my body, my home. That is why I liken it to domestic violence. Because no matter what you do to distance yourself from a dangerous relationship, you're still connected to that person in someway. They were your partner, your confidant, maybe they're even the father of your children, and now you fear them. You try to remove yourself from the dangerous situation, get protection, file a restraining order... find doctors you trust, have surgery, start treatment.

You try to start to rebuild your life, but always knowing he's out there, possibly stalking, planning, you never feel quite safe. You wonder what he might have been doing while you were trying to fix yourself... going in for a scan, or a blood test, waiting for the results to see if cancer has been abiding by it's restraining order, or if it's been one step behind you the whole time.

And maybe, you have a case where he goes to prison/remission, and you feel a little safer knowing he's not roaming the streets. But maybe that's not your case. And he's still out there. And he is planning something. And then one day that mother fucker is waiting for you when you get home, and he beats you to death.

They don't call that losing a battle... that's called fucking murder.

When this whole thing started, meaning, form the moment I was told, "You have cancer." (and actually, those weren't the words, they weren't even speaking directly to me. They were telling my mom, and said, "She has cancer." and I just happened to be laying in the hospital bed next to her, drugged up from a 9 hour spinal fusion surgery, and overheard them. Either way, same impact.) and for quite some time after being diagnosed, any kind of cancer campaigning really rubbed me the wrong way. Pink ribbons made me angry. And I'll admit, even now, pink buckets of KFC for cancer just seems inane. Part of that is my opinions about the fast food industry, but something about the way cancer awareness is presented to the public, is a bit euphemistic, to the point of being cutesy.

But I'm experiencing, both with myself and through meeting cancer survivors, that once people reach a certain comfort level in their own situations, that there's almost a natural progression towards advocacy and awareness, and just wanting to help.

My biggest topic, I want to advocate, and actually bring change to, is early detection. And not just to the public, but to the medical industry, as well. Here's a little background on me: I'm 29 now, I was diagnosed 2 years ago at 27. There is no history of breast cancer on my mother's side, my father's sister died of breast cancer at 50. I was 24 at the time, so breast cancer didn't seem like an immediate concern then, though looking back, I probably already had it. Plus, doctor's tell me that paternal genetics don't really factor in, anyway. Well, ok then.

But I wasn't a complete dullard. I had been doing self exams in the shower from the time I was a teenager. My mom had this model her obgyn gave her of this little squishy plastic breast with some, what I can only assume were, marbles embedded in it. It hung in the shower, and I felt it, and felt my own, and aside from it not even feeling like a real breast, I never felt anything even remotely close to this doughy, plasticine-like, marble filled maquette in my own breasts. Granted, I was just a teenager at this point, but I continued self exams throughout my 20's, and was told a variety of different methods for examining, and what to look for. I was told, "Lumpy, like oatmeal, was ok lumpy." Well, what kind of oatmeal are we talking about here?? I like my oatmeal lumpy. I was told not to dig around in the breast, that abnormalities would be felt with a flat hand. I was told pain is an indicator, but that premenstrual pain and firming was totally normal. And I was told that every woman has one breast that's larger than the other.

Here's what I did find: one breast was bigger than the other, and before my periods, it would get firm and painful, and the nipple seemed kind of anchored to the interior of the breast, where the other did not. I told my obgyn, who did an exam, and told me to lay off the caffeine. This was probably 6 months before I was diagnosed with Stage IV breast cancer. At that point my main concern was all the other pain I was having. Back pain, chest pain, trouble breathing. I went to several other specialists to address all these other pains, no one really came up with anything. Muscle spasm, was one guess, pneumonia, was another. One of the specialists even did a breast exam. He told me it was most likely Costochondritis, an infection of the ribcage, and it would go away. The night before I woke up unable to walk, with no feeling in my legs, and went to the hospital to learn I had a broken back caused by the metastasis, I remember standing in front the mirror looking at my body, and wondering why I was in so much pain. My whole chest seemed misshapen, and there were dark veins running in the direction of my left breast. Once I was diagnosed the oncologist even said that my tumor is not easy to locate. It was large, and flat, and just kind of blended in. Looking back, that firmness I felt around my periods was probably the closest I ever was to detecting it before it metastasized. But I did mention that to my doctor's, and was told it was pretty normal, just stop drinking coffee. So I don't know what else I could have done to catch it any earlier.

I recently reconnected with a friend and told her my story. She is 32, and said that she has similar symptoms with her breasts, pain, firmness, size difference, even chest pain. I don't want to make anyone paranoid, or turn them into a hypochondriac, so I just told her to see her doctor. She did... they told her to stop drinking coffee. Hearing those words again, made me shudder. I understand it would be unlikely, for a friend of mine to have the the exact same condition, but because I have it, there's no way I can sit here and say it's not a very REAL possibility. Because it is REAL for me. And the sad truth is that cancer IS almost that common.

So my dilemma is, what do I do with this? How can my story help? Especially since my story consists of me having next to no symptoms until it was already advanced! I don't know how that's supposed to help anyone? But I do feel the first step is putting my story out there, and seeing what comes from that.

I understand the medical industry is not going to start doing mammograms on every 25 year old, with no maternal family history of cancer, who's breasts hurt occasionally. But maybe if people weren't only specifically looking for perfectly round marbles, or extra lumpy oatmeal, or knew that zombie veins on their chest might mean more than just poor circulation, and if doctors exams were a little less generic, and their patients concerns weren't dismissed due to age.... then maybe, someone, anyone, might not find themselves where I am now. And that would be something.