Saturday, May 28, 2011

Enemas, colonics and juice fasting oh my!

Ok so I've been researching some info on diet and cancer, and well there's some interesting theories out there. But the one I'm looking into in particular, and mind you, I've only just started to research it, but it's basically about the raw food movement and vegetarianism.

Now one of thing about being a pagan is that many are vegetarians or vegans. Why is that? Because the first rule of paganism is "harm none". And well it isn't "harm none unless they are really tasty on a bun", it's just plain "none". So, it's something I, and many other pagans have struggled with for a long time. And I'm always amazed at how vegetarians/vegans get a bad rap for being pushy or having an agenda or something. I've known a number of vegans in my life and not one of them has ever tried to push their lifestyle on me or been condescending, they just happily enjoy the fact that at the end of the day, they are WAY healthier than the rest of us!

So the theory is that if you eat 75% of your diet raw (and we're talking about veggies here, not sushi, though if anyone reads about sushi curing cancer, please forward me those links!) The reason is that raw food contains enzymes that are lost once they reach a certain temperature in the cooking process and your liver needs those enzymes to function optimally. And there is some evidence that the liver can help rid your body of cancer cells. Now I know what you're thinking, it sounds a little desperate. And yeah the idea of me going vegetarian would totally count as desperate for me, ha! But no, desperate would be hopping a plane to meet John of God in Brazil and that eyeball scraping does NOT look like fun.

The other part of the theory is that if you keep your body oxygenated, cancer is less likely to thrive there, because apparently cancer can not survive in such an environment.

There actually may be something to this theory not because so many people have claimed it "cured" their cancer. But because the new wave in cancer treatment is "targeted therapies". I'm on one of them, Tarceva. And do you know what Tarceva does (besides cause my face and bowels to explode on a daily basis)? It blocks certain enzymes and right now the Germans are studying enzymes' role in cancer spreading. Then again I could be completely misunderstanding it all, especially since my brain is currently being fried.

But here's the deal. The books I'm reading by no means offer this up as a cure. The first I read about it was in Crazy, Sexy, Cancer Tips, Kris Karr, the author has an extremely rare form of cancer (the name of which escapes me) and she was diagnosed as Stage 4 in 2003. Now the weird thing about her cancer is, it's malignant, it's sitting in her liver and lungs, but it isn't growing or attacking her in anyway...yet. She literally has to be scanned every few months and she just waits for this cancer to activate (told you it was rare, only 100 people get diagnosed with it a year). So she chose to do the whole vegan/raw food thing. And guess what? Are you ready? She still has the damn cancer, it hasn't budged. But she feels better in other ways so she's an advocate of the diet plan. She learned about it from the book The Cancer Battle Plan. So I picked it up.

Now the author of The Cancer Battle Plan, Anne Frohm, was diagnosed with a rare form of Breast Cancer that invaded her bones and brought her very close to death several times. She had a double mastectomy, several rounds of chemotherapy, radiation and a dangerous bone marrow transplant. But she was ultimately sent home to die because her doctors felt there was nothing more they could do for her. She decided as a last resort to try nutrition as a treatment and she eventually was cancer free and has been cancer free for almost 20 years.

Now what I love about Frohm is she thinks it's all those things combined that cured her, not just the diet. But she feels the diet is the one thing you won't learn about from most doctors so she decided to write a book about it. She is, of course, not the only one, there's a ton of books out there about this very topic. But some of them stop just short of encouraging you to avoid all western medicine and I think that is irresponsible. I think these things can work together, not against one another.

But here's the icky part, it's not just about turning to a vegetarian diet. There's another part to it. Well two parts to it. The first is the juice fast. Which she advocates for 2 weeks. I think I could do it for a couple of days, but 2 weeks? Um no. Also there's a lot of herbs and supplements involved and I'll have to run them all by Dr. Krug. Sloan's policy is if you do it with food, go for it. But if it is in pill or liquid form you have to tell them because there are herbs and supps that can work against chemo, radiation and pills like Tarceva.

And then there's the enemas! Twice daily my friends. One with water and one with coffee. PLUS they want you to go for regular colonics. The reasoning? Because we carnivores apparently have lots of meat particles that live in our colon for years and just rot into carcinogens. Hey I said it was icky. So that's part of the diet plan too. Now truth be told I'm having trouble accepting that my ass is the key to the cancer riddle. But I think I might give the raw food portion of it a try.

But mind you I'm not doing any of this until radiation is over and I have had a chance to talk this over with Dr. Krug and the Sloan Nutritionist. I'm sure they'll have no problems with the vegetarian part of the equation, but they might have something to say about the juice fasting and certainly the supplements.

We'll see. This is not a matter of small lifestyle changes for me, this is an entire diet overhaul. And truth be told, I don't know if I can do it. I know it's a great choice for me (the vegetarian thing I mean) cause it certainly can't hurt. In fact it'll improve everything else that's wrong with me. But it will really require me to think differently and well, eat differently. And since food is a major source of comfort for me, this will require a lot of will on my part. And I'm not gonna lie, I don't know if I have it in me. But I will keep you posted on it all (well except for the enemas...)

Friday, May 27, 2011

5 fat people working at Sloan, YAY!

Ok so you know that I keep saying that the people who work at Sloan are all gorgeous. Just naturally gorgeous, like no heavy makeup or plastic surgery or anything, just plain beautiful. I mean the nurses, the doctors, the administrative assistants, all of them. And they even have the nerve to dress impeccably too. It makes me sick.

Even the men look like underwear models, if Abercrombie and Fitch ever sell scrubs they have a ton of models ready for them!

Oh so this post is about radiation. In case you were wondering...

I get into the radiation oncology office on May 17 and this tiny little doctor comes in (another student of course, Sloan is swimming with them), she's adorable. But she's sick and her nose is leaking like crazy. John is totally panicking, he is a germ phobe normally, me having cancer has only made him worse in that regard. She takes my history and does a short exam. She gives me an overview of what radiation is, she is very nice, informative and is excellent at explaining things in terms I understand. I like her leaky nose and all. But again, she's an attractive little pixie like everyone else at Sloan.

So imagine my surprise when Dr. Chan and his nurse Veronica walk in and they are big pudge balls. I was SO fucking happy. I know this makes me evil, but they walk in and my brain yells "MY PEOPLE!!!" I don't know how they slipped through the job screening process. Maybe they started out thin and now that they've hit the Hostess Cupcakes they can't be fired? Or maybe Sloan has an affirmative action program for pudgy people (would that be affirmative in-action?)?
All I know is, I finally found the fat people. There's 5 of them total and they all work for radiation oncology. I don't know two of them personally, but I've seen them around, they exist and I go out of my way to smile at them in the hallway. I wonder what they think of that. Though I suspect the smiles we share are really a silent mental fat girl high five. But I digress.

So Dr. Chan tells me he's talked to Dr. Krug and there are two possible approaches. The conservative approach, which is a one time treatment to zap the big brain met, the one that bled in March. Or we can radiate the whole brain and go after all 9 mets (btw that is the final number, I'd been avoiding learning that number for a while, but that's it. I have 9 mets in my brain. Which sounds like a lot, but when you read the brain MRI report it says 9 mets. The cat scan, on the other hand, says "innumerable" masses in the lungs, so imagine how many cancer mets I have there, they don't even bother counting them, fucking A!) Dr. Chan thinks, if I agree, we should go after all of them. I was like FUCK YEAH! I'm so glad he's gung ho about this.

I can't explain it but before I met him I had this fear that they would say, "well we looked at your scans and we're sorry we can't help you. You'll just have to go home and die now." I know that's stupid, but I felt that way before I met with Sloan for the first time in Jan too. I think it's just a natural fear. I was surprised to discover that John had the same fear, so that's interesting, I bet all of us had that thought swimming in our head actually. So when Dr. Chan is like let's be aggressive and he talks about how treatment should actually get rid of the brain mets, not just treat them, I am excited. I was like dude you mean they'll be gone? And he was like "oh yeah". Not, "well we'll see", he's like yeah I'm going to kill those fuckers (my words, not his). I wanted to kiss him!!!! And then after we talk about side effects and we ask loads of questions, which he answers honestly, but with an infectious positivity, we sit down with Veronica.

She goes over the side effects again in greater detail, but like all the nurses at Sloan, she then starts to arm me with the info I need to deal with them. So I will lose my hair, I've been waiting for that for months, but it actually will happen now. So in a couple of weeks, I'll be bald. Now with the chipmunk cheeks and redness from Tarceva, it will not be super attractive but I'll take it, cause my brain mets are dying baby!!!! And then we talk about skin irritation, so my forehead and scalp will feel a bit sunburned. There's the fatigue of course, which is actually hitting me right now, but it's not insurmountable. It's just, hey it's 3 pm I'm tired, I felt that way at work and headed to the snack machine. So basically it's not a new symptom to my life, ha!

There is a possibility that I'll lose some short term memory. I had read about that somewhere on the internet. But I read it's less likely with radiation on mets cause they require less radiation than tumors that initiate in the brain. But Veronica tells me that if I go to the store, I have to write down what I was going to buy. I was like, um I do that now. And everyone in the room agreed, so again, nothing new to my life or anyone else's apparently. And the only other thing we go over is that because I'm doing whole brain radiation I might get cataracts when I'm older. I was like if you can get me old enough to get cataracts, I'll throw a fucking cataract party and invite the whole radiation team, I'll party my "can't quite get anything into focus" ass off! And then there's mild headaches and something about my hearing. I forget, uh oh, losing my memory already...

I had to have a simulation the next day which John kept calling rehearsal. Which now makes me wish there was singing and dancing involved and of course I can't get the first number of A Chorus Line out of my head "5, 6, 7, 8, "...."Who am I anyway, am I my resume..."

So I meet these two technicians who take a mug shot of me and then put me on the table of a cat scan machine and get me ready to be fitted for...the mask. It starts out wet and feels like a warm towel. One of the techs puts her hands on my face to the mask can hug the curves of my brow bone, nose and chin. There's a big hole for my nose so breathing is not an issue. And all in all, it's not an unpleasant experience.

I go back this past Monday thinking I'm going to have my first treatment, but I'm wrong, it's another simulation. See they have to take the mask, which is now hard as a rock, secure me to the table with it and make sure my head is at the right angle for treatment. So they take all kinds of pictures and x-rays. On Tues. I have my first actual radiation treatment, but only after some more x-rays. Turns out this whole radiating your brain thing takes a lot of accuracy, and these guys take it seriously. And what I love is that despite being all business and obviously awesome at their jobs, these techs (and there's 4 that do my treatment, my team as it were) never lose sight that I'm a patient, they are always concerned about my well being. Am I comfortable, nervous, claustrophobic, are my knees ok, etc... I love them. Plus they let me take a picture of the mask which is super cool.

But treatment itself is literally 2 minutes long. Now I understand it will work it's way up to 6 minutes by the end, but for now, it takes me more time to hop my fat ass on the table than it does to actually radiate my brain. It's totally fascinating. Travelling to and from is a bitch, but after my and other people's experiences at SIUH, I'm not taking any chances. For all I know they'll fry my damn foot off or something, so I'm sticking with Sloan, traffic or not.

So today I had treatment #4 of 14 total. I'll have one every week day (sans Memorial Day) until June 16 I think. I'll know how well it worked by the end of June. And then we'll regroup once again and find out what the new routine will be. So from 6 hours of chemo every three weeks, I'm now doing 2 minutes of radiation every day for 14 days. Who knows maybe at the end of June it'll be leaches or something. But you know, I'll be ready...

Perception or I should be happy but...

Ok so on April 25th I had another Brain MRI and Cat Scan. I got the results two days later and it turns out the masses didn't shrink any more since the March 9th scans (except for the liver mass, that one went down a smidge, go liver!) Now to give you perspective, with the exception of the one in the brain that bled in March. they are all measuring in the millimeters (the bleeding met is about 1 cm). So they are all really tiny, but they are still cancer and are still inside me so I still hate them millimeters or not! ;)

So the doctor says looks like chemo has done as much as it can to shrink them, now we must turn our attention to the the brain mets because it turns out your blood clot isn't gone after all. So Brain Radiation is scheduled and the reasoning is that we can kill the blood vessels around the brain mets and make it safe for me to take blood thinners again. So truth be told, I wasn't happy with this news initially. I really wanted to hear that the masses were still shrinking and a couple had even disappeared. I didn't like hearing "no change" from March 9th. I also REALLY didn't like hearing that the blood clot is still there. Grrr! So my next apt. with Dr. Krug is set for the end of June (when I'll have another round of scans) and Radiation starts mid-May. But that is out of Krug's hands and in the hands of the radiation oncologist at the main hospital. So I'd have a two month break from Dr. Krug's office. And finally my remaining two rounds of chemo were cancelled which none of us were happy about.

Now we have to be the only people in history bummed about not getting chemo. But you know it takes a lot to psych yourself up for it and when you are ready for chemo you are READY for chemo. So it was an odd day for me. And I bitched and bitched in the waiting room to my family about how pissed off I was. I feel bad about it now, but at the time I just needed to vent. Plus I needed to work it all out in my head and get some handle on what I was just told. Esp. since Dr. Krug seemed happy and yet the news he was telling me was registering in my head as a bit of a negative.

But here's the deal...

What Dr. Krug meant was "Wow, we've seen a lot of shrinkage in these last few months, you're responding beautifully. Chemo is no longer working right now so let's pause it for a while, but that's ok, cause it can work again in the future and we've got Tarceva on our side (the pill I take every night) and that works great. Tarceva not only will keep the masses in check, there's even a chance it can kill some of the smaller masses. So now we can kill those brain mets and focus on the blood clot. But you're doing well and radiation is a piece of cake after what you've been through these last few months."

Now the reason I know that's what he meant is because this is how it was told to me by my radiation oncologist, Dr. Chan. You see Dr. Krug is a good guy, I really like him. But he's MAJORLY geeky, very scientific. Now in terms of fighting my cancer, I like that. But in terms of giving me news, he's not too great. Only in the sense that he is bad at conveying tone (not information, he's ok with that). Like he was SO confused why we weren't happy with what he was telling us. But had he came at me like Dr. Chan did I would totally have reacted differently.

Now while I waited to meet Dr. Chan and got this lovely perspective, I had some time to think. And I decided a couple of things. For one I have an archaic perspective of cancer. I just want this shit out of me and for the most part stage 4 cancer is now more of a chronic illness than a death sentence that it used to be considered. (And in the interest of honesty, when I first got the news from Sloan back in Jan, the word terminal did jump around in my head a bit.) So I do have to wrap my mind around that fact. Plus look having a lower stage is no guarantee that you will be cancer free forever. I know plenty of stories of people who had stage 1 cancer and then years later it came back and spread like mine did. So getting it all out of me, as much as I would like that, really doesn't guarantee a damn thing.

Also I had to remember this is only 4 months in. I knew I'd be fighting for months and years why did I think I could beat this in a couple of months? How arrogant is that? Plus, I realized that I was losing my faith, my faith that anything is possible and yeah maybe there is a miracle waiting for me. And finally I decided to use the time I was given, April 27 to May 17 (the time between Dr. Krug and Dr. Chan), to regroup. So for one thing I enjoyed feeling like myself as the chemo worked it's way out of me and ultimately enjoy myself while I waited for radiation to begin. And I decided to start reading about other things I can do myself to fight my cancer. Educate myself and then show up to the June 29 appointment with Dr. Krug armed with questions.

So we've read a bit about using celebrex along with Tarceva because there's evidence that it can boost Tarceva's effectiveness. I'm also reading The Cancer Battle Plan (which I read about from Crazy, Sexy, Cancer Tips) which is about diet and shoring up your immune system and liver to help in the cancer fight. Now what I like about these books is that they make no promises. They aren't selling you any snake oil, I'll get more into this in another blog, cause it would require me to turn my diet life upside down! Which for me will be damn hard. But again, for another time...

So after a couple of days of working it all out in my head, I felt better and I went into May feeling good. I did all kinds of shit, crafts, cleaning, I went to Chelsea Playground with Sophia and climbed like a monkey with my daughter throughout the giant thingamagig, which for a fat chick like me was crazy impressive.

I've been playing Uno on the iPad like it's going out of style and acting a bit more like myself. I had the famiglia over for Mother's day, which we did a big ole crazy brunch fest that my brother-in-law, sister-in-law and we catered from Pathmark, it was pretty cool. The pound cake was to die for! And then we had a little family pizza party for Soph for her 3rd birthday. It was awesome entertaining and having a house full of people I love. I wish my house was bigger I would have had more people!!!

So then May 17th arrived and I met with the radiation team for the first time. And they really helped me gear up for the fight for my brain. So, where am I right now? Feeling good, just a tad tired, but I feel like I'm in warrior mode again. And I'm still attacking my to-do lists, just taking a nap here and there. And I have to go off of Tarceva while I'm on radiation because of the skin irritation caused by Tarceva, so you know what that means? I can eat all fucking day, woohoo!!! No 3 hour block of no food every night.

Fat girl happy, very happy!

The Bitch is Back

Ok so I haven't really felt like blogging a lot these last couple of months and I really couldn't figure out why. But looking back I think it's a couple of things. I think for one thing that last round of chemo, round 4, was great. I felt absolutely fantastic. I felt so good I did a lot of stuff, went out, organized every closet in my house, attacked to-do list after to-do list. And so I think the first reason was that I found a lot of ways to keep busy. But I think there's another reason, I think I felt so good that I didn't want to remind myself that I was sick. It was like a healthy denial I guess. Healthy in the sense that I'm still taking my meds and doing everything my doc tells me, but denial in the sense that hey I'm not going to sit around thinking about it.

Now I don't mean to imply that blogging brings me down, it doesn't, but since I had so little to complain about I guess I just decided to bounce around being happy hanging out with my family, occasionally making a lunch here or a dinner there. Just being me a little bit. I still journaled (hell yeah I'm making up words!) and I read a lot. I read a gazillion books! Ready?

Bossypants - Tina Fey (didn't love it)

I Know You Are But What Am I? - Samantha Bee (LOVED IT!!!)

Wishful Drinking - Carrie Fisher (funny fast read)

The Glass Castle - Jeanette Walls (fascinating)

Squirrel Seeks Chipmunk - David Sedaris (could NOT put it down)

I Drink For a Reason - David Cross (at times hilarious and at times a little insulting)

Nothing's Sacred - Lewis Black (if you're a fan it's a must read, he is such an interesting, thoughtful person)

Are you there Vodka? It's me Chelsea - Chelsea Handler (eh, it had it's moments)

Crazy, Sexy Cancer Tips and Crazy, Sexy, Cancer Survivor - Kris Karr (very enlightening and fun if you can believe it)

Plus a whole bunch of toddler discipline books (none of them work on my insane child.)

And then my treatment changed and well that came with some anxieties. I'll explain in the next post, but it's really a matter of comfort. I remember when I worked at the Body Shop in the mall when I was a teenager and they'd send us these regional managers from eastbubbafuck nowhere who would use terms like "comfort zone" and shit, and that drove me insane. Like enough with the gimmicky language, we're selling 26 dollar shampoo, having a "script" isn't going to make it more palatable to people's wallets. But I am about to use that term right now, sue me!

I had just gotten used to the whole chemo thing plus I had a great round 4, no dehydration, no vasovagal, no hospital visits. And then I hear we're done, time for radiation. It's a whole new mental and emotional adjustment, I was out of my, wait for it, comfort zone. Fortunately, my internist had given me a heads up at the very beginning that was how it would be. Just when you got the hang of something you have to find your footing again when they throw something new at you. So that just added to the I don't want to blog feeling.

Speaking of which John and I have had to institute a cancer safety word. It's not as much fun as an S&M safety word but equally necessary. For the record it's "banana", meaning that when John starts verbalizing his anxiety about me being off of Tarceva while on radiation, I can yell "Banana!" instead of "Will you shut the fuck up already!" And all cancer talk must cease. Partially because I read about it in a book, and partially because it's awkward yelling "Shut the fuck up" to a man while his mother is staying with us.

I feel bad because I know some people worried that I wasn't blogging cause I was too sick to type and the exact opposite was true. But I have a lot on my mind that I plan to torture y'all with, so there's more to come. As always thanks for listening and reading and god knows why you guys come back for more but I love ya for it!

Wednesday, May 18, 2011

Little update

Sorry I haven't been blogging lately, don't really know why, but I'll explore that in the future, I promise. Right now my laptop is at Best Buy getting repaired. Sophia has kinda destroyed it, the whole back is coming off and the shift key is gone (otherwise it works fine) but I'll be without it for 2-4 weeks. And blogging on the iPad is hard, mostly because I have a major Uno and Fruit Ninja addiction...

But I'm on my parents' computer right now, so here's the update.

On April 25th, I had another set of scans. They showed no shrinkage in the tumors from the March 9ths scans. So that means chemo has done all it can for now. Now initially I wasn't thrilled with this info, but it turns out this is pretty positive stuff, again will explain in the future. Another thing that didn't excite me was finding out the blood clot is still there and the same size, so SIUH totally got their info wrong. Ugh!

So the plan now is to radiate the brain, get rid of the brain mets (woohoo) and go back on the blood thinners. I met with the radiation team yesterday, they are really nice, funny, and crazy positive. Just another reason I love Sloan, they are like, let's kill these mets and get that shit out of your brain. They also were explaining to me that I have been responding very fast and well to my meds which is something I need to be expressly told (cause I'm a doof and only understand things when you use small words!) and I came out of that apt feeling like a million bucks.

So I start radiation next week and I will def lose my hair, but I think I can handle it. I just hope Sophia is cool with it. I have to say, even though I'm not enthused at the idea of my bald head, I hate the idea of cancer in my brain even more! So I'm ready for the fight.

Also I never went and got the tattoo I was going for, I just felt too tired, mostly because I did a lot of stuff for Sophia's birthday this past weekend. But I'll likely get it after treatment if Dr. Chan says it's ok.

Otherwise more blogs will come I promise. Thank you again for all the love and support. I am not joking when I say that knowing you are all behind me is what gets me thru this.

And a special shout out to the Cucu Cancer Fighters! My cousins' Relay for Life team that they created in support of me (how fucking cool are they?) The relay was this past weekend in Barnegat, NJ. They raised over 5 grand!!!! They deserve a standing ovation I think! Much love to all who contributed! And a special hand to Jessica, Beth, ToniAnn and Tracey for all their hard work. Esp. Jessica who hosted Jewelry parties and fundraisers. You guys rock and I LOVE YOU!!!!

Now to keep you interested, keep a look out for the following blogs:

Fat people working at Sloan, I finally find my people!!!

Enemas and colonics, are you shitting me?

Peeing thru the power of Christ


The Occult and Kitchenaide


Much love to all!