Monday, December 19, 2011


So I figure I am this close to getting my medical degree. What are my qualifications you ask?

Well last month I developed a bit of chafing in a delicate spot (under the left boob) and it HURT LIKE HELL. So I got out the bacitracin and gauze and applied it the area and waited a couple of days for my appointment with the ultra-handsome Dr. LaCouture, Sloan's dermatologist. So he looks at my handiwork and said "well doctor, I am impressed with your course of treatment and recommend you stick with it until the rash is gone." Now I know you're saying yeah what does that prove exactly? Well consider this...

Two weeks ago, Dec. 5, I had my routine Brain MRI. Side Note: I posted on facebook that I never in a million years thoughts I'd hear the words "Ok Mrs. Cucuzza, this is just your usual MRI." And he said it like he was making me my daily Tom Collins or something. It was pretty amusing to me.

Anywho the next day I developed hives. I didn't think anything of them at first because I also ate some provolone cheese and if they don't get enough of the rind off there can be a touch of mold on it. Now I'm not talking about cheese that's past it's date, I mean the mold that they use to protect the cheese casings while they age. They wash it off, but there can still be some on there and I'm MEGA allergic to mold. But there was a chance too that I was allergic to the IV dye that they give you for the MRI.
So to reduce the itchiness I did a couple of things. I went back on my Claritan-D which I didn't really need now that Fall is drawing to a close, I used a hydrocortisone-antihistamine cream, and I upped my steroid from 1/2 MG to 1 MG.

But when the hives reached day three I called Dr. Krug's office (my oncologist). I told them everything including my self-medication. And while I'm telling the nurse on the phone, and she's like "wait, you upped your steroid?" I was awaiting a big ole lecture. Instead she says, "ok I'm going to talk to the doctors if they want to add anything but confidentially you did an amazing job treating yourself." When she called back after talking to the doctors she said "we all recommend you continue your current course of treatment until you feel the hives have gone". BOOYAH!!!

Then yesterday in the middle of the day my ear started KILLING me. I've never had an ear infection (at least not since infancy) so this is new to me. But my husband has had a couple so I get right to it. My apt. with Dr. Krug was scheduled for today so I knew I'd have a doc look at it within the next 24 hours, but I still decided to mobilize to ease the pain.

So I take my antibiotic Bactrin (that I'm on 3 times a week, literally Mon, Wed, Fri) to help prevent pneumonia which can happen from being on dexamethasone (the infamous steroid) which is a big deal because it's a Sunday. And then I find John's Cipro drops and use that. I take my Claritin-D to help dry up some of the liquid and tylenol to help with the pain and swelling and finally I take my rhinocort nasal spray twice a day instead of once.

I go to Krug's office to hear about my scans and answer the usual "how are you feeling?" questions. And I told him about the ear and even brought the drops with us, so he knew exactly what I was taking. Krug takes one look at my ear and says "Whoa, I haven't seen an ear like that in years" so it was confirmed this was not a lagging radiation side effect, this was a good old fashioned ear infection, like babies get (that Krug gleefully teased me about).

But what did he say about treatment? "Do you feel these drops are working?" "Yes, I do" "Ok, let me write you a script so you can have your own bottle and not have to use your husband's."

So that's three instances of successful self medication within a month, I came out to the waiting room and was like, so let me talk to people here and see what I can do for them. HA!

And my medical advice is legendary. A few years ago at work, my friend Matt climbed a fence and ended up ripping open his hand and wrist on a Saturday night. On Monday at lunch we see his hand and are horrified. He really cut himself badly and the scab was enormous. So he says "I'm going to go to the doctor and get stitches." And I of course I immediately remember that episode of ER where Dr. Green decides to do something about the long wait all the patients are enduring in their hospital, so he takes the care to the "chairs" and does all this renegade doctor shit. But then he gets to a boy who needed stitches but he can't give them to him because they made him and his mom wait too long in the waiting room, that it's too dangerous to give him stitches. The risk of infection was two great. So I said to Matt, "You can't get stitches it's been too long."

But Matt went to the doctor anyway to get his expert opinion (whatev!). And he showed him his hand and said, "Do I need stitches?" and his doctor said "You can't get stitches it's been too long." So Matt says "that's what the girl at work said."

I mean come on, I am GOOD! So whatever you need I'm the Dr. Nick of Staten Island. "Hey Everybody." "Hello Dr. Nick!" Now I know what you're thinking, that's illegal stupid. And to that I say "come oooooooooooooooooooooon. I got this! Now bend over and cough!"

Monday, November 14, 2011

Guest Blog by David Haas

Today I have the pleasure of introducing a guest blogger. David Haas is a cancer survivor and a staff writer for the Mesothelioma Cancer Alliance Blog and is an advocate for cancer patients and their families. He asked if he could post the following article and I gladly accepted (especially since it's advice I need to take myself). It's important information for all of us who have faced cancer or who have loved ones who have. Great advice from a great advocate! Enjoy!!!!

The Value of Fitness for Survivors by David Haas

It's no secret that a cancer diagnosis is terrifying, but the good news is that there is life after cancer. Whether you've just received your diagnosis or are ten years into remission, it's important that you continue to live your life the way you want to. One way you can help deal with your cancer diagnosis is through regular physical exercise. Physical fitness not only helps you maintain a healthy body weight, build and maintain muscle, but it also can lower your blood pressure, help regulate your blood sugar levels, and reduce stress.

Whether you're dealing with mesothelioma, leukemia, ovarian, or another type of cancer, it's important to allow yourself to exercise as long as you're physically able to do so. According to Georgia State University, regular exercise can also help prevent other diseases, such as diabetes or heart disease.

Talk with your doctor before you begin to exercise, especially if you're still undergoing treatment or recently completed treatments for cancer. While fitness and exercise affords you many health benefits, you should never perform any type of exercise before you discuss it with your physician. Your doctor understands your health history and your current medical condition, and can offer you several ways that you can exercise in a careful, stress-free way that will be safe for you to do.

Understand that when you begin an exercise program, especially after cancer, you'll need to take things slow. Don't rush to the gym and begin to lift the heaviest weights you can. Instead, start slow and allow your body to work up to stronger exercises. Consider taking a yoga or ballroom dancing course, which is slower-paced and can help ease you into the idea of exercise. After awhile, you may find that you're progressing to Zumba or modern dance classes as your body and muscles grow stronger and more used to the physical activity.

As with anything, if you experience pain or discomfort, talk with your doctor. Your personal physician can recommend stretches and at-home treatment options for dealing with exercise aches and pains. While some tenderness after moderate exercise is to be expected, take care that you don't physically injure yourself when it's time to work out.

Saturday, October 8, 2011

The Tribe has Spoken

So every October as we all jump higher and higher to prove that we hate cancer, particularly breast, by buying products that are pink for the month, there's usually an article or two to discuss the term "survivor" as it is applied to cancer patients. We used to apply it to people who "beat" the disease, but lately I have seen it applied to those of us living with it as well.

I never understood why people objected to use of the word. I mean didn't people who fought the disease actually survive something. It's one of the few times that word actually applies (please, please tell me you've seen the episode of Curb your Enthusiasm when Colby keeps trying to compete with the Holocaust Survivor at dinner, it's hilarious) Also aren't we just trying to keep positive? Like when we say "cancer free", it's not technically true or at least there's no way to know if it's actually true, but it sounds awesome so we use it when someone's cancer can no longer be detected. I remember when my dad got his "cancer free" bill of health and I was so excited. And then my former friend (who shall remain nameless) said "he'll never be cancer free Jaime", not "that's great news" not "you must be so relieved". But she also decided to tell me how I caused my own miscarriages so why I expected comfort I'll never know. But that's why she's a former friend...

Anywho, if you are not familiar with this argument it is usually coming from people who have lost loved ones to the disease. Now it didn't bother me in the beginning because I gladly will call someone who beat the disease a survivor. And no one I know who has beaten it would ever think that they beat it because they were somehow superior to someone who did not. We patients don't even like to compare stages, let alone survival statistics.

Frankly, I used to think it was a petty argument, until you find yourself typing the words "lost their battle with ____ cancer" several times and then you realize it just doesn't sound right. They didn't lose, they fought like hell. Medicine lost, the doctors lost, the world lost, but not my friend. It does kind of imply that there is some responsibility on the part of the patient. It may not seem that way to some people (I never saw it that way before now), but after a while I can see how you start to feel resentful. It's like the stop smoking commercials in NYC. I love that NYC is using tough tactics to get people to stop smoking. I think tobacco companies are evil incarnate, they are the only product allowed in the US market that if used properly, will kill you.

But when you have lung cancer these commercials are like torture. First off it can feel like it's saying "well if you have lung cancer, don't come crying to me, you did it to yourself". Then there's the one that says "dying from smoking is never painless", um thanks. And now the new one, "the only thing worse than being diagnosed with lung cancer is having to tell your kids" with the young mother. That one makes me want to throw a shoe at my TV (I will not, because it's brand new, I should have thrown it at the old one, that might have made me feel better).

I just read an article (that I can't find to reproduce here) about a woman who is BRCA-1+, lost her mom and fought breast cancer herself. Her parents are also Holocaust survivors but her dad says "I was in concentration camp". She asked him why he chose those exact words and not "I was in a concentration camp" or "I am a holocaust survivor". And he responds, "because it was through no action of my own, it was just luck." He chooses his vocabulary to reflect that he is in no way alone in his suffering. The author uses the term "succumb to the disease" when she describes her mother's death. I think I like it better than "lost the battle". What does lose mean anyway? I know the people who are left behind have lost, they lost someone they loved. But what about us, the actual patient, what do we lose (yes I know you lose your life) but I mean what do we personally lose? Dignity? No. Strength? No. Courage? No.

Am I making any sense? I don't feel like I am. But I guess ultimately truth is it sucks no matter what vocabulary you use.

But I have to say one thing, even though it is a battle it hasn't felt much like one yet. In fact being a patient can feel rather passive, esp. when you are waiting rooms all the time. But after talking today with Laura, I think maybe making a shift to a battle mode is what is in order? We'll see. Of course I could really go for a nice nap too... ;)

Wednesday, October 5, 2011

"Since then 'tis centuries, and yet each Feels shorter than the day I first surmised the horses' heads Were toward eternity." or This Shit is Real

Because I could not stop for Death,
He kindly stopped for me;
The carriage held but just ourselves
And Immortality.

And Immortality.

Ok I didn't repeat the last line for effect. As hopefully many of you know most of Emily Dickinson's Poems can be sung to the melody of Gilligan's Island. I should be ashamed to admit this but that's what led me to discover that Dickinson is my favorite poet. Go ahead try it, it works on just about all of them. (I almost wrote go to the library and check her poems out, who the hell does that anymore besides me and my parents?) But I must say, besides enjoying her poems, Ms. Dickinson is the first person to ever get me to consider death, it actually wasn't the above poem that first got me, it was "I heard a fly before I died". The idea that hearing is the last sense to fade upon your death, it kinda stuck with me.

And then there was John Donne, Death Be Not Proud which I only discovered because I had to read the book of the same name by John Gunther. Gunther took Donne's poem about how Death has no "power" over man because of man's faith in god, and took it further to say that Pride is not in the death itself but what you do with the time you have left even when it's tough. He chronicles his young son's battle with brain cancer, his fight, and his and his wife's heartache with such honesty, it was a book that never left me. However there is a film that really blew my mind called Wit, by Mike Nichols, starring Emma Thomson, Audra McDonald and Christopher Lloyd. It is an HBO production that is based on the 1998 Pulitzer Prize Winning Play.

It explores the last days of a Univ. Professor of John Donne's poetry (Thomson) and her willingness to help in the fight and to contribute to the understanding of her cancer by allowing herself to be a guinea pig for a high profile doctor/scientist (Lloyd). However thru the painful side effects and the kindness of her nurse (McDonald), she soon starts to examine her own history of showing little compassion and valuing academics over the human condition. And finally she's confronted with having to chose to be a DNR or allow herself to be used to the death for science no matter how painful. It's truly an epic battle in her mind that she must come to terms with. But the most extraordinary moment of the film is when Her professor, her mentor comes to visit. The mentor realizes that she's arrived too late and comes now to comfort a friend in her final moments than to cheer up an old colleague under the weather. In that moment she chooses instead of reciting John Donne, she will instead read her former protege The Runaway Bunny, the book she purchased her great grandchild earlier that day. Because at that moment maternal comfort trumped all else.

So what is up with all this huh? Well death lately has been reminding me that it's in the wings. I'm not really sure if there's a reason for it necessarily, other than "that's life" I suppose. But I don't want to miss any messages either. So, you ask, how has death been nudging me? Well...

First it was the report about the new drug they discovered for the ALK gene mutation that looks absolutely amazing. (My doc says I was tested for it already, in case you're wondering, plus I have my own gene mutation and drug combo, so I'm super lucky, believe me). Now I've mentioned before that I've instituted a media blackout of sorts for myself. I haven't looked up anything lung cancer related in general terms, if I search the internet it's for specific things like "whole brain radiation side effects" or "tarceva skin rash" etc... The reason is because I know the stats for Stage IV lung cancer suck, esp. with brain mets. But I had made some assumptions about what those numbers might be and it turns out I was being rather optimistic. So I'm watching this report about the ALK drug and what flashes on the screen? A lovely little statistic: "Only 1% of Stage IV lung cancer patients are still alive in 5 years." I actually thought it was about 20%. John said that statistic is for ALK lung cancer patients, in general Stage IV lung Cancer patients have a 10% chance of being alive in 5 years. So I suppose that makes me feel 9% better.

But needless to say that number was jarring. I remember desperately wanting a number when I was at Sloan that day in January, and I'm so happy the young doctor didn't give me one. Cause I have to say that number ABC World News flashed blows. Now I have to say it didn't depress me as much as it shocked me. And I think it might have shocked me right out of bed. Cause not long after that I headed with my family to Hershey, PA and had some fun with my daughter. And I've been on a number of small trips since.

Then death nudged me again. At Hershey Park, we were waiting for Sophia to get on a ride that was for little ones her age. John was putting her in the car when I realized that guy running the ride kept looking at me. Now when you're a fat bald chick, you get LOTS of looks. Adults either give you a sorry "aww poor girl" frown or a smile that lets you know they are either a survivor or the relative of one. Teenagers are the cutest they try their best not to look and if they are behind the counter when you are buying something, you can almost see them saying "bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald" in their heads! Kids just flat out look much to their parents' horror. But it's cool, and if they ask I tell them I cut it, because I don't want them to be afraid that any medicine they take will make their hair fall out. They are afraid enough of docs as it is.

But this man kept looking at me, in an odd sort of way. Finally he came up to me and pointed to his chest to where my mediport scar is. And he said "you have a..." "mediport, yeah", "my wife had one. How is your fight going?" "Well it's going, but you know I'm doing ok, how's your wife?" And then he broke down. His wife died of Breast Cancer within the last year, I wish I could tell you more, but he was difficult to understand. All I know is my scar struck him and the poor thing started to cry. He asked if he could hug me and I just threw my arms around him. He had to get back to his job but he told me his name (which my radiation brain has since forgotten) in case I needed anything at the park and then he told me his wife's name was Jill. After the ride I went back to him and told him I'd take Jill with me to every treatment, to every apt., to every fund raiser. He hugged me again and thanked me for being kind to him. And then he asked if it was breast cancer and I told him no, lung. I think the bald head, the mediport and me being a woman, all together just hit him very hard and I conjured up his wife for him. His pain was so raw and awful I wished there was something I could do, but how do you comfort a young widower? I mean if this guy was over 45 I'd be surprised. It hit me and John pretty hard, but honestly my pain was really for him. My dad found the experience odd (he talked to him as well, and told him he had breast cancer too, but mostly he just wanted to know why this strange man was hugging his daughter). But we both felt that at that moment, we did the best we could for this man. We are a sucky community to be apart of, but we're a community and it is incumbent upon us to be there when one of us is in need, even if it's someone we'll never see again.

And then of course there was the passing of Madalyn. This wasn't death nudging me, this was death betraying me. The most overwhelming thought I had after being devastated for her daughters, was how could you take her! How! I felt nothing but anger at that moment, you can take that woman on World News Tonight or the wife of some guy I've never met, but Madalyn? How is that ok? Like the family of Jill and the woman on the news (who was a young mom like me) don't/didn't have those exact same questions.

As usual I have no idea where this is going. I guess the thing is I've contemplated my own death, we all have, but now I'm realizing there are things I don't have the answers for. Things I need to have the answers for. Like I don't really want to be buried, I think I want to be cremated, but I don't know if it's the buried thing or the embalmed thing that I object to. But I also thought I'd have a lot longer to think about it. I also realized that I'll have to lose weight, I can't be a fat bloated corpse, plus I've only looked good in one dress in my lifetime and that's my wedding dress. So I figure I have to lose weight about 60 lbs to look good at my own funeral. Does Weight Watchers have a plan for that? My Mother in-law, Mother and Husband don't like that joke. I think it's hilarious.

Also, do I keep my 401K or so should we cash it in and use it to go away and shit? I always said I wanted an open bar at my wake, now do I really? Do I want people to drink enough to be honest about me? And how do I pull it off? I should probably have this all in place so no one has to worry about the logistics right? The one thing all this death stuff has made me realize is, dying is the easy part. Worrying about that moment doesn't make any sense, I mean we all have to face it sooner or later. It's everyone who gets left behind, they have it hardest. If meeting that man in Hershey has taught me anything, it's that of everyone involved in this, I essentially get off the easiest.

So now I have to get other things in order too, letters to Sophia and other loved ones. But Sophia esp. I mean there are so many things she'll need me for, what if I don't get my miracle and I face those 1% odds, how do I let her know all the things I want her to? I think of that mom from Oprah in the 80's and 90's who died of breast cancer but made her daughter thousands of hours of video tapes so her daughter had all these words of wisdom and love when she was gone. I remember thinking that was so cheesy as a teenager, now I realize that is the most selfless gesture. I know this because the idea of writing Sophia a letter makes me physically ill, the idea of sitting in front of a Video camera, no way. I can't do it. Trust me this was a woman who loved her daughter. There's also some little ones who I'd like to do something for cause I hate the idea that they won't remember me.

How narcissistic is that? Worrying about who will and won't remember me? Look I am not depressed about this. Thrilled? No, but I'm not sitting here sobbing while I write or anything. It's just that death went from that thing I only confront on episodes of Bones and Law & Order, to thinking about it practically. I had been ignoring it for so long and then it smacked me around a bit. I'm not sure why. I mean it got me out of bed initially, but the rest of it, I don't know. Maybe it's like Quiqueg in Moby Dick, he can't relax until he makes out his Will and buys his coffin. Once those things are settled, he can just go about life again. So if I get the answers to these questions, will I put death back on the back burner?

I don't know, I just know death has been hanging around my head a bit and I know the people closest to me aren't happy about that. But I just don't think talking about the realities of this is the same as giving up on the idea of a miracle. Look the whole point of getting whole brain radiation, besides getting off of the steroid, is also to give me a shot at clinical trials. I know anything can happen, I know stage IV cancer survivors who beat the odds (even stage IV lung cancers). I am as positive as ever, I feel pretty darn good and I have been more myself these last 6 weeks than the entire 3 months of Summer combined. I've even been working out at the Y! But there's no denying there's been some nudging, I'm curious what I'll do in response. I'll keep ya posted.

Weird Dreams to Share

I began this Blog in June but abandoned it out of laziness. I'm going to leave the original opening paragraph. But to update you, the original steroid step down did not go as planned, and then I crashed and slept most of the Summer away. I have since gone back on the steroid (1/2 the dose I was taking most of the year) and it has really helped give me my brain and energy back. I will begin a new step down program but I'll be going off of it VERY slowly. Anyway, I hope you find this entry entertaining! Enjoy:

Ok so Monday is the last Radiation session AND the last day I take the steroid. I can't tell you how jazzed I am about these two facts. But I'm super duper jazzed about the steroid thing. So for one I can stop eating like a hobbit (breakfast, second breakfast, lunch, onesies...) and hopefully my face will tone down a bit (it's mad swollen!) I will miss the frantic to-do list making and the crazy urges I have to organize the hell out of my house! Seriously I found the cure for Hoarding, it's called dexamethasone. Why are doctors not using this? My house has never been in this kind of order before.

But one thing I will not miss is the insomnia and crazy ass dreams I've had. But you know now, I'm totally going to share some of the best ones with you.

1. Tom Hanks and I were spies, trying to sneak into Thomson/Reuters (which wasn't actually TR) and we failed to do our jobs properly. So our boss, George Clooney, fired Tom Hanks and teamed up with me. As we were trying to sneak back into the building George suggested that we get back together. I turned him down, I told him I was too fat for him, so you have to admit, I was only thinking of his career. Which is apparently movie star / spy boss.

Even in my dreams I'm fat, WTF?

2. I went to a club in NYC that allows you to do or witness ANYTHING you want and it was known for its intense experiences. And what horrible debauchery did the majority of the "people" in my subconscious want to do at this club? Yes you guessed it, watching Drew Carey design Pink Furniture. Is there nothing my dirty mind can't dream up?

3. We travelled thru the Tundra of Canada to get to Traverse City, MI (see footnote). When we got there my brother's girlfriend's parents had gotten into a car accident and tried to pin it on me and their daughter. Now they really aren't the type to get into an accident and then try to pin it on anyone, let alone their own daughter (or me, esp. since I don't drive, pinning it on my would be pretty stupid). But we tried to settle the whole thing at Cracker Barrel (naturally). And they were like, Ok we'll stop trying to blame you for the vehicular manslaughter. Woke up before I could order biscuits and gravy.

4. Dr. Dre and I were trying to find kids to join our Glee Club. If you need more set up than this for it to be funny, you clearly don't know me.

5. Freddy Kruger was giving me laundry tips that I could use on the Today Show since I was now the new co-host. I thought that was very nice of him. Now Freddy and I go way back. Nightmare on Elm Street is the first horror movie I ever saw (at my very first sleepover no less). And I couldn't sleep for about 16 years after seeing it (I so wish I was exaggerating! but I have no ability to watch or enjoy scary movies) So since I was a kid I had loads of nightmares starring him. Then when I was a preteen I read that if you have lots of nightmares you should try lucid dreaming. That means when you're in the middle of a bad dream try to tell yourself, hey this is just a dream I can change anything I want. Believe it or not it works. So when Freddy would try to attack me on the way home from I.S. 75, I'd turn around and be like "Dude, you're hanging out in Huguenot? Really? How fucking lame are you?" And now we trade recipes and laundry tips, isn't that lovely?

And finally:
Footnote: Traverse City, Michigan. Ok so when most couples do a destination wedding they choose Jamaica or Fiji or Las Vegas. Not our family, we do St. Mary's Pennsylvania or Virginia Beach. Paradise is overrated. But then there's Traverse City, MI. Beautiful city, breathtaking views of Lake Michigan AND fucking freezing in August. I remember when we pulled into the city and I saw people on the Lake I was like, yeah sweet. Then we got out of the car and I froze my balls off! Now the groom had warned us, so I was prepared clothing wise, just not emotionally. Why were those people on the Lake? Didn't they know they could die of exposure? Is Alaska this cold in August? Anyway for the record the Bride was stunning, the groom was adorable and I slept with both the DJ and a Groomsman! I'll let you puzzle that one out yourself...

Wednesday, September 28, 2011


I have another blog to write, but it'll be pretty intense (I think anyway) and I'm not ready to write it yet. But I'd be remiss if I posted it without having a brief post to honor and mourn the passing of my sister soldier Madalyn Castelucci. I mentioned her and her daughters previously. I went to school with Christine and Catherine. I had the pleasure of being good friends with Christine, who I met in freshmen year at Tottenville HS. I spent a lot of time at their house, it was such a joy to hang out there and John and I shared our first kiss at the New Year's Eve Party 1993.

When I first met her family Madalyn was going through a very difficult time and the last thing she needed was a house full of teenagers crowding her house and eating all her food. But we were always welcome and she always had smiles, hugs and kisses for us. No matter how hard she was working or what she was dealing with, she was the kindest most loving woman. It was not only like having a second mom but like having a second home. When I look at the photos we have from High school a TON of them are from Madalyn's house.

More recently we all reconnected thru Facebook and then at the Healing Masses at Our Lady Star of the Sea. I have such fun memories of Madalyn making faces at me during the funnier healing stories. Sharing our hatred of the mediport. And just the hugs and kisses in general. I think those were the I went to the Masses even when I was exhausted or nauseous from treatment or just didn't want to think I had cancer. Knowing she'd be there to make me smile and I would leave feeling invincible!

Madalyn lost her battle with Lung Cancer on Sept. 20, 2011, 8 months to the day after I was diagnosed. I don't say that to make this about me, it's just that Madalyn popped into my head the moment I was diagnosed. She kept me from losing my mind because I knew someone in the fight. I genuinely hoped we'd beat the odds and cross the finish line together. When John told me she was gone I looked at him like he was speaking a different language, what do you mean she's gone? She can't be gone!

She left this earth peacefully surrounded by her beautiful daughters. That brings me some comfort because two incredible women in my life have passed at home with their children by their side. But I'm still selfish and wish they were granted more time. But we're given what we're given and we can't appeal.

So here's to my sister soldier, I will take you with me to every treatment, I will wake up with you in my heart every morning, and I will continue to fight for both of us. I don't really know what else to do.

Wednesday, September 21, 2011

Yeah it's been a while...

Ok so I basically slept the Summer away. I didn't mean to, it sorta just happened. So I had radiation until June 13ish, not really sure of the last day exactly but I know my last steroid was June 24. I was pretty tired throughout radiation but Dr. Chan felt it was likely from the commute and steroid sleep disruptions, he was right. Because radiation tired didn't start until July, and people there is nothing in the world like radiation tired. Nothing. I have talked to people who went to work thru it all and I am in awe. Radiation kicked my ass and kicked it good. I slept for about 2 months straight, I didn't want to eat (yeah I know right!), I never needed to go to the bathroom, had zero desire for anything but sleep. And the sleep felt SO good. I don't know if it was the rest or the hibernation effect, but I hated being woken up. It created for quite a few standoffs with my family. For lots of reasons.
For one I think they genuinely didn't want to me to miss the entire Summer (which I did anyway) but I also think it was that this was the first time I looked like a cancer patient. I was bald and in bed and never got up. I imagine for them it was scary, but for me it was peaceful. That is until my mother would grab me by the ankles and drag my ass out of bed (which incidentally is how she used to get me out of bed as a teenager.) And I slept, I didn't just lay there or hide, I mean deep wonderful sleep. It felt amazing, but looking back I'm slightly embarrassed.
Now I know this was a side effect and I shouldn't technically feel shame for it, but the more I think about it the more I realize it wasn't just the side effect of radiation. I think there was a touch of agoraphobia too. Again when I say shame, I don't mean it literally, I know it's ok to feel what I felt. But I wish I had just recognized it instead of resisting looking at what was going on. I was just so resentful because I wanted to retreat into myself for a while and I didn't like being made to feel bad about that. But I know that isn't what my family was trying to do, they were concerned that I wasn't eating enough and that I might be falling into a depression.
Truth is I think a lot of it too was just not wanting to have to tough something out again. I toughed out chemo, I toughed out hospital stays, blood clot scares, a brain bleed, but this exhaustion...I just wanted to wallow in it. Enjoy the idea of having no responsibilities, feeling like I finally was getting rest.
John kept in touch with my oncologist and he became concerned. So I was sent for a blood tests to, among other things, see if my thyroid was functioning ok. I secretly wanted it to come back saying it was not working well so I could say "See, told you I didn't feel well! I'm tired for a reason!" But everything came back normal (except for my albumen which was a little low, so apparently I'd make a pretty crappy hard boiled egg). Then Dr. Krug insisted I go back on the steroid, I was furious! I didn't want to go back on it, I gained 30 lbs on it and my face changed too much. But by this point (mid-August) I had slept the entire Summer away, missed a million opportunities to go away with my husband and daughter, and missed the big summer of Amusement Parks that we had planned. So I reluctantly agreed to go back on it.
After a couple of weeks I feel like a new person. It killed me that the steroid worked, cause I really wanted to beat the exhaustion myself, but it simply wasn't happening. So I have to thank Dr. Krug and John for salvaging what was left of the Summer and for helping me feel like myself. Now I have to ween off of it again, but we have a plan to do it over two months. Dr. Krug kindly gave me leeway to do it on my schedule, with his guidelines. I appreciated that. So this coming Monday I'll step down from 2MG to 1MG. And then I'll step down to 0.5 MG. I actually think it'll work. I feel better and better each day.
On the other hand I can def feel a difference in my brain. I have trouble piecing together what people are saying sometimes and it takes me a minute to catch on to what the conversation is about. And if you don't give me explicit instructions now, you do it at your own peril.
There's another part to this new energy I'm feeling, that I'll explore in the next blog. I put that blog together in my head a while ago, but I can't bring myself to write it down right now, it became way too real recently. So it's just not the time for it yet.
As for updates, I had a CT scan this month, the first since June. I didn't expect to hear anything except for an update on the pesky blood clot, esp. since we haven't seen a change in any tumors since March 9th. So when Dr. Krug said, "Hey your scans look great, you've got some tumors that are shrinking, the one in the liver and the larger one in your right lung (the one that started it all, I call her Queen Momma Oddy). " The clot shrunk a little bit too. I was so stoked, I had NO expectations and instead I got great news. So the Tarceva is not only keeping things in check but it's working a little Overtime too! Monday was a great day. And then there was Tues.
Nothing good every happens on a Tuesday.

Wednesday, June 22, 2011

The Bravery Thing

So last night I was in bed thinking about when people say to me "You're so brave" and I was feeling like, "Gee, I don't feel brave." So I started to really mull it over. Most of the people who say that are people who have never had cancer or any other major illness (thankfully, and I hope all my lovies remain that way!!!) And I think I know why that is...

But there's another side to this too. The other cancer warriors out there, we are all very funny about the bravery thing. Like we never think in terms of stages, I mean if we hear someone is newly diagnosed we of course want them to be diagnosed early. BUT we don't think in terms of, "well you're Stage 1, Ha! That ain't nuthin!" Because being diagnosed with any illness, but cancer especially, is just plain devastating! And it affects you in so many ways, physically, mentally, emotionally, spiritually. It can paralyze you, depress you, hell it can hurt like a son of a bitch!

But I do notice that when we warriors hear about someone who went thru a longer treatment, or a more intense regimen or a surgery that we didn't have to have, we always think, "Now there's a warrior!" I said that to a friend Joseph, who I went to school with from 5th-12th grade, who went through 60 brain radiation treatments last year. I only had 14, by treatment 7, I was so happy to be halfway thru I considered dancing on the machine! Also my ears are so blistered that I can only imagine that by treatment 40 Joe's ears just burst flames. So I told him how struck I was by his toughness and he wrote back most eloquently "i'm no different than anyone else in the struggle. I refused to let it interfere in my life."

So I've figured it out, why we don't feel brave or special or tough... It's because we really have no choice in the matter, if you know what I mean. A firefighter, a police officer, a soldier, they have a choice. Their uniform doesn't physically compel them to enter a burning building or jump into a fire fight. They choose to do it. That my friends is brave! People who stand up for the right thing when everyone else is against them, that's brave.

When you're told you'll never be cancer free but we can "extend you're life", the "choice" to fight like hell isn't brave, it's logical. Like hell yeah I'm taking chemo, can we double it? What if I yell at the cancer will that help? Does Sloan have any Voodoo priestesses on payroll? I have a daughter who needs me, I have a husband I love and can't balance a damn check book and can barely boil water, they'll starve without me!

I didn't even think, I just put one foot in front of the other. And the truth is, if god forbid you find yourself in this position, you will too. It's a survival instinct, it's that part of you that will yell, hell no I won't go! It's there, we probably use it all the time without even realizing it.

As for the sense of humor thing, look, I'm already sick, why be depressed as well? You'll be surprised at the fact that you can laugh about stuff, but you can. Go to Cafe Press and type in "chemo" or "cancer" and see all the t-shirts that people created. Cancer patients, who said, fuck it, I need to laugh. Mel Brooks was once asked by 60 minutes why he made so many movies that feature Hitler. And he said it was because during the war he hated him so much he wanted to have some sort of revenge on him and he realized the best revenge was to get people to laugh at the muthafucker! I think that's genius!

Sunday, June 19, 2011

Who loves ya baby

Well washing behind my ears has never been so easy. And you don't realize how much your hair keeps the water from the shower from flooding into your ears until you have none.

So I've been waiting FOREVER to lose my hair. The Sloan chemo nurses said it would most likely just thin from the Cispatin (the 1 hour, kidney drowning, ovary frying chemo drip) but I had read all over the internet about people who lost their hair from it, so I chopped it off in Jan just waiting and waiting and waiting. And it never fell out (not that I'm complaining), so I psyched myself up months earlier than I needed to.

When I went for my first radiation consultation they said, it's not a matter of if, just when, they felt by the end of the 2nd or 3rd week it would start to fall out. They were dead on, by the middle of the 3rd week my hair started really thinning and if I wore a white shirt, I also wore my hair follicles for the world to see. And then Wed. June 8th, I was having my morning bowl of Kashi Go Lean Crunch before heading to the Sloan cafeteria for second breakfast. And I got a spoon full of hair, yum! And in the car on the way to Sloan every time I ran my fingers thru my hair huge chunks came out.

So on the way home from radiation that day, we stopped to pick up Sophia at my in-laws and we were talking and laughing. Then we head home, and while I'm sitting on my love seat sitting in front of my facebook page, I run my hand thru my hair and an ENORMOUS chunk pops out. And I say, I guess this is it.

So my dad says, well that's what I did, I just pulled it out. I said really? For some reason that sounded like fun. Apparently I was the only one who felt that way, Dad went home, Mom took Sophia into the Den to watch Madagascar and John was like, you are not going into the bathroom to rip out your hair. At first I was like "oh ok" and then I said "WTF, it's my fucking head, if I wanna rip the hair out I will dammit!" So I went into the bathroom, took the trash bin and put it in the sink and I went to town.

First of all you have to understand, the hair literally popped out. No pain, no tugging, I just grabbed a chunk, tugged and it came out. Now the bulk of it fell out on the very top of my head. Kinda like a Monk's do. But the hair along my forehead line and along my ears and neck would not budge. So I had a bald middle which was SO attractive. But it was oddly liberating. Especially since it was crazy hot that day, my head was literally cooling off as I tugged. Then after about 20 mins, all the hair that was coming out was out and I was left with a spikey ring around my head. If you can imagine those hats they sell with fake hair around the rim, imagine that without the hat and that's what my head looked like.

So I grabbed John's buzzer and took the rest off. So it looked very crew cuttish. And then I had to show Sophia. I didn't know what to expect, but they nurse told us to tell her that I got a hair cut. So I said, "Sophia you want to see mommy's new haircut? I have no hair now." And she was totally cool with it. She asked me if it came out in the shower and I told her no, that mommy cut it (I didn't want her to fear the shower and worry her hair would "fall out") and that was it. She rubbed my head and went back to watching her movie.

Then I took pics and posted them on Facebook. My poor mother-in-law was so confused, she called and said "you were just here, what happened?!".

But I still looked more of Marine than a cancer patient, honestly, I looked like I could start some serious shit. The only thing I'm missing are visible tattoos. And I think I might have freaked out my backyard neighbors (everyone on my block knows about me and they have all been wonderful, I have some pretty cool neighbors yo!). But the week before I had run into my neighbor in the back and we were talking about our kids and stuff. Then a week later I go out to put out the trash, at maybe 4pm, and she is in her backyard and says "I hope we're not making too much noise back here?" I was like "Huh?" and she said "The kids are making water balloons." and I said "Sounds like a great time to me!" So I wonder if she was like, I hope that skinhead doesn't attack my children! HA!

I got tired of the roughness of the fuzz, and I took out my venus razor a few days later and shaved it. My scalp reminded me of when we pet those stingrays on our honeymoon. Smooth and Velvety. Seriously, I could not stop rubbing it. I am obsessed with my head. It's so freeing. Between scarves, wigs and plain ass bald, I like being bald the best. I feel cooler (temp wise, not attitude wise) and my head has an interesting shape. I do wear scarves when I'm out though. I feel like being bald is very jarring for people and it is now the same as wearing a sign that says "I have cancer". So I mostly wear it for other people. But I do love scarves too, it's just that after a while they get hot and I usually pull em off.

I've worn two of my wigs so far. We went out to dinner for John's birthday and I wore my good one that the American Cancer Society very generously gave me. BTW that was awesome. I met my dad's ACS peeps (he's an ACS navigator) and his friend Fran took us downstairs at their HQ, took out a mirror and a huge bin of wigs. And we tried a dozen on, it was SO cool. We figured out which color I looked best in and which style. Plus Fran was ACE at styling them so I learned so much about how to care for them and how to make them look perfect!

Today I took my pink one out for a whirl. I got quite a few looks on the drive to my Brother-in-Law's. It was cute, but got itchy after a while and I just yanked it off. But I lasted pretty long in it. Plus I ordered one of those cotton caps that they recommend for patients to wear underneath, but I haven't received them yet. So I think I'll get more into the wig thing soon.

What I love about scarves though is they have kind of a pirate vibe to then, which I totally love!
The best way to describe not having hair is, most of the time you don't feel any different, but then you turn on the AC or you feel a nice breeze and it feels like your hair is sopping wet and it's Feb. Sometimes I'll have what I call, "hair phantom pains", where I find myself trying to tuck non-existent hair locks behind my ears.

The other crazy thing is that the steroid (which I'm still on, I was supposed to stop it cold turkey the last day of radiation but I got a massive headache so the doc decided we should step down even slower, they had thought I had stepped down enough since I was down to 2mg, but apparently that wasn't enough for me). Anyway, the steroid causes you to grow hair where women don't usually enjoy growing hair, like your chin or neck. But the steroid did me one better, it also grew on my nose and from the corner of my eye down my cheek. Like how is that even normal, men do not have hairlines from their fricken eyes!!! And then there was the cisplatin, it did nothing to my head, BUT it kept the hair on my legs from growing. So I didn't have to shave the entire time I was on chemo. Which was crazy cool, but the rest of me looked like Robin Williams ala The Fisher King.

So that's the deal with the hair. I'm surprisingly cool with it. I will photograph all the wigs and post them on facebook eventually. Plus I have a whole new scarf collection thanks to my cousin Cindy who dropped off all of her headwraps, that she washed in the most divine smelling detergent! I literally just inhale the pile of them whenever I pass them in my bedroom.

On a side note I went to Essentials in the Mall the other day to pick up hair gel for John and a new brush for my wigs. And I swear the teenager at the counter, who was lovely, was thinking to herself "She knows she has no hair right?"

Also I have this really bizarre habit that when I play Uno on the iPad I have to rub my head before I made my move. I really have no idea why that is...

P.S. John just read this over and insists he did not freak out over me pulling out my hair. He also wants everyone to know that he thinks it was very nice of him to help me shave the back of my neck. To which I responded, yes, you are a true humanitarian. Now he hates me. Hehe!

Tuesday, June 7, 2011

Healing Mass or Peeing thru the Power of Christ

Ok so I've been putting off this post for a very long time. Only because it's going to be heavy on the religion talk and also because I don't want to offend anyone with my perspective. But hang in there, there are some damn funny moments. But let me lay some ground rules. Firstly it is never my intention to impose my beliefs on anyone, they are mine, they are silly, I love 'em, but like I said they are just mine. I also respect everyone's position on religion, love it, hate it, I get it. And I expect a couple of people will be reading about some of these things and think they are hokey or nonsense or whatever. And that's cool too, we all believe what we believe. But I'm going to explain things from my perspective so just take it for what it is.

Ok so back in February my mother asked if I would go to a healing mass at her catholic church. Now let me explain my parents to you, they are what I call "Super Catholic". They go to church every Sunday, they know every hymn, they have church friends, my mom is a Eucharistic Minister (the people that dress in robes and hand out the host or the wine) and they go to bible classes all the time. They give their priests rides to places, they go to functions, they are totally into this whole Catholic thing. BUT you'd never know it unless you were related to them. They aren't preachy, Christ doesn't come up in every conversation, unless we're talking about how Don Brown totally stole his ideas from Holy Blood, Holy Grail. They can easily discuss any religion without ever disparaging another and as I once famously told my dorm mates at Rider, my mother wouldn't care if I sacrificed goats in the backyard as long as I cleaned the deck when I was done (for the record I have never sacrificed anything, except maybe some virgins...).

My mother does occasionally ask me about things like demons or Ouija boards because they'll have a sermon on it and she seems to think I have some kind of perspective on this. Now I don't believe in either so to participate in these conversations I usually have to quote films like Poltergeist. But other than not building your house on an ancient Indian burial ground, I really have no additional information. Also my mom does like to hide palms in my house. Which is really funny cause I have no idea how she does it. I just know that I'll pull out a pocketbook from the closet and get hit in the head with them, or find them under my mattress. For some reason right now they are on the floor of my basement, which is a little baffling. But really, it's endearing.

Anyway, so she asked me to go and I said yes. Look if it was my daughter's brain that woman was drawing a picture of and placing dots on, I'd burn so much fucking sage my neighbors would have to call the fire department. So it was an easy decision. Now I expected to go once to make mom feel better, I ended up having quite an experience and I now go to all of them.

The first surprise was that my mom had no intention of going with me, yeah I was totally like WTF? Apparently this is the one Catholic thing she isn't that into. But Dad came with me, he went to a couple when he was battling breast cancer (a fact I did not know). He tells me that after the mass you go up to the "healers" and you are expected to fall on the floor. He feels it's a bit gimmicky. Truth is I'm a pagan, if there's anything we excel at it's gimmicky. So I'm OK with it but I am half expecting some revival meeting shit. I'm happy to report, it's not like that at all.

The very first thing I notice is the sense of community, there is something oddly comforting about being surrounded by people who are in the same boat as you. I wish they weren't but such is life, so if we're gonna get sick, we may as well huddle together and bond! So the mass is slightly shorter than the Sunday Mass but the same basic rituals. And then instead of a Homily, Monsignor Jeff explains how the Healing portion of the Mass works.

Monsignor Jeff is a recovering alcoholic, he's been sober for years but he speaks about his struggles openly and honestly, there's no infallibility with this man, I like that a lot. He talks about the different kinds of healing people come seeking, physical, mental and spiritual and how important each is to the individual. But then he addresses the "falling". And he says something that makes my pagan heart all a flutter! He explains that the falling is symbolic of surrendering. There's no hocus pocus, there's no one with crutches being touched by a healer and then magically walking on their own. The "falling" is something you allow yourself to do, nothing more. Now we pagans are all about symbolism, so this is totally speaking to me.

Then Monsignor Jeff says "it's really symbolic of surrendering your life over to Christ". And well that's when Jesus and I have to have a little talk. You see I was there as a guest and I had complete respect for and belief in the power of this process. However I'm happy being a pagan, so I won't be converting to Catholicism. So we start to talking. Now when you're a pagan or wiccan you choose your own pantheon. Meaning you choose the god/s and/or goddess/es you want to worship. The reason is that ultimately we believe that we personify the powers that be in our own form and each deity has traits that speak to us. But when I say you can choose, I mean you can really choose. As in you have endless possibilities. So believe it or not you can choose to worship Isis, Pan, Athena, Jesus, etc... The difference is, we assign them all a small "g", meaning we think they are all equal. So talking to Jesus is not really out of my comfort zone persay.

I thank him for allowing me to participate in the healing mass and that I totally respect it. Now we pagans have a bunch of rules, among them are you can't just ask for something and expect it to materialize. Quite frankly you can ask for something, follow all the rules and still never see it materialize, that's called life my friends. But anywho, if you ask the universe or the gods for something you have to be serious. For example if you need a job, you can't just light a few candles and expect Donald Trump at your door, you have to get yourself out there, hit the pavement and put out that resume. You also can't treat the universe like an ATM machine and just ask for shit all the time. You have to balance out your requests, show the world you are grateful for what you already have.

So I promise Jesus I'll figure out how to balance the mass. And since by this point my head hasn't started spinning and no lightening bolts have hit my ass, I'm pretty sure Jesus is cool with it. Ultimately I balanced it out with two things. I give monthly to St. Jude's children's hospital, for one thing that one is a no brainer and two St. Jude is the Saint of healing, so I thought that one was a slam dunk. And I have decided to include Jesus in my morning meditations with the goddess Ostara. I think it's only fair that I honor them both for all of my blessings, but I also like to think they have interesting conversations when I'm not around.

Jesus: Hey there, what's your name?
Ostara: It's Ostara. Interesting factoid, they derived the word Easter from my name.
Jesus: SHUT UP! Easter is totally my holiday!
Ostara: Yup, I know, I know. But you have to admit it's pretty funny that no one has figured out that all those chocolate bunnies and eggs represent fertility huh?
Jesus: Yeah that really is amusing, but chocolate crucifixes really would be kinda icky.
Ostara: Well you got me there. Hey what's up with Christians always giving you a 70's aesthetic?
Jesus: I know I'm either forlorn on the cross or there's a painting that looks like a head shot circa 1976. But you have to admit, my hair is really fabulous.
Ostara: Oh totally!

So once I worked out the particulars, I was ready for the healing. So after the Mass portion, Monsignor Jeff leaves the altar and then returns and meets with the healing teams at the front of the congregation. They gather in a circle and hold hands (sorry Catholics but this is so awesomely pagan that I'm practically floating off of my seat!) and then they break off into three teams. I choose the same team at my friends, the Bottiglias who I spoke of a few blogs ago, the woman clan that I love so much. And what I love is that one of the healers has a total Stevie Nicks vibe to her.

It's a rather magical experience and my friends' mom Madelyn (my sister soldier) asked if she could come up with me and I was a sobbing mess! I explained to the healing team that I had Stage 4 lung cancer, which was about 3 weeks after I was diagnosed and I have to say that was not easy to verbalize. They put their hands on me, said prayers and, when I was ready, I was lowered to the ground by Matthew. Matthew was John's student and was on my brother's swim team when they were kids. Poor Matthew has to lower all 200+ lbs of me and does it as gently as possible. I should really pay for his physical therapy. Anyway, I took in the peace of the moment and then looked up and saw my dad, husband and friends ready to help me off the floor. It was a crazy powerful moment!

I've been to four so far and the highlight of the Mass is really the testimonials. It's just nice to hear people talk about overcoming illness or escaping a bad relationship. People talk about battling addiction, fighting cancer, recovering from grief. You applaud everyone's successes and you never get tired of hearing stories that have happy endings. And then there was the last mass.

The first testimonial of the night was an older woman who starts off by saying she was sick and the doctors didn't know what was wrong with her. So we are all holding on to see how this turns out...oh my. So she says that they put a Foley catheter into her bladder and her bladder hurt like hell. The nurse says to her "well your bladder is mad at you cause you have a Foley in there." They send her home. She tells us that her sister came over. And then she called her daughter to come over. Then she called her other daughter to come over, that daughter (apparently the only reliable member of her family) takes her back to the hospital and gets her to see a urologist. The Doctor tells her "I will take out the Foley but I will do nothing more until you come see me in my office on Monday". I can only suppose this happened at SIUH cause seriously, who are these dumb fucks taking care of this woman?

So her daughter prays over her bladder. She gets the urge to pee, but is too afraid to use the bathroom. Now at this point I finally realize, this is not a story about baffled doctors who couldn't help her and then suddenly they figured it out. Nope, this is the story about how Jesus helped her pee. I look up and I see my dad and Laura, who are in front of me, looking down, laughing. I look around the church and everyone is trying desperately not to laugh out loud. And then suddenly I realize how this story is going to end.

So her daughter tells her, mom don't be afraid, just go into the bathroom and try. She says no, but her daughter urges her to try. So she goes into the bathroom and she says "and after 4 days by the power of Christ I urinated!" The entire congregation erupted in applause. And then she said it a couple of more times which only made us applaud more, until finally someone had the presence of mind to take the microphone away from her.

Christine looks at me and says "how did you not laugh?" And I was like "because I kept hoping this wasn't really about peeing, by the time I realized it was, it was too late, my brain short circuited!" And then Christine says "If you don't blog about this, I will kill you!"

So Laura and I have discussed this at length because we are riddled with guilt over it, but Laura made an excellent point. We weren't laughing at her pain, it was the dramatic flair of her story. And the fact that she kept telling us things that weren't important, like I still don't know why she called her sister and other daughter. What the hell did they do? Taunt her with a running faucet? And then of course there was the fact that she just wasn't in on the joke. She could have told it and been in on it, we could have all laughed together and we would have genuinely applauded that she found her healing. But instead she just kept going and going with endless details and this overwhelming sense of doom. I'm telling you this story went on for close to 10 minutes. I'm pretty sure even Monsignor Jeff was baffled.

On a side note, at the second Mass I attended in March, Monsignor Jeff told a story about someone who wasn't Christian who received healing from a Healing Mass, because "he may not have believed in Jesus but Jesus believed in him." I kinda took that as a sign that Jesus and I were cool. So anyway that's the Healing Mass, all in all it's pretty wonderful experience. It's a time for bonding, sharing experiences, hugs, kisses and hope. And I would like to take this opportunity to thank Jesus for all my worry free peeing experiences. I owe you one buddy!

Sunday, June 5, 2011

Ode to the Sloan Robe

Oh Sloan Robe, sear sucker and periwinkle blue.
You no doubt once were soft and bluer,
But after so many washes you're kinda rough,
And not quite so periwinkle, just a dull blueish now.
Sometimes you are big enough to cover my huge ass,
Sometimes you are so small I worry that my big ole low boobs will swing out and traumatize my father.
I'm so glad I always get to wear pants with you, or everyone in my general area would have PTSD from seeing my thighs.
I love when I am in a waiting room with other patients, we all kinda look like we're in One Flew Over the Cuckoos Nest.
I keep waiting for a Native American to throw a water fountain through a wall and set us all free.
But at least the nurses are nicer than Nurse Ratched.
Oh Sloan Robe, I bet Sloan pays a fortune for you.
I oddly love you.

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!