Quick Update - Clinical Trial

So first off all the previously recognized tumors in the chest and abdonmen are stable. The problem is there are two lymphnodes that are growing and they haven't stopped. So that indicates I'm at the beginning stages of Tarceva resistance. So Dr. Krug said I can wait two more months to see if they keep growing or I can choose a course of action. But I really like that he put it in my hands.

So before anyone worries, here's the deal, the growth is not enough to warrant chemo or radiation. The way Krug explained it when u are on Tarceva, regrowth happens so slowly it's hard to know when to pull the trigger on additional treatment, but he felt comfortable to let another 2 months go and another cat scan before def taking action.

But there's a clinical trial that will add another drug (IV, every 2 weeks) to Tarceva to get it going again. I will not be randomized because I'm in the cancer regrowth catagory so I WILL receive the new drug.

Also I have a lot of fluid in my lungs (probably treatment related), which is why I'm tired and out of breath so much lately. So I will be getting that drained. That'll help me with how I'm feeling physically.

There is only one x-factor in all of this, my next brain scan (June 7) has to be stable. If not, I have to treat anything that is unstable and then reapply to the study.

As for how I'm feeling, at the moment I feel ok. I was prepared for worse to be honest. The way I'm looking at this is, we see a small change on the scan and we want to nip it in the bud before it becomes a problem.

Pink Goo Haiku

Raspberry flavored?
You taste like crap on a stick.
Yikes, I have to PEE!


(pink goo is what I drink for my cat scans)

I got moves like Jagger

I'm sorry, but Adam how can I take Maroon 5 seriously with a song like that? I know everyone loves it but I think it's ridiculous. First of all, Jagger technically doesn't have any moves. He learned how to dance from Tina Turner (a goddess among goddesses in my book, but I digress). Secondly, have you actually seen his moves? He looks like a neuropathy patient with epilepsy.

Take a gander: http://www.youtube.com/watch?v=7y-x2fWKbmo

And finally, look I know the man is talented and a music pioneer. But when the hell was it decided that he was sexy or at least STILL sexy? The man has had sex with anything with a pulse for 50+ years. And he treated his wife like crap (though I have to admit, wtf did she expect?) I don't get why anyone finds man whores attractive, with one glaring exception. Tommy Lee, yes he is a disgusting walking petri dish, but he's hot and is hung like a sperm whale. So feel free to fantasize away, I just wouldn't recommend seeking him out for a real life experience however. Unless of course you have a sexy Hazmat suit.

WTF is this about? How the hell should I know, I just write this thing, I never promised coherence.

So I was going to air all my dirty laundry about the last two weeks and how much they suck. And how much I want to strangle a certain someone. But I'm keeping most of it to myself, well except for this: I have to be the only cancer patient, who after a day of vomiting and pre-op testing, who can ask her husband if she can take a 10 min nap before dinner and be told "no". Now I know what you're thinking how is that even possible? I did too. So I attempted to nap in protest and the SOB kept waking me up every time I nodded off. Why? Because he thought it was important that I eat first. I told you I hurled my guts up already right? But he got his way and I ate my meatloaf angerly whilst falling asleep. Yes I know only a woman could achieve an eating emotion.

But no, I will take the high road and instead discuss my sex life (feel free to run away in horror, but stick around I might be funny). Now I know you're wondering why I had pre-op testing today. Well I'm having a minor, unnecessary, GYN, not cancer related, had no intention of discussing it here procedure on Friday. That is until my husband called me from work this afternoon and said the secretaries in the Dean's office are concerned you're taking an unnecessary risk to your health. I was like, "they what?" But I'm SO unreasonable when I'm angry.

Yeah so it's official no part of my life is private anymore. So to fill you in on the things that I had foolishly decided not to share previously, here you go. My menstrual cycle is still regular, according to my OB/GYN I'm still fertile (actually I posted that one on Facebook), I've actually read the Story of O, and I have seen How Stella Got Her Groove Back about 48 times, because Taye Diggs keeps showering and I keep watching... And I like Pina Coladas and getting caught in the rain, I AM into Yoga and they fried half my brain.

There you go my complete profile. Oh wait AND I'm getting an IUD placed on Friday. There I have nothing left. Why am I doing this. Well I can't be on hormonal contraceptives anymore thanks to Cletus (my blood clot). So I need a reliable, non-hormonal way to keep from getting knocked up. Because despite chemo's best effort, I still can get pregnant and I'm on Tarceva which would just be disastrous. So my OB/GYN and I decided on this method.

Now this led to a very uncomfortable exchange with my mother in law, that I kinda find hilarious. She and I have become closer in the last year and it's been really wonderful. Unfortunately for her it means I now tell her things I never would have before, like "oh by the way I'm having an IUD placed to prevent anymore grandchildren springing from my end." Amanda and Steven are going to have to make up the difference I'm afraid. But my nephew is the cutest so they should really make a million babies! But again I digress.

So my mother in law, concerned for my health and safety says. "Well why doesn't John take care of it?" And she asks this in such a way that I assume she means a vasectomy. So I say "Well because that wouldn't be fair. If I die, what if he and his new wife want children?" To which she said, "I was talking about condoms Jaime." And I said "Oh right..."

Come on that conversation is classic! I should submit it to OverheardinNewYork.com.

And in case you're asking that same question yourself, refer to the Sophia blog and my two major preggo scares. Guess what we used?

So today I had my pre-op testing. Some blood and an EKG, I could have done that blindfolded, standing on my head (NOT a reference to my aforementioned sex life). One nurse said that I would likely have general anesthesia (which I've never had) but then the nurse practitioner said later on that it would likely be just sedation (which I've had 3 times so far). But now John is freaked out and instead of putting me at ease, he's instead freaked me out too.

Now to be honest, between that and the nap, the IUD is quickly becoming REALLY unnecessary. However if Jason Statham ever decides he's into bald, fat chicks, I'd like to be prepared.

So I don't know what to do. Though I guess I should discuss it with the secretaries in the Dean's office. I was totally cool with this decision until John started pacing back and forth outside the doorway, mouthing about how he hates that I'm doing this while I am having blood drained from me. And now it's 2:39 AM and I'm sharing all the gory details with you. (He's going to kill me for this blog BTW, if I'm not on Facebook tomorrow, call the authorities.)

I'm just angry and I'm blogging angry. Which probably isn't fair, but neither was telling the secretaries about what is going on with my cervix. The man didn't tell his coworkers I was pregnant until two weeks before I delivered, but this needed to be shared.

Ugh, so here is my first passive aggressive post. I'll probably regret it when it's not 3AM anymore, but I hope you got a good laugh.

Oh and one more thing, I have a lot of trouble saying IUD. Why? Because at work we had these things called UIDs which were important and we dealt with them 100 times a day. So when I pause to say IUD so that I say it correctly, the nurses look at me like I'm Forrest Gump. I swear they are thinking "Are you having trouble spelling that honey?"

Ok I'm going to publish this before I am in my right mind so you can enjoy it until John makes me take it down! ;)

I have some scans coming up next month, I'll fill y'all in. Until then, hope you had a better Valentine's Day than I did. Love you!!!

I'm fine, I'm just dying is all

Tomorrow (1/20) is the first anniversary of my diagnosis, as my Mother in Law said today "a date none of us will ever forget". So I guess this is New Cancer Eve or something. So I've had this blog that I've been sitting on for weeks, it's one of those that I don't feel 100% comfortable with. But here goes:

I can't explain how I feel right now. Which is funny cause I'm going to blog about it so I guess I can, or at least I'm going to attempt it. This is going to be one of those "doesn't make any sense" blogs, where I'm just going to write what's been in my messed up mind and leave everyone who reads this to scratch their pretty little heads.

It's been strange talking about myself and how I'm doing lately. Not because it makes me uncomfortable, cause it doesn't (have you read the blog? I'll tell ya every time I poop if you'd like, I have very few boundaries). But there's an assumed optimism that some people have when they talk to me that I don't quite share.

Not with my immediate family, they know the deal. It's unspoken, but we all know the odds. No point in talking about them or bringing them up, it's just depressing and I still don't really feel "sick" per say, so why bother. And my friends get it, probably anyone who has read this blog gets it.

But when I talk to some people, I can almost sense they are waiting for the tumors to go away. I mean you expect that from someone you've just met or someone who is simply an acquaintance. But there are some people who just don't seem to "get it" And I know they are thinking this way because that's kinda how I felt when I would talk to people I knew who were diagnosed before my own journey. I never realized how irritating that must have been.

And they don't mean anything by it, they just want the person they care about to get better. And I'm not talking about when people tell you they are praying for you or telling you to keep up the positivity, that's cool. It's that sense that one day this will all be over. And as much as I hope that will be the case, I'm not stupid, I know my chances of that happening are in the single digits. And I think my problem is I can't tell if these people don't want to acknowledge that fact for fear of being negative or do they really not know?

I guess I can understand, but for some reason lately it's sorta stuck in my brain. And I actually wonder if it's because I feel so "not sick". Like it's almost as though I have to keep putting it into perspective for myself. And the reason I keep saying "not sick" versus feeling "good" is because I still have bad side effect days, but that's all treatment related. I haven't had any cancer symptoms since the cough stopped. And I don't really have any feeling of the blood clot, most of the time I forget it's there.

I wonder however if this need for people to understand the gravity of this is a genuine need of mine or am I just feeling sorry for myself? I find I've had a shorter fuse about things lately. Like when someone has something they need to deal with and just won't go to the doc out of laziness, all I think about are the cat scans where I have to drink the red goo and I'll get all pissy. Like I want to shake them and be like, "really? I wish I just had to go for just a checkup, but no I have to monitor my tumors, but I can see how going to the doc to get a simple blood test would be so stressful for you!" Which is ironic considering ignoring an issue I needed to go to the doctor for is what got me in this predicament in the first place.

I'm hoping this is just a phase cause I'm finding it a bit intolerable, as in I want to smack myself ala Cher in Moonstruck and yell "snap out of it!" I don't like feeling sorry for myself (that's not entirely true, I used to be ace at it, but since then I have been "given" a real reason to and I suddenly don't want to anymore). I enjoy joking about it all, and I love it when people laugh instead of looking at me with that awkward "Did she just make a cancer/fat bald chick joke?" look, where they are too terrified to laugh.

And I hate when people who have beaten their cancer don't have a sense of humor. I mean come on! You beat the beast!!!! Fuck, I'll declare myself Empress of Manhattan if I beat this shit! I mean laugh baby, laugh a big fat belly "I conquered the fuck out of you" laugh. Like Zeus going all lightening bolt throwing and shit.

Does that make any sense? I want people to acknowledge that I'll likely be dead in less than a decade and to laugh about it? WTF is wrong with me?

I say let's just blame the steroid withdrawal and revisit my state of mind in 2012. Sound good?

Ramblings...

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!"

;)

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.

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... ;)