Tuesday, May 11, 2010

Finals and The Big C

One more final to go . . .I haven't slept in so long I don't think I remember how to fall asleep anymore.

But I am too tired to study. Drinking a beer. Yeah, I know, that is REALLY gonna help my statistics exam that I am going to take in exactly 8 hours. The one I haven't started studying for because I was so so behind one homework, that is actually what I did all day.

Sharing a new show on Showtime (which I don't have) with Laura Linney about a woman who gets a cancer diagnosis and then makes some changes since she has only a year to live. It will debut this fall.



Not sure how a I feel about it. I have problems with movies and shows about cancer, like My Sister's Keeper and that ilk. I don't like them because it allows people who don't have cancer the luxury to jump into our world for an hour or so, pretend they know what it feels like to go through the emotional upheaval of really honestly being scared that you are going to die and leave everyone behind in an emotional ruin, and then they get dry their eyes, and turn off the TV and go back out to their cancer free life.

Maybe I am just jealous.

Tuesday, April 27, 2010

Okay, no more God stuff, I promise. I just told someone last week that I had cancer, and they next question they asked me was, "Do you know the Lord?" I love Texas :)

I have been sick. Neecy came over the other weekend, coughed in my face (when I had her, she ALWAYS covered her mouth! Arg!), and now I have laryngitis or some crap where I have halfway coughed up a lung and I have no voice.

I completely avoided the hospital, which I am VERY proud of. If you get a temperature over 99.6 as a chemo patient it is the FIRST place you go because they don't want you to die of a cold (remember, we have no WBC for phagocytosis (see, my Biology class is coming in handy!) and therefore have no immune system. So you get a cold, and I get pnuemonia type thing. And once you go to the hospital, you have to stay there 24 hours which ends up being like 2k which I have to pay 20% and THAT IS NOT HAPPENING BEFORE MY TRIP TO HAWAII! I wanna be able to swipe my mastercard at Kona Brew Pup baby! And Atillas (aka Harbor House)! And Costco!

My fever went up to 101.5 (eek!), but totally cool, it broke on Sunday morning and all I got was a script for levaquin when I called the doc on Monday. I know I could have called the doctor and just gotten a perscription for antibiotics earlier, but I didn't want to LIE, cause I knew they would ask if I had a fever. So it was better not to call, that way I didn't have to lie.

Luis is probably stoked since this is the first time I have shut up for three days straight since he has known me. I try to whisper at him, but that gets annoying for both of us, so basically all my thoughts bubble around my head with nowhere to go. I didn't realize how much I needed Luis as a sounding board for my internal monologue (that really isn't so internal, is it?). No wonder I call my Mom 4000 times a day. It isn't really to tell her anything, just bounce thoughts off of her. We do it as a family, which can be disorienting.

I remember when I took Luis to meet everyone all together in California for the first time (before we were united in matrimony) and I remember him needing to walk around outside with me and just BE AWAY from all the talking, the brainstorming, the feedback, the barrage of information and fluff that we just throw at each other without thinking.

Anyway, without chat and facebook I would really be suffering right now, but at least my iPhone and computer have offered some form of interaction that does not require vocal chords.

I have my first treatment without chemotherapy tomorrow. Now I am just going to wait for my dear husband to come home (I have infected him with Neecy's disease) and tend to my man as he tended to me these past few days.

Wednesday, April 21, 2010

OMG

My final chemotherapy was today!

Eyelashes and eyebrows are coming back!

I still have two more years of infusion treatments, and perhaps 5 more years of hormonal treatments if I decide to take tamoxifen, but chemotherapy is over.

I would like to address the subject of God.

I have met so many people, and received so many messages, about praying to God. In fact, many people can't believe I am so upbeat and positive and don't have God in my life. I received amazing gifts, rosaries, books, pictures of the Virgin of Guadeloupe; I cherish all of them because they mean so much to the people that gave them to me, and therefore have value to me.

I believe in "God," or at least something out there way bigger than us. I will use "God" as sort of the catch-all phrase for belief in a higher power.

I have a very non-traditional view of religion. I think humans are like ants. We see ants going about their lives, making babies, serving their queen, etc etc, but we don't expect ants to understand our problems about our cheating husbands, our kids with learning disabilities, wars, plagues, earthquakes, famine. We just know that ants can't wrap their minds around those concepts. Even if the ants wanted to, they couldn't.

And that is how I characterize our relationship with God. We are ants. There is something so much bigger than what is going on around us, that there is no way, no possible way, no matter how much I tried, I could wrap my tiny little brain around what is really going on out there in the metaphysical world. I just don't think we humans are near enough to god to understand.

Nor do I think it matters. I don't think God cares whether or not humans believe in him or not, or how they worship him. He has bigger fish to fry. His livelyhood doesn't depend on us. He would be in trouble if it did. Do I sincerely care if the ant comprehends Obama's health care bill or the earthquake in Haiti? Do those bigger issues affect the ant's life? No.

Do I have any evidence for this? No. But it is the view of God that I have constructed for myself, and it is just as valid as any religion. And just because there are only a few people that believe this, while millions believe in the Catholic or Muslim brand of religion, doesn't make mine less valid. Numbers do not translate to validity. I have just as much proof as you, i.e, no proof at all.

So I have LOTS of people telling my to pray to God. I sincerely think "God" (for simplicity's sake, we'll just keep calling him that), doesn't care if I have cancer or not.

He has WAY bigger shit to worry about. Like do you care if a bug in your yard has cancer? I mean, I suppose if you stopped your busy day to think about it, you would probably prefer that they beetle, spider, or cockroach, doesn't have cancer, but you aren't going to loose any sleep over it.

But I don't mind engaging those who are of the belief that prayer to God will make my cancer go away and never come back. So let's go!

Assumption 1: God is in control. If God were not in control, no point in telling me to pray because that means God has no affect on my cancer, because he is not in control. So, again, God controls all! ( Leaving the Devil out here, since I think the idea of the devil is just RIDICULOUS. )

So if God is in control, God gave me cancer in the first place, right? Or he let it happen, or whatever. Point is, the lord giveth, the lord taketh away. God is in control = God gave me cancer.

So if God gave it me cancer, there are two possibilities: there either is a reason for God to give me cancer, or there is no reason for God to give me cancer.

Let's deal with the latter first. If there is no reason, then me praying isn't going to do any good. God had his quota of 2,000 people to get cancer on January 14, 2009, my name popped up on the cancer lottery, and boom, my cells started multiplying out of control. Totally random Godness action.

If God gave me cancer for a reason (facing adversity, being an inspiration to my mom, etc), then me praying shouldn't have anything to do with cancer being treated and dealt with.

Unless you think that God gave me cancer so I could learn to pray to him (yes, I can feel you all nodding in agreement).

Definition of extort: wrest from an unwilling person by physical force, menace, duress, torture, or any undue or illegal exercise of power or ingenuity

That is extortion, pure and simple. In this hypothetical, God is EXTORTING me. He is doing something bad to me, until I worship him sufficiently, and then he will make me better. That is such a human thing to do, and a total projection of our weak characters onto God. God would not extort (well, maybe Old Testament God would). If God is extorting me, he can kill me right now because I don't want to play games with a mafia boss.

So anyway, that is why I don't pray to God. Under the assumption that God exists, praying to God just doesn't make sense. Unless you don't mind being extorted. Which I do.

I do think positively, I do think about how wonderful life is and all I cherish, I do hope. I have done everything in my power to change my lifestyle to an anti-cancer lifestyle. But I don't pray to God.


Note: I am not writing this post to start a discussion. I am writing this post to clarify my view point. Getting into a God discussion is going to be a big waste of time for me and you. However, after a year of receiving so many emails about how I need to pray, I thought you might be interested in my view point.

Thursday, April 15, 2010

Hullo out there!

I have been so busy I can't believe it has been a month and a half. I have 948 (granted, most junk, but I still need to sort) emails in my hotmail box and about 60 in gmail, and tons in FB, so I am SO SO SO SO SO sorry for not being better at communicating when all of you, especially when it is all of you who lift me up and keep me going when I am so fricking tired and frustrated and ugly looking/feeling.

Quick update on everything:

School: Swamped. Two sciences with labs and an online (basically, teach yourself) statistics was a lot to take on during a semester with radiation, chemo, and a job (yes! I got one, more on that later). Still getting As in everything, planning on summer school, and looking forward to more self-enrichment!

Job: I am now working at a company called PhotoStat which copies medical records for various clinics and hospitals. I am working 20 hours a week. I hope that as soon as I get back from Hawaii I will be able to dip my feet into their sales team too! I am also going to work for the US census. They need Spanish speakers and it pays almost $20 an hour. I can do it in the evenings and on weekends, so it is totally flexible. So hopefully I can start paying all the medical bills that are rolling in. If you ever get cancer, try to keep all the fun and exciting chemo and surgery within a calendar year so you can hit your out-of-pocket just once, not twice. Paying 20% of everything like radiation and chemo sucks!

Health: Luis and I got a scare last week when the Khanny baby called with my PET scan results and I was told that there was something on my lung. Eeek! He said it could be radiation damage, but they needed at CT scan. Scared the poop out of me, but it ended up being pneumonic inflammation (lots of fluid in my lung), so in addition to 3rd degree burns my radiation treatment also f'ed up my lungs. It will get better, but radiation damage to vital organs is not on many people's "Thing to Experience" List.

Now this is the BIG health news: My last chemo treatment is going to be next week Wednesday!!!!!!!!!!!! I am going to get my hair back! My nails back! My periods back (I can't believe I am WISHING for that one, girls, but I am!!)!!!

Now, for the next two years every two weeks I will have monoclonal antibody treatmens of Herceptin and and angiogenesis inhibitor Avastin, which almost as bad as chemo because your body doesn't heal and blood randomly gushes out your nose in the most horrible places (romantic dinners with your husband, while you are holding children with both hands, after eating hot foods, etc), BUT it isn't chemotherapy.

Okay, it is after 4am and I have a HUGE bio test manana, but i wanted to say hi, tell you all I am so sorry for being out of contact, and come next month, I am going to be much better at responding at emails. Love you all. Life is wonderful. Thank you for being there for me even when it seems I have disappeared into the ether.

Tuesday, March 9, 2010

He's there . . inside your mind

I went to the radiologist today with my chest burning from the pain. I have to keep the burns very wet slathered in cream, otherwise the skin tightens and pops and then I get rivulets of blood running down into my stomach. Verdict by my nurse practitioner, as the doc is useless. Postponement of radiation and chemo for another week. Happy, but not ecstatic about extending my treatment further into the future.

They look at my chest, gasp, say, “Oh my god,” and then they tell me that this is normal. I know it isn’t. 2 weeks of radiation postponement is NOT normal. You aren’t even supposed to miss a day. Luckily it is at the end, and I know for a fact that if I am this sore, then the radiation probably got any stray cells that were biding their time, waiting for the chemo to finish before they began multiplying again.

But on to fun things!

Carla took me out to see Phantom of the Opera. It was wonderful. We had a girl’s brunch with bottomless mimosas. I was so zonked on the vicodin that I could barely hold a conversation, and didn’t partake. Then we drove to Fair Park, where Phantom was being held and it was so magical. Carla got seats in row C. ROW C! I could see the actors so well, and it was a much different experience than seeing it from the balcony (not Box 5), where I have been every other time.

I came home and an hour later our friends popped by for the Oscars. It was a great group of moviephiles. Usually I go to an Oscar party and I can’t hear anything cause everyone is talking and no one actually cares. But this one EVERYONE cared! It was fabulous. We had a pot, filled out ballots, and Renata walked away with all our money.

I am desperately trying to catch up on homework since last week I was out because of my painkillers. But American Idol is on tonight . . . . so not sure how productive I am gonna be

Friday, March 5, 2010

owee!

It really does feel like someone has poured boiling oil all over my skin. There are several large patches, maybe the size of a deck of cards where my skin has pealed away and left very new raw skin open to the exposed air. It hurts so much I can't wear any clothes without pain, and I have to keep the blistered areas covered with burn cream.

When I took my cats to the vet today for their rabies vaccinations, Pistachio decided to climb my chest to avoid the anal thermometer (can't blame him!). It hurt, but I didn't realize how bad it was until this big blood rose bloomed on my chest from where his nails scratched my raw skin. So I got home, tried to continue functioning on 3 super Tylenol, but I had to give up and go to the big V to numb the pain. It almost makes me cry, and trust me, I haven't cried because of pain in, well, I don't know how long. Long time.

I have so much to study, but I have to be on vicodin the whole time, and I simply can't retain or memorize information on it. It is quite frustrating. It took me 3 hours just to get through 10 pages of stats. So I try to do Tylenol during the day, but the pain is unmerciful, and I just can't. So my studies are going down the toilet.

I have people here cleaning the house, because I hate doing housework when I fell perfectly well, let alone when everything burns and I want to hit people and break things to deal with this. And there is something just wonderful about having professionals clean your house. It is like getting someone who is really good at ironing to iron your shirts. They can do a better job in three minutes than you could ever do in like 20 minutes of ironing the same shirt. Luis thinks it is a waste of money, but the idea of mopping my floors, scrubbing toilets, cleaning the base boards, dusting on top of all the cabinets, fridges, sills, and everything makes my stomach turn.

Okay, I am blabbing right now. I have a million things to do on my to-do list, and no ability to concentrate on any of them, so I think I am going to work on my family tree :)




Wednesday, March 3, 2010

Family Tree and Sucky Radiologists

I have become obsessed with my family tree. I don't know if it is the whole dying thing, but I really want to know where I fit in the the grand scheme of things. Getting down my family tree has been a really interesting and soothing way to place myself in history. I am using a great free online software called www.myheritage.com. I tried out several, and this was the most modern, most options and the easiest to use.

I have really only added my grandfather's side and I have 155 people so far going back 4 generations to Augustino Mecca, born in Italy in 1864. These Italians procreated like rabbits, which accounts for the amount of people with only four generations. And this is as far as it goes! We don't have much info passed that mid 1800's. So I think once I have everyone down, I might have to do some archive sleuthing! Fabulous excuse to go to Europe, don't you think?

Luis' family is going to be a madhouse, because even Luis mom doesn't remember birth dates for everyone because again, Catholic = lots of people and Puerto Rico = not the greatest record keeping. I guess that is what happens when you have 17 brothers and sisters;) Saving them until summer. Gonna get the American/Italians/German's down first.

Health Stuff

My blistering has caused my docs to postpone both my chemo and my radiation. ARG! But I need to heal, and trust me, it doesn't feel great, so I accept their opinion that I need to wait. I hate missing chemo when I take my pre-steroids because I just pumped by body full of really bad stuff for nothing.

I have learned a lot about radiologists during this month and I am not too impressed by my doctor so far.

Radiology is a GREAT field for doctors that suck at being people people. Their patient contact is minimal because the people that actually administer the radiation are the dosologist and the radiotherapists. I see the nurse practitioners every day, and they are wonderful, but my radiologist doesn't explain anything, and just checks my skin once a week for about 30 seconds.

So basically, since radiologists just see their patients once a week, they can make lots of money by serving patients in 3 or 4 clinics during the week, and going to one clinic each day. Most regular doctors work in 1, but radiologists can bounce from clinic to clinic, since their nurse practitioner, dosologist, and radiotherapists are doing all the work for them. Now, granted, the work is just running a computer program and the machine creates the gamma ray output, it doesn't take much skill, but radiology can be big money cause so many patients can be seen by one person. Here is a NYT article about it.

So this weekend, as most of you know from my griping, was pretty painful. I had radiotherapy on Monday, which was my last session for the entire chest area. I also had it Tuesday, which was the first of five treatments around the surgical scar. My radiologist who doesn't usually come into the radiation room, came in before my treatment on Tuesday to make sure that the radiation to the incision area was lined up. Therefore, he had to look at my chest, and he did, but only for about 15 seconds, and then he turned around and left without really saying anything (he nodded to the radiotherapist).

Tuesday is also the day that I see him at an appointment. I first see the nurse practitioner, who gasped, and said that we need to postpone treatment, that I needed to be on antibiotics until my wounds closed up, and that I needed burn cream, and needed all of this today. Then the radiologist waltzes in, she tells him my treatment plan, and he agrees. Which is fine, but HE SAW MY OOZY NASTY CHEST 15 minutes before that. Didn't that set off any alarm bells? Why did he let me get treated and then 15 minutes later say the damage was serious enough that I needed to take a week off? I don't think he looked at all, to be honest. He is just in his own world.

So lessons learned. 1) Make sure you see a radiologist that examines you BEFORE you get radiated, not after. 2) Make sure you get a radiologist that is a people person and actually enjoys patients 3) Make sure you get a radiologist that isn't jumping back and forth between 3 clinics and is super busy.

At first I though the Medicare regulation was too strict, and now I know it is necessary. The NYT article is really interesting. I hope you enjoy it.