Wednesday, May 29, 2013

Radiation 101

I thought I'd do a little post about radiation because as I thought about it, it's one of those hidden, unglamorous things about cancer that the average person probably doesn't know too much about. Heck, I sat down with my radiation doctor for an hour and still didn't really know what to expect. I knew about the burns, the fatigue, and the possible side effects, especially being a left-sided patient (unfortunately where your heart resides so there's always a remote possibility of heart damage in the future). But I still didn't really understand what happens, and it's a common refrain I've heard from my fellow cancer peeps. I mean, really, you see people receiving chemo in movies and TV - if it's lighthearted, then it's Samantha eating popcicles with the girls, having a few hot flashes and drinking a cosmo. If it's dramatic, it's somebody hunched over a toilet, puking their guts out as chunks of hair coat the bathroom floor. The truth is somewhere in the middle, but at least it's protrayed. The only time you are exposed to radiation - pun intended - is either Cher getting scrubbed down as the alarms blare (am I dating myself here?) or Russian sailors basically melting before your eyes after trying to fix the leaking reactor. Cancer radiation isn't movie-worthy. It's boring and it's slow (reaction-wise, you don't really have most effects until the last week or two), there are no cool IV's to show...there's just a big huge machine that makes a sound like an x-ray, and then you go home. So here's a quick synopsis of what the radiation train is like.

You can see the redness on my chest and neck here.
First, you start with a CT scan, or some similar procedure. I actually had two, one to see if the cancer in my inoperable lymph node was gone, which it was, and then a second one, which everyone has, which is basically the map on which your plan will be implemented. All of the radiation oncology doctors confer, come up with a plan based on I'm sure, many factors, and then it all goes into a computer and the plan is mapped out. You then go in for x-rays, to make sure you still line up with the plan, you get some tattoos (not in the places I expected, I have three across my mid-line, one near my armpit, and I think there may be one somewhere else. They are just pinpoints, not the ink I like. :) Then you go in prior to your first treatment to make sure that the machine is calibrated correctly to you and that all of your points match up. Then you start. You go in, they line you up with the coordinates, and it starts. They put a bolus on you, which is a gel-type pad that keeps the radiation beams at the surface of the skin. I get zapped 4 times, for about 10 seconds each. There are these metal "teeth" in the machine that move around and open up to the shape that needs to be radiated, and then it happens. The table raises high, you are about 5 feet up in the air, and there are lasers all over the room, but you don't see the radiation beams, and you don't feel them. Some people say they feel a bit of heat, I actually felt a bit the first few times, but not after that. The number of treatments varies depending on more numerous factors, including cancer type, stage, age, aggressiveness, location, etc. etc. I am scheduled for 33 treatments, 28 regular treatments and 5 boosts (boosts are radiation treatments that are concentrated only along the scar line, a place where cancer can often recur). The treatments go from the bottom of my neck to a bit under my bra line, from the center of my chest to the mid-line of my rib cage. I started the boosts yesterday, even though I have two more regular treatments, because over the holiday weekend all of the radiation seemed to catch up with me and my underarm is very burnt and painful, so hopefully this rest will let it heal a slight bit and I can make it through the last two next week. Considering how very fair I am and how I got red so quickly, I'm still doing okay comparatively, but damn it hurts!

Showing the huge contrast of my butt white skin and the red burnt underarm...

Just because I know you wanted to see a close up :)

Sunday, May 26, 2013

Memorial Day

I know many of you are heading out to barbecues, camping, the river or the beach or whatever to celebrate the holiday weekend. Which I wholeheartedly support! I cannot wait for the day when I feel well enough to do those things, not to mention to be able to start working again so that I am able to have a "holiday" :)

But I beg and implore you - please fly your flag. Please take a minute, or more, to remember what this holiday is about. If you have children, please please take a minute to teach them why there is a Memorial Day. I am not stepping near a political debate here, whether you agree with the war, whether you support the president, what you think about military spending - I don't really care. What scares me is the fact that so many people, not even just kids, have no idea about military history, or have no connection to anyone who has ever served, that important historical and societal lessons are being forgotten. I come from a family with a strong service background. My great-grandfather, grandfather, uncles, numerous cousins, brother, sister, father-in-law and myself and my husband were all in the military. Our family lost a cousin in Vietnam. My grandfather was at Iwo Jima, my uncle was a raider at Guadalcanal.

We don't have generals and colonels in my family, we have grunts and lance corporals and sergeants and pride. I used to have my grandfather's stories memorized, I heard them so often. But his dementia came on and the stories became confused and life moves on and now I can only remember so many and that greatly saddens me. I should have recorded them when I had the chance.

A few years back we found people who had been with my cousin when he was killed in Vietnam. He was in country only two months, yet these men talked about him like they had known him forever, and were still devastated by his death 35 years later. I don't think there are many things in this era that can exact that kind of emotion and loyalty. So teach your kids what has been given and sacrificed. Pick the name of a soldier during a long ago war and research him. Learn the history of the branches. Go to a Memorial Day service. Just remember.

Sunday, May 19, 2013

Radiation - have you had your dose today?

Radiation blows. Now, that's not true for everyone, many people I have talked to have breezed through it, especially after chemo. However, since I breezed through chemo, well, here I am. I'm not doing terribly, and actually the doctors are quite pleased when they see me every week, saying my skin is holding up considerably well for being so fair and for turning red so fast. I cannot even imagine what they see and frankly, I don't want to. Last week, one of the radiation techs, after telling me my skin looked pretty good for day 15, proceeded to tell me about all of different kinds of cancers they treat, and how some are just awful no matter what you do. I'll spare you the conversation, but I try to remember that when I am walking around with my chest hurting all day, trying to carry the baby, trying not to punch her when she slaps and scrapes me on the chest with her no-matter-how-often-I-cut-them-they-are-always-there nails... (kidding people, seriously). But you get the point. I try to keep it in mind that in the scheme of things, this treatment is nothing compared to what some people go through.

Which I have been thinking about a lot lately, always being appreciative of what you have because you can always find someone worse off - until you are the person perceived as worse off! On the last day of chemo, I was talking to my nurse, who had not done my chemo while I was pregnant, she only did the taxol. We were chatting about something and I said, well, yeah, remember I was pregnant when I started and she said oh that's right. Some of the patients would talk about you and say "Well, at least I don't have it as hard as she does." And I was shocked - I didn't want to be that person, I wasn't that person, I was the person who sailed through chemo, hardly any problems at all! I didn't want anyone feeling sorry for me, not one bit. So there you go, more conflicted feelings brought to you by the cancer channel. Stay tuned for the next episode.

Wednesday, May 15, 2013

Shut the F Up!

Leave it to Angelina to stir up controversy. Apparently everyone is an expert about cancer now...especially people who have never had it. This post stemmed in part from yesterday's post, and my stupid stupid obsession with reading the comments section on articles, and comments some of my facebook cancer friends are receiving. I should NOT read the comments! EVER!! Anyway, it's been brewing for a while, and after chatting with some of my facebook cancer friends, it just needs to come out. If you are offended by language, change the channel.

1) If you feel the words, "Oh, lucky you, you'll get new boobs" coming out of your mouth...shut the fuck up, just seriously, bite your tongue off if you have to, drink some cholula, occupy yourself by going to get a tongue piercing, I don't care, just don't say it. If you want to type or text it, sit on your hands, learn sign language, break your thumbs, do something else with them right quick please.

Sure, most of us will go through some sort of reconstruction at some point. After we've been mutilated with a giant horizontal scar, after we have lost anything resembling a breast, after our underarms are misshapen if we have had lymph nodes removed, after we have lost feeling in multiple places. Then you get to choose from procedures involving the insertion of an expander behind your pectoral muscle that is slowly filled to stretch your already delicate skin, worse if you've been through radiation, or you get skin and tissue taken from your back to rebuild a breast, or from your abdomen. You can take visions of Pam Anderson right out of your head because what you are left with, if you are lucky, is serviceable, and if you are really lucky its close to symmetric. This is not a visit to Dr. 90210. Additionally, I'm sure 100% of us would gladly trade this opportunity for new boobs to, umm, maybe not have to have a life-threatening disease that could recur at any think, maybe, hmmmmm??? "Thank God I got cancer, I can have that boob job I've always wanted" said NO ONE EVER.

2) Unless you have cancer, or maybe possibly your spouse or child has had cancer... please don't offer any "knowledge" that you have about how I got it, how I can cure it, what I should or should not be doing, what you heard from your friend's cousin's hairdresser, or how your high school teacher found the cure in the Amazon and is only sharing it with certain people. Please don't offer what you think are mortality rates ("oh, most people die from that right?"). Almost just as bad, please don't say, "Oh, everyone lives from that these days, no problem, no biggie!" Please don't tell me that not eating sugar will keep all the cancer away, that I should have been doing juice cleanses since I was 12, that hemp oil will cure me, that chemo kills people, the mammograms cause cancer, or that I could have prevented it by following these five simple steps. Shut the fuck up.

3) If you know someone going through cancer treatments, don't tell them that they put on weight/lost weight/look tired. Believe me, we very well know if we are gaining weight, usually from chemo and steroids and any number of medications we may be taking. We may not be able to keep up a robust exercise routine right at the moment. Also, believe me, people know if they are losing weight and that could be because they can't keep any food down, are stressed beyond belief and have no appetite, or they may not be doing very well. Either way, you don't need to point it out, that I can assure you. Don't you dare tell someone they look tired. If you haven't had chemo, surgery, radiation, and in my case, an infant at the same time, then don't even open your mouth. Cook them some food, clean their house, tell them they are beautiful, bring some flowers, but otherwise, shut the fuck up.

4) Please do not reprimand the person about keeping up a positive attitude, that a positive attitude will cure them. Believe me, I honestly have had a pretty damn good attitude during this entire mess, but some days are just sad, gloomy days. There aren't many, but when they hit, they hit hard, and you know what? I am perfectly entitled to have them! I bet you have bad days and you don't have cancer! I know sometimes it's just because you are scared for the person, and when they are sad, it scares you more, but this is their time, not yours. It's your time to be the strong one. If you can't, shut the fuck up.

5) Cancer has made me many things - blind and deaf are not some of them. Poor eyesight has made me almost blind, but you know what? Glasses have pretty much fixed that, and I can see you staring and I can hear you "whispering". If you see someone with a bandana on, don't stare. Go up and say Bless you, or I'm rooting for you, or I'm sorry you are going through this, please stay strong..say almost anything, but don't stare and don't whisper. I still and will always remember the man who came up to me and bought me lunch when I was so heavily pregnant and bald in my bandana - not because he bought me lunch but because he was the only one during my entire bald pregnancy that came up to me and said something. He said I don't know what you are going through but good luck to you, you will get through it. Not the most eloquent thing in the world, but something I will always always remember. So basically if you can't say something, don't whisper in front of my face - shut the fuck up.

This is not even half of it, but it's a good start for me...thank you to all of my friends and family who have not done these don't know how much it is appreciated...

Tuesday, May 14, 2013

My two cents...

Okay, if Ang can write an op-ed piece, then I can write about her op-ed piece, so here it is...

Angelina Jolie's revelation that she had a prophylactic double mastectomy has raised some issues, gotten people talking because of course, this is Angelina Jolie, and hey, these are Lara Croft's boobs we are talking about here. I applaud her decision, and frankly I'm jealous, jealous that she had the option to do something prophylactically, that she likely wasn't restricted by what her insurance allowed her have, i.e. tests, doctors, surgeons, etc., that she, as of yet, did not have to have chemo and radiation and the cancer cloud hanging over her head, and personally, I think it's no one's business but her own....but let's get one thing clear - she did not have cancer and cannot speak to what it is like to have cancer. I understand her mom died of cancer and she watched that, so she's knows better than some, but still, to compare her surgery to someone who has cancer and is having a double mastectomy is not in the same ballpark. I should have learned by now to never read the comment section of articles, and this one did not disappoint. The amount of misinformation, misunderstanding, and just plain wrong-ness out there is, quite frankly, astounding.

I don't believe she has "gone through hell" as I've seen some comments say, and I'd be willing to take a bet that she would say the same thing. Hell, I don't even think I have gone through hell knowing what some other people go through.  I don't believe she is a hero for doing this, a champion, a badass, any of those things. I think she is an extremely lucky women to not have developed cancer so far, to have the resources to be able to make this decision in the first place, and to likely have the best medical resources at her fingertips to have an outcome she is happy with. Many many women do not get even one of those things. As I've discussed before, the BRCA test she had done costs between 3 and 4 thousand dollars, and many insurance plans won't cover it - likely not a concern for Ang but that is a huge chunk of money to most families. Secondly, she apparently had a nipple-saving and likely skin-sparing surgery, where they basically scoop out the breast tissue but your skin and nipple are saved. Please don't compare that to a mastectomy needed as a result of cancer, where an extremely minimal amount of women get to have the option of a skin- or nipple-saving operation. Thirdly, I know in her article she stated that "the results can be beautiful." Well, they can when you are keeping most of  your skin and your nipple. Most of the women I've talked to who have had reconstruction or are going through it currently would not describe results as "beautiful". Functional, hopefully comfortable, not painful, and if you are really lucky, symmetrical, seem to be what we aspire too.

I know she didn't mean to, but I truly hope people do not confuse what she is describing, a prophylactic double-mastectomy - no cancer, no chemo, no radiation, no lymph node removal, arm stiffness, no worry about lymphedema, skin- and nipple-sparing - as anything close to breast reconstruction after cancer. As I said, I truly admire her decision, she has a greatly reduced risk of breast cancer now (mind you, the risk is not gone, it is greatly reduced, but not eliminated) but I'm just hoping people recognize there is a difference and don't look at their friends, relatives, etc who are going through cancer treatments and then having reconstruction and say to them "What are you complaining about? Angelina did it, she made it sound pretty easy!"

Sunday, May 12, 2013

mother's day.

I missed out on Mother's Day 2010 by a few weeks, very heavily pregnant with Jack, developing a lovely case of PUPPS, and just trying to get a few hours sleep a night through the heartburn, so this is my third Mother's Day. And as with everything, its meaning has changed for me. Again, I will NEVER be one of those people who say I'm so happy I got cancer, it changed my life...because, umm, hello, yes, it changed my life but I could do without that, thanks. I will admit it changed my perspective though. Now, don't get me wrong, I would love to get the mixer I've always wanted and promised myself, or maybe the ring I've been coveting for 10 years now, a surprise getaway, or hell, a card and some flowers would be spiffy. Okay, so I still have mortal wants and desires, cancer doesn't make you a saint people, but overall, while some mothers are out there bemoaning their lack of gifts or time to sleep in or breakfast in bed, I am content with the sheer existence of the fact that I'm here and I'm privileged to get to mother these kids. God willing, I get to spend many more mother's days with them, ingesting the fact that I have had another year to know them, for them to know me. When I was still in the "fog of war" right after my diagnosis, when I was walking around with the 1,000 yard stare, one of the first things that scared me terribly, one of the first things that I cried to my husband was not about me per se, but I sat there looking at him, pleading with him, that "I can't leave Jack, he doesn't even know me yet." The tears flow just thinking about that, because I can relive that moment all too clearly in my mind.

While I strongly believe now that I will be around for a while, I am assured of the fact that no one, not any one of us, knows what is going to happen, and that anything could happen at anytime, which is why I am still compelled to write these things. And I'm also here to reflect on and acknowledge the fact that my kids have endured a pretty shitty year themselves. For this, I have more unwarranted guilt than most can imagine.

Baby, I'm so sorry for this past year. I'm sorry that I got sick, I'm sorry that sometimes I was very sad and you didn't understand. I'm glad you didn't understand. I'm sorry that sometimes I got short with you, and it was not your fault - I was scared or sad or worried or tired and sometimes I am ashamed to say I yelled at you louder than I should have, or got mad at you for things I shouldn't have. I'm sorry that I couldn't play with you as much as I wanted, after two surgeries and chemo and radiation and a new baby. I'm sorry we couldn't do all of the cool and fun things that I have "pinned" for us to do. I'm sorry you got cheated out of a normal Halloween and Christmas. I'm sorry for this whole year.

You have been amazing through all of this, and you are a wonder to me. A year that would have been enough change for you just with your sister arriving, when just navigating the world of being 2 is hard enough, you had to deal with all of mama's crap too.

I pray you will not remember much of this year, that you will remember the 95% good and forget the 5% bad that keeps me up at night, and I pray we will never have to relive it. You don't know how much I look forward to watching you grow, how much the thought of you developing into a little man more and more each day gives me reasons... reasons for so many things.

My little girl, who I don't even really know yet, yet have known forever. My little mini-me. You surely did not ask for this, to be subjected to tests and poking and prodding and toxic poisons before you were even born. But you, my amazing, stunning little beauty came through with flying colors. I think all of our doctors knew you would be fine, they were all pulling for both of us so very much. But when I was in the prep room before going to the operating room to have you, the one nurse came in, and she, not knowing us, started listing all of the myriad things that may be wrong with you, insinuating that I should expect them to immediately whisk you away, terrifying me since up until then everyone was completely optimistic that you would likely need no intervention. She reiterated that the entire NICU team would be in the delivery room, waiting to pounce on you. Well, she didn't know you did she? You came out screaming and bright and pink and BIG for 35 weeks and 5 days. And you needed no help at all, as I knew you wouldn't. Everyone in that room was so happy, for both of us. I am so privileged that you chose me, even with all you had to go through to get here. I am so very eager to witness who you become. And also to see you grow into all of that tulle I have for you. :) Again, even though I didn't know it, you were exactly what mama needed.

To both of you, thank you - thank you for choosing me to be your mother, thank you for your resiliency and forgiveness, thank you for letting me into your world, thank you for bringing amazement to my world. No matter what happens, no matter where life takes our little family, always always remember the inimitable words of Christopher Robin:
"Promise me that you will always remember: you are braver than you believe, stronger than you seem and smarter than you think."

Thursday, May 9, 2013

Chemo brain

For those of you who have been pregnant, you know pregnancy brain is a real thing. Some may get it worse than others, but for the most part, every woman I know who has been pregnant has had some degree of pregnancy brain. Now, try being pregnant AND going through chemo and I often wonder how I even managed to keep Jack dressed and safe last year. Thankfully, the pregnancy brain has subsided, but the chemo brain is definitely still showing its pretty little head. For me, the biggest effect that I have noticed (maybe there are others that I just don't remember that I've noticed, who knows!) is that I often have a very difficult time finding the word/s I want to use. For someone who had made their living as a writer (not the fun kind) and always took pride in her slightly colorful use of vocabulary, to not be able to place the correct word that I want to say or write, to literally sit there for a good length of time searching my addled brain for what I am looking for, is absolutely maddening. Don't get me wrong, I forget things much more easily now also - some bills have fallen by the wayside, and this is from a person who is exceedingly careful a.k.a. tight with money and a stickler for paying bills on time; I leave things in incorrect places and then either forget about them or wonder where they are - what I do NOT do is forget anything my husband tells me, so when he tries to say I told you that but you must have :) Anyway, here is an article saying I'm not crazy! At least about this...

Saturday, May 4, 2013

33% done...

Not a big number, but it's a milestone for me in this radiation business. I don't love it. But I think after I resoved myself to it this week I've come to a tacit agreement with it that we just go about our business -  I go in, I leave, I slather on my creams and potions to counteract the burn in between, and in 21 more business days it will be over. That is all.

To all, have a wonderful Cinco de Mayo tomorrow, be safe, have fun, enjoy!