How do you measure a year in the life?
I measured it in ultrasounds and biopsies, black masses, and sinking feelings.
I measured in it terror-filled hyperventilating half-breaths,
sleepless nights,
early mornings, deep breathing and doctors visits.
I measured it in MRI's and EKG's, blood tests, urine tests, blood sugar tests, finger pricks, and baby kicks.
I measured it in 16 rounds of chemo, hair strands falling out, rainbows of bandanas, and pre-natal non-stress tests.
I measured it in confused stares, loud whispers, grasped hands and prayers.
I measured it in perfect baby girl first cries, in surgery, in CT scans, in pathology reports, in interminable medical bills.
I measured it in help from strangers, kind words, unknown prayers and donor milk.
I measured it in rainy days, grey clouds, heat waves, and electric purple sunsets.
I measured it in stifled shower sobs,
in laughs with chemo nurses,
in baby toes and late night feedings.
I measured it in 33 days of radiation, deep burns, painful cries and peeling skin.
I measured it in a 38th birthday, a 49th for my husband, and an awesome 3rd birthday for my boy.
I measured it in stupid cruel comments, in beautiful gestures, in buckets of tears, oceans of hugs, and yes, cups of coffee.
I measured it in long walks with baby, laughs with my boy, hugs with my husband, and love from family and friends.
I measured it in renewed dreams, hungry views of travel, terrified glances over my shoulder, tentative plans for the future.
That's how I measured a year.
Showing posts with label side effects of chemo. Show all posts
Showing posts with label side effects of chemo. Show all posts
Friday, July 12, 2013
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 time...you 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 things...you don't know how much it is appreciated...
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 time...you 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 things...you 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!"
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!"
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 forgotten....no. :) Anyway, here is an article saying I'm not crazy! At least about this...
http://www.breastcancer.org/research-news/20130425-1
http://www.breastcancer.org/research-news/20130425-1
Thursday, January 3, 2013
Halfway through.
Halfway through my ride through Taxoltown. They slowed my infusion waaaaaaaaay down and I don't have reactions anymore however I am in the chair for 4.5 hours - ugh. But I started watching American Horror Story this last time so I think for the next 25 hours that I have left in the chair, I should at least now be entertained between catching up on series I've been meaning to watch, and giving into a few benadryl-induced naps. Other than the very long time I spend in the chair every week, I'm not doing too bad with this chemo either. I haven't even lost my hair, and I was supposed to, in fact the nurse said usually by the second treatment or so people have lost their hair. Sort of freaking me out that I am having so few side effects - in fact if it hadn't been for the reactions I was having I would think I was getting a placebo. The thing I am most happy about being halfway through with though is having this PICC line in... I am sooooo over this. I'm over having to wrap my arm every time I take a shower, I'm over my skin starting to peel from having the medical bandage over it constantly and I'm over being able to feel the line inside my arm when I move it certain ways. Over it!
Thursday, December 6, 2012
Et tu, Taxol?
Well, Jack erased the whole post I had, then the baby woke back up so let's see if I can retype this
one-handed. Second Taxol treatment in, ten more to go. Taxol was supposed to be easier than AC but since I didn't have any side effects from the AC maybe I'm not the best example of comparisons. I had my second reaction yesterday - about 5 minutes after the Taxol starts I get bright red, intense hot flash, blood pressure goes up, I feel light headed, and yesterday, I got the lower back pain they talk about (apparently that's from your adrenal glands trying to shoot out adrenaline). So they stop the medicine, gave me more steroids, waited for my bp to stabilize, and then started it again reallllly slowly. After reading on the internet, it seems reactions like this are not that uncommon, and some are way worse. There is another medicine, same as Taxol, called Abraxane, that is "wrapped" (preserved) differently and therefore, does not produce these reactions in people. However, it is super super expensive so Dr's don't use it unless people have severe or constant reactions to Taxol. Ahhhh, big medicine, I love you.
I know I have 10 more treatments to go (Feb. 13th, I'm stalking you) I'm hoping my side effects stay minimal. I know with Taxol they tend to show up as time goes on and the drug is in you more cumulatively, but here's hoping. Last night I was pretty wiped out and tired, but today I seem to be okay.
I know I get many thoughts and prayers from people who read this...can you keep Martha in your prayers too? We found each other on the internet after I was diagnosed, I think through Babyrabies maybe. She is almost on the same timeline I am, I think she was diagnosed a month before me when she was 32 weeks pregnant, but her protocal has been a bit different. She had a lumpectomy last week and they found more tumor than they thought was supposed to be there per her last MRI, so she went in for a mastectomy and lymph node removal yesterday too. Kind of a surprise after you think something is not there, so harder to process I think. Thanks!
one-handed. Second Taxol treatment in, ten more to go. Taxol was supposed to be easier than AC but since I didn't have any side effects from the AC maybe I'm not the best example of comparisons. I had my second reaction yesterday - about 5 minutes after the Taxol starts I get bright red, intense hot flash, blood pressure goes up, I feel light headed, and yesterday, I got the lower back pain they talk about (apparently that's from your adrenal glands trying to shoot out adrenaline). So they stop the medicine, gave me more steroids, waited for my bp to stabilize, and then started it again reallllly slowly. After reading on the internet, it seems reactions like this are not that uncommon, and some are way worse. There is another medicine, same as Taxol, called Abraxane, that is "wrapped" (preserved) differently and therefore, does not produce these reactions in people. However, it is super super expensive so Dr's don't use it unless people have severe or constant reactions to Taxol. Ahhhh, big medicine, I love you.
I know I have 10 more treatments to go (Feb. 13th, I'm stalking you) I'm hoping my side effects stay minimal. I know with Taxol they tend to show up as time goes on and the drug is in you more cumulatively, but here's hoping. Last night I was pretty wiped out and tired, but today I seem to be okay.
I know I get many thoughts and prayers from people who read this...can you keep Martha in your prayers too? We found each other on the internet after I was diagnosed, I think through Babyrabies maybe. She is almost on the same timeline I am, I think she was diagnosed a month before me when she was 32 weeks pregnant, but her protocal has been a bit different. She had a lumpectomy last week and they found more tumor than they thought was supposed to be there per her last MRI, so she went in for a mastectomy and lymph node removal yesterday too. Kind of a surprise after you think something is not there, so harder to process I think. Thanks!
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