Five hundred twenty-five thousand six hundred minutes....

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.

Okay, so now what?

The denouement of cancer treatment is decidedly anticlimactic. I mean, I guess that's a good thing for now, in fact, yes, I'll take this outcome right now. But, it's like running a marathon for the first time (not that I would EVER know that feeling) and the finish line is already packed up, the balloons are down, the crowd is gone, and the clock is flashing a blinking 0:00 because it doesn't really care anymore about your finish time. Last radiation treatment is tomorrow, and then..... exactly, and then what? I mean, I see my oncologist in three months, I see my surgeon every six, I'll start talking with a plastic surgeon in a few months, I'll have a scan once every three months or so for a while, but that's about it. TA-DA!!! Talking with some of the girls in my FB group, I said there really should be a cancer treatment debriefing, like when you return from a deployment. I'm not going to compare it to coming back from war, it's just you are in the midst of all of this chaos for months and months and all of a sudden, you're not, and it's disconcerting - this trying to get to your "new normal" (another term I loathe, I don't know why, it just rubs me the wrong way).

So we will plan some small trips in the next few months - I have not been on a plane in, my goodness, two years, and that is just bizarre to me - and I will try to find work again and feel like a contributing member of this family, I will start planning a first birthday party, I will try to bear the onslaught of summer (my least favorite season), and I will try without success to push this to the back of my mind and get on with the business of living.

Radiation follow-up

Well, I was all set to write this post about the auspicious hat trick of dates when I ended my radiation treatments tomorrow on my son's birthday.. how my treatments had all started or ended right on or around important dates. But alas, I will not finish until likely next Wednesday - I am peeling too much and want some of this brand-new-as-a-baby's-butt skin to toughen up at least a little bit before the last three zap sessions so I told them I wasn't coming back until Monday. Still close to Jack's birthday, but still. Anyway, because I wanted to follow up and gross everyone out, here's a picture of what most of the peeling looks like - and this is actually good compared to what it was.

Still red on the chest and super super itchy.

 



Pretty gross...not the cool kind of peeling after a one day sunburn kind of peel, this is thick layers coming off...

 

The gross close up, so you can share my pain :)


Okay, I promise tomorrow will be a lovely post with pretty pictures and no more grossness..for now.

Updates.

My skin has degraded considerably since the last post so doing anything has been difficult and painful. It takes me enough energy throughout the day just to tolerate picking up the baby and then concentrating on not dropping her. Cannot wait for this part to be done, over with, and healed. Additionally, because I like to do many difficult things at once, like get pregnant and have cancer, baby and major surgery, etc. etc, I am also in the midst of getting ready for Jack's third birthday party this weekend. To be honest, I had no idea radiation would effect me like this and did not expect this at all, so this was just a bad coincidence.

In other news, had to mention this on the donor milk front. I have been ecstatic to keep Amelia in donor milk past six months, but have been hoping to make it to a year. I would hate for her to not have what Jack had, especially with what she contended with. But again, it's donor milk,  donated, not coming from me, so I am happy that we have made it as far as we have with her and forever grateful that Erin, my milk mama extraordinaire who coordinates this for me has done all of this work so far. That being said, we were lacking about two weeks ago, I mean down to the last two bags. All of a sudden, I don't know how Erin found her or vice versa, but this mama up in the LA area told her she had a one time donation - she had been pumping for her twins but they developed food allergies and couldn't use the milk. Erin happened to be going to a family member's graduation in the area and it was kismet. We were not, however, expecting this.

 

 

 

That freezer is filled to the absolute top with milk. There were even a few more bags that needed to go in our house freezer because the deep freeze was completely full. That should be good to keep baby going for about two months, which puts us that much closer to the year goal. Holy shamoley balls. Thank you mama, whomever you are.

 

Okay, I'm off to make more Mickey ears, which I will post pictures of along with the tutorial where I found the idea. Stay tuned.

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 :)

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.

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...

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!"

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!

You might be a redneck...

If your neck is actually red because you are apparently radiosensitive and start turning red after the third treatment! Go me! I asked my tech on Tuesday, "umm, so is it normal to start turning red already?" and he laughed and said, "nooo, we usually don't see skin changes until after week two (ten treatments). But that means you are radiosenstitive so this should all be working really really well on you!" Fabulous! I'll have no skin left, but awesome! Ugh.

Finally

I am finally starting radiation tomorrow...not that I want to. I think if I had trepidation about any part of this process, this would be what concerned me the most. But, we do what we must, and I must get irradiated like a crispy critter. So, 33 business days from tomorrow I shall be done with this part of the process and I will dance a jig. I didn't get as many tattoos as I thought I was going to get, and they are in far different places than I expected, but I did get drawn on today like a battle plan gone awry. I'm waiting for someone tomorrow to tell me I have a little something on my neck, sort of like people have told me I have a little dirt on my forehead when I have ashes on Ash Wednesday.

Off to an early morning of zappy zaps.

Blue skies....

My goodness, the sky was just an absolutely brilliant blue today. Believe me, I love a beautiful slate grey, threatening, cloudy sky, but really - who can argue with this?

USS Iowa

I mean, that's textbook California blue right there...

San Pedro harbor

 

 

The harbor water even looks amazing....

 

Can't argue with this handsome face, although he's learning to argue with me quite well as he speeds towards three...

 

Actually not terrible but as my hair - and subsequently my grey - grows out I need to get some henna going stat!






 

Overall, an awesome, fun day with the family visiting the USS Iowa. Tomorrow I am off to get mapped, which means I will be having another CT scan to determine where the radiation beams will go and will be tattooed in those spots. Not the next tattoo I was looking forward to, but nonetheless...