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.

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."

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

Here.

 

Today I was sending out some invitations for my son's third birthday party -THIRD birthday! And then I started thinking how it was last year around his birthday when I started noticing the mass, and assumed it was hormonal changes from the pregnancy, and how a few weeks after that - well, you know. Amazing. Even though I realize that May will be a loooooong month of radiation, in all actuality it will probably go by before I know it. Soon my boy will be three, and I will look back on the past year with so many conflicting emotions. I have gone through hell and back and by the grace of God, maybe won't have to go there again. Through the worst crap of my life, I've watched my baby boy grow up before my eyes, and had another baby on top of that. I am here. Here to celebrate another year that my boy is on this earth, making his mark, finding his way, learning who he is and what life is. Here to celebrate with him, here for him to learn who I am and what I want for him, here to try to convey even one ounce of the weight of my love for him, here to be his mama.

Humbled.

I read an article the other day that sort of stopped me in my tracks.

http://www.bestforbabes.org/milk-train-brings-healing-to-baby-and-mom

This could have been me. I realize the lady in the story had a different cancer - IBC to this day has pretty crappy odds. But this was 1990 and they didn't give chemo to pregnant women. 1990, not 1950 or 1920, not sometime before I was born, sometime in the "old days" - 1990. I was a sophomore in high school. I was 15 years old. My surgeon has told me numerous times that when he started out they didn't give chemo to pregnant women, and I don't think he's much older than I am. To read this story drives a knife through my heart, because this could have been me. If I had not received treatment while I was pregnant I would be writing my obituary right now instead of hearing my doctor tell me she's really not worried about me at all. I had a cancer that was not felt at a 10 week prenatal clinical breast exam and 12 weeks later was two tumors totalling over 4 cm, and over 4 cm of lymph node tumor. Western medicine isn't perfect, but I am damn lucky to be able to receive it. I am damn lucky that my cancer responded to the chemo in the way that it did because not all triple-negatives do. I don't want to tempt fate, as I am very well aware that I am nowhere near the end of this process, but I am counting my blessings so far.

This time was supposed to be my redemption...

I was so excited when I was having my son. I had some trouble getting pregnant, nothing major, just a couple months delay. Then I found out I was having a boy and that was it, that was all I ever wanted, a boy first, I didn't care what came after. I wholeheartedly admit I still was not the pregnant woman who "loved" being pregnant...especially as his eventual 9 lb 4 oz body filled my 5'2" frame, and as he decided he would laugh at his due date, and as I developed a lovely and full-body case of PUPPS the last week. I had all the plans, I would cloth diaper, I would have a natural birth, I would exclusively BF....the best laid plans of course.

And then I hit 41 weeks, and went in to be induced... still was going to do natural, but probably with an epidural. Then Jack's heartrate dropped for a good couple minutes and everyone freaked out and my fate was sealed. I had a c-section. I was in tears going in, I had failed. Having that c-section broke.my.heart. For someone that really wanted to do something a certain way, and missed out on it...please, if you have a friend or whomever that goes through this, please don't go on with the "as long as you got a healthy baby, it's not the end of the world, you didn't fail, you shouldn't be upset about this." Nobody validated my feelings or let me mourn the process I had missed and it hurt. For a long time. And it was physically painful as well, for quite a while. Cloth diapers were chucked out the window - I was lucky I could manage to lift this almost 10 lb giant high enough to change him. Then on to breast feeding. Well, Jack wanted nothing to do with it from the beginning. We went to LC's, however at 45 bucks a pop, I couldn't afford to visit every time he wouldn't latch at home, which was all the time. Milk came in late, it was all a mess. So I did what I knew I could do and I pumped - for a year, through a period when I had clogs everyday, through a week or two when I would sit crying into a pillow in my bedroom pumping because it hurt so bad. I did it, it was the most and the least I could do.

So this time was supposed to be my redemption. I had a doctor that fully supported an attempted VBAC. I would know the BF pitfalls this time and be ready for them, I would do the cloth diapers because I wouldn't be healing from another c-section. I would redeem all of the guilt that I had over Jack's birth and maybe try to heal a small part of me... one that isn't there all the time anymore but certainly exists. And then week 22 came. And again, every single one of those things were taken away. Again. And it makes me sad, and it hurts. And on top of that, some of the excitement of a new baby has been robbed from me too. My husband doesn't quite get that, and in some way I think holds it against me. But I've had to face a lot of things and thoughts in the past three months, thoughts that no one in this position can imagine, or sympathize with, so I can't blame him. Obviously after all of this I want a healthy baby, with all she has gone through. But I also need to mourn all of the things that have been taken away from me by all of this, by this cancer. That's why it's so difficult to even relate to people who have fought cancer but not while pregnant... there's a whole different set of game rules that apply to the pregnant cancer set. So I can't change anything, all I can do is try to process all of this the best that I can, and come out the other side, and be proud of all that I did accomplish during this time, and try to make peace with it all - again.

time flies....

Wow, sorry, time does fly when you are very pregnant and dealing with cancer and it's the hottest summer ever. This morning there was fog when I woke up....fog! I was so happy! So, delivery is scheduled, surgery is scheduled for Nov. 20th, and then we proceed from there. Surgery is a later than I would have liked it, however, in reality it's only 2 weeks later than I would have liked.
My oncologist is convinced that is fine, and that I'm going to be fine, she is truly convinced. My husband thinks it's fine, that I will have a few more days to heal from the c-section, chill with the baby, etc etc. Me, being the one with this stuff actually in my body, logically knows that I have had a tremendous response to the chemo, especially for a triple-negative, and that my progress is very heartening, and I should "enjoy" it, if that's the right emotion, which it's not. But again, cancer is a big huge mind-f*$# and it really doesn't let you think things like that. So hopefully those days will go by quickly, and I will be in surgery before I have too much time to think about it. Or at the very least I will be deleriously tired from having a newborn and recovering from the c-section and time will pass before I know it that way. So, I guess I just need extra prayers between delivery and surgery that all of this cumulative chemo in me hangs around and things at the very least stay where they are.

Baby girl is totally ready to come out, even early. She's already pushing six pounds, she has a ton of hair apparently, and chemo has been like human growth factor for her, which I very much feel and am totally over being pregnant. Unfortunately I am not one of the those women who are "built" to be pregnant, the ones who enjoy every minute and wish they could keep the baby in them...no, that's not me. I do however, promise that I did not set up this whole cancer thing just to deliver a month early. :)

Appointments, appointments, appointments...

Days right now are full of appointments. In between now twice-weekly non-stress tests for the baby are my regular OB, oncology, and perinatology appointments, soon to be surgical consult appointment, aaaannndd...my last AC chemo today. Hopefully for a long time, like maybe forever would be nice. Then we start counting down to the big stuff, and more appointments! Ultrasound to measure how much the tumors have shrunk, since there is no baseline mammogram in my case. Full body CT scan after delivery, which is a scary thought to me - my oncologist is optimistic, but truthfully it terrifies the hell out of me. Oh my, quite the busy holiday season, and not in the way I like. But all I can hope and believe in is that at this time next year, I'll be planning a one year old's birthday party, decorating for halloween, going to the pumpkin patch and Disneyland, and looking forward to my favorite time of the year, without the worries and prospects I have to face right now. So much to talk about over the next few weeks, I just need to process a bit of it first.


Went to the Komen walk on Sunday....holy hell, was it hot and humid. One of my husband's co-workers organized a whole group, and it truly amazed me just how many people showed up for me, people I've known for 12 years now and people I don't even know! Thank you so much Karen! (pictures to follow soon)

Buckling my seat belt....

Well, after surviving the 100 degree weekend... things are going to be moving quickly soon... baby will be here on Oct. 16th, and I will be awaiting a call from the surgeon to schedule surgery soon after delivery, probably about 2 weeks later. This all seemed far away when this whole thing started and now I'm actually having to face it down. I hate to say, but this chemo has really been no big deal... now the "big deal" stuff starts. Which means I'm actually having to start realizing what I'm in for and the feelings that go along with that. More on that later.

 I'd like to really thank Jill at www.babyrabies.com for giving a shout out, and Danielle and Bettina at www.bestforbabes.org for setting up the donation fund.

Stand Up to Cancer???

I just had to get this out while the hot computer is open and I remembered...I watched the Stand up to Cancer benefit that was on every channel Friday, well, you know, because I'm part of the "club" now...I have to say, I was not impressed. Let me tell you why. For someone who doesn't have cancer, sure, all of those percentages and statistics scrolling across the bottom of the screen I guess are informative and make you want to donate -whatever. For someone who HAS cancer....what a load of bullshit. Statistics and percentages and everything else, when you are fighting this, are nothing but things to dissuade you. I refuse to look at any sort of percentage of outcome or recurrance or statistic, all that does is create noise and doubt. I have my own outcome, I had to make my own statistics since I was disagnosed, and I think every cancer patient should... no one should listen to what it typical or normal or whatever, because you are fighting your own fight, and you are creating your own belief system and you are your own person, totally different from anyone else who has fought even the same type. No doctor has the answer to what's going to happen... I've read about Stage 4 people cured of many different types and I've read about Stage 1 people having recurrances and passing. There's no way to tell, and looking at numbers just takes a little bit of power away from you. That's my opinion and outlook, and the whole thing seemed rather dour to me. I did not approve.

The summer of the devil

Seriously, I am trying really hard to keep up my good spirits, especially knowing what I'm facing in the near future, but really, this heat is just sapping every little bit of energy that I have, which is not much at the moment. Some days it's like an unimaginable task to even respond to a text or email, so please don't get offended. It truly has been the summer of the devil - I don't remember an extended period of heat like this in the 9 years we've been in this house. I pray, beg and plead for the signs of fall that everyone else is talking about to show up here, and then I look at my phone for the next few days and all I see is high 80's and 90's. Please, may mother nature show some mercy and have this break soon. Okay, my bitch fest is over... for now.

This was a very tired weekend. Between this baby, who I am carrying much lower than my son, and the interminable summer, I could barely get off of the couch. I don't like feeling like this at all, so I try to get up and at least vacuum and do dishes and stuff just to get my blood moving, but dear Lord. My poor husband is going to need a well-deserved extended vacation to himself after this is all over.