Breast Cancer is not the "easy" cancer...

As the 4th was World Cancer Day and many cancer awareness campaigns are being done this month, a few ummm, interesting, ads have shown up...like this one from Pancreatic Cancer Action...

 

 

 

Well, hip hip hooray!! I didn't even know that I won the cancer competition when I was diagnosed, at 37, with Stage 3C cancer, while pregnant!! How silly I was to be concerned, because we all know that everyone with breast cancer lives! It's like having a cold!! Hooray for me!! Phew, I had no idea that I can relax now, without a care in the world for what might happen to me, because I GOT THE EASY CANCER!!

 

Excuse me for a minute but WHAT THE FUCK?? I wish I had breast cancer?? I understand, believe me I do, that pancreatic cancer is no joke and has a very high mortality rate. I completely get that. But maybe you'd like to talk to some of the girls in my facebook group, who are in their 40s and fighting stage 4 breast cancer. Maybe you should talk to the 32 year old mom of two littles that I went to the August retreat with, who is fighting stage 4. Maybe you should talk to me after my 4 rounds of chemo while pregnant and my resultant mastectomy and my 12 rounds of chemo after that and my 33 doses of radiation after that and my constant numbness and pain and tightness that I deal with every single day. Maybe you should talk to me after I dealt with the plastic surgeon who basically insinuated that I was probably going to have a recurrence any day now and really shouldn't bother to look into reconstruction right yet because really, I may not be here long enough to enjoy it.

 

How about I wish there was no cancer? How about no more deaths of any type of cancer? This is not some sick kind of competition, this is something that everyone should be in together. Because with crap like this, we all lose.

 

 



To those who comment on my Christmas posts...

Christmas 2012

To those who have commented on my admittedly prolific liking of Christmas pages and talking about Christmas songs and basically my overall overexcitability about Christmas this year...with no malice in my heart and the best of meanings...stuff it.

I don't comment when people post 45 political posts in a day, or share 18 ramblings about how they hate Christmas. I don't comment about people and their 52 pinterest ecard posts about wine. Yet for some reason people feel compelled to comment on my sharing of what I feel is joyful...yes, it may be early - yes, I truly realize it is not Thanksgiving yet, but you know what? I effectively missed the holidays last year. I was there, but I wasn't there...I wasn't able to fully participate. I saw my kids, but didn't get to fully experience Jack's 2 year old wonder at the lights and Santa and stocking and elves. I had my two month old, but I was so busy taking care of her, and recovering from two surgeries, and going through chemo that I didn't get to soak in my baby girl's first Christmas. I didn't get to decorate, I didn't get to sing carols at church, I didn't get to feel Christmas. I didn't get the luxury of Bah Humbugging it because I was praying too hard to make it to this Christmas.

So forgive me for my giddiness, for my wanting to share the fact that I am happily and unabashedly overcelebrating the holidays this year. Forgive me my liking of many many Christmas posts, of snow and trees and wreaths and candles. Forgive me my inability to throw away any precious holiday that I am given with my children. I don't begrudge you your existence in the benign and blissful obliviousness that total health brings. I used to live there myself, but I have moved...and at my new address, you will find me overcelebrating most anything I can.

Decorations...

"Delicious autumn! My very soul is wedded to it, and if I were a bird I would fly about the earth seeking the successive autumns." - George Eliot
 

I was getting out my Halloween decorations today and realized I hadn't seen my things in TWO years, not just one. That amazed me, and saddened me, and at the same time filled me with joy because I get to see them again and I was overjoyed - I'm not kidding, I adore my Halloween decorations. I love Halloween and fall - I LOVE them. I stopped and thought about where I was last year right now and also realized that last year, today, was my last A/C chemo. I was heavily pregnant and bald, too big and tired to even attempt decorating or celebrating my season, and waiting - worried - about what is now this teething, extremely loud, hilarious, beautiful and healthy little monster - the one who has smile at times that is simultaneously hysterical and the epitome of pure bliss.

 

 

So as I went through my multitude of Halloween boxes in the garage and found forgotten treasures, I was able to look back at the past year and remember where I was - which is a feat considering my short term memory is still shot - and see how far we have all come, and breathe it all in, and smile like my girl.

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!"

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

Watchers.

I believe that I have family watching over me. I always have. I've been the kid that wanted to be able to talk to and see ghosts for as long as I remember but alas - never happened. But I truly believe that all of the family that went before me, even those I never met, watch over me, and they are in charge of different things. One time in boot camp (don't get all Alyson Hannigan on me...I said boot camp, not band camp), I wore the wrong boots. In boot camp, that is not a fashion faux pas, that is a major infraction and I was terrified when I realized my mistake. I sent a request up to my cousin Johnny, who was a Marine killed in Vietnam when he was 18, 6 years before I was born, to please let the drill instructors not notice my boots and to let me be able to change them unnoticed. The DI's looked around to make sure we were all in our IBC boots, which I was not, I was in my jungle boots, and.... they didn't notice me. I was able to safely change my boots without having to go to the quarterdeck and I fully believe to this day that was Johnny's doing. I have many many watchers (I'm not quite sure most of the people in my family can be referred to as angels :) )

I started chemo on July 23rd, my uncle's birthday. I finished chemo today, February 13th, two days before my grandfather's birthday. These were the two men I was probably closest to for most of my formative years. My grandfather was my everything for a very long time. I idolized him until I grew a little bit and realized he was just a person with person faults and foibles, and lord knows I did not like some of his viewpoints and let him know it. We were the only two Aquarians in a family of Leos, so we had to stick together from early on. I can only imagine had he been able to meet my kids. He would have loved Jack but he would have been enamored of Amelia. My pop-pop died an exceedingly painfully slow death of stroke induced dementia - it was a long long ten years that I would never wish on anyone.

My uncle on the other hand, we could fight like cats and dogs. He was 18 when I was born and mentally probably a generous 16 so we sort of grew up together as a weird brother/sister kind of relationship. Oh, that man irritated me something fierce quite often but we shared many adventures and he loved me more than most, of that I am sure. He died of complications of type 1 diabetes that he had for over 40 years.

I know they have been watching over me and I pray that maybe since they helped the first chemo work so very well, they helped this one work as well too, and will help the coming radiation zap anything it is supposed to. I pray that even though I know they would be so happy to have me, they know that I am so very needed down here for these two small children. I pray that my Aunt Elaine, who I loved so much and who was so fearless in her younger days knows how much I have to do and want to do and and sends all of her goodness down into this medicine to make it work, and sends me the strength that she had in her painful older days. I pray my cousin DeeDee, who I know so desperately wanted to see her own 5 kids grow up, knows very well that 38 years, while generous compared to some, is not nearly enough time, as it wasn't for her, and sends her faith and good thoughts to work down here. I know that they, and all the others up there, know that I have many many more promises to keep, and so many many more miles to go before I sleep.

Healthy?

I went to physical therapy today just to see what I could do to get this last bit of motion back in my arm and to get any pointers they had for keeping loose during radiation. I also wanted her to see this Madonna tendon I now have - you know those gross tendons that stick out on Madonna's unnaturally ropey underarms? Well, I have that under my arm now and it is about freaking me out. Anyway, the physical therapist made a comment that took me aback but was actually something I've been thinking about lately. We were talking about something, I think future exercise, and she said well yes, you're young, you're healthy. And I almost burst out laughing because you usually don't refer to cancer patients as healthy I'm guessing. But last week when my husband and entourage (kids, strollers, dogs) were walking home from our afternoon walk, and I was doing my fast walk, I said "Hmmm, if you didn't know me, you wouldn't think I have had two major surgeries, am in the middle of chemo and have cancer, huh??" Because honestly, I feel like the healthiest sick person I know. I walk most days of the week, the only tired time I have is chemo night from the benedryl (well, other than being tired from two kids, but that is what it is), I've not had nausea, vomiting, pain, anything really other than lost hair, some thinning of my nails, and, well, actually that's about it. My blood pressure, when I'm not on this chemo, is pretty low. My weight could use a lot of work, but I'm not even starting to attempt anything until I'm off of these steroids. I eat relatively healthy and am getting better and better. I rarely rarely drink and since I've been pregnant and on chemo in the past year, I haven't even had one drink in at least that long. I don't smoke unless I'm in Europe, which has not been since 2008 (that needs to be remedied). Other than this cancer thing, I am actually pretty healthy. It's just a juxtaposition I still can't quite wrap my head around.

The Infusion Center

When I go to chemo, it's not like in the movies. We don't all sit together, yukking it up and sharing pot brownies. (Ummm, yeah, the movie 50/50 - good movie but no, you don't sit in a school circle and seriously, where are my pot brownies people? I have never seen anyone leave a batch by the coffee machine and I must say, I'm a little perturbed by that. I brought in cupcakes two weeks ago but there was nary a bud in the batch.) You each have your little partitioned "room", people sort of look at each other as they pass by but that's about it. I do know all of the nurses by now and joke around with some of them, last week I was almost crying because this older gentleman was singing. I asked my nurse, Is someone singing? She goes, I'm so sorry, he has to sing or talk, he says it helps him infuse better. We were laughing so hard we were crying - I don't know, things are weirdly funny in chemo.

I guess that's why what I saw last week troubled me so much. When I go to chemo, granted, it's still mostly older people. Everyone is obviously there to get some sort of infusion - chemo, blood, platelets, whatever - so everyone has something pretty seriously "wrong" with them. But honestly, I've not really seen any very "sick" people. Older, slower people yes. But very sick people, no. But last week a gentleman walked in with his wife, girlfriend, not sure - a female companion. I'm guessing they were maybe a few years older then me but this is Orange County, so honestly the woman could have been anywhere from mid-30s to mid-50s. And I could tell that he was very sick, and it almost broke me. Looking at me, or most people, you can tell we have cancer by the hair, but that's about it, you can't really tell what kind with most people. This gentleman looked distinctly like he has some sort of brain cancer - it hits your eyes and face in a way others don't - and I could hear him talk - very muffled, slow, and difficult to understand. And it made me so sad, because I could see that the lady with him loved him, and that this was not a good road he is on, and honestly, it brought death into a room that spends its days fighting it. And I caught my nurse's eye as she went in to prep him for his infusion, and I could see it in her eyes too. And I pray for him. And I hug my kids close and I thank God for allowing me to put up a successful fight so far.

Hot in here...

Not only do I not get to partake of the wonderful caloric benefits of nursing this time around, the steroids I get make me gain weight. It's so much fun to go to chemo every week, get on the scale, and see a pound higher. So I get to be disfugured, post-partum, fat, and on top of it, really frickin hot! I don't know if this is a common side effect or not, and this is not hot flashes, this is "I feel like it's 95 degrees all the time, regardless of whether it's 78 out like it has been the past two days, or whether it's in the 30's at night". Fun! I am literally kicking off sheets and sweating when it's about 55 in our bedroom at night. I am convinced the baby is burning up because I can't quite get the fact that it's only me that feels this and that everyone else is feeling rather wintery (well, minus the past two days). Thank goodness my hair is growing out and if I'm feeling rather kicky I can go without a hat because when I go for my daily walk I come back and am sweating through my inch of hair.

Okay, that's enough complaining...what I'm thankful for: that those same steroids that are making me even fatter seem to also be keeping at bay the lovely cooties my son has been bringing home lately; that I truly hopefully only have three more weeks of dealing with this picc line because we are just not getting along anymore; that we do have a relatively easy baby with all of this other stuff going on, and that her sweet face and smiles give me something to look forward to.

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.

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!

Happy New Year!

2012 - Words that worked their way into my personal lexicon this year -

biopsy
infiltrating ductal carcinoma
stage 3
triple negative
axillary lymph node dissection
chemotherapy - AC and taxol
radiation
mastectomy
BRCA
donor milk
my daughter

Words I knew before but had to relearn-
friends
family
neighbors
help
kindness
prayer
visualization
acceptance
accepting
support
relax
breathe


On this last day of the year I throw up a prayer and wish for all of us, that this coming year is full of possibilities, victories, adventures, joys, love, and health. Let's put a close to 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!

Onward and....onward.

I won't say upward until I can actually move my arm upward. But, onto chemo round 2 as of yesterday. Let's just pray and wish that I tolerate this one as well as the last. Taxol has some different side effects, including temporary peripheral neuropathy, some bone pain, and of course fatigue. I'm hoping to just have those pass on by, or at least be minimal. Oh, and hair loss of course, so the very short buzz cut I've got going on will fade again. Oh well, it's winter, I'm enjoying my hats.

This is my new medical accessory for the next 12 weeks.

So the surgeon said I may never get the feeling back in the back of my arm or under it. As he said, "The body's just not meant to be cut." He obviously was very careful not to disturb the big bundle of nerves that control my arm and hand, but there are small nerves all over that can't be avoided when removing the lymph nodes, and those apparently hit the back- and underside of my arm. So we'll see what happens. It could, it could not. And as anyone who has any sort of numbness or neuropathy anywhere knows, numb isn't really numb, it's a combination of numbness and hypersensitivity. Which blows. And of course it may take quite a bit for this whole left side pain, stiffness, restricted movement to heal. But what I have come to appreciate after dealing with this pain, and it is painful, is that I have been so lucky to have 37 pain-free years so far. Some people never know a life that doesn't have physical pain in it, and after dealing with this so far, that just breaks my heart. Because, from my mouth to God's ears, my left side will eventually heal, the PICC line will come out, I won't be on chemo or radiation anymore, and will heal for the most part. And I will remember what it's like to have pain everyday but not have to experience it anymore, and I will be grateful and empathetic.

Not so special.

My status as special cancer patient was officially terminated yesterday when, while waiting for my oncologist to come in the room, I heard her down the hall ask the aide "Is there a baby in there?" She then came in and said, "Where's the baby?? I know, I'm a bad doctor, yeah yeah how are you? cancer, blah blah, whatever, where's the baby??" I laughed and told her baby was waiting in the lobby. And then I said, "ahh, yes, I'm no longer the special cancer patient am I?" Oh well. My OB had already gone out to the lobby to see her that morning, and my oncologist followed me out that afternoon. She is as much a product of their hard work and concern as mine. Well, maybe not as much, but they certainly all felt a great stake in her good outcome and are so happy that she is absolutely perfect and has no ill effects.

Lots of follow up appointments yesterday. OB follow up went fine. First follow up to mastectomy surgery went fine, had the drains removed (thank goodness, but good lord those do not feel good coming out, in fact, it really hurts quite a bit), another follow up next week. Visit with my oncologist to go over pathology report from surgery and get chemo regimen started back up. Pathology report was good and okay. Everyone was totally happy that after the tissue was reviewed, it turned out the only tumor left was 0.4 cm. That was from two large tumors that totalled about 4 cm of tumor. That was it. When she said that, for a split second I said son of a bitch, I didn't really have to have a mastectomy and go through all of this? But then my rationale took over. I did need one. The way my cancer was so aggressive and grew so big so fast, it truly was the best option. Plus they did find a few pre-cancerous cells so I likely would have had to have to the surgery eventually anyway. So the chemo worked great on the two large primary tumors. The okay/not so great but it is what it is news was that of the 10 lymph nodes I had removed, 5 of them were positive for cancer. And that was after chemo. So chemo certainly shrunk them, but it's not the best of news that so many lymph nodes were effected, it's just what happened and what we are working with. So this chemo coming up next week now just needs to concentrate on the small lymph node in my neck that has already shrunk (send good vibes that it attacks it once and for all and just kills it) and any cells that had sloughed off of the lymph nodes and are possibly traveling around. Kill kill kill those few cells that are left. And then on to radiation that will zap those areas and hopefully terminate those cells.

This surgery was no joke. It has knocked me on my ass. It's the first time during this whole process that my sails have collapsed a little bit. Granted I did have two pretty big surgeries in less than a month.  My arm is still pretty useless. The nerves are coming back so at times I have areas of skin that feel like sandpaper rubbing on a sunburn and there's a place deep in my armpit that hurts so bad if I move a certain way it takes my breath away. Mornings are absolutely not fun because what little range of motion I have stiffens up overnight. So I'm just praying for the ability to deal with it, and to slowly get better. Could use all of your prayers and good thoughts for that too.

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. :)

Grateful.....

So my husband and I were sitting in Ruby's waiting for our lunch to come before my chemo today, and of course we, like a good married couple, are reading our phones and conversing sporadically. I checked facebook and saw this.....


http://www.babyrabies.com/2012/09/i-tied-a-wish-in-the-wind/


and then I burst into tears while waiting for my salad... and my husband goes what?? what's wrong??? and takes my phone and reads it and says, in typical man style, "oh cool, they went ziplining!"  That's really all I can say about that, because there aren't many words.


Here are some pictures from the Komen walk on Sunday...again, don't really have words for this whole group of people who showed up... for me? It all still sort of boggles my mind.

My husband and son, walking for mama...

 

 

Thank you again to everyone who came out... thank you to those who keep me in their thoughts from afar, thank you for every good wish and prayer that is sent out. Thank you isn't enough, but it's all I can offer right now.