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.

Merry Merry.

A very Merry Christmas from my family to yours. Wishing you every peace, blessing and goodness tomorrow can bring.



Two months.

 

 

Two months old. Two months of late nights, early mornings, surgery, slow recovery, three rounds of chemo and blood draws. Almost the end of this ridiculous, "I never want to live it again" year. To my family and friends, I promise to celebrate Christmas like normal next year, probably even a little over the top. To Christmas, just like Halloween, I wholeheartedly apologize for not being able to give you your proper due this year.

It's such a "beautiful to me" day today - overcast, raining off and on, steel gray clouds the color of Jack's eyes when he was a baby. It could be 10 degrees colder, hell, it could be snowing, but I will take what I can get. The tree in my front yard is still a firestorm of colors - the leaves change from the outside in, to orange, gold, red. Who says we don't have any changing colors in Southern California? There is so much to do, so much to see, so much to experience. I feel like running into next year.

It so broke my heart that one of the first little ones to be buried was named Jack. I can only send up  prayers for peace and healing for their familes, hoping Mary doesn't get tired of my relentless communications this year as she has been my chosen conduit, for I know the children are ok. These children, who were cheated out of their life here, will be forever who we aren't, they will be innocent and pure and good.

Crunchy leaves.

I was a nerd. Not like a nerdy-nerd, but I loved school. I'm referring to elementary school mostly - high school and I weren't really friends. But I can still feel what it felt like to look forward to "new" every year, new backpack and lunchbox, new pencils, new things to learn, new pages to unfold. New came in September, not in January like it does for the adult world. And after the unbearably hot late summer that Southern California always suffers passed, the brisk, bright leaf-filled days of fall would come, Halloween songs would be sung, Thanksgiving hand-print turkeys made, and finally cotton-ball Santas would be produced. I still remember the feeling of leaves crunching under my feet, fall art projects in my backpack, school bake sales taking place. I feel bright and happy, full of life....and safe.

I don't know what to do with what happened yesterday. Honestly, tragic news happenings happen everyday and they don't usually affect me. I'm honestly not the most sympathetic person in the world, it's just how I am. It's not desensitization, it's just that I know shitty things happen to people all the time. But this, this hit me. Ever since I got pregnant with Jack, the one thing I have most looked forward to is him starting school. It keeps me going these days, knowing how badly I want to see him on his first day, experience the things that he will learn, new discoveries. I want him to have bake sales, friends, songs, phonics, spelling, new backpacks and lunchboxes, proliferating art projects. I want him to be safe.

I can't say where I stand. I grew up in a family of hunters, I'm two generations removed from a farming family. I grew up with guns in the house, and God-forbid, they were kept in unlocked closets and dresser drawers that I can't remember ever not knowing about. I just always knew never to touch them. My husband and I were both in the military, schooled in weaponry, we do keep guns in the house, however they are in a locked safe. We both enjoy shooting as a hobby and as a means of protection. We are both safe, legal weapon owners. Would I give up my guns to bring back those kids or to keep Jack and Amelia safe forever? Dear God, in a heartbeat. I am so very sad. I'm trying so hard to keep myself alive, it never dawned on me I would have to think about keeping my babies alive doing something so ordinary. They deserve to have crunchy leaf memories.

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!

I'm not superwoman.

Holy goodness - let me just say I do not recommend sitting in a car for over 6 hours and trying to make it through a 12 hour day less then 3 weeks out of this surgery. We had a family funeral on Friday, about 160 miles away from where I live. Luckily I was able to ride with my cousin, because physically I could not have driven that far. But just the sensation of clothes on skin, being jostled for 12 hours, caused a huge nerve pain flare-up that took me all weekend to  recover from. I'm so glad I was able to go and see family I hadn't seen in years, and have them see me and see I was alive and kicking, but goodness, did I pay for it.

I've had many people, after hearing the story or asking how I am, say wow, you're a superwoman. No, I'm not. I'm just trying to slog through this like anyone else would if they were faced with it. I'm just counting the weeks down, trying to see the light at the end. I am relying on the help of family and friends and strangers too much to be a superwoman. I do it because I have to, because that's what you do in life, you go forward, you get through. Did I seem to get a heaping spoonful of crap all at once? Sure. Am I tired all the time because I have an infant and a 2.5 year old? Yes, for certain. Am I in pain? Affirmative. Do I most probably have a harder time of this then say a retired grandmother who gets to recover while watching "The Price is Right" (please do not take offense retired grandmothers)? Yes, I do. But a single mother fighting cancer who works and has no health insurance and has to provide for her kids has it harder than me, she's a superwoman to me. I guess it's all what side of the fence you are on, but I, like everyone else, am just trying to make it through, because there's no other option. Well, I guess there is another option, just not a fathomable one. I'm not a superwoman, I'm just a woman, putting one foot in front of the other everyday - sometimes just closing my eyes and hoping today falls into next week then rolls into next month and praying next year appears before me in a better light.

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.

Thankful.

This is a struggle for me to write. Not because I am not thankful for things, but because not only has my body been broken, my spirit has honestly suffered a few cracks. I am trying to recover not only in body but in soul too.  So I think it behooves me to find what I am thankful for to bring a bit of light into the darkness.

This year has sucked. I will never be one to say "I'm so happy I got cancer, it changed my life!" Honestly I think I could have learned the lessons another way. But I did receive a wonderful blessing in this little bundle of perfectness, even though I do think about selling her at three in the morning. We are blessed that she was healthy and strong and big and seems to have suffered no ill effects from mama's illness.

 

 

 

 

 

This little boy is my heart and soul. I am beyond belief that I get to be his mother and watch him grow into a little man. 

 

 

 

 

 

I am thankful for the man sitting beside him, that has stuck by his broken and battered wife, celebrating when I am strong and trying to put the pieces back together when I break.

 

I am thankful for my mom, who has put her worries into cooking good food for me. I am thankful for my in-laws who have come out here during my surgeries to help with whatever I needed and more. I am so thankful to friends and family who have come over here to help in many different ways, who have taken time to just ask how I am, who have sent up prayers and good intentions. I am thankful for my doctors who have followed me so closely since this started, who cheer for me. I am thankful to the cyber community, who came together to help me feed my child.

 

I very much realize that there has been light in darkness, joy in despair, goodness in a pit of cruelty. I send up a wish for next Thanksgiving, a wish for a lighter heart, a wish for less worries, a wish for good health. I wish that for all of you as well.

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.

One month.

 This baby girl is a month old. I cannot believe it's been a month, and I can't believe what we all have made it through in the past month. I am still very much recovering, and am very frustrated at how much I can't do and how much I have to rely on others. I knew I would not really be able to use my arm, but knowing it and living it are two different things. The changes in my body - I can't come to terms with those yet.

Situation report...

you'll have to excuse all typos and grammer mistakes, I can only type with my right hand, and on top of that i am left handed....I'm back, i'm home, i'm alive. i don't recommend this surgery as a vacation or anything but I guess as far as the surgery can go, it went as well as it could. nothing unanticipated happened or was discovered. i feel like i have been beaten hard with a baseball bat under my arm, which the doctor said was a very apt description. again, i was told i looked fantastic (i really want to know what i am supposed to look like, because seriously, i've never been told i look fantastic so many times in my life as since i've been sick...hmmmmm) i have two drains in, although am not draining a whole lot, which is good. i was up walking about 2 hours after surgery, although i will admit, i woke up in the recovery room crying in pain. i guess whatever they gave me finally caught up after that and it hasn't been terrible since. so basically, it is a sucky surgery, i don't recommend it, but it is manageable, considering i had all of my lymph nodes removed.

i have to thank all of the friends who have dropped off food, that has been so helpful. and i do have to give a shout out to the nurses at Kaiser Sand Canyon - between my nurses for the c-section and my nurses this week, i have received awesome care and everyone has been so nice which always helps your hospital stay. and finally thank you to the mama's who are feeding my baby...it's working well, at baby's 3 week appt she had gained 1.5 lbs and grown 1.5 inches!

onto more resting and healing and slowly getting my arm back! thank you for all of the good thoughts!!

Alone.

I got to see a lot of my cousins yesterday and that made me so happy - to laugh and be loud and sarcastic and pick on each other like only people who have known you your whole lives can . I saw one cousin I haven't seen in 6 years, as he lives in Switzerland - it was like he has never been gone, and others I haven't seen in a few months. I met some new lovely poeple. Everyone is obviously very concerned about me and will think of me tomorrow during surgery, but it really just brings home the fact (and I don't mean this to sound as depressing as it's going to) that as much as I have support around me, I am going through this alone. Please don't misunderstand, I am so grateful for the help that friends and family have provided and the thoughts and prayers that others have sent and shared, and it has been so helpful, especially with two small kids. But ultimately, no one else has this cancer in them. No one else can go into the operating room for me tomorrow or give up a body part for me. No one can have the thoughts I do, no one else can be scared shitless for themselves. It's all me - I am the only one who can go through this and get through this. It's a lonely scary feeling that no one can assuage - I truly wish they could. I know what it's like to love somebody so much that you wish you could take their sickness on yourself - now I also know what it's like to be the sick person and know that no matter how anyone else feels, it's only me in the boat.

I sang today...

Okay, I'm over it. I needed to write that post and get it out of me. But no more tears (well, maybe a few more, in the shower, where no one can see them). I will put on my big girl panties - which I'm actually literally wearing considering I gave birth less than a month ago - take my interim fake poof pads (I swear that's what the lady called them yesterday) and move on with this whole thing. I will move on to more chemo, which I understand and can process, try to ignore the radiation topper on the cake, and focus on the fact that I have an amazing 2.5 year old at home who's new favorite phrase is "Ohh nooooo" in a voice that makes me both double over laughing and melt at the same time, and a beautiful, perfect infant who I can't wait to watch grow and learn and sleep through the night.


I can't sing when I'm pregnant. Doesn't work. And this pregnancy unfortunately didn't lend itself to many feelings of attempting any joyful rounds of song. But I sang today. I sang along with a CD while Jack ate dinner, and I remembered that I can sing, and that it makes me happy, and that I have a voice. That my voice is still strong and it still has a place, and it has promises to keep and miles to go before it sleeps.

Pre-op.

Please do not read this post if you are offended by language or my discussing my body parts (i.e. those few male friends/relatives I have reading this who probably don't need to know such things)

I have had to write this post for a while, but desperately not wanted to. Monday I signed a consent form allowing for surgery to perform a modified radical mastectomy and removal of all left axilla lymph nodes. What an ugly ugly statement. What a shitty thing to sign away permission to remove part of your body.

I never thought I was "that girl". I have had a love/hate relationship with my boobs almost since I've had them. I didn't develop early, but when I did, I certainly caught up - I was a D until I had Jack, when I turned into a DD for the past 2.5 years. I'm also petite, I'm barely 5'3", and during my good years, around 120, so carrying that much on top brought attention quite often. I'm not going to say I never used it to my advantage, in fact I know for certain that I got my first job because of my boobs. No, nothing dirty, I was 16 for goodness sakes, but I was informed a few years later by a friend that when I walked into Sam Goody looking for my first job it was not my sparkling wit or non-extensive music knowledge that won me the minimum wage prize - no, it was my rack. However, far more often these things got in the way. Many forms of excersize have long been uncomfortable, and clothes have often not fit correctly. There was an apparatus on the O-course in boot camp that was called, jeez, I can't remember the name, something along the lines of the son of a bitch, something like that. Anyway, it involved mounting a large round log about 4 feet off the ground and then jumping to another one about 3 feet away and a foot or two higher, with your upper body taking the brunt to grab on... I still distinctly remember the feeling of catching a giant log with my chest taking the brunt of it, that was over 12 years ago. Needless to say, I personally could never understand the concept of a boob job - why on God's green earth would people choose to make their chest bigger?? I would choose to be smaller in a heartbeat.

Now I am less than a week out from having a breast removed. I never thought I would be affected like this. I know there are women who have even refused to have a mastecomy and have lost their lives because of it, and that just confounded me - how could you choose to lose your life over something I've spent a good part of my life wishing away? When this whole thing started, the tumors and inflammation were so large and extensive that my breast was almost deformed. It was uncomfortable to wear a bra. I wanted nothing but to have this thing, this thing that had betrayed me and was no longer really a part of me removed as soon as possible. But after the chemos, all inflammation has gone away and the tumors have shrunk so much that I look and feel pretty normal again... it looks and feels like nothing is really wrong, and now I'm pissed off. I'm so angry that I have to have this surgery, and worse than that, I'm embarrassed, and that kills me, because there is nothing to be embarrassed about. But the fact that I won't even get a prosthetic until after I heal is just totally and completely humiliating to me. Why, why should it be? If I was having an arm or leg amputated I wouldn't be embarrassed to have people see me. And that really pisses me off even more, that I feel like that. This all of a sudden really fucking sucks to me. The chemo I could handle, the hair loss, really no big deal to me at all. But this, this really fucking sucks, and the fact that I feel that way makes me even more angry.

I'm 37, I shouldn't have to deal with this now - but neither should most other people. I expected this, this cancer, but I expected it in about 20 years, and much less agressive. I've never asked "why me?" because that's just dumb...good and bad things happen to good and bad people all of the time. I do not believe God made me have cancer or anything like that. Have I maybe asked a few times why other people don't have it instead of me? Perhaps I have, I'm not a saint. I perhaps have asked why my uncle who has been an alcoholic and smoker for the past 40 years and mooched off of my grandparents for the past 8 hasn't developed this. Again, I'm only human.  But it's the intensity of the feeling about this surgery that has blindsided me. I don't want to feel so much over this, to give it so much power and thought, it doesn't deserve the time and energy. So many people deal with things that are much larger than this.

I will get through it, I will learn to live with it, but it will always suck, and I am still very much pissed off about this. Hopefully I can come out on the other side using this anger for something positive - I guess only time will tell.

Cancer moms sweeping the nation...

I guess it's like when you get a new car, you notice all of the same kind of cars around you. I swear, before I was diagnosed I had not seen a single news story, article, TV segment, anything addressing pregnant women with cancer. In the past few months I have seen quite a few things, segments on the Today show, news articles, medical studies about chemo while pregnant, etc etc. Bonnie contacted me through Jill @ BabyRabies and Best4Babes about writing an article and here it is! Bonnie writes a lot about milk sharing, pregnancy issues, etc, and I had a great time talking with her.


http://healthland.time.com/2012/11/02/breast-milk-donors-coming-to-the-rescue-of-new-moms-with-breast-cancer/

Happy Halloween!

To my most favorite holiday - I apologize for not being able to celebrate you as I normally would. I promise to have the strength to make it up next year.

Excuse my grimace...my knees and pavement don't mix.

 



And to all a happy halloween!

The cost of cancer (my cost at least)

Literally and figuratively. Obviously different for everyone depending on income, insurance coverage, employment status, etc. But here is how it is effecting us presently. We are the family that never gets sick. Jack has been to the doctor only for regular check-ups, had about 3-4 colds so far in 2.5 years. My husband had minor nasal surgery about two years ago, that's it other than sheck-ups. Me, I've been in the hospital to have Jack, but other than that, prior to all of this, yearly check-ups. We are not the family that enjoys going to the doctor for every little thing. Therefore, I usually choose the low monthly payment insurance, with higher deductible, because hey, we are healthy! We never get sick! And if we do, we chug some nyquil, get a box of lotion tissue and we are fine. Well, apparently I didn't knock on wood hard enough this year. Because here we are.

I was laid off in July 2011. I worked a bit as a contractor from Jan-Apr 2012, but then work slowed down again, and I was pregnant. Still looked for a job, but starting to show pretty early, who in all reality is going to hire a pregnant lady? Anyway, then July 13th came and really, hire a pregnant bald lady who needs a lot of time off for appts and chemo? Yeah, and I'll be waiting up with Linus for the Great Pumpkin tonight. So what I'm saying is we have been on a limited income for a while now.

Few facts -
- Yes, I am really really lucky that we have any type of insurance.
- Yes, I am really lucky my husband has a pretty decent job, and co-workers who have known him forever and known me for about 12 years, and have been very understanding of him needing sporadic times off.
- I pay co-pays for almost everything, and $10, $20 or $50 adds up considering how many procedures and appts are needed. The first time I had chemo and they told me no co-pay I was like holy shit! Free chemo! Sign me up for all I can get!
- Some tests are not covered by insurance. The BRCA test, which determines if it was a genetic mutation that caused your cancer, is not covered. All tests, nationwide, are processed by ONE lab in SLC. I've seen a few different numbers for the test, but my cost was $3095. For one test. Which in my case goes towards my high deductible. But goodness, what if you didn't have insurance or couldn't afford this? This test shows your chances for future ovarian cancer as well. Crazy.
- Add in whatever costs for surgery (I am truly hoping after we meet the deductible most will stop but I know we will be hit up for more. That's just how it works.) and what we just paid for Amelia's birth, and we definitely feel it at the bank.
- Increased child care costs - when you have small kids, as in a very active toddler and a small new baby, and you have multiple surgeries in a month and a multitude of doctor's appts, and chemo and radiation after, you need a lot of help. Therefore, your childcare costs increase. Just another expense to add to the pile.
I'm not going over all of this say woe is us. But it is a fact, illness has a definite monetary cost. This is in addition to the not-so-tangible costs - my time away from Jack, his confusion about all of the things that have gone on, the mental games this has played on both my husband and I, the constant fear you live with when you have cancer, the things that potentially could happen - it's all a "cost". Amd there's no way to budget for the end of it, you just have to live with it on your spreadsheet.

hmmm...

I'm not even sure what to write about. I have way too many thoughts running around my head and hormones running through my body right now. Too many worries, about both big and little things. Worrying about health, money, family, all of that at once while trying to deal with post-partum hormones is just a little bit overwhelming.

Ah ha...

A week ago today (a week ago!) as I sat on the operating table waiting to get my spinal, my OB, who is the one who delivered my diagnosis to me,  walked up behind me and sort of hugged me and said, "When did you get that tattoo?" in a sort of very heartfelt way.  I forget about my tattoos, as I'm sure most people who have them do, but they do seem to provide much entertainment and conversation for most of the medical personnel I encounter. Anyway, without thinking, I said oh, a couple years ago. And then a few days ago it dawned on me why she asked it in such a way. I have a rather large backpiece composed of flowers of all of the nationalities that I am, and it's surrounded by the quote from one of Robert Frost's poem - "...but I have promises to keep, and miles to go before I sleep." And I do.

Some picture catch up...

It's football Sunday, I'm still healing, so we have pictures today...I do feel 100 times better than the first c-section go around, but it's not like I plan on doing the tango anytime soon.


Big brother meets little sister

 

My perfect little chemo baby....

 



Waiting for the game to start...my Ravens failed me this morning so this one had better be better than last week!



In sickness and in health.....

Today is my husband and my 10 year wedding anniversary. Not quite the way we thought we would spend it, his bald recently-pregnant and cut-open wife recouperating at home after delivering our new daughter a month early due to a life-threatening illness. That's why said wife sits here patting  a three-day olds back for some burps of milk that didn't come from her, but from some other generous mamas. That's why said husband prepares to have his wife cut open again in less than 4 weeks, body parts and nasty tumors to be removed from a 37 year old.  But, what are you going to do? No one ever thinks they will be in certain positions but we are, and that's okay. We will get through it, so that on our 20th anniversary we can properly celebrate.

She's here.....

Amelia-Rae Faith Thomas was born at 1:41 pm today...7 lb 4 oz, 18 inches... and that is a month early! Crazy. I feel - well, like I had a c-section, but not terrible, yet. That will be tomorrow. But everything went as well as can be expected, no problems.

 Fam self-portrait.

Not a great hospital pic,  we are fighting dead batteries in the camera.

 

Little bit of fun....

One of my good friends threw me a baby shower yesterday, small, with mostly family. She had to convince me of it, but I am glad I said yes because I got to see some cousins I hadn't seen in a very long time.



The totally awesome cake my cousin designed for me (and got strange looks for from the bakery when they found out it was for a baby shower)

                                   

Wishes for baby girl...

Me with some of my very tall cousins...

Thank you Laurie for throwing such a beautiful fall shower, thank you Wendy for helping her,  thank you to all for coming....a little normalcy at a very abnormal time.

Lovely day...

The weather is beautiful! It's finally like fall...even though it's supposed to be back up to 80 something next week :P I will enjoy today. I went to my c-section pre-op appt today which consisted all of checking my heart and lungs to make sure I was alive before surgery. Twenty dollar co-pay for that (will be doing a post soon about my cost of cancer). Then I ran over to the bookstore - ummm, well, waddled slowly to the bookstore - to see if they had anything interesting and fall-y that I could take to the hospital, and then ran over to get a sandwich at Boudin's that I had a coupon for. When I handed the cashier my card to pay a gentleman ran up behind me and said I want to pay for whatever she's getting, and turned to me and said good luck with whatever it is you're fighting right now, and I about started crying. He is - which I told him - the first person in public to ever say something to me during this whole process so far. I get that people don't know what to say, and are uncomfortable - believe me, I get it. I'm super shy and would likely, before this, never say anything to anyone. But I read about all of these people who have people come up to them at the grocery store or wherever and wish them good luck, or say keep fighting or I'll pray for you or anything, just some sort of acknowledgment - and I've not heard one word from anyone. Believe me, I don't go running around town - there's the running again, I don't run anywhere - in a bandana, hoping or waiting for someone to "validate" my fight or anything like that - no one owes me anything and everyone has a struggle going on, some visible, some not so much. But I do have to say, it absolutely made my day, and I will promise to pay it forward someday, knowing how much it means. Thank you kind man out there.

And, the kind mamas who are helping me out are dropping off the first batch of milk today in prep for baby girl's arrival! A big thank you to them as well... it was a good day.

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. :)

Blech...

Chemo heartburn bllloooowwwssss.....that is all.

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.

 

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)

A small bit....

After getting jabbed in one arm and then having my other forearm dug into (who takes blood from the forearm??) this morning - blood tests every Friday are getting really old - I got a bit of good news. I haven't really heard "good news" in front of my name for quite a while, well, other then that the tumors are shrinking. But I received my BRCA results this morning and they are negative! Which sort of confounded the geneticist, to the point that she's even asking the lab (there is one lab in the US that does the genetic tests for BRCA) to see if I need one more specialized test that they are able to do. She was surprised because of my age, and the fact that my mother and grandmother have both had breast cancer, along with a maternal great-aunt... however all of those were post-menopausal, non-agressive and frankly nothing like mine. I had a feeling all along it was not genetic, just crappy crappy luck. What this means is that now I 1) am not passing on a mutation to my unborn daughter - she will obviously be at greater risk because of me but the risk is reduced in comparison to if I was positive 2) I will likely only be having a single mastectomy now and 3) I don't have to have my ovaries removed, at least not anytime soon. So, hopefully this is the beginning of a roll for the "I have good news for you" appointments.

Since I'm in CA I thought I'd post a pic of the Endeavour fly-by for anyone who hasn't seen the million other much better pictures on the news or whatever. This was from my front yard.

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.

Holy shamoley...

Well, looks like little bug may be coming earlier than we thought...eta is now about October 15. She is measuring two weeks ahead of schedule and already weighs 4 pounds so no one is too worried about her size. Which means surgery will be moved up also, etc etc. Oh my. Looks like 6 weeks to go. Holy crap, we've got stuff to do.

My two babies sleeping together, soon to be actually touching!

One more thing...

Soooo to add insult to injury I was diagnosed with gd today. I knew I would be after I failed my first glucose test....I have had no previous bs problems and none with jack's pregnancy, however one fun side effect of chemo and steroids is that it raises blood sugar, so there is really nothing I can do about it. But now in addition to getting my arms pricked for the next seven weeks, now my fingers get poked too. Faboo. Thank god I only have 7 more weeks til delivery because between all this crap and the HEARTBURN FROM THE DEVIL I think I would have to crawl in a hole if I had much further to go. Plus chemo is doing nothing on slowing this kid down or her growth so I am not worried at all about her. One day at a time, I will make it through this. Honestly, it's the pregnancy giving me way more pain and discomfort than the cancer or chemo at this point.               

You've gotta represent...yourself!

The one thing I know about the medical community, when you are in it or caring for someone in in, is that you have to advocate for yourself or the other person if they are not capable. And it can encompass everything, from watching and asking what medications they are giving you and why, to why certain treatments vs. others, to even watching the saline drip and making sure it's right. It's unfortunate because when you are in the hospital or dealing with doctors and nurses, it's not normally when you are feeling your best and everything is going right and your stress is minimal - quite the opposite. But it is still imperative that you do it.

So I go to chemo today and wait for the nurse to try to find one of my poor, disgruntled, hiding veins. She's all, okay, show me your access, so I show her my arms. She's all, ohhhh, no, the Dr came in the other day and said anyone getting adriamyacin has to have a PICC line or a port. Well, I have neither. Too late for a port while I'm sitting there and I have refused a Picc line for a number of reasons. I will tough out the sticks until I deliver and then will get a port. So I heard her talk to one of the other nurses who said something about me "just being against it" (ummm, yep. No PICC line with a 2 year old, plus I have seen and taken care of other people's PICC lines and seen too many infections, they just get dirty, plus I could have clotting issues due to being pregnant - so NO PICC LINE!) insuating I was just being difficult. So she was all flustered. She brought over the charge nurse, who knows my whole story, and she was like, okay, let's look at your arms, I'll take this one, no problem about the Picc line, I totally understand, got a good vein, annnnd done. So, there you go. You really have to learn to assert yourself at all times, for everything. And chemo went completely fine, not even the slightest skin reaction this time, in and out, great.

Changes......

Changes, changes all the time. I'm not a big fan of change, never have been, so I guess that's something else I have to learn to live with in all of this. Our kitties had to move out this weekend. Now we would never get rid of any of our animals under any other circumstance, but one of our cats has a tendency to get a little over-stimulated and would scratch me sometimes, and I absolutely cannot get scratched by poopy cat claws right about now... so a college friend that I haven't seen in over 7 years heard about Chloe and drove out from Arizona to pick her up! Amazing. My mom is taking the other kitty, he needs a kitty friend and was originally hers anyway so he'll be fine. We would never have just taken them to the shelter or anything, we would always have found them a home no matter how long it took, but we are so grateful for this help. Every part of life seems to have to adjust to this crap, and it's unfortunate, but unavoidable.

Cleared for chemo #3 tomorrow... yay! (I asked the Dr...am I the only one who gets excited for chemo? She's like, 'you should be, you're killing bad things!' which is exactly why I get excited) Let's go kill some more evil cells!

For goodness sakes...

So I walk out of the oncologist's about an hour ago and this older woman, probably 70s or so, "whispers" to whomever she was with, while staring at me, "look, she's pregnant, she's pregnant and has cancer!" I had to run down the hall so I wouldn't laugh out loud to call my husband to relay that tidbit. She's lucky I had a good Drs appt and was in a laughing mood. Seriously, people crack me up....fyi, the cancer and pregnancy has not affected my hearing or my sight, so if you think you are invisible to me or I can't hear you, you are mistaken. But you do provide some comic relief.

On a serious note, thank you for all of the continued good thoughts and prayers, they along with the chemo, seem to be working. I don't count my chickens, it is one day at a time, but at least at this moment, things are working.               

Cookies...

I made cookies the other day.... that may not sound like a big thing at all, especially for those of you who know me and how much I love to bake (although it has been 80+ for the last three weeks and the oven never turns on then) but it is. Because when you get a diagnosis like this, you kind of just freeze in place. Everything becomes extremely unimportant for a while. You have to learn again that it's okay to start doing normal things, that the ground is not going to fall out from under you, at least not today. You have to learn that other people's lives go on, and you have to learn to reconcile both not really giving a crap about the "normal" of other people's lives (sorry to be brutally honest) yet not wanting to talk about the cancer all the time and letting it rule your life. I think I can join the circus after this because you very much learn how to walk a tightrope every day.

Test

testing.... this will be up next week, transferred from my existing site at http://www.caringbridge.org/visit/jamiethomas24