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. :)