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.

One more year.

Well, I've made it to 38.

Let me rephrase... most of me has made it to 38. :) And let me tell you, 37 was a hard fought year. I will never again bemoan a birthday (I may still bemoan a few gray hairs here and there but I'm only human.) I will very happily and gratefully take all of the birthdays that I can get. It's so hard to wrap your head around the fact that none of us are promised any more birthdays at all. It's something that I understand much more sharply now, and that seems to be the only way to learn it, because even after you lose people close to you, even young people, it still doesn't hit you, because you know, those things only happen to other people. It's human nature, this self-protection.

So - I will cherish this birthday and any and all others that I am so blessed with, and I will truly know what a gift they are - they are all the gift I need.

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.

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!