Switching to Wordpress

Many people have told me that they can't subscribe to my blog or comment. I keep trying to fix these things, but it's not working out real well. As a result, I'm switching to a new blog site. There is a link to subscribe at the bottom of each post. Please let me know if this one is better for following!

https://sarahphsmith.wordpress.com/

My Inner Girly Girl

I feel bad for Dr. K, the oncologist I will meet on Tuesday. It will be her responsibility to clean up the collateral damage left by Thursday's attack. The fallout has left my brain rattled. Fear has planted a seed of doubt and I have forgotten the reasoning that led me to make the decisions I have made thus far. It's scary to doubt myself. It's scary to have to make decisions that can affect my health and well-being for the rest of my life. I am thankful to be surrounded by smart people who continuously reiterate that I am making sound decisions and I have no reason to second guess myself.

Being 29, there is no data to guide my doctors to treatments that will be most effective. There is no data to suggest how my specific cancer will behave in the future. Dr. S seems to be reverting to the methods of old wars, wars where there was no data, so everyone was treated the same. Aggressive, toxic, terrible chemo. All I know is I have no tumors to shrink. I have no runaway cancer cells in my lymph nodes too chase down with bullets and bombs. My cancer has not started to travel through my blood vessels. It is gone.

I will not subject myself to the red devil of chemo due to a lack of information. I will not ravage my body without an excellent reason.

What I do know is that I need to fight this with all my might. I don't need to meet Dr. K to know that I will continue to battle this, even if it's just the unknown that I am battling. Four rounds of less toxic chemo is a battle that I get behind.

I will be doing chemo.

Never in my life did I think that would be a statement I would make.

I'm scared. I'm doubtful. I'm taking allot of Xanax (<3 :-D).

I have found things that calm my mind. I am crocheting. I am folding clothes. I am washing dishes. I am watching shows and movies that I loved as a child and take me back to being 12 years old. I am also shopping.

I know that chemo will make me feel shitty and weird and probably ugly, so I'm getting in touch with my inner girly girl and preparing to feel pretty during a very ugly time.

Non-cancer looking hats. Makeup for the thinning/loss of lashes and brows. Wigs. It's kind of fun... in a morbid way.

I guess that's my inner optimist coming out. There is always a light to be found in our darkest days.

The Strategies of War

Wednesday: "Hi, Miss Smith. Dr. S would like you to come in for a follow up appointment tomorrow at 11:30."

I hung up the phone, notified my people, then proceeded to melt into a pile of tears. Time to discuss the strategies of war.

Enough crying. I wrapped my anxiety in a warm shimmering blanket (Xanax).

It was Brian's day off. The sun was out. I had finally stopped crying. We decided to play "normal". We ran some errands then went on a little joy ride. We always end up driving through our dream neighborhood. Horses. Acreage. Trees. Quiet. My favorite house in the neighborhood has a small pond, around which miniature horses roam. Today they happened to be close to the road. They were reaching their miniature necks to the other side of the fence trying to eat the grass (the grass is always greener on the other side, even to horses). "I want to pet them! Do you think the owners would care?" I asked. Brian pressed the button so my seat belt came off. I got out and pet their little heads and backs. I don't know what it is, but miniature horses are magical. They seemed to give my Xanax a little boost.

Thursday: My entourage and I go to Dr. S' office. Dr. S is conservative, aggressive, and quite stern. She does not coddle or sugar coat. I took a Xanax before we went.

The doctor came in and almost instantly insisted that I take chemotherapy. My oncotype is a 21, intermediate range for distant recurrence. Not awful, but not where we'd like it to be. Plus, there's my age and we have no research about 29 year olds.

Here we are, sitting in the middle of the war zone. The bombs are exploding ("we need to prevent this from coming back because if it comes back anywhere else in the body it's stage 4 and I can't fix that"). The bullets are whizzing past our faces ("I think we need to hit this and hit it hard").

After dodging the BRCA bullet and the sentinel node bullet, a bullet finally hit me in the arm. The chemo bullet. Oh well... I guess I can live with a wound like that.

We all prayed for the oncotype to be low, but everyone prays for that sort of thing. God can't give you everything you want. If that were the case, nobody would have chemo, or even cancer for that matter.

Dr. S likes to take the most aggressive approach. Her recommendation is 18 weeks of highly toxic, strong chemo. The side effects are scary (small chance of heart problems and marrow problems, chance of neuropathy...). The other option is 4 rounds, 3 weeks apart, of slightly less aggressive drugs. Don't get me wrong, chemo is chemo, and less aggressive is still aggressive, but as Brian puts it, we need to make sure we aren't trying to kill a fly with a cannon. I need to decide what course of treatment is right for me.

I guess I never go into those war zones with proper protection because I always leave in a fog. Emotionally and mentally drained. Ears ringing from the blasts of information. Scarred by fear.

I have a second opinion on Tuesday. From what I've heard, this doctor is the warm and fuzzy type. The type that gets down in the trenches with you. Maybe she will be a better fit for me, or atleast help me to better understand the strategies of war.

The Waiting Game

I am fine. I am me without 1 tumor and 2 lymph nodes.

I am cancer free.

I am free... but that freedom is an illusion of sorts.

When I left the hospital that day I was too disoriented to notice the invisible box that was built around me.

I see it now. I see it like you can see a window that has been smudged by dust and dirt and touch.

Breathe in deep and release... fear, doubt, angst.

It floats up and away until it hits the walls of the invisible box. Smudged glass.

I am free, but I can see you there.

The sky is beautifully blue today, but inside or out, the windows remain smudged.

I am me again. I am moving and breathing and sweating it all away. But the high is short-lived because the invisible box remains where it is.

I suspect that there is a door inside of this box.

I haven't found it yet, but I would imagine that it will reveal itself when the time comes to fight.

The war isn't over.

Who will I face when the battle resumes?

Genetics

As a young child, I was told "we're Jewish". My family never went to synagogue. We didn't pray. I wasn't given any information about what "Jewish" meant. My examples consisted of lighting a menorah for Hanukkah (inconsistently), going to my grandparents' for Passover (where we ate some unusual foods), and attending some of my cousins' bar and bat mitzvahs up north (where I sat in boredom listening to them sing in a strange language before the fun party began). I even attended shul once with a neighbor. We walked miles back through time to a place where women and men spent most of the day segregated and everyone around me spoke nothing but Hebrew. Needless to say, "Jewish" was not presented to me in a particularly glamorous way.

On top of that, my family, and also society, enjoyed celebrating Christmas. Along with our menorah, we often put up a beautiful Christmas tree with twinkling lights rising up above piles of beautifully wrapped gifts. We loved going to see the new Christmas movies in the theater, listening to Christmas songs on the radio, and walking around the mall in all it's Christmas glory.

During middle school, I became close with a girl who was "Christian". They always went to church on Sunday morning, so if I wanted to sleep over I'd need to tag along with the family while they attended church. We would dress up like we were attending a wedding and then go to their huge, modern church filled with lively music that was sang in English. The inside was a stadium filled with people. The content never really meant much to me, but the place sure made an impression. Then, when it was over we'd go out for lunch at Pizza Hut. Quite the opposite of my "Jewish" experiences.

My knowledge was limited to what I saw.  Judaism made a very poor impression on me, and as a result I rejected it to the point of repulsion. "Jewish" appeared to me to be an unfriendly old man with a long tangled beard who emitted the scent of age. He sat by himself and grumbled about the changing world. I wanted nothing to do with him.

As I grew into a teenager who knew everything about everything, I would tell my family, "I'm not Jewish!" I identified better with the religious beliefs of one who is agnostic. I rejected and resented being associated with the grumpy old man. My beliefs were completely different from his. On top of that I'd become infuriated by those who would associate me with him by appearance. How can one "look Jewish" when there's no such region as "Jewland".

My grandma always used to say to me in her cute little English accent, "You're Jewish! You'll always be Jewish whether you believe in it or not! If the holocaust happened again they'd take you no matter what you believe." Harsh, but she was right.

After I was diagnosed and all the doctors were trying to figure me out, one question kept coming up... Are you of Ashkenazi Jewish decent?

Cancer does not care what my religious beliefs are. Cancer does not care that I don't want to be friends with the little old man. Cancer doesn't care that I'm spiritual, not religious. Jewish is in my DNA. Grandma was right, though I'm sure she would wish she was wrong on this one.

Thankfully, I do not have the BRCA mutation that is often seen in people of Ashkenazi Jewish decent. What I do have is a family history. The one question I wish I'd asked my genetic oncologist is, "lf I look exactly like my great aunt who had breast cancer, does that mean our genes look alike too?"