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?"

Fifteen Embryos

Sometimes in the midst of all the chaos I stop and think about all the things I have experienced in my life before the age of 30, and also all the things that I have not.

I have not...
1. Seen snow
2. Been to Europe
3. Smoked a cigarette
4. Had brain freeze
5. Owned a dog
6. Broken a bone
7. Skinny dipped
8. Gotten a speeding ticket
9. Been married

I have...
1. Walked on a glacier
2. Fallen in love
3. Experienced the great loss of death
4. Completed a half marathon
5. Had breast cancer
6. Witnessed the love and goodness of people
7. Found faith in something
8. Experienced the bizarre science and pain of IVF
9. Fertilized 15 embryos with Brian

Given all of that, breast cancer especially, I no longer stress about "getting older". My upcoming 30th birthday used to make me feel like my experiences were inadequate. Societal expectations made me feel like there were so many things that I "should have" done by now. The reality of it is that I have time. I have bought myself time. Thirty is no longer a birthday to hide from, it is an experience to be had.

The last few weeks have been physically, emotionally, and mentally draining. I have met more doctors than have treated me in the entirety of my life. I have been stuck with needles around 30 times. I have gone under anesthesia twice. I have made several life altering decisions and this journey is not even over yet.

So far, egg retrieval has been the most painful part of all of this. Seriously, the lumpectomy was a piece of cake in comparison. The marathon of injections and bloated ovaries were uncomfortable, but nobody prepared me for the aftermath of removing 19 eggs. Apparently the more eggs you remove, the more pain you will have. The procedure went well. The anesthesiologist did a great job with my IV (no blown veins). I wasn't even groggy after. The trouble came later after I woke up from a nap. Everything hurt from my pelvis to my shoulders. It was like the worst gas you've ever felt covering every square inch of your torso. I couldn't move. Couldn't breathe. Couldn't function. I've never been in that much pain before. It sent waves of nausea through my body. When I lifted a water bottle to drink, spasms would break away through my chest and shoulders.

All I can say is I'm relieved that it's over and the procedure was a success. Fifteen of the 19 eggs fertilized. Now they just need to develop for a few days before Brian and I put those babies on ice. Weirdest experience of my life.

What's weirder is when you walk past the lab to see the culmination of your own personal science experiment. Incubators holding all the eggs. I now understand how salmon feel.

Embryos Aren't Like Kittens

When you've never had a baby, your expectations of what it's like to conceive one are sort of romanticized. You imagine it happening naturally with someone you love at the right time in the perfect way. All of this has been framed by "The K-I-S-S-I-N-G Song" that you sang on the playground as a kid.

Love + Marriage = Baby in the Baby Carriage.

I never would have imagined that my song would go like this...

Love... ... ... ? ... ... ?? ... ... ... ?!?!! + Cancer = Produce Your Stuff. Fertilize It. Freeze Your Embryos.

I guess we've never really been conventional.

Cancer, or any terrifying illness, has the power to reveal people for who they truly are. Cancer removes pleasantries, barriers, costumes, and fallacies. All that remains is the person and their true character. Some people run away and other people reveal that they possess a deep well of heroism, compassion, and love. The latter is true for Brian.

As much as we loved each other before all of this, braving this war together has really cemented what we are. Now we're making frozen babies together. Brian has (romantically) administered my hormone injections each morning and opened my pill bottles for me. I have many eggs developing, which he attributes to his excellent injection skills.

Aside from the bloated ovaries, constant discomfort, and mood swings that come from so many growing eggs, there is one more bothersome facet to this gem of a situation. I can't help but want to keep all of the embryos! Babies are like kittens; so cute and squishy and it's hard to just have one when you have an entire litter at your disposal. Plus all of these are our cute little kittens. Good thing using the embryos isn't easy or cheap.

I've Always Done Well On Tests

Of all the doctors appointments I've had thus far, yesterday's was my favorite. I went to the women's center to see my surgeon for my post-op appointment. I went in on my own first so he could check my incisions. They are healing nicely. Then my family came in so the doctor could go over the test results from the surgery.

I've always been good at tests. In school I managed to get good grades with minimal preparation, and so far I've been pretty good at cancer too. If I had a cancer report card it would tell you that I aced Genetic Mutations, Lymph Nodes, and Clean Margins. I just have one test left, the OncotypeDx. Like lymph nodes and genetics, there isn't anything that can be done to influence the outcome. It'll be what it'll be and I'm hoping I do well on that one too so I can dodge the chemo bullet.

After all the information was given and lots of questions were asked, the best bit of information came out. I am now cancer free. Those words were the antithesis of the nightmare that began on May 18th. I know that there are still things to be done to prevent this from coming back, but atleast that sneaky little intruder is out of my body and being sent away to a lab in California to be chopped up into little pieces and experimented into oblivion.

Good riddance.

Squeamish

While I've learned that I have the potential for great mental strength, I have also learned what my kryptonite is; I am a squeamish mess.

As a young child I would run screaming from the doctors office when the nurse walked in with the needles.

When I had chicken pox in 1st grade one of the little scabs surprised me by turning into a little bubble and I nearly fainted.

When I had my lip stitched up after a soccer collision, the feeling of the string in my mouth sent waves of nausea through my body.

Needless to say, I don't deal well with uncommon physical disturbances to my body, no matter how insignificant.

I had a lumpectomy and sentinel node biopsy on Wednesday morning. The surgeon said everything went well. Best part of all is that the cancerous lump is out of my body. I've been resting at home, not really pushing my body in any way, even though I was told I could resume activity yesterday (non strenuous). I'm not in pain, just uncomfortable. I could probably easily go for a walk, take a normal shower, go for a drive, make some food, etc. But I've gotta tell you... the small bandages covering my incisions feel like a straight jacket. Even though they said I could, I think it's probably best that I don't raise my left arm above about a 50° angle from my body and don't make any sudden movements.

But before I get into more of that, let's go back to Wednesday morning...

It's a good thing that they make you go in for surgery first thing in the morning because you're just too damn tired to really care about anything. I didn't care that I had to go to the women's center to get four injections of radioactive dye into my boob. I didn't care that I had a surprise mammogram. I didn't care that the nurse at the hospital blew out my vein on the first IV attempt. I just didn't care. I was ready for them to knock me out so that I could wake up on the other side of step 1 to this whole ordeal. I remember being wheeled into the OR and listening to some music that I enjoyed. They gave me the oxygen mask and the next thing I knew I was waking up somewhere else.

I opened my eyes to a blurry new room and thought, "I made it. I'm still alive." I actually thanked God for keeping me safe. I've cultivated a new relationship with God in all of this. I've dodged so many bullets that I can't help but feel and see things in a different light.

It took a while to sweep the cobwebs of anesthesia out of my head. Once I got home I went straight to bed and stayed there for about two days while I rested the nausea away.

I had my first post-surgery shower last night and my squeamish nature got the best of me. It was my first time undressing and seeing my reflection in the mirror. I could see the swelling, the bandages, the initials on my boob where the different doctors signed their work. I know it really wasn't that bad, but everything looked foreign to me and I was immediately nauseated. That's not my body. Brian helped me shower quickly, avoiding the bandages and swelling so that I could cover back up and pretend I didn't see it. I'm sure my comfort level will improve soon, but not today.

On top of that, as soon as I got home from surgery it was time to begin fertility treatment injections. Surgery happened to line up perfectly with my menstrual cycle so that egg retrieval can happen before the next cancer treatment begins. Since I can't inject myself, Brian has the lovely job of injecting me near my bellybutton with hormones because I'm just too squeamish.

I look forward to the day when all of this can be behind me, but for now I just need to find the mental armour to deal with what comes next.

A Big Box of Needles

Denial. Anger. Bargaining. Depression. Acceptance.

With my cancer, the stages of grief weren't exactly applicable. For me it went more like this:

Numbness. Terror. Xanax. Enlightenment. One big cry. Relief. Three small cries. "Normalcy". F*ck it. Exhaustion. Catastrophizing. Xanax. "Normalcy"....

Once the terror wore off and I knew I would be ok, my biggest concern became fertility. I've always wanted to have kids. I can't handle the sight of squishy, newborn babies... it literally makes my uterus glow. The threat to my ovaries from potential chemo and the reality that I will need to be on Tamoxifen for 3-5 years before I can be pregnant broke my heart more than any of this other stuff.

There are no guarantees in any of this, but when my eventual in-laws offered to help with fertility preservation, I was over the moon.

This past week I went to two fertility doctors. The first one felt like a baby factory. The waiting room was like a space ship, or Epcot in the 90s. Couples moved through the intake rooms and exam rooms. I almost expected a machine to come down from the ceiling and implant a baby into each woman's body.

The second place was smaller. I didn't feel like I was in a factory, but I did feel like I was in a science spa. The waiting room had scenic views on the televisions and soothing music. When we sat down with the doctor, we were offered hot tea from a Tevana style tea set. I really liked the tea!

That's when the explanation of the process began. All I can say is it's bizarre. The things they can do are straight out of a sci-fi movie, but if it means I have a better chance of having my own kids in the future, I'll do it!

After seeing the doctor, Brian and I sat down with a nurse who explained the steps that must be taken before they can even extract my eggs. Here's what I heard... Shots. Needles. Needles. Shots. Needles. Needles. Shots. Needles. NEEDLES.

I don't like needles, but there were bigger things to consider.

Since then I have been preoccupied with whether or not to freeze eggs or embryos (fertilized eggs). The doctor presents you with the "what ifs" regarding you and your partner. Is your relationship solid? What if something happens to one of you? What if this person is the only one you can have a child with and they are no longer around?

My mind has been spinning.

Today, all of the fertility medications were delivered. I'm no longer thinking about eggs vs. embryos because I just received two large shipping boxes of NEEDLES!

The things we do for love...

Things That Shift

Since this little intruder popped up in my boob and my life turned into a science fiction movie, my perspective has shifted on a number of things.

First of all, my already strong distaste for "breast cancer pink" has been heightened. More than ever, I feel that everyone with breast cancer is tied together by this awful pink ribbon and placed on a stage for society to look at. The purpose of this is to evoke certain emotions of fear and pity, while simultaneously getting people to open their wallets and donate money. Don't get me wrong, money for research is fantastic. Research makes this cancer more survivable than ever. For that, I am grateful. For me personally, I would much prefer to be represented by camouflage than pink ribbons. I want to be represented by something that symbolizes strength of mind and body. Something that demonstrates that I am not a weak little victim wearing a head scarf.

Enough of that rant.

The second thing that surprised me in all of this was my immediate need to make sense of it all. That's where God comes into it. I've always believed in something, what that is, I'm still not really certain, but there is something that I can't see that has a strong influence on how things go. I believe we all have a little bit of that "God energy" in us (maybe that's the soul?). When we pray or wish or whatever we do, that energy goes somewhere. Since this started, I have felt stronger than I ever thought I could be, and I attribute that to the outpouring of love that has been sent my way. Love is powerful.

The other thing that shifted was my need to find the bright side to things. I've always done this to an extent, but when you get blown up on a landmine and things feel bleak and you have nothing to look forward to, you absolutely have to change your thinking. The silver lining:

My family has been completely disjointed and spread out for several years. This is going to bring everyone together and make us closer than ever.

If I have to lose my hair, atleast I can get a beautiful wig with my dream hair. I know my hair is pretty, but it's such a pain to manage.

If I have to be on Tamoxifen for 3-5 years and I have to put off having kids, I'm going to take the opportunity to go on some awesome trips and have some adventures.

I am much stronger than I thought. I don't think I would know that if not for this.

I believe I have a guardian angel that made my tumor hurt (breast cancer doesn't typically hurt) so that I would pay attention and catch it early. I have so much more I want to do with my life for myself and for others.

That's all for now.

Breast MRI = Alien Spa Day

Medical procedures are unpleasant. Fact.

People who love you will try to tell what to expect so you won't be scared or shocked. The Monday after my diagnosis I had to have a breast MRI. Here's what people told me:
"You're going to be face down on a hard uncomfortable table with your breasts in these holes. It's the worst."
"It's going to be loud and uncomfortable."
"It's very claustrophobic. Don't open your eyes."
"It takes 45 minutes and you can't move."
"Take 2 Xanax before you go."

Here's how it really was...

I took 1 Xanax before I went.

We arrived at Diagnostic Centers of America, which is decorated like a luxurious spa with waterfalls, TVs playing HGTV, and cloth robes in pretty colors. I sat down to fill out forms. It was the first time in my life that I wrote "breast cancer" in my medical history. Up to this point I've never had anything to report except my allergy to penicillin.

The Xanax picked the perfect moment to take effect. It descended upon me as a cloud of shimmering mist, settling into the senses, providing a buffer between me and this new world that I should be so afraid of. I began to smile, just a little. It just didn't matter anymore.

I was brought into a small room where I changed into a blue robe and was set up with an IV where they would later inject the contrast. Needles. I hate needles. That was the worst part.

They walked me to the MRI room. The woman opened a huge door that looked like the entrance to a bank vault. That's when I entered the space ship. The room glowed with a pale blue light that washed over the sterile, shiny machine that took residence in the center of the room.

I opened the front of my robe as I was helped onto a table. Not a hard, uncomfortable table, a luxurious massage table. There were pillows around the three holes (face and boobs) and another pillow that was positioned under my legs to ensure optimal comfort levels while I had my massage. I was covered with a plush blanket and given some headphones. I selected 90s music.

Then the ride started. I flew forward, spinning through space (though I was later told the motion was simply up and forward). The music began. "Killing Me Softly"... really? The aliens were having a rock concert and began to play their loud  music, which drowned out my music. All I could hear was the bass, but I actually knew the song, "I Believe in a Thing Called Love". Much better.

The noise stopped and I could hear the song in the headphones again, "The Sweater Song". I was suddenly transported through time, watching my cousins sing the song together and dance around the living room.

The rock concert began again. The aliens really love loud music. Good thing I do too. I allowed myself to relax into the table while my spa treatment continued.  I had a cool arm infusion. Some more music and then it was over. Twenty minutes.

Aliens probably shouldn't run spas.

They wrapped up my arm where the needle was, I got dressed, then Brian and my two moms (mine and his) took me out for lunch. I had a giant chocolate muffin. Giant chocolate muffins are good for the soul.

Friday the 13th

I was driving home from work, singing along to the radio and enjoying the sunshine. I suddenly felt a tenderness under the wire of my bra and immediately groped for the source of the discomfort. A lump. My face flushed with heat at the recognition of the intruder. I got home and stripped off my clothes, panicking as I examined the lump and the rest of my breasts. Like any millennial with a smart phone, I began to Google my symptoms: painful, palpable, oval. I didn't allow myself to catastrophize. It was probably nothing... maybe a fibroadenoma. I reassured myself with the facts, with the likelihood that it was nothing and began to relax.

My boyfriend, Brian was not so relaxed. I was going to the doctor immediately, whether I liked it or not. My tumor is one sneaky little devil. So inconspicuous with it's fibroadenoma disguise. It fooled many people until the day came when it would no longer be able to hide behind ultrasound images.

Friday the 13th was biopsy day. I'm not superstitious (I have a black cat), but I couldn't help but feel that this was a bad omen. The fear of being awake during an invasive procedure was scarier than the biopsy itself. Fifteen minutes and done. The dentist is worse.

I was scheduled to go back to the office and hear the results on the following Wednesday. Brian was with me. I don't remember anything that was said past, "Unfortunately, it's cancer." All I remember is the physical response that happens to the body when you hear bad news. I saw through what felt like a dolly zoom in a movie. My whole body flushed with heat. My ears got hot and the doctor began to sound so far away. My mouth became dry. Then she stopped talking and looked at me. No one said a word for what felt like 5 minutes. "I don't know what to say," I managed to squeak out. "I don't think there's anything to say. You're just too young for this," the doctor replied.

That's when the fog rolled in. After that there was no hunger. No joy. No desire.
Just fear.

Is this going to kill me?

Being 29, I have seen just about every Nicholas Sparks movie that's been made. Nicholas Sparks teaches us that young, good people who get cancer always die. I hate Nicholas Sparks.

Now that I know that my cancer is stage 1, estrogen and progesterone positive, HER2 negative, grade II, and I have a clean MRI in the rest of my breasts, my outlook is no longer bleak.

I AM NOT A SAD CANCER MOVIE.
I am not cancer.
It's my boob, not me.
I will not be defined by this.