Tuesday, October 15, 2013

Best Test EVER

I had to "fast" last night to go in for a PET scan this morning. It really wasn't that bad in terms of hunger. The food rules though....ugh....the food rules! No caffeine, no sugar (at all - no fruit), no carbs, no starches, etc. It was out of control. I almost didn't eat because everytime I looked at the "do not eat" list, whatever I was about to eat was on it! Also, there's a countdown list: 24 hours before/12 hours before/8 hours before. How the hell am I supposed to remember this? How did people figure this out before smartphones?

Around lunch time, I almost freaked out because I bought a juice that had beets in it. Luckily, I determined (thanks to Google), that it was okay. PET scans are kind of funny. If you look at a PET scan prep list (here's a good one: http://www.texasoncology.com/uploadedFiles/For_Patients_and_Public/Patient_Resources/Forms/Instructions-for-the-PET.pdf) there are some prep items that are kind of unexpected: don't exercise and keep warm for 24 hours. Weird.

Now that it's all over, here's what I have to say: PET scans are AWESOME. I loved it.

First of all, the PET scan tech reminded me of this guy I know who has the most effective, cheesy sense of humor. It was fabulous! Plus, he was Indian, which totally inspires trust within me. I told him that I don't mind needles, but I can't look at them when they go inside of me. He says, "Me too, that's why I didn't look when I stuck it in." I don't even remember if I laughed, but it was hilarious! So, here's what I learned from the awesome Indian man (and a little from the interwebs):

1) PET scans for someone like me, who is diagnosed with breast cancer, use sugar to determine if there is a tumor in any part of the body being scanned. For me, this is mid-thigh up to my head. Cancer likes sugar, cancer attracts sugar, so the sugar will pool and be concentrated at sites where there are tumors. The radioactive part makes it glow.

2) Once he determines my blood sugar is okay (it's great...FYI) he's going to inject me with some radioactive sugar. This radioactive sugar is legit. It comes in this crazy metal container that is more than an inch thick and is totally out of a sci-fi movie.
3) I have to be warm because shivering will make the PET scan machine (scientific name, in case you were wondering) less accurate.
4) After I have radioactive sugar in my body (seriously, how cool), I must lie in the room with zero stimulation - no reading, no Candy Crush (I asked), no music, NOTHING. Can I sleep? Yes, sweet baby Jesus, I am allowed to sleep.
5) MOST IMPORTANTLY, because I must be warm, he wraps me in warm blankets so that I can sleep. No joke, this guy tells me that I cannot move, I must be in this dark room, and I must be wrapped in warm blankets. There was no better way for me to spend an hour this morning.

After the nap and the scan in the machine, I run around the medical complex gathering my medical records to deliver to City of Hope tomorrow. The PET scan tech tells me that he'll put in a rush for my slides and that I can come back after going to medical records to pick up the CD. I roll into work earlier than expected.

I don't really know how to feel about the City of Hope tomorrow. I don't see how the information can be different, more likely than not...it's going to be a different doctor telling us something we've already heard. It's worth it though, if we meet a doctor that gives us more promising news about fertility and starting a family soon. That's too much to give up.

ETA on 11/17/2013: I edited a statement above where I said that cancer cells ingest sugar. It's not true. They attract sugar and the sugar pools to the tumor locations. There is still some correlation though, between sugar consumption and cancer. Here is a link from MD Anderson: http://www.mdanderson.org/publications/focused-on-health/issues/2012-november/cancersugar.html

Monday, October 14, 2013

Second Opinions

More than one person has asked if C and I are going to get a second opinion. I didn't really see the point - clearly, I have cancer. But after going over treatment options, order of treatment, aggressiveness of treatment, etc....I felt like we should.

Someone said that we need to go to a teaching hospital - they do the research and they do the cutting edge treatment. That made sense to me. When we talked to a volunteer at Mission's Women's Wellness Center, she told us that City of Hope didn't just accept any patient, you had to be a "special case". I didn't think we were a special case, but they said they would take me as a patient. Even better - they finagled me an appointment for this Wednesday!

I have a PET scan tomorrow morning, because I'm paranoid and need assurance that this cancer is nowhere else in my body. The doctor said it probably hasn't, but it's worth the inconvenience to be certain. I don't think we'll have the PET scan results by the time we go to City of Hope. I have to scramble tomorrow to get all my medical records to take over to City of Hope. All these weird things that I didn't know went on in the medical world...we are slowly learning.

Friday, October 11, 2013

Back from SF...

I had a blast! C had to work - not as much fun. I felt bad taking this time off...but after the diagnosis, I felt relieved to have some downtime. Seeing two really good friends helped too. It feels so amazing to have had a little mini-break - and still have a weekend ahead of me!

Wednesday, October 9, 2013

No Go

We are in San Francisco!!! Today we had an appointment with an oncologist (back in OC). He's the oncologist recommended by the Women's Wellness Center and the surgeon we met with. I was on pins and needles all day, he was going to tell us -definitively - what he recommends for treatment. C and I arrived a few minutes early and walked in together. I guess this is to be expected - but I've been the youngest person (patient) everywhere I go. I wonder what people think when they see me (I wonder if they even notice).

After signing in and completing ALL the paperwork, we wait...and we wait...and we wait. About 20 minutes after the appointment is about to start, we find out that the doctor is still with a previous patient and we have to leave to catch our flight to SF. C and I head to the airport and reschedule the appointment for next Wednesday.

Now we are in San Francisco! I'm so excited to eat explore, and see some Bay Area friends!

Monday, October 7, 2013

Calling Off the Goalie

I have a really darling friend who refers to going off birth control as "calling off the goalie". Very clever.

As of last Thursday, I have "called off the goalie".

If you had told me six months ago that in October, I went off birth control, my excitement would have been hard to contain. My husband and I have been waiting for the "right time" to start trying. Lots of talk about my working, our finances, raising children, schools, those hilarious arguments about which of us will successfully be the disciplinarian.

We were perpetually waiting for the right time.

Instead, it's October 2013. I'm 28 years old. I just finished grad school. And I have breast cancer.

I'm off birth control to limit the hormones in my body. Biological children may be off the table forever. Life is not going as planned. 

Friday, October 4, 2013

It's NOT the Same

Yesterday, we met with a surgeon. He was such a nice guy. Very compassionate, very kind. This is what he told us:
- No lumpectomy for me
- All three of the common treatments: surgery, chemo, radiation
- His wife had breast cancer about 10 years ago

I get super anxious and paranoid about cancer spreading - it could be anywhere! He kindly tells me that it's unlikely that there is spread. I don't back down, so he orders a PET scan to make me happy. It works.

Today, we went to the tumor board and he represented us. The tumor board is an awesome thing. All cancer patients at this hospital + medical center go to tumor board. A doctor takes your paperwork and info and presents it to a group of doctors. They are surgeons, radiologists, oncologists, plastic surgeons, etc. The nurse navigator tell me that an uncommon number of doctors have turned up for my tumor board. I am special - clearly, yes.

In the waiting room, we are accompanied by a very sweet volunteer. She tells us her survivor story. I cannot relate.

After the doctors meet, our surgeon representative comes back in and tells us their recommendations. They are essentially the same as his: surgery, then chemo, then radiation, then reconstruction. Chris wants reconstruction in the same surgery as the mastectomy. They also want to do a genetic test to see if I have a gene mutation. Stuff just seems to be spiraling...

Chris and I are still bargaining - can we skip chemo? Can we do less Tamoxifen? How are we going to squeeze babies into this equation??? The doctor says that we should do everything as prescribed. He recommends egg freezing, but they don't want me to do the fertility meds. When we become frustrated, the surgeon tells Chris, "I know it's frustrating - I was in your shoes ten years ago."

I resist the urge to yell, "It's NOT THE SAME. You already had kids, you shared a life together."

I don't really hear a lot after that.

Thursday, October 3, 2013

Scare Tactics

One of the worst things about breast cancer (so far......) is how scary every. single. thing. is.
Food, drinks, work, stress, treatment, and just about anything - scary. I started googling causes of breast cancer, I can't help but think of all the things I did wrong in my life to this date that must have caused this. I drank too much wine, I ate too much meat, there was the time when I decided to be a casual cigarette smoker for a year, I ate too much bacon, I ate Lunchables Pizza a lot.....

Our medical center is amazing, God bless them. My primary care physician called me to check in on me and ask if I needed a referral for a surgeon or an oncologist. Our nurse navigator had already helped me get the earliest appointment possible for a surgeon, but I do need an oncologist. I asked about a woman oncologist I found via Google. Ha! I have an appointment for next Tuesday. Tomorrow, I meet with the surgeon - he will have my MRI results. We will find out if the cancer is anywhere beyond my left breast and lymph node area. Hopefully, we'll find out what stage I'm in. It's not stage I.

People keep telling us to get a second opinion. I don't yet understand the reason. I have cancer - that doesn't seem to need confirmation. I suppose it's for treatment options.

Today, the ultimate scary idea occurred to me: I may never be able to have biological children. If I have to do chemotherapy, my fertility may never return. I can't reconcile not giving my husband children of his own. Will he be able to reconcile this?

Wednesday, October 2, 2013

The First Day of October

This morning my husband and I went to the doctor to results from a breast biopsy I had last Friday. When I felt the lump, I was completely unimpressed. Under 30 years of age and no history of breast cancer - what I am worried about? Worst case scenario - it's a cyst and I have surgery.
When the doctor came into the room with the nurse, I was still stupidly unaffected. Imagine my surprise when I was handed the pathology results, clearly showing that I have cancer.

I ask the doctor how bad it is.

She says it's pretty bad.

It's not that my world stopped - it shattered. Very quickly I find out that the tumor is too large for a lumpectomy. A mastectomy is probably my only option.
I opted to go to work, where I was wildly emotional, though not entirely unproductive. Thanks to a very assertive nurse navigator at the Women's Wellness Center, I get a phone call within an hour asking me if I can come in today for an MRI. I say yes. I am injected with dye and lay face down in the machine for an hour. I go home. The results don't seem too scary, I already know I have cancer.