Gratitude

It's Thanksgiving, and I have a lot to be thankful for. It isn't perfect, but I have a good life. I am often in situations where I just don't understand how I got so lucky. I'm a people person, and good people, people I love, literally give me life. They give me energy, they bring me excitement, and right now, they make me feel loved.

I'm not the most selfless person - I frequently get overwhelmed with life and thoughts (even pre-diagnosis) and as a result, I'm not the most thoughtful person either. I get distracted.

A byproduct of a cancer diagnosis is suddenly having to deal with all the communication surrounding the patient (me). People say that when times get tough, you see who your real friends are - but I'm not experiencing that type of distinction. Right now, my times are tough - really tough, and instead, I'm getting to see how amazing my friends, colleagues, and family are. People are stepping up to the plate.

Not to brag - but my peeps have been out of control supportive. I always considered relationships real - no confusion there. This experience has given me an real opportunity to reflect and appreciate how great the people in my life are. Cards, flowers, gifts, emails, texts, offers to help (which I take seriously - I will call you, don't act all surprised)...none expected - and none have gone without appreciation. 

You all make the world (and my life) a better place.

Thank you all.

Time to Grieve

During my personal time of panic, right after being diagnosed, I had this conversation with the Nurse Navigator at the medical center. I was sitting in her office and asking her questions. Soon, I started to cry (this is how most conversations were going at the time). In those first few days, I wanted reassurance, I wanted someone to tell me that I was going to be okay. I wanted someone to tell me that I could still live my life – the one I was currently living. I wanted someone to tell me that I could still have kids and be happy with my husband. I think what I really wanted in those first few weeks, was for someone to just take it back. It didn’t need to be some dramatic production, but I needed someone to just sort of roll things back. I was willing to pretend like nothing happened, if they were willing to tell me they made a mistake.

FYI, Nurse Navigator was not having any of it. She was not about to let me get all entrenched in denial. That afternoon, I told her I felt sad because I just really wanted to have babies…like, now. I also felt bad because (at the time) we were planning on a double mastectomy, which meant I wouldn’t be able to breastfeed even if I would be able to have children. This is what she said to me, “I know, it’s hard, this is just something you will have to grieve.”

At the time, it felt like a slap in the face. Mostly because I couldn’t conceptualize grieving the thought of something. I couldn’t conceptualize grieving an idea, or my future, or a desire. It didn’t make sense. But it does now. I’m going to be honest though, I can’t do it. I am explicitly unable to put some of these things to rest.

I don’t know if I’m being unrealistic, sometimes I feel like I just don’t know any better, but this is how it is right now.

Treat Me Right

When I was first diagnosed, we went through the process of consulting with doctors and contemplating treatments. Just thinking about the various directions in which we could go was overwhelming. After tumor board, we had resigned ourselves to the fact that I would have to do surgery, chemotherapy, and radiation. I think one of the most difficult aspects of being diagnosed with cancer is not the cancer itself, but understanding the difficult side effects that come with treatment. Surgery was cool, radiation sounded okay, but chemotherapy scared the crap out of me.

During the bargaining phase of our grief, C and I tried to wiggle our way out of chemo...the docs were not amused. Finally though, I decided that it was going to be okay - I was going to endure (obviously, cause you, know...to kill the cancer). I made plans. I called a friend who does hair and asked if she would cut it short, and eventually shave it. I researched wigs - specifically turning my own hair into a wig (it's totally a thing). I made a mental list of friend who offered to sit in sessions with me - sorry if you were just saying it to be nice. :)

When we found that the cancer has metastasized, though, everything seemed to change. It's hard to tell though, if the change happened specifically because of the metastasis.

A few weeks ago, when my bone biopsy had been scheduled, before I had results, we met with an oncologist and went over our Plan A and Plan B. They are markedly different:

Plan A: Stage III: We do chemotherapy first so that the medication can go through the body and kill any renegade cancer cells. Then surgery, then radiation to the chest wall.

Plan B: Stage IV: Endocrine therapy. See how it goes. Take it from there.

If you've seen any of the previous posts, you'll know that we are at Stage IV. The oncologist basically said that we don't want to exhaust our options. We want to try different methods, see what works, and proceed once we know how the tumors respond. Many women prevent breast cancer and/or prevent recurrence by taking tamoxifen. Tamoxifen is a hormone receptor suppressor that blocks the flow of hormones to the tumor. Many breast cancer tumors are very sensitive to estrogen and progesterone. Right now, this little pill keeper is my BFF. I used to have a moment of panic when I didn't put my keys, or my makeup in my purse. Now...on my drive to work each morning, I reach into my purse and make sure this baby is with me.

For the time being, I take tamoxifen everyday, along with my other vitamins. Because the tumor on my spine has already started to wear a little on the bone, I also get a monthly injection of Xgeva, which is typically used to treat osteoporosis. One doctor recommended injections of Lupron as well. Lupron shuts down ovaries and all hormone production. It also puts the patient into menopause for about a month (for reference, women usually experience menopause over a period of two years). I can handle a lot, but I can't handle menopause at 28. Funny how we have our tipping points. I told my oncologist that I'll do Lupron if I don't see decent results in six months. He's down.

Almost one month in, we aren't doing too shabby. I feel grateful each day that I get to hold on to a little bit of "normal" by doing this first. I don't know what the future of my treatment plan will bring, but I'm not inclined to worry about this now. Two weeks ago, I started to feel hot flashes. They don't really bother me much. I find them more amusing than anything - luckily, I'm too brown to look flush.

Achieving the Everyday

One thing that I have been striving towards is stability in my everyday life. I have to say, 7 weeks post diagnosis, I have very few unexpected bouts of crying (compared to before). Success*! A major part (I think) is actually starting treatment. This is the beginning of this part of my life where I take action and do what I can to save my own life. The day to day feels better, knowing that something is being done.

I can't say that I don't love my everyday life - it is pretty sweet. I love my husband, I love my routine, I love Candy Crush...etc. We aren't without stressors, but things we love aren't meant to come easily. Aside from the everyday, I'm trying to be more present so that everyday is good. I am also trying to inject my weeks with little things I love.

A few weeks ago, C and I killed some time running some canyons in San Gabriel Valley. It's where we went on our first official date.

It was fun to go back. It's been over five years now, and we have been married for two. Time races.

*Success is totally relative.

Not as Planned

I met with a breast surgeon at City of Hope on October 16. It was the day after I had the PET scan. I had to drive there myself from work and my husband met me there. I remember City of Hope being a totally different animal - they assign you a number, you meet with a representative who orients you, they give you a patient card...a lot happened. 

When I went into the examination room, I don't know why, but everything started to wear on me. I had handed over all my slides and information, I was waiting, I wanted my husband to be here now. The nurse spoke to me a little severely and I lost it (a little). It was embarrassing, I started to cry. Finally, she left. 

It seemed like an eternity before my husband showed up. 

When the door opened again, it was a man - not the doctor I was expecting. He was a surgeon fellow - and he looked like Zach Galifianakis. He was wearing a bowtie. He examined me and then once again, we waited.

Finally, the surgeon walked in. Immediately, I loved her. She was small and slightly frantic. For some reason I enjoyed this. She talked extremely quickly. Love! We started to talk about options. At City of Hope, their plan wanted chemotherapy first. The idea is to kill all the cancer cells floating about in the body before you have surgery. This sounds good...this sounds like a really great plan. Out of nowhere, there's a knock on the door, a hand pokes through with a stack of papers and the doctor takes them. Once again, I'm blown away by the amazing treatment we are getting. The report from my PET scan has been rushed and we have the results. Totally amazing.

I stare at the doctor and she stares down the page. Everything seems okay, until she gets to the end. At this point, my impatience gets the best of me and I ask if everything is okay. 

No. There is one thing that concerns her. A spot on my spine.

Fast forward to today, these are the things that have happened:

1) I have a bone biopsy: totally cool. Completely knocked out for this - almost no residual pain. The nurses had a little bit of trouble with my i.v. Seriously...that part was torturous. But it's cool - one nurse called my veins squirrelly, which totally made my day.

2) I get the results of the bone biopsy: totally not cool. The breast cancer has spread to my spine. 

3) I have a new job: I'm working closer to the doctors and the hospitals to make treatment more convenient.

4) I've been staged: I have Stage IV cancer. Here's the thing...from III to IV, there is a huge paradigm shift in terms of treatment that I was not aware of. We aren't treating to cure anymore. That is difficult to absorb.

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

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.