Why having two oncologists is a good idea or something like that

In retrospect, the oncologist’s office in Santa Cruz had disaster zone written all over it. First of all, Floris’s friend died of a heart attack while being treated for cancer there last year. Totally different situation but still.

animated.gif

Another early warning signal was that I never liked the “nurse navigators” and the oncologist gushed to me about how great they were. One accused me of ignoring her phone calls.  First of all, I keep my phone on silent and ignore everyone’s phone calls. That started after Monty was born and I was terrified of waking him up but the habit stuck. The other one left messages for me to call back and wouldn’t say the area code. Such an alternatingly cute and annoying Santa Cruz habit. They felt like two old ladies harassing me.

The social worker was cool. Her family was randomly from Binghamton area so we had a connection but she struck me as less than on top of it. Bottom line, they were all harmless. They sucked my time for no reason but they weren’t in charge of dosing me with gnarly drugs. The doctor on the other hand was sketchy. My first intense red flag with dude was him asking me where my husband was and insisting I seriously reconsider not wanting to freeze my eggs during our first appointment. Second red flag was once he found out I was Colombian, he mentioned it every time he saw me. He even made the cocaine joke! That had been a while. Third and final red flag, he forgot that  I hadn’t had one of my chemo infusions (because I had to get an emergency surgery and was in the hospital for five days) while wearing a Hawaiian shirt.

Oh Santa Cruz! Of course I have to live in Santa Cruz when I get crazy cancer. Who wouldn’t want to be treated for a life threatening disease in a random sleepy stoner town where people can barely drive? There are worst places for sure. It has been cool to have very easy access to alternative therapy that makes mainstream cancer treatment a lot more tolerable aka weed. And to have Floris, my weed growing best friend forever with his psychotic work ethic, sweetheart nature and cold capping skills.

IMG_4871.jpg

But wow, I don’t know about beach towns and medicine. I have been lucky to be married to Monty’s dad and have awesome health insurance. Weed world is just an hour away from Palo Alto and Stanford Women’s Cancer Center. The thing is it is close to civilization but also not that close. So, I had an oncologist there from the beginning but the logistics of going up there for my chemo treatments, especially doing cold caps, seemed unnecessary. I mean chemo is chemo right? Wrong.

I figured getting the infusions in Santa Cruz would be more convenient and that was true. But I had a really hard time with my first two infusions. I wasn’t expecting it at all because everyone was like, “the effects will be cumulative and you probably won’t feel that bad until the end.” So when I was knocked out straight off the bat, I totally freaked. I never throw up but for a week afterwards I feel dead.

The second time I screwed myself because I also had a cold and tried to stop taking Ativan all at the same time. Ativan! It helped me sleep but not better than weed and coming off of it made me feel insanely sad. After the second time, I went into the oncologist’s office and complained about how bad I had felt and he immediately offered to slice my dose.

Rather than offer what they call “supportive care” – basically an IV with fluids a few days afterwards, meds for side effects, etc. – the dude cut my dose with very few questions asked. I was fine with it because I hated chemo. It is disgusting and makes me feel dead. I know I already said that but really, I don’t feel sick, I feel dead. Plus there’s so much anti-chemo stuff out there … it can be easy to doubt the decision. Especially when it makes you feel dead.

Anyway, he forgot how many rounds I had had and I immediately got freaked out by his decision to cut my dose. The word I have being using is sloppy. So sloppy. Now I feel like, ok lucky for me that this guy forgot how many rounds of chemo I did! He freaked me out so much with his super scary slopfest that I made an appointment to see my Stanford oncologist immediately.

To be honest, I went into Stanford wanting to totally bail on chemo. I was so done and so over trusting anyone to do anything to me. But in the end I walked out agreeing to finish the last two rounds of chemo at the original full dose. That is the power of a caring, charming, professional doctor! Well, that is giving the doctor a lot of credit. It was Floris too. I kept telling Flo, “Don’t let him convince me back into it!” and Flo would say, “OK,” but he had this look on his face.

If you ever know someone doing chemo who is trying to get out of it early, I learned that the best way to keep them motivated is to use the words “we” and “I” rather than “you.” Flo completely supported me if I decided to stop doing chemo, or he at least pretended like he did. He never put any pressure on me. But he said things like, “It isn’t a big deal having to go up to Stanford. Even if they told me we had to go to Oregon to do this I would go.” He framed it as something we could definitely do together. He has spent the infusion day with me every time, switching my cold cap every 25 minutes for up to ten hours. It is one of those things that you have to do alone but you can’t do alone.

5ED46393-B7D0-4B04-BA3D-2332AF42E9F2

So tomorrow, I’m getting my first TCHP infusion at Stanford. It is going to be a wild day. Flo is going to go buy the fifty pounds of dry ice for my cold cap cooler. Monty doesn’t have preschool because of spring break (of course) so we are going to drop him off with his dad at work on the way. We will also definitely be stopping at Indo Cafe in Saratoga for Flo’s Dutch comfort food. Monty gets to have Indonesian and lunch at the Infinite Loop which should be fun.

Then, they will draw my blood through my port around 1:30, run tests and hook me up for six hours starting around 3. This is the latest in the day I’ve ever done a treatment. We might be there until 9 pm and then I have to wear the cold caps for four hours afterwards! So intense but I figure six days of ice torture to avoid six months of baldness is ok with me.

I’ve probably lost 25% of my hair which is comparable to the whole head of most people. I have to vacuum constantly and between Kiki and me it is a LOT of hair. I’m almost totally bald all around my ears where the cold cap doesn’t touch. Weirdly, Flo has the same hairstyle. Like from before I knew him. I use Batisse brown tint dry shampoo on my scalp and pretend no one can tell.

I don’t check the mail very often because I live on the sort of road where it takes me ten minutes to walk to my mailbox. But wow the amount of amazing mail I have received in the past six months has far exceeded any other mail experience I’ve ever had. And my friend MJ sent me an extremely luxurious package that I received tonight with this quote on the front. I felt like crying.

image

OK first of all, did you know how obsessed I was with Anne of Green Gables as a kid!? My grandma taped them all off of TV onto VHS for me. And yes ❤

I’m not a person who feels comfortable in friend groups. I feel very awkward about (not) fitting in. It is like I don’t want to fit in on one level but I do and I can’t and honestly I’ve felt really alone for most of my life. It has been so healing for me to realize that even though I feel like I haven’t ever been part of a tribe, I totally am! A tribe of the most caring, sensitive, creative and hilarious people in the whole world. It is a web of very special one to one connections and it has really sustained me.

 

 

 

 

 

 

 

2 Comments

  1. “Who wouldn’t want to be treated for a life threatening disease in a random sleepy stoner town where people can barely drive?” I know exactly what you mean about the sleepy stoner town thing and I am sooooo glad you have that doctor in Stamford & Flo!!!!! Stay away from those sloppy stoner docs!!!! ❤ What a nightmare. I hated reading that the doctor made jokes about you being Colombian, gross!

    I was so surprised to read you've lost about 25% of your hair because it looks SO good in pictures.. and it is probably still thicker than my hair (or at least looks like it is)! But I know how it feels to be vacuuming up a ton of your own hair, even though the circumstances were diff that's freaked me out before too.

    Anne of Green Gables was my jam in the early-mid 90s! ❤ I'm not surprised to hear you & MJ are fans too.

    Like

    1. Ahhh mochimochi I love you! Thank you for always supporting me and having my back. Your care packages have kept me going. I need to do a full post on how the moon journal has guided me through the darkness many times.
      Yeah the hair thing has been hard – it definitely makes me feel crazy and I am in awe of people who deal with losing all of it or have had to deal with related issues chronically. It is no joke terrifying. Do you want to get haloes with me afterwards?

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s