cancer is a b*tch

With that prefaced, I showed up to my appointment for surgery to get a port put in without any idea of what I was getting into.

Things I didn’t know:

#1) What a port actually is.  #2) That I would be going under (this could potentially be filed in the “Things I forgot” category.) #3) That they would attach the port (insert dry heave here) to my jugular.

Peter was there with me at pre-op as a nurse explained and showed me exactly what surgery looked like.  Had I known what I do now, I would treated myself to a delightful breakfast as some sort of pre-award for bravery but then again you can’t eat past midnight the night before surgery.  Alas!  Alack!  Blah!

There was a sample port that I could play with that the nurse used to demo. I just kept staring at it thinking “this thing is going to be IN me?” it looked huge!  Then she said I would have a slightly smaller, pediatric version and I was like “I knew I liked you lady!”   But I was also like “exactly how much smaller?” and “will you be able to see it sticking out of skin?” and “will it cause a scar”.  And the answer was “not much smaller” and yes to the rest.  Ugh.  Another casualty in the war on cancer.

“If it’s so awful why have it at all?” you may ask.  Well a port is actually really great for cancer patients because it allows you to get your chemo through the port and not your veins in your arms which will get weaker and weaker through treatments.  During my first chemo treatment, it took them four times of sticking me to get a good vein.  And the pain that I felt during that sword fight wasn’t the normal giving-blood type of pain that I’m using to experiencing.  It was painful, really painful.  So ports are a good thing I just didn’t know what I was getting into.  You fooled me again cancer, you scoundrel you!

Here’s what a port looks like:

And here’s what surgery looks like: They take the port, cut your chest open and put it in a pocket under your skin.  Then they cut you open again in your neck and feed a tube from the port under your skin and attach it to your jugular.  Delicious right?  And you’re awake for most of it.  I was completely under for the start (which was super fun and dreamy) but they time out the drugs so that you’re mostly with it by the end.

“Science is amazing!!!!!” say the musical theatre major who danced her way through good grades in college, quite literally.  Flap, shuffle ball change y’all!  Here’s how it looks when it’s all attached and beautifully animated: 

If my surgeon were a character from Grey’s Anatomy she would be Ellis Grey, Meredith’s mother.  Smart, no nonsense, and has been through a few wars (she’s a two time breast cancer survivor).

True dat Ellis!  

Let’s be real here…the extent of what I know about surgery can only be found in let’s say the first five seasons of Grey’s Anatomy.  Because after Denny and George’s farewell I had to take a break from crazy town. So I lay there staring at the white dropped ceiling waiting to go under (they really need to put some “go for your dreams” rainbow kitty posters up there to jazz things up a bit) I think of Meredith and her McDreamy affair and Addison and then McSteamy and Christina. Then I remember that {Spoiler Alert} they killed Derek off recently and a deep sadness ensues but that’s ok because, by then, I’m out!  And magically…I’m back!

When I come to, there’s a nurse on my left mouthing something to me as she uses her fingers to flash what could be a gang sign but most likely was “ok”?  I murmur back “I’m ok” but in the process freak out the surgeon who stops and asks me “are you ok?” to which I reply “yep, I was jus telling her that I’m ok”.  Things got very three stoogey after that happened more than once so I just stuck with the international, can’t misinterpret, giant one thumb up (but not too excitedly as to jiggle my bod as I need those stitches to be straight if you know what I mean).  

When they sew you up they do loop stitches and tie you off but leave the knot in place so that when you are done with treatment then can undo the stitches, remove that bad Montana and then redo better stitches.  Hopefully you don’t scar too badly, but if you do you can get a sweet tat like this guy did:

When Peter came into the recovery room, he had a tall, toffee nut, soy, no foam latte waiting for me.  Let it be known that this is the same drink that I used to have so often that I once said “if I ever get cancer it’s because of all the soy I’m drinking in my lattes”  (I have said the same thing about Splenda and really hope that I’m wrong). Irony.  Note to self: don’t put things out in the universe that you don’t actually want to have happen to you.  Just in case.  

Who has one thumb and wants to get out of the recovery room?

This girl!  I imagine Wison Phillips singing “Release Me” which immediately has me singing “Hold on” ...because don’t you know things will change, things will go your way if you hold on for one more day? 

Little did I know, the next few days would be tough (this is where I complain).  Sleeping was hard because I normally sleep on my right and any time I moved or got up it would pull my neck…eek.  I also love cracking my neck when it’s stiff so I couldn’t do that because bending it pulled on the tape on my bandage.  Even chewing made me cringe.  Basically I paced the apartment like a Navy Seal in training for three days just trying to keep my cool.  Once the bandages were off I had more flexibility in my neck and felt like “ok I can be frenimes with my port for a few more months and then it will be removed like it was never even there”.  But then I went to see my Oncologist and he had bad news bears.

Things I didn’t know (continued)

#4) The port will stay in me for at least a year.

So the moral of the story is I’ve accepted my port fate. We are less besties and more like cancer colleagues.  But I will say that when I go in for chemo, it’s pretty easy breezy and I barely feel a prick!  Speaking of pricks…here’s how they prick me now for chemo:

Now that she’s healed up...

Oh hey look!  It’s a port party!

I was planning on sticking with Dr. Q until my plastic surgeon consultation. My main squeeze plastics-style is Dr. Ashijan whose name I continually slaughter whenever I’m brave enough to attempt to say it out loud.  He’s a Beverly Hills-type of plastic surgeon but his office is in Glendale.  His office says “you’re paying extra for a boob job with us because we’re classy.”  And they are classy.

He was the first one to say “I think chemo first is the way to go.”

And: “You want to be able to watch the tumor shrink to know you have the right medication and if you do surgery first there is no indicator” (made perfect sense to me)

And: “I think you need to see surgeon who specializes in breasts”

AND… “I know a great guy”.  I respond with “Is he single?  Because I have some amazing girlfriends.”  To be fair to Dr. Q would have been great but Dr. Ashcan had to refer me to someone else since neither of the surgeons I consulted with work in the same hospital as him (see previous post of anger hyperlink) but who knew I would get such a gem of a referral: Dr. Senofsky.  I owe a lot of Dr. A.  In addition to letting me feel up a whole bunch of implants...

...he gave me a new perspective: one that involved options.  Up until that moment I really didn’t think I had a choice.  And although he could have made money on me right away by sticking with the surgery first plan, he clearly was looking out for me.  So his classy office matches his classy demeanor.

He gets me in with Dr. Senofsky, a surgical oncologist (that’s right surgeon AND oncologist…boom!) who specializes in breast cancer (triple boom!).  He’s like the triple threat of breast cancer.

(not sure what he’s doing here but I can’t get No Scrubs out of my head. #TLCforever)

Because I have already had my max two opinions through insurance, I fork over the good old credit card and pay $250 just to consult with him.  But something kind of miraculous happened the day before.  My mom was getting a mammogram back in Michigan (maybe because it was time or possibly because I have terrified the entire fleet of women in family) and while she was there she asked the nurse’s advice.   She used the phrase (and has instructed me to use it ever since) “if your daughter had breast cancer what would be the #1 piece of advice you would give her?”.  The woman came back and said “see a surgeon who specializes in breast cancer”.  Now $250 is a lot when you’re not really working, but that nurse’s advice was a sign and my mom wanted me to go so she covered the cost.  #bestmoneymymomeverspent…literally.  

Dr. S is very matter of fact.  He’s smart and no nonsense, most likely because he’s good and definitely because he’s busy, VERY busy.  And I liked him.  His decisiveness made me feel like I was in good hands.  Peter and I sat in his office while he looked at my charts.  He took his time while I rocked this super sa-weet pink vest.

Senofsky asked me why we decided to do surgery first instead of chemo first.  To me, I just knew we wanted to remove the cancer as soon as possible, do infertility treatment to save my eggs and then start chemo.  But really the “surgery first” was what I was instructed to do by my previous doctors.   Chemo was the scariest part of the process to me anyway so why not delay that hair loss a bit?  But then Dr. S, in a very confused and frustrated voice, says the one thing you never want a doctor to say: “did your other doctors read your MRI?”  I wish I had a really clever comeback but all I had in the moment was: “I thought so?”  

So supposedly when suspicious areas pop up on an MRI you should actually biopsy them before you starting calling it Mulitcentric cancer.  Which makes sense because it can only be cancer if it’s proven that it’s cancer and the only true way to do that is a biopsy of the tissue.  Ah the scientific method, how I’ve missed you!  To be fair the MRI does say at the bottom: “we recommend a ultrasound and biopsy”.

And I had read that and didn’t really ask either doctors about it. #trustnoone So…partially “my bad” but mainly “their bad”.  And not to call Dr. Q out, but I asked all of the doctors about Dr. Q’s theory about Multicentric cancer and the likelyhood of needing a double mastectomy because it’s more likely to return and no one seemed to agree with him.

So Dr. Senofsky uses the term “Cavalier” when describing the first two doc’s recommendations and it’s fair.  I mean, they were so quick to want to cut without more testing.  And so starts Dr. S on a storm of phone calls.  See Dr. S is all up with the UCLA folks.  He teaches there, does studies there, he’s all up to date with the latest research.  (I’m actually surprised he takes my insurance and I feel super fancy to be with him).  I find out that it was the UCLA research program that has done the most ground breaking research for my her2+ tumor.  They discovered Her2 and created the drug Herceptin which all her2+ patients now take with chemo.  So clearly I’m in the right place.

Dr. S leaves us for a few minutes and calls up one of his oncologist buddies who happens to be on the the board of oncology at UCLA (you know, no big deal).  Dr. S tells us that whatever this guy says, we do, because it’s the best advice you can get (free advice with purchase!)  He says:  Absolutely do chemo first.  And, here’s the curve ball: do infertility treatment right away.  Like tomorrow.  My ovaries cringed.

Originally I was told that if I did infertility treatment first, I would be too much at risk for the cancer spreading.  Since my tumor is estrogen and progesterone positive, it’s fueled by those hormones.  And during infertility treatment, they literally shoot you up with hormones and that would potentially cause my tumor to grow or spread (and I DO NOT want cancer in my lymph nodes).  However, Dr. S said that the risk wouldn't be that high because it would be over a short period of time and that there are drugs to keep my hormones from getting too high. So score two more!  I’ll do a whole update on infertility soon because I documented everything and it was epic and insightful and scary and we were super successful (but let’s stick to chemo for now.)

Most importantly, his colleague said that all the latest research involving my type of tumor says that if I do chemo first, I will have a longer remission rate and overall length of life.  Peter asked “why?” because, well, that’s what you would ask.  And he responded with “we just don’t know why but we know that’s the case”.  

So yeah I’m going to be doing chemo first.  Kind of a no brainer.

Before actually starting chemo I tried everything I could to get into a different chemo facility.  There is a super duper fancy cancer center conveniently located directly across the courtyard from my doctor’s office.  Oh and did I mention it’s the Disney Cancer Center?  Yep, the same Disney you are thinking of.  Not Walt but Roy, his brother, and that’s close enough.  You can imagine the fancy.  You can choose images on the ceilings when you’re getting radiation.  You can walk in a terrace garden.  You can overlook the courtyard with floor to ceiling windows.  The chairs look huge and I bet they are the massaging kind (maybe not but a girl can dream!).  I thought the Disney Cancer Center came into my life for a reason and I tried to pull EVERY angle to get in there.  I tried to change my doctors, my medical group and I would have tried to change my identity to be in there.  It was the nicest place you can do the thing that I dreaded the most.  

My first oncologist at Lakeside/Regal wouldn’t let me even see the room.  And I thought…well that’s weird.  And it raised a red flag because what are you hiding behind the curtain, great and powerful Oz?  And then I read a sign on the wall in the exam room that said you can’t have any guests in there and I freaked out.  Literally.  Freaked.  Out.  And I was ok with getting my boobs chopped off and feeling better about losing my hair but the idea of sitting alone…like I said, I freaked.  

I made every effort to get into Disney (like every effort).

And then when all options lead to dead ends, I started looking for other infusion rooms.  I called my insurance company and asked for options.  They said ask the medical group.  I called the medical group and they said ask the insurance company.  I started calling every oncologist in my medical group and asked where they sent their patients for chemo but they all led back to my medical group and back to the room where I didn’t want to go.  Ok…so now I need to change medical groups but I’m doing infertility stuff so maybe I can pay out of pocket to see a different oncologist in a different medical group that accepts my insurance and then switch right after infertility?  I sound like a crazy person.  So I started to call every medical group that I could change to but really I would have to call each doctor office within that medical group and see where they send their patients.  So I call a hospital I like and find out they have an infusion center on site that allows visitors and I ask the hospital: HOW CAN I DO CHEMO THERE?  They can only give me a list of their doctors but can’t truly confirm that I would be sent there.  This is my life for a solid week, 9am-5pm.  And even when I find a helpful person, they don’t really know how to help.  And I’m fighting infertility coverage at the same time and I’m hormonal, literally.  I was a wreck.  

Now Dr. Senofsky had referred me to doctor, Dr. Naik, an oncologist who he liked.  He didn't work for UCLA and probably wasn't his number one choice but he said he was good.  When I called to set up an appointment and was given his address, I realized that he shared an office with my first surgeon and current oncologist.  So I freak again and ask if I would be doing chemo in the same room without visitors and they confirm.  Yowzers.  I cancel the appointment.  As you can probably tell I was running out of time.  And I was exhausted.  I’m not a quitter but I just needed to spend what was left of my healthy time prepping for chemo.  

Then there was a glimmer of light: I get a call back from a woman name Jamie from the office who’s infusion room I was dreading and she said “I think there has been some confusion”  She said that I could, in fact, tour the infusion room and that, if I wanted a guest, they would have to leave if a patient needed the chair.  But that if I let them know I was bringing someone, they could try to make sure a chair would be available.  So I grab Peter and say “let’s go for a tour.” 

The room is super small and narrow with five chairs on one side of the room facing each other and two desks for the nurses on the other side.  This is when I met what would become my favorite nurse, Amber.  She was sweet and gave me her business card and seemed to understand that the conditions weren’t ideal.  She seemed human and kind and was young and the type of nurse I wanted.  So I felt a little better.  And to be honest, I just needed a game plan so I could rest easy at night.

Then she mentions that there is always an oncologist on duty and that today, for example, Dr. Naik is in.  Hmmmmm, I thought.  Was it fate that Dr. Naik just happened to be there?  The referral to see him was still good from Dr. S, so Peter and I walk out of the office and contemplated whether we try to see him or not.  We figure, why not and we go back up the elevator and the receptionist says he’ll see us.

Dr. Naik is very soft spoken and kind and smart and it turns out he just had a patient with my exact tumor markers.  Oh and he’s knows about all of the latest research and talks about the different conferences he’s been to and how he’s chosen the course of treatment for his patients.  He tells me about the newest drug, Perjetta, which has only been available for the past year.  He tells me that, in combination with Herceptin, 20%-30% of patients have their cancer completely eradicated.  Poof and it’s gone.  (Well let’s be real chemo is not just a “poof”) But still, that’s craaaazzzzzzyyyyyy.  He’s also confident and from Chicago so I give him a MidWest fist bump (not really but I wanted to).  Let me tell you…I walked out of that office with a smile on my face and ready to put a drink in my hand.  The team has finally been assembled!