Greetings from Camp Chemo!
This pic is from round 1 (and pay no attention to what is most likely bacon caught it my tooth) but I have to back track a bit because my treatment plan drastically changed overnight. Originally, I was scheduled to do surgery first, then infertility treatment followed by chemo therapy. This plan was set up by my first surgeon, Dr. H and oncologist Dr. S.
Dr. H said I needed a mastectomy on my left side and that he couldn’t save my nipple. So that was the game plan when I went to go see my second opinion doctor, Dr. Q. Dr. Q also agreed to do surgery first but recommended a double mastectomy because my cancer is considered to be Multicentric (multiple tumors exist in LB) and he believed that meant that I have a higher chance of it coming back in RB. But good news for once: He said he could save my nipples (score!) so I liked him. And let’s be honest he had at least had a little bit of a personality which is essential when comedy is your only defense mechanism. He was also the first doctor to tell me about the NCCN Guidelines which basically lets you know the exact course of action you should take at any stage of breast cancer (these guides are set up for most cancer types and the Breast Cancer 1-2 guidelines showed the protocol for my exact tumor markers). But as I would soon find out, these guidelines don’t always include the most recent clinical studies (and there have been a bunch recently on my her2+ tumor). But still, these guidelines gave me more control to know what tests I should be getting and what the standard course of action should be.
More below...
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!
Next up is chemo round 1-3 update (spoiler alert it went crazy well) and I’ll throw in a little chemo port action as well (that didn’t go so well but you know you gotta have a little balance in life). Phew! Thanks for sticking with me on that one!