Oncology Consults

11/16

Questions to ask your Oncologists (and other care providers)

https://www.cancer.net/cancer-types/breast-cancer/questions-ask-health-care-team

This day was for oncology. I had scheduled two consults, one in person, and the other virtual, so I managed to get them both on the same day. I worked to schedule these appointments as soon as I received my pathology results. Depending on insurance, you need referrals from your primary care, so it can take some time. I did find out however, that when your primary care has to tell you that you have cancer, they do whatever they can to help.

I decided to get back on Zoloft (Sertraline). Zoloft is an SSRI- A selective serotonin uptake inhibitor. Serotonin is a neurotransmitter, a chemical messenger that transmits messages between neurons and the brain. It’s also a happy hormone, the feel-good hormone, that helps stabilize mood and I definitely needed me some happy. As an uptake inhibitor, Zoloft works by maintaining/increasing the levels of serotonin in the brain, instead of letting it get reabsorbed by the neurons. This helps prevent panic attacks, anxiety and depression.

Cancer is stressful. I was starting to have a hard time sleeping with my mind racing all night. I was anxious, irritable, and cranky. My blood pressure was also starting to skyrise. I think it’s called white coat syndrome, but it was through the roof anytime I was at the doctor’s. As I was seeing lots of doctors now, I quickly added this to my list of worries too.

I remembered the last time when my life was a total disaster. I completely spiraled out of control, and lashed out at everybody and anybody in my way. Especially at my family, and they deserved so much better. I tried everything to stop. From praying and meditation, to insanely exercising daily, but nothing seemed to help. I finally caved in, realizing I had nothing left to fight this on my own.

That’s when I started counseling and Zoloft. I used to think that if you prayed enough or was maybe strong enough, you could get through anything. No one, except the weak, needs mental help. This belief is held especially high within some Christian groups or Asian cultures. Furthermore, you simply don’t talk about such things. It’s considered gossip or taboo. The problem is that you just simply aren’t strong enough, or don’t believe enough, and must try harder. You are a failure and show weakness if you can’t manage it on your own, quietly suffering alone.

But the Zoloft, it helped me breathe. It helped me stop. I could pause before I saw all red. Before all the freaking and effing and blinding ensued, sometimes I could freeze and try a better way. Sometimes I could use a coping mechanism instead of steamrolling over the entire universe and then remorsefully attempt to pick up all the shattered pieces in vain. Sometimes I would even manage not to explode. These times I could speak calmly and clearly, or had the peace to simply walk away. I wouldn’t have to be racked with guilt, apologizing to everyone profusely for being out of control.

Changing my environment allowed me to manage without my mental helpers for quite some time. My diagnosis quickly brought them back.

When picking your treatment team it’s important that you trust them completely. It literally is your life, your future, entirely in their hands. I am no specialist, so I needed the ones who sincerely have me and my best interests in mind, on my team, and in my boat. For my team, I needed to be able to ask them every single one of my questions, and not feel stupid when I needed time to process each response. I needed to be a name, a person, and not just a number in their care. If you aren’t sure what to do or think at your consults, focus on seeing how knowledgeable the provider is, not just about the specialty, but regarding your case specifically, and how comfortable you feel talking to them about your care.

I drove to town as soon as I dropped my dd off at the bus stop. I am not a morning person, so it was way too early for me. The first appointment was in the valley, about an hour away. The office was modern and clean. The staff was friendly and efficient and I was seen to a room directly. After my vitals were taken (high bp again) I waited a bit for the oncologist to come in. I looked around the room and saw these MaryKay gift sets on a side table. They were wrapped in clear cello bags with little pink ribbons printed all over. I waited a minute, and then I grabbed a bag to take a closer look. They contained a card, lotion, some lip balm, an eye mask, fuzzy socks, and body cream. It took me another minute to process what those little pink ribbons were for. The symbol, it now stood for someone like me. Or maybe I now identified with it? Oh boy, just breathe.

I Party in Pink. I support breast cancer awareness. I even co-instruct a group fitness event at my gym during Pink Week yearly to help raise awareness and funds for research. The event was actually not too long ago. I baked cookies, made scones, donated prizes, and got dressed and partied in all pink, never realizing I was supporting a cause that now supported me.

I’ve known some women who have gone through treatment for breast cancer. I saw what it did to them, how tired they were, how they survived but were not quite the same, and how their families had to cope. I felt bad for them and tried to offer support. I knew enough to know it sucked for them, and that I couldn’t really do much to make it any better. I didn’t know what to say to them so I told them they were amazing. I was impressed by all they had to persevere through just to get through each and every day. Looking at that bag, I realized how my life was about to change.

The oncologist who came in was brusque to say the least. She looked tired, and hurried, and not happy. Personally, I need more happy in my life. She read through my chart and then presented me with a cookie cutter treatment for my plan of care. She started spewing out terms, and a bunch of drug names that I couldn’t even pronounce and told me that since I was HER2+ I would be going through 5 cycles of chemo and that the nurse would explain it all to me later. She then started telling me about side effects and writing me out scripts.

She wrote a script for lidocaine, to be used an hour before each infusion so it wouldn’t hurt as much when they jabbed the needle into my chest port. She added Doxy something, two different anti-nausea meds , over the counter anti-acids, diarrhea, and constipation meds to the list. The effects of chemo sickness hit me precipitously.

This was also the first time I even wondered about the cost of cancer, and I realized how quickly this would add up. The doctor told me I would get infused weekly and would have to come back twice the second week for an antibody treatment if my insurance covered it. She told me my hair would fall out, my skin would crack, my nails would bruise, and my lips would chap. All of a sudden I saw the true value of each item in that pink ribbon gift set.

She asked when my port surgery was scheduled and booked me in the week after for treatment. Since I had just learned about them yesterday, I asked her about the port. The huge questions that came to mind were how and when I could get back to teaching group fitness with a port in my chest muscle. Have people done it before? Would it heal? Would it bounce? What about repetitive motions? You can easily do anywhere from 800-1,000 punches and jabs in each cardio kickboxing class. Can you do that with a port? She glanced up at me and said “How am I supposed to know. I’m not a surgeon.” Oh.

So I asked her an oncology question. Why is it specifically 5 cycles of chemo, no less and no more. She looked irritated, responding with “That is what the clinical trials say, why would we do any different.” I asked her if it was common for women to have cancer in both boobs, and if that was in the trials, and she said no. Um, Okay.

Then I asked her a question that got her visibly annoyed. I asked her about birth control. I was told to get off my hormone based pills as soon as I was diagnosed, so I asked her about hormone free options. She looked at me like I was stupid. “Well of course you can’t have hormones you have cancer, ever heard of condoms?” And I got really embarrassed. I figured there might be IUDs or something else as an option, but didn’t know if the anti cancer drugs would affect them in any way. She then succinctly told me to take it up with my primary care, and I knew I was done with her.

Personality matters, even having a tiny bit of compassion, when it comes to medical care. Or at least expertise. I didn’t see either here. I really wanted to like the clinic as it was much closer a drive to my home, but this provider did not give me any positive vibes to say the least. Instead, I started hamster heading side effects and got a bit dizzy from holding my breath to try to calm my head.

As we left the room to view the infusion suite. I asked her about the care bags and she said they were there for breast cancer patients, so I snagged one on my way out. She walked me down the hall, to a windowed room full of reclining chairs, she dropped off my chart and scurried away, leaving me with a chemo nurse angel.