Humans in Healthcare: Chapter #7

We had moved to Arizona in July of 2017 and in November I finally got around to making an appointment with a new doctor for my routine care. I went to my appointment to establish care with the new doctor. She was really nice and did a basic exam and said I was good to go unless I had any questions.

I had also recently started doing pilates and told her that I pulled a muscle or something because it had been hurting under my arm for a while and it was now feeling swollen. She looked puzzled, telling me it was a strange place to pull something, and she’d better check.

She checked under my arm, did a breast exam, and found a lump. She asked if I knew about the lump, to which I replied: yes. I had pointed it out to my gynecologist back in May. Despite a family history of breast cancer, he told me I didn’t need to worry, it seemed like fatty tissue, that I was too young to be concerned, and besides, I was getting a mammogram anyway. So, I left it alone.

The new doctor asked if I had completed a 3D mammogram, ultrasound, or biopsy — I said no. She looked puzzled, saying there was no way my old doctor could have been sure without testing.

So she sent me for a 3D mammogram and referred me to a breast surgeon for a consultation and assured me she’d follow up on the mammogram.

I got the mammogram a few days later, still not really thinking much of it since every mammogram I had ever had was fine. But when I went to get the mammogram, they asked me to wait for a bit and then asked if they could do an ultrasound so they could get a better look at things. Being me, I just thought this new imaging center was much fancier than the one I had been going to so this was their routine care.

After the ultrasound, they had me go into a consultation room with the doctor who had looked at all the scans. She said they wanted to do a biopsy to get more information. I was still not really thinking it was anything bad.

In hindsight, I realize they already knew what they were looking at, it was just a matter of what kind of cancer, not if it was cancer.

So I scheduled the biopsy and went home. Things accelerated. We met with the surgeon who didn’t have the results yet, but would have them either right before or right after Christmas.

At this point I still really didn’t think anything was wrong. I was just annoyed by all the appointments, so I said let’s just talk after Christmas so I can enjoy the holiday.

3 days after Christmas, my doctor called and explained that it was cancer. It had spread to my lymph nodes, was triple positive and very aggressive, so we needed to come in the next day to talk about a plan.

I think I heard the words, but I really didn’t accept them. I knew what she said and knew what we needed to do, but in my head it was more of a checklist of things and I didn’t really accept that all this was going to happen to me.

Honestly, it was awful. But what kept me going was my amazing support system and the incredible team of doctors and nurses I had by my side. Thankfully, I had decent health insurance to help alleviate some of the financial stress.

The thing about treatment is that it's such a personal journey, and it can vary so much from person to person. I seemed to be the lucky one who experienced every single side effect, even the really bizarre ones. But some people sail through treatment, there are so many different factors.

Giving advice about treatment is tricky because what worked for me might not work for someone else. So, I try not to be too prescriptive. But here's one piece of wisdom I can share: if you don't trust your doctors enough to resist the temptation of Googling everything, then it might be time to find new doctors. Trust was crucial for me, and I had complete faith in my medical team. They made the tough calls, and I went along with it because I trusted their expertise.

⏸️ EMPATHY CHECK: 

How do we build a foundation of trust between patients and their care teams?

I had a good experience overall, because of my amazing team of doctors and I can say that because I am still here. But overall, I would say that the diagnostic parts of healthcare today are not at all patient centric. Providers can be patient centric, but the system as a whole, is not.

I know that at the end of the day healthcare is a business, but the area where I experienced the least amount of compassion and empathy was in the numerous tests and scans that I had to have throughout the process.

I don’t really blame the technicians, they are doing what they are told to do, are overbooked and they can’t necessarily spend an hour with each patient to hear their story.

It just seems unfortunate that it’s the same process from someone with a broken foot getting an MRI as someone who is waiting to find out if their cancer has spread.

I’ll give an example. Right before chemo started I needed a PET scan to be sure the cancer hadn’t spread.

I am claustrophobic and told the technician so. Despite this, she proceeded to strap my legs to the sliding board I was on! I asked to undo them and she responded no, I just needed to be still so she could get done.

I was already pushing the emergency button before the test even started, but she took her time so I pushed the sliding board towards the opening. Then, she ran in yelling at me that I couldn't touch the machine and the I had to get back in to do the scans or my doctor wouldn’t treat me.

Obviously, I couldn’t do that. So I went home and called the doctor who was outraged. I went back a few days later to a different location, took some medication the doctor gave me and also had a very nice patient technician do my scan.

⏸️ EMPATHY CHECK:

How can we make diagnostic and treatment experiences more humanizing for patients?

Tooktake is basically a sticker that can go on anything that you need to use or take. It has little perforated tabs on the sides so you can easily keep track of your doses and know at a glance if you took or still need to take something. Tooktake labels come in 4 designs: Daily, Hourly, 10-Day and Monthly.

Tooktake came out of my own need to keep track of all the medications, both prescription and OTC that I was being given to manage the side effects of treatment. They were all in different forms, on different schedules for different numbers of days. So each one seemed to need its own system.

I couldn’t find anything that would help us keep track so I started to make little labels with tabs out of sticky notes to help me and my family keep track of things and know if I took something or still needed to take it.

It became something that we really relied on. Especially when I was at my worst, my husband knew exactly what I had been using and could tell the doctors and nurses so they could help with whatever new side effects were happening and help us figure out what my have caused it.

One thing I was pleasantly surprised by was how much I still needed tooktake when my treatment was done as I still had one pill to take every day to help prevent my cancer from returning. As I got back to my busy life with work, family and friends, it became even harder to remember if I took my pill. But with tooktake I always know, and if my husband or daughter happen to see the tab still on the bottle, they can remind me that I haven’t taken it yet.

I would love help spreading the word about tooktake labels!

Right now I am focusing on talking to a younger audience. Most young adults don’t even look for a solution to their adherence issues because they assume that everything out there is for people who are old or really ill, but there are millions of us that take meds for chronic conditions, allergies, ADHD, Thyroid pills, cholesterol, acne, supplements , vitamin D, prenatal vitamins, multivitamins etc… that just want to know “did i take this?”

And, parents love tooktake labels because they work on all those kids meds that seem to mainly come in liquid, drops, lotions and creams.

There are many solutions designed for the elderly or people with complex medication routines, but I want everyone to know that tooktake is designed for the rest of us.

It’s simple, tech free, affordable and kinda fun!

The greatest challenge for me has been that I went to art school not business school, LOL.

But the greatest gift has been that I have a business that genuinely helps people.

There aren’t a lot of companies that can say that their product can help people get and stay well. I like to say that tooktake doesn’t compete with any wellness product or favor prescription over OTC over natural or homeopathic remedies. Tooktake just makes everything that people choose to use to keep themselves feeling their best work better.

My dose of humanity is to suggest that we stop judging people for how they choose to take care of themselves, especially when it comes to medications. It's disheartening to hear how many individuals feel stigmatized and judged for taking medication to manage chronic conditions.

Instead, I hope we can encourage a different approach. Let's take the time to ask why someone is taking a particular medication and how it helps them. Let's truly listen before offering suggestions or sharing internet stories.

We should be supportive of our family, friends, and loved ones, respecting their choices in finding what helps them feel their best.