Another Oncology Appointment…and What’s Up With That Smell?

My oncologist appointment last week marked five years since completing my final chemo infusion (and for those of you keeping track, since I had that nasty chemo nail infection).

Lately, my oncological appointments run like this: my onc asks how things are going, I air all my grievances and we spend the rest of the visit agreeing that there’s no way to determine whether what I’m experiencing is chemo-related, menopause-related, or something that I was dealing with before but hadn’t paid attention to back before cancer.

Because there’s nothing like cancer to make you acutely aware of every twinge and creak in your body.

But that’s about it. We are running out of things to talk about. In this context that’s a good thing.

I used to lament “what could have been” had I not gotten cancer, not experienced chemo, not been pushed into menopause chemically and artificially had my estrogen levels squashed. But now, I know better. What happened, happened. And “what could have been” is pointless to ponder because it simply isn’t reality.

It took me a while to get to that place and I’m finally okay with it .

But there was something else different about this oncology visit…

I walked into the cancer center for my appointment and was hit with “the smell”. There is a distinct scent in the building, possibly the cleaning solutions used to disinfect the place or maybe a fragrance that is purposefully pumped in. I had mentioned it to my clinical counselor several years ago and she admitted that a number of people have said the same thing. The smell is familiar, given that after multiple appointments and infusions and radiation sessions, I’ve experienced it a lot and have made many associations with it.

But for some reason, this time it hit me hard and a wave of sensations washed over me. Not sure why my reaction was so strong, but I’d like to think that between my last onc appointment and this one, I’ve made the most progress in distancing myself from the frustrations of getting cancer and have actually moved on with my life.

However, that rush of emotions served as a reminder of everything that I’ve been through over these past five years. I thought that chemo was going to be the hard part. Turns out, it was the most predictable part: six trying infusions, but they came with an end date. The rest of treatment brought uncertainty and unexpected difficulties. I thought I was done after radiation…but the pills continued.

Looking back at this, while I’m technically not “out of the woods” and may never be, these last six months have felt different. Yes, I still have another onc appointment half a year from now, but I’m finally turning my face forward to the future instead of constantly looking back at the past, worried that those frights will catch me again.

Five Years Down and Moving Along

I had another oncologist appointment last week. This one was a milestone, since it officially marks five years since my breast cancer diagnosis.

Five years ago, I was told that with triple-positive breast cancer I had an 85% chance of survival…but there in the fine print was added “five-year survival”.

Delays in routine care due to the pandemic have resulted in more late-stage diagnoses.

With advances in treatment for HER2-receptor-positive tumors (HER2 being the third marker in “triple-positive”), that percentage has improving. But it’s still interesting to note that there’s a finite end to what reliable survival info your doctor can give you, since it’s hard to run longitudinal studies with a large group of participants.

In any case, my oncologist was happy to see me alive and kicking. With the pandemic, women voluntarily and/or involuntarily delayed preventative care, and as a result, there has been an increase in the percentage of women presenting with advanced-stage breast cancer (from UC San Diego Health). Given how far treatment itself has come, this is a distressing statistic because it means that we have effective treatments but patients are not getting them soon enough. So perhaps, for him, I was a five-year treatment success in the midst of all of this.

My oncologist’s concern now is less that my tumor will recur and more that whatever conditions were responsible for the first tumor might result in a brand new one. He still checked me over carefully. My bloodwork looked good with only a lower white blood cell count (“that may never recover,” he’s said in the past). I have no headaches, my bone pain has significantly decreased and other long term physical side effects from endocrine therapy have just about Sudisappeared.

Five years post-diagnosis I’m turning down another path, one that I would have never explored had it not been for what cancer made me face.

I’m still dealing with things like distractability issues, but that could also be due to menopause and the pandemic situation and maybe just the march of age in general. I’ve noted before that it’s hard to pull apart all the factors to identify a single culprit.

My oncologoist remarked that I looked like I was doing well, that I exuded a positive “aura”, and while I’m sure he didn’t mean that metaphysically, the truth is, I feel like I’m finally moving forward in my life again. This coming weekend I start a three-month yoga teacher training course that will move me down a new path for the future.

I still plan to keep posting weekly during this time. We’ll see how it goes!

After My Last Oncologist Visit, I Fell Off A Cliff

I had an oncologist appointment last Thursday that marked four years of being done with chemo for breast cancer.

During my previous onc visit in February, I had been a mess: depressed, stressed and miserable with joint pain and a feeling that my endocrine therapy was taking away from me more than it was giving me. At that point, he let me stop the aromatase inhibitors.

Now, half a year later, I felt so different. My blood pressure was 118/83, much lower than the 130s and 140s systolic numbers I was hitting after stepping into the exam room on previous visits. I was peaceful and more hopeful.

We discussed all sorts of “survivor” things. The joint pain had mostly resolved itself and was no longer a hindrance to exercise, one of the things most important to me. My libido could have been higher and my short-term memory was often lacking, but he felt that could also be attributable to working and sleeping in the same room for the past year and a half, coupled with menopause.

Finally, my doctor noted that it was time for another chest MRI. Not the most comfortable of scans, but I’d done it once, I could do it again.

I would love a pet, even if it means having to clean fur out of my keyboard.

It was not until around noon of the next day that I suddenly plunged off a cliff. I was talking to my daughter and randomly mentioned my willingness to look after any pets she might have in the future when she’s living on her own, were she to travel for work, because where we lived now we weren’t allowed to have pets…

…and I was slammed by a massive wave of sadness and regret.

My thoughts zoomed back to my first chest MRI, stripped to the waist, lying on my belly, arms stretched over my head, frightened and painfully vulnerable. All my focus was on breast cancer and what other horrible realities the MRI would reveal. All I could think of was surviving my upcoming treatments.

That MRI meant that my life was on hold. There would be no progress in my career for the foreseeable future, and no chance of moving into a bigger place, one that would allow us to get a cat (note: I’m a dog person, but I would have been happy with a cat!). Animals have always been a part of my life, but our apartment rules prohibited them. I yearned for the chance to have a pet again. It seemed such a small thing to ask, but even that wasn’t available to us now.

That brief discussion with my daughter underscored a profound feeling of loss and despair. Cancer had robbed me of a lot of things in my life that others took for granted.

This was my view before I realized I didn’t have to sit there.

And as I sat there in the depths, I forgot that time does not stand still, things are always changing, nothing is permanent…and I have inside me everything I need to climb out.

Curiously enough, I had recently attended a talk on managing anxiety aimed at cancer patients and survivors. The counselor who presented the information was herself a breast cancer survivor and she told us a story of doing a follow-up chest MRI, which she found very stressful. Afterwards, she was asked by one of the cancer nurses what sorts of mental tools she had used while in the MRI tube to calm herself down. At that point, she realized that even though she taught these techniques to her patients on a daily basis, she had completely forgotten to use them herself!

I had been sitting in the darkness for a few minutes when I remembered her story. Most importantly, I remembered that I didn’t have to feel this way, that it served no practical purpose and that I wanted be happier. The only reason I felt like this was because these emotional plunges had been a habit of mine.

So I twisted a rope out of all those grounding techiques that I’ve posted about and pulled myself up.

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True, I still didn’t have a cat. But I was able to take a deep breath and realize that at least I had a future. And that future might contain a cat.

Before You Meet Your Oncologist, Be Aware…

…they don’t pull punches.

This is critical to be aware of when you’ve gotten your cancer diagnosis and are meeting your oncologist for the first time. We all go into that exam room fearful but hoping for good news. We want reassurance that it’s going to be okay.

The problem is, your oncologist can’t tell you that. They can’t say that you’ll get through this fine. Because they’re not going to promise you something they cannot guarantee. What they can give you is statistics. However, that may come in the form of something like, “You have an 85% chance of surviving…”, which sounds great, right, “…for 5 years.”

Is it good news or bad news? Their faces won’t tell.

Now, I don’t know how you feel about this, but honestly, when I heard that I thought, um, is that the best you can give me?

While I adore my oncologist, there was no cute wrinkled nose, no “I’m sure you’re gonna be okay” warm-and-fuzzies. It was all, “this is what’s next.”

I’m convinced that oncologists start their day by practicing how to deliver information without emotion, without giving away whether the news is good or bad. As patients, we literally hang on every word, every hesitation, every wrinkle on our oncologist’s face for an indication of just HOW bad the situation is. Some will reveal more than others, but in my own experience, it was “just the facts, ma’am” for quite a long time.

This could be very frustrating. I learned that I needed to get the “rah-rah” encouragement elsewhere.

On the plus side, however, I knew that if something was bad, my oncologist was going to tell me. He wouldn’t be like that friend who assures you your ugly outfit looks good just so that they don’t hurt your feelings. So if it’s any consolation, you’ll leave the office knowing what’s up, and what the doc doesn’t know yet if they’re still waiting for results. No false promises.

That helps get your head past the diagnosis and moving forward into treatment.

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I remember when, after my final infusion, I developed a horrible nail infection that landed me in the Emergency Room. I was stabilized, pumped full of antibiotics and my wound cleaned out. As I recovered, my ER doc came back to see how I was doing because he knew I’d just finished chemo and was familiar with the cancer experience. He told me that he was about to go notify another ER patient that they had liver cancer and wanted to take a breather and come talk to me before he had to break the news to them. It was obvious that he was moved by his patient’s plight.

So this was a great reminder for me that even though the doctors may seem to be stone-faced, they are by no means stone-hearted.