The best possible news

One week ago today, my husband and I sat down with our oncologist and received very good news. My cancer, after only four rounds of chemo (standard protocol is six to eight rounds), was undetectable on the PET scan. I had a “complete response” to treatment. (Take that, cancer!!!)

As someone with stage iv cancer, this was the best possible news. It was as close to a “You’re cured!” moment that I will ever get. Jordan and I both teared up upon hearing the news. Whether it was the chemo, the targeted therapy drugs, the new diet, the HBOT therapy, the supplements, or (most likely) a combination of all these things… “it” worked. It really, really worked.

While this was the best outcome we could have hoped for, it was still a bittersweet moment. I didn’t leap for joy or drop to my knees crying tears of happiness. After all, I still have cancer. The battle was won, but the war isn’t over. And it’s a war I may never win. However, with some encouragement from friends and family, I paused to appreciate this victory. Jordan and I took the day off and enjoyed some much-needed couch surfing then took the boys out to dinner that evening. We celebrated, which was the right thing to do.

But now that the metaphorical balloons have deflated, many of you want to know what’s next. So, here’s a look at the road ahead:

CONTINUE WITH HERCEPTIN AND PERJETA (THE HEAVY HITTERS)

While I may be done with “chemo,” I will still get infusions every three weeks. At these infusions, I will continue to receive the targeted therapy drugs (Herceptin and Perjeta) that I was receiving along with the chemo drug (Taxotere). These drugs were always the heavy hitters compared to the chemo. In fact, there is some discussion within the cancer community of eliminating chemo from the HER2+ breast cancer protocol all together. That’s how effective the other two drugs are.

My infusion appointments will be a lot shorter now—only an hour, compared to the three-hour sessions they were before. The nurses won’t have to strap ice bags to my hands and feet, and I won’t need the post-chemo steroids that threw me into a week-long cocaine-like roller coaster—I’ll miss the ups, but not the downs.

Herceptin and Perjeta are not immunosuppressants, so in just a few short weeks, when the chemo is totally out of my system, I’ll be back to my old self—exhausted and frequently sick, but only because of my children, not the chemo.

Herceptin and Perjeta also come in pill form. One pill contains both drugs and you simply take it every day. According to my doctor, it is just as effective as the infusions. But for whatever reason, insurance companies don’t always cover it, so we’re looking into that now. Taking a pill certainly sounds like the easier route, so let’s hope we can go down that road…  

I will receive these infusions (or take the pill) indefinitely, or until the drugs stop working as well as we’d like, at which point we will switch to another line of treatment. We hope the drugs continue to work for a very long time. The average, however, is about three to five years, hence why my oncologist begrudgingly gave me this dismal life expectancy back in July. But there are outliers that live well beyond the average. And the fact that I had such a tremendous response to treatment early on is a good indicator that I might be one of the outliers. My age is an asset (at least in the oncology department it is… In cancer years, I’m very young. In obstetrics, I’m geriatric). I think my thirst for knowledge is also an asset. And my determination.

HORMONE BLOCKADE THERAPY / BILATERAL OOPHORECTOMY

I don’t know a lot about the connection between hormones and cancer (like I do, say, its connection to glucose), but it sounds like hormones and cancer are a bad mix, especially since my cancer is estrogen positive. (This is also why I’m trying to limit my meat and dairy consumption, since these foods often contain hormones).  

Initially, the plan was to start hormone blockade therapy after chemo ended. This therapy would consist of one injection every four weeks. Getting a shot every four weeks doesn’t sound too terrible. And if that’s all it was, I would do it. But when you factor in all the hospital time I’ve already logged, plus the (possible) infusions every three weeks, PET scans every three months, plus all the other tests, scans and blood tests that will be peppered in along the way… an injection every four weeks is yet another medical interruption to my normal daily life—something I’m desperate to get back to (or at least something akin to “normal”).  

So, if there’s a way to eliminate this medical to-do, I want to do it. And there is—a bilateral oophorectomy (or, in layman’s terms, we lop off my ovaries and throw them in the hazardous waste basket).

If we cut out the source of my estrogen, we don’t have to worry about hormones feeding my cancer, and I can avoid a monthly needle poke.

One side effect of taking out my ovaries (or any hormone blockade therapy) is that it will force me into menopause. But chemo already dramatically suppressed my estrogen and I felt no menopausal side effects. My mother didn’t have any symptoms when she went through menopause, and since I am pretty much a genetic clone of my mother (aside from the breast cancer) it’s possible that I may not experience any symptoms at all. So maybe I’ll catch a break in that department.

Obviously, the other side effect of this procedure is that I won’t be able to have more children.

Jordan and I were on the fence about having another baby before all of this happened. (Peter hadn’t even arrived yet, so I’m not sure why we were already discussing whether to have another!) And If I hadn’t gotten cancer, maybe we would have wanted another baby… to try for a girl.

But the cancer did happen. And bringing another child into this already very unknown world would be unfair to her. And it would mean having to pause hormone blockade therapy, thus weakening my body’s defense against my very aggressive cancer. Pregnancy would also, as it did with Peter, create more blood vessels in my body, thus building more infrastructure for the cancer to spread. So having another baby wouldn’t be the wise decision, medically speaking.

Cancer made our choice to have another baby a lot clearer. Clearer, but not necessarily easier. It’s one thing to decide you don’t want to have children. It’s another to know that you can’t. So I do feel a pang of sadness when I think about removing my ovaries, even though I know it’s the logical thing to do.

But honest to God, Jordan and I are okay with not having any more children. We are blessed with two beautiful boys, and I am so grateful that my cancer was born after they were. I love being a boy mom. I love our little boys with every fiber of my being, and I don’t have that aching feeling that something is missing in our lives. Our family feels whole. It’s the family I was always wanted to have, and until I met Jordan, thought I never would. Our family is perfect.

(Plus, with no daughter in the picture, I’ll never have to braid hair… Bullet dodged)

So ovaries be damned!

HBOT MAINTENANCE

After my forty sessions are complete in mid-December, I will continue HBOT on a more infrequent basis. The way it was explained to me is that doing HBOT is like building muscle—it takes a lot of consistent hard work to build it but less time to maintain it. In other words, if you’re a bodybuilder, you’re not going to get scrawny if you don’t work out for a week. So, after all the sweat and tears (aka nap drool and crosswording) I’ve put in at Gym Hyperbaric, I can finally start to decrease my number of weekly hours.  

I know lying down in a metal tube for an hour and a half doesn’t sound that bad. But again, it’s another to-do. Another reminder of my predicament. Another lump of time I could be writing, or cooking, or being with my kiddos. There’s also something about being trapped in there that makes you feel vulnerable, helpless—especially when you wake up from a nap and someone is peering in at you through a porthole. You feel like a specimen.

INFRARED SAUNA / RED LIGHT THERAPY

This is the next holistic therapy I plan to tack onto my regimen once the HBOT treatments calm down a bit. I haven’t delved into the science yet, but my functional medicine doctor recommended it. And as an added bonus, red light therapy also helps with seasonal depression—something the Minnesota winter is sure to bring.

I guess this is also a long-term commitment (like HBOT) but they do sell portable saunas, which allow you to do the treatments at home. So, that’s an attractive possibility for obvious reasons.  

DIET: TO KETO OR NOT TO KETO?

For the time being, I will continue my gluten-free, semi-low carb, (almost) zero sugar, light on dairy, anti-inflammatory diet. But down the road, perhaps if/when things take a turn for the worst, I may try a Keto diet (under the supervision of a doctor who specializes in ketosis—yes, those exist, and I already have a list of doctors to whom I can reach out).

Studies show that a Keto diet can help kill cancer cells because it forces your body to switch its fuel source from glucose to ketones, thereby putting you into a state of ketosis. If glucose is vital to cancer’s metabolism, then it makes sense to switch to a different kind of gas, one that won’t help the cancer thrive.

Without talking to a specialist, I am unsure if this is a viable option for me (I guess it poses some risks if you have metastatic liver disease). It is also an incredibly strict diet that is very high in fat, moderate in protein, and extremely low in carbohydrates. This would make going out to eat a very difficult and stressful experience, unless I just printed out a keto recipe and handed it to our waiter (if only I were more like Meg Ryan in When Harry Met Sally). Plus, you have to test yourself daily by peeing on a stick to make sure you’re still in a state of ketosis. I can only imagine the anxiety tailspin that would send me into.  

Long story short… it wouldn’t be my first choice for a diet. Now, if someone told me definitively that eating going keto would without a doubt cure me of cancer, I would do it. But no one is telling me that. And at the end of the day, I have to start considering my quality of life, and not just the quantity… but that is a topic for another post.  

I think that about covers it. For now, at least. I’m sure there will be more to add or subtract as time goes on, but that’s what my treatment plan looks like at this moment in time. So, even though I’m not getting chemotherapy anymore and even though getting the good news about my PET scan was indeed just that—good news—there is still a long road ahead.   

I don’t want to be a downer. And I know I need to stay strong and keep fighting. But for such a long time, that PET scan was the finish line. But now that I’ve crossed it, it’s finally dawning on me that there is no finish line. And I just need to come to terms with that once and for all, to accept it and find a new normal within these medical parameters that makes life not just tolerable but enjoyable.

Maybe I can take this as an opportunity to decide how I want to rebuild my life. What do I want to add back in that I’ve let fall to the wayside? What do I want to take out? How can I carve out more time for things that bring me peace and joy? What can I include that will make me a better parent? A better wife? A better daughter and family member? What are some ways that I can give back to my family for their support? To give back to my community?

In other words, how do I want to live the rest of my life? Maybe now I can finally have the time to…

…Daycare just called. Winston is sick with a fever, so I guess I’ll have to figure all this out later. Or never, and I’ll just live my life the way I did before, and the way most of us do… the best I can.