When the answer is not clear

I have what may be competing goals:

• Run one (just one) marathon successfully
• Break no more bones

And I’m not sure how to decide. Normally I’d run off and ask my medical care team only here’s something I’ve noticed. I’m not sure if this is age or gender bias or a lack of common ground (because 99% of my medical care team clearly aren’t as into fitness as I am), but what I’ve heard since fracturing my pelvis in 2018, then struggling with side effects from radiation that affected my fitness and then breaking my foot goes something like this:

• Why don’t you just take a long walk?
• You just run to stay fit, right? So find another workout.
• How about some yoga?

To which the answers are:

• A long walk is beyond boring. Seriously boring. I would rather put that energy into mastering riding my bike.
• I run to compete, not just to stay fit. So screw that noise.
• I already do yoga. And Crossfit. And biking. 

I do have one doctor who’s as into fitness as I am: my endocrinologist. He's an avid mountain biker, totally loves it. And that he's my endocrinologist is also good because he’s the one who keeps an eye on my bone health. So I’ve thought about emailing him through the patient portal and asking his take on this. 

Because I really, really would like to run just one marathon.

Not today, cancer

Today is the second anniversary of my breast cancer diagnosis, which is also the second cancer I've been diagnosed with. I remember dates like these, not to live in a mud puddle or focus on bad things but as a way to honor the trauma I've come through, and just as importantly to normalize having things like this happen.

There's a real tendency not to talk about what it's like to get cancer, or break a bone, or live through a flood, or survive childhood sexual abuse, or menopause or (fill in the blank). I find it comforting when I hear from someone else who's walked the path I'm on and so I do the same for others.

Breast cancer was different from the first cancer diagnosis, and not just because it involved more treatment. There was also the whole OMG BREAST CANCER response from so many people, and the huge disparity in the amount of support available compared to melanoma (which was . . . basically nothing).

Breast cancer also brought more trauma associated with my childhood abuse, which OK that makes a weird sort of sense since some nasty things were done to my breast. Going back to therapy, doing the entire Cognitive Process Therapy was hard so if you are there now, please know it's not your imagination. That stuff is hard.

And the lingering effects of radiation on my running, and the way my bones are just shit now, that's been hard too. After doing all the so-called right things in terms of food and weight bearing exercise, to have my bones just break was a real blow. So if you're there too, you're not alone. 

Today is a run day, and as I've done the last couple of weeks, I did not look at my running watch to see what my heart was doing or what my pace was. I just ran by how I felt. Frankly I didn't think today's run would be all that great since a cat woke me up at 2:30 this morning by massively throwing up on the bed. So I had to get up and deal with that and then try to get a bit more sleep.

But this run felt good and I'm getting more hopeful that my best running days aren't in the past. And that's especially meaningful today, on this second anniversary of my second cancer diagnosis.

Let me explain. No, there is too much. Let me sum up.

In looking back over my posts, I neglected to mention a couple of things about my bones.

First, I had all those tests run last July and as my endocrinologist thought, everything is great. So that means I don’t have an underlying reason for the bone issue. He recommended Prolia which is given once every six months by injection. I had the first injection in September with no issues.

In March, right as everything was getting locked down from COVID, I had the second injection. And the next day I had an allergic reaction around the injection site. It looked a lot like hives. Kent pushed me to get it checked out, although I didn't want to. So I compromised by calling the online nurse through my insurance company. Based on what I shared with that nurse, he recommended I get seen at Urgent Care so I did and sure enough. It was an allergic reaction.

Here’s the thing. I did a little research online and it turns out the housing mechanism Prolia comes in contains natural rubber which is closely related to latex  (see page 4, section 2.3 in this PDF). And I have a latex allergy. Apparently that was enough for me to have that reaction. So Prolia is off the table.

Today he and I talked through my options and there aren’t a lot. My number one goal is to stop breaking bones while running. So the treatment options are a drug that’s injected every day or one that’s given by infusion once a year. After talking through the pros and cons, I’ll be trying one of the daily injections.

He gave me a sample of Tymlos and recommended a trial run to make sure I don’t have an allergic reaction. Assuming I don’t, I’ll get started with the daily injections in September.

What cracked me up is this case he also gave me. It's actually for the other daily injection drug, Forteo (he didn't have any samples of that one). It’s made by Vera Bradley. I don’t know why that tickles me so much, after all Delta’s first-class amenities bag on international flights is by Tumi so it’s the same sort of thing. It just seems different for drugs.

Five needles per bag,
and there are six bags.

Designer baybee!

My bones

Quick back story—last May (2018), I fractured my pelvis from running. While I did run a lot of races that spring, far more than normal, I’d ramped up my running distances in a gradual, sane way. It wasn’t like I went from 9 miles a week to 30 miles a week from one week to the next, I did a good job building my distances. So that fracture was a complete surprise.

And because I’ve done strength training all my life (thank you, US Army, for the habits you instilled in me when I was young), I sure didn’t think I would have any issues with my bones. But I did, my DEXA scan wasn’t great and my PCP diagnosed me with osteopenia. He said it was mild, no need for any drug treatments and that I should continue with the running, strength training and take a calcium supplement. Being a (mostly) compliant patient, I added the calcium supplement to my diet and once I healed up from the fracture, began ramping up my mileage and got back into the strength training.

Flash forward to this past May when I saw my medical oncologist for a follow up visit post-surgery and to discuss the hormone blockers he wants me to take for the next five to 10 years. He reviewed all of my records again, and finally said that he thought I should see an endocrinologist about the osteopenia. Because of the osteopenia, he won’t prescribe an aromatase inhibitor for me even though it would be the normal course of treatment for a woman of my age with the kind of cancer I have. All of the AIs cause bone loss, so that’s right out.

Long story not so long I saw the endocrinologist this past Monday. I really like him—he both listened and heard me and took the time to fully explore my medical history. Here’s a great example: he asked if I’d been on steroids for lengthy amounts of time (no, although I’ve been on them off and on for lung issues), and asked about other diseases that can cause bone loss (celiac disease, and rheumatoid arthritis to name two). Then he said, “what about anorexia?”

OK now that’s the first time any physician has asked about eating disorders that way. Usually health care providers say something like “do you have an eating disorder” and I don’t usually respond honestly (unless it’s active). And I don’t know if there was something in my chart that led him to go with anorexia instead of bulimia, but combined with that question and the open, easy way he was talking with me—zero judgment, truly looking for information—I was honest. Yes, I said, I have had episodes in the past, seems to happen about once a decade, I’m super stressed and I just can’t eat. But then things resolve or ease up and I’m able to eat again. And there was no judgment. He was piecing together my history, all of it, so he could figure out the best path to take with this bone issue.

I almost never disclose that part of my medical history, or the sexual abuse from my bio father, or the suicide attempts or psych treatment to my medical team. Part of that is I’m deeply, deeply private, and most of it is I see the conclusions they jump to, and I catch a whiff of judgment about all of it (no, it’s not in my mind). But he wasn’t that way and man, I felt almost giddy with relief.

Collection jug

Back to my bones. I've lost a quarter inch in height over the last couple of years. That didn't bother him although I'm bothered. I'm not so tall that I can throw away quarter inches here and there. He said that my left hip values actually indicate osteoporosis, not osteopenia as originally diagnosed, and because my right hip fractured, that counts as osteoporosis too. I was really bothered by that change in diagnosis, too.

He wants to rule out easy-to-fix causes of bone loss so he’ll check for celiac disease, and he’s also having me do a 24-hour urine collection so he can check to see if my kidneys are tossing away calcium. If both come back normal (or as he said, as boring as all the rest of my labs, where boring = healthy and normal), then I have three drug options to choose from to treat the osteoporosis. I’m working from home today doing the collection. I’ll take that jug to his office tomorrow between two other cancer-related medical appointments, and get blood drawn for the rest of those labs. Once I get the lab results, and assuming that I don't have an easy-to-fix cause for the bone loss, I’ll cross that drug choice bridge.