Our vacation in Stanley

I wanted to share some photos from that trip.

We're on our way!

View from the big house (we had two houses).

Kent as we hiked to Alpine Lake.

 Some photos from Alpine Lake.

 Kent took these--the second one was obviously on July 4. I was sound asleep!

A photo of all of us!

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.

Did I mention I hit a pothole and blew out my tire?

The last day of radiation treatments (Friday, June 28), I hit a huge pothole on Ward Parkway and blew out my front right tire.

If you don’t live in the Kansas City area, that won’t mean anything to you, but if you’re a KC person, you’ll know exactly what I’m talking about.

You can see more about those infamous potholes here, here, and here.

I actually live in Kansas, but I work in downtown Kansas City, which is in Missouri. So, I pay for the privilege of driving on Kansas City, MO roads every year. Those taxes are supposed to go for the wear and tear I inflict on those roads. This entire idea is a complete joke, and the potholes on Ward Parkway and really on most KC MO streets are both gigantic and prolific.

And that Friday morning, I hit one. I knew immediately it was bad and in fact it was so bad the tire deflated too fast for the low tire pressure light to come on. I was able to get off Ward Parkway and onto a side street, and even better Kent was still at home and came out to change the tire.

Yes, I do know how to change a tire. But as Kent said, the lug nuts were on so tightly that I would never have been able to get them off. He kindly changed the tire and I got to work. But because the spare is a donut and because it was under inflated, my steering was all messed up.

Keep in mind, we knew that Chloe was not doing well and I suspected we would end up taking her to the vet the next day but hoped she would somehow rally.

As I left the office that afternoon to head to my last radiation treatment, I really thought the car wasn’t going to make it there (some three miles away). That’s how bad the steering had gotten and how low the tire felt. I called Kent and told him I was taking it directly to the dealership after radiation, even though we didn’t need to have the car there until the next morning. I feared that the donut tire would completely deflate overnight and then we’d really have problems.

So I never did celebrate the end of radiation. That next day, we said goodbye to Chloe, I shelled out nearly $500 to fix my car and we zoomed around like crazy people getting ready for our trip.

More about the trip another day.

The radiation boosts

I realized I forgot to talk about the radiation boosts. It’s been a crazy couple of weeks, and I do want to get this down while everything is pretty fresh.

I had 20 treatments, one a day five days a week. The first 15 were the ones I mentioned earlier and zapped the entire breast from two directions. The last five were the boosts.

For the first 15 treatments, the first zap came from slightly from the bottom and to the right of my breast (5 o’clock) and included the entire right side of my left breast extending up a bit onto my upper chest. This picture gives a pretty good idea of what I mean. You can see the field of radiation on my skin now, some two weeks after the treatments are done, my skin is a bit brown and all the pores are slightly red. It’s like I have a weird rash.

The second zap came from the left side or 9 o’clock and aimed from the left toward my chest. It caught my underarm where the sentinel node incision is. That one annoyed both incisions.

But the boosts were different. Instead of having four X’s drawn on me, the radiation tech drew a demented circle starting at my nipple and extending down and around to the left. The field of radiation was entirely that left side of my left breast centered right on the incision on the breast (which outlines the nipple, it’s just over half the circumference). And I got one zap per day. I also noticed those didn’t last as long as either of the two zaps during normal radiation (I never thought I would use the word normal with radiation). The boosts really bothered the incision and my nipple. In fact, I’m still peeling two weeks later—just glad I didn’t have any blisters. Altogether I had 50.5 centiGrays.

I saw the radiation oncologist at that last visit—he examined my skin and was pleased with how well I did and asked about the fatigue. I told him I definitely was fatigued, and I asked how long that would take to resolve. I was a little dismayed when he said four to six months. Yeesh. I didn’t want to believe that, but I’m here to say that this week—two weeks after finishing radiation—I’m just completely out of gas. Still, I’m glad he told me otherwise I’d be getting down on myself for being a slacker.

Stanley Idaho

What a week this has been here in Stanley Idaho. We've been planning this family reunion (if I may use that term when in fact it’s about half the family) for months. Originally we were intending for this to be a way for my folks to spend time with my children and their children, however the list grew and my sister and her family also came.

I think the absolutely best part of this trip has been seeing my grandchildren make friends with my niece and nephew. I’m nine years older than my sister and had my children quite young; she had hers in her mid to late 30s so these kids, while not truly cousins, operate as cousins. And it’s been wonderful to see. We’ve also done a fair number of mountain-based, outdoor based activities:

• Done a bunch of different hikes (I loved the hike to Alpine Lake)

• Gone for an all day horseback riding trip

• Visited a ghost town

• Visited Sun Valley

We did not go to Stanley’s 4th of July parade. Instead, we celebrated my sister’s upcoming 50th birthday. At least that’s what I thought the plan was. To my complete surprise, my family also celebrated me in this whole breast cancer thing. The cards completely undid me, as did the St. Agnes medal from my mother, which was an homage to an award she gave me when as a little girl I burned myself on an iron. And Ben gave a huge nod to my gamer ways and read this:

Which was accompanied by this:

Today we begin going our separate ways. Amy and her family head back to Denver, then tomorrow the rest of us head home. This has been an amazing week, and I'm so grateful to my folks for making it possible.