Thursday, July 18, 2019

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.

Sunday, July 14, 2019

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.

Friday, July 12, 2019

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.

Friday, July 5, 2019

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 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.

Saturday, June 29, 2019

We said goodbye to Chloe this morning

I mentioned that she had chronic kidney disease and high blood pressure. She did pretty well the first week after she was diagnosed, although a lot of that probably had to do with the IV fluids they gave her. And initially she was all about eating the new special kidney food.

But that didn't last and by Wednesday this week, I could see that she'd dropped more weight. Since she really had nothing to lose, she looked like a bag of bones. And also on Wednesday she stopped eating her new wet food.

Now if you knew Chloe, then you'd know what a departure that was for her. That girl loved her canned food, it was the highlight of her day and she made sure we knew it was time to feed her, usually a couple of hours before it actually was time to feed her.

Then yesterday I realized she wasn't drinking either. Chloe has always loved going into the shower after I'm done and licking up the water on the floor. Only yesterday she just perched there, not drinking. And she would always come watch me fill up the cat water fountain every day and then drink up. Only she was watching but not drinking.

Honestly she was so lethargic last night that I wasn't sure she would make it through the night. Since we leave tomorrow for a family reunion, I knew we needed to do the right thing by her. I've always promised her that when it was time to go, I would be there with her and I would love her enough to make that decision.

Kent and I were with her. She was on my lap on the bright pink crocheted blanket that was always her favorite. The vet completely agreed with our assessment of where she was. In fact when he gave her the sedative to relax her before the second final injection and she didn't complain at all or even twitch, he said this was absolutely the right time and the right decision.

So she had that peaceful, painless death. We said our goodbyes, paid the bill and now we're seeing our old girl out of the corners of our eyes. I know it will be that way for a while.

Rest in peace, Chloe Kitty Cat (1999--2019).


Thursday, June 27, 2019

Counting down

To the Plaza 10K race in September. This will be the first race since I fractured my pelvis last year. Thanks to my son, I've got a great training plan mapped out and I intend to follow every step of it.


Friday, June 21, 2019

I close my eyes

Wednesday I realized that I always close my eyes during my radiation treatments. So that day, I kept my eyes open.

I realized that closing my eyes was an almost instinctive thing, as though I were protecting my eyes. Which is silly for two reasons—first, the radiation isn’t aimed at my face. Second, even if it were, my eye lids wouldn’t keep it out anyway.

And yet I closed my eyes again yesterday and probably will for the remaining treatments.

I use the relative dark to feel my heartbeat and wait for the voice to tell me to “take a deep breath in and hold it.” I inhale through my nose (that’s the correct way for this deep inspirational breath) and expand my belly and rib cage up and out.

Then I count my heart beats as the machine makes a slight buzzing sound. I think that sound is on purpose, an auditory cue that yes, I’m getting radiated. I usually count to about 23 to 25, depending on my heart rate. The buzzing noise stops, the voice says “breath” and then the machine makes whirly noises as it’s moved to the second position. My eyes are still shut as I hear “take a deep breath and hold it” again, again I count my heart beats, listen to the buzzy noise until it stops, and I hear “breathe.” I exhale and open my eyes and that’s another day closer to being done with this part of my breast cancer treatment.