A follow up to the heart rate stuff

I saw my medical oncologist’s physician’s assistant yesterday—first time I’d met her. Somehow the message I’d sent through the portal and was why the MO’s office set up that appointment yesterday, didn’t make it into why I was there. Frustrating.

Anyway, I recapped things with the nurse and then the PA:

Runner for decades, three things have changed in my world in the last few months. About 10 days after starting the tamoxifen, I started having heart rate spikes while running. Tamoxifen was the only thing I could stop and maybe see if that’s what caused the issue, even knowing that it’s got a half life of four to six weeks (meaning it sticks around that long after stopping the medication). Heart rate is better but still spikes but I also still have three of the very common side effects from tamoxifen.

Both the nurse and the PA asked how high my heart rate had spiked—176, 189, those were the two I shared. The PA said ok clearly that’s off because your pulse just now was 48. YES. THAT’S EXACTLY WHY I’M CONCERNED.

You can see this
morning's spike

For now I’m still not taking the tamoxifen. She said that indeed it can take four to six weeks for the drug to leave, and I’m just now at three weeks. She strongly recommended a stress test, so I’ve pinged my primary care physician for a referral.

Neither the PA or I expect any heart issues to show up; I’ve got no family history to speak of, and I’m in really good shape. But then again, I will never say never again. I also have no family history of melanoma, or breast cancer . . . and here I am.

Yesterday’s run was great: no heart rate spikes, decent times for what was intended to be an easy run and I even did negative splits. I tried running again this morning since we have snow coming later today, which will probably mean no running tomorrow. Within 10 seconds, my heart rate was up to 160. So things are slowly getting better but not fully resolved.

And I'm done

I did not expect side effects from the tamoxifen to kick in at such a low dose. But as I mentioned earlier, I've been having heart rate issues on my runs. Today's run if it can be called that was the worst so far.

I'm training for the next 10K race on November 9 and today's run should have been an easy 7 miles, keeping my pulse nice and low. Everything else felt great: lungs, legs, even the left pec was behaving. Unfortunately even before I finished one mile at a super slow pace, my heart rate spiked to 176.

I've been running with a Garmin for a couple of years, and a FitBit for three years before that so I know how my heart behaves and this? Is not it.

So I'm done with the tamoxifen. I'll take my chances on recurrence without the drug and focus on that 40% risk reduction offered by exercise and weight.

Tomorrow is D Day

In April, when I was diagnosed with breast cancer, my medical oncologist laid out his preferred plan of treatment after I’d had surgery and radiation. Because I’d been diagnosed with osteopenia (later changed to osteoporosis by my endocrinologist), aromatase inhibitors were off the table. They weaken bones and mine are already compromised. So instead, he told me I would be taking tamoxifen, 20 mg a day for probably five years, maybe more.

I'm not at all excited about taking tamoxifen. It's got some well-known common side effects that would greatly interfere with activities I enjoy. I'm not sure how much I'm willing to tolerate there, to be honest, especially since tamoxifen reduces the risk of cancer recurring by less than 10% for me. Diet and exercise give me far more bang for the buck with a 40% reduction in risk. Still, I'm not as low risk as I would have hoped, and one of the pathology reports indicated I had some lymphovascular invasion. That isn't necessarily a sign that this cancer will return or metastasize some place else but it's something to keep in mind.

So I’ve wrestled with whether I’m up for going on this drug. And as I told my MO, I had already signed up for a 10K race—the Plaza 10K which was two weeks ago—and I didn’t want to go on anything until after that race.

He agreed to that delay, which of course I’ve scope creeped by adding in two more 10K races, which were all part of the Heartland 30K Challenge (you can read about the Challenge here and I'll write more about those races later this week). And in the meantime, I ended up going on Prolia a week ago last Friday. Again, I would have preferred to start that drug after these three races were over, but my hip hurts all the time where I broke it and I’m highly, highly motivated to save my bones from something I clearly have.

In the last 10 days, I’ve unfortunately experienced some side effects from Prolia. That’s a little discouraging to be honest. Joint pain where I’ve never had any joint pain, muscle pain too, dry mouth—nothing major but still annoying. But at least I know what the Prolia feels like on its own.

And now tomorrow I guess I’ll find out what the tamoxifen feels like. I’m doing the slowest ramp up in the world—I’m starting with 5 mg a day and I’ll see how that feels. If I’m lucky and don’t have any side effects, I’ll go to 10 mg. But slow and steady is my motto on this part of my cancer treatment.

Bought a fancy pants pill splitter just for this drug.

There’s no pretty bow on the package

I’m at that stage of cancer treatment where people ask me how I’m doing with the clear and obvious expectation that I’ll say “doing great! Everything is wonderful!” They’ll say something like “so you’re OK now, right? The cancer is gone, right?”

The thing is, that’s not how this works. While my long-term prognosis is good, there’s absolutely no way to know if I’m cancer free. Cells are tiny, and even with surgery you can never be sure all of them were removed. That’s why most of us get additional treatment too: radiation to kill anything left in the surgery area, chemo depending on the kind of cancer, and drugs taken long-term to help starve any cancer cells that escaped the other treatments. As one article I read put it: you’ll know you’re cancer-free when you die from something else.

And now I’m dealing with physical, emotional and mental fallout from the cancer. I’m a survivor of childhood sexual abuse, and did a lot of work in my 30s recovering from that. Much to my horrified and complete surprise, this diagnosis and especially some of the tests or procedures has brought back the PTSD with a roaring nasty vengeance. I’m back to the hyper awareness that served me well as a small child but is completely exhausting as an adult. I’m having to dig back into the past, not a fun place to go, and recategorize and recode all of those memories in light of some of the procedures I found so traumatizing. All very vague, sorry not sorry—here’s a small example. I’ve had I don’t know, three or four MRIs of my head and did just fine with those. But the breast MRI about undid me—backwards and face down. As I told my radiology oncologist when she questioned why I asked for something to calm me down, that was a bridge way too far.

And I’m still trying to find my new normal in the physical sense. As I told the psychologist I’m seeing through the breast cancer center, I see the evidence of this disease every single time I get into the shower and get out of the shower. I still have limited range of motion in my left arm despite doing everything I’m supposed to do. My running is impeded by both my reduced stamina from radiation and from the continuing pain in my left pec (which also got radiated) and my left arm. You know it’s bad when I tell you that I often have to sort of hook my left hand into my waistband to give everything a rest.

I’ve been seeing the OT for about 6 weeks; on Friday (which should have been my last appointment) she recommended another 4 weeks. Unfortunately, I think she’s right.

I’ll also say I am not looking forward to the pinkification and sexualization of breast cancer next month. Please, I implore you, say no to the pink, worry less about saving the tahtahs and more about helping us save our lives. 

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.

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.

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.

Nearly halfway through

I’ll have my 10th radiation treatment today. I learned earlier this week that the last five treatments are what’s called boosts. I’m not sure if I’m getting what’s described near the end of this page, or if it’s more like what’s described here. All I know for sure is that it will be once a day, and in a different room with a different machine and a different tech.

Speaking of techs, my current crew are great. They’re always upbeat and we end up laughing a lot as they get me all set up. Every day, I have to tell them my full name, my birthday and what's getting radiation. So I mix up the order, yesterday I used my full name (which sparked a discussion about maiden names as middle names), one time I told them my birthday and added in that it's still the day after Groundhog's Day, silly stuff like that. And every day I tell them that I did my darndest to wash off the Sharpie marks they draw on the tattoos (it’s true, I really do try) and every day they just laugh and draw them on again.

They told me after my second or third treatment that they really like having me at the end of the day because I’m upbeat. They get a lot of patients who are angry, and that’s hard for them. Personally, I’m cheering on the radiation because the whole point of these treatments is to kill any stray cancer cells in my breast.

Of course, the radiation is also killing good cells. That’s the downside for sure, well that and any damage to my heart, lungs or ribs that may occur. My skin is pinker now, no surprise there, and my nipple is sore. I tried to go without a bra one night last week (I have worn a bra 24x7 since the biopsy because it’s been too uncomfortable otherwise and I'm getting really tired of that). After an hour, I gave up because the chafing from my soft cotton t shirt was too much.

I’m getting slightly pink on my back. That also doesn’t surprise me. I’m pretty thin, especially on my torso, so I’m guessing the radiation is just passing on through. It’s not horrible, just stings like the most mild of sunburns.

And my left pectoral is getting tight. That too is pretty normal. When I saw the occupational specialist earlier this week for a lymphedema check, I mentioned it to her. She pointed out that all the cells are getting damaged which is why the pectoral gets tight.

Yesterday the fatigue hit pretty hard. I did a good challenging run yesterday morning, so I’d have been tired anyway. But this was different, it’s more like I ran out of gas. For someone like me who’s an energizer bunny, this is disconcerting even if it’s expected. I’m working from home today but not putting in my best work, that’s for sure.

I’ve also got compression sleeves on order. There’s a good chance I’ll need to go to the Philippines later this year and for flights over four hours, compression sleeves are recommended. They weren’t cheap (I went for patterns, not granny-style beige), but hopefully I’m easy on them and they last a long time.