I guess this little moral of the story is about asking the right person.
Side note before the story: radiation burns have stopped hurting! Am now into the peeling/itchy phase. Far preferable to pain.
Ok, well, it’s been quite a day. Backing-up for a start: When I finished chemo in August, I asked about heart screening post-chemo just to make sure the chemo hadn’t damaged my heart, and was told that that wasn’t routine, done only if there were symptoms. When I started my fitness class 10 weeks ago, my heart rate was high. I assumed it just meant that I was out of shape and it would get better. I even asked the fitness class oncology nurse about it, she said we’d watch it. Well, it continued to get worse, so that I could exercise less and less (not allowed to go above 125). When I was a few weeks into radiation, and it was getting worse, I asked her again, and she said with radiation I’d be lucky to finish up better, but it would likely get worse.
Six weeks ago I started having heart palpitations (was that when I had that cold? it’s all a foggy blur) and then in early Nov I had an unexplained weight gain – 6 lbs in a week, which seemed like too much to me. I asked two rads onc nurses about it, but they weren’t alarmed. A week later, I asked the radiation oncologist if I should be concerned, and he said no. And that the radiation wasn’t causing the heart racing, or the weight gain, that there were lots of reasons for weight gain.
There was one weekend when I considered going to the ER, but since 5 hour waits are not my thing, and I have a personal policy of not going unless I’m gushing blood or some such, I canceled that idea. And then things got a little better, and I was dealing with radiation, and I forgot about it again.
This week the heart racing got bad enough to wake me from a sound sleep, so I finally called my PCP. Their findings: Ankles are swollen etc. (bad sign for heart stuff), so I was right to be concerned about the rapid weight gain. And apparently I have a heart murmur. News to me (or perhaps more accurately, new to me?).
Preliminary EKG while I was in the office was normal (yay!), but they sent me home with a holter monitor, a portable EKG. So I am hooked up, with leads and a little EKG recording machine hanging around my neck. (48 hours with no shower, ewwww. Wish I’d thought of that before I went to the doc! And my chest looks like a small war zone: port scar, radiation burns, EKG leads….this for some odd reason cracks me up as I’m writing it – why I’m laughing I don’t know, I think that cancer has twisted my sense of humor.)
Echocardiogram is set up for Monday afternoon. Thyroid was fine in September, but labs were taken today to check it again. I wonder why no chest x-ray? Hmmm….. The whole appt process took almost 3 hours, and I was just so relieved that I got to leave, that they let me go free.
My most sincere hope, since the heart racing happens mostly with hot flashes at night (chemo-caused) is that it’s just a temporary hormonal thing and that it will stop soon. Though one doc today said, “Oh that’s terrible, you poor thing you, losing all that sleep.” As if that were the most terrible thing. I just looked at her with bewildered amazement – thinking….”ummm…..welcome to my life, that’s what hot flashes at night do silly, they wake you up.” I think she was just a little overwhelmed at all that I’ve been through, and now this. Which hopefully will be nothing, but she didn’t think so, and named several scary-sounding heart things when I asked her for her off-the-cuff gut-level diagnosis. And she was being overly nice after examining me and that makes me downright paranoid with doctors. And she was the 2nd doctor to examine me (the first was a resident), which makes me paranoid as well, but maybe that’s normal with resident and senior docs?
However, I am not going to be alarmed about any of it until a) the tests are done and b) a cardiologist gives me his/her diagnosis. My mom and honorary Uncle Dan will remember that I’ve been through this before, back in March, when an ER doc diagnosed me with a 90% chance of congestive heart failure (he was wrong BTW) based on a blood test. The blood test measured sky high that day, and two days later – it was so low it didn’t even register. And my echo then was CLEAR. So, we got all upset over one little piece of data, and it turned out to be nothing. Moral of that story was: wait for the right person, the actual cardiologist. Let the heart doc diagnose heart stuff.
The upside: hopefully I’ll finally get a cardiologist on my medical team, because women who’ve been treated with adriamycin can and do get heart problems, and if they get caught EARLY then it’s all good. The “early” part, well, that’s the catch, since echos aren’t ordered unless there are symptoms and then it can be too late for the heart meds which are then prescribed to do a lot of good. So if I can get routine echos lined up that would be a good, good thing.
Wish me luck. Daily heart diaries are not my thing. Sheesh, I sound like I’m 90. Sigh…