8/23/20: (1 Year Post-DMX) Cancerversary

Another date that marks another milestone. A year ago today, a skilled surgeon cut the cancer out of me. Once the pathology report came back clear, he declared me tumor-free. Later on, an oncology nurse used the term NED, no evidence of disease. (They were careful not to use the phrase "cancer-free" because it's impossible to know whether or not any rogue cancer cells are still lurking somewhere in my body.)

I'm not really sure how I feel. I don't think I feel particularly celebratory.

Cancer has hijacked my life for more than a year now, and I still feel like I'm in the middle of it. Surgery and chemo don't feel like they are "behind me". Some parts of my chest and underarms still feel numb from surgery. I know the numbness can actually be permanent, so I'm not expecting it to go away, but I guess I'm hoping I'll wake up one day and feel used to it. Like maybe it could feel familiar instead of weird.

Chemo doesn't feel "over and done with" either because I'm still wondering if the neuropathy in my fingers (and occasionally in my toes) could be a lingering side-effect. Plus I'm dying for my hair to grow back. I still wear a hat any time I leave the house. Yes, I'm grateful that my hair is growing back thick and black, but I hate the way it looks. It stands up more than it falls downward, and it looks like a helmet! Ugh! I really had no idea I was so vain. 

Side effects from hormone therapy seem to be getting worse. Thanks to the Lupron, hot flashes are common and annoying. Exemestane continues to cause joint stiffness. It's mostly in my fingers, but I can feel it in my legs, too. Any time I go up and down stairs, it's like it takes effort to bend my ankles. In the time it takes to cook dinner, my legs feel so stiff that sitting down to eat is a huge relief. And any time I stand up after sitting down, my knees crack. 

I have 2 infusions left for Herceptin. Still waiting for my port removal to be scheduled. Maybe once I'm past those two things, I'll feel more like I'm moving forward. 

I think I do feel frustrated. I miss feeling comfortable in my own body, and not being hyper-focused on ailments. I guess I feel kind of resigned, and wistful for my old self. 

Still, I'm optimistic that I'll one day feel "normal" again. This pandemic sure doesn't help, since nothing feels "normal" to anybody. Maybe when life out there settles into a "new normal", it'll be easier for me to do the same.

8/19/20: The Hospital Called Me

They were ready to schedule my port removal!

I was super excited to set a date, and then I thought... They were scheduling me to have the procedure done at my local satellite hospital location, so does that mean I'd have the same surgeon who performed my port placement, and also my re-stitch? The woman on the phone confirmed it would be the same doctor. I wasn't sure how to say what I wanted to say, I think I even started like, "I'm not sure how to say this..." I am so bad at confrontations, even if I know I am justified in what I am saying, I always worry about offending people! 

I explained that I was very comfortable with this doctor, I enjoyed meeting him, and he was always perfectly pleasant, but... my original incision didn't heal properly for months, and when it was finally re-stitched, not only did it re-open again, but there is still a tiny stitch that was left inside. I don't know that any of this was the doctor's fault, maybe my wound just didn't want to heal... At that point, the woman on the phone said she completely understood what I was saying, and she would work with my oncologist's office to get me scheduled at the main hospital in the city. She reassured me by insisting that I am the patient, so I get to decide what I want to do. She downright encouraged me to do what I think is best for myself! I really appreciated her helpful words, and was relieved and glad I spoke up.

I really don't know if the problems I've had with my incision have anything to do with the doctor who performed the procedures. But the way I figure it, if I did NOT ask for a new doctor, and if my final closure after port removal still goes poorly, I will regret not having asked for a new doctor. But if I DID ask for a new doctor, and the final closure still goes poorly, then at least I'll know I tried.

I'm still not even sure that I'll have any control over which doctor I get. When I had a previous appointment with interventional radiology, I remember asking which doctor I would see, and I was told that my appointment isn't with a particular doctor, it just depends on who is on duty at the time. I'll ask again this time, I wonder if I can at least request to not have a particular doctor.

8/14/20: Maintenance Herceptin #12

Today when the medical assistant took my blood pressure, the diastolic number was a very high 106. She took it again, and it was down to a very normal 77. 

In recent visits this has been a relatively common occurrence: my first blood pressure measurement is high, so they take it again, and the second time it's normal. Not sure what that means. Do I come into appointments feeling anxious, and need to consciously calm down? I don't think I feel any more anxious about my appointments now than before. Anyway, my infusion nurse pointed out that my cardio-oncologist thought my blood pressure was fine, so I guess it's nothing to worry about.

She also mentioned that she'd ask my oncologist about scheduling me for port removal. After today, I have only 2 infusions left!! She said they might even schedule me in before my last treatment, which is fine because the Herceptin infusion can always be done via an IV in the arm. 

I'm looking forward to getting the port out. I'm so tired at looking at the ugly scar, I really hope they can clean it up when the port comes out... Given how the other procedures went, though, I guess I'll cross my fingers, but I won't hold my breath. The tiny non-dissolvable stitch is still there, too; it doesn't hurt or anything, but it just bothers me that it's there, and I'll be glad when it's out. 

8/13/20: I Emailed My Cardio-Oncologist

My cardio-oncologist had asked me to monitor my blood pressure at home and let her know the results. Conveniently, Ken already has a home blood pressure monitor.

I've been taking measurements 3 times a day. For the most part, my systolic blood pressure (the top number) is in the 110s to 120s, and my diastolic blood pressure (the bottom number) is in the 80s, occasionally rising into the low 90s or dropping into the high 70s. Most of my measurements are under the 140/90 limit, but the bottom number does like to creep up above 90.  

Last night I used the online patient portal to send my cardio-oncologist a message with 5 days of blood pressure data. I was pleasantly surprised to get a quick response from her this morning. She said my numbers were "very reassuring". 

I'll still keep an eye on my blood pressure, but I'll try not to worry about it too much. It's all a bit depressing actually; having to think about my blood pressure makes me feel old.

8/7/20: My Cardio-Oncologist Called Me

I wasn't even expecting a call! 

She called to let me know that she wasn't able to get that other measurement she mentioned at my appointment. She said it's not a problem, everything else still looks normal. 

She reminded me to keep an eye on my blood pressure and to send her an update via the online patient portal with a few days' worth of data. 

I asked her what the treshold was for "high" blood pressure, and she said 140/90 is the upper limit of what we want to see. 

8/7/20: Lupron

I overslept this morning! I had a 10:00 appointment, which means I'd normally leave the house at 9:15; the drive is a solid 30 minutes, and I like to leave a little extra time in case of traffic, plus I like being early. 

Well, I woke up at 9:25. I sat up in a panic thinking, "What day is it?! Where am I supposed to be?!" It took me a few moments before I realized I had 5 minutes to get ready and be out the door. I rushed around and left the house a little after 9:30. I literally walked through the hospital doors at 10:00 exactly. 

I wasn't late, and I'm sure this story doesn't seem like a big deal to most people. But I am just the type of person who likes to arrive early to everything, and being late stresses me out. Especially now that I'm hyper-conscious of my blood pressure, I'd just like to avoid unnecessary anxiety!

Anyway, today's appointment was just for Lupron, so it was a quick 15-minute visit. 

My infusion nurse asked how my cardiology appointment went. I said I was given the green light to continue with Herceptin. I also mentioned how the appointment made me aware of how every part of my health, including my cholesterol and blood pressure, might have a connection to my cancer treatment. There wasn't much for her to say, though she gave me a few words of support, reminding me that no matter how "normal" going to the Cancer Center may seem to me now, it's still a stressful thing to have to do, on top of the pandemic, so basically I shouldn't be too hard on myself, that these developments are understandable in my situation. 

8/6/20: Cardio-Oncology Appointment

I was anxious going into this appointment, though I don't know exactly why. I had already figured that whatever the cardio-oncologist said, I'd be okay with it, even if she recommended stopping Herceptin, or taking medication.

In the exam room, a nurse did a quick EKG. She also took my blood pressure and remarked that it was high.

For a few months now, sometimes when I've gotten my vitals taken before treatment, my blood pressure has been a little high. Not consistently, but it used to fluctuate among the green, yellow, and orange zones of the table on this page, and now it fluctuates among the yellow, orange, and lighter red zones. By chance, at my recent PCP appointment, my blood pressure was perfectly in the green zone, so high blood pressure wasn't something we discussed. 

Incidentally, my blood work from the PCP appointment also came back showing high cholesterol. This blog is all about my cancer, so I didn't think it was relevant, but at today's appointment, the cardio-oncologist asked about both my blood pressure and cholesterol. Of course they are both related to heart health, which is now being affected by Herceptin. I also did some Googling, and it turns out that there's a connection between menopause and high blood pressure, and also between menopause and high cholesterol. It's difficult to identify a direct cause, but since I do have hormone therapy to thank for chemically-induced menopause, maybe they are cancer-related after all. I'll have to work harder at exercising and eating well.

Anyway, the cardio-oncologist asked me a lot of questions. I don't think I have any symptoms of heart failure. She listened to my heart, which sounded normal. In the end, she didn't think there was anything to be concerned about. Phew! I can finish my Herceptin treatments. 

She said she doesn't usually worry until the ejection fraction gets to 50%, and also that the ejection fraction isn't an exact measurement, so there's wiggle room. 

She also mentioned another measurement that is not always reported on echocardiograms, I think she called it the strain. She said she would follow up with the cardiologist who authored my echocardiogram report to see if they could provide this measurement. If it turns out to be problematic, she would consider putting me on some kind of medication. If the measurement is not available, then we'd proceed assuming it's fine. 

Basically there is no action to be taken at this point, but she assured me that she usually acts aggressively to protect the heart, especially for someone my age. I did find that reassuring, because it means my case really must not be very troubling.

I'll have a follow-up echocardiogram and appointment in a few months, after I'm finished with Herceptin. In the meantime, she recommended I keep an eye on my blood pressure using a home monitor, and maybe even send her some data (a couple measurements over a few days) through the online patient portal. 

8/3/20: The Cardiology Department Called Me

Someone from my hospital's cardiology department called and said my oncologist had put in an order for me to see a cardio-oncologist. This person was so pleasant and friendly, I wish all phone conversations with customer service and administrative assistants could go so well!

Normally, I'd have to go to the main hospital in the city, but I lucked out; the cardio-oncologist sees patients at a local satellite office once a month, and my appointment request came just in time for me to see her on Thursday at a nearby suburban site. It's not the same location as my Cancer Center, but about the same distance away in the opposite direction. 

I haven't heard from my oncologist's office. I'm guessing they won't call, and that the referral to the cardiologist basically serves as the "action taken" in response to my phone call. I do wonder... If I hadn't called them about my echocardiogram results, would they have called me? I have to assume that my oncologist saw the echocardiogram report. Maybe she wasn't worried and wouldn't have said anything, but the mere fact that I expressed concern prompted her to send me to the cardio-oncologist, since it's obviously something I want to address? Or maybe she would have called, but I just happened to call her before she got around to it? Judging from the responses I got to my posts in Facebook support groups, it sounds like seeing a cardiologist is the appropriate course of action, and it makes me think again about how important it is for me to be on top of my own medical care. 

Anyway, I didn't think of it right away, but a couple hours later I remembered to call my PCP's referral line to get a referral to the cardiologist. 

Incidentally, I also called them a couple weeks ago to renew my referral with the genetic counselor. I wasn't sure if I needed one. I don't think the phone call counted as an actual appointment, but I figured it wouldn't hurt to have the referral.