Yesterday, the Cancer Center called to pre-screen me for today's appointment. Over the last few months, the number of COVID-19 screening questions has grown, and the questions have evolved. At first, they asked only if I'd travelled to China in the last 2 weeks, then they asked if I'd travelled internationally, and now they ask if I've left the state. They used to ask if I'd had a fever or respiratory symptoms, and now they also ask about other possible symptoms, like if I've lost my sense of taste or smell. And in terms of exposure, not only do they want to know if I've been in contact with anyone who has been diagnosed with or tested for COVID-19, they also want to know if I've been in contact with anyone who just shows symptoms of COVID-19.
I had an 8:45 appointment to get my port accessed and blood drawn, but around 9:00, the port nurse came out and said she had to check with my doctor because she didn't see any lab orders for me. Meanwhile, a medical assistant took my vitals.
It turned out that my oncologist did not require any blood work today, which threw me off a little because I was hoping to see if my vitamin D levels have improved. (The last time I checked, they were slightly better, but still below normal range.)
In the exam room, the medical assistant let me know that the doctor was running late. I had a book to read, so I didn't mind the wait.
The doctor came in around 9:45. We started out talking about how I've been feeling emotionally, and it occurred to me to say, "I bet you hear this kind of stuff from your patients all day long, just the same type of complaints from different people." She told a story of something that happened to another patient, along the same lines of what I had been saying, and it really helped in that "you are not alone" type of way. She said some supportive things, and it really felt strengthening.
I asked if my vitamin D deficiency was something I should be worried about. My vitamin D number is in the mid-20s, but normal range is 30-60. She said if my number was in the teens, then that would be concerning, and she might temporarily prescribe a weekly uber-dose of vitamin D to get the number back in the normal range. But with a number in the 20s, my 2000 IU supplement should be enough, plus we're coming up on summer, and the added sun exposure should help, too. She said she'd check my levels next time.
I also asked about my most recent echocardiogram. I checked my results online, and the primary number of interest, the ejection fraction, wasn't listed exactly. My first report had an ejection fraction of 63%, and the second report said 61%. This third report said only >=55%, with a note saying it was "visually estimated". The ejection fraction is affected by Herceptin, and some people have to discontinue treatment if the number gets too low. My doctor didn't know why this report didn't have an exact number, and she said she'd look into it. She pointed out that the range might not be informative enough; if my ejection fraction was actually as low as 55%, even though that's in the acceptable range, the precipitous drop would be concerning.
Then, I gave a full report on what's going on with my hands. She said the fact that symptoms get worse when I'm lying down makes her think it could be a pinched nerve in my spine. Apparently, sometimes one of the first things to try for a pinched nerve is physical therapy, so it's too bad I'm not able to see my physical therapist because of the coronavirus. She asked if doing yoga was within the realm of possibility. I said I used to do it a long time ago, so it's possible... She suggested doing yoga 3 or 4 times a week between now and my next appointment, and if there's no improvement, she might want to order an MRI.
There are medications that can be used to address numbness and tingling, but I said I am not too keen on taking medication for a side effect of another medication. I'd rather try to manage the symptoms in other ways.
I asked if she thought my symptoms might be related to Herceptin. She didn't seem familiar with a link between Herceptin and carpal tunnel syndrome, but she also said she "never says never", because the range of reactions to medication is so broad; it's not impossible. She said there's a stronger connection between Taxol and neuropathy, and it's possible for neuropathy to start even after finishing Taxol. In fact, she said that she usually advises patients to allow a full year for the effects of Taxol to subside. Either way, if I can just push through until next fall, maybe things will get better after I'm done with Herceptin, and with chemo farther behind me.
I also described the stiffness I've been feeling in my legs. Recently I've noticed that in the time it takes me to cook dinner, my legs feel so tight that when I sit down, it's a huge relief. But then, if I sit for even just a few minutes, standing up takes effort, and I feel a lot of discomfort in my legs for the first few seconds, until I'm able to walk it off. My doctor seemed confident that these symptoms are a side effect of the exemestane. I remember I first reported this symptom before I even started exemestane, and at the time she said it could be the Lupron. If it's hormone-related, maybe it's both. It's definitely gotten worse, so maybe the exemestane exacerbated it. In any case, she recommended doing leg stretches, which could also be accomplished with the yoga. Also, if the stiffness gets to be too much, I could try taking ibuprofen to relieve it.
Up in the infusion room, around 10:15, I got settled in a bay, and was immediately annoyed with myself because, despite having written down all my questions, I forgot to mention one of the symptoms that I thought was important. I felt like maybe it wasn't worth mentioning now, but my infusion nurse said if it was important to me, then I should say it. I appreciated that reassurance so much. I told her about the couple incidents when I woke up feeling like my fingers were being squeezed to the point of my circulation being cut off. She said she'd put it in her notes so my doctor would be aware of it. Also, she suggested wearing the wrist braces every night.
We discussed upcoming appointments, and she said my next oncology appointment would probably be with my doctor's NP, and after that, my appointments would alternate between the doctor and the NP. She must have sensed I was caught off guard by this news, because she then listed a series of positive things, like she was trying to allay my concerns. She said she thinks I will really like this NP, that it will be easier to get appointments (I won't have to move my infusion appointments from Fridays to Wednesdays, like I did today, in order to accomodate the doctor's schedule), that it's always good to have another point person for communications with the Cancer Center, and I can always request to see my doctor, if I want. I am actually pretty comfortable with the idea of seeing an NP, but I was feeling like I was just getting comfortable with my new oncologist, and now I'll have to get used to yet another provider. It felt like another "baby bird" moment. It's all fine. Just another step in the process.
I started the Herceptin just after 11:00. The infusion took the usual 30 minutes, then the infusion nurse de-accessed my port, I washed my hands in the restroom, and I was out by 11:45. So, 3 hours total, not including driving time.
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