As always, I am thankful to have medical insurance. I think it's unconscionable that our medical system is a for-profit enterprise, and that some people literally go bankrupt or die because they can't afford to be treated.
These are the amounts that were billed to our insurance company. We've already met our deductible for this coverage year, so we did not need to pay anything on these claims.
3/20/20: Maintenance Herceptin #5 + Lupron (Including Blood Work): $15,949.91
4/6/20: Echocardiogram Cardiologist: $243
4/6/20: Echocardiogram Hospital: $1,133
4/10/20: Maintenance Herceptin #6: $15,122.75
4/17/20: Lupron: $571.16
5/1/20: Maintenance Herceptin #7: $15,121.64
Total cost to date: $291,034.56
With insurance, cost to me: $4,254.63
Thursday, May 21, 2020
Wednesday, May 20, 2020
5/20/20: Maintenance Herceptin #8 + Medical Oncologist Appointment
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.
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.
Tuesday, May 19, 2020
5/19/20: (5 Months Post-Chemo) Still Wearing Hats
Thanks to this global pandemic, I'm actually quite content to not have any social outings at which I might have to explain why I am still covering my head 5 months after I finished chemo. My hair is growing in, but it's so thick and straight that it grows literally outward, like each hair is radiating from my head. Sure, it's funny. But I hate it. And I'm much too vain to let others see it. Here, I'm willing to post only a side view.
When I wear a hat, it flattens the hair, but the hair gets flattened every which way, so it just ends up looking like bed-head.
Besides the rimmed hats I got from Headcovers Unlimited, I've also been wearing slouchy beanie hats around the house. Those knit hats are getting too warm for spring, though. I'll need to find something cooler for the summer. Still, what with the pandemic going on, I'm actually relieved I don't need to worry about being seen too much.
When I wear a hat, it flattens the hair, but the hair gets flattened every which way, so it just ends up looking like bed-head.
Besides the rimmed hats I got from Headcovers Unlimited, I've also been wearing slouchy beanie hats around the house. Those knit hats are getting too warm for spring, though. I'll need to find something cooler for the summer. Still, what with the pandemic going on, I'm actually relieved I don't need to worry about being seen too much.
Sunday, May 17, 2020
5/17/20: Maybe Herceptin is Causing Carpal Tunnel Syndrome?
I'm still pushing through with side effects. It's been very frustrating and discouraging, but today, in one of the Facebook support pages, I came across a post that tied carpal tunnel syndrome to Herceptin.
This wasn't a connection I made before, even though "numbness or tingling in the hands, feet" is listed as a side effect for Herceptin. (I do also sometimes feel tingling in my toes, particularly when lying down on my back or sitting in a reclined position.) I think I didn't associate the numbness and tingling with Herceptin because those side effects started over 3 months after I started Herceptin, but it's only now that I've realized that the timing coincided with when I started the larger, 3-week dose of Herceptin! How did I miss that!?
Wearing wrist braces to sleep seems to be an effective piece of managing my symptoms, so it feels more and more like carpal tunnel syndrome is part of what's going on.
Wearing wrist braces to sleep seems to be an effective piece of managing my symptoms, so it feels more and more like carpal tunnel syndrome is part of what's going on.
None of the formal-looking lists I found for Herceptin side effects named carpal tunnel syndrome specifically, but a Google search returned a handful of less official-looking pages that linked the two. My oncologist did mention carpal tunnel at the appointment when I first reported the numbness and tingling in my hands, but she didn't suggest it was because of Herceptin. Maybe she made the connection in her head. I wondered at the time why I would suddenly have carpal tunnel syndrome.
Anyway, it's remarkable how a bit of hope can change one's attitude. As if life during a global pandemic isn't hard enough, every day I spend a significant amount of mental and physical energy trying to manage my symptoms. It's disheartening to think about living with these symptoms forever, or for as long as I'm taking Lupron (which is presumably until I reach natural menopause, or decide to remove my ovaries, which would come with its own set of side effects). My numb and tingly hands may or may not be caused by Herceptin, but just having the hope that they might go away when my Herceptin treatments end helps me to stay positive and optimistic.
Friday, May 15, 2020
5/15/20: Lupron
Another quick and easy appointment. In and out in 15 minutes.
Again, I called my infusion nurse from my car as soon as I arrived, so they could get a head start on ordering the Lupron from the pharmacy.
The only noteworthy thing from today's visit is that the medical assistant had a new thermometer. They used to take my temperature at every appointment with a thermometer with a disposable tip that goes under the tongue. With the mask requirement because of the coronavirus, I had to pull down my mask to get my temperature taken. Now they are using a new thermometer that gets swiped across my forehead, so the mask can stay put.
Again, I called my infusion nurse from my car as soon as I arrived, so they could get a head start on ordering the Lupron from the pharmacy.
The only noteworthy thing from today's visit is that the medical assistant had a new thermometer. They used to take my temperature at every appointment with a thermometer with a disposable tip that goes under the tongue. With the mask requirement because of the coronavirus, I had to pull down my mask to get my temperature taken. Now they are using a new thermometer that gets swiped across my forehead, so the mask can stay put.
Friday, May 1, 2020
5/1/20: Maintenance Herceptin #7
My Cancer Center is 30 minutes away, and usually I give myself extra time, just in case. These days, with my state's stay-at-home advisory, there's no traffic to worry about. I still arrived a bit early, but I decided to stay in my car until just before my appointment time of 9:30, to minimize my time in the building. Standing outside the automatic doors, I could see someone at the reception desk already, so I waited until he was finished before going in.
I got a surgical mask, checked in, and was directed to go straight upstairs, again bypassing my usual appointment with the port nurse. I think this time it was to minimize person-to-person interactions. I sat in the waiting area for a few minutes before being called in.
As usual, the medical assistant took my vitals. I was happy to see my weight holding steady. I have to say, watching my weight go up has been one more unhappy part of this cancer journey. I'm much more conscious of what I eat, and I'm exercising more than before, but I guess medications and hormones matter more. Either because of the hormone therapy itself, or because of the menopause resulting from hormone therapy, not only have I gained weight, but the fat has unflatteringly been redistributed around my belly, which of course is only exaggerated by my flat chest. Bah. I never really thought of myself as vain before, but I guess I was just comfortable in my old body; now that I'm not so comfortable with my hair and chest and belly, I'm way more self-conscious than before.
Anyway, my "new" nurse came in as soon as I got settled in my bay. I appreciated a lot that she spent quite a bit of time talking with me about how I'm feeling, both emotionally and in regards to my numb and tingly and puffy hands.
She accessed my port and, interestingly, she put on a gown for the process. This was new. She said it's just one of the many new protocols that are in place because of the coronavirus.
I started Herceptin around 10:30, and finished a little after 11:00. I used the bathroom to wash my hands just before leaving the building. Today's visit was pretty efficient, less than 2 hours.
I got a surgical mask, checked in, and was directed to go straight upstairs, again bypassing my usual appointment with the port nurse. I think this time it was to minimize person-to-person interactions. I sat in the waiting area for a few minutes before being called in.
As usual, the medical assistant took my vitals. I was happy to see my weight holding steady. I have to say, watching my weight go up has been one more unhappy part of this cancer journey. I'm much more conscious of what I eat, and I'm exercising more than before, but I guess medications and hormones matter more. Either because of the hormone therapy itself, or because of the menopause resulting from hormone therapy, not only have I gained weight, but the fat has unflatteringly been redistributed around my belly, which of course is only exaggerated by my flat chest. Bah. I never really thought of myself as vain before, but I guess I was just comfortable in my old body; now that I'm not so comfortable with my hair and chest and belly, I'm way more self-conscious than before.
Anyway, my "new" nurse came in as soon as I got settled in my bay. I appreciated a lot that she spent quite a bit of time talking with me about how I'm feeling, both emotionally and in regards to my numb and tingly and puffy hands.
She accessed my port and, interestingly, she put on a gown for the process. This was new. She said it's just one of the many new protocols that are in place because of the coronavirus.
I started Herceptin around 10:30, and finished a little after 11:00. I used the bathroom to wash my hands just before leaving the building. Today's visit was pretty efficient, less than 2 hours.
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