9/13/24: Cost Update

Our high-deductible health plan runs from July to June, which means our deductible gets re-set on July 1. So far, it seems like I (along with the rest of my family) have enough medical appointments that we reach our deductible late in the coverage year, which means finally in June some appointments are 100% covered by insurance! And then we start all over again, paying a lot for appointments starting in July.

Here are the latest numbers, including the amount billed (which I add to the "total cost") and the amount I had to pay after insurance processed the claim (which I add to the "cost to me").

10/23/23: Anastrozole (generic): $545.99 (Covered by insurance)
1/11/24: BreastCare NP Appointment: $221.00 (I paid $195.29)
2/1/24: Anastrozole (generic): $545.99 (Covered by insurance)
4/27/24: Anastrozole (generic): $545.99 (Covered by insurance)
6/4/24: Medical Oncology NP Appointment: $221.00 (Covered by insurance)
6/4/24: Medical Oncology NP Hospital: $134.00 (Covered by insurance)
6/25/24: Cardiologist Appointment: $326.00 (Covered by insurance)
6/25/24: Cardiologist Hospital + EKG: $586.36 (Covered by insurance)
7/26/24: Anastrozole (generic): $545.99 (Covered by insurance)
8/14/24: Bone Density Radiologist: $44.00 (I paid $24.30)
8/14/24: Bone Density Hospital: $764.00 (I paid $304.90)
8/21/24: Echocardiogram Cardiologist: $230.00 (I paid $175.39)
8/21/24: Echocardiogram Hospital: $1,494.00 (I paid $1,348.20)

Total cost to date: $477,691.38
With insurance, cost to me: $16,908.63

8/22/24: Echocardiogram Results

Yesterday I had an echocardiogram. I'm sure the cardiologist is looking for any number of things in the results, but mainly I am interested in whether or not my ejection fraction is holding steady above 50%.

I got the results online and the first thing I noticed is that my online visit summary uses the word cardiomyopathy, which was interesting mainly because I don't recall my doctor actually using that word.

Anyway, I'm relieved that my ejection fraction is now 59%, which to me feels like a marked improvement from last year's 50-55%, though the report says "no significant change". It's still lower than my pre-Herceptin baseline of 63%, but I think it's high enough that I won't worry so much about it anymore.

8/9/23: My Cardiologist Called Me

She called to discuss my stress test results and said overall everything looks fine, she did not see anything alarming in the results. Yay!

She did mention that my heart function, i.e., my ejection fraction of 50-55%, was on the lower end of normal. She noted that it was comparable to my last measurement of 57%, so it's "normal" for me and not necessarily an indication of poor heart function; as long as it stays over 50%, I should be fine. I pointed out that my pre-Herceptin baseline was 63%, and she agreed that the decrease could have been caused by Herceptin, but there's no reason to think that it will go down any further. 

She confirmed we'll have an appointment next June (already scheduled), and at that time, she will probably schedule me for another echocardiogram to be done as a 1-year follow-up, just to make sure my ejection fraction is stable.

8/8/23: Cardiology Stress Test

Yesterday I had my cardiology stress test, which was recommended at my last cardiology appointment.

My cardiologist had told me that the doctor on duty to attend to the test may not be her, and it wasn't. It was another woman, who was masked! She was the only other person in the office, besides me, to wear a mask. 

I was told to avoid caffeine for 2 hours before the appointment, and to wear sneakers and comfortable clothes.  

There were 2 people in the room with me the whole time, a nurse (I think, she may have been a medical assistant, I'm not sure) and a technician. They were both very nice, but not talkative, which was okay with me. 

They had me change into a johnny from the waist up. The nurse put a bunch of leads onto my torso, all of them connected to a belt they had me wear, so the wires didn't get tangled. They did an echocardiogram and an EKG and also took my blood pressure, for baseline values.  

Before we could start, we had to wait for the cardiologist to come in and give the okay. The nurse told me the doctor was in with another patient, and we actually waited for like 15 minutes, in almost complete silence. Haha. It was fine. I really don't mind when doctors are late, because I always figure, if I'm the patient the doctor is with, I'd want them to take the time to make sure I got the care I needed.

The stress test was divided into 3-minute intervals, designed to quickly increase a person's heart rate while they walk. There was a treadmill right next to the examination table, and in front of the treadmill was a big poster showing a numerical scale, with numbers corresponding to descriptions like "very light" and "very, very hard". During each 3-minute interval, the nurse asked me to describe the level of exertion I felt, and she also took my blood pressure while I walked.

First, the treadmill was set to a slow speed and small incline.  For this first part, I think I said the effort felt "light".

After 3 minutes, the treadmill incline and speed automatically increased. I described the exertion at this point as in between "fairly light" and "fairly hard" - it wasn't either, it just felt fine.

After 3 more minutes, the treadmill incline and speed automatically increased again. This time, I think I said the exertion felt "fairly hard". Towards the end of this 3-minute interval, the cardiologist said I was doing well above average! 

The nurse asked if I wanted to do the next level, which many people don't even get to. She said the setting would be very fast, and some people choose to jog it. I was curious to see how fast the last setting would be, so I said yes to trying it. At the 3-minute mark, the treadmill incline and speed increased again. I did it as a very fast walk, which I described as "very hard"! They had me do it only for 2 minutes, instead of 3.

After a total of 11 minutes, they stopped the treadmill, and I was instructed to keep walking until the treadmill came to a complete stop. Then I had to lie down on the exam table and roll onto my left side as quickly as possible so that the technician could do an echocardiogram while my heart rate was at its peak. The nurse also took some EKG readings and measured my blood pressure.

The cardiologist looked at all the data in real time and said nothing jumped out at her as problematic. She was very reassuring, but was also careful to say that it would take a few hours to review the details, and she would send the report to my cardiologist.

Back at home, later the same day, I was able to see my report in the online patient portal. The word "normal" appeared a lot, so I hope it means everything is fine! The only thing I really noticed was that it said my ejection fraction is 50-55%. Back when I was getting regular echocardiograms while on Herceptin, my baseline pre-Herceptin ejection fraction was 63%, and my last measurement after stopping Herceptin was 57%. So, it does appear that my ejection fraction never fully recovered from Herceptin. I'll have to remember to ask my cardiologist if this is something I should be concerned about.

12/28/20: I Checked My Insurance Claims Online

The staggering cost of health care never ceases to amaze me. I am so thankful we have insurance. No one should have to go through cancer while also worrying about how to pay the medical bills.

9/4/20: Maintenance Herceptin #13 + Lupron: $15,322.48
9/24/20: Medical Oncologist Appointment: $260
9/24/20: Maintenance Herceptin #14: $14,856.32
9/29/20: Exemestane: $1,499.99
10/1/20: Port Removal Surgeon: $748
10/1/20: Port Removal Hospital: $2,616.67
10/2/20: Lupron + Flu Shot: $875.97
10/30/20: Lupron: $571.16
11/24/20: Echocardiogram Cardiologist: $243
11/24/20: Echocardiogram Hospital: $1,886
11/27/20: Lupron: $571.16
12/3/20: Cardio-Oncology Appointment: $288
12/3/20: Cardio-Oncology Hospital: $248

Total cost to date: $414,734.93
With insurance, cost to me: $8,254.63

12/3/20: Cardio-Oncology Appointment

Everything's fine!

The appointment started with a quick EKG. It took longer to attach the sensors to my legs, arms, and torso than it did to actually take the recording. 

I had already printed out my echocardiogram report from the online patient portal. The ejection fraction is now 57%, which is well within the normal range of 54-73%. My baseline was 63%, so I asked the doctor if my ejection fraction might continue to improve and return to baseline? She said maybe, and I got the impression that it really doesn't matter, since the number is already considered normal. Anyway, I won't be getting any more echocardiograms, so I'll never know!

The doctor did a brief physical exam, took a listen to my heart, and said everything sounded great.

I asked about my blood pressure, since my bottom number is sometimes in the 80s and 90s. She said to monitor it for a week or so, and ideally I should be calmly sitting down for 10 minutes before taking a measurement! If it's consistently above 90, then I should let my PCP know.

She said there's no reason to worry about any long-term side effects to Herceptin, so she can graduate me from cardio-oncology. Yay! That's one less thing to worry about. If I have any symptoms like heart palpitations, shortness of breath, or fluid retention in my legs, I can reach out to her again.

11/24/20: Echocardiogram

Today's echocardiogram was ordered by my cardio-oncologist. I think the idea is to make sure my heart function has returned to normal after finishing Herceptin. 

Instead of going to my usual hospital, this echocardiogram was at the cardio-oncologist's office, at a different suburban satellite location. I don't know if it was the doctor's orders or the technician I had, but the echocardiogram took longer than usual, like 20-25 minutes instead of 10-15 minutes. It seemed like the technician was taking more measurements than at previous appointments. 

Anyway, it was uneventful. I have the follow-up appointment to discuss the results with the cardio-oncologist next week. 

9/2/20: I Checked My Insurance Claims Online

Our insurance coverage year starts in July, so we paid the full deductible on the first appointment in the new coverage year. After that, insurance paid all claims in full. I will never change my mind: everybody deserves to receive medical treatment free from financial worry and stress. 

5/20/20: Medical Oncologist Appointment: $368

7/2/20: Maintenance Herceptin #10: $15,122.75, I paid $4,000

7/9/20: Physical Therapy Virtual Appointment #20: $372

7/10/20: Lupron: $571.16
7/24/20: Maintenance Herceptin #11 (Including Medical Oncology NP Appointment): $16,468.75
7/27/20: Echocardiogram Cardiologist: $243

7/27/20: Echocardiogram Hospital: $1,133

7/30/20: Physical Therapy Appointment #21: $348 

8/6/20: Cardio-Oncology Appointment: $288

8/6/20: Cardio-Oncology Hospital: $227

8/7/20: Lupron: $571.16

8/14/20: Maintenance Herceptin #12: $14,750.21

Total cost to date: $374,748.18
With insurance, cost to me: $8,254.63

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. 

7/31/20: I Called the Cancer Center

At my cousin's suggestion, I called the Cancer Center to ask about my echocardiogram results. I'm definitely a bit worried, and it would bring peace of mind just to know what's in store, instead of wondering about it until my next appointment.

My medical oncologist doesn't work on Fridays, and my oncology NP happened to leave early today. So a different oncology NP called me back. She said usually 55% is the threshold for worrying about the ejection fraction; 53% isn't too much below 55%, but my ejection fraction has trended downward since my first echocardiogram. Sometimes they will refer the patient to a cardio-oncologist, and sometimes the Herceptin treatment will be disrupted. She said she doesn't know how my medical oncologist will want to proceed, so she'll put in a message to her, and someone will get back to me.

7/30/20: Echocardiogram Results

At today's physical therapy appointment, my therapist asked how my latest echocardiogram looked. I realized I had forgotten to look for my results online, and now I wish I had known the results at the appointment, so I could have asked my therapist what they mean.

I got the echocardiogram report from the online patient portal. My ejection fraction is now 53%. The report says a number between 54% and 73% is normal. 

I made a post asking for information in a couple of the Facebook support groups. Most everyone said 50% was the cut-off for the normal range, which is also what I found online. Several women said that when their ejection fraction got too low (in some cases as soon as they hit 50%, but one woman went as low as 41%), they were referred to a cardiologist, who prescribed medication. Some had to take a break from Herceptin until their ejection fraction improved. Others were able to continue Herceptin treatment while taking the medication. It sounds like the ejection fraction can eventually return to normal, though it might take a few months or a year, and then the medication can be stopped. 

One person said that the 50% number wasn't as important as the change from baseline, and that a difference of 10% was the threshold for concern. By that measure, I'm right at the borderline, since my first echocardiogram had an ejection fraction of 63%. Another person said her medical oncologist said a difference of up to 15% was tolerable.

The idea of stopping treatment is discouraging because I'd like to know that I've done everything I can to reduce my chances of recurrence. Interestingly, someone pointed me to a recent study that showed that 6 months of Herceptin is pretty much just as effective as 1 year of Herceptin. It's definitely reassuring. I've already had 10 months of treatment, so I think I won't feel too bad if I have to stop early.

A couple people suggested that addressing a low ejection fraction would be more urgent if I was symptomatic. It hadn't even occcured to me that I might have related symptoms. I found a list of symptoms online, and I don't think I have any of them, except maybe possible swelling in my feet, but that could also be from hormone therapy.

I want to discuss my echocardiogram results with my medical oncologist, to see if my ejection fraction will affect my Herceptin treatment, but my next appointment isn't until my last scheduled infusion! I have a Lupron appointment next week, though, so I'll ask my nurse about it. Part of me figures, if there's anything to worry about, surely my oncologist, or the NP, would give me a call.

7/27/20: Echocardiogram

The coronavirus protocols were less stringent than last time. I was able to go directly to the cardiology department, and the waiting room was open, though some of the chairs were taped off to ensure proper distancing while seated. 

It was a quick visit, the procedure itself taking only 10-15 minutes. 

5/21/20: I Checked My Insurance Claims Online

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

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.

4/6/20: Echocardiogram

Even though there are no official instructions from my state to wear masks outside the home, local towns and cities are recommending cloth masks. I have a couple that my mom brought back from Taiwan many years ago. The one I wore was a bit small, so it hurt my ears after a while.

When I arrived for my appointment, the building that houses the cardiology department was locked. A sign said to check in at the main building.

A nurse was stationed at a table placed just inside the front doors. I was asked the 3 screening questions and given a sticker to wear that identified me as having been screened. I sat in the waiting area until a security guard came to escort me to the cardiology department. 

The sonographer who performed the echocardiogram was not the same person who did my previous echos. He was more casual and chatty. He mentioned that for patients who have already had the coronavirus, they are requiring 2 negative tests before they can be seen. 

I was at the hospital for maybe 30 minutes, but the echocardiogram appointment itself took only about 15 minutes.

4/1/20: Phone Calls

The OB/GYN office called me to re-schedule next week's appointment. Because of the coronavirus, they asked me to schedule 2-3 months out, so the new appointment is in July.

I also called the hospital to see about my echocardiogram appointment next week. They said as of now the appointment is on, but they will call me if something changes.

My state's stay-at-home advisory was extended to May, so I expect all my appointments through the end of April (including the ones that were re-scheduled from March) will be re-scheduled again.

3/17/20: The Hospital Called Me to Re-Schedule My Echocardiogram

The scheduler asked if I would mind pushing my echocardiogram appointment 2 weeks out. I said that's totally fine, but I also asked if it would make sense to keep it sooner rather than later, since the coronavirus situation is only expected to get worse in the next couple weeks. She said, well, that's not actually an option, they are simply re-scheduling everyone. Sounds like they are in full preparedness mode.

My letter of authorization from the insurance company says I need to schedule the procedure within a one-month time frame. The scheduler assured me that it's easy for them to re-request authorization if they need to push my appointment out past the existing window.  

1/16/20: I Checked My Insurance Claims Online

Since we've already met our deductible, the "You Pay" amounts for these claims were all $0. The numbers listed below are the "Claim Total" amounts.

11/22/19: Medical Oncologist Appointment: $258.00
12/5/19: Medical Oncologist Appointment: $258.00
12/5/19: Medical Oncologist Hospital: $84.00
12/6/19: Chemotherapy Cycle #10 (Including Blood Work, Physical Therapy Appointment #9): $7,473.23
12/11/19: Echocardiogram Cardiologist: $240.00
12/11/19: Echocardiogram Hospital: $1,133.00

12/13/19: Chemotherapy Cycle #11 (Including Blood Work, Physical Therapy Appointment #10): $7,535.23

12/20/19: Chemotherapy Cycle #12 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #11): $7,640.23
12/26/19: Maintenance Herceptin #1 (Including Blood Work, Lupron, Physical Therapy Appointment #12): $16,323.62
1/2/20: Physical Therapy Appointment #13: $393.00

Total cost to date: $186,964.59

With insurance, cost to me: $4,229.43

12/13/19: Chemo Cycle #11 of 12 + Social Worker Visit + Echocardiogram Report + (Almost 4 Months Post-DMX) Physical Therapy Appointment #10

Warning: This post contains a photo of my unhealed port incision.

I drove myself again today. It was totally fine.

At my 10:00 port access appointment, the port nurse wasn't happy with the look of my port incision. It's not infected, which is always the primary concern, but it's definitely not closed. I don't know if it looks "better" than before, but maybe the stitches stimulated the skin layer to regenerate and start filling in the gap? I hope so. I just want it to heal, even if it heals into an ugly scar.

11 weeks after port placement.
1 week after stitches removed.
Entire incision not closed.
Using A&D ointment lightly.

I stopped by the restroom on my way to the infusion room, and by the time I saw my infusion nurse, the port nurse had already called her to talk about my port incision. It's not really in the wheelhouse of either nurse to know how best to handle an unhealed surgical incision, so my infusion nurse said she'd take another photo and send it to the doctor who stitched me up. She said at this point, maybe it would be helpful to have more information, like whether or not the scar could be "cleaned up" during the port removal surgery, and whether or not a plastic surgeon should be involved.

She confirmed that next week will be my last chemo session. Yay! I'm due for a Lupron shot the week after on December 27. She said I'll have one more weekly Herceptin at that same appointment, then starting from that date, I'll have maintenance Herceptin every 3 weeks. I'm still not clear on exactly how many maintenance Herceptin treatments I'll get, but she did say I'll get them until October 2020, one year from when I started Herceptin.

My nurse said I should expect the chemo side effects to linger for a few weeks, but once they go away, getting the maintenance Herceptin should be a lot easier. Almost all the side effects I've had are related to the chemo drug, Taxol. With only Herceptin, the only real concern is my heart function, which is monitored periodically with echocardiograms.

I mentioned that the neuropathy was more frequent than usual this week, but my infusion nurse said it wasn't a problem unless the neuropathy interferes with my ability to do regular activities, like walk or write. I didn't realize neuropathy could be so severe; it was a reminder of how lucky I am to have only mild neuropathy that's not disruptive to my quality of life. All I get is tingly toes that last a short while.

I started my pre-meds around 10:40. At 11:00 I started Herceptin, and my social worker came in shortly after for a brief visit.

We debriefed on Thanksgiving, and I told her how I've decided that for me personally, I would much prefer that other people say something rather than nothing. I get that some people don't say anything out of fear of saying something wrong, but ignoring the elephant in the room feels awkward to me, and honestly, it makes me feel like they don't care. In some cases, other people might not know if I'm the type of person who is okay with talking about cancer, but I would think that at least the people who know about this public blog would see it as an indicator that yes, I am comfortable talking about it. My social worker suggested I come up with a few lines I could say in case the other person doesn't say anything; something to acknowledge the elephant, show that it's okay to mention it, and either invite them to ask me questions if I feel like talking about it, or change the subject if I don't.

Preferably, though, it would be nice if the "burden" wasn't on me to break the ice. My infusion nurse actually said something before similar to what my social worker suggested, though she was addressing the question of what other people might say. She said ideally, in just a few lines, other people could acknowledge the cancer in some way (e.g., refer to the diagnosis, recent surgery, or current treatment), show love (e.g., give a hug, or say something supportive), and then move on (e.g., make a light comment that could potentially re-direct the conversation, which gives me an opening if I don't want to talk about it). I like those guidelines. I like that in both cases, whether it's me or the other person speaking, the elephant is acknowledged, and then you can play it by ear regarding whether or not to talk more about the cancer.

My social worker pointed out that the bottom line is that it's complicated. I get that. A person having cancer complicates relationships, and it's new territory for most people. I have to say, it makes sense that some of my most comforting and supportive interactions have come from people who have already had some kind of personal experience with cancer.

Before she left, my social worker asked if I've given any thought to requesting support from the Ellie Fund, since all requests need to go through her. I actually think I'm doing alright, but still, it's nice to know that kind of support is out there.

I ate my lunch during the Taxol, which started around 11:40. An hour later, my infusion nurse de-accessed my port, took a photo of my port incision, and gave me some printouts.

I am just realizing now that I forgot to post about my first echocardiogram report. I accessed it via the online patient portal a few days after the procedure. When my infusion nurse mentioned that my latest echo looked good, I asked for a copy of the report. I don't understand any of it, but I know the most important thing is the "ejection fraction". The report states that "normal" range is 54-73%. In my first echo, my ejection fraction was 63%. In my second echo, the ejection fraction was 61%. From what I've gathered in Facebook support groups, it's normal for the percentage to go down while getting Herceptin, just not too much. I assume I'm doing fine since my percentage only went down a little, and it's still in normal range.

My infusion nurse also gave me my blood work results. Today's report probably had the most measurements out of range, but almost all were only very, very slightly out of range. TotProt (Total Protein), Globulin, and Monos (Monocyte) were all very slightly low, similar to numbers in Cycle #7. Baso (Basophil) was slightly high, as it was in Cycle #6. And Im Gran (Immature Granulyte) continues to be a little high, as it has been in every cycle since Cycle #6. The only new one was RDWSD (Red blood cell Distribution Width Standard Deviation). This value is a measurement of red blood cell size, and my number was very slightly out of range on the high side. Apparently, the RDWSD value is typically compared to the MCV (Mean Corpuscular Volume), the average size of red blood cells, which was normal for me. High RDWSD and normal MCV could be an early sign of some kind of vitamin B12, folic acid, or iron deficiency. I'm figuring all these slightly out of range numbers might have something to do with the effects of chemo being cumulative. Good thing I'm almost finished.

I left the infusion room at 12:45, but I still had a physical therapy appointment at 1:00, which took place in the physical therapist's exam room. She worked on my cording while we chatted about the upcoming holidays. My right arm really feels a lot better after the cording massage!

I left the Cancer Center at 1:30, so altogether this visit was 3.5 hours.

12/11/19: Echocardiogram

This appointment went just like the first one, I even had the same technician. It took about 20 minutes.

I appreciated that when the technician was trying to get pictures of my heart from the side, by positioning the transducer between two ribs, she said it was a little tricky because I'm "skinny"! I just liked being thought of as skinny, since I've been feeling especially flabby.