6/15/26: Medical Oncology Appointment

Today I had my annual oncology follow-up. My appointments are supposed to alternate between the medical oncologist and medical oncology NP, but for some reason, I was scheduled with the NP for 3 years in a row, so I hadn't seen my oncologist since 2022!

I first got a blood draw for a full panel of tests. I was a little surprised because I couldn't even remember the last time I had my blood drawn for an oncology appointment. At home later, I checked my records, and it was back in 2022 when I last saw my oncologist! Anyway, today I had to go to the phlebotomy department in the main part of the hospital; since my last blood draw, the small dedicated phlebotomy lab in the cancer center is now only used for limited purposes.

The very nice medical assistant who took my vitals gave me another surprise when she said my height is 5' 5". I thought I was 5' 5.5"! Again, I checked my records at home, and last year I was 5' 5.25". At the time, I probably chalked it up to a slight mismeasurement, but I can't ignore two years of declining measurements in a row. Yikes. Surely bone loss is to blame; more on that later.

The medical assistant also told me the doctor was running behind schedule, and indeed by the time I was shown to an exam room, it was 50 minutes past my scheduled appointment time. Then I had to wait at least another 15 minutes for my oncologist. But I didn't mind, I didn't have any other place to be. The way I see it, my appointments are relatively routine now, and other cancer patients probably need her attention a lot more than I do. Plus, I like the idea of a doctor spending as much time as necessary with a patient. I used the time to start this blog post, check email, etc.

While waiting in the exam room, with the door open, my medical oncology NP walked by and popped in to say hello. It was very quick but also very friendly, just enough time for her to ask about my kids and for me to tell her about my youngest graduating high school and heading off to college. When I finally saw my doctor, she was so pleasant and kind and spent maybe a good 30 minutes with me. I didn't feel rushed at all.

I was surprised - again! - when the doctor asked about my eye appointments; I didn't realize she would have access to the fact that I recently got an eye exam and was referred to an ophthalmologist for an "enlarged optic nerve". I super appreciate when all my doctors in the same giant hospital network can see each other's notes, but I know the ophthalmologist is not in that network. Maybe my oncologist just saw the referral from my PCP, who is in the same network? Who knows. However she got to see it, I do like the convenience and comprehensiveness of all my doctors being able to see my medical activity across specialties.

We talked about my various symptoms and side effects from menopause and hormone therapy, e.g., joint stiffness, neuropathy in fingers and toes, hot flashes (much reduced from initial frequency), vaginal dryness, and increased anxiety. I told her about the new neuropathy in my left toe, though at this point, I've pretty much just accepted that all the discomforts are part and parcel of having had cancer.   

My oncologist confirmed that it'd be difficult to separate which symptoms are from menopause, and which might be side effects of taking anastrozole, the difference being that side effects could potentially improve when I stop hormone therapy. (I've got 4 more years to go, for a total of 10 years of hormone therapy.) Anastrozole is an aromatase inhibitor, and she said there is one more medication in the same family that I could try, called letrozole. I previously took exemestane, and got switched to anastrozole to see if I'd have fewer side effects on it, which I did. My doctor said I could try switching to letrozole, if I want, just to see if side effects are even better, but I guess I sort of feel like I'm in a steady routine now, so I'm loath to rock the boat by switching medications. It's good to know it's an option though. 

As usual, I had a physical exam as well, which went fine.  

Finally, I am due for a bone density test (because aromatase inhibitors cause bone loss), so will call tomorrow to schedule that. My oncologist said to try to get an appointment before my next PCP appointment, so my PCP can see the results and talk with me about whether or not to start treating my osteopenia (which hopefully has not progressed to osteoporosis).

5/20/23: Cost Update

I actually haven't checked my insurance claims online lately, I guess because my appointments are fewer and less frequent these days. But here are some old costs that I hadn't posted yet.

Our health insurance coverage year starts on July 1, re-setting the deductible, so all these appointments starting last summer required out-of-pocket payments. We have a high deductible health plan, and since my cancer-related appointments have been tapering off, I wonder if we'll even meet the deductible this year. 

I thought it was particularly ridiculous that there was a hospital facility charge for the phone appointment with my hepatologist, but at least I didn't have to actually pay anything.

7/12/22: GYN Surgeon Appointment: $192.00 (I paid $140.02)
8/5/22: Anastrozole (generic): $545.99 (No cost to me)
8/16/22: Blood Work for Hepatology Appointment: $113.00 (I paid $64.28)
8/24/22: Hepatologist Phone Appointment: $260.00 (I paid $260.00)
8/24/22: Hepatologist Phone Hospital: $105.00 (No cost to me)
11/3/22: Anastrozole (generic): $545.99 (No cost to me)
11/10/22: Medical Oncologist Appointment: $326.00 (I paid $316.30)
11/10/22: Medical Oncologist Hospital + EKG: $889.00 (I paid $450.73)
11/10/22: EKG Technician: $27.00 (I paid $20.25)
1/9/23: BreastCare NP Appointment: $221.00 (I paid $190.72)

Total cost to date: $464,025.21
With insurance, cost to me: $11,649.99

11/10/22: Medical Oncologist Appointment

My oncology appointments are getting more spread out, which is a good thing; fewer problems means fewer appointments. My last appointment was exactly 5 months ago, and my next appointment will be in about 7 months. After that, my oncologist said I can move to yearly appointments, ideally timed in coordination with my yearly breast NP appointments so that I alternate between the Breast Center and oncology every 6 months. My oncology appointments will continue to be scheduled with either my oncologist or oncology NP. I am acutely aware of how I used to feel when going 3 months in between appointments felt "too long", and it's interesting how I'm clearly in a new place now, able to welcome the longer time in between appointments.

But I'm getting ahead of myself.

I arrived 15 minutes early, guessing that I would need time for a blood draw, which I did.

Checking in at the registration desk, I felt a weird sense of sadness when I looked around and recognized nobody. I had gotten so used to seeing familiar faces that seeing no familiar faces at all made me feel kind of lonely. What's more, as I was getting my blood drawn, my old port nurse was in the room, too, but did not recognize me. Granted, I was masked, and back when I used to see her, I always wore a hat to hide my hair loss. Still, I did not say anything to her, for fear that she would still not recognize me even if I reminded her.

Speaking of masks, I'm very glad that medical facilities in my area still require masks, which I know is not the case across the country. Still, I will never understand why, 2 1/2 years into this COVID-19 pandemic, medical facilities continue to provide only surgical masks to staff and patients, knowing that they do not provide sufficient protection against airborne viruses. I was impressed that many, if not most, of the patients I saw were wearing high-quality N95 / KN95 / KF94 masks, though there was one guy who did not wear a mask at all. I think he was the escort for a patient who was wearing a mask, and I don't understand why he was not asked to wear a mask, or denied entry for not wearing a mask.

Anyway, during my blood draw, the phlebotomist had a difficult time filling the tubes. By now I well know the drill of having to drink extra water starting the night before a blood draw, but I just plumb forgot! I felt pretty sheepish about making the phlebotomist's job harder. 

As usual, I got my vitals taken, and was relieved that my blood pressure was fine, since it's given me a little trouble in the past.

I was glad to see my oncologist. I know she's not a friend, but she was a familiar face and has always been supportive. 

I asked if I would be getting an EKG today, and she seemed surprised at the question. I have learned to not hold it against my doctors when they don't know my whole medical file; I figure, they have so many patients, and only a few minutes to review each file before an appointment, so it's okay if they don't remember everything, as long as they think things through after I bring something up. In this case, I reminded her that the cardiologist who did my pre-surgery clearance said I should get an EKG every 6-12 months while on hormone therapy. Once she confirmed that note in my medical file, she went ahead and arranged for an EKG to be done at the end of the appointment.  

We then discussed my concerns. First, I said I'm still feeling the same very mild neuropathy in the first three fingers of both hands, presumably a remnant of chemo. At this point, I mostly ignore it, but it's there.

Then, I told her about various menopause-related side effects, presumably from taking anastrozole and having had my ovaries out. Stiffness in my fingers, hot flashes, and vaginal dryness are not new, and my doctor reminded me that if my side effects start to interfere with my daily living, I don't have to suffer, there are options, including trying another aromatase inhibitor called letrozole. 

I did tell her about a new concern, which is that my thumbs sometimes hurt now. They are stiff like the other fingers, but additionally, whenever I try to grasp or squeeze something (like a bottle), the thumbs hurt and feel weak. Sometimes it's mild and is just an inconvenience, but other times it's more severe, like I end up using both hands to hold a bottle to make sure I don't drop it. My doctor said arthralgia (pain in joints and muscles) is common with anastrozole, but there's always a chance it could be arthritis. Again, it came down to how bothersome the symptom is: if it's very problematic, I could get imaging to rule out or diagnosis arthritis, and/or get physical therapy to help manage the pain, and/or try letrozole and see if side effects improve. Otherwise, I can just monitor it and live with it. At this point, it's not so bad, so I figure I'll just put up with it.

Lastly, I mentioned the mild numbness and tingling in my right foot and leg that has been happening on and off since July. Sometimes it's just in the last 2 toes of my right foot, and it feels similar to the neuropathy in my first 3 fingers. Other times the numbness and tingling extend up my leg to some degree. Because the sensations are always concentrated in the same area, essentially in a line down the outside of my leg, my doctor thinks it's nerve-related, especially since I had a lot of similar nerve-related problems in the past. She suggested I add regular stretching to my daily routine, and see if that helps. 

After all the talking, I changed into a gown (top only) for a physical exam. Everything was fine!  

The doctor then stepped out and a medical assistant came in to do my EKG. She put one lead on each of my calves, one on each of my forearms, and 6 on my torso. She printed out the EKG on the spot and left it on the computer table for my doctor. I took a look and jotted down my QT/QTc numbers: 442/438 ms. Normal QT is 350-450 ms, and normal QTc is 360-460 ms, so it looks like I'm back in the normal range! 

When my oncologist returned to wrap up the appointment, she gave me the business card of the new social worker in the Cancer Center, in case I ever want to talk with her. Apparently, the amazing social worker who helped me through chemo retired.

Back home, I checked my lab results, and my LFTs and estradiol are both within the expected range! Yay! Maybe things are really finally settling down. 

4/26/22: Medical Oncology NP Phone Appointment - I Need an Oophorectomy

Today's phone appointment was a follow-up to see how I'm doing on the anastrozole. I had printed out my list of side effects, but I ended up not mentioning the coughing and increased mucus. It's allergy season, after all, and it might not really be a side effect. 

Mostly, the bottom line is, I have a lot of side effects, but it's all manageable, and none of it limits my activities. My joint stiffness and hot flashes are worse than on Tamoxifen, but better than on exemestane. The dizziness is weird, but I haven't felt it in a couple weeks now. My NP said it's common for lots of side effects to develop around 2-8 weeks after starting a new medication, and then start to settle down after about 3 months, as the body adjusts. She also brought up vaginal dryness, which I hadn't really noticed except maybe some itching, which she said was actually a common symptom; she said she'd send me a list of products that can help. 

I thought that was it, the start of a potential stretch of stable, uneventful cancer care, but then she said, "Did you see your latest estradiol number?"

Ugh. I've been so focused on my LFTs that I totally forgot to check the estradiol from my last blood draw!

Turns out, my estradiol was 15. To be considered post-menopausal, which I need to be in order to take anastrozole, the estradiol should be <5. 

My NP said my medical oncologist already conferred with other oncology colleagues, and they agreed this is unusual. Their only guess is that the Lupron must not be working, but nobody knows why not. The point of the Lupron is to eliminate estrogen production by suppressing the ovaries, and since Lupron isn't doing it well enough, the consensus was to recommend I remove my ovaries. My NP will do some coordinating behind the scenes, and then she's supposed to call me back with next steps.

Incidentally, I mentioned that I never did hear from my hepatologist after seeing my FibroScan results online. I said I'm not really worried because I have an appointment scheduled this summer, but she said she'd check in with him to see if there's anything I should know before then. I appreciate her helping me out, even though hepatology isn't her department. 

To help me wrap my own head around everything, here's the whole hormone therapy / oophorectomy history:

• Fall 2019: My genetic testing showed I have 2 VUSes: one in BRCA2, which is linked to ovarian cancer, and one in PALB2, which may be linked to ovarian cancer. My oncologist did not recommend removing ovaries to prevent ovarian cancer, but my OB/GYN thought it was a viable option for multiple reasons: 1) to prevent ovarian cancer, 2) as birth control, and 3) to eliminate the need for monthly Lupron shots. At this time, an oophorectomy didn't seem necessary, so I didn't pursue it.
  
  
• 2020: Because my cancer was estrogen receptor positive, I needed hormone therapy to eliminate estrogen in my body. I got monthly Lupron shots (to suppress estrogen production in my ovaries) and was prescribed exemestane (a daily pill for post-menopausal women to block estrogen production in other parts of the body). The Lupron put me in a chemically-induced menopause, which allowed me to take exemestane.
  
  
• 2021: A couple blood tests showed my estradiol to be too high; my oncologist thought maybe the Lupron wasn't working as effectively since my ovaries started working again (after having temporarily stopped working during chemo). Since I couldn't be considered post-menopausal anymore, I switched from exemestane to Tamoxifen (a daily pill for pre-menopausal women to block the effects of estrogen on breast cancer cells), while still continuing with Lupron. 
  
  
• 2022: After a year of Tamoxifen, I developed non-alcoholic fatty liver disease. My oncologist took me off Tamoxifen and switched me to anastrozole (the same type of pill as exemestane, just a different drug). Since anastrozole can only be taken post-menopause, my estradiol would be monitored to make sure the Lupron is keeping it <5. My last blood test showed estradiol was 15, so the Lupron is not totally working, which means I can't be considered post-menopausal. The only pre-menopausal hormone therapy pill is Tamoxifen, which we already ruled out as an option. Now, having pretty much exhausted all other options, the only way to sufficiently eliminate estrogen production is to have an oophorectomy. 

7/15/21: I Checked My Insurance Claims Online

Finally my appointments seem to be slowing down. As usual, these costs are added into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year.

3/18/21: Medical Oncology NP Appointment: $481
3/18/21: Medical Oncology NP Hospital + Lupron: $676.16
4/12/21: Tamoxifen (generic): $228.99
4/16/21: Lupron: $571.16
5/14/21: Lupron: $571.16
6/10/21: Medical Oncologist Appointment: $326
6/10/21: Medical Oncologist Hospital (Including Blood Work) + Lupron: $1,541.16
7/8/21: Tamoxifen (generic): $228.99

Total cost to date: $427,196.61
With insurance, cost to me: $8,254.63

6/10/21: Lupron + Medical Oncologist Appointment

I expected to have blood drawn today to check the estradiol number, but there wasn't an order for it when I checked in. As it turned out, my oncologist decided during my appointment that we should check the estradiol again, so I got my blood drawn after seeing the doctor, before getting my Lupron shot. The results should show up on the online patient portal later. 

During my appointment, I told my oncologist about one new concern. About a month ago, I noticed that a spot on the right side of my torso felt bruised, but when I looked, there was no bruise. Poking around, I could feel a round bump that felt tender when touched. Was it a bone? An organ? Was it something to worry about? I laid down on the examing table, and the doctor spent a good amount of time feeling around. She said she definitely could feel the bump, but she wasn't sure what it is! 

On one hand, it's disconcerting when the doctor doesn't know something. On the other hand, I do appreciate her honesty. She said it might be a "floating rib" - one of the lower couple ribs that don't connect to anything in front - and then she Googled it right there in the office. She suggested we keep an eye on it, and if it gets worse or continues to be worrisome, maybe she'd order a CAT scan. But in the meantime, I should try not to poke around at it, which might be aggravating it unnecessarily.

I told her that I am aware that maybe my worrying has a psychological component. I've been hypervigilant about my body for a couple years now, first in finding the breast cancer myself, then in trying to keep tabs on the many side effects of treatment. After all this time, it's like I'm looking for things to feel wrong. Plus, the typical aging process and Lupron-induced menopause are confounding factors, reminding me that I shouldn't even expect my body now to feel like it did pre-cancer. Anyway, my oncologist said all that sounded perfectly normal, and I appreciated that she didn't make me feel like a hypochondriac.

Anyway, I also reported that I've been getting hot flashes again. I hadn't been getting them for a while, but they're back, and I wonder if the hot weather is a trigger. Interestingly, I think eating sugar is a trigger; at least, I seem to get hot flashes any time I eat the fudge I got for Mother's Day. 

For the record, the first three fingers on both hands still feel very, very mildly numb and tingly. I never notice it anymore unless I tap my thumb and fingers together, so it's just something I've accepted as permanent. My joints still feel stiff sometimes, especially in the mornings, but it doesn't interfere with my daily activities, so it's also not something I worry about anymore.

She said since there aren't any treatment-related issues, we can stretch my next appointment out to 6 months instead of 3. I remember when 3 months between appointments made me feel a little nervous, but now I think I'm okay with it. I'm ready to put more distance between me and cancer treatment. 

Finally, I got my Lupron shot. The nurse was one I've had before, but the shot felt like it was in the wrong place! The location was much higher than where it's usually given, closer to my hip than actually in my butt. I didn't say anything, but as soon as I got home, I Googled, "What if a shot is given in the wrong place?" I found this Quora entry, with one answer that includes a helpful image showing the safest place in the butt for a shot. Apparently, the place I got the shot today looks to be more squarely in the safe area, all the other shots were probably on the low side!

3/19/21: I Checked My Insurance Claims Online

As usual, I'm adding these costs into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year. 

12/23/20: Lupron + Medical Oncology NP Appointment + Blood Work: $1,959.16
12/28/20: GYN Appointment: $324
12/28/20: GYN Hospital: $248.60
1/2/21: Exemestane (generic): $1,499.99
1/7/21: Breast Center NP Appointment: $221
1/11/21: Pelvic Ultrasound Radiologist: $227
1/11/21: Pelvic Ultrasound Hospital: $857
1/11/21: Blood Work: $764
1/21/21: Medical Oncologist Phone Appointment: $260
1/21/21: Medical Oncologist Hospital: $105
1/22/21: Lupron: $571.16
1/22/21: Tamoxifen (generic): $228.99
2/19/21: Lupron: $571.16

Total cost to date: $422,571.99
With insurance, cost to me: $8,254.63

1/21/21: Medical Oncologist Phone Appointment

One of the nurses I talked to last week warned me that my medical oncologist might run behind schedule. She called 30 minutes late today, but I didn't mind. I appreciate it when I am not rushed through an appointment, so I just imagined that she was talking with other patients with lots of questions and issues, like me. 

She said that FSH and LH aren't really reliable measures of menopause while on Lupron, so she mainly looks only at the estradiol. She confirmed that she does look for a very low number, like the "<5" value I had last July, before the spotting started. My two recent blood tests, however, had my estradiol at 31 and 10, which suggests that my ovaries are still functioning.   

So why would the Lupron just suddenly stop working? She thinks it's not that the Lupron stopped working, but that my ovaries starting working again. Typically, chemotherapy puts the ovaries into a chemically-induced menopause - sometimes called "chemopause" - which is sometimes permanent, sometimes temporary. I finished chemo over a year ago, and my doctor figures my ovaries are only now "waking up". The Lupron is probably as effective as it's always been, but previously it was doing a good job suppressing chemo-suppressed ovaries, and now it's doing an okay job suppressing functioning ovaries. I asked if having partially suppressed ovaries is normal? She said it's "a little weird." 

I am already on the highest monthly dose of Lupron. Apparently it's not unheard of to increase the dose even more by giving the shot every 3 weeks instead of every 4 weeks, but she said her colleagues didn't recommend it, since some patients get by on just half the dose I'm getting. There is a 3-month dose, which is 3 times the monthly dose, but it could produce inconsistent results, with the higher concentration of medication at the beginning of the 3 months leading to more side effects, and the wearing off of the medication towards the end of the 3 months leading to estrogen production.  

So, she suggested I stay on the same dose of Lupron, and switch from exemestane to Tamoxifen. This is the #2 scenario of Ovarian Suppression + Tamoxifen that I described in this post. I have to say, I am so glad I have that post to refer back to! I was feeling uneasy about switching to Tamoxifen, because it feels like I'm "settling" for a less aggressive treatment, and I want to feel like I am doing everything in my power to reduce the chances of a recurrence. That post reminded me that I've always been in an intermediate "grey area," not clearly high risk, but not clearly low risk either. The original decision to take exemestane instead of Tamoxifen was an effort to err on the side of caution. I was prepared at the time to switch to Tamoxifen if necessary, only it turns out the precipitating factor isn't the exemestane being unbearable, but rather the Lupron being ineffective. 

I was surprised that my doctor did not even bring up oophorectomy as an option. Since that was the path I was expecting, I asked her why not. Basically, she appears to have a philosophy of being conservative when it comes to surgery. Like, removing body parts is pretty drastic, so don't do it unless you really have to. This is definitely Ken's perspective, and I lean in that direction, too.

I told her my concern about "settling" for a less aggressive treatment, since my current treatment of Ovarian Suppression (via Lupron) + Aromatase Inhibitor (via exemestane) is supposed to be more effective. Shouldn't I consider switching from Lupron to ovary removal for the ovarian suppression, and sticking with exemestane? My oncologist basically answered the question by assuring me that Lupron + Tamoxifen is still an aggressive course of treatment. She didn't say it explicitly, but I got the feeling she thinks, at least for me, the risks of ovary removal are not worth the benefits of exemestane. 

I'm a bit conflicted. On the one hand, I know I am "settling" for a less aggressive treatment, but on the other hand, I'm relieved I don't have to get an oophorectomy. I was already wary of the procedure because of articles like this that lay out the risks. It helps to remind myself that I can always opt for an oophorectomy later, if I change my mind. Also, it helps to remember that I am following the recommendation of my oncologist; I would have to go against my oncologist to get the oophorectomy, and that would feel weird, too, because I do think she's a good doctor. (I think if I really felt strongly about it, I'd be motivated to get a second opinion, but I'm not.) 

So just when I thought I could get used to a stable set of side effects, I'll be starting all over again with a new medication. I think I can handle stuff like hot flashes and fatigue, but I really, really, really don't want to have any hair thinning! I'm just starting to feel optimistic about my hair growing back, but already it feels thinner than it was before chemo, and I'll be super sad if it gets even thinner. I'll also need to keep an eye out for more serious side effects, like symptoms of a blood clot or endometrial cancer. 

On the plus side, Tamoxifen is supposed to have a positive effect in bones after menopause, so it may counteract the bone loss from Lupron. Also, it can lower cholesterol levels, which is convenient since I now have high cholesterol.

1/15/21: The Cancer Center Called Me

Actually, two people called. 

First, a scheduler called. She said she spoke with my oncology NP, who requested that I be scheduled for a televisit with my medical oncologist. She said they are trying to minimize in-person interactions, so it'll be a phone call, and she made the appointment for next week.

I figured this means there isn't an easy answer, or an automatic next step. As I was wondering what options my doctor might suggest, the phone rang again. 

This time it was a nurse. She, too, said that she had spoken with my oncology NP. But compared to the scheduler, she was much more explanatory. She was like, "I understand you've been having some bleeding, and you're waiting to hear from your doctor..." She said my oncologist wanted to discuss my case with some colleagues in the main hospital in the city before meeting with me. I super appreciated this extra bit of information. It actually builds my confidence knowing that my doctor is seeking out other opinions. (My first oncologist also discussed my case with colleagues, and I appreciated it then, too.) I told her a scheduler had already called, and I already have a phone appointment. Since the scheduler actually set the date, I assume it leaves enough time for the doctor to gather whatever other information she needs. The nurse apologized for calling again when I already had an appointment, but I thanked her for giving me new information. 

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

What to Expect from Chemotherapy

I first drafted this post when I started chemo, and I meant to finish it just after finishing chemo, but it fell by the wayside. By now, I think I've forgotten some useful things I might have said if I had posted it earlier, but here goes.

These are my thoughts on what to expect if you're getting chemotherapy. Of course, experiences and treatments vary. I got 12 weekly infusions of a "low dose" of Taxol, plus Herceptin because I was HER2-positive. After that, I got a higher dose of maintenance Herceptin every 3 weeks for the remainder of a year. 

I think I was relatively lucky in terms of side effects, and I definitely got off easy in terms of not experiencing any nausea at all.

Understand Your Regimen and Schedule

Chemotherapy was recommended at my first meeting with my medical oncologist, and things moved quickly from there. Within days my husband and I had a "chemo teach" appointment with an oncology nurse who explained the process and answered all our questions. She provided complete information on my treatment schedule, all the drugs I would be getting (including pre-medications), expected side effects, and the prescriptions I would have to help manage side effects. This meeting was critical in setting my expectations for chemotherapy. She emphasized that my regimen was tailored to me, and every person experiences side effects differently, so I shouldn't compare my experience with that of others.

Two days after that meeting, I got my port installed. The aftermath of this procedure was actually more painful than I anticipated, but I felt better in about a week. 

The day after port placement, I got an echocardiogram because Herceptin can weaken the heart's pumping action. This echocardiogram would be my baseline, and my heart would be monitored by an echocardiogram every 3 months while on Herceptin. Getting the echocardiogram just one day after port placement, and 4 weeks after my double mastectomy surgery, I really couldn't lie on my side without pain, but the technician was very kind and accommodating, and was able to get the images without too much discomfort.

Before I knew it, one week later I was getting my first chemotherapy infusion.

Day of Treatment Routine

On the day of treatment, I made sure to wear a top that would allow easy access to my port. I could wear any shirt that was kind of stretchy, or had a V-neck, as long as it could be easily pulled aside to expose the port. Also, I made sure it was short-sleeved, since my blood pressure was taken at every visit, too.

About an hour before my appointment time, I used the prescribed numbing cream (lidocaine-prilocaine) for my port. The cream was thinner than I expected, and I was instructed to cover the bump of the port, located under the incision scar, so that it looked "like toothpaste". Over the weeks I found that it worked best if I didn't try to conserve it; just slather it on.

Then I covered the area with a square of Glad Press 'n Seal, so that the cream would stay in place and not get on my clothes.

At my Cancer Center, I usually first met with a nurse who accessed my port. With the numbing cream, I didn't feel a thing when the needle went in. (Sometimes I felt just a tiny poke if I presumably didn't use enough cream.) She drew blood via the port for blood work, which was checked each treatment to make sure I would be able to receive chemotherapy that day. (My numbers stayed within acceptable range, so I never needed to miss a dose.)

About every 2 or 3 weeks, after my port was accessed, I had an appointment with my medical oncologist. This was my opportunity to discuss any side effects.

Once in the infusion room, a medical assistant took my vitals.

My infusion room was set up with "bays". Instead of one big room where patients sit amongst each other, each patient had their own space that could be curtained off for privacy. Each bay had one recliner for the patient, an extra chair or two for company, and a TV.

Once in my bay, I got settled in my recliner. I liked having a pillow and one of the heated blankets provided by the hospital. Then, I basically just sat for the next few hours. All the medications that were administered through the port were hung on an IV pole, so I could get up and walk to the bathroom, pushing the IV pole along with me.

Line Up Drivers As You Go / Invite a Friend

My hospital usually provided me with at least 2-3 appointments at a time, so I had time to plan ahead. I was advised to not drive myself to chemo, at least at the beginning. One of my pre-meds was Benadryl, which could make me drowsy, and another was Decadron, a steroid that could make me jittery! Who knows how I would end up reacting to all the meds. 

My husband was able to work out a schedule at work so that he could drive me to most of my first several treatments, but I was also fortunate enough to have a few friends who volunteered to drive me. I decided to take up each friend's offer only once, so as not to burden any one person too much. On average, my treatments lasted about 4 hours, not including driving time, which added another hour at least (round-trip), so it was a pretty big commitment. As it turned out, having friends with me during treatment was one of the best things I did for myself during chemo. Even though I was hooked up to an IV and getting pumped full of toxic drugs, it was downright fun to have a solid chunk of time to just sit and chat with a friend. 

Towards the end of my treatments, I got a pretty good feel for how the drugs affected me, and with my infusion nurse's blessing, I did a trial run of driving home, with someone in the passenger seat just in case. After that, I was able to drive myself to my last few appointments.

What to Bring

Here's a list of what I brought to my infusion treatments:

• Port Pillow for the Car - If needed to cushion the port from the seat belt. My port was placed on my left side, so the seat belt laid right over it if I was driving; I didn't need a port pillow if I sat in the passenger seat, with the seat belt over my right shoulder. My port pillow attached to the seat belt, but it didn't stay in place very well; I had to re-position it every now and then. Still, it worked well if I placed it basically on my shoulder, lifting the seat belt away from my body so it didn't touch the port at all.
  
  
• Water Bottle with Straw Lid - I was advised to drink 2-3 quarts of water a day. I really loved the convenience of the straw lid.
  
  
• Lip Balm - My written take-home instructions after chemo said to use lip balm to keep my lips moisturized. I didn't always use it, but brought it just in case.
  
  
• Hand Sanitizer - It's important to be diligent about preventing illness during chemo. I always ate at some point during my infusion, so having a handy bottle of hand sanitizer made it easy to clean my hands before eating, without having to get up and drag the IV pole into the restroom to wash my hands. 
  
  
• Treatment and Reaction Log - I wrote down the date and time of all medications, plus all side effects I experienced. Each week I kept my infusion nurse informed of my side effects, and how I was managing. She gave me specific advice and suggestions based on how I was doing each week.
  
  
• Things To Do - I always brought my cell phone (my hospital had free Wi-Fi) and a book. Sometimes the Benadryl (one of my pre-medications) would make me feel loopy or tired, so I'd just sit and rest, or nod off. If I had a friend with me, we easily passed the time talking. Sometimes my social worker or my physical therapist (for my double mastectomy recovery; I had cording in one arm) would meet with me during my infusion time. Consider bringing a laptop, an iPad, a knitting project, anything to help pass the time.
  
  
• Snacks and Lunch - My Cancer Center actually provided snacks, drinks, and a lunch for me and a friend. But I would still pack a few snacks just in case.
  
  

Side Effects

My oncologist called my regimen "chemo lite" because I only got one chemo drug, and my dose was apparently very low. There are a whole slew of possible side effects you might experience, from acne to blurry vision to skin rash. I think I got off pretty easy; I had a lot of side effects, but they were mostly just annoying.

The side effects people most worry about seem to be the following:

• Fatigue - After a few weeks, I was able to see a pattern in my weekly cycles. I got my infusions on Friday. That night, I was up late and got very little sleep (sometimes as little as 3 hours), thanks to the steroid pre-med. Saturdays and Sunday mornings I felt pretty normal, and then would start to feel tired come Sunday afternoon. I'd go to bed early, making up for lost sleep. I was always most tired on Mondays, and would continue to drag on Tuesdays. On Wednesdays I would feel increasingly better, on Thursdays I would feel practically normal again, and then the cycle started all over again on Friday. In some ways I preferred to just be a hermit during chemo, but I quickly learned that any activities were best limited to Saturdays, Sunday mornings, and Thursdays; Mondays and Tuesdays were totally out.
  
  
• Nausea - Dr. Susan Love's Breast Book recommends that if you experience nausea, take your prescribed medications as instructed, don't try to "tough out". Just in case, I bought saltines, ginger ale, and a friend gave me some ginger candies in preparation for chemo. I truly lucked out and didn't experience any nausea at all.
  
  
• Hair Loss - Dr. Love's book also says that hair loss is always traumatizing, but the people who do the best are the ones who prepare for it. I'm not sure about that; I tried to prepare, and was still very affected. I was not given a prescription for a wig because my oncology nurse didn't think I would need it; she said I should expect thinning, but not total hair loss. Still, I prepared for the worst and bought a couple headcovers just in case. I felt better just knowing I had a plan, especially since a lot of people say that hair loss happened very dramatically, essentially overnight.
  
  My experience was different; the thinning was gradual. There were a couple days after my 4th treatment when my hair fell out at an alarming rate. The amount of hair that fell out increased every week, and after the 6th treatment, I became self-conscious. After the 7th treatment, it was undeniably noticeable, and I started wearing a hat. After the 10th treatment, I couldn't even stand to look at my straggly hair in private, so I shaved it.
  
  In the months after chemo ended, my hair slowly grew back, but 5 months out I was still wearing hats in public. I was 8 1/2 months post-chemo when I finally felt comfortable going out without a hat.
  
  
• Weight Change - Some chemo patients lose weight because of the nausea. I didn't experience any nausea, but since my chemo regimen included a steroid, I was told to expect weight gain. My medical oncologist advised me to not worry about losing weight while on chemo; it was more important to eat well and maintain good nutrition. I ended up finishing chemo about 5 pounds heavier than when I started.
  
  
• Neuropathy - I had what seemed to be an unusual situation; at least, no one could give me any straight answers. I did not experience any neuropathy while receiving chemo, but about a month after stopping chemo, while still getting Herceptin, I started to get numbness and tingling in my hands. These symptoms came and went, and were sometimes debilitating and painful. My medical oncologist prescribed a "water pill" in case fluid retention was a factor, I started sleeping with wrist braces, and my physical therapist gave me new exercises. It was entirely unclear what was causing the symptoms. Was it delayed neuropathy from chemo? Or the Herceptin? I was also on Lupron and exemestane, so was it related to fluid retention or menopause? Who knows. After about 8 months, the symptoms gradually subsided. Now, about a year after finishing chemo, I still have a very mild tingling in the thumb, pointer, and middle fingers on both hands, but it's like I've gotten used to it, it's just there. Of course, I'm curious to see if it ever goes away!
  
  

Bottom Line

Every person is going to have a unique experience with chemo. Reading about my experience may or may not help someone else, who will probably experience completely different side effects. No matter what your particular experience is, I think the following advice is universal:

• Drink Lots of Water - Just keep a water bottle with you at all times and drink, drink, drink! Yes, you'll need to pee more often.
  
  
• Rest When You Need to Rest - It's okay to lie down in the middle of the day, or go to bed right after dinner.
  
  
• Stay Active - Take a walk to get fresh air, and also to get your blood and lymph circulating. I aimed for 30 minutes a day, 5 days a week, but even 10-15 minutes a day is good. If that feels like too much, my physical therapist recommended doing just a little something any time you get up from resting; swing your arms, or go up and down the stairs a few times.
  
  
• Look Forward - Sometimes chemo can feel like a slog, like it's just dragging on and on. Remember, you are prescribed a regimen, and there is an end in sight!! You can do it! 

9/24/20: Last Maintenance Herceptin! + Medical Oncologist Appointment

Today was my last infusion!!!!!

I am talking excitedly about it, but I'm not really sure how it feels yet. Maybe a little anticlimactic? Maybe a little scary? Or disorienting? It's a little weird to have a certain routine for a year, and then stop it suddenly. Of course, all the time not spent at the hospital is mine again, so that's good. 

Some hospitals do this thing where you ring a bell on your last day of treatment. It's a pretty big deal to a lot of people, and bell-ringing photos and videos regularly pop up in the Facebook support groups I'm in. But my Cancer Center doesn't have a bell, and I'm okay with that. I don't like being the center of attention, and I think I would feel self-conscious. But part of me does wonder if ringing the bell would provide a kind of closure, to help in the moving forward process. 

Anyway, I made chocolate lava cupcakes to celebrate. And Ken will be making paella for dinner. Yay!

Okay, back to my appointments today. The port nurse was behind schedule so the medical assistant took my vitals while I waited to get my port accessed. (For the last time!) 

My medical oncologist appointment went well, I think because I didn't have any open-ended concerns. 

I reported that my thumb and first 2 fingers on both hands are still numb and tingly, but now only very mildly so. Occasionally, for brief moments, my left hand even feels normal! Ever since my last appointment with my physical therapist, I've been doing only the prescribed stretches, and I haven't had any flare-ups of pain or discomfort. 

Thanks to the exemestane, the stiffness in my fingers has increased significantly so that I need to pump my fingers regularly throughout the day, to keep the rigidity at bay. It's a crazy feeling every morning, waking up to fingers that won't bend, and having to slowly work my fingers until the mobility returns. 

My left hand still looks puffy to me. Shoes that used to feel loose now feel snug, and my old watch is tight on my wrist. Even my face looks a little puffy to me, so either I've gained weight all around, or I'm retaining fluid. Either way, I think I can blame the Lupron.

Also because of the Lupron, I still get hot flashes, but not nearly as frequently as before. I used to get them at least several to many times a day, but now it's more like 0-2 times a day. I don't know if the side effect is wearing off, or if the cooler weather and colder household temperature are a factor. 

As suggested by my PCP, I asked about getting a colonoscopy before age 50. Contrary to what I found online, she said I don't have an increased risk of colon cancer due to breast cancer. Interestingly, however, several organizations, including the American Cancer Society, have recently changed their recommendations to say that even people with an average risk of colon cancer should get screened at age 45. Apparently there are many types of screening besides colonoscopy, but a colonoscopy is the most thorough option. I'm 44 now, and I'll be 45 by the next time I see my PCP, so I guess I'll go ahead and ask for some type of screening and see what my PCP suggests.

My oncologist was very nice and excitedly congratulated me on finishing Herceptin. No hugs because of COVID-19 but I think if we weren't in pandemic it would have been a hugging moment.

Up in the infusion room, I saw the "new" nurse that my regular nurse had trained. I had to wait a long time for the Herceptin to be delivered from the pharmacy, but that's not a complaint, I didn't mind just sitting and reading my book. 

When everything was finished, I wanted to say it felt great, but I didn't really feel much at the time. The nurse de-accessed my port, and then confirmed my upcoming appointments, including next week's Lupron shot. I guess that's part of why I don't really have a sense of completion; I'll be back again next week, and every 4 weeks after that, until menopause or until I opt for an oophorectomy, whichever comes first. 

9/2/20: I Guess I Don't Need Referrals Anymore?

According to my meticulously kept records, the referral for my medical oncologist expires today. I called my PCP's referral line to get a new referral for my new doctor. Surprisingly, they said a referral isn't needed because the specialist is in the same hospital network as my PCP. 

I asked if this is a new policy, and they said it's been in effect since at least February. I actually noticed that the referral I requested for my cardio-oncologist in August was not showing up in the online patient portal; they confirmed that they have a record of the request, and that a referral wasn't needed because the cardiologist is in the same hospital network. My online patient portal does show a new referral for my breast surgeon in June, and for my genetic counselor in July; they are both in the same hospital network, too, so now I don't understand why those went through, but I guess it doesn't matter, as long as my insurance covers the appointments.

7/17/20: I Checked My Insurance Claims Online

It's always a shock to see how much my cancer treatment costs. The tally has officially crossed $300,000. Thank goodness we have insurance. I supported universal healthcare even before being diagnosed, but now I'm all the more adamant about Medicare For All.

These are the claims our insurance company paid out. We already met our deductible for this coverage year, so there was no cost to us.

5/15/20: Lupron: $571.16
5/20/20: Maintenance Herceptin #8 (Including Blood Draw, Medical Oncologist Appointment): $15,226.64
6/12/20: Maintenance Herceptin #9 + Lupron: $15,692.80
6/25/20: NP Appointment: $260.00
7/1/20: Exemestane: $1,499.99

Total cost to date: $324,285.15
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.

3/20/20: I Checked My Insurance Claims Online

As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.

2/7/20: Maintenance Herceptin #3 (Including Blood Work, Physical Therapy #18): $16,472.32
2/10/20: Medical Oncologist Appointment: $260
2/10/20: Medical Oncologist Hospital: $84
2/21/20: Lupron (Including Physical Therapy #19): $978.16
2/28/20: Maintenance Herceptin #4 (Including Blood Work): $15,840.75
3/4/20: Medical Oncologist Appointment: $260
3/4/20: Medical Oncologist Hospital: $147
3/9/20: Bone Density Test Hospital: $674
3/9/20: Bone Density Test Radiologist: $44

Total cost to date: $241,393.11
With insurance, cost to me: $4,254.63

3/4/20: Medical Oncologist Appointment

Today I saw my new medical oncologist for the second time.

At this point, these are the lingering symptoms in my hands:

• When I wake up, my fingers feel tight. It can be difficult to make a fist. It feels better once I get moving, especially if I open and close my hands a few times.
• My thumb, pointer, and middle fingers feel mildly numb and tingly all the time. It feels worst in the mornings after waking up, and gets better during the day. Bending my elbow (like when talking on a phone) makes it worse. Also, my left hand feels worse than my right.
• My left hand is still puffy.  

My oncologist thinks my fingers feeling tight is not joint pain because they feel better after I open and close my hands. She said if it was joint pain, moving my fingers wouldn't help them to feel better. She thinks the tightness is due to fluid retention from Lupron or menopause. It could be that all my various symptoms of numbness and tingling and tightness and puffiness in my fingers are because of the swelling. 

During the physical exam, she also noted that my legs looked a bit swollen, too. I hadn't noticed it at all, but maybe that would explain why my legs have been feeling stiff.

I asked her how much I should be worrying about these symptoms. First, how do I know they are side effects, and not symptoms of some other unrelated condition? Second, if they are side effects, can they be alleviated, or do I just have to accept them as part of my "new normal".

By the way, I have really come to dislike that phrase, "new normal". I have heard it so much as a way to describe my post-cancer life. I just want to roll my eyes, even though I know it's an accurate phrasing. 

Anyway, she said I should just continue to bring up all my concerns at our appointments. Probably we start by assuming that reported symptoms are side effects, but if they can't be managed, I could be referred to some other specialist. And if they are side effects, it's mostly a matter of whether or not I can live with them. If they are disrupting my daily activities (like they were before), then maybe we should try some kind of intervention. But if it's just a little annoying (as they seem to be now), then maybe just let it be.

As it is, in my efforts to improve my symptoms, I am wearing the wrist braces to sleep, doing nerve glides and deep breathing, and trying to get in some daily walking. I'm still trying to drink 2-3 quarts a day. I think I will also Google other ideas to reduce fluid retention. I have the Lasix on hand, in case the swelling gets noticeably worse.

(Also, as a friend reminded me later, menopause and medication-related side effects can be temporary. Already my symptoms have improved a lot, so maybe if I'm patient, and keep up with the efforts listed above, my hands will eventually feel back to normal.)

She took a look at my port incision, and said it does look better than before. I told her about how my infusion nurse and I talked about getting the port out in April if it's still not healed. She said the last time she saw me, she thought the incision looked bad enough that she wanted to see the port taken out. But now, it looks good enough that she considers it closed, and she recommends I leave it alone. Boy, what a roller coaster this port has been! I definitely don't want to get it out early if I don't need to. I will ask my infusion nurse her opinion the next time I see her.

Regarding my blood work, she said my phos was back to normal. Apparently the lab orders didn't include vitamin D, so I'll have to wait until next time to get that checked.

She put in orders for me to get another echocardiogram (I need one every 3 months), and also a baseline bone density test, since osteoporosis is a possible side effect of exemestane.

Finally, she said my next appointment would typically be in about 3 months. Again, I had that "baby bird" feeling, and hesitated. She offered to reduce the timeframe to 9 weeks, but in the end I decided to stick with the 3 months. It's just reassuring to have these appointments, but if something comes up, I can always call for an appointment.

2/10/20: I Checked My Insurance Claims Online

As usual, these are the "Claim Total" amounts. We've already met our deductible for our coverage year, so the "You Pay" amounts were all $0.

12/20/19: Medical Oncologist Appointment: $258
1/10/20: Physical Therapy Appointment #14: $393
1/17/20: Maintenance Herceptin #2 (Including Blood Work, Medical Oncologist Hospital, Physical Therapy Appointment #15): $15,858.27
1/17/20: Medical Oncologist Appointment: $260
1/24/20: Lupron (Including Physical Therapy Appointment #16): $964.16
1/31/20: Physical Therapy Appointment #17: $393

Total cost to date: $206,632.88
With insurance, cost to me: $4,254.63

2/10/20: Medical Oncologist Appointment

I am so sad about my medical oncologist leaving! I got 3 big hugs today. And I teared up.

She told me which hospital she is going to. It's one of the best in the nation. She's going to be an associate director of an inpatient oncology program. She said she'll be working with a number of people who used to work at my Cancer Center. It sounds like there isn't much room for professional growth in my hospital; the other hospital is bigger and has a lot more money. 

She said she worked out a deal with the new hospital that would allow her to continue seeing her existing patients for outpatient care, if they want to stay with her. I love her, but I also love my infusion nurse, and physical therapist, and the providers in the Breast Center. I don't want to change everything in the middle of active treatment, and who knows, maybe I'll like my new oncologist just fine. 

My old oncologist seemed a little annoyed that the new oncologist scheduled my next appointment so far in the future (6 weeks from the last appointment, 3 weeks from now), particularly since I reported the symptoms in my hands at the last appointment. But in her defense, at the time, I had only experienced symptoms for I think 2 days, and I don't think I sounded too distressed about it yet.

Anyway. I gave her the whole history about my hands feeling puffy and tight and numb and tingly. I think the Lasix (furosemide) did work because my hands have continued to feel better since Saturday. I can hold things in the morning without my hands feeling weak or painful, and I haven't felt any numbness at all. I even skipped my morning routine today and yesterday because it didn't feel necessary. I still have a bit of tingling, but it is very mild, and it doesn't interfere with my ability to use my hands. I can tell the swelling itself is better, too, because I'd been wearing my watch wristband on a looser setting since all this started, and today I was able to switch it back to its original setting.

My doctor gave me a prescription for Lasix to take as needed. Apparently, Lasix makes it hard for the kidneys to absorb potassium, so she also gave me a prescription for a potassium supplement.

During my physical exam, she said my hands still look a little puffy, so I can go ahead and take another dose of Lasix to see if getting rid of even more excess fluid might help make the last of the tingling go away.

I told her my theory about my arms swelling because of overuse. She said that's possible, but also said the Lupron can cause fluid retention, which is what the new oncologist said, too.

She said my recent blood work showed that my vitamin D is low, so she gave me another prescription for a vitamin D3 supplement.

Also, my "phos" (phosphate) is a little high. She said she doesn't know why my phos would be high, but maybe taking the vitamin D will help that, too. If not, then I might need to see another specialist, like an endocrinologist. 

I remember that my phos was high back in December, but I didn't ask about it then. I guess I figured it might just be a fluke. A little bit of Googling tells me that a high phosphate level could be linked to osteoporosis, which I know is a risk when taking exemestane. I checked my labs online, though, and my phos has been high since before I started exemestane. (My phos went back to normal after that one time it was high in December, and then it was high again on 1/17/20 and 2/7/20.) Of course, osteoporosis is also a risk when taking Lupron.

I have to say, it's pretty depressing, having all these prescriptions, and worrying about osteoporosis, at age 43.

2/7/20: Maintenance Herceptin #3 + Physical Therapy Appointment #18

Today I arrived just in time for my 10:30 appointment. The medical assistant took my vitals, then helped me get settled into a bay.

My infusion nurse came in shortly after and asked about my legs and hands. I told her my legs were the lesser issue of the two; they still feel tired and stiff, maybe even more so since starting the exemestane, but mostly they just make me feel like an old person. I'm doing additional leg stretches every day, but still, any time I get up to stand, it feels like I've been in one position for hours, even if it's only been a few minutes. 

Then I told her all about my hands, my observations and how I've been managing the symptoms. She said it sounded like the symptoms were "taking over my life", by which she meant, the symptoms aren't getting worse, they may even be getting better, but only because I'm following all these rules all day (e.g., sleeping in specific positions, doing my morning routine, limiting my arm and hand use to ward off the tingling). She said it sounded exhausting, and not sustainable, and we need to try to figure out how to address the root problem.

Around this time, my nurse stepped out to take a call from my medical oncologist. Not the new one, but my original one, who is still working at the Cancer Center through February. When she came back, she said my doctor wants to see me for an appointment, to try to get a handle on what's going on with my hands. I scheduled it for next week.

My medical oncologist also suggested a one-time dose of Lasix (general name furosemide), a pill that would make me pee a lot, to help eliminate excess fluid. The idea is, if my symptoms are from nerves being crowded because of swelling, let's see if reducing the swelling can improve the symptoms. It might also help me to figure out if the discomfort I feel when making fists, and a new pain I sometimes have in the joints of my thumbs, are from swelling or joint pain (a side effect of exemestane). I took the pill this afternoon, so we'll see how things feel tomorrow morning.

My nurse accessed my port around 11:00. She said she would draw blood to see if anything in my blood work could help explain the swelling, or at least rule things out.

I told her that I've been thinking about getting my port out after all. We're thinking of taking a trip later this summer, between my treatments, and I'm uneasy about travelling too far from my Cancer Center with a sort of open wound that is at risk of infection. She agreed that it would make sense to get the port out, maybe in April, giving me a couple months to heal before the summer. She counted out the number of remaining treatments for which I would need to get an IV in my arm, and she even put a tourniquet on my left arm to count the accessible veins. She said it would be "totally doable". (The IV would be limited to just my left arm, where I had 1 lymph node removed, to minimize the risk of lymphedema on my right side, where I had 5 lymph nodes removed.)

I started the Herceptin at 11:30, and finished around 12:00.

I went in for my physical therapy appointment around 12:30. She re-measured my arms and found that they are less swollen than they were last time, but still swollen compared to my original measurements.

She had some ideas for helping to alleviate the swelling in my hands, like kinesio taping and compression sleeves (even if I don't technically have lymphedema). We decided to first see how the Lasix works out, and also see if my doctor has any other ideas, but it was reassuring to know that there are a number of options still in the wings if we need them.

We talked a bit about how I'm not even sure if some of the discomfort in my hands could be from joint pain, rather than swelling. She did say that joint pain, as a side effect of exemestane, does commonly appear in fingers and thumbs.

She worked on my cording, which continues to improve. She'll be away next week, and I hope my cording won't get worse without the weekly massage. I'll have to be sure to keep up my stretching!

Finally, she had me do some exercises to try to isolate the source of some of the hand tingling. It didn't seem like she could make any clear conclusions, but she did give me one more exercise to do to help relieve tension along my spine.

All told, I think I spent almost an hour in physical therapy today. I left the Cancer Center around 1:30, so it was a 3-hour visit.

Oh, I wanted to mention. During my infusion, my nurse brought me a free gift. Quite frequently, the Cancer Center receives donations to give to cancer patients. People can be so nice! Today's gift was a toiletry/cosmetic bag filled with little useful items.

My posts are usually so focused on my medical journey that I guess I'd forgotten to post about these little gifts. This is actually the third free gift I've gotten. The other two were both like free sample kits from Beautycounter.