3/26/20: I Got an Email about Re-Scheduling Appointments

Because of the coronavirus, my hospital is re-scheduling or offering virtual visits for all non-urgent appointments through April 11.

In that time, I have one appointment for an echocardiogram, and another with my OB/GYN. I expect the echocardiogram will be delayed again. The OB/GYN appointment is a follow-up to discuss any gynecological side effects from hormone therapy. I'd be fine with a virtual visit by phone, if that's an option. The email said the provider's office will call me, so I guess I'll just sit tight and wait for some phone calls.

I also have an appointment for a targeted therapy infusion. I assume scheduled treatment counts as essential, but I know some women in Facebook support groups are having even their treatments cancelled, so I'll have to wait and see what the Cancer Center decides.

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

3/20/20: Maintenance Herceptin #5 + Lupron

Everyone at the Cancer Center was wearing a mask, both patients and staff. Checking in, I was given a mask and asked 3 screening questions. I got a large sticker to place on my hoodie to show that I had been screened.

I had a 9:00 appointment to get my port accessed and blood drawn.

Regarding the coronavirus pandemic, my port nurse said that disinfectant wipes and hand sanitizers are being stolen from exam rooms. She didn't say if people were taking them for use in other parts of the hospital, or if individuals are taking them home, but she said she is locking hers up at night, since she needs them for use with her patients.

Upstairs, a sign in front of the infusion room said to check in at the information desk. There was no one at the desk, and since I had already checked in at the main reception desk downstairs, I figured I was all set and went in as usual. Turns out, with the increased security for the coronavirus, they want patients to wait outside until called. Yesterday they had someone standing guard, but no one was there this morning.

Anyway, the medical assistant took my vitals, then got me settled in a bay.

My infusion nurse came in around 9:45. She asked me how my hands were feeling, and I told her I've basically gotten used to the mild puffiness, numbness, and tingling that persists in my fingers. She looked at my hands and said she could see they are just a bit swollen, especially in the fingers. I mentioned that I sometimes feel shooting nerve sensations (no pain) when doing something that requires fine motor skills, like sewing a button.

We waited for the pharmacy to deliver the Herceptin, which got started around 10:15.

About the same time, my physical therapist checked in with me. I had cancelled today's appointment, so I really appreciated that she stopped by. She asked about my hands, and I told her the same things I told my infusion nurse. She asked if my arms felt heavy. (I think this is a symptom of lymphedema.) I said they don't, and the only time my arms really get involved is when I'm bending my elbows, like when I'm holding a phone to my ear, and then my whole hand goes numb, but feels better after I extend my arms again. She said it sounds like the residual swelling just continues to pinch some nerves. She reminded me that it's important to keep up with my exercises and walking. She also said that even if we can't have in-person appointments, she's available for questions, so if anything changes, or if I feel like I need new exercises, I can give her a call.

I got my Lupron shot, and my nurse handed me my visit summary printout. My port nurse had told me that the only blood test ordered was for vitamin D, but the results weren't back yet. My infusion nurse confirmed that I should keep taking the 2000 IU of vitamin D prescribed by my old medical oncologist.

I washed my hands in the restroom just outside the infusion room. I left the Cancer Center around 11:00, so today's visit was a little over 2 hours.

After I got home, I saw I had a voice mail message from my social worker. She was just checking in to see how I'm doing, especially in light of the pandemic, and wanted to make sure I know that I can still call her if I need anything. I appreciated the reminder.

I also checked my blood work online, and my vitamin D is still low, only slightly higher than when it was first checked.

3/19/20: The Cancer Center Called Me

They called to pre-screen me for tomorrow's appointment. They asked me:

1. Do I have a fever or any respiratory symptoms? (I don't.)
2. In the last 14 days, have I travelled to China, Italy, Iran, or basically anywhere? (I haven't.)
3. As far as I know, have I been in contact with anyone known or suspected to have the coronavirus? (No.)

She said I will get a mask when I check in. They are no longer providing food during infusions, and I need to come alone, no visitors. 

It's unfortunate that I'm still in treatment, but still, it's a relief that I'm not in chemo, and I don't have to go in weekly.

3/19/20: I Called the Cancer Center

With the nation urging the cancellation of all elective procedures, I wasn't sure about my scheduled treatment tomorrow for Herceptin and Lupron.

I called, and they confirmed that I should still come in. If I have a fever, respiratory symptoms, or have travelled to any of the infected regions, I should wear a mask.

I feel anxious about leaving the house, but I will do my best to not touch anything, not touch my face, wash my hands frequently, and stay 6 feet away from other people - except my nurses, I guess. Coming home, I'll plan to take off clothing in the mud room, and immediately hit the shower.

So surreal, what our daily lives have come to look like.

Incredibly relieved that my dad's daily radiation treatments happened to end last Friday, so he can just stay home.

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.  

3/16/20: I Re-Scheduled Some Appointments

During this COVID-19 pandemic, my state has closed all schools and banned all on-premise dining for restaurants and bars. There is a major push for social distancing, and as an introvert and homebody, I am happy to comply.

This upcoming Thursday, I was scheduled for a 6-month follow-up appointment with my NP in the Breast Center. I was planning on calling them to re-schedule, but even before I had a chance, they called me. They asked me to move my appointment out by at least 4 weeks, which is fine with me. Now it's in late April. 

When this appointment was first scheduled, I felt uneasy because 6 months seemed like a long time to wait to have a medical professional evaluate my post-surgery recovery. But now that it's been 6 months, and I've had my physical therapy appointments in the meantime, I think I'm in a stable place. I have no pressing questions or concerns. 

I decided, too, to re-schedule Friday's physical therapy appointment, which I also moved to late April. When this appointment was first scheduled, I was nervous about not seeing my physical therapist for a whole month. But now that the time has passed, I'm okay. I am relieved that my cording has continued to improve, so seeing my physical therapist doesn't feel necessary. Anyway, the point of the appointment was really just to check in, and to give me some new strengthening exercises. I'm comfortable just continuing with my walking, deep breathing, and stretching exercises for now. 

I also have 2 appointments that I did not cancel because they are time-sensitive. On Thursday I'm scheduled for an echocardiogram. I thought a lot about whether or not to re-schedule this appointment. I decided to keep it because the point of the echocardiogram is to make sure my heart is functioning properly while on Herceptin, and the results determine whether or not I should continue with Herceptin treatments. I am also keeping an appointment on Friday for both an Herceptin infusion and a Lupron shot, since those treatments should stay on schedule to be most effective. 

It does make me wonder under what circumstances the hospital might call to re-schedule those appointments... Interestingly, I did get a recorded message from the hospital, regarding my echocardiogram appointment, saying that no visitors other than patients themselves are allowed in unless medically necessary.  

Meanwhile, I've been doing a lot of research to try to figure out if I am in a "high-risk" category for COVID-19. I am NED, so there is no known cancer in me at this time. None of my medications are immunosuppressants. My immune system was compromised during chemo, but I finished that almost 3 months ago, and my blood work has already returned to normal. I did have a total of 6 lymph nodes removed, but that seems to be more of a concern regarding bacterial infections if the skin is broken on the side of the body from which lymph nodes were removed. In the Facebook support groups, though, a number of people insist that anyone with any history of cancer is immunocompromised... This article says people with a history of cancer "probably" do not have an increased risk, however, this study that analyzed COVID-19 patients in China says that patients with a history of cancer do have an increased risk. The study does not distinguish between different kinds of cancer, though, and I'm sure that must be factor. Still, I figure I should adopt an attitude of extreme caution, just in case.

3/9/20: Bone Density Test

My medical oncologist ordered a baseline bone density test because both Lupron and exemestane are reducing my estrogen levels - actually, together, the goal is to eliminate estrogen completely - and that puts me at risk for osteoporosis.

Because of the coronavirus, when I checked in, I got asked whether or not I am having respiratory symptoms and also whether or not I've travelled anywhere within the last 14 days. These questions actually show an evolution from a few weeks ago, when I was asked only whether or not I'd travelled to China in the last 14 days.

Anyway, I filled out a questionnaire about my bone health, and was instructed to change into a gown. I laid down on a table, and the imaging machine above me moved up and down my body making scans. The whole procedure was a lot shorter than I expected, I think it took like 10 minutes.

When I got home, I went for a nice long walk with my neighbor. By the time I got back, my doctor's office had already called with the results. I have osteopenia! I got 3 T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.7
• Left proximal femur: -1.2

Only the -1.2 number falls within the osteopenia range, but the nurse who called me said it's enough to consider my overall results to be osteopenia. She said my doctor is prescribing 1200 mg of calcium daily and 1000 IU of vitamin D daily.

My old oncologist already had me taking 2000 IU of vitamin D, so I figure I'll stick with that. The calcium supplement I've been taking is 600 mg, so I'll just take 2 of those from now on.

I'm already trying to walk at least 30 minutes a day, 5 days a week, for breast cancer recurrence prevention. Apparently, walking counts as a weight-bearing exercise that is beneficial to bones, so that makes me doubly motivated to keep it up. 

3/6/20: (2.5 Months Post-Chemo) My Hair is Growing Back

I'm still wearing a headcover any time I leave the house. I'm optimistic about not feeling the need to wear one by the time the weather really starts to warm up, which is good because my preferred headcover has been nice and warm for these past winter months, but not very practical for spring or summer.

With long hair, I never worried about going to a good stylist. I occasionally tried out a new place here or there, just for fun, but generally speaking, Supercuts was good enough for me. With super short hair, though, I'm wondering if I should look for a "real" salon...

Anyway, just for you loyal blog readers, here's a peek at my hair growing back.

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.