4/30/20: Still Managing Numb and Tingly Fingers

The baseline condition of my hands is that they are always very mildy numb and tingly. They always feel worse in the morning, more puffy and tight, and I have to open and close my fingers repeatedly to loosen them up. I also usually wake up with my arms feeling tight on the insides of my elbows (specifically, in that space between my elbow and biceps), and in my underarms, so I have to extend my arms and straighten them out, which also helps my fingers to feel better. My hands are especially sensitive to temperature now, and holding a cold drink or a hot dish makes my fingers feel super tingly.

Yesterday and today, I had a couple worrisome mornings. I woke up suddenly and my hands were VERY numb and tingly, to the point that it felt like something was squeezing some of my fingers so tightly that it hurt, like my circulation was being cut off. Yesterday it was both hands, but today it was just my right hand. Yesterday it was my middle, ring, and pinky fingers that felt squeezed. Today it was my thumb, pointer, and middle fingers. Both mornings this happened before I was ready to get up, so I was still so tired, I didn't want to get out of bed, but I sat upright and extended my arms and moved my fingers, trying to get my hands back to baseline. 

The feeling gradually wore off in about half an hour to an hour. Getting out of bed, walking around, and doing nerve glides definitely helped, but it was so hard to bring myself to do those things when I felt so tired, not ready to start the day.

Of course I've been brainstorming possible explanations for this new problem. I'm still walking, drinking lots of water, and doing nerve glides, but I will admit that I have recently been slacking off on my physical therapy stretches. I need to make a point to get back to doing them every day. 

Something similar, but to a much lesser extent, actually happened a couple weeks ago; I woke up one day with my right hand feeling noticeably more numb and tingly than baseline. That time, I wore my wrist brace the next night, and it helped. So, I'll try that again, too.

For the record, my hands continue to be puffy, my left more so than my right. It's hard to know for sure, but I still figure the root problem is water retention from Lupron (not exemestane, because all of this started before I started taking exemestane) causing my nerves to be pinched. I'm a little worried that it might be lymphedema, but I remember my physical therapist saying that lymphedema tends to get worse as the day goes on, and my symptoms always get better over the course of each day. I will definitely ask my physical therapist about it at my next appointment, once I can get that scheduled.

4/17/20: Lupron

For today's appointment, I was in and out in 15 minutes.

As instructed last week, I called my infusion nurse from my car in the parking garage. I left a message saying I had arrived. She called back within a few minutes to let me know that she put in the pharmacy order for the Lupron, so it should be ready by the time I checked in and got to the infusion room. I guess the purpose of me calling was to reduce the time I needed to be in the Cancer Center.

When I saw that there was a person checking in ahead of me, I decided to put on my cloth mask while waiting in line. During the check-in, I was given a surgical mask to wear instead. My identification and allergy wristbands were again trimmed and attached to the back of a sticker, which I stuck to the front of my shirt, identifying me as having been screeened.

Up in the infusion room, the medical assistant took my vitals, then directed me to a bay. Almost immediately the "new" nurse who has been working with my regular infusion nurse came in. She gave me the shot, and I dare say it was the most gentle and painless injection I've had so far!

4/14/20: My Physical Therapy Appointment was Cancelled

The Cancer Center called to cancel my physical therapy appointment. They said they are cancelling all appointments until further notice, no re-scheduling until everything calms down and they are actually seeing patients again.

Thankfully, I think I'm in a relatively good place, so I don't mind the cancellation. The cording has not returned, and my range of motion is good. I admit, I have not been doing my strengthening exercises as instructed, so I do need to work on that.

I definitely want to re-schedule when it's possible, because my physical therapist has been a huge help in giving me ways to manage the numbness and tingling in my fingers. Also, I still have some puffiness in my hands, and it's reassuring having my physical therapist monitor me for lymphedema.

4/10/20: Maintenance Herceptin #6 + Social Worker Phone Call

Yesterday I received a phone call confirming my appointments today. They pre-screened me with the usual 3 questions, but also said I would be asked the same questions again when checking in. I asked if I should arrive wearing my own cloth mask (wondering if this might help the Cancer Center preserve PPE); she said I can if I want, but I would still be given a surgical mask to wear when I arrive.

I figured there's no need for a cloth mask just for the drive in, so I checked in without a mask and immediately put on the surgical mask they gave me.

The person checking me in recognized me and didn't ask for my name. She said my appointment with the port nurse, who accesses my port, was cancelled. I wondered if maybe the appointment was cancelled in an effort to minimize person-to-person interactions, since the infusion nurse can access my port, too.

Usually I am given a wristband with my name, birth date, and medical record number, and also a second wristband to show that I have an allergy (to chlorhexidine). Today, instead of putting the wristbands on my wrist, the wristbands were trimmed (to cut the straps off) and attached to hang off the sticker that identifies me as having been screened. They were visible on the front of my shirt, presumably to eliminate unnecessary touching.

I went directly to the second floor, but instead of going straight into the infusion room, I waited outside in the waiting area until I was called.

Around 9:30, the medical assistant called me in. I know the staff is under more stress these days, so I brought them a big bag of Lindt truffles. (I did the same at my last visit, too.)

She took my vitals and brought me to a bay. I see the same medical assistant at almost every visit, and I appreciate how she always helps me settle in with a pillow and a warmed blanket. With the check-in person knowing my name, and the medical assistant giving attention to my preferences, coming to the Cancer Center actually makes me feel seen and cared for.

My infusion nurse came in around 9:45. We chatted first about the struggles of adapting to this crazy new life, both at work for her and also at home, juggling at-home child care and online schooling.

She asked about the tingling in my hands. I told her how having mild numbness and tingling in my fingers is like my new baseline. I noticed this week that if I'm not diligent about staying active (stretching, walking, and doing nerve glides), the numbness and tingling (and tightness and puffiness) can still get worse, but not as bad as before. Currently, even when it's "bad", I don't feel any weakness or pain, so that's still an improvement.

About 10:00, my infusion nurse asked if it would be okay to allow a new nurse to access my port. I met this new nurse last time; she's new to the Cancer Center but is an experienced nurse coming from an inpatient position. She needed to be "checked off" for doing a port access. So that's why my port nurse appointment was cancelled! It was fine with me, and also kind of interesting to hear them talk through the process.

My infusion nurse also wanted to talk about my Lupron injections. Looking for ways to reduce patient visits, she asked me if I would be comfortable giving myself the monthly shots at home! She made it clear I can say no, that it's just part of her job to ask. She said she's not even sure if my insurance would allow it; asking the patient whether or not to pursue this option was just the first step. She said a pharmacy would deliver the medication to my home, and she would train me today on how to do it. The injection is usually given in my butt, but if I did it myself, I would use my thigh. She said, too, that Ken could be the one to give the shot, if that was a possibility.

My initial reaction was to say no, but I felt I should give it a fair thought before responding. I asked what could possibly go wrong? She said if I make a mistake, it's possible the medication might not get fully injected, which means it wouldn't be as effective. Or, if I don't clean the injection site properly, it could get infected. I definitely don't want to do anything that might increase my chances of needing even more medical intervention. And I didn't say this at the time, but in retrospect, I also don't want to take on anything that would add to my anxiety, and I think trying to self-inject my Lupron would produce more anxiety than going out for an in-person visit.

I asked if I could get the 3-month dose of Lupron, which I've read about. She basically said I wasn't prescribed the 3-month dose, which tends to lose efficacy towards the end of the 3 months. I don't know under what circumstances the 3-month dose is acceptable (maybe it's more commonly used for other purposes other than breast cancer), but in my Facebook support groups, monthly doses do seem to be the norm.

My infusion nurse has always been very observant, and she said that since I showed hesitation, I shouldn't do it at home. I was relieved, and she was completely understanding, adding that giving herself an injection wouldn't be easy even for her. The other nurse who accessed my port agreed. I don't know if they meant it, but I appreciated the reassurance. Anyway, they are still trying to reduce person-to-person interactions, so she instructed me to call her from my car when I arrive next week; she said she could check me in herself, bypassing the reception desk.

I started the Herceptin at 10:45.

Around 11:00, my social worker called my cell phone. She said she is not visiting patients in person (to maintain social distancing), but wanted to check in to see how I'm doing during this whole pandemic. It was hard to know where to start. I said I feel lucky in a lot of ways, compared to what I know others are going through. Everyone in my household is able to stay home and isolate. My kids are old enough to be self-sufficient with their school work, but not too old that they are rebellious and giving us a hard time about not seeing friends. In light of all the lonely deaths due to coronavirus, I feel especially fortunate that my family was at my mom's side when she died, and that our friends and relatives were able to gather for her funeral; we had all the traditional means of comfort and mourning that are now being denied to victims of covid-19 and their families. Also, I'm grateful that my dad's radiation just happened to end when the stay-at-home advisory started, a very lucky coincidence.

She said, "I hear that you are putting events into perspective, which is good, but that doesn't negate the fact that you are still in cancer treatment, and mourning the loss of your mother. Even though the world is going through a pandemic, you are also experiencing a personal crisis, and I give you permission to feel all the things you are entitled to feel." Those weren't her exact words, but pretty close. I teared up. I don't want to be all "woe is me", but I do still feel like I have a lot going on. As if a pandemic isn't overwhelming enough, I'm worried about my dad being alone, I am anxious about the dual risk of coronavirus and cancer, and I'm still trying to adjust to my new body, including my flat chest (still numb in some places, swollen in others, and also a challenge now that layers aren't as easy to pull off in warm weather), my hair (that is growing back but looks awful so I'm still wearing hats), and the medication side effects that just make me feel old and not well (tingling in my fingers, tightness in my legs and hips any time I stand up, and overall tiredness).

My social worker also pointed out that because the pandemic is rightfully at the forefront of everyone's minds, I'm likely not getting the kind of support that I might otherwise get from others, so it's all the more important that I work through my thoughts and feelings, and preferably not by myself. She says talking things through really does help to lighten the burden a person feels because it changes the way our brain processes the events. And I have to say, hanging up the phone after our conversation, I did feel a huge sense of relief. I'm so glad she called today, just talking to her for that short amount of time made me feel so much better!! She reminded me again of the breast cancer support group, which is now meeting virtually. I'm such an introvert, I've never been a fan of group settings, but I'll think about checking it out.

I got off the phone with my social worker just before my Herceptin finished at 11:15. The new nurse de-accessed port, and I left by 11:30. Altogether, today's visit was about 2 hours.

4/8/20: Cancer and the Coronavirus

At first I wasn't sure if having a history of cancer counted as a pre-existing condition that would put me in a high-risk category if I contracted the SARS-CoV-2 virus. Being NED means there is no evidence that I currently have cancer, and since my blood work already returned to normal after finishing chemo, I figured I'm not immunocompromised. 

This article, "Cancer Patients in SARS-CoV-2 Infection: A Nationwide Analysis in China," describes a study that looked at coronavirus patients with cancer in China. Compared to patients without cancer, "patients with cancer were observed to have a higher risk of severe events." Okay, that makes sense. But what about patients who have a history of cancer?

The article goes on to say that "patients who underwent chemotherapy or surgery in the past month had a numerically higher risk (three [75%] of four patients) of clinically severe events than did those not receiving chemotherapy or surgery." Okay, that makes sense, too. It can take several weeks for your body to recover after chemo or surgery. For me, both surgery and chemo were completed well over a month ago, so does that mean I'm in the clear?

Well, apparently, "cancer history represented the highest risk for severe events." Great.

The article did not differentiate between different types of cancer, but I wonder if some cancers, like lung cancer, might have a greater risk for complications than other cancers.

Anyway, going with what is known, I've been isolating pretty strictly since my town closed schools on March 13. Most days I do go outside to do yard work, or to take a walk in a secluded area behind my neighborhood. The only other time I leave the house is for treatment. Ken does the grocery shopping, and we take all the recommended precautions when he returns.

Whenever I have an appointment, I feel anxious. I know I am increasing my chances of getting the virus every time I go out, but I don't want to miss any treatments, either. Delaying or missing treatments could increase my chances of recurrence. It's a trade-off between risks related to the coronavirus and risks related to cancer recurrence. 

I'm thankful that I've already had my surgery and chemo. The timing of my diagnosis, and subsequent treatment, was pure luck. From what I'm seeing in Facebook support groups, some women are having their treatments delayed or discontinued, either because the risk of getting the coronavirus while on chemo was deemed too high, or because the treatment or procedure was deemed "elective", or at least "non-urgent". In this article, a man describes how the coronavirus is delaying his cancer surgery, a clear detriment to his prognosis. 

Today I read this article, "Between Scylla and Charybdis — Oncologic Decision Making in the Time of Covid-19." I admit, I had to look up the reference. Wikipedia tells me that "between Scylla and Charybdis" means to choose between the lesser of two evils. (Scylla and Charybdis were monsters on either side of narrow waters travelled by Odysseus in Homer's Odyssey.) In the article, the oncologist writes, "To survive SARS-CoV-2 only to then succumb to an undertreated cancer would be a Pyrrhic victory. The acuteness of infection and the chronicity of malignancy are the Scylla and Charybdis between which oncologists and their patients must now chart a very cautious course indeed."

My next treatment is this Friday. I sort of hold my breath in between appointments, wondering if the Cancer Center will call to delay or cancel. 

I know everyone is struggling with something during this pandemic. This is an unprecedented time with new and unfamiliar challenges for everyone. All the quiet time at home is finally giving me the space to process my cancer, the surgery, my mom's passing, and my dad's cancer. And that's on top of the pervasiveness of the fear and anxiety surrounding the coronavirus itself, the heartbreaking sadness and loneliness of people dying and mourning alone, the combined worry and gratitude for the front line workers, the feelings of distress for the many vulnerable groups who are most affected, and the unrelenting anger and frustration at the current administration for handling the pandemic response in the worst way possible. 

So, it's one day at a time. We're going through a collective trauma, but each person is experiencing it and handling things in their own way. I think the best advice I've heard is for everyone to be more compassionate and more gentle, with themselves and with each other. 

4/6/20: The Breast Center Called Me to Re-Schedule My Appointment

My "6-month" follow-up with my Breast Center NP was supposed to be in March, but had been re-scheduled to late April.

My state's stay-at-home advisory now extends through April, so I figured this appointment would get moved again. My new appointment is in July.

After the phone call, I got another email saying all appointments through April 25 are being re-scheduled.

4/6/20: I Picked Up a Prescription

I drove straight from my echocardiogram to the pharmacy.

I had intended to use the pharmacy's drive-thru, but according to my online account, the prescription wasn't ready yet, even though it was past the scheduled pick-up time. I didn't want to sit and wait for who knows how long, and I didn't want to go home just to have to come back out again (I planned to shower and change as soon as I got home), so I decided to put the mask on and go inside.

A new plexiglass divider had been installed at the pick-up counter. An extra table was also placed in front of the counter, providing for extra distance. 

Again, thankfully, there was no co-pay for my 3-month supply of generic exemestane. The retail price was $1,499.99.

Total cost to date: $242,893.1‬0

With insurance, cost to me: $4,254.63

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.