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.
