Recently, in the middle of the current pandemic, I needed medical treatment on a weekend, of course! We’d avoided the need for some additional help as long as possible, availed ourselves of the telemedicine options, and did as much electronically as possible, but I just needed more. Even in this amazing age of technology, sometimes people need to touch other people.

Let me back up a bit. I forget sometimes that not everyone lives and breathes the medication I take every day. It’s up to nearly two handfuls of over 20 pills every day. Many look alike and they are all hard for me to swallow every single day. And some of them are so freaking big … I digress.

Almost two weeks ago, I added Metformin and Kisquali to my regimen. Looking through all of the side effucks of each med (p.s., also not a good idea because some of them are freaking terrifying), nausea and vomiting ranks in the top 5 or 10 of most of them. It didn’t take long for the nausea and vomiting to get out of control for me.

I wish I could pinpoint exactly why certain side effucks are mine no matter what. From the patterns so far, if headache or nausea are a possible side effuck, I have it, even if those are not the most prevalent and usually not in a mild way. Lucky me.

I made it through the weekend at home because my medical oncologist told me NOT to go to the emergency room, that that would not be a safe place for me. We were banking on this new thing my cancer center is doing — Express Symptom Management. This office is designed to work like a special urgent care within the cancer center that allows cancer patients to get the more specialized care we need. As I’ve discovered over and over, the typical urgent care is ill equipped to handle my needs and I usually totally freak out the very kind DOs who aren’t usually presented with the puzzle that is my medical care right now. As my medical oncologist says often (usually about insurance companies), “They have no idea what I do.”

And it’s true.

Anyway, if it had been a “normal” Monday, as in not during a pandemic, this model would have worked perfectly. But, because we are in the middle of a pandemic, I could not step foot into my cancer center because I’ve had a bit of a cough for a while. I’ve had a cold and all that’s left is a post-nasal drip, which causes me to cough a bit. Clearly the “tickle” is literally all that’s going on.

BUT, my cancer center decided on a bright line, objective rule that if there has been any cough at all, for any reason, that means absolutely do not enter, do not pass go, do not collect $200. Thanks COVID-19 and all the ridiculously selfish people who are acting like it’s business as usual for these impossibly draconian rules. While it was frustrating and disappointing, I do understand that those cancer patients with even worse immune systems than I need to be protected.

That left us with a conundrum. I knew at this point that I needed to go to a doctor, that we’d done all we could at home and I was just getting weaker and weaker. After a variety of phone calls and deliberations, some of which were nice, my dad took me to urgent care. We knew I could at least get fluids and bloodwork and diagnostic testing since the urgent care closest to our house is in the same building as a full diagnostic center.

At first, everything was smooth, I got bloodwork done, I had a chest X-ray (just in case), they tested me for the flu (still not sure why), they tested me for strep (really not sure on this one but I’ve had a sore throat, kinda), they tested me for COVID-19 (again, not sure why other than the little cough) and I got fluids. Then, as soon I was feeling a better and hoping to start talking about going home via text with my family, the doctor came in and started talking about ambulances.

The bottom line was that my potassium came back at 2 and that’s dangerously low. I understand a normal potassium level for an adult in my age group is between 3.5 and 5, and potassium is tricky in dosaging and absorption. BUT, urgent cares don’t stock it. And there again was the conundrum. We tried again to go to my cancer center, just one last ask with this simple request, just an infused bag of potassium. It was denied, again.

And I ended up in the emergency room.

It’s hard to explain the weirdness of policemen guarding the front door of a hospital. It’s hard to explain the otherworldliness of healthcare workers literally dressed in outfits that look like spacesuits and trying to decipher accents when you can’t see the person’s mouth. It’s hard to put into words what a waiting room looks like with social distancing and masks and terrified people. It’s hard to adequately describe the loneliness of sitting alone for hours because no visitors are allowed and the emergency room is full of people who may or may not have COVID-19 and so no one is allowed to leave their rooms.

Even though I’m suspected to have COVID-19 (I forgot to say that as soon as you get tested, it is assumed that you have it.), I did not detect any difference in my care. There were some misunderstandings because of the masks and all the extra layers of fabric and plastic and whatever some of the coverings are made from made for some funnyish moments of tangling with the cords and whatnot.

Have to find the amusement somewhere!

And then they decided to admit me. It was quite a conversation with my PCP and medical oncologist providing input. Some people were on screens, some on the phone and I was alone in my room watching/listening. I have to say it was the most bizarre discussion ever and I’ve had a few in the last three years. At the end of the day, the benefits of certainty and observation outweighed the risks. And then I discovered that I couldn’t go to the oncology floor, that I had to go to a tower that had been set aside for COVID-19 patients. We reached an acceptable agreement and then I settled in to wait.

The #1 activity as a patient in a hospital is waiting. So much waiting! All these different departments with different ideas and focuses. It’s Greek to me! Anyway, I only had to spend one night and then my numbers improved enough to be released. A relief to be home and with my family.

Look out for Part II of this riveting story on Friday! Stay safe AND STAY HOME!!

I’ve written before about Holding Space for others, i.e., sitting with someone in crisis rather than trying to fix it or give advice, and the Ring Theory of how people in the epicenter of a crisis should be supported and never dumped on. This post could be considered part II of either post or maybe part III in terms of this type of topic. Clearly there’s something about this topic that is gnawing at me, so I keep coming back to it.

I’d like to introduce a few other concepts that are part and parcel of my analysis …

The first is “ghosting”. This is a term that is often used to describe how healthy people, friends and family, often disappear once someone has been diagnosed with cancer or any other serious illness. The general thought is that sometimes an illness is too much for some people or maybe the relationship wasn’t as close as was thought by one or the other. Ghosting has been written about a lot in the cancer community and I’ve not met anyone who doesn’t have their own story, their own hurts, their own expectations that were let down when the person or people who they thought would be the ones to really show up, didn’t.

Sometimes this hurt is about friends, sometimes extended family and sometimes immediate family; spouses who can’t handle the struggles of illness, children who aren’t able to get past how a parent’s illness makes them feel to be able to help, siblings who have their own lives and concerns and can’t spare the emotional energy.

The definition of ghosting I found online was quite succinct: “the practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication.” I know this happens outside of cancer and it’s just as hurtful. All the platitudes in the world cannot address how devastating it is to be ghosted, to have those expectations dashed when you least expect it.

I keep using the word “expectations” and I think this term is also significant in the analysis. An expectation is defined as “a strong belief that something will happen or be the case in the future.” The idea of managing expectations often comes up when someone is seeking to prevent a let down or disappointment by communicating in advance what should be expected.

I believe that a big part of the ability to understand the expectations of others is empathy. If a person is unable or unwilling to put themselves in another’s shoes, then the ability to understand the why behind another’s actions or beliefs or reactions is significantly compromised. I would venture to guess that the source of many conflicts, many disappointments, many relationship woes is a violation of someone’s expectations, communicated or otherwise.

I am bad about communicating expectations up front. Sometimes this is because I’m not always consciously aware of my expectations; sometimes it’s because I often think my expectations are just universal requirements. Sometimes this is because I typically expect others to react as I would.

Isn’t that also universal? Expecting others to react or act the way you would is likely one of the reasons why so many cultural miscommunications happen along with gender miscommunications and so many other things.

And finally that leads me to the concept of “entering in.”

In my view, to enter into the life of another is being willing to shoulder their concerns, look through their eyes, and walk this life with them. It’s a bit like empathy, but with legs. To me, to enter into another person’s life is to experience life with them, not just the ability to see life from their perspective.

I think everyone wants other people to enter into their lives. This intimacy with another person is frankly what we humans are built for. Those of us who are introverts want far less people to enter into our lives than most extroverts, but we all need others who have entered into our lives in order to feel valued as a human being for ourselves, not just for what we can do.

Entering into a life that is uneventful is one thing, it’s quite another to enter into a life when a serious illness is present. In my life, and the lives of many others living with a terminal illness, the rollercoaster of emotions is normal to us but daunting to many others. To enter into another’s suffering requires a different level of intimacy, of vulnerability and of love. To enter into suffering is to put aside one’s desire to have a “normal,” uncomplicated life and to accept that part of your heart is walking around in another person’s body. To enter into another’s suffering is the greatest gift any human being can give to another.

I’ve been blessed throughout my life with people who have entered in. My parents, while not perfect, have demonstrated their willingness to enter into my life in so many ways since I was a child. Even more so now that I’m living with metastatic breast cancer. They’ve never wavered and they’ve made good on their promise when I was diagnosed that I wouldn’t walk this path alone. My husband, who has had to adjust everything in his life to accommodate my needs, holds true to his wedding vows every day. He meant it when he vowed to be by my side through sickness and health, I just wish it had been more the latter and less of the former.

The most unexpected people to enter into my suffering have been those I’ve met in the same or similar situation. The late night conversations, the support group discussions, the care packages … when someone is going through the same thing, a shorthand develops. The uniqueness of saying, I know exactly what you are going through and I’ve experienced it myself, cannot be discounted.

I cannot say strongly enough that to enter into someone else’s life is a gift of incalculable value. To be seen, truly seen, is rare. To be supported, exactly where you are, warts and imperfections and all, is the most healing thing that’s ever happened to me. To know others who are willing to shoulder the very heavy burdens I carry, even for a little while, meets a need that I couldn’t articulate, couldn’t ask for.

Hold onto people who are willing to enter in, bold onto them because they are a rare breed, hold onto them and enter into their lives. There is nothing sweeter or more significant than going there with another person.