Make some noise

When I was in junior high one of my teachers took me out into the hall, grabbed me by the shoulders and slammed me up against a locker. ‘I’m tired of your bitching, Olson.’ This was before the advent of cell phones–he would never get away with that now. As it was, this teacher was later promoted to principal.

I was small, shy and relatively quiet as a child. But I never hesitated to speak up if I felt something was unfair.

Undoubtedly this made life more difficult for me, but I simply could not save myself (or sometimes others) the ensuing trouble.

Being a child, girl, student, employee, tenant, single mother and wife have all made me more cognizant of social injustice. As has the double edged sword of clinical trial participation.

But I have no experience with what it is like to live with a darker complexion.

As a girl/woman, I have always had to be careful about where I went and particularly after dark. But people of color are being killed in broad daylight, by the very organization that is supposed to protect us. According to Wikipedia:

‘The police are a constituted body of persons empowered by a state to enforce the law, to ensure the safety, health and possessions of citizens, and to prevent crime and civil disorder. Their lawful powers include arrest and the legitimized use of force.

Those last five words have been blatantly abused. Driving while black (or walking, running, just being) are not a legitimate lead up to use of force.

I hate what is happening, again and again. I am angry–very, very angry. And imagine if I also had to be afraid? If my skin color made me or my children suspect?

There has to be an outlet for this anger. I would explain to my young children that although positive attention was first choice, negative attention (acting out) was still preferable to those who never said anything at all. This was in reference to classmates who would consistently get in trouble. ‘It is those who go unnoticed that I worry most about’ I would tell them.

We all need agency, and the confidence to stand up for ourselves. Of course, if doing so might get you killed, then that’s another issue.

This has to stop. But in order for that to happen there has to be solidarity. We must all demand that racial profiling end. And that those in power stop abusing it. And if they do, that they are prosecuted to the full extent of the law–the very law they supposedly represent.

The anxiety

It’s Tuesday. Although my mucositis is much improved I still have sores in my mouth and esophagus–almost five weeks after my last infusion.

I am scheduled for my fifth infusion on Thursday. However Dr. Lin called me this morning and it pushing it back another week–fortunately the trial allows for up to a four week delay.

Do I go for one more? Maybe even two? Wait until my next scan to decide?

Damn this is difficult.

My mood is so very improved and I suspect there is a direct relationship between positivity/motivation and feeling better. I am decidedly anxious that if I get another infusion, it will not only be my mouth that starts hurting again.

So I don’t know. My higher morale has also been correlative with a greater desire to survive. And the difficulty with clinical trials as they currently exist is that as a participant I am given very little latitude. Should I drop out there is no returning.

Chances are I’m going with infusion, simply because it places me in a position of greater options. But psychologically, this is a tough one.

I’m so very relieved that I have another week to think and hopefully heal.

OUT

I have been an out atheist since my late teens. Not a casual decision; hell, my first crush was on Jesus—that handsome man with long brown hair and a beard as depicted on the little print I received as a prize in Sunday School after memorizing the Lord’s Prayer.

No. I gave religion a lot of thought and ultimately simply could not suspend my disbelief.

Back then I was in the minority, or at least seemingly so. If others questioned their belief in God they kept it to themselves, something I never felt obligated to do.

Through the years there have been both multiple and in at least one case, ongoing campaigns to convert me. And….not gonna happen.

My atheism is not nothing–it is my own well thought out belief system. Although some would argue to the contrary, atheism is not synonymous with amorality. I have a strong moral compass, one that is dictated not by rules but rather by what is right. And being atheist certainly doesn’t mean I ‘hate’ God, something I was recently accused of. I also don’t believe in unicorns, but that doesn’t mean I hate unicorns.

Many if not most of my friends subscribe to one organized religion or another and I have always been respectful of their belief system. Unfortunately, the respect has not always gone both ways.

For the most part I have been extremely tolerant. I understand that when someone is trying to convert me they feel they are doing me a favor. But, you are not. I’m good here; happy atheist if you will.

A week ago a family member sent me a card. They acknowledged how hard I have fought to stay alive: ‘most people would have given up years ago.’ But that was followed with this piece of advice; ‘Perhaps God is waiting for you to choose eternal life with Him.’

I cried. And then I drank too much.

The next morning I made some decisions. No more Ms Nice Guy when I am being blatantly disrespected.

Fortunately, reverse psychology often works for me. Case in point, in junior high my band teacher told me I would never master my instrument (a flute) because I had a cupid’s bow on my upper lip. Well damned if this girl didn’t go on to sit in first chair in both band and orchestra. If you tell me I can’t, I likely will.

But if you try to get me to do something that is in conflict with my personal beliefs, well, don’t even. I am open minded but I am not malleable.

And if there is a God, well they (I simply can’t gender something like God) are going to have to wait. I am in no hurry to find out if I am right or wrong.

None whatsoever.

xo

Could this be….MOJO?

Still dealing with those darn mouth sores and the radiologist’s interpretation of my latest scan would seem to indicate stability (not the word used—rather ‘unchanged’). This is going to be a tough call–glad I have another week to heal and ponder whether I shall go for another infusion.

My date was fun and fine. Hard to say if there will be a second. Truth is, my cancer is easier for others to accept when I don’t look or act like I have cancer. The empirical evidence is that I have been ghosted (for those not privy to the parlance of online dating—when communication stops abruptly) on a rather frequent basis lately after talking and meeting both–and that did not happen previously. Bit of a hit to my ego but I am also a realist—I do get it.

However, (and this is important) I think I am falling in love with my own life again.

Yup. I now feel as if I walked through some deep and depressing valley for weeks on end. No fun, that, However, I also understood that the deprivation of human contact combined with extreme discomfort might allow for some personal growth. Sort of a back to the basics deep soul search.

I have been learning a lot about myself in isolation. Not all pretty but again, that is where I have the most potential for needed improvement. Facing my demons sort of thing. Depression, procrastination, a tendency to burrow in rather than reaching out. I am working on all of this. Slowly, but surely.

When I got up this morning I felt something akin to motivation. It’s been a long time. Rather than heading back to bed, I have been getting things done. Writing, paying bills, talking to a reporter. Not bad for one morning. This afternoon I am heading to my studio. On Sunday my friend Jim and my son Peter are going to assist me in clearing out a storage unit with the rest of my art stuff. By next week I hope to have a regular schedule established—writing in the morning, art in the afternoon. Oh yeah, and it’s time to start exercising again as well.

The pandemic has imposed limitations but I am figuring out a way to work within them. My next goal is to reestablish a relationship with my old friends Hope and Joy.

xo

Image

When negative is a fine thing

Just can’t stay away

Pretending to sleep selfie 🙂

So today I had the opportunity to visit the Termeer Center in its current incarnation.

My throat hurts so much I got in touch with Dr. Lin yesterday. Although it is almost certainly related to the mucositis, it is odd that I am still in so much discomfort even having skipped my last infusion. The expectation is that by now the mouth sores would have cleared up.

Not. And given that a sore throat can also be related to COVID-19, Dr. Lin thought it might make sense to come in for labs, hydration and a swab.

What a process. I was instructed to make a placard for my car and to park in some designated spaces in a garage that is separate from the Yawkey building. Upon my arrival I called the front desk of the Termeer and two nurses came down to get me. We did not go to the main lobby but rather took a side entrance. Another nurse handed me a surgical mask and hand sanitizer.

When we got to the seventh floor we first stopped in 7B for my bracelet. All the comfy chairs in the waiting room have been replaced with folding chairs that are socially distanced and numbered and there is a big plexiglass facade surrounding the desk.

The Termeer Center had undergone a similar makeover, with plexiglass barriers around the front desk and nurse’s station. Aside from that, the individual rooms looked familiar. However, anyone who entered mine put on a protective gown and face shield first.

After one failed attempt at inserting an IV, the vein whisperer was called in–he once placed IV’s in infants and he nailed my puny vien on the first try. Some waiting around and then a nurse practitioner examined my throat, confirming that I yet had active mucositis. Nonetheless I got tested for COVID-19. Two long swabs, one for each nostril. It was over quickly and not nearly as uncomfortable as some have made it out to be. I should have results by tomorrow morning.

Upon leaving, I was given a barcoded card for FREE parking. Who knew there was such a thing.

Hydrated, I came home to strip off my hospital tainted clothes, shower and a nap. And then I ordered some Aloe Vera Juice and an amino acid supplement called Healios–both suggestions from today’s team.

My expectation is that my COVID results shall be negative–my hope is that I am going to get some relief soon. So very glad that I did not have an infusion last Thursday and that there will not be one this week either–I need some time to heal. And think.

xo

How to be a badass when you’re not actually feeling it

Alright gang. Pandemic and bald head be damned, I am going on a first date tomorrow.

Yessiree bob. Social distancing will be observed (a walk followed by drinks on my deck—six feet of separation).

Truth? I am way nervous. Despite my flagrant display of said bald head in my current online profile, this is my first date ever sans hair.

Our coif. It defines us in so many ways (bad hair day?). It hides a multitude of sins—or at least it feels that way. Being bald is sort of like being naked times 100. Little wispy hairs on my head, no eyebrows, one eyelash—itself an outlier. Let’s hope my dazzling smile and personality shall provide enough distraction.

Were this individual not so compelling I would not put myself out there. However, we have so very much in common and are in total agreement that a pandemic with a partner sucks way less than one without. So, if sparks fly, I will potentially expand my bubble. Wish me luck y’all. Breaking some new ground here. In the unlikeliest of circumstances.

xo

Well this is going to be complicated…

I had scans yesterday and a zoom meeting with Dr. Lin and Dr. Shaw this evening. The ground glass in my right lung shows what appears to be more progression (but they are tiny right now). However, the area at the base of my left lung shows continued improvement.

This, and the relative lack of options, makes my decision harder.

Infusion is scheduled again for tomorrow but given that my mouth is still a mess of sores we are going to wait at least two weeks and then reassess. Ultimately it will be up to me.

Damn. I want to live but I also want to live well. My experience on this trial thus far has been pretty miserable.

However, Alice feels that if we let my mouth heal before another infusion, there is the possibility of ‘resetting’; that the side effects could become more tolerable.

I’ve got an awful lot to ponder.

xo

And some piece of mind

I have scans again one week from today. Two days later I am to review them and to have another infusion. I already know that my new oncologist will not be able to meet with me that day—I believe she shall be in the ICU. Younger doctors are being asked to fill all sorts of roles now—previously she was on the COVID19 unit. I am sure they are receiving a phenomenal education but the stress must be extraordinary. And of course, it is hard for their cancer patients as well.

Given the gravity of my decision (yes) I decided that it was best to get in touch with Alice. Yesterday I sent her this message:

“Good morning. Scans a week from Tuesday and I won’t actually be seeing Jess so thought I’d discuss with you. I have been pretty flipping miserable for weeks now—physically and emotionally. Last night my mouth/throat/tongue were the worst yet. Unless those scans show some very compelling reason as to why to stay on this I am done. Done to the point that even if there is not a good next choice done. If I have six months to live I’d rather not be miserable. If there is a good chance the MEK inhibitor will have similar side effects than it is not the drug for me. Honestly I have been so depressed that at times I have been ready to call it quits all together. However, given the possibility of improvement while retaining quality of life, I could rally. So let’s discuss what that might or might not look like.

She responded immediately and then called me later. This next scan shall be telling but my mind is made up per suffering—if it is for naught, I am not on board.

Today was better—the discomfort remains great but knowing that I have drawn a line in the sand I feel safer somehow. Just as it is powerful to know one’s strengths it is also imperative to appreciate one’s limits.

I love life. So very much. But pain is incredibly demoralizing and I have made the choice that for me, not how I wish to spend the rest of my time here.

Fingers crossed that there is an easier option.

QOL

I have always been about quantity when it came to life. More, more, more, more, more.

And I recognized that I might learn something from current circumstances, I just could not have anticipated what that might actually be.

Quality, my friends. Quality of life.

I never met a side effect that I couldn’t overcome before. But then again, I have never met said side effect while also experiencing the social isolation and general deprivation that is part and parcel of a pandemic.

In two weeks I shall have scans again. I have already decided that if there is not some compelling reason to continue this treatment regimen, I am out. Mucositis sucks more than I could have imagined. To the point that I would rather be sleeping than awake. Morphine has become one of my best friends. And that’s not a life of quality.

If there is something else to try with more tolerable side effects, I shall consider it. But I am also thinking—for the first time ever—that this might be a good time to bow out gracefully.

And that is part of my lesson. That just being alive is not necessarily enough. That sometimes the price you pay might just be too high.

Quality. The essential nature of being.