Tag Archives: stage IV lung cancer

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

Just can’t stay away

Pretending to sleep selfie ๐Ÿ™‚

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

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.

So….

I am grateful that I have a home.

And not one but two oncologists who care about me (Dr. Lin and–always–Dr. Shaw).

Kumo is a comfort if sometimes an unwelcome responsibility–thank goodness for Susan who spells me when I am getting treatment.

My family and friends have been fabulous–both those who are close and those who are far and some whom I have yet to have the pleasure to meet. Thanks for checking in and for taking care of me in so many ways.

Jemesii, August and Peter, you’ve done a fabulous job of doubling down on staying in touch. Now, more than ever, you are my raison d’รชtre. I love you.

Netflix, alcohol, weed and sleep–you’ve all played a solid role in keeping me this side of sane as well.

What would I change? Well, first there would be no bloody pandemic. Yup. Could have lived a lifetime without this tragedy on a world scale.

Secondly, I would not be alone. Social isolation is proving to be one of the most difficult challenges I have ever faced. Too much me time and this girl has the potential to get weird. And under extraordinary circumstances? Well.

I’d also love to have a garden and a little yard. Perhaps a secret path to an isolated beach. Someone to hold me at night.

And hey–wouldn’t it be great to be healthy as a baseline. Not in treatment. Hale and hearty. Head full of hair.

There’s no winding back on this reality though. I understand how fortunate I am compared to many. And the little bit of kick ass that I still possess keeps reminding me that there is the potential for personal growth here. And that I am in fact in need of some tweaking (I keep having dreams about closets that I thought were empty only to discover that they are in fact packed with shit that needs to be gone through).

I’ve always been a good pep talker and these days, I am my primary audience.

To that end: ass off the couch. It’s not yet cocktail hour ๐Ÿ˜‰

This is not a drill

So here we are–perhaps a month into what is likely going to be a long haul.

Can’t say I’m loving it but, as humans are won’t to do, I am adjusting.

Yep. Perhaps it is the up-dose of Prozac, or at least in part. I also think I am simply acclimating to a non negotiable circumstance.

Interestingly, this particular situation has proved a trigger for earlier traumas. I am assured by a therapist friend that this is not unusual. Discomfiting, perhaps, but also instructional.

Clearly I have benefitted greatly from distraction. Now that it is me, myself and I–there is really nowhere to turn but inward. And it would seem I have some unfinished business.

In every crisis there is opportunity. I have some major detoxing to do, which is how I am choosing to look at this particular challenge.

Mental housecleaning, and with all this time on my hands, I am getting to those corners which have been easy to overlook. There is the potential for a squeaky clean start to whatever comes next.

The trick is believing. In the future itself as well as the strength to get there.

xo

Bugaboo

Nope, it’s not COVID-19, although that is obviously a continuing source of anxiety.

My bigger problem right now is depression. Unlike coronavirus, there is no potential for avoiding this situation.

Depression runs through my family like a deep vein of coal. Sometimes it is easy to say my underlying sadness is situational, other times it just is. Like a shadow, some sort of darkness has always remained attached to me in one way or another.

Fortunately I have found ways to address my mood disorder. Counseling, antidepressants. But also diversion. If I am busy enough, it is generally sufficient to overcome.

What is happening right now is a game changer. Extroversion is part of my natural defense against despondency. And never in my life have I gone three weeks with no one touching me unless they were taking my blood pressure, attaching EKG leads, or poking me with a needle.

Sure, I have Kumo, my little white dog. He is an amazing comfort but it is not the same as the company of a human being.

I find myself arising in the morning only to go back to bed. I would rather sleep than do anything else and that is simply not normal.

Yesterday I asked my oncologist if we could double my dose of Prozac. This is a first for me, and I am hoping it is temporary.

However I am determined that I shall not be brought down by my very own demons. In some ways, this is the most difficult thing I have ever done, because of the complete and total social isolation. Desert islands are not my idea of paradise. I need contact–I need people. But I also need to make absolutely certain I don’t come down with COVID-19.

FIFTEEN


Oh yeah. I might not have noticed if one of my friends had not brought it to my attention. Yup. Just kinda snuck in there—fifteen years ago I was diagnosed with lung cancer at the age of 45. Now I’m 60.

Mind blowing, all of it. Were I not social isolating and frankly so damn depressed, I’d throw a party. I guess we’re just going to have to call a raincheck.

This coming year may be the diciest yet when it comes to survival but there will be no throwing in of the towel here. Just going to have to work on some new coping mechanisms. I have gone on record saying I like a challenge…although a global pandemic was not exactly what I had in mind.

Anyway, big love to all of you. Literally could not do this without you and I am imagining one giant virtual group hug.

xoxoxo