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.
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 somevery 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 inhibitorwill 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.
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’être. 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 😉
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.
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.
I had my scan a week ago and Dr. Lin called me the following day with her impression–Alice followed up on Saturday.
One of the most difficult aspects of being an oncologist is trying to keep both body and hope alive for patients. Jess (Dr. Lin) and Alice both felt the the subpleural opacity in my left upper lobe was possibly less dense than previous scans–‘more aerosolized’ is the way Alice put it. Maybe whatever the heck that is (never definitely labeled cancer) is partially resolving, and therefore accounting for the improvement in my breathing. It would be nice to think so.
I did not receive the official read of the scan until today and I must say, it is lackluster; said with all due euphemism.
Keeping body and soul together is getting to be more difficult for me as well. Neither of the last two treatments would appear to be a panacea. And social isolation is sapping me of my usual reserve of joy. These times were not made for extroverts.
Now my job is to just hold it all together in what sometimes feels like impossible circumstances—if I can avoid getting COVID-19 and keep this cancer from moving from a brush fire to burn the whole goddamn house down, well then I might be around when another treatment becomes available.
My general MO is to overcome and forge ahead—if you told me I had to walk 100 miles today I would be game to try. Laying low is an entirely different animal and I’m not gonna lie, one heck of a reach for me. But I am going to do my darnedest to hang in.
TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST COMPARISON: Chest CT dating back to 1/18/2019 FINDINGS:Lines/tubes: None. Lungs and Airways: Status post left lower lobectomy. The central airways are patent. There are new groundglass and tree-in-bud nodules in the anterior right upper lobe for example on images 49-51. There are also multiple enlarging subsolid nodules in the right upper lobe for example image 49 nodule measures up to 8 mm compared to 5 mm prior. Multiple nodules in the left upper lobe has also increased in size and attenuation compared to recent prior, for example spiculated nodule in the right upper lobe on image 53, measuring up to 10 mm compared to 9 mm prior, image 44 nodule now measuring 4 mm compared to 2 mm prior, and subpleural nodule on image 43 measuring up to 8 mm compared to 7 mm prior. The dominant subpleural consolidative opacity along the lateral left upper lobe is essentially unchanged compared to recent prior now measuring 17 x 29 mm (image 64). The confluent consolidative opacity at the left lung base is without significant change in size compared to recent prior, measuring 77 x 20 mm (image 80). Pleura: Stable small loculated left pleural effusion with associated pleural and interlobular septal thickening. There is unchanged biapical pleural-parenchymal thickening/scarring, left greater than right. Heart and mediastinum: The thyroid gland is normal. Stable mediastinal and hilar lymph nodes measuring up to 6 mm in short axis, for example low pretracheal node on series 302 image 42 and AP node on image 46. The cardiac chambers are normal in size. There is no pericardial effusion. Soft tissues: There is no significant subpectoral or axillary lymphadenopathy. Abdomen: Please see separate CT abdomen and pelvis report of same day. Bones: There is moderate spinal degenerative changes. No suspicious lytic or blastic lesions. IMPRESSION: Lung cancer surveillance status post left lower lobectomy: Subpleural consolidative masslike opacity along the lateral left upper lobe is unchanged compared to most recent prior but remains suspicious for primary lung malignancy. Stable small loculated pleural effusion with interlobular septal thickening consistent with lymphangitic carcinomatosis. Enlarging pulmonary nodules bilaterally since at least 7/5/2019 suspicious for progression of metastatic disease. New groundglass and tree-in-bud nodules in the anterior right upper lobe may represent inflammatory or infectious process. Attention on follow up is advised.
I was certain this scan was going to show improvement. Yeah, based on my symptoms (no cough, only a teensy little wheeze) that I was responding.
Sigh. Dr. Lin called today after reviewing the scans and she feels that overall there may be some stability. But that there are some small spots that actually seem to be larger.
Not the news I wanted considering the side effects of treatment. My mucositis refuses to stand down even with the addition of morphine (not a mouthwash as I had originally thought, but an elixir). At the moment I have one very large sore under the right side of my tongue and four smaller ones on the left. Eating is a formidable challenge and I have lost about ten pounds since starting the trial. So we are going to delay infusion by a week.
Of course I asked about other options, given the lackluster response. We could return to the previous plan, lorlatinib plus a MEK inhibitor. That trial has yet to open but rumor has it it still will and soon.
So I guess DS-1062a might not be the drug for me. Again, damn.
In the meantime all I can do is keep trudging forward while trying to keep it all together. Physically, emotionally, spiritually.
I had CT scans and an echocardiogram at MGH yesterday. This time everyone was wearing masks. I had brought an N95 with the little plastic respirator, and while I was in the waiting room (alone), a nurse came out and explained to me that although my mask would protect me, if I had coronavirus it would not protect the health care workers (air flow in and out). So she brought me out two surgical masks and asked me to put them on instead. However two made me a little panicky, as it was difficult to breathe, so I removed one of them.
Evidently I made it out of MGH just in time, as shortly after my departure five explosions rocked the street—not a dumpster fire (!) but rather manholes that were on fire. If it’s not one thing, it’s two. Or five.
Tomorrow I have another infusion scheduled. Unfortunately my mouth sores have not healed–a less than ideal scenario. However we will be going down in dose and unless the CT scan indicates otherwise, it is my sense that my cancer is responding to treatment. I would like to get the mucositis/mouth sores under control, but even if I can’t, I feel it is best to get a few more doses under my belt.
…is changing in this rapidly evolving world of COVID-19.
Yesterday there was a twitter chat (amongst medical professionals) that posed the question whether late line chemo should, under the circumstances, be suspended. To my horror many of those chiming in were on board and amongst the comments (the first by the individual who made the original query) were these two gems: ‘…the resources will be needed elsewhere!‘ and’…tying up space and health care workers in chemo war that would be more useful in triage, ICU, ER, etc…’
For the sake of clarity, the post that got me going was this: ‘Oncology Twitter: uncomfortable question. Hospitals are suspending elective surgeries in prep for COVID. Should our field be suspending some chemo–late line, minimal evidence for benefit, etc? Or at least not starting new regimens?‘
The author is an MD, MPH in medical ethics and health policy.
Technically my official expiration date was twelve, not thirteen years ago but I was in a state as I posted my response. Livid, actually.
Have we come to this? Advanced cancer patients to the back of the bus/bottom of the food chain? Because my life is worth less than that of a previously healthy person?
Today I spoke to Dr. Lin, my other oncologist. On Thursday I am scheduled to go to MGH for pharmokinetics and a physical, but as these are nonessentials, that appointment would now be virtual. However, I am having a devil of a time with the mucositis. Jess wants me to come in on Thursday for some IV fluids–it is difficult to eat–and to pick up a hard copy scrip for a mouthwash with morphine in it. And we will definitely be going down in dose again.
I asked her if I needed to worry about the trial being scuttled and she responded that they are keeping a close eye on things. That is not yes or no but I understand that we are all making this up as we go along.
I also shared with her the gist of the conversation on twitter, telling her that such sentiment was a source of great anxiety in my community (as if we need more to worry about). She was incredibly sympathetic and supportive and after our conversation, sent me this message:
‘It was good to talk on the phone. I just wanted to follow up on what you had shared with me earlier. You (our patients) are so important and special to us. And so I am so sorry to hear of all of the anxiety and fear that this situation has been causing the community. It is, of course, not surprising: This has – needless to say – been an incredibly challenging time, full of fast-paced change and uncertainties. But one thing you can be certain of amidst these uncertainties, is that we will continue to be your physicians and advocates during this time. We are doing this together, and we’ve got you.’