Housebound with my daughter for the past 9 days during pandemic shelter in place days, and while flicking around on the remote we stopped to watch the hawking of hand-painted leather purses for $199.99 on the Home Shopping Netwirk.
In case any of you out there decide to douche at midnight during a blackout, I have got the product for you.
This is what you buy when you are detoxing off one of your antidepressants and are waiting for the doc to refill and you haven’t much to do at your new job and are feeling a bit like a useless appendage.
At home there are two dogs wrecking the house, aided and abetted by one five-month-old kitten to whom you are highly allergic but saved from a hoarding situation and have so far gotten her every shot imaginable and had her treated for fleas, extreme underweight, and an upper respiratory infection. There is a nice home waiting for her once she is cured of all her illnesses.
You survive the dander by hanging out in your room and not letting the pets in while they wreck the house on the other side of the door.
In two days is the holiest day of the year, Yom Kippur and while you walk a fine line between Judaism and Catholicism, this is a day you take seriously. And you hope your saving this little baby will somehow convince God to give you a pass for your errors and trespasses of the past year, of which there were a few.
And if you remember, you will say a prayer for all those who broke your heart by not accepting you for who you are and not recognizing that that is what you tried to do for them, grouchy days, sorrowful days, flaws and all. But then you have to send them on their way. Because they won’t ever get it and it is not your charge to make them.
And there are Serenity Slurpees (Coke!) to savor, and scrawny kittens to rescue and cuddle, and prescriptions to be filled, and though it is hard to be misunderstood, you will fly far from the burning bridge visible from your rear view window, and you will ask God for a fresh start.
So, I just read this article that sums up some of what I have been feeling as someone who has “beaten” cancer. (I often feel as if cancer has beaten me, like with a stick, even though I was only Stage 1 and have been told I am free of cancer now.)
You’re left with fear, your single focus of fighting cancer and having doctor upon doctor helping you achieve that goal finishes and then you have to go back to ordinary life, but you are different and so is your life. Someone wrote this in HuffPost, and I hope some can relate.
I realize I started this blog out to be funny. And then life happened, and some things are funny. But some are not.
Love to all.
Here is the LINK to the Huffington Post article.
True story this: When I was a little kid, we lived in the city (THE city), and my Auntie Betty, the person second only to Jesus Christ himself for a good and kind heart in the history of this planet, used to take us on the bus from Staten Island to Queens or Manhattan, or from her apartment in Queens to Manhattan, all over. We were quite the little bus riders back in the day. And I used to get upset as a kid of about 7 when I saw the old people on the bus, and Auntie Betty wanted to know why, and I was sad because the old people on the bus were going to die soon, and that just broke my heart.
And to this day, my mother has my schoolwork from when I was a little kid, and for current events I used to being in obituaries. My mother has notebook pages with obituaries taped to them and scrawled first-grade pencil descriptions about the person who died. I distinctly remember one that said, “This man made hats.”
Some people are just born melancholy and morbid. If you work with me, you know I can turn a normal conversation into one about my neighbor being run down by a bus and leaving behind a whole house of foster dogs and then walk away leaving some group of formerly cheery individuals searching for a funny anecdote.
Nature, nurture, hello; my sister is not like this.
So, when you are attuned to all the negative in the world (I had to stop watching political shows and one night watched a documentary about Diane Schuler, who drive her car the wrong way on the Taconic Parkway in NY state, killing many; this is what makes me feel better than CNN), when the positive comes along, you should celebrate it.
So, my son recently went on vacation to Beirut. Here is why. He is going out with a young woman who pursued Middle Eastern Studies in college and who speaks Arabic. She is on an internship with the United Nations and working with Palestinian refugees in Lebanon. They are mostly women and children, and this work is not going to make her rich. But it is what her life’s purpose is: helping poor people who have been displaced and have no homes and are struggling.
So, the Mueller report won’t save us and Jeff Bezos should be helping these people, but is not, and Warren Buffett, it turns out, is big in ripping off people who are trapped living in mobile homes they have paid for on land that is not theirs so they have to pay whatever lot rate is thrown at them.
But, there is Amy. And others like her. And I can get up in the morning knowing this, even if riding the train to New York makes me sad for the old people.
I work at a drug company. A large, large drug company.
Bernie Sanders would say I work for “big pharma.” He’s right. I do. I’m proud to work in pharma, I don’t view it as an insult, and I think it’s a shame some do. We do good work.
While I don’t consider myself a mere cog in the wheel, I am not a muckety-muck where I work, just someone doing my small part at a big company. I read drug promotions for health care practitioners and patients. I hope my edits and insight add value to the materials I review and make them more clear to the reader. Particularly if they are a patient, as most patients start out with no knowledge of disease states, adverse events, and contraindications. Being diagnosed with something life-threatening is frightening enough without being confused about dosages and side effects and whether or not it’s okay to eat grapefruit while you are on a medication.
Not only is my company quite large, most of the things associated with it are large, too. I work in an enormous building that houses thousands of people. We’re in “open space,” so there are rows of individuals on each floor with no walls between them. Nobody has an office, so it’s egalitarian. But there are always a lot of people about. Hit the cafeteria between noon and 12:30, and you’re going to stand on line, surrounded by humanity, to wait for your meal. 11:45 and 1:15 are much better times to be hungry.
Our lobby, airy and open, can seem like an airport or some other huge space. A friend who used to work with me said once about it, “The only thing that’s missing is the set of mastodon bones.” They’d fit pretty well, too.
The parking lot goes out a long way, and if you arrive much past 8:30 a.m., you end up parking in what I refer to as “The Hinterlands” or “West Mesopotamia.” You get a good number of your steps in walking to the office from that parking area, but heaven help you if didn’t allot enough walk time to get to your 9:00 meeting.
I tend to work late, and I have often gotten to my car as the sun is preparing to leave the sky, and when I look at our building from a bit of a distance I see how pretty it really is. I’ve taken photos of it in that light, sometimes posting it on social media with a cutline as vague as, “You know, it really is a pretty building.” I would go so far to say it’s beautiful.
Though I enjoy people well enough, and many of my immediate coworkers are people I quite like, I’m not one who has taken wholeheartedly to the whole open space thing. Even after 2 years, I miss my cubicle of old, at the edge of our floor and by a window, where we kept lots of plants. Though I appear on the surface to be friendly and outgoing, I’m actually quite socially awkward and uncomfortable being around people all the time. “Unconventional,” “noncomforming,” and “quirky” are words used to describe people like myself. “Weird” has been thrown about a bit, too…
In this expansive work environment, there are times that my quirky, weird, awkward self would like to feel a bit smaller, maybe even invisible. In my own corner doing my thing with not many people about, even though they are mostly people I like. Because maybe with the sheer number of humans around to be smiled at or acknowledged, it’s easy to stop feeling like an individual at times. Perhaps it’s me, but sometimes my purpose gets lost in these waves of people and my rote and regular smiles and waves and nods as I go to get a cup of coffee. Sometimes I’m just not up for it, though I’ll never stop feeling obligated.
So, yeah, I guess the point of all that is that the place where I work is big.
Since my last surgery and the subsequent medications I’ve been put on to deal with the repercussions of it, I don’t sleep as well as I used to. The other night I woke up after a few hours of sleep; the antihistamines I started taking to celebrate the impending arrival of spring do not keep me knocked out the way they once did. Grabbed my cell phone, checked the time, went on YouTube to watch my typical Dr. Sandra Lee cyst-removal videos until I was tired enough to fall back asleep. Under the Dr. Lee video I was watching, YouTube had a list of suggesteds, and one was a video by a British cancer patient named Charlotte. I clicked.
Charlotte spoke of being 18 and frustrated that her cancer was affecting so much of her life. Her vision was bad, and her left eye wasn’t working properly. She’d gained weight from her treatment and felt bad about her body. Her mother had bought her a cane because her balance wasn’t good, and she’d been reluctant to use it but now knew she would have to. She was upset because she’d had a seizure when she was 16 and had been prevented from learning to drive for 2 years, and just when that 2 years was about over, doctors found new tumor growth. She didn’t know if she would ever learn to drive.
Charlotte paused for her words at times; sometimes she just stopped speaking for a while altogether. Her sad expression spoke volumes, anyway. She was dealing with a hell of a lot for an 18 year old. One thing she said summed it all up: “I just want this cancer to go away.”
My heart went out to this girl dealing with so much. I went to her YouTube channel and put the videos in chronological order, and started watching from the beginning.
They started out with a more petite, more lively, 17-year-old Charlotte. She’d found out at age 16 she had a rare form of brain cancer. It was the day of her prom.
She’d had chemo and lost her hair, and it was growing in. She looked lovely with her short hair and frequently combed her bangs with her fingers. She’d spent 5 days a week over the past year going to the hospital for treatment. She paused at times to think about what she wanted to say. Charlotte was unrehearsed.
Charlotte had been shy, but her cancer fight had given her the need to speak up and tell people about what it is like to be a teenager with cancer. To answer questions. She felt like most cancer videos were addressed to an adult audience, and she wanted to have something addressed to teens. And she loved fashion and makeup, and she loved cats. Of course, she did. Don’t many teenage girls love these very same things?
Subsequent videos, many filmed in Charlotte’s room, were about fashion and makeup, how to deal with hair loss. Showing off an outfit. Wearing a cute wig. Lamenting about not going to university and spending too much time inside. Explaining how going on steroids makes you put on a lot of weight quickly and that this had happened to her previously. And how it felt when she’d been in a car with a handicapped tag and people looked at her as if she were scamming for a parking spot. The joy of a new video camera for her YouTube channel.
And wanting to get back the time she’d lost, getting back the teenage years where she was being treated for cancer and not on vacation or doing things with her friends. She loved purses. She bought a lot of her tops at a placed called Top Shop.
Charlotte spoke about being reliant on her mom for so much when she wasn’t well. As a mother, it pained me to think of how her mom must be feeling to know her daughter was going through this. Is there a mother who wouldn’t put themselves in their child’s place if he or she had a brain tumor?
I continued to watch. Charlotte had suffered hearing loss from one of her early chemo treatments. She loved the Kardashians. She hated people telling her when she was bald, “Oh, your hair will grow back.” Yes, it would, but for the time being she was bald. She was a beautiful young lady, and she was beautiful bald, too. But no teenage girl wants to lose her hair.
There were a lot of videos to get through. I jumped around. Then I made a mistake, in my view, anyway. I was moving down and saw a video labeled as the last Charlotte made before she died. Had I been watching these as they were put up, I’d have been rooting for Charlotte in real time. I would want Charlotte to have a happy ending while she was hoping for it.
I did not want to see that video yet. I was not ready. In the earlier videos, Charlotte had so much hope and was so full of life.
I clicked on another further down instead. It must have been filmed after the very first one I watched. It was dark, and Charlotte was in bed. She was swollen up again, from steroids maybe. She says into the camera that the latest treatment is not working. She turns the camera off. In the middle of the night, Charlotte was telling the world that she was frightened. You cannot crawl into the computer, you cannot hug this person, and you couldn’t even if she were still here. You can’t make this frightened child feel better. There is nothing you can do. Nothing. And you want to.
In the last video she made before she passed away, Charlotte’s mother had to narrate. Charlotte was in a chair and only able to wave twice as her mother spoke of Charlotte’s hope, still, that medicine could heal her body. Charlotte could not even hold up her head.
The cancer that gave this sweet girl her voice to speak up for teenagers with cancer ended up stealing that voice, along with all of Charlotte’s other abilities.
Charlotte was hospitalized soon thereafter. She was 19 years old when she died. What killed her was a glioblastoma in her brain that then spread to her spine. It had developed from her original form of brain tumor that had appeared to be shrinking when the glioblastoma struck.
Her mother and brother still post videos to the channel; they have created a cancer charity in Charlotte’s name to help find a cure for glioblastoma.
In one video after Charlotte’s passing, her mother spoke of not wanting to leave the home they lived in because she felt like she was leaving Charlotte behind, but needing to replace all the bathtubs with shower stalls because the memory of Charlotte physically struggling to step into the bathtub was so painful for her. Something about her mother describing that was particularly unsettling and sad.
I want to watch all of Charlotte’s videos, but I cannot right now. It is hard to watch a young person have hope, get that hope dashed, and know that she will not get well.
When I think about what Charlotte wanted, to have those lost years back, was she really asking for anything so extraordinary? It seems to me a small request when a young girl asks for a year or two without cancer treatment to replace the ones where she’s had to endure it. It seems a small hope to wish to live to be 20 or 25 or 30 when you are 16 or 17 years old.
What Charlotte wanted really was not very big at all. I wish she had gotten it.
My large, large company makes cancer drugs, among others. At least one drug we manufacture is in clinical study right now, in combination with other therapies, for the treatment of glioblastoma. It’s an extremely aggressive cancer. The study will take time. Children like Charlotte do not have much time, but people are out there trying to give it to them.
This drug and others may have some success, may have some failures. Somewhere, I hope, is an idea in someone’s head at this moment that will pan out when implemented. That will shrink tumors and stop them from multiplying.
Somewhere out there right now is also a child who is carefree, but who in a few years will be sick with cancer. It is the sad and ugly truth, even though no one wants it to be. And when they are being treated and they say, “I want my years back, I want back those years I was treated and I want them to be free of pain and cancer,” I want a doctor to be able to tell them truthfully that their chances are excellent and that that is what is going to happen.
It won’t help lovely Charlotte. But it may help ease her mother’s pain.
And for Charlotte and her mother and her brother, I will fake my smiles and greetings and continue to put up with a parking spot in West Mesopotamia and a cafeteria swimming with humanity. It is not that big a thing to do in order for the next Charlotte to get her small ask and get her years without treatment, to get her time at university, to keep her head of hair, to get to grow up without being afraid that her treatment is not working.
Rest well, beautiful Charlotte.
So, about Elizabeth Warren and the DNA test that says she has a Native American ancestor from generations ago: she thought she was of Native American ancestry and it’s what she believed. It was lore that was passed down by family and over the generations it got older, but it is what she believed to be true.
And it’s personal for me because…I just had my DNA done. I am adopted by Jewish people and self-identify as a Jew, but I also have this Catholic-Jesus thing, so I call myself Jatholic. Now, my birth mom was Catholic, but one of her (my) relatives told me my father was Jewish, and that all fit for me. It was my ideal. Catholic and Jewish.
Then I get my DNA done, and I am 99.9% European, but only 0.2% Askenazi Jew. There are like 2 drops of Jewish blood in my body.
So this is sort of an existential crisis for me, but I am prone to saying, “Oy Gottenu” and “it’s a shandeh and a charpeh” and around my neck I wear two Catholic miraculous medals, a hamsa, a Star of David my daughter bought me, and the Icelandic Viking bindrune for the word love.
As far as I’m concerned, the two drops make me enough of a Jew to take Yom Kippur off and feel bad about all the shitty things I have done in the previous year.
And as far as I am concerned, Elizabeth Warren is Native American.
Remember what Cher said to Winona Ryder’s character in the movie “Mermaids” as she prayed before the statues of Mary and Jesus on her dresser: “Charlotte, we’re Jewish.”