As most of you know, my sister Emily is an emergency room doctor. I’ve asked her to keep me updated regarding the challenges at work, and I’m converting her messages into a series of blog posts. This is the second post in the series.
She says:
Our lack of PPE [personal protective equipment] is still shocking me. Previously we would use our N95 masks once and then dispose of them. We are now being required to reuse them for five shifts in a row. We are then storing them in a paper bag with the hopes that if we wait 10 days or so, any virus will be non-viable and we can potentially reuse them again.
They gave us new gowns today. I’m not quite sure what the purpose of them is because they are completely permeable. One of my coworkers misted some cleaning spray on his arm while wearing the gown and it did nothing to block the liquid. I’m pretty sure it’s only so patients think that we are using PPE.
This is excellent, for anyone in the middle generations who grew up listening to Queen and have a love-hate relationship with the Bohemian Rhapsody. (Thanks to Laura for sending it.)
I’m going to try to write this without TMI (over-sharing), but we’re talking about colorectal cancer…
You’ve been patient with me as I’ve ranted about this and that, so you deserve to celebrate with me as I announce that my GI tract has suddenly decided to start working!
I won’t go into details about what “not working” looked like, but it was bad. And the doctors couldn’t give me much reassurance about how much things would improve because everyone’s outcome is different. My tumor wasn’t out in middle of the colon somewhere easy to deal with; it was far too low, far too close to some critical muscles.
And I was making no improvement! There’s nothing more reassuring than slow and steady progress. But there was no progress at all. Weeks passed with absolutely no improvement. It’s been an entire month since my surgery. I was wondering, would I ever have a normal life again?
And then abruptly – it wasn’t gradual at all – just suddenly I’m normal again. It’s all working! Completely and entirely working like nothing ever happened! At first I wondered if it were just a fluke, but it’s been 48 hours now. I’ve been totally, completely, GI normal for TWO DAYS!
That doesn’t mean I won’t have some setbacks, but now I know that normal is possible. I’m not broken forever. I am so grateful.
I want to celebrate by going somewhere, lol, because now I finally can! Except – oh wait – I guess I can’t go anywhere. Dumb coronavirus.
My cancer surgery in Boston was on February 28. We were supposed to get the all-important pathology report by March 9, but because of the coronavirus nothing is working smoothly anymore. We eventually got a verbal report on March 13, and the actual digital copy of the report on March 16. I immediately, within 5 minutes of getting it, emailed my records to my primary care doctor in Albuquerque requesting a referral to an oncologist.
Nothing happened. A few days later we got concerned and started calling every doctor we knew in Albuquerque – John’s primary care doctor, the guy who did my colonoscopy, etc., and we also directly called one of the main cancer centers. Finally, just this Monday (March 23), a nurse from the cancer center calls us and asks for our records, which I sent within 5 minutes of getting off the call. She told us that the doctor would call yesterday, so we monitored my cell phone the whole day. No call.
Then this morning the cancer center called again, and the medical assistant calling thought she had my pathology report – but all she had was the pathology report from the colonoscopy back in January, which apparently the colonoscopy doctor had sent in. She did not have the one from my surgery – she didn’t even know I had surgery! I had sent all the records, but apparently the nurse from Monday hadn’t actually managed to get them into my file or to the doctor.
So 5 minutes after that call, I sent the medical assistant my records. Now, supposedly, a doctor is going to call me tomorrow. We shall see. I’ve been frantically sending my records to everyone who is willing to give me an email. Please just give my records to a doctor – any doctor!
It looks like I’m being assigned to a doctor I actually saw once before. When I first got a low white blood cell count, I was sent to see a hematologist at the cancer center. At the time, we thought I might have lupus, which runs in the family. But then I had the colonoscopy and you know the story. Anyway, turns out the hematologist is also an oncologist. She doesn’t specialize in my exact type of cancer, but I think prescribing chemo is pretty straight forward. Right now I will take whatever doctor I can get.
Meanwhile, because of the coronavirus, I am officially in 2-week quarantine because I was traveling from out of state, and only got home on Saturday. So they won’t schedule an office visit, which is fine with me, I don’t want to go in anyway. Except I need chemo.
Here’s my hope – what I would really love to have happen is the doctor prescribe chemo in pill form. Usually chemo is done intravenously via an IV or a port. But sometimes it can be administered in pill form. If someone would just send me chemo pills, I would be set! I don’t even know if that’s an option for my type of cancer. But I would very much like to stay home and not be going in for a port and/or IVs.
Of course I’m still going to have all the horrible side effects of chemo either way. Chemo is a poison – it targets fast-growing cells. So it kills cancer cells, and unfortunately also kills other normal, needed, fast-growing cells in the body. So the pills wouldn’t be any less miserable, but at least I could be miserable at home.
I know you’ve already all seen too many coronavirus articles and don’t need me posting another. But I’m just so worried about my sister and her family. This is a good but scary article written by an ER doctor just like Emily.
As most of you know, my sister Emily is an emergency room doctor. I’ve asked her to keep me updated regarding the challenges at work, and I’m going to convert her messages into a series of blog posts.
Emily has been home on maternity leave, with her beautiful new baby girl. She starts back to work today. In preparation, she texted a coworker yesterday to ask what to expect.
Her coworker said, “snag a face shield if you can find one and keep it in your bag.”
A face shield is a piece of plastic that goes around your face. (Google image)
Emily doesn’t have a face shield. She says if she can’t find one, she might be able to find a pair of goggles big enough to go over her glasses. She says a droplet of virus into the eyes is the same as into the nose or mouth.
So our brother, who is a scientist with a small research lab, rushed to overnight ship a pair of lab googles to her.
Emily says N95 respirator masks are so rare that they’re only allowed to use them if they are intubating (an invasive procedure that throws aerosols everywhere). Regular masks are being rationed and reused.
She says “Honestly just wish I got infected now, get over it, and can move on.”
That made me cry. I wish there was something we could do.
Delivery drivers are really stressed and overworked right now. And I am very grateful for anything brought to my door because I can’t go out. Even if there was no coronavirus, I can’t go out because my slow recovery from surgery is keeping me home. So I was trying to think of how I could thank them or better yet, tip them.
This is what I posted on my front door. If any of you know Spanish, please feel free to correct mine and I’ll redo the sign. I just used google translate, so who knows what my front door actually says!
The card I have taped to the sign is an Amazon gift card. I hope it’s clear to them what it is and that they can take it.
It’s a “print at home” gift card. I bought 10 of them for starters, and I’m going to put them out one at a time. So the only trick is noticing when one is gone so I can replace it before the next driver arrives with the next package.
With the print-at-home gift cards, you can designate whatever amount you want them to be worth. They are a file that you download, and each one has a unique code inside that can only be used once. I had to be careful to only print each one once. Then they just fold up into a card shape, with the unique code and instructions on the inside.
Here’s the link to buy them. https://smile.amazon.com/dp/B07P76HM3B/ref=s9_acss_bw_cg_gclptcg_2b1_w?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=merchandised-search-4&pf_rd_r=NG3JX2XFACY84Z0C82D1&pf_rd_t=101&pf_rd_p=6b61ab65-7e92-43b7-b085-459660c9cd18&pf_rd_i=2238192011
Here’s what my order looked like:
Then I got an email with a link:
And this is what I got when I clicked on the link in the email:
Then I downloaded them one at a time, and printed and folded each one.
I just put the first one out today, so I don’t know if it will work or not. The delivery drivers are in such a rush, they may not notice. If no one takes it, I may have to make another sign that says, “You can have this gift card! Please take it! Yes, it’s for you!”
Our house is fine and the plants are alive, thanks to John’s friend who watered them 🙂
Here’s my “new” view, from my new spot on the couch. It beats the view of the back of the van! That big cycad (the thing that is in a huge pot that looks like a dwarf palm tree) is going back outside soon. It’s not really an indoor plant, but New Mexico winters get pretty cold. It’s on rollers, because yeah, it’s too heavy to move otherwise. And that nice big screen TV is sort of wasted on me. I don’t actually watch TV, although maybe I should learn to like it. But weather permitting, I hope to spend most of this spring & summer in the backyard.
My Japanese maple on the front porch is alive and putting out new little leaves!
And the pear tree we planted in the backyard last fall is alive and blooming!
We planted a bunch of new little trees when we moved in for additional privacy from that house above us. And soon the big white birch will leaf out too.
Some of you have expressed curiosity about our van and surprise about how we’re able to make such good time driving across the country. Well, it’s thanks to John and our camper van!
The front of the van has two seats – driver and passenger. Behind the seats is a curtain. Behind that, along the wall behind the driver’s seat, is a bench with a mattress. That’s where I’m sitting, with my back against pillows against a metal rail. I’m riding backwards, directly behind John, back to back.
I wear a seatbelt that John installed. I’m not sure if the seatbelt meets all regulations, but I feel fairly safe back here. In a sudden deceleration, I would just be pushed backwards against the rail between me and the back of John’s seat. The seatbelt is mainly to keep me from rolling off the bench, onto the floor.
Luckily I do not tend to get motion sickness, so I’m fine riding backwards and reading or using my computer. Typically I’d sit in the passenger seat, (and also I’d switch off driving with John), but post-surgery I’m more comfortable on the bench in the back.
At the base of my 6’ long bench, down past my feet, just inside the back door is a toilet. There are curtains that pull across the back windows so the interior of the van is entirely private. There’s also a curtain between the foot of the bed and the toilet, but frankly, we never bother with that one, lol. John also made custom fitting shades for all the front cab windows, which we put up at night. When the shades are up we don’t need to pull the interior curtain between the van and the cab.
Across from the bench and toilet, along the wall behind the passenger seat, there’s a sink, counter, cooler, microwave, and air conditioner. The sink is connected to a big jug of fresh water with a pump, and drains to a big jug for gray water. We also have shelving above, for luggage and dry goods. There’s a nice fan in the roof that vents out, between the two solar panels. The air conditioner also has a fan that vents out a wheel well, and the toilet also has a fan that vents out the wheel well on the other side.
We use the sink water sparingly, but have no problem going for several days without a refill. The toilet can hold enough effluent for several days without dumping and does so admirably, with little or no odor. We have not had to empty the toilet on this trip, and can wait to do so after we get home.
The toilet is a different design than is typically used for RV’s. It’s more commonly used for off-grid cabins and things. It’s an amazing toilet, I think I’ve blogged about it before. (For more info, google Nature’s Head Compositing Toilet.) Here’s a previous post of mine about the van, and here’s one with a lot of detail about the toilet. (Despite the title, it does not contain pictures of poop, lol.)
The various pumps and fans and coolers and kitchen appliances are all powered by two solar panels on the roof, connected to a bank of batteries under the bench. We have 600 lbs of batteries down there, which equates to a good amount of power. Our internal power system, from the solar panels, has nothing to do with the van’s engine system. The van has a conventional gas-powered engine. It’s just all our interior amenities (microwave, etc.) powered by solar.
The van itself is a 2012 Nissan NV2500 cargo van, the tall
version. It is tall enough inside that John and I can both stand up without
stooping. This makes it very comfortable, even though the van chassis is only
as big as a full-sized pickup. That makes it really easy to drive, including
out on forest service roads (which is our preference, of course, not this
cross-country shit).
Here is my view from my back-facing seat.
At night we can extend the sleeping bench across the entire floor space, allowing room for John and I both to sleep. I lay with my head behind the driver’s seat – exactly where I sit during the day. John lays with his head behind the passenger seat and his feet angled toward mine, because the sink is where his feet would be if he slept exactly parallel to me. We sleep in a V shape, with our feet together and more space between our heads. It’s plenty of space for us; definitely not a king sized bed, but more than we have in our tent when we’re backpacking.
In the morning, John gets up, folds his half of the bed away, gives me my morning medical shot, gets into the driver’s seat and starts driving. I get up somewhat later, and stumble around trying to accomplish basic personal hygiene and get a bit of breakfast in a moving van.
I’m very lucky it’s been 3 weeks since the surgery. Even one week ago I would not have been able to handle moving around in the van. I just didn’t have the mobility. I couldn’t bend down or twist or use my abdominal muscles at all. I still can’t fully stand up straight or easily reach down to the floor. And I can’t sit upright without being propped up. So I just recline back there while John does all the work.
John listens to books on tape and just drives & drives.
He only stops to get gas, and occasionally to eat or use the toilet. We are
eating food we have in coolers in the van, and not going to stores or restaurants.
Our only physical contact with the outside world is when John touches the gas
pumps, or pays freeway tolls. My sister called the van our own private
apocalypse capsule.
We bought the van used a couple of years ago, for a very modest amount compared to fancy custom Sprinter vans, which can cost as much as a small house. Our van cost $23,000. The previous owner was living in it rather than traveling, so it didn’t have a ton of mileage.
We are the third owners. The first owners used it for some sort of small business – you know, like a plumber’s van or something like that. I don’t know what kind of business it was. I think it might have been an art gallery. And I don’t know why they bought a brand new van and then sold it fairly soon afterwards. Maybe their company didn’t do well.
The second owner did the majority of the camper conversion. He’s the one who installed the solar panels, bank of batteries, sink and counter, and the main section of the sleeping bench. Then John installed the toilet, the air conditioner, the bench extender and a variety of other improvements including additional shelving & lighting.
We’ll be home soon. And here’s the burning question – how much toilet paper do I have?!? LOL! I don’t know! I don’t remember. I also don’t remember the current state of our dry goods, cold medicines, etc. I’m really hoping I have some more Tylenol sitting around somewhere because that’s what I’m using for surgery pain, and let me tell you, I need it.
Back in January I was humming along, minding my own business, la, la, la, when suddenly my New Year’s resolution colonoscopy led to an abrupt cancer diagnosis and before we knew it, we were flying off to Boston for treatment. This was long before the coronavirus had caught anyone’s attention. I did not think to myself, “Huh, I should stock up on TP before I fly to Boston for cancer surgery.” Nope, never crossed my mind.
Hi, just a quick note to let you all know that I’m feeling a lot better today than yesterday. Life always seems brighter without a stomach ache. My stomach aches are just going to come and go for awhile. There will be good days and bad days.
We also slept much better last night than the first night, even though last night we had pouring rain, thunder, lightening, and strong winds shaking the parked van. The previous night our parking spot was barely off the freeway and the traffic just bore down on us. I’ll take thunder and lightening over traffic any day.
We are on the third day of driving home (second full day of driving). Yesterday we had rain; today is dry but windy. This afternoon there’s even been a bit of sunshine. John continues to keep plugging along, doing all the driving (typically we’d switch off, but I’m not up for driving yet). We should be home tomorrow.
I’m curious to see our house. It’s been almost 2 months since we left. John has a friend who has checked on it for us a few times, so we’re hoping for the best.
Thanks for the condolences after my sad and sorry post
yesterday! We’re going to be ok!
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