Category: 2020

Driving home (Pursued by Pandemic, Post 1)

Well, John and I are on our massive drive across the country trying to get home before this coronavirus gets any worse. I emailed my medical records to my primary care doctor in Albuquerque on Monday, and called them on Tuesday, but I haven’t heard anything back yet and now it’s late in the day on Thursday. I need to be assigned to an oncologist asap.

We left Boston around 5pm eastern time yesterday, Wednesday, and made it as far as a rest stop in upstate New York. The restrooms were closed, but they left the parking lot open for the trucks to park overnight. I think most of the big semi trucks have some basic facilities in their cabs.

So we did the same thing – parked the van and closed our curtains, ate some of the food we brought, set up our bed and fell asleep. It was loud sleeping that close to the freeway, but I don’t think I would have minded except I’ve been having bowel issues from the colorectal surgery. Nothing unexpected I don’t think, but a lot of discomfort and nuisance. Actually, I’m miserable. This trip would have been nearly impossible if it weren’t for the toilet and sink in our camper van. But even so, it’s been rough. I’m mean, I’m extremely grateful I didn’t have to have a colostomy bag, but the current situation is hardly an improvement. Presumably it will get better eventually.

Today, we’ve been driving across Pennsylvania and Ohio. John is doing all the driving. I’m feeling worse, if anything. I haven’t felt this bad since I was still in the hospital those first several days after the surgery. John is patient and tenacious, driving steadily through the rain.

I haven’t left the van since we started 24 hours ago, and he hasn’t either except to pump gas. He is very careful when he pumps gas – wearing rubber gloves and washing his hands afterwards. We don’t want me to have to try to fight off the coronavirus in my current state.

Most of the rest stops are fully closed, with the parking lots blocked off. So I’m not sure where we’re going to park the van to sleep tonight. I’ve heard that Walmart often lets you park in the back sections of their lots, but who knows now. Everything is changing so fast.

Of course if we were on vacation we would stay in state parks or we would have researched off-road places in the national forests. But right now we’re just trying to get across the country as fast as possible.

Some of my friends and family members are in regions of the country where they are under shelter-in-place orders. One thing that I haven’t seen in the copious amounts of news stories about the coronavirus is the issue of different members of the household taking self-isolation directives more or less seriously.

The press has mentioned that younger people seem to be taking it less seriously, and in one article I saw, the author tried to make an argument that it split down party lines (but I don’t think the data they were citing backed up their thesis very well). In my limited, not-a-significant-sample experience, it isn’t by specifically by age or politics. But situations are going to vary, and that does sort by age to some extent. John and I are trying to be super careful because of my cancer, and certainly there are more old people in our situation than young ones. Plus, some people simply have a much higher threshold for some types of risks than others do.

But back to the issue of large families, roommates, etc., not interpreting the shelter-in-place orders similarly – even if the majority of the household is sheltering in place, it only takes one person to not take it seriously, and the entire household is basically wide open and exposed and exposing others.

Most news articles seem to imagine that households consist either of just one single person, or a couple with small children. Hello. Household units are so very much more complicated than that, often with unrelated adults and different generations of adults under the same roof. If a household of 4 adults has 3 adults sheltering in place, and one friendly Joe coming in and out and having friends and family over, then the efforts of the other 3 are essentially wasted and we might as well give up and let this thing overwhelm our country.

Ok, I’ve been ranting a lot lately. It’s a difficult time for all of us. Earlier today I was looking for a phone app where I could just look at pictures of puppies for adoption. No, of course I’m not getting another dog! I’m not even well enough to take care of the dogs I have. I just wanted to look at the pictures because I’m too distraught to focus on anything harder than puppy pictures.

But all the apps wanted to know my location and it was just too much. Forget location! I don’t even know where I am right now. Ohio? Indiana? I just wanted the apps to show me puppy pictures from everywhere. I should have just randomly picked some large city somewhere, but everything is so mysteriously connected nowadays that next thing I know, my google maps will start defaulting to LA or something, which has happened to me before. So puppy pictures was my failed attempt at doing something light and happy today.

Speaking of puppies, we’ve asked Monica if she can watch our dogs for a little while longer. I am just not healthy enough yet. I can barely hobble-wobble, speed-stumble the 5 feet to the toilet, much less chase after 3 dogs. And the instant I try to sit down somewhere they’d be jumping onto my lap, which has numerous extremely painful incisions. The thought of a 20 lb dog launching itself onto my stomach is enough to make me want to pass out just from thinking about it. Plus, dogs complicate my relationship with John because we don’t do dogs the same way. And right now, we don’t need any more stressors. Life has been very difficult and he’s been very supportive.

At Emily’s house John had installed a strap to help me pull myself out of the chair, and both a rail and a strap so I could get out of bed.

He also installed a walker-type apparatus that goes on both sides of the toilet to give support getting on and off the toilet.

The van is small enough I mostly have hand-holds, although it’s complicated by the fact that the van is in nearly constant motion.

We stopped early tonight; it’s only about 7:30, but we found a good place to stop for the night. It’s a rest stop with lots of truck parking, significantly further back from the freeway than the one last night.

The back lot is still empty, but it’s early yet. Not even dark. The trucks will be coming in and out all night.

As soon as we got parked and settled the rain picked back up again. It’s pouring now. I’m so glad we’re stopped for the night. Here’s hoping for a better tomorrow.

Pink Thinking

So what did you think of my total rant yesterday, huh? LOL. It was inspired by my cancer book. No, seriously. The book says:

“Pink thinking is the common, but mistaken, expectation that suffering people need to think positively and reject any negative feelings…Pink thinking denies the reality of an individual’s suffering and glosses over the hurting person’s pain. Putting pressure on yourself to feel better…(‘I need to stay positive‘)…will probably make you feel worse, and can wear yourself out physically and emotionally…if you’re not having a good day, don’t pressure yourself into faking happiness or pretending everything’s fine. An important reason to allow yourself to feel bad is that when you do, you may actually start to feel a bit better.”*

Yep! And today I do feel a bit better. I recognize that not everyone wants to deal with me ranting. That’s why this blog is useful – if you don’t want to hear it, you don’t have to read it 🙂

I’m still not feeling very well physically, but today I’m a bit improved mentally. That’s going to just come and go – good days and bad days. Today I had a good chat with a client. And John managed to find some groceries for us and for Emily’s family. We are still in Boston, but we plan to start home on Thursday. Meanwhile, John is taking some time off work to get the van ready for the cross-country trip.

I wouldn’t have left Boston this soon – I don’t feel ready and it’s not ideal. But with the coronavirus, we need to be home. So…I’m getting my medical documents transferred to Albuquerque and hoping to get a new medical team together there soon. Ideally I should start chemo by the end of this month.

My new cancer book, that I quoted earlier, was a gift from a stranger. I had signed up for a counseling course (sometimes I go to workshops that are coaching related, for continuing education, to keep my skills up to date). I signed up before I knew I had cancer. When I called to cancel my enrollment, I explained why (going to Boston for cancer surgery). The workshop organizer asked me to give her my Boston address so she could send me the materials for the workshop I’ll be missing.

When the materials came, I discovered they really weren’t much of anything – just a few brochures. But she had also enclosed a book entitled, “Cancer, Now What?” I think her whole reason for sending me “workshop materials” was a ruse to get my address in order to send me the book. Wasn’t that nice of her? It’s a very practical and useful book.

It would actually have been even more useful to read the book before my diagnosis, because it starts off talking about the initial shock of the diagnosis, and how to let your friends and family know about your diagnosis, and things I’ve already had to deal with. But who reads cancer books before they have a diagnosis? I think for most people a cancer diagnosis is a completely unexpected shock, at least it was for me.

But there’s still plenty of great info in the book that will be useful for my next stage – chemo. However, some of the advice, like ways to continue to do some of the things you enjoyed doing before getting cancer, aren’t practical right now. I don’t suppose anyone’s written a book called, “How to have cancer during a pandemic” But we are all struggling with the sudden changes in our lives due the the coronavirus.

*CANCER – Now What? Taking Action, Finding Hope, and navigating the journey ahead. A practical guide for those with cancer and their loved ones. By Kenneth C. Haugk, Ph.D.

What is happening to 2020?

Life is rapidly getting surreal. It was bad enough to be abruptly diagnosed with cancer. Even though I’ve already had surgery, I’m still not fully getting it. I have cancer? Cancer is something that happens to other people; your neighbor’s mom or your friend’s coworker’s spouse. But me? How is that possible? Cancer. Surgery. Chemo.

And now this pandemic. People are losing their jobs. People are running out of money. Food and supplies are becoming hard to obtain. Travel is shutting down. Businesses are closing. The entire education and service sectors are hobbled. The impacts are everywhere. The hospitals will soon be overwhelmed.

This morning I asked John if he could please go buy us eggs and cheese today. He said, “What kind of cheese?” I said, “Just something. Anything you can find.” He said, “It’s that bad?” Yes, it’s that bad. I didn’t even ask for bread because I don’t want him to spend all day on a wild goose chase.

(Picture from Laura)

I wonder what’s with that one remaining, beautiful-looking organic whole grain loaf? Is something wrong with it? Or were people just being polite; trained since childhood to not take the very last one?

It’s ridiculously ironic for me, because this was supposed to be the year that my life was going to be easier. My life has generally been somewhat difficult. Never horrendous. But my childhood was a challenge and then I was a single mom juggling work and school. Then the kids grew older and I juggled two careers – environmental science and life coaching. Plus multiple divorces and dozens of moves and job changes. And migraines; lots and lots of migraines.

It was only the last couple of years things started getting easier. First my migraines improved a couple of years ago. Then I quit my job last year. We were still busy at first – moving and getting the old house remodeled and sold and the new one set up.

But for the first time in my life, I was looking forward to having nothing I actually had to do. I planned to keep working part-time with a few clients, but otherwise 2020 loomed open, expansive, inviting. I started planning trips to see everyone. Southern California to see my good friend, and northern California to see my daughter in February, Florida with my sister in March, Texas to see my in-laws in March, then John’s been wanting to go to Alaska and I figured also camping in Idaho with my son this summer…I had all these wonderful plans.

It was to be my first year of being semi-mostly-retired. I almost feel, in some weird superstitious way, like I brought this all onto myself. My hubris? My selfishness? My shallowness? My optimism? …of planning a year of nothing but fun. Not that I actually think it’s my fault.

But it can’t just be crazy coincidence, can it, God? Right? Am I right? God, yeah, I’m talking to you. It’s your ass I’m talking to. The first year of my life that I’m not either in school or getting married or having kids or getting divorced, going back to school, looking for jobs, moving, getting married (again) starting a business, getting divorced (again), going back to school (again), looking for more jobs (again), getting married (again) moving (again), buying houses, selling houses, remodeling houses, looking for more jobs, moving for the 26th time (no exaggeration).

The first year in my life that I’ve had simply nothing difficult planned except a few fun trips…and now STAGE 3 CANCER and WORLD PANDEMIC?! Seriously? Not one but both? At the same time?! Are you fucking kidding me?

I don’t know what I’d do without John

John is gone this weekend and we all miss him. He flew to Houston to get our camper van from Monica’s house to bring it up here. We’ve decided to go back to Albuquerque for the chemo treatment and I’m not well enough to be able to fly. So we’re going to transport me in the van. The van contains a bed, sink, and toilet, which I currently need to have readily available until I’m feeling better.

Meanwhile, Emily is having to give me my daily shot because John usually does it, and I’m too much of a wuss to do it myself. The shot is a blood thinner so I don’t get post-surgery clots.

Amazon grocery delivery is no longer working, so now I’m like, hmmm, maybe John can go to the grocery store when he’s back in a couple of days? Not to mention the work he’s planning to do to get the van ready for the big trip to Albuquerque. He’s going to make some alterations to it, including building a seating area in the back section.

He’s going to be gone for a couple of more days, so I’m waiting to see what all comes up while he’s gone (knock on wood). Last time he was gone the furnace started dripping water (Yes, I know, what water? How does a furnace even leak?) It was an associated humidifier. So we just put towels down until John got back and could fix it a couple days later.

John’s done a lot of other things around the house too, like installing new light fixtures and things. I’m glad, it makes me feel like we’re less burdensome on my sister. We’ve been here since February 2!

This morning I heard little voices on the stairs calling down, “Uncle John?! Uncle John?!” and in the background I could hear their dad saying, “Come on, get your coat on. Where’s your shoes? Let’s go.” Bryan is great about taking the girls on fun adventures on the weekends, and they like John to come along too. Funny, I never heard either of them calling, “Aunt Kristina? Aunt Kristina?” Lol. I’m not as good at playing with little kids is John is. My kids were almost grown up by the time I met him, and with no grandkids, it’s a very underutilized skill of his!

Finally, a coherent article about the coronavirus

There are tons and tons of shallow, repetitive and mostly useless news stories out there about the coronavirus. This article is far better than anything I’ve seen. It’s very informative. Excellent data. (Thanks to Laura for sending me the link).

https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca

Bottom line – isolate yourself. And if you’re not worried about your own health because you are young and strong, then do it for everyone else.

Bad news

The cancer is stage 3 and I will need chemotherapy. We were hoping for stage 2, so it’s really disappointing.

I don’t have the pathology report in front of me yet. Here’s the little bit I can remember from the doctor’s brief call just now: “Moderately differentiated, 1 lymph node, invasion along nerves and blood vessels, stage 3 plus high risk features, absolutely need chemo.”

We’re going to come back to Albuquerque for the chemo. I think the treatment takes about 6 months. I’ll write more later. 🙁

Checking in

Just want to let everyone know I’m doing fine. I’m slowly recovering from surgery. It’s very slow.

We are still waiting for the pathology report. We had hoped to hear on Monday and now it’s Thursday night. We’re not sure why it’s taking so long. Perhaps the lab is extra busy due to the coronavirus?

When they did my surgery, they removed the 15 lymph nodes closest to the cancerous site. We are waiting to hear the condition of those lymph nodes. It could range from 1) normal, 2) swollen because they were working hard to fight the cancer, 3) contain pre-cancerous cellular abnormalities, or 4) contain cancer.

We’ve been preparing ourselves for the likelihood of chemo. But if the lymph nodes are all perfectly normal, the doctors might say we don’t need to do chemo. It would sure be nice to just know.

I hope you’re all doing ok with the coronavirus so far. In Boston we have about 100 confirmed cases, but a real shortage of tests, so it’s impossible to know. Lots of schools are closed and most people who can are working from home. The stores have run out of cold medicines and toilet paper. I think that’s how it is most places.

John happened to be at the Home Depot (John is always at Home Depot) and he thought to look for toilet paper there and found some, which was good because we were running low. He only bought one packet of the size we always buy, which is enough. I don’t think it’s fair or reasonable for people to be hoarding items, although I understand everyone is in different situations.

I’m taking fairly large doses of Tylenol for my post-surgery pain, so I’m grateful my bottle is big enough to last a little while. I would be out of my mind without it. And I can’t take aspirin because I’m on a blood thinner to prevent post-surgical blood clots. The blood thinner is a daily shot – yuck! John gives it to me, which is good because I wouldn’t have an easy time giving it to myself. I was also given a prescription painkiller, but I got off it as soon as I could – within a couple of days of getting home.

I’ve been getting my groceries delivered because I’m not well enough to go to stores. I can barely walk – just a slow bent shuffle and not for very far or very long. The grocery delivery has been wonderful, but today the system got overwhelmed by people who are trying to stay home. So no deliveries available in our area. I hope the system rebounds soon. I’m grateful I have John who can go to the store for me if needed.

On a more cheerful note, here’s Emily with Phoebe. She hardly looks like a newborn anymore!

And here’s Daphne and Thea. Mostly it’s been gray and cold, but on Monday we had an unusually warm spring day. The first semi-warm day of the year. It was lovely.

I want to thank you all for your continued thoughts, prayers, love, emails, texts, etc., I really appreciate all of it!

Chemo and the risk of COVID-19

It is my best guess (although I’m not an epidemiologist or anything), that most of us are going to end up being exposed to COVID-19 and most of us are going to be fine.

Right now Laura and Alex are in one of the early US epicenters, in Santa Clara, and I’m not too worried about them. They’re young with healthy immune systems. They’re likely going to get exposed, and they should have no issues fighting it off. They may not ever even realize they had it.

The people who need to be taking protective measures are the same set of people who are susceptible to pneumonia. The old, those with respiratory issues, and those with compromised immune systems.

If you are in one of those groups, you should (in my opinion) seriously think about they ways in which you come into contact with the outside world. Not only should you self-isolate at home as much as possible, but you should also think about other people in your household bringing it home.

If other people in your household are out and about, they’re going to get exposed. If they’re healthy, it might not hurt them much. But they’re going to bring it into your home, likely before they even realize they’re sick.

Somehow we need to isolate those who are old, have respiratory issues or compromised immune systems, while still allowing the healthy majority to continue to keep the world functioning. Because obviously, we can’t all stay home. Millions of people have critical jobs that can’t be done from home.

Doctors, nurses, police, first responders of all kinds; we cannot survive without these people working. Also critical is anyone related to the production and distribution of food, medicine, and other critical goods. Our nationwide food network is incredibly complex and not very redundant. And we can’t keep it operating from home.

I’m expecting to start chemo in a month. This is presumably going to compromise my immune system, so I’ll be in that group of people at risk. My immune system is already stressed by the cancer and the surgery, but the chemo would be a lot worse.

Originally, John and I were planning on staying in Boston for all of my treatment, including the chemo. John would work from home in Boston much of the time, and fly to meetings when needed. But due to the coronavirus, we are rethinking the wisdom of having him flying regularly. It seems like he would be likely to bring the virus home from a business trip.

Also my sister is an ER doctor, so she will likely be exposed when she goes back to work in a couple of weeks after her maternity leave. There’s a good chance she could bring the virus back to the house. Her family should be fine – thank goodness young children seem to be doing well with this illness. But John and I are now reconsidering our original intent to stay with her in Boston for my treatment.

We could go back to Albuquerque. But I don’t think Albuquerque is going to be any better than Boston if John goes into work each day. Right now, in Boston, he’s working from home. But I’m pretty sure that if he goes back to Albuquerque and goes into work every day, I’m just as likely to be exposed as if I stay in Boston.

Another option is for me to stay with my mother-in-law in Houston. But if I were to get my treatment in Houston, John would still need to fly for work sometimes. So Albuquerque is probably our best bet, and John would just need to be vigilant about working from home as much as possible. We’ve also invited Monica to come up to Albuquerque with us if she wants to. I would enjoy the company – I’m not looking forward to being completely isolated with only John around, lol. Although he’s been fantastic – he’s been waiting on me hand and foot. He’s extremely patient and attentive and is doing everything for me.

Two of the big advantages of being in Boston is having John working from home, and having my sister and her family around. It’s really an ideal situation here. John and I have an in-law apartment downstairs, so we have some privacy and so does Emily and her family. Yet we’re only a staircase away when we do want to interact. I will definitely miss Emily and her family if we go back to Albuquerque for the remainder of my treatment.

The second issue is…how do I even get to Albuquerque? I’ll write more later about the details of surgery and recovery, but for now I’ll just say: I’m doing fine in that I’m recovering as expected and there are no complications. But I’m still very sick. There is no way I could fly on a commercial airplane right now. I also couldn’t easily undertake a road trip in a conventional car.

So we’re considering the camper van. It has a bed, a sink and a toilet – all of which I currently still need at all times, 24-7. The van is in Houston. John would have to go get it and bring it to Boston, which is a 28-hour trip. Then we’d drive from Boston to back Houston. In my current condition, I’m thinking 28 hours of driving would take us 4 days; John is hoping for 3 (he originally thought we could do it 2 days until I was like, uh no, no way).

We would initially go to Houston, pick up the dogs, and Monica too if she wanted, and then continue on to Albuquerque. The camper van currently only seats 2 people up front, but we’re going to get it set up to allow for me to ride safely and comfortably in the back, propped up on the bench (the bed folds down during the day to be a bench). We need to add a railing, a back rest, and a seat belt.

All told, it would take a day for John to fly to Houston, 3 days for John to drive the van to Boston (no, John, you should not do it in 2 days, it isn’t safe), a couple of days to get organized and retrofit the van so I can ride in the back, 3 days to drive back to Houston, a day or two of rest, and one (long) day driving from Houston to Albuquerque.

None of that sounds easy. But I don’t regret coming to Boston for the surgery. Although my hospital stay was less than stellar (it was god-f*cking-awful, more on that another time), I believe my surgeon did a very good job with a rather tricky bit of surgery. My case was complicated by the location of the cancer – it wasn’t just out in the middle of the colon somewhere nice and handy, it was right where the rectum starts, which made the surgery a lot more difficult.

In Boston I was able get into surgery faster than I probably could have in Albuquerque. Also my surgeon had available an advanced robot to help with the surgery, enabling much less incision (laparoscopic surgery). Essentially, several small incisions were made instead of a really big one, and my surgeon worked at a computer screen, controlling the robot, rather than leaning over my abdomen.

On the other hand, we don’t expect the quality of chemo treatment available in Albuquerque to be significantly different than what’s available in Boston. I’m going to miss my sister. If it wasn’t for the coronavirus I’d stay longer, but maybe it’s time to think about heading home.

Back from the hospital

I’m very glad to be out of the hospital and back at Emily’s house. Everything is going well. I’m still very uncomfortable – I can barely move. But I’m making progress.

The hospital stay was miserable, but John was there almost the entire time. At night he slept in a reclining chair next to my bed. He is an excellent nurse and I’m very grateful.

On Monday or Tuesday we should hear the pathology results and then we will plan next steps.

Random thoughts the day before surgery

The last couple of days have been busy with some last-minute coaching calls before I’m officially “out of the office” for awhile. Today there’s nothing planned except my liquid diet and other fun aspects of GI cleanse. LOL. Last night my sister-in-law texted that it sounds awful, but not really. What I’m afraid will be awful is the first few days of recovery after surgery. But we’ll see. Anyway, I feel like I have some time today as I sit around and drink my fluids, so I’m hoping to do some blogging and emailing. Because I do not think I’ll be feeling very well after tomorrow.

I also have most of the day tomorrow to sit around, because my surgery isn’t until late in the afternoon. I’m on clear fluids only today, and then tomorrow I don’t eat or drink anything except 24 ounces of presurgery compex carb drink.

Yesterday afternoon we went in for my pre-op consultation. We were running a touch late, and it made the late afternoon start of the commute traffic even more frustrating than usual. Then on the way home we hit the later commute traffic, which was even worse.

Boston is a nice city but the driving is nuts. The drivers are aggressive. They don’t wait for a gap, they just go anyway. I understand why – if they don’t just go, they’ll never get anywhere because there are never gaps. But still, it’s disorienting when – without any warning – drivers are suddenly darting in front of you or across traffic when there’s seriously no room. They do it really fast with no warning, so it’s like cars coming at you from all directions. And the old roads are narrow and the intersections make no sense.

We’ve borrowed an old car from Emily. It’s a stick shift and I think it needs a new muffler. So we sound like a motorcycle as we’re trying to keep up with the stop and go, tightly packed traffic. Vroom, vroom! But we’re very grateful to have it, otherwise John would want a rental car. But I’m not driving in that traffic. I ever have to go somewhere without John, I’ll just Uber. 

I have my groceries delivered from Whole Foods through https://primenow.amazon.com/. That’s what Emily does and I’ve discovered it’s a good deal. Prices aren’t as ridiculous as I would have thought, and I have Prime, so it’s free delivery with $35 minimum. With groceries, it’s easy to meet the minimum – if I’m a few dollars short I just throw in a chocolate bar! I’m not sure if delivery is available in Albuquerque, and shopping is easy in Albuquerque anyway – the traffic is a piece of cake and the stores are empty compared to here. But delivery is definitely worth it here!

Speaking of getting out and about…I’m a little nervous about the coronavirus coming to the US right when I’m having to do surgery and probably 6 months of chemo. Chemo is really hard on the immune system. I’m very glad I came to Boston for the surgery, but I don’t know where is best to be for the follow-up chemo treatments.