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.