March 18 update

I am exhausted. And we haven’t even really begun yet. Yesterday Eirik and I spent the whole day at Dartmouth for diagnostic testing and meeting doctors. We started out with an echocardiogram, where they used ultrasound to study his heart. The technician took about 90 pictures and videos of his heart. Some of them were creepy, and reminded me of sci-fi alien mouths as the valves opened and closed while pumping his blood. It was dim in the room, and I nearly took a nap. That lasted a half hour.

Next up was to follow up with the surgeon. Dr. Chatoorgoon explained that Eirik will need a port, which is a type of permanent IV, in his shoulder for his chemo treatments. If they can do an inpatient procedure (where he spends the night at the hospital), he will also get his first round of chemo at the same time. If it has to be outpatient, then the chemo will be scheduled separately. I signed the consent form for that surgery. He asked if I had any questions for him, and most of my questions are treatment related, but I did have a couple that he could answer. This is not a solid tumor cancer, which was a term that I had seen on some websites, and as for being a metastatic cancer, that was a little trickier, since I guess Hodgkins has its own staging system.

From there we went for a pulmonary function test to check his lungs. This involved a lot of heavy breathing into a machine. “Breathe in, hold it, blow it all out as hard as you can for as long as you can after you are sure there is no more breath in you. The machine analyzes it.” He needed to have two matching results, which took four attempts. He saw a treadmill in the corner of the room and really wanted to use it, but the tech said no. He did get to bring home the nose plug, though, which vaguely resembles a padded clothespin. This adds to his collection of a paper surgery hat, and the oxygen mask from his first surgery as well. The older technician was obsessed with asking me questions about how remote schooling was going to work. I had no good answers for him because I didn’t know myself, but he kept pushing and I kept saying, “I don’t know. I just don’t know. I’m sure they will figure something out.” Apparently we were the first school age family he had seen all week. He also went on to gripe about how technology is destroying families today, and he knew young parents who spend their whole weekends on their computers playing games while their toddler runs around unsupervised and his friend (the grandmother of the toddler in question) goes to take the baby out for fresh air that she otherwise wouldn’t get apparently. I suddenly was very conscious of being on and off my phone trying to manage emails from a pool of up to about 20 teachers while still keeping Eirik on schedule for his appointments there at the hospital. The socially oppressed woman in me tuned out the ranting in the hopes he would shut up about it.

With two of three diagnostics done, we went to meet the oncologist, Dr. Kim. She is a lovely lady. She explained about the process in general, little of which I can remember now due to information overload. She also gave me a three-ring binder that we will bring to all of his visits. The social worker Sally gave me a folder stuffed full of resources for families. I have not had time or energy to go through it all. She told me that I have been in no way overreacting to the diagnosis given the pandemic, and gave me a copy of the letter they recently sent out to all of the cancer patients that basically instructed them all to completely isolate themselves since they have no immune systems. I asked how chemo will work once all the hospitals are overworked. She told me that his chemo will be outpatient, so he won’t need a bed and his treatment should not be interrupted. Because we are so rural, and they draw patients from all of NH, VT, and parts of ME, there is no in-person support group for Eirik or for us. She said there are online options, but I haven’t taken time to hunt them down yet. I will ask for help with that at the next visit. Dr. Kim also asked about his dentistry. Apparently, he should not e going to the dentist during chemo and she asked me to reschedule his cleaning. When I tried this morning, I found that the dentist is closed for the next three weeks minimum, so I left a message for her relaying that information. Eirik asked about hair loss, and she said that some lucky patients don’t lose their hair. Also, that patients usually do NOT lose their eyebrows, as I had thought. She also assured him that he is highly unlikely to end up looking like Deadpool. Having never seen that movie, I don’t know what he is picturing. I know that he saw it at his dad’s when he was nine, so maybe his impressions were more scary since he was really too young for the movie then. During this visit, they also inserted an IV into his elbow and drew some blood for labwork before sending us off for a PET scan.

We arrived at Radiology and Eirik got pumped full of radioactive sugar. That was a little tricky because the IV got kinked, so they had to adjust it, but finally he was settled in to let it travel throughout his body. He was instructed to lie still and be quiet and not talk, but that was really hard for him. He was running out of patience by now, and understandably so. When it was time to scan him, they took him to the bathroom first. He noticed that the bathroom said, “Radioactive,” and the nurse said, “So are you.” The scan didn’t take as long as the waiting did, and we were finally ready to head home.

As we got in the elevator to head up to the parking garage, there were another woman and man in there already. She said to him, “They wouldn’t test me because I don’t have enough symptoms, even with the cough.” No mask on her, no way to get ten feet from her in the elevator. Now, I don’t know what test she was denied, but of course, my brain jumped to Covid. Upon first entering the hospital at the main door, everyone was being “screened”, meaning asked if they had symptoms or had traveled or been exposed to any known or suspected cases. We were asked this at every appointment we were at, for a total of six times. So that was disturbing.

Today I got a call to schedule his port surgery. They are canceling all elective surgeries, but his is considered non-elective. I find out tomorrow if it is inpatient or outpatient. We will go full isolation starting on Sunday, with only my husband going to work because he has no paid time off left, and my daughter going to work at the nursing home to make sure everyone there is fed. I suspect that, relatively speaking, she has fairly high seniority in the kitchen, having been there for a year and a half and seeing a complete change of staff. The only other contacts we will have will be the two small children I babysit for 3-6 hours a week so their dad can go to work. I will make weekly trips to Keene to pick up whatever we need and for necessary appointments, which are few. I will see if it would be practical to do my therapy via phone call, because I need therapy right now.

As I was sitting here writing, I received a call from the oncologist. The good news is that his disease is stage 2. He has swelling on both sides of his neck, and some in his chest. His full diagnosis is of Classical Hodgkins Lymphoma, subtype is Nodular Sclerosis, which is the most common of the four subtypes and very treatable. The treatment will be chemotherapy that is referred to as ABVD, and they expect 4-6 cycles of treatment, with each cycle lasting 3-4 weeks each. The number and length of each one will depend on how quickly his body responds.

Yesterday before we left, Covid numbers in NH were 17, I think. As of the time I am writing this (2:30pm) they are up to 26. We picked up all the kids’ school stuff from the schools. At the high school, we made appointments and went to the lobby, where the teachers had their supplies arranged on tables. There were a couple staff to collect the proper supplies for each student. At the primary school, we were to drive up like for student pick up and drop off, and stay in the car. The staff brought out the packages to us. At the middle school, there was a route and it was also by appointment. Empty the lockers first, sign out a Chromebook, empty the gym locker if needed, and back out again.

The high schoolers are expected to log into their online classrooms every day during their regular class time for attendance. Personally, I think that is ludicrous. Everything is stressful enough, even for those who don’t have new cancer diagnoses in their homes. Let the kids check in and work when they are most mentally and emotionally prepared to do so. If that means sleeping in every day and a study binge on weekends, fine. The middle school is much more realistic, partly because the students’ schedules are different every day. They just want to hear from the kids every day or two. The primary school doesn’t seem to have an attendance policy right now. They sent home a pile of books and worksheets to do on our own schedule.

So there we go for now. We await surgery in two more days. I will see if Eirik is interested in making a video with his thoughts on this for you. No promises, though.