First Day: So Far So Good

Last night we were trying to finish up all the farm details, and we really didn't start to think about today's activities until about 10:30.  I only have to think about two days at a time, but Jon is going to be in Baltimore for at least 10 days, maybe more. It's a bit easier now that he doesn't really eat anything but the occasional bottle of Boost. Last time we packed all this kitchen stuff. This time it was just two boxes of Boost and a lot of ginger ale, and some hot yucky supplies for me.

We loaded up at 6 AM and this time the trip was fast (yesterday it took us almost two hours to get up here). We arrived with lots of extra time so I said we should see if we could check into Hackerman (the "patient pavilion" that is adjacent to the hospital).  The apartment was ready, the registration lady was unusually nice, and we were all moved in by 7:45. This time our apartment is in a great location -- nothing to do with the view, but it is literally a five minute walk from here to the elevators that take us to the IPOP.  We are on the second floor, just a few steps from the garage. This saves so much elevator waiting, or stair time, just being so close to the exit. I saw the benefits instantly.

Everything about this is so familiar that it feels comforting. The big blocky furniture that is essentially boards with washable fabric on it. The color scheme (brown, green and yellow), the appliances, the institutional but friendly hallways. But this time we are on the floor with a community kitchen that is open, with lots of space and real kitchen equipment. Last time we were here it was closed for Covid.

Anyway, we got to the IPOP right on time and were greeted warmly by the nurse. It has been notable how little introductory information we have received this time, unless Jon is getting a lot of emails that he is not reading. We have had no orientation at all. Luckily we already have been through this twice, so perhaps that is the reason. They took his vitals, sent a lot of blood to the lab to make sure all his organs can tolerate this, and then explained what we should expect in the next 10 days or so.

Jon is getting "step-up" doses of Talquetamab. This is different from what was discussed a month ago. This drug, like the Teclistamab, is a "bi-specific" med which brings together the T-cells and the myeloma cells.  Then the T-cells learn to kill the myeloma cells and they teach each other to go on a rampage, killing myeloma cells. This can be hard on a body. You might get Cytokine Release Syndrome (CRS) which has all kinds of symptoms like fever, difficulty breathing, dizziness, confusion, headache. You can also get neurological problems, including disorientation, seizures, lethargy, rigid muscles, muscle weakness. The list goes on and on. The reason he needs a caregiver with him all the time is we are supposed to notice if he starts to act weird, or walk funny, or won't wake up.  For sure he will lose even more of his taste buds and his skin is likely to get all dry and his mouth will get sores because the T-cells will also kill off those fast-growing cells (mucous membranes and skin).

Jon took a simple test to see if he knows what day it is, etc. and they also made him give them a handwriting sample. He will repeat this sample every day as a way for them to track his brain and motor function. I helped him construct a sentence that he can write every day: "I am glad to be here and I hope this works."  They had suggested that he write "Hana is amazing" but that one seemed a little out of character.

The reason they chose this toxic drug (they are all toxic) is that this particular one won't get in the way of choosing to go to CAR-T later.  The Teclistamab uses the same receptors (I do not really understand these words) and so there would have to be a long pause in order to go to CAR-T. Also, the Nurse Practitioner said today that she just read a study that showed that Talquetamab is more effective than Teclistamab.

So, he had one small dose today. Then they watch him for a few days. Then he gets a bigger dose on Day 4.  More watching. Usually this is the time when people start to demonstrate side effects. Then more on Day 7.  More side effects, maybe.  Then Day 10 he gets the full dose.  And if after two days, nothing horrible has happened, he gets to go home.

After he fell asleep with all the Benadryl, I went out to check out all the familiar places. I walked to the pool but found that they are doing a huge renovation (YAY!) and there is no pool.  I walked through a farmers market that was really a lunch destination with a pizza oven, grills, Thai food, and long lines of people in scrubs, waiting for lunch.  There were about three farmers with kale and scapes, reading books. It was not a farmers market. Excuse me very much.

Then I went to Aldi and went shopping for my own supplies. I never shop. I picked out only things that I can eat in a kitchen with nothing but a microwave and a toaster oven. It was entertaining. I got some green beans and cooked them in the microwave. 

Jon is in unusually good spirits today. It feels good to be doing something about this cancer again, and so far there are no ill effects because this is the easiest day. He even ate some green beans, which is notable. 

I am actually delighted to be here, which is not what I thought I would say. I am glad that Jon is getting a treatment, maybe it will work, I am glad to be back at Hopkins (weird but true, very safe and comforting), and I am sorry to be missing all the farm stuff but everyone is so capable that they really do not even notice my absence. I am "working remotely," sending lists and questions and getting reports. We have had a lot of practice at this over the years, especially in the months between February and April. This is the first time we have had to be absent in June.