Hold Tight and Pretend It's a Plan

Until today, Jon was still officially a patient in the IPOP, and he was supposed to call them if he had anything to report. Today he had a video call with Dr. Imus, and he is now a Kaiser patient again, with his next treatment scheduled for July 2. Jon reported all of his current symptoms to Dr. Imus. It is a kind of a long list, but nothing is life-threatening or involves his cognitive abilities, thank goodness.  He has a new rash, his taste buds are stuck on Sawdust Mode, and the neuropathy in his feet is getting more noticeable.  But on the plus side, he doesn't have thrush anymore, he feels stronger today than he did just a few days ago, his back was strong enough to stand up long enough to make a big pan of lasagna, and he feels like he is getting better every day. For a few days, it seemed that he was sliding backwards.  He felt like he was falling apart. But now it seems like he is gradually moving forward.  Today I saw Jon smile more than I have seen him smil...

It seems that Jon and Rebecca don't have the gene that drives them to report  even when they think there is no news. This morning, it seemed like no one in the IPOP thought there was anything to say either. After they sent his blood sample to the lab, he waited for a long time for someone to come and tell him he could go home. The nurse told him the Nurse Practitioner would come and make the official call. But after a few hours, she got word that the NP was just too busy and Jon was free to go.  And so, without any fanfare, he walked out of there. Tomorrow he has a video call with the Infectious Diseases doctor and then on Friday he has a call with Dr. Imus.  He hasn't heard anything from Kaiser about any sort of plan, but maybe that has to wait until Dr. Imus catches up. On the way home, they stopped at Attman's Deli (thanks to Nell and Don for the gift, what a good idea) and picked up four huge sandwiches. Alissa was here and we all sat down for a 4:00 meal.  We de...

I figure I should post even though there's very little to say, lest I spark panic due to lack of updates. His heartburn went away, the full dosage of the treatment was given, we were in and out of IPOP in a prompt 6 hours. Dad is gradually feeling more able/willing to eat even though he still can't taste much of anything, so we went out for a perfectly serviceable pizza that didn't quite scratch his itch - he wanted New York style and this was more Neopolitan. But calorically, he's meeting his milestones. No side effects today as of 11pm. If the next 32 hours go the same way, we should be out of here on Monday as expected.

Back to Rebecca, who forgot to post a blog post last night despite assuring Mom I would. In my defense, my initial reasoning was sound - Dad had a slight but increasing fever, and I was waiting to see if it would hit the point that he needed to tell people and have to go in for treatment/observation. We were hoping to avoid that at all costs because we didn't want the last shot delayed. And then by the time we decided just to go to sleep, I'd forgotten, so that was my bad.  Generally no drama here. Dad has pretty bad heartburn this morning, and we don't know if that will disrupt the schedule, but we're hoping not. He's taken some meds for it, so hopefully it'll get better soon. Other than that, not much to say. Long day in the IPOP ahead of us. I'm grateful that these days have both fallen on weekends for me so I don't have to spend 6 hours of my workday balancing a computer on my lap. I'll update with a longer post later, but for now we gotta go.

 Just because Rebecca and Jon were too carried away with other things and forgot about the blog doesn't mean there is anything to worry about. Jon was having a slight fever last night and Rebecca was waiting to see what might come of that, but I haven't heard anything since then so I don't think anything dire happened in the night.  

By now it certainly feels that it will be unlikely that Jon will have any dire side effects. He has only had the mildest of issues, barely worth noting, and possibly connected to all the drugs he gets to tamp down the side effects.  Certainly the difficulty with sleeping is related to the dexamethasone, and we are familiar with that. His visit to the IPOP was routine.  I left him waiting for attention so I could get back to the room for a Zoom meeting. He walked himself home (the protocol is that he always needs to be accompanied, but everyone can see that he doesn't really need company on the 5 minute walk).  We had a lunch date at Bean's house, so we left the premises and went to her cute little 10 foot wide row house in Federal Hill.  Martha had picked up some delicious banh mi and we sat outside on the back deck, under the shade umbrella, and visited for a few hours. We talked about the travel plans that we can all imagine, and got ourselves excited about letting...

Speaking for myself, I had such an interesting day today, from start to finish. And Jon had a good day with no new side effects and more capacity for eating real food.  That's the short version. It took them longer than sometimes to get Jon into the IPOP so we had plenty of time to hang around and think about what we should be doing for the farm (ordering more earmuffs for tractor drivers, for one thing) and for me to get Jon caught up on all the progress.  Then the nurse came in and did the usual tests and the Nurse Practitioner came in to ask and answer more questions. Jon has a new complaint (heartburn) that worries him a little because it reminds him of the first time we were here when he had a hiatal hernia that hurt a lot, so she told him what meds to take and when.  He asked whether there could be a night when he didn't have to have these tubes coming out of his port, and she said that he has to have port access tonight and tomorrow night, sorry, because these are ...

Jon again. Rebecca left and Hana just got here so I guess I am it. With no side-effects, the time in the clinic is fast. Tomorrow is another treatment. That's all there is about that. But we did get to see Grace (Bean) Benton today for lunch. She brought takeout from a restaurant that Alissa raves about. Good food is still kind of lost on me. Eating still doesn't bring me much joy. But seeing Bean was great. Never a lull in the conversation. Lots of connections to be explored.  Tomorrow will be Hana again so you'll get a real report with insight, background, context and analysis.

This is Jon. When I look in the mirror or see a picture of myself all I see is a sick old man. The sick is undeniable, but I'm sure many of you who might be even older than I, do not, and should not, consider yourself old. I guess old is when you find yourself unable to do things you want to do and feel you should be able to do, or are even unable to realize what you are missing out on. Obviously, that starts at about age 18, but I am talking about in important areas: cognitive, mobility, ability to do the basic things: sleep, eat, cook, control your bodily functions, or have a minimum level of stamina to get through the easiest tasks: shopping, climbing stairs, staying awake in the middle of the day. So, presumably because of my disease, I am getting weaker in other areas. and for a while in the past weeks and months, I have felt too frail to get through the day at a minimal level. That, and the seemingly lack of progress towards a new treatment after the doctors had realized they...

Not a lot to say today. Roughly six hours in the IPOP, because the shot can't come until the blood-work clears, and then they have to keep checking his vitals for four hours after that. Still no symptoms, which we're tentatively pleased about unless it means the drug just isn't doing anything. Too soon to say. Another night of bad sleep (decadron), but he ate in the realm of 2000 calories today, so we'll call that one a victory.

Rebecca here, tagging in. I swapped spaces with Mom at about 8:30 last night, and Dad and I spent a mellow evening flipping channels and playing video games on the Nintendo Switch I brought up with me. Overcooked 2, for the curious. I slept fine, but Dad told me in the morning that the decadron he's taking kept him up all night, which is a bummer. Despite the lack of sleep, he's in good spirits, still not feeling any effects of the meds yet. The strategy has been grazing - many little meals over the day rather than any attempts at eating a lot in one sitting. Whenever he's sitting down, he has a Boost in hand.  Quick day at the IPOP, maybe 45 minutes of waiting for blood-work to come back. I only had time to knit three rows on the blanket I'm making before they booted us out saying that everything looked great. We just sat around in the apartment before heading to family friends Sindee Ernst and Bob Brown's for an afternoon chatting on their back deck. She's cur...

I finished my report last night before we finished the day, so I didn't get to say that Jon ate a real dinner with me, at a table, with plates and silverware and everything. It is the first time in weeks that he has felt well enough to eat without grimacing.  We went to the community kitchen which has lots of windows and cupboards full of pots and pans and we boiled some water for tortellini (fine dining) and warmed up some tomato sauce and got a giant bowl of salad out of the fridge. There is a nice tradition of food sharing here -- people leave dry goods in the pantry instead of taking it home when they leave, and there are packages of frozen vegetables in the freezer and on Wednesdays there is a meal provided by this building. That's where the giant salad came from.  It was high quality leafy stuff and protein-dense other stuff. The people who live here are pretty focused on getting well, I bet. We met a few nice people who were coming in and out, getting food out of the fr...

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 ...

We just got back from an assessment with Dr. Imus. He has decided that Jon is well enough to go through with the treatment. He was running very late -- over an hour -- so we didn't have a super long appointment but we asked a lot of questions about what to expect, if nothing else. Basically, he says he is confident that Hopkins can get him through this and then we will have to wait to see how he does after that. He is likely to feel pretty sick while his body adjusts to this. He will have even less immunity than he does now and he will be isolated from most people unless outdoors. One of the big issues, as we already know, is that he is losing weight daily because of the thrush and  nausea. He will redouble his efforts to do the medicine every 6 hours. Dr. Imus says one thing we know for sure, it doesn't work it if isn't done right. We don't know if it will ever really work, but it won't work if you use it erratically. Alissa already said that, of course. Tomorrow m...