Hold Tight and Pretend It's a Plan

A few days ago Jon got a sore throat and other cold symptoms and by today he had a cough and a runny nose, but no fever. So we knew that the plan could change. But we got up very early and drove with all the other northbound commuters to Baltimore. We got to Hopkins just a few minutes late and did not feel flustered because his first appointment was at the lab. The first time we walked into this building (the Weinberg Cancer Center) was 16 years ago. We have been here many times since then. Many of the routines are the same as always, but they have added a weapons check and the entrance path through the lobby is about as convoluted as it can get, given that there is a big open space  after you enter through the revolving doors and a receptionist's desk is the only destination. When Jon went in to get his blood drawn, he pointed out his PICC line. The technician asked if he also had a port -- yes. And Jon told her that tomorrow he is supposed to have a central line put in. She said ...

Okay, this is the last blog post until next Thursday, October 30. We are always balancing Jon's feelings about too much information and my innate need to tell all. Giving the man a little break.  Jon finished his last TPN bag today and he is free of the pole. He needs to eat enough to maintain his hard-earned weight and maybe even keep gaining some more back.  He is in touch with the dietician who will help him monitor his progress. Two weeks of TPN was enough. That is awesome. They are leaving the PICC line in just in case, for a week or so. So, why October 30?  That is the date that Jon will go to Hopkins for apheresis. As I said yesterday, it will be an all day event. And then, they gave him a whole series of appointments to get ready for the CAR-T infusion which is scheduled for December 15.  When it rains, it pours.  We had been imagining this happening in January when the farm is all closed, but by Dec 15 we will have everything organized and the farm will...

One of the phone calls Jon has been waiting for was the one that came today -- the insurance for the CAR-T has been approved, and Hopkins is working to make it all happen sooner. The scheduling challenge is getting the Interventional Radiology people to have the necessary openings (one in the early morning to put in the central line and one in the late afternoon to take it back out again).  Once they figure that out, they will call and we will mobilize.  Other phone calls were less interesting. His platelets are still low but since he has no bleeding anywhere, they will let him be. Always more blood tests in his future, like tomorrow. So, for those who are not following every medical detail perfectly because this is such a long story with so many pauses -- CAR-T cell therapy  is a type of immunotherapy made from your own T cells by modifying them in a lab and then infusing them into your body as a therapy specific to your disease. (I just cut and pasted that sentence from...

Or, a day of lateral movement, as Rebecca says. Aside from another pound regained, there was no real progress. He got another call exactly like yesterday's, trying to go over his list of meds. He got another call trying to set up an annual check-up with his PCP. Needless to say, these phone calls do not impress Jon at all. He is still waiting for his Thursday conversation with the dietician to find out what she thinks about the next steps. All of these other people are just frustrating and he doesn't hide his feelings. Jon made dinner for the granddaughters but they were far more interested in pickles straight out of the jar. After dinner, they perched on Jon's chair and listened to three Dr. Seuss books. Those two probably bring Jon the most joy of anyone, although they are also hard to keep up with. No one has energy like a 2 year old. Nell and Don generously delivered a crib to Rebecca (she is collecting all the hand-me-downs she can, and is not too worried about having ...

If any one of us gained weight like this, we would be so worried. But Jon started from a point of such deprivation that his body is clinging to every calorie. Two thousand calories a day has great meaning to an emaciated person. He has gained about a pound a day since he left the hospital. This trajectory is probably not sustainable but we will take what we can get. He got some phone calls from Kaiser people checking in about this and that, and he was not that nice about it, according to his daughter who heard all the conversations. Someone called to go through the meds that he is taking (he said that was not necessary, he knows what he is taking) and someone else called to do an annual wellness check. They should read his chart before making a call like that. I am sure that nurse was surprised at the vehemence of his response. I can imagine her backing away from the phone, checking to see if it was smoking... Cookie and Paul were in town for work reasons, and they asked if they could ...

Jon's accomplishments are modest each day, and perhaps his biggest contribution to the larger community (our extended family) was a big bowl of garlic green beans. Not big enough, but that was my fault, not his. I picked the beans and brought back what looked like a big pile. No one got to eat as many as they would want, but that is generally true with his beans. And they were without a doubt the most beautiful beans of 2025, but that's another story. Other than that, there was a lot of football and baseball to watch today, and small meals to eat throughout the day. There were no Kaiser trips. There were no indications of backsliding. There was even a little less crankiness than recently. We missed going to a wedding celebration this weekend, and that was sad, but the father of the bride is Jon's college roommate Ed, and he and Beth came to visit Jon this afternoon, which was very nice of them. They brought some yummy wedding food and told Jon about the party we missed.  Jo...

I was the only one of us who ended up with colonoscopy-worthy diarrhea after last night's pawpaw dessert. Everyone else got a good night's sleep. Thank goodness. It would have been a very bad night if Mika and Liana had pooped every 25 minutes. Me, I can take it in stride. It was epic. I am not going to eat any more pawpaws. Lesson learned. Other than that, the day was unremarkable,  Jon had another outing to get his blood tested (no results yet, maybe everyone was at the No Kings rallies).  Benjamin and the girls came back for another try at an overnight visit since it didn't work out last night. The markets were unusually quiet, and we are choosing to believe that it was because everyone was heading out to a protest. There are no other excuses that would be accepted. Our loads were big and beautiful. This is one of those days on the long road, like when we are on a road trip between Denver and Reno. Not a lot to report, just miles to go. And lots of naps along the way.

Two video appointments today: one with a palliative care doctor and one with a dietician. The first one was not an unqualified success, the second one ended with a plan that Jon likes. I wasn't here for the palliative care conversation, but from Jon's report, it wasn't quite what he expected or hoped for. We thought it was an introduction, a relationship-starting meeting. She wanted to offer some therapeutic help. It sounds like this didn't go that well. They don't even know each other and she was telling Jon to get out of his head, to stop thinking about it so much. Oh dear. Plus she tried to establish some kind of rapport, as one smart person to another. Oh dear. When someone tells you she is smart, or you are smart, you start to doubt the whole interaction. She recommended trying a drug that his PCP had prescribed a year ago (an anti-depressant with appetite-increasing benefits). Alissa remembers that when he tried it last year, he ended up sleeping for two days ...

Jon and Alissa and Rebecca have been doing the NYT crossword puzzle together (tag teaming by phone) for years -- they have an unbroken streak of about 2000 days. The record is unofficial because Jon got a new phone and the Times lost track of them, but it doesn't matter. They know they have not missed a day. Which is one demonstration of maintaining your priorities, come what may. Jon's priorities are clear, and we have already talked about them on this blog. While he may have cancer, he definitely doesn't want to be a sick person, or to identify as one. He wants to get out of this chair, get rid of this bag, resume his life of solving problems and fixing stuff. His pro-active ranting yesterday did yield some results. He has an appointment tomorrow with a nutritionist. He finally got a long email from his oncologist -- she said she is on medical leave (!) for the next few weeks and she is leaving him in the care of a different (unnamed) Kaiser oncologist. When his platelets...

Jon sleeps about half of the night and the other half he apparently spends cataloguing all the ongoing issues that need to be addressed. When I finally wake up (at 5:50, for example), he wants to outline the situation as he understands it now.  Sometimes his assessments are dark, sometimes they are practical, always they are looking into the future. None of this one day at a time stuff for him. Today he is feeling completely sick and tired of this IV pole. He is over it. He wants to speak to a dietician immediately to find out what the plan is. As he says, "there is no plan." When we left the hospital, the plan was for him to be on TPN for a couple of weeks until he was stronger and then we could find out whether he could get the G tube. This man wants nothing to do with a G tube at this point. He wants to eat his calories. And he wants a nutritionist/dietician to tell him how to do that. His daughter the doctor does not want to see him get that weak and sick again, so she is...

This is Jon. No real news, just a chance to say how much I appreciate all the care and love I am getting though all the people reading and responding to this blog. Since I got home, things have settled into a routine. Being tethered to the IV line with the nutrition means my range of freedom is pretty much limited to the first floor of our house, and then being driven to Kaiser by Rebecca when necessary. The only other place I go is upstairs to sleep in our bed, which I love because it relieves all pressure on my back, which even hurts some when sitting, and is very noticeable when standing. But I move around this floor a good deal, doing most things for myself that Rebecca used to do for me. What she has to do is keep the IV happening, 24 hrs/day, into the indefinite future. I did make dinner the last two nights. Now we have some leftovers so it'll probably be a few days before I cook again. What happened today was a nurse came by to start me up on the home care system. Since I ca...

Jon had to get to Kaiser twice today -- once to get his blood typed (as if they don't know his blood type after a bazillion blood draws) and later in the day to get an infusion of platelets. This is a fair amount of effort, getting out of the house, into the car, into Kaiser  in a wheelchair and then back again. Also a fair amount of effort for Rebecca who is now starting to really notice how hard it is to get off the couch. But they did it and neither seemed to be too exhausted by the trips. And in addition, Jon has had a particular recipe in his mind and he really wanted to make this lemon chicken soup. We weren't sure this was really the right time, but he did it, every step of it without help. He ate it for dinner. No discussion. None of us really understands why he had to rush to get platelets since he hasn't had a bloody nose since the day before yesterday and this infusion doesn't have a chance of increasing his numbers to any relevant level (as in, no one is goi...

The difference between today and yesterday: dramatic. Yesterday was one long struggle with a nosebleed, and trying to figure out the best course of action. Today there was not a single nosebleed, and the stress level went way down. In addition, Jon said tonight that he no longer thinks has a food aversion. Things still don't taste good, and many textures are impossible, but the idea of putting food in his mouth is not so awful. I wonder whether getting those electrolytes back in balance helped. Certainly the nephrologist (who was kind of useless on the day we met with him) said that hyponatremia makes a person not want to eat. Jon is sure that he will not have another chemo treatment anytime soon, since his platelets need to be at 50, minimum, and he is far from that number. We will see what happens with the next labs. His energy is much better. A week ago he could barely talk. Today he talked a lot and did not seem to notice. The teaching nurse came tonight to make sure that Rebec...

It is great to be home, all of us. Jon is tied to this pole, sitting in the recliner. He gets up occasionally but is generally dismayed at how frail he is. Some have said that every day you spend in the hospital, you can expect to spend a week to recover. So he has eight weeks of recovery to look forward to, although I haven't said that to him aloud. He observes that he has never been in this bad shape, and except for the last week, I would agree.  Even when we were at Hopkins, he was walking himself all the way to the IPOP every day, and there is no way he could do that today.` However, here are the things he has had some influence over today, other than his own care. He talked with Michael about the various steps to getting the cider press up and running. Michael knows how to do it all, this was just a refresher. He did the accounting for the markets and argued with Rebecca over the method he uses (she does it differently). When I told him the coolbot was frozen over yesterday an...

Jon was sent home today, with a lot of medical equipment and bags of TPN. He is happy to be home, very comfortable in the big chair, and delighted to see Mika and Liana who came over for a little dessert. He will be tied to this bag of TPN until someone says he can change the 24 hour schedule.  Once there was a viable plan for getting some nutrients into him, it seemed like things started to fall into place. In addition, he was probably finally getting the right balance of potassium and phosphorus and whatever else they kept adding to his menu. Today he certainly seems like himself. He is weak and extremely thin, but he is keeping track of everything -- he asked the nurses what they were giving him, and asked questions that were not easily answered. For the next week or more, there will be people coming to our house to support this TPN process. No one really wants us to touch anything, except to turn it off if something goes wrong. Someone will come to take blood to make sure every...

Peripherally Inserted Central Catheter. We just looked it up since we had no idea. Jon and Rebecca report that the technician cleared the room at 1:00 and turned it into a space that was fully prepared for a surgical maneuver (not exactly, but they had to poke a hole and slip a long catheter in that goes all the way from his arm to that big vein next to his port). Jon says she was extremely competent and said she could do this with her eyes closed. So now Jon is all ready to start getting his nutrition through TPN (Total Parenteral Nutrition, avoiding the GI tract). They start at 9 PM in this hospital. Jon has been dabbling in eating but no one thinks this is the real way he is going to get fed. This will be a bonus. He had soup, jello, milk, fruit cup.  Progress. Last night was not so restful but we both slept in between the hourly visits from the various people who come to poke and measure and deliver medication and take blood and tangle with the blood pressure cuff. There is no ...

I will write more tonight, but I just want to say that no matter how many times you make a plan, something will come up to force an adjustment. Jon had a hard day, partly because his hopes keep getting set aside. He still has this pneumonia which is probably what is causing fevers. Fevers keep them from proceeding to the next step (right now the next step is to feed him using an IV and get rid of the NG tube which is causing its own issues because he has low platelets ). Despite what the rest of my family feels, I think the medical teams are trying really hard to do no harm. Everything takes a lot of time, waiting for more information, weighing the risks. Jon is discouraged because the goal posts keep moving. He needs to be strong enough to take some of these risks. He is not in a good place for being patient and the rest of us need to help him not to feel defeated. I am going back in to spend the night and I will have time to write more later. **** 9:48 in the hospital room. Jon watc...

Alissa went back to NY today, Benjamin spent a good part of the day in the room with Jon, and Rebecca came in during the afternoon. I watched the WhatsApp conversation between the three of them while I worked all day.  They turned off his nutrition delivery, anticipating that he would have a G tube put in. But then the Interventional Radiology report said that there was not a path to putting in a G tube because he has organs in the way, somehow. The only way to get one installed is surgically, working from the inside. Meanwhile, they didn't turn the "feed" back on until mid-afternoon. Benjamin had to get someone to pay attention.  Late in the day, Rebecca reported, "surgery just walked in." They came to tell Jon that they don't recommend surgery at this point, while he is so compromised and weak. They would like to wait a few weeks until he is clear of this pneumonia (did we mention that they found that he has a bigger pneumonia that previously understood?  ...

We are choosing to take it as a good sign that the grumpiness is coming back. For a few days, Jon has been too weak to be his usual self, but now he has the capacity to be quite impatient and grouchy -- maybe this nutrition and electrolyte regime is starting to make his brain work again. Alissa says nutrients go first to the brain, so this is make sense. I know that I tend to over-report, so I will return to my past practice of giving an Executive Summary for those who just need to know the basics, and then I will write whatever I want to for those who have time for the commentary. I hope this blog can be de-activated again by the end of the week, and I am grateful to all who have checked in, sent their love and prayers, and continue to follow the story. It has been a long 16 years... The Summary Yesterday they increased the rate of nutrient delivery (through a tube in his nose, delivering to his stomach), but now I can't remember what the number is. Anyway, he is tolerating it. He...

I haven't been to see him myself yet today, but I hear that he is starting to express some angst about all the things he should be doing on the farm. This is good. It has been days since he even thought to pick up his phone, which certainly was an indication of how terrible he was feeling.  The NG tube was put in yesterday and they started feeding him right away, even though they didn't quite have the equipment in place to do it all to code. Rebecca says they manually pumped the formula, which must have been a challenge since the pace of delivery was supposed to be extremely slow and careful. By 10:00 last night, the charge nurse had installed the pump. They still didn't have all the right equipment but they managed to piece everything together and Jon was fed a small dribble of formula all night long. Today they are working on increasing the dosage, as his stomach shows that it can manage this. Things are looking up. Alissa and Rebecca went in this morning and Anna is taki...

Since the last report, a little over a year ago, Jon has been dealing with a lot of treatment-related symptoms. It has been a tough 15 months or so since he started on the Telqetamab. The main side effect was loss of taste, which led to a general loss of appetite and a struggle to eat. Through it all, Jon has continued to take care of us by cooking our dinners, maintaining so much at the farm, helping us to keep everything going. By about June, that treatment stopped being effective and the oncologists decided that he was strong enough to be a candidate for CAR-T (another long and involved process that can be described later, but it holds promise), even though he lost about 40 pounds in that year. His spirits were good, his energy was good, he had adapted to his loss of taste. The doctors prescribed a bridge treatment, something to keep the myeloma quiet if possible. It was known to have many dire side effects. Back to the decadron, a whomping amount of steroids that means very little ...