Hold Tight and Pretend It's a Plan

Okay, I misspoke. I have a few more things to say... Being home means not having to put your password into your phone every single time you pick it up because it doesn't recognize you in a mask. It means sleeping in a bed that has the mattress we chose, on a frame that Jon built, in a room that is a temperature that we like. It is such a relief to be in our bed. For two nights, I have slept like a rock and got out of bed with a much happier back. It means Jon can sit in the middle of everything, in his big recliner. Still coughing, but not feeling quite so hopeless. It means staying up with Thalia until midnight, entertaining and being entertained, so that her mama can get a two hour running start on the night. Thalia has learned night and day now but she still starts her night later than she will eventually. It means eating from our own dishes instead of the perfectly nice but SO not my size and style hotel dishes. And having forks that weigh something and spoons that are from Jon...

 After a full day of all the things we anticipated (last visit to IPOP, exit conversation with Dr. Imus, no CT scan because Kaiser said no, on to extricating ourselves from Baltimore), we made it home. ********** We took the shuttle for the last time -- the roads are plowed minimally and the cars parked on the edges are piled up with snow -- and had our 26th visit with the nurses. It will be weird not to see them anymore. We have graduated. If we went back tomorrow, we would not belong. It was nice to see Dr. Imus for the first time since about November. He was glad it went so well and wants us to be careful about managing the rest of the RSV recovery. There are so many more appointments in the next weeks and months, but mostly at Kaiser. He said that a preliminary look at the myeloma indicators shows that the treatment has already had some effect. Before the CAR-T, the M-spike was around 0.6 and two weeks after the treatment, it was 0.3. That is significant. Kaiser declined the re...

Jon had a pretty lousy night last night and I was starting to despair at 4 AM that things were not heading in the right direction. But we got ourselves up and out, took the shuttle to the hospital for an 8:15 appointment. Then they couldn't get the line to work for drawing blood and they had to do the whole thing with the unclogging stuff, so time went by. I went outside to take a walk in the crispy air and by the time I got back Jon said Julie the NP said she was thinking of discharging him tomorrow. WE CAN GO HOME TOMORROW! As far as we can tell, nothing is that much better than yesterday, but Julie was finally back after the weekend and she said, why are we keeping him here? He can take the oxygen home with him. Oh thank goodness. That's exactly what we want.  Now there are all kinds of logistical things to figure out. We are going to rent a car, but Jon has appointments tomorrow, the usual checking of vitals and blood counts and then we finally get to see Dr. Imus for an ex...

One of the nice benefits of writing this long and meandering narrative is that I get occasional commentary by text and email. Tonight my sweet cousin Eric told me that he has decided this is the IPOP Odyssey. So then I had to quickly look up what the themes of The Odyssey were again -- journey, homecoming, loyalty, faithfulness, divine intervention (according to the most succinct Sparknotes). Well, I think that is a fair comparison, although there is no lyric poetry here -- and I think that if there were divine intervention we would not be astute enough to recognize it.  This morning when I called the shuttle it was a whole new experience. She asked my name, my phone number and confirmed that there would be two seats available. And then I got about five texts telling me how close it was.  The other times, they never had a record that I called and the driver just spluttered and complained about never getting any warning but he let us get on.  Because Jon coughs a lot and h...

For those who have not yet had the fun of reading A Gentleman in Moscow , this is your reminder that you should go and do that. His imprisonment lasted decades, and we are only finishing our 23rd day in captivity.  When I called to ask for seats on the shuttle, the nice lady said there was no on-call shuttle running today. Not so surprising, since the streets had only been rudimentarily cleared and it was still snowing. There were plows on pickup trucks, randomly passing by, but it seemed that many of them did not have 4WD, and that meant they couldn't really put their plows down all the way. It was a mess. Jon sent this text to our kids: The previous two days, on the rides back to the hotel, Lyft was $9 and Uber was $10 so we took Lyft. I did give $3 tip each ride cause it is so short. Today, coming to the hospital, because the shuttle wasn't running because of the snow, Lyft was now $14 but Uber was $37! And I gave a $5 tip because it was not obvious we were going to make it....

This is my own assessment, not the doctor's, but I see him a lot more than they do. The doctor saw Jon for about 3 minutes today and said, "we will see you tomorrow."  Jon asked the nurse how many attendings there are who rotate through the IPOP. This nurse has spent his entire career in the IPOP and he knows them all. He counted them up by name, and he said he thought there were 14, including leukemia doctors. We asked how long Hopkins has been doing CAR-T and he said about five years, and that Hopkins is conservative and they were late adopters. But they have been doing transplants for 30 years.  Last night at about 11:00, Jon took a long, steamy shower. It was the first time in many weeks that he didn't have any tubes sticking out of him, so we didn't have to wrap him in Press 'n' Seal. The shower did him a lot of good. He really did not cough that much last night. Ironically, I couldn't go to sleep -- waiting to hear whether he was coughing, or jus...

After watching and listening to all the predictions of dire winter weather, I got anxious about the idea that the power might go out and Jon's oxygen machine wouldn't work and we would be stuck here, unable to get out in the snow. We do have back-up tanks, but I was having visions of Jon without enough air. So I asked the kitchen lady who greets us cheerfully every morning, what happens if the power goes out? She said, we have a generator. So then I could stop fretting about that. Our first task this morning was to find a place that would work on our car. The shop that Don suggested said yes and gave us the number of a towing company. We had a plan after only a half an hour of phone calls. Very satisfying.   It took until noon to get Jon discharged, but where were we going anyway. For the first time in his life, Jon called an Uber (with encouragement from his daughters who are veteran Uberers). I have to say that Jon is not feeling well. He still can't breathe easily. The s...

We had total confidence they would discharge Jon today. The doctor said it, the nurses said it, everybody said it. But somehow the home oxygen delivery plan was never communicated between the hospital and Kaiser. Apparently the whole team/unit was talking about how to get Jon out of there, but no one could understand what was happening.  I went home at about 1:00 to wait for the delivery of the home tanks since they wouldn't deliver it without a signature. At 4:00, I called Jon to see what was going on. He said no one really knew but it wasn't happening until tonight and we already had the mobile unit in a box, ready to go. And then there was a little side comedy/tragedy not involving the health care system. I thought I should take the car over to the hospital so I could bring Jon home, whenever things got straightened out. I waited for 25 minutes for the valet to bring the car. No car. I finally went outside to ask, and he took the keys out of his pocket and said, "stick ...

It was a day of hoping and expecting to get out of the hospital, but in the end, he is still in this bed. Not because he got worse, but because the system foiled us. This morning, when the attending came to see Jon, he said, I want you out of here. I want you back in IPOP. There is nothing we are doing for you here that we can't do there, and patients do better when they are not in the hospital. He went on to say that he was the one who created that clinic 30 years ago and he really believes it is the best place for people to get better. We knew it wouldn't be quick because it always takes a while for them to deal with all the discharge details. One of those details was organizing a way for Jon to be on oxygen until he doesn't need it anymore. He cannot breathe well enough without it.  In fact, at the end of the day, Jon is not better than he was this time yesterday, from what we can see. But some of his blood counts are better than they were and maybe that's part of wh...

Well, all days are the same length but some days do feel longer. I think a general lack of progress makes everything feel slower. Jon is still feeling bad, he is just in a different bed with a different team paying attention. Last night they determined that he has RSV. Who knows how or where he got it. There are no obvious sources. The CT scan, according to the Infection Diseases doctor, is a classic example of viral pneumonia. RSV has no proven antidote. There is one drug that might work, might not but they use it at times like this because they don't have any better ideas. Jon had RSV once before and got pneumonia in 2021(that was the year that he was getting ready to drive to NC to pick up Christmas trees, and had to be redirected when he was clearly too sick... that was the last year we sold trees) and they gave him the drug and he is still here, so that's one piece of unscientific evidence that it works. Ribavirin. The various teams came through to say hello, ask questions...

Jon has been feeling worse and worse and started to feel hopeless about ever feeling better. His appointment today was at 1:30 and he spent the whole morning in bed, sleeping and being miserable. He ate a bowl of cereal, dutifully, before we walked over. (Yesterday we took the shuttle to the hospital and on the way back out, he got into a wheelchair to cut his own return walk in half. That's how bad he was feeling.) When we got to the IPOP, they started testing him for everything again. Blood cultures in addition to the usual lab tests. Gave him a bag of potassium while he was sitting around waiting for various results. After a very long time, Julie, the NP who is the most likely to try to look at every possibility, decided he should have a CT scan to see if there might be a new infection. (I like CT scans when they are looking for pneumonia. In my view, X-rays never find it. CT scans do.) All of this took a long time because it is a holiday and there aren't many people working...

In the end, his temperature did not go up and we got to sleep in our own bed all night. That was good. He felt terrible all day yesterday, all night last night, and is still feeling pretty lousy today. But they keep saying that this is what is expected between about Days 7 and 12 (the numbers slide around, depending on who is doing the reassuring) and the CAR-T cells are clearly doing a lot of murderous work. All we know is Jon is tired enough to sleep most of the time and grumble about feeling nauseous the rest of the time. He hasn't eaten since yesterday at lunch, so tonight I said he is not allowed to go to bed after having exactly one can of ginger ale all day. He is grudgingly drinking a smoothie. I am certain he won't finish it. He doesn't think about it this way, but Rebecca and I do -- I would so much rather be here than at home with these symptoms. We don't want to have to make decisions about what to do, who to call, etc. because the hospitals at home are not ...

After a whole day of Jon sitting slumped on the couch, feeling ill or sleeping, NOW his temperature starts to rise. It is bouncing between 99.8 and 100.3.  If we see 100.5, then we have to call. Living on the edge. But he has been saying all day that he just feels bad. Non-specific bad. What you usually feel like when you have a fever. Of course he really doesn't want to go in. I already told him that we are not walking this time. He is too limp. So I wish his temperature would either go up or down so we can either go to bed or call in. I let him off the hook for eating dinner tonight and I didn't even make him drink a Boost, since I already had to run for a trashcan when he looked like he was about to throw up. Even though there is no scientific evidence to confirm this, of course there is the sense that if there is some reaction, then something must be working.  The blood work shows that there is inflammation (could be an infection but no direct evidence of that) which could...

We got carried away watching some long PBS show about the American Revolution and then we did the eclipse ball (that's where you have to clean off the end of the line, flush, attach a pressurized plastic ball of antibiotics, wait, clean, flush, clean, flush) and I went to bed after a long day of nothing of note. We got back home from the IPOP at the early hour of 10:00 and stayed in the hotel room all day. Remember A Gentleman in Moscow ? Our life is not quite as exciting. And our stay should be much shorter. And he didn't have the internet or a cell phone. I don't know what Jon would do without TikTok and all the cooking videos. Now Jon has a cold of some sort. More coughing and less easy breathing. But on Wednesday night they tested him for all the viruses and he didn't have anything, so who knows. Every day they ask him about every possible symptom, so they know what's happening. Back in Vienna, everyone is making sure Rebecca is not lonely or hungry. I should no...

In brief, Jon is fine. No hospital stay. Just antibiotics. He is weathering this part well. The people at the IPOP are surprised at nothing.  ****** Last night the doctor told Jon to go in to get checked, and he said he thought Jon might get admitted to the hospital so he could get IV antibiotics. The antibiotics are a response to a possible infection but they are also looking for signs of cytokine response syndrome. So Jon brushed his teeth and we walked to the hospital at 11:30 at night. It just seemed simplest since our car has to be retrieved by a valet and it takes some amount of effort to get a shuttle at that hour of the night. The temperature was perfect and it was only raining a little.  The only door that is open at that hour is on the furthest side of the hospital from us, so the walk was outdoors the whole way. We walked slowly. It did seem far. By the time they had him settled in a bed -- not in the hospital but in this locked down area called Oncology Evaluation ...

Jon started out as usual.  Breakfast, walk to the clinic, everything looks okay enough, no transfusions this time. Benjamin had an easy day as care companion guy. I got back at 1:30 and Benj drove away. Jon didn't want to go anywhere or do anything, he was starting to have a headache and some other aches, in addition to the usual fatigue. He did his work call and sounded pretty good on that, as he always does when he is talking to people who are not part of his medical world. Then he just started to wilt.  By now he is watching his temperature climb. One of the thermometers registers a little bit lower than the other one, so he is waiting for the lower one to get to the target temp of 100.5 and then he will call. Of course the higher one is already there...  Because all of this is so expected, it doesn't feel alarming. They told us he would start to have an inflammatory response on about Thursday. It's erev Thursday, right on schedule. He was hoping he wouldn't have sym...

This will be much shorter than my last post. Hana and I went in and the nurse could not, in fact, get anything out of the PICC lines so they accessed my port and drew the blood that way. Then they left that port line in so they will use it in the future to both take my blood and put anything in they decide is necessary. And they pulled the PICC line, so that is behind me. They say my hemoglobin is going down so they may give me a red blood infusion tomorrow, but that is then. We were done after a couple of hours and went back to the hotel in time to meet up with Benjamin who came up for his 24 hour stint. Hana drove back to Vienna to spend time with our granddaughters. Benjamin and I hung out in the room, me mostly napping and him mostly doing his medical imaging and modelling work. We had lunch in the room, he ate the pea soup we got from Zabar's. And we went out for Peter Chang's again for dinner, the fourth time for me -- both Alissa and Benjamin have eaten there. And not to...

We haven't known what to expect in terms of how much time these IPOP visits will take since the first three days of chemo -- it always sounds like it will be a quick check of vitals and blood counts and then we will be on our way, unless something happens. But, in fact, each of these visits takes a few hours. The day Alissa was here it was about five hours. Jon ate cold cereal for lunch while he waited for the anti-coagulant to work. So today I got smarter and just waited with him until they called him into the clinic and then I went outside into the sunshine and took a walk. I have already done a full survey of all of the blue security boxes -- it is hard to keep count because they sneak them in on the middle of the block sometimes and I can't remember if I have already counted that one. I think there are a little more than 25 blue boxes that surround and sprinkle through this campus. I walked south and east this time and saw more upscale neighborhoods (Butcher's Hill) tha...

In the end, the PICC line worked today. The first person to see Jon, the technician, didn't even try to use it, choosing to poke him several times, with no confidence and a lack of expertise because that's not what they do up here in the hallowed halls of IPOP. They have tubing, not real veins. But she jiggled out enough blood for the lab.  Then the next person, the oncology nurse, found that the PICC was working fine. All of these interactions have long pauses in between because there is no rush. Where is anyone going? Nowhere. The nurse changed his dressing, very nicely. Then Jon went back to sleep for about the third time while we waited for the doctor (who warned him yesterday that when the shit hit the fan -- and it will -- we will want that line to work). The doctor let us wait for over an hour, but Jon didn't care. He was dreaming.  I kept knitting. Then when he came to say hello, the visit was quick and professional and we were sent on our way. Alissa reminded us th...

This is Jon. I will tell you what happened today but Alissa may have a different perspective. She can comment if she wishes. As Hana said yesterday, Alissa was here today so she had to endure the day, and me. We were at the clinic at 8:15 after the, by now, expected breakfast of scrambled eggs and oatmeal. It should have been a short day, just waiting the 45 minutes, or so, for the blood results to come back, then we would be on our way. But it took a while for them to see me to get my vitals and take my blood because, as the nurse said, there were only two of them. And then it took five times longer for her to fill the four vials because my PICC line was particularly balky. Since it was put in a week ago, it has been fine for pushing fluids in, but hard to pull the blood out and, seemingly, getting harder each day. But we were settled down to wait by about 9:00. Alissa got me something to drink and did most of the crossword puzzle (which Rebecca, with her crossword-puzzle-finding-...

As we understand it, nothing much is supposed to happen on Day 1. Your body is just starting to realize there is new work to do. And the nurse today said there is nothing magical about Day 2 - 7, there is absolutely no way to know when the inflammation will happen (meaning, fevers, usually). She took the opportunity to fidget with Jon's meds a little since she doesn't like the way the Posaconazole interacts with lipitor. She wants to switch out the statin. He has been taking those together forever. These people up here don't like to leave any stones unturned. And she wants to try the Bactrim again even though there is a note from a long time ago saying he got a fever when he took that. She checked with the pharmacy people and they agreed with her that there is only a very small chance that was the reason for the fever, and everyone likes Bactrim best. In other words, no news. Jon feels good. Tired but not too tired to walk back and forth, and we even walked all the way to t...

It took 26 minutes to get this little teeny bag of invisible cells to drip into the line and into Jon's body. The fluid is clear, not like a stem cell transplant. The transplant nurse kept saying that when you walk past someone who is getting a regular transplant, you can tell right away what is happening because the bags of blood parts going in have color. With CAR-T you can't see anything. And there is a strict 30 minute limit to get it all in, otherwise they cut you off. The nurses stay right there and watch the entire bag until it is emptied, making sure that every drop comes down and is not leaking from any of the tubing. The cells are delivered frozen, directly from the lab at a pre-ordained time (11 AM). They come in a big canister of liquid nitrogen that weighs about 50 pounds. Two medical professionals (a technician and a Nurse Practitioner) come with the cells and they stay to watch the whole procedure.  But before all that, the electricity in the whole hospital went ...

Jon seemed quite normal today, all things considered. We had our usual sumptuous hotel breakfast and then came back up for some vacation relaxing. Then I said we had to go outside and take a walk because it was just too beautiful. The sun was shining, the sky was blue, and it was warm. The expression on his face made me laugh out loud -- that is the exact same face that his dad would make when he didn't want to do something. My most recent memory of that is Leon sitting in the sunny room at Brookhaven, in a circle, with all the other old people doing a social form of PT, tossing a beach ball around the room. Leon made such a face of distaste and dismay whenever the ball came to him. That's Jon when he thinks he has to go take a walk on a rest day.   So out we went. We were headed for the Northeast Market, about two blocks east of here. We thought we knew what it was (Anna had described it from her time at grad school here) but when we walked in, we felt like we were in one of ...

We have frittered the day away all the way to midnight, so this will be the briefest report.  Jon is continuing to hold steady, looking a little limp and tired but not grumpy. He ate breakfast, some delicious chicken soup for lunch, and a different delicious soup for dinner (we got a care package like no other -- quarts and quarts of soup,  babka, rugelach, rye bread and more treats from Zabar's... we never have to eat out again).  And we never watch movies but we are getting to that point where it is time to use the television for something other than football.  We watched a 30 year old movie that neither of us had ever seen, although we have heard bits and pieces:  Castaway. Tom Hanks. Probably the only actor who could pull that off. They are not expecting Jon at the hospital tomorrow. And they said he should feel better than he did today.

Now Jon has been infused with three days of toxins and he is starting to feel the effects. It's not terrible. Alissa says the next two days of "rest" are so that his body can absorb all of this and start killing off the white blood cells. He is tired and a little nauseous and he has a slight temperature but there is nothing to get excited about yet. The rule is that we have to call if he gets up to 100.5 degrees, but they assure us that they usually just say to take Tylenol and come see them in the morning. The nurse that took care of him today was one we remember well from last time, or maybe the time before. Very nice and personable and reassuring. They do this work all day long, all year long, and I doubt they see anything new very often. She told us that the thing we did last time, when he was taking Talquetamab under supervision, was called a "bite." So we have been here for two transplants, a bite, and now this. I went back to the IPOP at about 11:30 and I...

Okay, here are all the words that we never really hear or think about.  Jon is doing/having lymphodepletion (that's the chemo) and then, in a few days, a therapeutic cell infusion. The therapy is called CARVYKTI (ciltacabtagene auteoleucel) and the pharmaceutical company that makes this all happen is part of Johnson and Johnson -- Janssen Oncology. They gave him a piece of paper to carry with him at all times because CARVYKTI therapy can cause cytokine release syndrome or neorological toxicities, which may be fatal or life threatening, and may involve multiple organ systems. If he ends up in an emergency room at some point, he is supposed to give them this information.  The chemo comes in two bags: one is Fludarabine and the other is Cytoxan. And before they give him that, he gets a big bag of saline through the IV. There is a lot of peeing going on. We get to the IPOP at 8:15, they draw some blood from the PICC line, weigh him, take his blood pressure and then he is assigned ...

For those with limited time: Jon did fine with the first day of chemo and so far has not suffered. The PICC line is uncomfortable but that should stop feeling so tender in a few days.  The end. ****** Anna told me "Nothing Much Happens" is the name of the podcast she listens to so she can go to sleep. That's what I hope this current Baltimore chapter of the blog is like, although it might cause the readers to wander away and doze off. She says there is a lady who just talks and talks about little nothing stuff and you just fall asleep and sometimes you wake up hours later and wonder who that is, still talking. We got here a little over 24 hours ago. We ate Chinese food, Jon did some work for Al, I went to bed really early because I no longer have Thalia duty (alas). I woke up at 2:00 and thought for sure it was time to get up for the day. Then I just spent the rest of the night dreaming such complicated and bizarre stories. We were down at the breakfast room by 7:20 (whic...

Up until this afternoon, there was always a glimmer of uncertainty -- would there be one more thing that could stop us? Jon had already powered through his sore throat of last week, never getting anything stuck in his chest. He has been hunkered down at home, staying away from all the holiday and family gatherings. Still they made him have a CT scan of his sinuses and his chest to make sure there was nothing lingering there that would make this whole business too risky. Plus a few days ago he sliced off the tip of his finger while shredding something with a mandolin. He's not even supposed to be using a real razor so he can minimize the risk of cuts. That finger bled and bled and he finally had to give in and go to Urgent Care to have it bandaged the next morning (he was there anyway for the CT scans, so no extra trips). By the middle of today, we still didn't have direct confirmation that he was cleared to go. But we had already organized our exit, even if we hadn't packed...