Hold Tight and Pretend It's a Plan

By morning, he is a quiet IPOP patient, sitting patiently in his chair in the corner waiting for the lab results. By afternoon, he is a grubby mechanic, fussing about all the things that are broken that he didn't know about. When we left home this morning, we were prepared to be told that we had to stay in Baltimore because Jon noticed some swelling in one of his legs last night. So when the doctor looked at his legs and saw how puffy they were (not very), he said his own ankles and feet look much worse than that after an airplane trip. He was unconcerned since it was both legs and not very bad -- it's just that we had never seen any puffiness in Jon's ankles before. The doctor said it is absolutely to be expected and he should just keep his ankles above his knees and his knees above his heart whenever possible. Hmm. Okay. As always, it took a few hours to be excused. We learned that his platelets are climbing fast (now at 33,000) and everything looks good. We went back to ...

We are at home. They let us go, but it was an unofficial release.  Jon's platelets are up to 20,000 but they are not satisfied until he is all the way to 50,000 (and then he can go back on the blood thinners...he has a history of blood clots that they don't want to forget ).  So we have to go back again on Saturday morning for another check-up and then again on Monday. On Tuesday he is scheduled to have his line taken out, and then he will presumably be a free man. Originally Amber said, you can have tomorrow off and then we will see you again on Saturday. Jon asked for clarification about what it meant to have a day off. Amber hedged. Jon asked directly, can I go home? She asked where home is. And then she said well maybe that's okay, but don't tell any other patients about this. "We never had this conversation." By which she meant that she really does believe that it is safe to go home, but that this is not according to the rules. She definitely did not want...

One day more, one day to a new beginning, raise the flag of freedom high. Every man will be a king (sic). There's a new world for the winning, there's a new world to be won. Do you hear the people sing? (Thank you, Alexandre Dumas and friends) We are still here, but they have practically promised that we will be set free tomorrow afternoon.  Jon had some weekly maintenance done on the central line, he didn't need any additives at all today, but the Nurse Practitioner who is in charge was off today and she wants to be here to look him over before they let him go. Jon walked to the CVS, about a block east of here, and when he got back he said he was pretty winded. Not enough red blood cells maybe. He won't be pushing any broken golf carts uphill in the next few weeks. He is scheduled to come back to Hopkins for various appointments next week, including getting this line taken out.   I went to the pool for what felt like the last time and there was another swimmer there! I...

As they warned us might happen, Jon's platelet numbers were lower today than yesterday and he needed another infusion. But his neutrophils jumped to 3.43 and white blood count is 4.40, well within the normal range, so the platelets will start to come back soon. His bone marrow is chugging along.  He has another appointment tomorrow and another on Thursday. We wait. But what about the Leftovers Club idea?  We have been happily living on the leftovers and parts of meals that were graciously sent to us -- soups, main courses, side dishes, sweet potatoes.  What if we made a tradition on Sunday nights of packaging up leftovers and having a swap at 5 PM?  Someone would have to be the cheerleader, reminding people that this is happening.  We could put it out on a table in categories -- vegan/omnivore, dairy, etc.  Then we could eat someone else's cooking at home, without anyone going to any big effort. Just make enough to have some leftovers. Mystery dinner. ...

Today Jon felt so much better that he said, as he was sitting in the chair waiting for the blood test results, "I am ready to go home." He knew, without any numbers back yet, that he was on the way back up.  The nurses were excited to see the results and kept refreshing the results page, knowing it would be good news. The question was: how good.   They had already changed his schedule, even before he got in there, ending his daily appointments on Friday. They knew that he is making very good progress.  They see this all the time, both the bad and the good. They say you never know when someone comes in, which it will be.  So his white blood counts are at 1.04 (also called over 1000), his neutrophils have bounced all the way to 0.45 and his platelets are still hanging low at 1.2.  But all he needed was some potassium pills and one more Neupogen shot and we were on our way. Tomorrow will be the day that tells them just how quickly he can expect to be set free....

Jon got another dose of platelets today since he keeps using them up but everything else seems to be fine. In fact, his white blood count is inching up.  After two days of 0.07, yesterday was 0.1 and today was a whopping 0.25. If you were to graph that, it would be a good trajectory. Still very close to the bottom but the important thing is that he is starting to make new blood cells.  Neutrophils remain at a solid 0.00. All I can say is he has incredible energy for someone who is running on fumes.   So after we got back from another tough day at the office, we had some lunch and I joined my girlfriends for some Zoom time.  But we had already decided that if Jon felt well enough to hit the road, we were going to head out.  We headed south. We got home by about 3:30, clear blue skies and mid 80s, all the trees look so leafy and full, and the crabapples are still blooming. Jon took a quick nap on the couch in our big empty house and I headed out to do some sp...

Those moments that felt kind of yucky last night went away by morning.  I guess when you write a report every day, it is hard to maintain perspective. There is no predicting anything, but we are relieved to report that Jon had a good day today. He is starting to feel that his phone doesn't have enough useful entertainment on it -- the puzzles take a little while, the news is terrible, playing Hearts is good but mostly for the middle of the night.  He finds that he does not have the focus for reading real books. Jon went to his 1:00 appointment by himself and I got a visit with Nell. She drove all the way here with many containers of soup and homemade food from friends and neighbors, and we had a picnic lunch in the sun on the little patio. It was so nice to see her. I have only been here for six days straight this time, but it feels like a very long time. By the time I got over to the IPOP and found Jon on the 5th floor (on the weekend, everyone gets squished into the old clin...

Today he seemed pretty good but tonight there are more symptoms that we have been waiting for.  More nausea, a slight fever, general malaise.  It would be good to get through the night without getting up to the magic temperature so we don't have to do anything drastic. This is what zero neutrophils does. In Passover terms, this is the narrow place where things are hard, and we are looking forward to better times. At his appointment today, he had nothing to report of interest and he didn't need any infusions.  Even just while we were coming back from the IPOP, he was still feeling mostly normal -- we did a timed test of which route between home and clinic was the fastest. Jon walked the outdoor route (at my slow pace) and I walked the indoor route through the garage.  The indoor way was fastest by one minute but I like the outdoor way better. As soon as we got home, he started to feel chilled and weary, and he got into bed for a long nap.  While things were still...

Not to get too far ahead of ourselves here, but things are looking very good right now.  Jon didn't need any supplemental anything today -- no platelets, no blood parts, no potassium.  His neutrophils are basically zero (220), which is making Jordan the nurse very happy. She keeps saying "this is right where we want to be." He is taking plenty of meds to try to mitigate the GI issues, and today was better than yesterday. She did warn that it is very likely he will get platelets and potassium tomorrow, but tomorrow is another day. The important thing is that he is in good shape, emotionally and mentally.  When you are not in pain, you can think and be present. He is not in pain most of the time. I had a great morning -- I went swimming in the pool that seems to be just for me and I did a very quick trip to Aldi to stock up on a few items (okay, shopping is kind of fun, who knew). The check-out guy worked like the wind. I could barely keep up, filling my bag. If he applied ...

Today I went with Jon to the IPOP (didn't go yesterday or the day before because it didn't seem necessary). I went because it is getting to the time when they might wonder why he doesn't have a caregiver with him, plus I don't get such a detailed report when he goes alone. He is suffering more from the various ills of his digestive system, but he has no mouth sores and no sore throat and no terrible nausea. That is all very good. He is losing weight every day (the nurse's eyebrows went up today) because he is very good at not eating when it doesn't seem like it will go well. But the nurse today said that while his body is trying to get organized under this assault, he really needs to have as many tiny snacks as he can manage. I am glad she said that.  She pointed out that at this point his body has no defenses, and it needs some nutrients. As expected, his white blood counts continue to descend. His neutrophils are now at 220, which is very close to zero. They w...

Day Four.  I checked the notes from 2010 again and Jon is still doing much better than he did then.  My notes from that time say, "he looks faded." Today he looks pretty strong. His white blood counts and platelets are going down. He is not hungry. But he is still having energetic conversations on the phone with Stephen (who is starting a big project without Jon, and they are trying to think of all the things) and calling the cooler mechanic and arranging things with Mark Trader.  He really seems good to me. I had a very good day myself, spending the morning writing something that was bubbling in my mind and then I took a long walk (for my cranky knees) to the little community center pool. Like the time I went a month ago, the pool was completely empty. I had the whole thing to myself, so I swam in it like it was a track (it is a short pool, reminiscent of our grandparents' pool). My lifeguard was talking on the phone the whole time, so I wasn't feeling too embarrasse...

Jon's appointment was at 1:00, for no reason that has anything to do with him. He is on the schedule but doesn't need particular attention yet. Blood test, results, conversation with Amber.  His white blood counts are coming down, as expected and desired. His red blood cells are holding firm. His GI system is beginning to be an issue again, which is also expected but definitely not desired. This is his Achilles heel, historically. So this picture is mostly my dinner (do people who live in dorm rooms do food blogs?).  We are eating pretty wholesome food, considering that it is Passover and we are working with no pots or pans or stove. Or I am, anyway. Jon eats much less than I do. But he has good energy, he is not nauseous, he is otherwise doing fine. And tonight we finally watched the first two episodes of Ted Lasso -- I have been waiting until I was ready to be entertained by television. The time is here. If not now, when? And after a long break while we were home, I am back ...

Jon says this may end up being the easiest day of all the post-transplant days -- they took some blood, got the results and let him go home.  That is as good as it gets. He had a nap today but he was less wiped out than the days before this one.   I did not have a nap today and I am ready for a lazy day (it is supposed to rain all day tomorrow and never get out of the low 40's, that sounds ideal for lounging).  I worked all day on Saturday and all day on Sunday -- there were big social gatherings going on all around for Passover and Easter but since I am in quarantine, I just waved at people from the tractor.  By the end of the weekend, we are once again all set for the crew to keep planting for the next 10 days or so. The farm looks beautiful, all the plants that are in the ground have good color and are growing slowly in this slow, cool spring. The crabapples and cherries and dogwoods are in full bloom. This is the most blooming gorgeous month. I did have a fe...

When Mom left for home last night after the Seder, she made sure I knew it would be my job to update the blog today. She said it could be short, and I expect it to be. We turned in early last night (10:30ish), Dad says he slept fairly well. We went to the IPOP around 9:30 this morning. They took his blood, asked him a lot of questions about possible side effects that he answered in the negative, and then pumped him full of anti-nausea medication through an IV. We sat for roughly 1.5 hours waiting for his blood test results to tell us if any particular action needed to be taken now, largely passed by struggling with the Times Saturday crossword. When the results came back clear, we left. Back in the apartment, we ate a light lunch of tomato soup and melted cheese on matzah, finished the crossword and a few others, took some naps (him and me), watched some Maltese Falcon. Around 5 we got ourselves together enough to go to a nearby park where we enjoyed some fancy popsicles from a local M...

Jon got three bags of his own stem cells returned to his body, along with a big dose of Benadryl.  The Benadryl made him instantly sleepy and also made his legs very twitchy.  But the whole transplant only took about half an hour, including a break to check vital signs between each bag.  Then he had to stay there for two hours so they could be sure nothing went wrong. I checked my notes from the last Day Zero in October 2011.  This one went better, and the chemo days were also better this time. This tells me two things, maybe.  There have been some refinements to the system in the last 11 1/2 years which have helped to stave off the side effects and/or Jon is a different person this time around and this just didn't make him feel as queasy. We went back to the apartment and had some lunch and then Jon took a nap for a few hours. I went back to the Kaiser pharmacy on my daily errand, picking up more drugs. His drug regimen is getting slightly more complicated as t...

In an uneventful flourish, they put 20 minutes of toxins into Jon and sent him on his way.  So far his body has not noticed that there is something amiss.  He does not feel nauseous (they put anti-nausea meds in the line today) or uncomfortable yet. Tomorrow is the big day and we hope it will be uneventful too. We met Amber, the N.P. whose specialty is autologous ("auto") transplants. She will be watching over Jon for the next few weeks. She told him that some people, unpredictably, have no reaction at all to the whole process.  We doubt that will be the case with him since he has already proven that there are many ways to get sidetracked.  She also said that most people end up getting admitted to the hospital with a fever somewhere along the way. He is prepared for that, and will not think of that as a sign of failure. But I didn't hang out at the IPOP in the morning, I went to the grocery store. This is noteworthy because I cannot remember the last time I went shop...

A quick re-cap, for those who have long ago forgotten the first part: On Sunday, March 6 we spent the whole day at the IPOP and Jon got a full day of chemo to start the process.  Then he gave himself shots for a week and we waited a long time for the stem cells to be numerous enough for harvesting, and that took more days than we had hoped. In the meantime, Jon got pneumonia and had to go into the hospital for about a week to get a long dose of antibiotics. Then we went home for two weeks to finish up the course of antibiotics.  We just got back to Hopkins this morning and we are 2 1/2 weeks behind schedule, but we are once more moving forward. Hallelujah. We arrived on time for his 8:30 appointment and parked our car full of food and clothes and books in the garage because we didn't have housing yet. The appointment was uneventful -- first the daily blood draw, then the wait for the results, then an infusion of decadron, some potassium (always low on potassium), some nausea m...

Of course we all know by now that all schedules are subject to change, but this is the closest we have ever got to the transplant date (which is zero, and this is T-3).  At this moment (8:25 PM) I am thinking about packing to go and Jon is getting ready to go outside and do a few last minute things -- fixing a valve at Parents so the irrigation can go on, dumping the sawdust for the blueberries, and setting up the new bushhog so it can be useful in the next few weeks.  Today Jon did the whole loop that he had planned for the day -- Loudoun, Baltimore to get weighed and measured, back to Loudoun, home in time for a family dinner. That was 4 1/2 hours of driving.  Meanwhile Carrie and I did a lot of tractor work to get the fields as ready as possible for the next few weeks. Now they can keep moving forward with planting onions and lettuce and broccoli and sorrel while we are back in isolation. There is still more cold weather in the forecast. It's a slow spring. Jon got wor...

I haven't had a chance to strategize with Jon yet but he got a call in the late morning saying that he needs to be at the IPOP on Wednesday morning. Oof, that is so little warning. Because we had heard not one peep from them in the last two weeks, we assumed we would hear that things were starting in a week or so. We have so many balls in the air now that need to be handed off to some other hands.  It will happen. We have until tomorrow night to get sorted out. But a couple hours after he got that call, I was driving the tractor over so Jon could help me hook up the bedder and Benjamin says, as I am driving by, "Dad is cursing."  "What's he cursing about?"  "Dunno."  Turns out he just got another call saying he needs to be in Baltimore tomorrow at 2:30 to get his weight and height checked.  What a waste of four hours right in the middle of the day.  So now he is going to drive the truck and trailer to Loudoun in the morning, picking up a load of sa...

 First we talked to a fellow who wanted to see how Jon really looked, after all that pneumonia and stuff. She said his lungs were clear, not a crackle to be heard. She asked some questions and went out to consult with Dr. Imus.  It seems to me they were waiting for Jon to tell them what should happen next. They wanted to know if he was ready to move forward -- because from looking at his medical record, they thought he might be kind of a wreck. He said he felt fine, no better or worse than before, but he didn't feel all that bad before.  I said I think he is better than he was a week ago, with less stamina and strength than normal. Dr. Imus says he will check once more with the Infectious Disease doctor to make sure she is comfortable with moving forward. As far as he can tell, Jon is clear of infections. The issue becomes getting back on the schedule. They have to have time to thaw the stem cells and get him back into the whole appointment system. It could be two weeks f...