Hold Tight and Pretend It's a Plan

Yesterday Jon's pulmonologist at Kaiser told him he is not healthy enough for the treatment that he was scheduled to start on Thursday. Today he went up for a health assessment at Hopkins and they agreed with that opinion. So they have put it off for a week, and we will see what happens.  Scree, I just learned yesterday, is the word for little rocks that are on slopes or at the base of hills. If you try to hike up a hill that has a lot of scree, you go up about a step and then slide down two steps. You wonder how you will ever get up to the top of the hill. But eventually, somehow, you do. It just takes a lot of effort.  Jon is hiking in a pile of scree. He looks better to us than he did a week ago. Coughing less, less scrunched over. But still not at all hungry, and his tongue is back to the fuzzy yuckiness that probably comes with antibiotics. When you can't eat and nothing tastes good, that takes away a huge amount of the fun in life.  Ice cream seems to be "not terrib...

Jon often thinks they will not be able to do anything for him if he goes to the doctor -- and sometimes he is right -- but this time they gave him some new tools and his cough is finally improving. He has a nebulizer that seems to be making a difference. Who knows if the antibiotics are effective, but they are making his stomach feel bad. We are on a much improved trajectory, though, as it seems very likely that he will get to Hopkins on Thursday. Still some details to work out but I am confident it will not be hard.  Rebecca and I will trade off, depending on who needs to be at home when. We had a raucous dinner party at our house last night with the whole Rose family.  Thai food on the porch and then a major trampoline extravaganza.  I don't think Jon actually ate anything, nor did he go on the trampoline, but it was nice to have a visit from all the cousins. 

Yesterday someone called Jon from Hopkins and said he is on the schedule for next Thursday. He will be in the IPOP (InPatient OutPatient) clinic for his third time. They will administer small doses of this treatment, every 3 days, making sure he can tolerate it.  Kaiser no longer gives away the benefit of housing, but today we learned that Jon can just rent an apartment in the same building we stayed in two years ago and it is extremely reasonably priced. Rebecca will probably be his main caregiver, but I will take some turns when I can. So all he has to do is get well enough to do this. By the end of yesterday he was looking so miserable and sick, we  made him call Urgent Care. He had a fever and his oxygen levels were low. Rebecca took him in, against his better judgment. They did a CT scan and decided he should stay overnight. This was much better than sending him to the hospital, which was their other choice. He passed a walking test, and his O2 levels stayed steady, if lo...

After so many years of this, we should not be surprised that we are still waiting for instructions. Hurry up and wait and wait and wait. On May 6 we got all that information. It is now May 22 and we have not learned anything substantive since then. In the meantime, Jon has been improving very slowly from the various ailments that have afflicted him and discouraged him -- mouth sore from radiation (better now), some nasty tongue fungus that the doctors cannot agree on how to treat because they don't agree on what it is, a cough that does not get better and gets worse occasionally. His appetite is not much.  Jon has asked for updates and has sent a number of inquiries. Sometimes they call him back. The last response we got from Dr. Imus was that they are planning to put him on a different drug from the one that was discussed, but one that still requires him to get small doses while staying at Johns Hopkins so they can watch over him. They have put off the CAR-T idea for now, as they ...

 The executive summary, for those who really don't need all the excruciating detail: We met with Dr. Imus at Hopkins, and with Alissa's help, we decided on a plan. No guarantees that it will go smoothly, but we all agreed this is the best course of action -- Jon will go on a "bridge treatment" to keep him going until they can get everything organized for CAR-T in about three months.  This will be something like the bone marrow transplants, from the patient's perspective, but the science is different. He will need to be an outpatient again, staying at Hopkins, for at least a month. If it works, his body should take care of the myeloma after that. If it doesn't work, we will think about that later, but it won't be good. _______________________ The longer version, not terribly technical because I don't have all the medical jargon, but you will learn more about blood cancer than you might have wondered about. Briefly reminding you of how we got here:  Jon ...