Waiting list

I am now on the waiting list to get a booster shot. I have no idea how long it will be. From studies, I am probably not protected by the Covid vaccines (Pfizer) I received in January and February. This is from today's email about recent studies and is from the LLS, Leukemia & Lymphoma Society:

Non-Hodgkin lymphoma patients are less likely to have detectable antibodies. The percentage of patients with non-Hodgkin lymphoma who were seronegative following vaccination ranged from 21% to 56%. This includes patients with diffuse large B cell, mantle cell, marginal zone and follicular lymphomas, as well as Waldenstrom’s macroglobulinemia. In contrast, just one of 64 Hodgkin lymphoma patients was seronegative. Many of these patients were treated with anti-CD20 antibodies such as rituximab, which eliminates B-cells that make antibodies.

(I had rituximab and I have (had?) Diffuse Large B-cell Lymphoma) 

P.S. I just scheduled my booster shot and it is this week! 

Home to stay

My blood draw from today showed good counts and so I won't have the twice weekly visits from now on! My next clinic visit should be for the PET scan on September 9th. 

I still have fatigue, neuropathy, mucusitis and constipation but improvement should be happening soon. And maybe hair growth?

I would have gone into the hospital in a few days since it will be 2 weeks. I miss a bit of the caring from the nurses at the hospital. But what a relief that I can just stay home.

Of course, with lowered immunity and the Delta variant there are still big limits on what I can do. I am in limbo until there is a booster shot for the 3%  of the population who like me are immuno-compromised. 

Only 16% of the world's population is vaccinated! 

Prognosis of lymphoma

I am just about to leave the hospital and breathe fresh air again. I am looking forward to that. It will be a month or two before my counts are up again and I can resume having fresh flowers, maybe taking in a foster pet, maybe going back to book group. 

 I didn't realize until just now that I have follicular lymphoma AND DLBCL or Diffuse Large B-Cell Lymphoma. The latter is the aggressive type. The prognosis is not as rosy: Through these treatments, more than half of all patients with DLBCL can be cured; the overall cure rate for older adults is less than this but their five-year survival rate has been around 58%. (Wikipedia)

Last stay in hospital

 I am back in the hospital...for the last time (in this go round). I have a nice view of a pretty park on the campus and beyond that, the boats and water of the Montlake Cut. It's much better than seeing the cars driving up for pick up and drop off.

I have had two nurses who I already have had; I guess that indicates I have been here quite a few times. 

I will not have to get the lumbar puncture or intrathecal chemo this time. I have already had the Covid test twice and will have to get it again in the hospital but it's not bad here--they don't have to go as far in, for some reason. I did get a new shot in my belly yesterday that caused some mild burning pain for a half hour; it was an anti-blood clotting medicine.

The hospital has reverted to its one visitor per day policy. I assume it is because of the rising Covid cases but they don't explain it.

I have ten tamales in the nurses' freezer that I can take home and enjoy, thanks to Maria and her mom!

“Home again, home again, jiggity-jig!”

 Home again and it's nice not to be interrupted at midnight and 4 am (and more if there is air in the line for the chemo and it beeps and wakes me up--then the nurse has to come in and try to get the bubbles out). I slept over 9 hours last night! I love my bed.

My friend Jim is visiting from Arizona and has been helping me out. And he took me out of the city! We went to Kubota Gardens, a quick trip, but such a pretty place. It was the first time I had left the city limits since mid-February when I went to Southcenter Mall to see a movie. He got pizza and salad for take out and after the garden we got milk shakes. I got used to having them at the hospital (but they have protein in them, Carnation Instant Breakfast).

Of course, I had to go into the clinic today, only one day later, to get the shot, a growth hormone, that sometimes causes aches. I've had it before but I can't remember.

One more hospital stay in my near future! And I already have a PT scan scheduled for September.

Back in the hospital, 2nd to last treatment

I am back in the hospital, watching a lot of MSNBC which I don't get at home. Rachel Maddow especially! 

   I have my last lumbar puncture tomorrow, at least the last for this round of treatments. Who knows about the future! As usual the staff woke me up way too many times during the night and then the chemo gets air bubbles and beeps, waking me up and then I have to call for help. It really should beep the nurses' station but they don't have that technology, I guess. 

I don't have the pretty view I had last time. I have a view of the semi-circular driveway for admission and pick ups. I do see some of the campus which is nice.

The hospital has changed its visitor policy! They now allow up.to two visitors per day and they can be there at the same time!

I already had a visitor, Maria Isela, who I tutored when she was 7. She is 28 now and works next door at the dental school in Oral Medicine and came after work briefly. She didn't bring any food; that's a first for a visitor not to bring me food! But she promised me homemade tamales in the future. Her mother makes excellent tamales, she said. Today I ordered two turkey sausage patties and instead I got two scrambled eggs. Go figure! Save me from ordering hospital food!

Besides MSNBC, I'm reading, "Where the Crawdads Sing" which is good and a quick read. My next read will be "Lincoln in the Bardo" by George Saunders. It's a challenge to keep myself occupied but I am walking the hallway "lap" listening to The Band's Stage Fright. They say 10.5 laps equals a mile. Then you can get a paper cut out of sneakers and put it on your door. One patient has about 30 of them. How long has he/she been here to get that many, I wonder?

Chicken soup for the soul

 I'm feeling better than I did after my previous release from the hospital. I'm still not doing much of anything but I did play guitar a bit yesterday and today I had Spanish class via Skype. I am happy to be in my house with A/C as it's way too hot outside. It's 99 degrees and getting hotter tomorrow. I miss the rain. 

I still have Magic Mouthwash which is good because I'm starting to feel that sore jaw and irritated throat feeling. I wonder if it is the mucositis returning. 

I had matzoh ball soup delivered yesterday from my cousin in N.J.! It's a nice treat though I hate all the packaging and no hint on what to do with the ice packs, etc. My visitor today asked what matzoh ball soup was. It's wheat so for a long time I couldn't eat it but now I can. They give you onion rolls and egg noodles so it's really a wheat overdose. Chicken soup has to be good for me, though!

Tedium

 I am home again after my third hospital stay. It's all getting very routine and so tedious. 

It does help to have visitors (who bring food) but essentially I am watching TV and Hulu and reading and eating. It feels like everyone else is having fun, going on trips, going to parties; the pandemic is over but I am still essentially homebound. 

I must force myself to go for walks, at least. I have a fair amount of energy right now but still have some fatigue, despite the chemo Etoposide not being increased by 20% like before. 

Still, it's nice to be home and not be completely exhausted like the last time. I have my exercises to do that Providence Home Care set for me but I can surely do more as they are very basic. 

My prison pen pal has been reduced to palliative care, not a good sign. He has Mantle Cell Lymphoma. He is still pushing himself to read books and run 5 miles despite being in a great deal of pain. Amazing!

Good news

Good news today re: results of the PT scan! The tumor appears to be dead! I still need the treatment (3 more stays in the hospital) but they will use the earlier dosage so I should not get as weak and fragile as I was this last time. Yay! What a relief to get the news!

I was also able to skip the infusion of IV fluids today because I am doing so well but that means I should be drinking 64 ounces of liquids a day. 

My appetite is still good, or not awful, so I think I've gained a few pounds. I'm supposed to eat 90 grams of protein per day which is a lot! A Boost drink has 20 grams of protein and 240 calories so Julie thinks I should be drinking 3 Boosts a day even if I am eating more normally.

Food is not repulsive anymore but I don't feel much actual hunger. 

I am still having abdominal pain but it's so mild that it doesn't bother me enough to take Oxycodone and risk constipation. 

Normal is possible

  It is quite wonderful to feel almost normal again-- a lot weaker, yes, but my mouth problem is better so I can eat better and I am more able to cope with ordinary things like dressing myself. To think that it's hard even just to get comfortable, that you need energy to get comfortable laying down! That's a revelation. 

I am feeling up to doing extras like flossing my teeth, making tea, wearing my mouth guard and eating my usual favorite candy. They all went by the wayside when I was feeling really bad, a week or so ago. I can even imagine cooking. 

But what will happen with my next treatment?