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?

Numb is good

I'm home, friends are coming to visit me and do minor chores. I have some energy back and am getting more IV fluids in the next 5 days until my return to the hospital. So I should be good though it takes so much time getting the fluids, each time a minimum of 2 hours. But what else do I have to do? My companion can leave and return.

My weight has gone up a few lbs. I am 131.8. I have been trying to set an alarm to eat or drink Boost every 2 hours. 

The struggle with food continues but this Magic Mouthwash from the compounding pharmacy is wonderful. I have mucositis (another lovely side benefit of chemo) which makes it painful to eat and the mouthwash numbs things up nicely.  I can only take it every 6 hours so I set my timer for that, too!

Caring Bridge site

 If any of you reading my blog live close enough to help out, here is my Caring Bridge site where folks can sign up for a visit or tasks.

https://www.caringbridge.org/profile/33569100

Crisis

 I had a bit of a crisis and am staying at Barbara's in Seward Park for a few days. 

She is taking great care of me.

I went to the Clinic for an appointment with the nutritionist and they sent me to get an IV infusion because my blood pressure was dangerously low.  I felt better after that.

I brought my cane and then asked for a wheelchair.  Leslie, the PA for Urgent care, told me the scary truth: that I had to gain about 12 lbs in the next two weeks or go into a nursing home or the hospital. I can't keep losing weight and expect to fight the chemo treatment. 

So Barbara and Julie are setting up Caring Bridge for more care. It's so hard to ask for help but now I have to; I am neutropenic* and more vulnerable. 

Neutropenia (noo-troh-PEE-nee-uh) refers to lower-than-normal levels of neutrophils in your blood. A neutrophil is a type of white blood cell that your bone marrow primarily makes. White blood cells in general, and neutrophils in particular, fight infections in your body. Neutrophils destroy germs that cause infections, like viruses and bacteria.