Second hospital stay

 My second hospital stay has been okay. Except for the surprise of having to get another lumbar puncture to put more chemo in the spine, it has been predictable, being hooked up constantly with the exception of changing bags or a brief minute or two to change my shirt. 

It has been boring, stifling, the lack of anywhere to walk to and no fresh air is awful, but none of this was a surprise.  

I slept only one hour my first night here and last night, my third night, I slept 10.5 hours! I woke up with only 5 minutes to order breakfast.

I have one or two more nights before I can bust out. My immuno-compromised state worsens 10 days after the first chemo is infused. But my numbers are pretty good! 

Back to hospital

 I'm about to go into the hospital for the second round of chemo, REPOCH (pronounced different ways). I am hoping it will be for 5 days rather than 6 days but it all depends on when they can start the infusion, how soon after I arrive and when they get me in the hospital room. 

I have been feeling pretty well, generally. I am still trying to figure out the oxycodone dosage; the oncologist told me yesterday to take it only with pain, which seems to contradict what others have told me.  So I skipped the oxy and the Trazodone and slept fine last night. 

Maybe there is less pain and I don't need the oxycodone at all!

I am dreading going into the hospital, of course. But being able to have visitors (one per patient) will make a difference. I hope it makes time pass faster and that food will be better for me than having to depend solely on the hospital food. 

If it all feels routine and boring, that's something to strive for, I suppose!

TLS and the ISB

 Today was another short visit to the clinic for blood tests. All is well; the oncologist recommended I eat foods rich in potassium rather than take those awful pills. Can do!

After all this time, I am finally getting a handle on pain management, with help from Julie and "the team." That's what it really is all about. So I don't have breakthrough pain between doses, the nurse will consult with the doctor. Perhaps I can shorten the time between doses, take something else or even more of the same (oxycodone).

So there is nothing unplanned or happenstance about the pain. It is always there unless I take the right meds and at the right time. It's all about:

Tumor lysis syndrome (TLS) is a condition that occurs when a large number of cancer cells die within a short period, releasing their contents in to the blood.

I think anyone who hasn't been through chemo with a loved one or has been through it themselves has an assumption which is that we assume we know how we are going to be feeling in a day or two. If I feel good today, I should feel good tomorrow or even further out. This is such a luxury. To me, if I feel good, this moment, that's all I have. I can't count on feeling good the next hour. That is a very Buddhist way of thinking but it also reminds me of the song, "This Moment" by Incredible String Band. ISB is comforting me, as is Buddhism and Robert Beatty of the Portland Insight Meditation Community.

This moment
Is different
From any
Before it
And this moment

Is different
It's now
And if I
Don't kiss you
That kiss is
Untasted
I'll never
No never
Get it back
But why should
I want to
I'll be in
The next moment

Sweet moment
Sweet lover
Sweet now
The walls of this room
Are different from any before them
They are now
They are now

The air that you breathe
Is different from any before it
It is now
It is now
You may think that life is repeating
Repeating 
You may think that life is repeating
Oh no 
Each moment
Is different
From any before it
Each moment
Is different
It's now

https://www.youtube.com/watch?v=DJ17vGtQSRs

Fatigue and energy level

 I'm getting into the new routine. It was bad enough spending nearly six days in the hospital (and having to do that four more times) but then having to get to the clinic THE DAY AFTER my stay in the hospital for the whole day was so hard. They found at the first blood draw that my potassium was low (risk of heart attack) so I had to get a 2 hour infusion of potassium. Okay, but it took 2 hours to get the appointment so I was there with the ever patient Julie from 11:00 to 5:30.

Today I had to go again, every Monday and Thursday! But this time my potassium was normal and I got to leave the clinic at noon. That's the shortest time I think I have ever been there. It only cost $2 for parking!

When asked to rate my fatigue on the usual 1 to 10 scale, I gave it a 6. At this minute I have a bit more energy (or I wouldn't be typing this) and feel like it is a 3. But it obviously is very up and down. There is no way to plan unless it is consistent for a day or two, I think. 

Eating is still a problem but if I have fewer horse pills to dread taking, that helps. 

I have canceled so many things because I just don't know if I can get up off the couch. Meanwhile, the great weather and lightening of Covid restrictions are leading most of my friends to small outdoor trips to see the flowers. That's hard, being stuck at my house, but what can I do? I can't do what I can't do, and with increased restrictions for being immuno-compromised, I have to be careful. 

Flowers ban

  Well, I wasn't home for very long! I spent most of yesterday at the clinic because they found out my potassium levels were (still) low which can cause heart problems. So I had to have an appointment for a 2 hour infusion of potassium and it took 2 hours to get that appointment. I was there with a very patient Julie all day.

I didn't even feel up to walking around in the 2 hours before the infusion.  They gave me a room and I dozed on the exam table. On such a gorgeous day!

Then we got to my house and I dozed some more after Julie took my houseplants outside and I passed my first bouquet (of 3 months) from my neighborhood florist to my very nice neighbors. That's a hard one--no live things in my house. Except for me.

Don't buy me flowers! 

Home again, hooray!

 Wow, I'm finally home. It was feeling like I was in the hospital forever. I was getting depressed. The second room I was changed to midweek didn't even have a circuit you could walk around and a bench to sit and watch the view.

On the other hand, it didn't have the incredibly noisy HVAC system, on 24 hours a day!

Things that are lovely: 🌲breathing fresh air! Not trailing 7 feet of tubing and a pole and a 9 feet electrical cord attached to the pole everywhere I go! Not being dependent on the wretched food service. Having more clothes to wear and not having to have the holy port open and available at all times (it is not "accessed" now, at least until tomorrow for labs again). And not having to pee/poop into a "hat" (I/O monitored) and asking the nurse to empty it after she measures my output. 

On the other hand, I spent over $100 at the pharmacy.  One of the medications was $85 and was only covered by my drug insurance for a dollar! So the meds continues, on and on, or that's how it feels.

It is nice to be home and I got some gardening done.  I came home to a bouquet of flowers! I unpacked and it was nice to come home to a clean home (Julie's friend cleaned it for me)! There is a lot to do still but I was getting so bored in the hospital. 

They did take good care of me in the hospital. The staff was excellent. If they could only improve that awful food service!

Lumbar puncture

 I had an unsuccessful lumbar puncture yesterday.  I told them I had an awful and unsuccessful experience back in 2005 for Lyme disease.  A few weeks ago I had an unsuccessful bone marrow biopsy. But did they listen to me and do the puncture aided by x-ray? No, of course not.

So I am scheduled for this afternoon for radiology to get involved. They want to push some chemo into my spine. 

Fluoroscopy is a continuous X-ray that shows images on a computer monitor. This is used during a lumbar puncture to help guide the needle insertion between two lumbar vertebrae and then into the spinal cord.

At least it wasn't awful, people yelling at me (as I recall though now it seems unlikely) to bend over more like some horrible rape scenario. The lidocaine shot pinched and there were many shots. 

I hope it goes better today. Overall, I am feeling pretty good! I get a razor cut and a shower today!

Food service problems

 I went for a walk down the hall yesterday but, unfortunately, I went outside of the oncology unit and got shooed away. I sort of knew that I couldn't go off this section but I just couldn't accept it and I wanted to see more art on the walls.  They have great art here.

 Unfortunately, because we started so late on Tuesday night at 10:00 p.m. I have to be here till Sunday so this is only day 3 out of 6 days. My hope is that I can go home early Sunday.

 I am so sick of the bad food here. Yesterday I ordered a half of a tunafish salad sandwich with lettuce, tomatoes and pickles. When I got it I was pleased to see the correct toppings and good wheat bread but when I took a bite I knew it had very little tunafish. In fact, it had none! So I had to call down to order tunafish.

  The only thing that seems really safe to order is that Nancy's brand of peach kefir. Today for breakfast I ordered Cheerios. They can't scew that up, can they? (Well, they gave me whole milk as requested and also 2% which I didn't request. When I asked her to take it back she said she would have to throw it away.).

Last night in desperation I joined DoorDash so I could order pupusas and fried plantains from a local pupuseria. The nutritionist said I couldn't eat the curtido but it really isn't coleslaw with mayonnaise as she must have thought.

 Unfortunately,  I ordered more than I could eat which is not saying very much so I had to beg the nurse to break the rules and put the leftovers in her staff refrigerator. As you might guess the rule is that no food from a patient's room can be allowed anywhere else except garbage. That makes me feel good...no way an environmentalist can also be a patient. They don’t even recycle cans and bottles! I will bring mine home. 

 I think for at least the time of the chemo I will not be able to eat raw foods like mayonnaise that comes from outside of the store such as a restaurant or a home. I wonder if the rules are similar these pandemic days as for pregnant women?

Interrupted sleep and ketchup

My first night in the hospital was okay. I am not really feeling any pain except a light abdominal pain (I gave it a 2 out of 10); the CT scan of my brain was painless. The sticking into my port was painless. 

What I find difficult is being attached by the port and the oxygen through the nasal cannula all night. It makes going to use the bathroom, a mere 10 feet away, such a production! 

I do plan on going for a walk around the hallways. I will be zooming down the aisles! I got zoomed in a wheelchair by a nice young man to the CT scan room where the tech and I talked about the hassle of nose and septum rings. I was glad I no longer had to take mine out like in 2013.

The food from their cafeteria has been mediocre, as feared. I got a Caesar salad yesterday while waiting (arrived 2:00, not admitted until 5:30) for the one available room on a different floor to be cleaned. The croutons were a spongy soggy mess. Last night a few minutes before they closed I ordered a fail proof butternut squash soup that had no flavor. I couldn't eat it and the nurse made me a PB&J sandwich.  Yummy.  Today for breakfast everything was lukewarm; the eggs were OK and so was the turkey sausage patty but how do you mess up home fries? Accompanied by ketchup packets, so optional, but what about Tabasco? Yuck, like childhood meals when I smothered all eggs of any kind with ketchup or I would get sick. That is the only example of me being a fussy eater that I can remember. I don't count not being able to eat tongue.

Managing to sleep was difficult but I probably slept about 7 hours. The RN came in at midnight and at 4:00 to take vitals. So annoying!

For all you McCall Smith readers out there, his new book in the 44 Scotland Street (Bertie) series, A Promise of Ankles, is keeping me amused so far. What a great title. It must be about Angus' dog Cyril, a dog with a gold tooth, and his mysterious urge to nip Matthew's ankles. Angus has trained Cyril to lift his leg at the mere mention of the Turner Prize, an annual prize given to a British visual artist. Angus feels rejected by the Turner Prize judges, obviously. That is an interesting Wikipedia article on the Turner Prize!

R-EPOCH today

 So I go into the hospital for five days today. After talking to my oncologist yesterday, I feel a little less worried. She doesn't expect me to feel sick in the hospital; rather, it will start when I get home. Good? It's hard to know how to feel about that. 

The added "e" in the new formula, from R-CHOP to R-EPOCH:

• R – Rituximab
• E – Etoposide Phosphate
• P – Prednisone
• O – Vincristine Sulfate (Oncovin)
• C – Cyclophosphamide
• H – Doxorubicin Hydrochloride (Hydroxydaunorubicin)

The E is the etoposide. If it were only that! I also am getting a slew of antibiotics because I will be more susceptible to getting illnesses; I have to get a brain scan before I get the dreaded spinal tap to see if the cancer is in my spine (if it is, they throw some chemo at it). 

If I get home Saturday, I have to go back a day or two afterwards to get more lab work. If I am getting dehydrated,  I can ask for IV hydration at one of these twice weekly visits. 

Prognosis with R-EPOCH: 85% of her patients are still alive 4 years later. 

Who knows, maybe I will feel well taken care of while in hospital. I still wish so much that friends could visit me!

Other difficult news: I will have to check in with Dr. Ujjani every 3 months after these 5 treatments are over. As long as there is a pandemic, she advises that I not take any long flights since my immunity will be lowered. Will I ever make it to Ireland?

https://pubmed.ncbi.nlm.nih.gov/27183909/