I just found out I don't go into the hospital until 3 pm on Tuesday, May 4th. Monday I just go to SCCA for a blood draw, a consult with the doctor and to pick up meds at their pharmacy.
I don't understand why. Hey, I'm just the patient!
I will ask, does that mean I will be there into the weekend?
This is my good week! It is so great to have some energy, at last! That it will probably change after Monday certainly tempers my good feeling.
I have done some mending: socks, pants, a shirt. I have ironed a patch over that horrible pillow I bought, with no knowledge of the awful man supporting Trump who owns the company (I have a Joshua Tree National Park patch over the company logo). I organized cords and cables to give to Ridwell, the local recycling company. I found some more stinky things to throw out of my refrigerator. I found my collection of rocks to paint (hidden very cleverly in plain view) and gave away my childhood rock collection to two cute girls from the neighborhood.
I combed my hair with my fingers and yes, it is starting, large amounts of hair coming out. As much as I was prepared, I am still feeling a bit of shock. Not ME! Oh, boy, denial is so strong, so poor a defense.
So less sleep, less pain, less digestive problems: let the good times roll, even if it's only for five more days.
I got a call from the oncologist herself this morning. That's never a good sign.
Sure enough, some pathologist report and conferring with said pathologist has resulted in a change of treatment plans. My cancer is apparently more aggressive (Diffuse Large B-cell Lymphoma) than they thought. They recommend another chemo being added in and, for some reason, it necessitates a FIVE DAY stay in the hospital each treatment day.
I am still waiting for the PA to call me and tell me the details and arrangements. I have never stayed in a hospital that long in my life. I think back in my cross country trip with gf Janet post-college and I had some kind of illness that looked like appendicitis and I was in an Iowa hospital with Dr. John and Dr. Bob, brothers, for a night or two. My condition improved and no surgery was necessary.
This is going to be different. I have lots of questions and no answers, so far. All I know is the test results were called iFish (not a new Apple product):
Interphase FISH (IFISH) analysis is an intriguing molecular cytogenetic approach to study chromosome abnormalities in cancer.
It is very upsetting, of course!
The acronym is now R-EPOCH, kind of an anagram of R-CHOP. The E is the new element, etoposide, which sounds like something from a detective story.
My first hospital stay starts Monday, May 3rd, after a visit with Dr Ujjani at SCCA.
I will be allowed no visitors, probably because King County, WA has had to go back to Phase 2. Still, that seems like the hardest thing.
Etoposide, sold under the brand name Vepesid among others, is a chemotherapy medication used for the treatments of a number of types of cancer including testicular cancer, lung cancer, lymphoma, leukemia, neuroblastoma, and ovarian cancer.
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| Alexander's horrible day has become my own |
Yesterday was better and I felt more human. I was able to do some laundry, pick up some clothes, wash my dishes. Where is hubby when you need him? Always gone...ha ha.
Today I feel even better and was able to down my pills (impossible on Monday) and eat some yogurt and apple sauce (good combo: thanks, Barbara F).
When I think back to how much energy I used to have...and yet I frequently felt too lazy to do so many things like weeding the garden or cleaning! I hope those good times will return soon!
And yes, I am trying to go for a short walk every day (and swing my arms, which is supposed to be beneficial). The air is lovely and makes me feel alive. When the rain starts again I may have a harder time walking but, right now, no excuses!
It looks like it's going to be pretty up-and-down after chemo. If I can guess that far out it seems the main problem is nausea, lack of appetite and digestive problems--either constipation or diarrhea, take your pick! But it is only day four after the first chemo. Also I hope it will get better but who knows. Everyone is different.
So that main abdominal pain and the leg pain being gone IS fantastic but, unfortunately, that doesn't mean I feel good.
I am thankful for my many wonderful friends.
More fun at SCCA! A dizzying array of terms and drugs to remember.
Today Lee drove me for the port and it turns out she, like Julie, has about 3 years experience at Virginia Mason hospital! Lee was a surgical tech. But, as it turns out, she couldn't be with me (why? One word answer you may have heard before: Covid).
We arrived at 10:30 and I had a blood draw and an IV line put in so an hour or so later I could get sedation for the port surgery.
Everyone was really nice, again. My nurse couldn't seem to hear me and got uncomfortably close to me. She said it was because of my mask but she was close enough to me to see her hearing aid (even with her cap on) and sure enough, she had a hearing aid. And the coldest darn hands I have ever encountered!
So now I can nap but I have to sit up for a few hours. My neck hurts quite a bit but only on the right side where the port was installed.
Now I should have three weeks FREE! And it really does seem that my pain has decreased A LOT! Lovely, that is! Maybe I can stop the Oxycodone.
Today was finally my first treatment. It was a LONG day: we got there at 7 am and left at 5:00. The Rituxan infusion was going well for the first 3 or 4 intervals but the next one brought nausea, feeling flushed, stomach aches. So they stopped for a half hour and I got morphine eventually (delayed by pharmacy?) and we went forward and everything else was better.
Julie helped me a lot! It was so great to have her there. Subsequent treatments should be easier or at least shorter.
Now I have a bandage (and big bruises) where the PICC line went in. Getting it taken out was a breeze. Five nurses crowded in to watch, with my permission. I chose not to watch.
I like that they have a "Nourishment Center" and I can request tea, yogurt (FAGE brand), great cottage cheese, etc. I managed to eat some yogurt, a small container of cottage cheese, and Mango Ginger tea (Tazo brand).
Now I have a plastic thing stuck on my abdomen. It's about the size of a small container of dental floss. In 27 hours it beeps and then injects you with the medicine. It is called an on-body injector and delivers Neulasta which is a:
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| Is it butch or Annie Lennox 80's? |
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| Rey is one of my nurses for my first treatment |
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| Ishiguro's Klara and the Sun is my companion, along with Julie taking the photo--maskless! |
Today I found out the first treatment has been changed to Monday morning, bright and early. Is it even light out at 7 am?
Today I saw Dr Ujjani's PA and then I saw a pharmacist and then I saw a nutritionist. I realized the very little I have been eating is a problem. How could I not know this? Is dieting and weight loss so drummed into our culture that I thought it could be a good thing? It's a problem for getting chemo. So I've taken my first anti-nausea pill (why wasn't I taking it before this? I have had queasiness or nausea almost all the time and some vomiting) and it may be too soon to say but I think it's helped already. I downed a piece of toast as if I were a normal person just now! I have Booster (supposedly it's better than Ensure, the stuff my mother was trying to swallow on her way out of this world) getting cold now and the wonderful Julie is going to make her wonderful chicken soup for me soon.
Of course, this all may change Monday but I have medication for it now!
Today I got a ride to the U-WA Medical Center, Special Procedures Unit. It turned out to be the same unit where I recovered for 4 hours from the abdominal mass biopsy but besides a very pretty handmade vase, I saw nothing or no one I recognized.
The procedure was quick but had a big buildup: a half hour for set up, less than 10 minutes for the procedure. What happens to all the plastic and medical waste? Is it all landfill? Julie got a bagel last week at the "bistro" at SCCA and the napkin they gave her was wrapped in plastic. Why? Ridiculous!
Now I have some pain whenever I move my (right) arm. Is it the tape or the plastic or what? But the insertion was pretty painless. The nurse was guided by an ultrasound machine called "Sherlock" and she liked my veins (the nurse, not the machine). The biggest problem was Sherlock was apparently built for men's voices and she would have to repeat her request 2 or 3 times. Finally, when there was no response, she had me press the buzzer to call another nurse in to manually do what she requested. The nurse had never done it and was very hesitant, afraid she might press the wrong icon on the machine. I wanted her to speak in a deeper voice but I kept quiet. I wanted her to call it Alexa and see if it responded.
The biggest puzzler is why I get the PICC line out after the treatment tomorrow and then have to get a port. It made no sense to me but even more importantly, it made no sense to the 3 nurses with whom I have talked about it.
It was so nice to get home and take a nap! I paid for a six pass to the SIFF, Seattle International Film Festival, so I have that to look forward to for the next 10 days.
Today I went 4 hours without Oxycodone and drove myself to U-WA South Lake Union F Building. Seattle Cancer Care Alliance has a suite of rooms in the Diabetes Clinic. It was all new to me though they have been in that area, called the Mercer Mess, for 4 years.
I had a great tech (a woman, which I had meant to ask for and then forgot and had to reject the male tech--if that is indeed what they are called). She was easy to talk to and accommodating but it was still uncomfortable. Not as painful as a mammogram or, god forbid, a bone marrow biopsy, but no fun either.
The oncologist will get the results tomorrow and they will be able to determine if my heart can withstand one of those chemicals in the R-CHOP.
Tomorrow I have to get the PICC line because of my inadequate veins which sounds like no fun either.
And Friday I have my first treatment! In the morning I will talk to a nutritionist, a nurse for a chemo "teach-in" and a pharmacist and then the treatment in the afternoon. Then they will take out the PICC line and then I have to get another Covid19 test (having the vaccine doesn't seem to care) and THEN I get the port (I prefer Madeira but I am not picky) which I avoided in 2013 but it seems chemo requires stronger veins than my difficult ones.
Results of echocardiogram: I have a strong heart! That's a very unscientific way of saying the results showed nothing wrong and we can go ahead with the chemo that is hard on the heart.
I don't understand what it means but my ejection fraction is 74%. I am unreasonably proud of this result. The pharmacist said that is the highest she has seen (and that's good). She probably tells everyone that. 😉
Well, THAT was no fun! The bone marrow biopsy (of my hip) was painful and then not even successful in getting a solid piece.
The nurse tried twice and then asked me if she could try again or get another nurse to try...or did I want to stop there? Definitely the latter but somehow I felt like I should apologize. They can make do with what they got. They needed a centimeter and each sample was only .4 of a centimeter. Couldn't they add them together and get .8?
I was happy to be able to listen to music by Regina Spektor. That helps a little.
I was happy to follow directions and take a walk. It was only a few blocks but my leg starts hurting after only a block.
Wednesday I am scheduled for an echocardiogram and then I might be able to start the treatment, maybe as soon as Thursday or Friday.
The brief look at my veins by Dr Ujjani today made her think I needed a port. I dread that but supposedly it will make infusions a lot easier for me.
4/9/21: Results showed the same high-grade lymphoma in my bone marrow. It is supposedly good news that there isn't a different kind of cancer in my bone marrow.
