Evusheld SOON!

 Is there hope? For the 3% of the population who are immuno-compromised (about the same as the number of true blondes), Evusheld is very encouraging.  When and if I am able to get the two shots, I would be more comfortable going out, eating in a restaurant,  even going to a movie or play! They say it takes 2-4 weeks to be effective. 

Seattle Cancer Care Alliance said: There is unfortunately a very limited number of doses, but we are currently working out the logistics of Evusheld and will send announcements as soon as possible!  A woman (on Facebook) in FL got it from her local health department. 

Update 12/28: SCCA called me to ask if I wanted the Evusheld! I have to get the PCR test and then in a week or so I am tentatively scheduled to get the 2 doses (in the buttocks). That means I will be able to go to a movie or restaurant for the next six months! This is exciting!

There's a new drug to prevent Covid-19, but there won't be nearly enough for Americans who are eligible

By Elizabeth Cohen, Danielle Herman and Justin Lape, CNN

Between 40-44% of fully vaccinated people who have ended up in the hospital with Covid-19 were immune-compromised, according to small studies cited by the CDC.

Updated 10:05 AM ET, Fri December 24, 2021

https://www.cnn.com/2021/12/24/health/prevent-covid-19-evusheld/index

December PET scan

 Good news! I have more of a watch and wait situation, like with the follicular lymphoma I had in 2013. The only brightness (suspicious) on the scan was the same thing that the doctor pointed out from my scan in September,  post treatment.  It went from 2.4 cm X 1.5 cm to 1.8 cm X 1.9 cm. So smaller and bigger, or just a different shape. As before, the only way she could figure out if it is lymphoma is by doing a biopsy but it is hard to get to.

Meanwhile, it might take a month to get an appointment but I can get the port taken out! 

Next PET scan is in 3 more months. I was hoping for 6! 

As far as getting a COVID-19 vaccine that actually is effective,  her experience is that it takes a year after the Rituximab.  I was hoping for 6 months which would mean February. Now it is August! No planes or crowds until then? 

Meanwhile, as of today, I am not taking any drugs, once again! It feels so good!

PET scan

 My next PET scan is in two weeks. I am nervous. How could I not be? My hair is growing in nicely and my eyebrows and eyelashes are full. Less desirable is that I got a lot of facial peach fuzz and had to shave but it looks like once was enough.

I have to stop "catastrophizing" and thinking the worst is going to happen.

Meanwhile,  my prison pen pal Dominic died of mantle cell lymphoma after a lot of treatment. He was only 55. I tried to be his POA but it didn't work. Too late! So sorry, Dominic! Lesson learned is if you are someone's pen pal, that is all you are and all you should be. 

Some of his art can be seen on the blog I set up for him (click on my profile below to see my blogs and to switch to it).

Except for an occasional ache or pain, I am feeling good! Walking all the way around Seward Park with only one rest break and no cane!

Three months after treatment

 It has been 3 months since my last treatment and I am getting some strength back.  I walked 10,000 steps yesterday and helped with a forest planting project (though that was hard)! I just finished a two week housesitting job, taking care of two cats and a dog.

However, my hair is still almost non-existent (except in places I don't want it such as inside my nose!). My fingernails are still a mess, shredding and layered. I still have some neuropathy in my fingers and toes, worse in my right hand than my left. 

I am following Chris Wark's Healing Cancer Coaching Program which advises fresh organic fruit and vegetables juicing and salads and many other things. What I don't like is his insertion of God and praying but I can substitute meditation and the Buddha. (www.chrisbeatscancer.com)  Can anyone recommend a naturopath to help me? 

Covid antibodies test results

The number 14 that I got from the blood test on Thursday for Covid antibodies is dismal if good immunity is 250. So I still have to be careful, definitely! Here is a message from the clinic:

RE: Covid antibodies

Please see the response from Megan, our physician assistant (at Seattle Cancer Care Alliance)

 

"So it looks like she did have a response to the vaccine, as evidenced by the 14 number at the top and the positive spike antibody. We don't exactly know though what this means, though, in terms of how protective this is. I would say that number is on the lower end but again that doesn't really mean anything (right now). The negative result at the bottom is the test for active covid infection and she didn't have that at the time of this test. I am happy to talk with her this week if she wants to discuss these results further. All of this said, positive antibodies does not mean "green light: GO". Especially with the new variants, it is important that she is still vigilant, follows CDC and DoH guidelines including, frequent hand washing and wears a mask when inside and in crowded places and avoiding unvaccinated or those who are showing signs/ symptoms concerning for COVID."

From the Leukemia & Lymphoma Society's study:

• Treatment with anti-CD20 antibodies, such as rituximab and obinutuzumab in the 6 to 12 months prior to COVID-19 vaccination blunts antibody response. Many of these patients have no detectable COVID-19 antibodies, even after a third dose of an mRNA vaccine (Moderna or Pfizer BioNTech).

The new study, drawing from a nationwide dataset gathered by the National COVID Cohort Collaborative, covered a sample of COVID-19 patients that was over 100 times larger than the preliminary study. The study found that overall, hospitalized COVID-19 patients taking immunosuppressive drugs did not face significant increases in the risk of COVID-19 death compared with non-immunosuppressed hospitalized COVID-19 patients.

Of the 303 drugs examined in the study, the authors found that one drug, rituximab, a monoclonal antibody preparation that targets antibody-producing B cells, was associated with a substantially increased risk of death compared to medically similar hospitalized COVID-19 patients. Rituximab is used for serious medical conditions like cancer or an autoimmune disorder that has not responded to other treatments.

https://publichealth.jhu.edu/2021/outcomes-for-hospitalized-covid-19-patients-taking-immunosuppressive-medications-similar-to-non-immunosuppressed-patients?fbclid=IwAR1DCkZCQP7h2_EEBy3QLvF1h2rWglC5WGZd2aT0NA0K91atjLNwE_W5yyY

Scan results

Well, it's not great news but it's not bad, either, in my opinion. 

The main mass still looks good but there is a lymph node in my belly that has increased in size from 1 cm to 2.4 cm and brightness. It could be temporary inflammation but the oncologist can't tell. Surgery would be difficult to get a biopsy of it since it is deep in the belly. She wants to do another scan in 3 months unless I have belly pain or other bad signs of a tumor. The scan report said it was a Deauville 5 (on a scale of 1 to 5, with 5 being the worst)!

She doesn't want to take the port out yet so it has to be flushed in 6 weeks. 

I found out the Rituxan I got lasts in the body for 6 months to a year! So the Covid19 booster probably didn't work. I still want to get the Covid antibodies test. 

She advised me to get a flu vaccine although it too may not be effective.  

My white blood count is still a bit low but my neutrophils are normal so I can get fresh flowers again and have indoor plants! 

Booster

 I got the booster shot (Pfizer) and had no side effects except a sore arm. In 3 days I will be covered. But will I be able to do normal things? Between Delta and chemo I guess I still have to be careful. But my energy level is slowly improving. I walked around Seward Park (2.5 miles) with friends and breaks to sit on benches! Can I get fresh flowers? Eat blackberries? Do foster dog or cat care?

The PET scan is in a week! Then I hope to know more. 

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?

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.

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/

Slight change in schedule

 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? 

Let the good times roll

 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.

Hospital stays in my future

 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.

Bad day

Alexander's horrible day has become my own

 Monday was that day for me. Well, Sunday evening, too. The idea of eating was beyond me. Vomiting was ever present. All the lovely food (and the tiny bits I could manage to eat) and the fine presentation  at book group Sunday night: up and out. Sorry if that is TMI.

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!

Post chemo blues

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.

Bow to the port

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.

First chemo, at long last

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:

Bone marrow stimulant

It can help the body make white blood cells after receiving cancer medications.

I got home and felt good for about 20 minutes. Then I had a very painful and difficult bout of constipation. Time to take more Miralax! 

I will manage to take a shower tomorrow, I hope!  I am way overdue! 

Oh, and my new haircut, preparing for losing it all.

Is it butch or Annie Lennox 80's?

Rey is one of  my  nurses for my first treatment

Ishiguro's Klara and the Sun is my companion, along with Julie taking the photo--maskless!

Chemo has been delayed

 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!

PICC line has safely landed in my veins

 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.

Echo

 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. 😉

The calculated ejection fraction, as determined

by the biplane method of disks, is 74%.

Ejection fraction (EF) is a measurement, expressed as a percentage, of how much blood the left ventricle pumps out with each contraction. An ejection fraction of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat.

Bone marrow biopsy

 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.

Diagnosis, prognosis, sunny day and no appetite

 So, I now have two procedures scheduled before I can start treatment. I have high grade lymphoma (not the low grade I had before. Unlike gasoline, high grade is worse) and the recommended treatment is R-CHOP:

R-CHOP is a combination of five drugs that work together to target and kill cancer cells. It’s a first-line treatment for aggressive non-Hodgkin’s lymphoma, a group of blood cancers. (WebMD). 

So I will get Rituximab like I did in 2013. I had very little reaction to it. It is the chemo that scares me but there should be a lessening of my pain after the first week.

After about 3 weeks I will probably lose most of my hair and have to shave my head. 

I will have 6 treatments, one every 3 weeks. I figure that takes me to the end of July. Spring AND summer? That's not fair!

The two procedures are scheduled for this Friday and next Wednesday. So the earliest I would be able to start treatment is the end of next week but I don't have it scheduled yet. First I will get an echocardiogram to make sure my heart is working well. One of the drugs is hard on the heart. The second procedure is a bone marrow biopsy to see if the cancer is in my bone marrow. 

In the short run, I got a refill of oxycodone. In the long run, if I am in the 90% that this works for, great! But it may reoccur in a few years. That is a depressing thought!

A medical procedure & history lesson

Okay, I got the biopsy and now there is more waiting in the near future. It might take 3-5 days (for what? For the pathologist to decide what the mass is? For the oncologist to get the results?).

It was a long day but everyone was really nice and helpful. I had a disturbing experience with a medical assistant. I asked where she was from and when she said Tigray. After she saw my blank face (except for the mask hiding it), she launched into a recounting of the horrors of the Tigray war with Ethiopia and the degradations and violence against the Tigray people where all her family still lives. I felt bad for her but I also didn't feel it was appropriate; I was a captive audience and the material especially details of rapes was really not what I needed to hear to prepare for the procedure. She mentioned the word "genocide" a few times.

So I did complain about her to her supervisor. I felt like a "tattletale" and resented being put in that position. The nurse manager was very surprised but very kind and receptive. I hope she handles her talk with the medical assistant well. 

The Fentanyl and Versed sedation was nice! I had very little pain--or not that I remember! I was brought up to nursing to be monitored for four hours and had another delightful nurse. But after eating some cheese and crackers (maybe too quickly) I felt nauseated and they talked about how I might need a prescription for an anti-nausea drug. It passed and I feel fine. I am just exhausted from a long day in the hospital (8 am to 3:30 pm) and an almost sleepless night (I slept under 2 hours).

Biopsy of mass soon!

Finally, my biopsy is scheduled! It is this Friday, the 26th, and will take most of the day because I will have to be sedated (that song from the Ramones, "I Wanna Be Sedated" keeps going through my head). 

I have received 3 different check in times, 8:30 am, then a text saying 9:30, and then on the phone I was told 9:00, and this morning the scheduler told me 8 am. Can I just take my pick? 😉

As for getting the results, the radiologist never (I feel safe saying "never" although I could be wrong) tells you anything directly at the time of the procedure.  My doctor has to tell me and that will take 1-7 days and be done by TeleHealth. 

This is what MyChart says is the reason for the biopsy (BX):

CLINICAL INDICATION:
Follicular lymphoma with large retroperitoneal mass on PET/CT, evaluate for
high-grade transformation.

It's the first time in these recent months that I have heard or read the ominous word, "transformation."

I have a kind person to pick me up and take me home as required. She will stay with me for a while (turned out that wasn't necessary). Julie brought me delicious homemade chicken soup the next morning! Such kindness bowls me over! Maybe it shouldn't but I am not used to such things.

Plus I have had to schedule a COVID-19 test for tomorrow in order to get the biopsy (the test was my first and was easy, fast and just ticklish and weird).

Yikes! Fun and games. 

Is there an end in sight to my abdominal pain? It feels far away.

Is Rituxan once again in my future?

So it IS cancer. 

The PET scan showed the mass to be very bright which would not happen with a benign mass. "It is much brighter than I would expect with a low grade follicular lymphoma," Dr. Ujjani said. But she doesn't know what kind of cancer it is-- if it's a new cancer or a reoccurrence of the follicular lymphoma. 

So she is ordering a biopsy which I have to go to the University of Washington to get, maybe next week.

Then I go back to Dr. Ujjani at Seattle Cancer Care Alliance to discuss treatment. She said that might be rituximab and chemotherapy.  I had Rituxan back in 2013 and it was a breeze but chemotherapy scares me. 

But anything to stop the pain! Since Tylenol and Ibuprofen don't touch the pain, she wrote me a prescription for oxycodone (autocorrect changed that to "oxymoron"--get with the times, Ms Autocorrect!). That scares me, too. 

Vaccine side effects

A friend told me temporary swelling of lymph nodes after the vaccine is not uncommon. Perhaps I should wait 6 weeks? But an abdominal mass of 4 inches is not like armpit swelling. Still, it's a good thing to keep in mind!

“The lymph nodes i
n your armpit area that we see on your mammogram are larger on the side where you had your recent Covid-19 vaccine. Enlarged lymph nodes are common after the Covid-19 vaccine and are your body’s normal reaction to the vaccine. However, if you feel a lump in your armpit that lasts for more than six weeks after your vaccination, you should let your health care provider know.”

https://www.nytimes.com/2021/03/01/health/covid-vaccine-lymph-nodes.html

Do I have it or don't I? Time will tell...and a PET scan

 

Signs and Symptoms of Non-Hodgkin Lymphoma

Non-Hodgkin lymphoma (NHL) can cause many different signs and symptoms, depending on the type of lymphoma and where it is in the body. Sometimes it might not cause any symptoms until it grows quite large.

Having one or more symptoms doesn’t mean you definitely have lymphoma. In fact, many of the symptoms listed here are more likely to be caused by other conditions, such as an infection. Still, if you have any of these symptoms, have them checked by a doctor so that the cause can be found and treated, if needed.

Some common signs and symptoms include:

• Enlarged lymph nodes
• Chills
• Weight loss
• Fatigue (feeling very tired)
• Swollen abdomen (belly)
• Feeling full after only a small amount of food
• Chest pain or pressure
• Shortness of breath or cough
• Severe or frequent infections
• Easy bruising or bleeding

Some people with Non-Hodgkin lymphoma have what are known as B symptoms:

• Fever (which can come and go over several days or weeks) without an infection
• Drenching night sweats
• Weight loss without trying (at least 10% of body weight over 6 months)

Positron emission tomography (PET) scan

For a PET scan, you are injected with a slightly radioactive form of sugar, which collects mainly in cancer cells. A special camera is then used to create a picture of areas of radioactivity in the body. The picture is not detailed like a CT or MRI scan, but it can provide helpful information about your whole body.

If you have lymphoma, a PET scan might be done to:

• See if an enlarged lymph node contains lymphoma. 
• Find small areas that might be lymphoma, even if the area looks normal on a CT scan.
• Check if a lymphoma is responding to treatment. Some doctors will repeat the PET scan after 1 or 2 courses of chemotherapy. If the chemotherapy is working, the lymph nodes will no longer absorb the radioactive sugar.
• Help decide whether an enlarged lymph node still contains lymphoma or is just scar tissue after treatment.