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

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The sweeping, blanket mandate for universal pre-admission and pre-procedure COVID-19 testing across hospital systems largely phased out in May 2023. This shift directly coincided with the official expiration of the Federal COVID-19 Public Health Emergency on May 11, 2023, prompting hospitals across Washington state to transition from emergency protocols to standard, risk-based infection control.

Seattle Times,  May 11, 2023

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?