After six rounds of chemotherapy, life started to move very fast.
I got stressed not only from the chemotherapy side effects, but from things to take care of: my computer crashed so I was not able to write a blog and newsletter for October; one of my dog family got sick and had to have surgery (she is recovering very quickly), and there have been more stressful incidents which I am not going to write about here.
Because of all the stress, I changed my PET scan date so I could feel all right while taking it. However, this was my third PET scan so I had gotten used to the procedure and everything went smoothly.
My oncologist, Dr. Mead, said it would be about three days to get PET scan results and she would contact me about them.
After five days, I still hadn’t heard from her so I was anxious and sent her an email.
She replied very quickly and said she had called me twice, but hadn’t wanted to leave her message on voicemail. Uh oh. She explained that there was an area on the PET scan she worried might be residual lymphoma. She wants me to do a biopsy and she asked me to come to see her next day.
My body immediately felt tight and my mind got dark. I was really hoping that I would receive “No more cancer” news, but the reality was not so simple.
It was a long 24 hours.
Eric and I went to see Dr. Mead.
She was not smiling like the previous times I’d seen her; I felt that she looked sad when she came in. She showed me PET scan test results and explained them to us carefully:
Here are three different PET scan results I’ve had in 2017:
- April 27: Tumor size: 138mm x 82mm. SUV max 35.6
- July 5: Tumor size: 57mm x 35mm. SUV max 2.4
- November 8: Tumor size: 35mm x 32mm. SUV max 4.0
You can see that the tumor has only shrunk, and apparently a small amount of necrotic (dead) material left after chemo is not unusual, so the tumor size didn’t bother Dr. Mead. It was the SUV numbers that gave her concern.
So what is SUV?
It means Standardized Uptake Value, and it’s a measure of the amount of glucose that the affected area is taking up during the scan. The more glucose being absorbed, the more active the area is, and because cancer is very hungry for glucose, that can be a sign of cancer. The higher the SUV, the more aggressive cancer.
Dr. Mead explained that the normal limit of SUV is 3, so when I took PET Scan in July it was already within a normal range and Dr. Mead was so pleased with that result. However, in November, the SUV went up to outside the normal range, to 4.
Now 4 isn’t a very high number, and it could mean two things: either the Diffuse Large B-Cell Lymphoma (DLBCL) Primary non-Hodgkin in my liver is very aggressive and it hasn’t been completely eradicated (yet), or it’s simply inflammation. Inflammation can produce higher than normal SUV numbers. In order to find out and make sure I must get another biopsy. Ugh.
I mentioned my first biopsy in my June 8th blog.
I had to be in a bed because of pain for one week and the pain lasted for more than three weeks (a liver biopsy has to go through ribcage so the side effect is a pain).
I am scared to take the biopsy so I told Dr. Mead about how I feel.
She said, “You were already very sick and weak the last time when you had the biopsy so hopefully this time you won’t have the same pain experience.”
She might be right because I am feeling better now than the last time I had the biopsy so I am encouraging myself to take the biopsy.
Dr. Mead explained also what would happen after biopsy:
If it is only inflammation, then I just do another PET scan six weeks later.
But if it is a relapse of the lymphoma, then I have to do a different chemotherapy.
It will be very strong so it has be done only in the hospital and I would also have to do a stem cell transplant (bone marrow transplant).
It is scary to hear about a chemotherapy that’s even stronger than the one I just had!
People have told me how strong I am, how positive I am, and how I am inspiring them, but inside, I feel so scared.
I do not feel strong and positive.
I am not inspiring myself.
When I didn’t get a good PET scan result, I immediately blamed myself: “What did I do wrong?
Is it that oily Chinese food I ate when I went to Japanese friends gathering?
Or is it that vegan donut I ate?
Or vegan chocolate cookie I ate at Cafe Gratitude when I had English speaking friends gathering?”
Eric was in shock when we came home from Dr. Mead office.
He sat down and looked far away. I saw that he was not able to do anything for a while.
I did not want to see him suffer, so I said: “I am sorry that I am not healthy, or young (I am 12 years older than him) and am a bitchy wife.” That word caught his attention and he looked at me said “bitchy?” and smiled.
I talked to my good friend, Jessica Porter, who has been helping me with her friendship and hypnotherapy.
She, of course reminded me “one day at a time” and not to blame myself.
“We have all seen what you’ve gone through and no one else is blaming you”, she said.
I realized Thanksgiving is coming soon.
It would be perfect if I had good news of my recovery here for Thanksgiving.
So it’s not a perfect Thanksgiving, but no matter what, I have one day at a time to live right now and I am thankful for my life with Eric and our animal family.
I received a list of appreciation from a new friend, Michael Sieverts, who teaches Qigong for the Cancer Support Community. He said if your appreciation list seems too small, change what you can so that you can appreciate more. We need to spend at least as much time on cultivating our soul’s expansion as we do on what causes us suffering.
I really like what he sent me.
This Thanksgiving I appreciate whatever goodness life is giving me: friendship (that includes you); good health; plant-based macrobiotic foods; interesting career; my love for animals; interesting hobbies (organic garden, photography, writing, knitting, bead jewelry, calligraphy etc. ); good movies/ books/shows/theater, and whatever gives me joy (this morning joy is writing this and enjoying morning sun with my cat, Tin Tin. I am wearing my favorite flannel PJ and organic thick winter socks).
I could go on and on with my appreciation list . . . I hope your list is long and gives you joy.
Thank you so much!
Thank you for your prayers and continuous support.
We are grateful and invite you to help us at this time by YouCaring Fundraising to Support Sanae’s Recovery from Cancer or purchasing our books directly from us to cover my medical expenses.
Here are our books:
My post mailing address for sending your card, gift or check:
2610A 23rd St.
Santa Monica, CA 90405
I will not be able to personally reply to each person, but I promise I will read everyone’s messages, emails, and cards.
Love, Sanae 💖