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.

I would rather talk about potatoes, please

I went to see my doctor about lower abdominal pain and after I winced when she pressed on my upper torso she rushed me in for a CT scan and blood tests. When she called me back I was walking downtown and when she asked me where I was and whether I could talk (i.e., listen), I knew it was not good news. I found a place to sit and she told me I have an abdominal mass the size of a medium sized baked potato. Why baked, I wondered? Does that make a difference in the size or do doctors think a person can only imagine a potato she is about to eat? 

 But, seriously, she apologised four times so I knew she thought it was bad news. She thinks it might be a recurrence of lymphoma. I still don't know what the lower abdominal pain was but she guesses it's from diverticulitis so I am taking antibiotics on her recommendation. That pain has lessened, at least. I was having so much pain I couldn't sleep so now I am once again taking Trazodone to help me sleep. 

 I have to wait a week and a half to see my oncologist because she wants a PET scan to see if it is a benign mass or if it is actively growing (I think). A biopsy might follow that. The night after getting the news I felt resigned. I lay in bed and thought of all the many things around me that I own that someone would have to deal with, dispose of, etc. Now a feeling similar to the first discovery (really, that was the second) of lymphoma is setting in. It seems unreal. How sick could I be if I mostly feel pretty good? Not good enough to clean my kitchen floor (ha ha) but good enough to start a daily weight loss program through a YouTube channel. No, I don't have night sweats, one of the things they always ask me about at my annual checkup. I am eating--although I do get full more easily and don't feel much hunger. My general practioner assured me that it is very treatable, not like pancreatic cancer. She probably knows that is where my mind goes after my mother died five months after diagnosis. My cousin's husband died at 67 only six weeks after diagnosis. So short a time! 

 It is odd how I measured a potato and it gave me a hankering for potato hash browns which I made this morning. Yummy.

The actual size of the mass was: 10.9 x 8.9 x 9.1 cm