slmjim - T-cell lymphoma - we're guardedly optimistic
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slmjim - T-cell lymphoma - we're guardedly optimistic
11 Mar 2026 08:06 - 11 Mar 2026 09:05
Executive summary:
I was diagnosed with a quite rare form of nasal / sinus T-cell lymphoma early Sept., 2025, resulting in immediate surgical excision of a lesion approx. 20mm x 20mm x 7mm in the nasal / sinus area. That was followed by 280 hrs. of chemotherapy, plus 25 nasal / sinus radiation treatments.
The Oncologist declared remission as of Feb. 26, 2026.
We’re guardedly optimistic.
The long version:
Diagnosis.
Over a period of a couple years, congestion very slowly developing in my left nasal area became progressively more noticeable. Big red flag popped up Aug. 2025. when congealed mucus expelled from the left nostril exhibited small striations of clotted blood.
There were never any other symptoms.
Sept. 4, 2025, an ENT surgical specialist performed an excision under general anesthesia to remove a suspicious lesion in my left nasal / sinus area. Only thing of note from the surgery was the ventilator tube inserted down my throat left it quite sore & raw feeling. Surgeon was skilled enough that no cosmetic disfigurement resulted.
The mass removed was about the size of a U.S. postage stamp, ~ ¼” thick. Biopsy came back as a quite rare form of T-cell lymphoma.
ENT surgeon has been practicing for 30+ yrs. Said this is the first one he’s ever seen.
Oncologist who’s about the same age & experience said he sees one like this about every 3 ~ 4 years. Maybe. He indicated late stage 1, early stage 2, so it was caught reasonably early. He also uttered the word ”cure” during the first consultation.
So began a series of cranial & full-body diagnostic scans. My arms became pincushions, offering up puncture portals to withdraw precious bodily fluids for diagnostics, and introduction of mysterious ‘stuff’.
I hate needles…
Bone marrow diagnostic extraction:
General anesthetic, poke a hole in the pelvis & remove marrow. Result was negative. Yay!!!
Imaging:
Full-body CAT scan with radioactive dye. A faint hot spot marker in the left neck lymph node was noted. Hmmm...
(Try as I might, I was not able to throw lightning bolts from my fingertips nor did I glow in the dark from the radioactive dye. A little disappointing...).
A few days later, a cranial PET scan with intravenous contrast (faint hot spot indicator in right nasal / sinus area. Again, Hmmm…).
Treatment.
Chemotherapy:
Most of the last quarter of 2025 was consumed by a total of 280 hours of chemotherapy over three, four-day / three-night hospital admissions. Two weeks at home between admissions gave my body time to recover some from the chemo meds.
A 2-port PICC (Peripherally Inserted Central Catheter), akin to a semi-permanent I.V., was inserted in my upper left arm, terminating in a main vein just above my heart. Insertion of the PICC was done the first morning of chemo, once a sterile theater was created. Quite the process.
PICC was left in place for 5 months in my case. It’s a PITA to live with.
There’s a care regimen necessary for a PICC. It can be a direct path for infection into the bloodstream. Must be kept clean, sterile & dry. The sterile dressing is changed weekly in a sterile hospital environment. We bought a roll of 6” wide stretch wrap as waterproof wrap to protect it so I could shower at home.
A PICC can be used to directly draw blood, but it’s main use is in my case was to connect to an infusion pump (lets call it ‘The Poison Pump’ or, TPP for short) for direct injection of chemo meds 24 hrs. a day during each hospital admission.
TPP would run on internal battery for a few hrs., but had to be plugged in to keep it happy for longer.
Bags of saline and chemo meds are hung from the I.V. stand that also holds TPP. The bags had to be replaced every few hours when they were consumed. I was tethered to TPP / I.V. stand by about 6 ft. of tubing between my PICC and TPP. the whole time. It followed me to the can, down the halls, outside to the patio garden. TPP makes a gentle clicking sound every couple of seconds until a bag of chemo stuff is consumed. Then an obnoxious buzzer sounds that only a fresh bag of stuff plus staff intervention will quiet.
Of particular note - Chemo meds are toxic. The first time, and every time thereafter, the oncology nurses (a team of two, every time, every day & night) hooked up bags of chemo meds to TPP, they donned full-body HAZMAT gear. I’m looking askance at this medical theater thinking, “And this stuff is being mainlined into me under pressure...??”
A neighbor asked me, “What is chemo like?”. Well…, it’s ‘like’ a mind-numbing, slow-acting poison, mind fog & liquid fatigue. It kills targeted cancer cells but, also kills certain healthy cells. Hair follicles for one.
My noggin, (among other areas), got bald just in time for cold weather. The Lovely Z1BEBE hand-knitted a cap for me to wear for waking hours. She bought me thin stretch toboggan to sleep in.
Taste, digestion & elimination, stamina, cognition, all take a hit from chemo.
Food tasted like cardboard facsimiles of whatever they were. My beloved whole milk just didn’t go down the same. Sausage pizza was slightly spiced, greasy mush on tasteless slabs of stuff. Strangely, orange jello was pretty good.
I gained 10 lbs. of water weight every admission during the continuous saline infusion. Had to piss very often. Lost it all the following weeks at home & then some. Appetite wasn’t there, so overall I lost 12 lbs. total.
The Lovely Z1BEBE was a fixture during my Dr. visits and, all days, every day, during my admissions for chemo infusion. She has a medical background & speaks Med, so she was go-between & translator between the staff & me.
I couldn’t have had a better advocate. She helped heal me. I practically had to kick her out of my room every afternoon to go home & take care of our dogs.
Radiation:
More accurately, a focused, shaped & controlled, directional high-energy beam from a particle accelerator. Let’s call it the “Daily Death Ray” or, DDR for short.
cancercare.siemens-healthineers.com/prod...nt-delivery/truebeam
Daily every weekday for 5 weeks, a total of 25 DDR visits.
It’s a very large device that would fill most of a semi-trailer.
It was Halloween season when I took that pic. If you zoom in, there’s a Halloween skeleton to be seen on the main body. Dark humor from radiology Techs. The ghostly green thing at the head of the table is the molded mesh mask used to lock my head into the clear plastic cup for exact beam targeting.
The DDR resides in a below-grade, lead-lined room behind a vault-type door that opens into a short tunnel. Bright green lasers crisscross the room, converging at a table that’s part of the overall device. The table can be positioned very precisely in six axes for precise beam targeting.
A plastic mesh mask was molded to my head to lock my head to the table in exactly the same position every time +/- 2mm. Crosshairs are applied to the mask to assist in laser targeting.
A large articulated arm looms over the head of the table. The arm can move in two axes (closer / farther + rotation). It directs, shapes and helps focus the particle beam at the target.
Imagine a fixed point off center within a sphere. That point is the target within my noggin, in the left nostril / sinus area in my case. With multiple axes available for movement, that point can receive continuous, precisely focused, variable energy from a beam that can also be shaped in real time. Surrounding tissue only receives glancing, intermittent exposure.
There is always some spill from the main beam. That’s why the Techs must leave the room. It’s also why the left side of my face slowly became what looked & felt like sunburn.
Once I was on the table with my head secured, the radiation Techs would exit the room & close the vault door. The beam arm would move close to my face, I’d feel the table move slightly a few times, then the arm would quietly begin rotating slowly around my head. Not for the claustrophobic.
The mask felt not unlike a full face helmet. Gentle airflow directed at my face made it possible to envision Ridin’ if I closed my eyes.
The thing must draw serious power. Very audible ‘thunk’ sounds from a floor-to-ceiling wiring cabinet indicated seriously-large circuit closers energizing, and I could see out of the corner of my eye a warning light energize in the exit tunnel. The only other indication I ever had that the beam was energized was truly curious; a slight sensation of a burning odor. This was apparent whether I was inhaling, exhaling or holding my breath. The Radiologist Doc. indicated it was from olfactory nerves being stimulated & fried by the particle beam.
And that’s another thing. Sense of smell took a serious hit. Nasal hair is gone; ENT Doc. sez perhaps never to return. I must be careful not to inhale large birds or small children.
So my nasal & left sinus areas were fried.
A few of the nose bleeds from radiation burn were epic. One of the first during Oct. was while walking across a parking lot. It freaked people out. (Note to self – don’t leave home without tissues.). I made the mistake in Dec. of looking up my nose with a flashlight. Looked like bare holes reamed in raw, red meat. Can’t unsee that.
Discharge on Nov. 26 & subsequent early recovery:
The last DDR visit was Nov. 21. Last of three, four-day-admission chemo sessions ended the night of Nov. 26 & I was discharged. I got to wake up in my own bed for Thanksgiving the next morning. Wasn’t hungry / couldn’t eat, but was happy to be home with The Lovely Z1BEB, our dogs and cat.
Our young Aussie latched onto me like glue the next few weeks, sensing I wasn’t well but, happy that his guy hooman was back.
They tell me I tolerated the 280 hrs. of chemo meds OK. At this writing (early March),, taste, smell, internal plumbing are somewhat normal. Blood chemistry had improved to the point it was deemed time to remove the PICC in early Jan. Really glad that’s gone!
Stamina was / is lacking, like an old windup toy; I run pretty good in the morning, but wind down & stop not long after dark. It’s getting better though. Day-to-day I can’t tell much difference, but, week-to-week I see improvement.
Brain fog is still a thing, but diminishing.
Fast forward to mid Feb.:
A cranial PET scan w / intravenous contrast, then a week later a full-body CAT scan w / radioactive dye (still no GiTD or fingertip lightning bolts…) were done to prep for a powwow with the Oncologist.
Feb. 26:
To paraphrase, the Oncology Doc. sez, “Things look good. You tolerated treatment well. I’m happy. I’m declaring remission. See ya’ in 6 months.”
Z1BEBE & I cried a little – tears of relief & happiness.
If I’m still clean in 5 yrs., Oncologist will declare ‘cured’.
Epilogue:
Early March 2026.
The last quarter of 2025 was rough. We’re glad it’s over with.
There’s peach fuzz on my noggin now, about ¼” long ‘Bout time… A few hair nubs in my nose. They itch.
Life looks different now. Some things thought important, aren’t. Other things have taken on increased value.
A surprising number of people we had considered acquaintances offered heartfelt, real support & solid assistance. Much appreciated! More telling were a very few people we had considered personal ‘friends’, who we thought we knew well, valued & trusted, but then just turned out to be shallow; they ignored, disappeared & went completely radio silent & unresponsive. Disappointing.
A new life milestone has come into being for us. It will henceforth be known as, “Before nose.” and, “After nose.”
The radiation directed at the left side of my head accelerated a left eye cataract I already knew was there. Can see shapes & colors with it, but detail is lost, like looking through a lens smeared with Vaseline. It’s messing with depth perception. Not a good thing for Ridin’.
Cataract surgery is scheduled for Mar. 19.
That green mesh radiation mask will make an awesome Halloween mask. Looking for a set of lightning bolt or atom-themed deelyboppers.
My mainspring has become stronger; I can reliably stay up ‘till 22:00 or so now before I run down. More importantly, I’m mostly back to our typical 1+ mile walks during our daily dog park excursions. Gotta catch up on all that lost Frisbee flight time & happy ball play.
Doc. sez physical stamina is the last thing to recover, but it’s closer to normal now.
Won't go Ridin' until after cataract surgery.
Thanks for reading. We’ll update as new info becomes available.
Good Ridin’
slmjim & Z1BEBE
I was diagnosed with a quite rare form of nasal / sinus T-cell lymphoma early Sept., 2025, resulting in immediate surgical excision of a lesion approx. 20mm x 20mm x 7mm in the nasal / sinus area. That was followed by 280 hrs. of chemotherapy, plus 25 nasal / sinus radiation treatments.
The Oncologist declared remission as of Feb. 26, 2026.
We’re guardedly optimistic.
The long version:
Diagnosis.
Over a period of a couple years, congestion very slowly developing in my left nasal area became progressively more noticeable. Big red flag popped up Aug. 2025. when congealed mucus expelled from the left nostril exhibited small striations of clotted blood.
There were never any other symptoms.
Sept. 4, 2025, an ENT surgical specialist performed an excision under general anesthesia to remove a suspicious lesion in my left nasal / sinus area. Only thing of note from the surgery was the ventilator tube inserted down my throat left it quite sore & raw feeling. Surgeon was skilled enough that no cosmetic disfigurement resulted.
The mass removed was about the size of a U.S. postage stamp, ~ ¼” thick. Biopsy came back as a quite rare form of T-cell lymphoma.
ENT surgeon has been practicing for 30+ yrs. Said this is the first one he’s ever seen.
Oncologist who’s about the same age & experience said he sees one like this about every 3 ~ 4 years. Maybe. He indicated late stage 1, early stage 2, so it was caught reasonably early. He also uttered the word ”cure” during the first consultation.
So began a series of cranial & full-body diagnostic scans. My arms became pincushions, offering up puncture portals to withdraw precious bodily fluids for diagnostics, and introduction of mysterious ‘stuff’.
I hate needles…
Bone marrow diagnostic extraction:
General anesthetic, poke a hole in the pelvis & remove marrow. Result was negative. Yay!!!
Imaging:
Full-body CAT scan with radioactive dye. A faint hot spot marker in the left neck lymph node was noted. Hmmm...
(Try as I might, I was not able to throw lightning bolts from my fingertips nor did I glow in the dark from the radioactive dye. A little disappointing...).
A few days later, a cranial PET scan with intravenous contrast (faint hot spot indicator in right nasal / sinus area. Again, Hmmm…).
Treatment.
Chemotherapy:
Most of the last quarter of 2025 was consumed by a total of 280 hours of chemotherapy over three, four-day / three-night hospital admissions. Two weeks at home between admissions gave my body time to recover some from the chemo meds.
A 2-port PICC (Peripherally Inserted Central Catheter), akin to a semi-permanent I.V., was inserted in my upper left arm, terminating in a main vein just above my heart. Insertion of the PICC was done the first morning of chemo, once a sterile theater was created. Quite the process.
PICC was left in place for 5 months in my case. It’s a PITA to live with.
There’s a care regimen necessary for a PICC. It can be a direct path for infection into the bloodstream. Must be kept clean, sterile & dry. The sterile dressing is changed weekly in a sterile hospital environment. We bought a roll of 6” wide stretch wrap as waterproof wrap to protect it so I could shower at home.
A PICC can be used to directly draw blood, but it’s main use is in my case was to connect to an infusion pump (lets call it ‘The Poison Pump’ or, TPP for short) for direct injection of chemo meds 24 hrs. a day during each hospital admission.
TPP would run on internal battery for a few hrs., but had to be plugged in to keep it happy for longer.
Bags of saline and chemo meds are hung from the I.V. stand that also holds TPP. The bags had to be replaced every few hours when they were consumed. I was tethered to TPP / I.V. stand by about 6 ft. of tubing between my PICC and TPP. the whole time. It followed me to the can, down the halls, outside to the patio garden. TPP makes a gentle clicking sound every couple of seconds until a bag of chemo stuff is consumed. Then an obnoxious buzzer sounds that only a fresh bag of stuff plus staff intervention will quiet.
Of particular note - Chemo meds are toxic. The first time, and every time thereafter, the oncology nurses (a team of two, every time, every day & night) hooked up bags of chemo meds to TPP, they donned full-body HAZMAT gear. I’m looking askance at this medical theater thinking, “And this stuff is being mainlined into me under pressure...??”
A neighbor asked me, “What is chemo like?”. Well…, it’s ‘like’ a mind-numbing, slow-acting poison, mind fog & liquid fatigue. It kills targeted cancer cells but, also kills certain healthy cells. Hair follicles for one.
My noggin, (among other areas), got bald just in time for cold weather. The Lovely Z1BEBE hand-knitted a cap for me to wear for waking hours. She bought me thin stretch toboggan to sleep in.
Taste, digestion & elimination, stamina, cognition, all take a hit from chemo.
Food tasted like cardboard facsimiles of whatever they were. My beloved whole milk just didn’t go down the same. Sausage pizza was slightly spiced, greasy mush on tasteless slabs of stuff. Strangely, orange jello was pretty good.
I gained 10 lbs. of water weight every admission during the continuous saline infusion. Had to piss very often. Lost it all the following weeks at home & then some. Appetite wasn’t there, so overall I lost 12 lbs. total.
The Lovely Z1BEBE was a fixture during my Dr. visits and, all days, every day, during my admissions for chemo infusion. She has a medical background & speaks Med, so she was go-between & translator between the staff & me.
I couldn’t have had a better advocate. She helped heal me. I practically had to kick her out of my room every afternoon to go home & take care of our dogs.
Radiation:
More accurately, a focused, shaped & controlled, directional high-energy beam from a particle accelerator. Let’s call it the “Daily Death Ray” or, DDR for short.
cancercare.siemens-healthineers.com/prod...nt-delivery/truebeam
Daily every weekday for 5 weeks, a total of 25 DDR visits.
It’s a very large device that would fill most of a semi-trailer.
It was Halloween season when I took that pic. If you zoom in, there’s a Halloween skeleton to be seen on the main body. Dark humor from radiology Techs. The ghostly green thing at the head of the table is the molded mesh mask used to lock my head into the clear plastic cup for exact beam targeting.
The DDR resides in a below-grade, lead-lined room behind a vault-type door that opens into a short tunnel. Bright green lasers crisscross the room, converging at a table that’s part of the overall device. The table can be positioned very precisely in six axes for precise beam targeting.
A plastic mesh mask was molded to my head to lock my head to the table in exactly the same position every time +/- 2mm. Crosshairs are applied to the mask to assist in laser targeting.
A large articulated arm looms over the head of the table. The arm can move in two axes (closer / farther + rotation). It directs, shapes and helps focus the particle beam at the target.
Imagine a fixed point off center within a sphere. That point is the target within my noggin, in the left nostril / sinus area in my case. With multiple axes available for movement, that point can receive continuous, precisely focused, variable energy from a beam that can also be shaped in real time. Surrounding tissue only receives glancing, intermittent exposure.
There is always some spill from the main beam. That’s why the Techs must leave the room. It’s also why the left side of my face slowly became what looked & felt like sunburn.
Once I was on the table with my head secured, the radiation Techs would exit the room & close the vault door. The beam arm would move close to my face, I’d feel the table move slightly a few times, then the arm would quietly begin rotating slowly around my head. Not for the claustrophobic.
The mask felt not unlike a full face helmet. Gentle airflow directed at my face made it possible to envision Ridin’ if I closed my eyes.
The thing must draw serious power. Very audible ‘thunk’ sounds from a floor-to-ceiling wiring cabinet indicated seriously-large circuit closers energizing, and I could see out of the corner of my eye a warning light energize in the exit tunnel. The only other indication I ever had that the beam was energized was truly curious; a slight sensation of a burning odor. This was apparent whether I was inhaling, exhaling or holding my breath. The Radiologist Doc. indicated it was from olfactory nerves being stimulated & fried by the particle beam.
And that’s another thing. Sense of smell took a serious hit. Nasal hair is gone; ENT Doc. sez perhaps never to return. I must be careful not to inhale large birds or small children.
So my nasal & left sinus areas were fried.
A few of the nose bleeds from radiation burn were epic. One of the first during Oct. was while walking across a parking lot. It freaked people out. (Note to self – don’t leave home without tissues.). I made the mistake in Dec. of looking up my nose with a flashlight. Looked like bare holes reamed in raw, red meat. Can’t unsee that.
Discharge on Nov. 26 & subsequent early recovery:
The last DDR visit was Nov. 21. Last of three, four-day-admission chemo sessions ended the night of Nov. 26 & I was discharged. I got to wake up in my own bed for Thanksgiving the next morning. Wasn’t hungry / couldn’t eat, but was happy to be home with The Lovely Z1BEB, our dogs and cat.
Our young Aussie latched onto me like glue the next few weeks, sensing I wasn’t well but, happy that his guy hooman was back.
They tell me I tolerated the 280 hrs. of chemo meds OK. At this writing (early March),, taste, smell, internal plumbing are somewhat normal. Blood chemistry had improved to the point it was deemed time to remove the PICC in early Jan. Really glad that’s gone!
Stamina was / is lacking, like an old windup toy; I run pretty good in the morning, but wind down & stop not long after dark. It’s getting better though. Day-to-day I can’t tell much difference, but, week-to-week I see improvement.
Brain fog is still a thing, but diminishing.
Fast forward to mid Feb.:
A cranial PET scan w / intravenous contrast, then a week later a full-body CAT scan w / radioactive dye (still no GiTD or fingertip lightning bolts…) were done to prep for a powwow with the Oncologist.
Feb. 26:
To paraphrase, the Oncology Doc. sez, “Things look good. You tolerated treatment well. I’m happy. I’m declaring remission. See ya’ in 6 months.”
Z1BEBE & I cried a little – tears of relief & happiness.
If I’m still clean in 5 yrs., Oncologist will declare ‘cured’.
Epilogue:
Early March 2026.
The last quarter of 2025 was rough. We’re glad it’s over with.
There’s peach fuzz on my noggin now, about ¼” long ‘Bout time… A few hair nubs in my nose. They itch.
Life looks different now. Some things thought important, aren’t. Other things have taken on increased value.
A surprising number of people we had considered acquaintances offered heartfelt, real support & solid assistance. Much appreciated! More telling were a very few people we had considered personal ‘friends’, who we thought we knew well, valued & trusted, but then just turned out to be shallow; they ignored, disappeared & went completely radio silent & unresponsive. Disappointing.
A new life milestone has come into being for us. It will henceforth be known as, “Before nose.” and, “After nose.”
The radiation directed at the left side of my head accelerated a left eye cataract I already knew was there. Can see shapes & colors with it, but detail is lost, like looking through a lens smeared with Vaseline. It’s messing with depth perception. Not a good thing for Ridin’.
Cataract surgery is scheduled for Mar. 19.
That green mesh radiation mask will make an awesome Halloween mask. Looking for a set of lightning bolt or atom-themed deelyboppers.
My mainspring has become stronger; I can reliably stay up ‘till 22:00 or so now before I run down. More importantly, I’m mostly back to our typical 1+ mile walks during our daily dog park excursions. Gotta catch up on all that lost Frisbee flight time & happy ball play.
Doc. sez physical stamina is the last thing to recover, but it’s closer to normal now.
Won't go Ridin' until after cataract surgery.
Thanks for reading. We’ll update as new info becomes available.
Good Ridin’
slmjim & Z1BEBE
A biker looks at your engine and chrome.
A Rider looks at your odometer and tags.
1973 ('72 builds) Z1 x2
1974 Z1-A x2
1975 Z1-B x2
1993 CB 750 Nighthawk x2
2009 ST1300A
www.kawasaki-z-classik.com
A Forum tightly focused on all things Z1 and Z2.
A Rider looks at your odometer and tags.
1973 ('72 builds) Z1 x2
1974 Z1-A x2
1975 Z1-B x2
1993 CB 750 Nighthawk x2
2009 ST1300A
www.kawasaki-z-classik.com
A Forum tightly focused on all things Z1 and Z2.
Last edit: 11 Mar 2026 09:05 by slmjim+Z1BEBE. Reason: Formatting lost in copy / paste.
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Re: slmjim - T-cell lymphoma - we're guardedly optimistic
11 Mar 2026 09:42
Hi Slim Jim, I wish you all the best and a full recovery! Be strong and believe on yourself!!!
(I know more about this whole mess than I ever wanted to know: I was diagnosed with tongue base cancer in '22, long story short; 7 weeks of daily radiation therapy, plus port and chemotherapy... 25 kilos weight loss, months of swallowing razor blades... blah blah blah, we all know that kind of shit... then a relatively good recovery, but tons of long-term effects from the 70-gray radiation, such as osteonecrosis of the jaw, 30-40 cramps a day in my neck muscles...) I've got my weight back, I'm still training with weights and doing sports, I can eat almost anything I like, and the best part for me: I can still ride my motorcycle
(I know more about this whole mess than I ever wanted to know: I was diagnosed with tongue base cancer in '22, long story short; 7 weeks of daily radiation therapy, plus port and chemotherapy... 25 kilos weight loss, months of swallowing razor blades... blah blah blah, we all know that kind of shit... then a relatively good recovery, but tons of long-term effects from the 70-gray radiation, such as osteonecrosis of the jaw, 30-40 cramps a day in my neck muscles...) I've got my weight back, I'm still training with weights and doing sports, I can eat almost anything I like, and the best part for me: I can still ride my motorcycle
Greetings, Joe
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