Tag Archives: Lymphoma

Cancer, Health, Home/Life, Our Shetland Sheepdogs

Thoughts on my Health and the Year 2023

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Morning Walkies with Toshiro and Sachiko

Morning Walkies with Toshiro and Sachiko

Morning Walkies with Toshiro and Sachiko

After a week-long stay at the hospital with a few days of septic delirium, a week of IV antibiotics, and a month of Cipro, this is a loud-and-pronounced call that I need to focus on my health and getting control over my leg lymphedema as best I can.

Despite my best efforts for walking 60-90mi each month with the pups, doing frequent showers and moisturizing, I still seem to be getting cellulitis and sepsis several times each year. My last echocardiogram shows that it’s taking a toll on my heart health as I repeatedly get pumped full of IV fluids and antibiotics.

So, my goal now is to be thorough and persistent with my physical therapy at Kaiser and Virginia Hospital Center, to do more frequent/longer walks and cycling, and to hopefully get my leg into a healthier long-term state.

Or, at the very least, to be able to enjoy long walks, hikes, and cycling again?

Today was an exhaustive visit, but one of the best visits I’ve had with Kaiser about my short-term health, long-term health, and long-term treatment:

  • Yes, I do have a slightly enlarged heart and decreased ejection fraction, but it’s due to pseudomonas and sepsis as a blood infection. Seeing increased heart size and changes to ejection fraction are common. They’re scheduling me for a transesophageal echocardiogram in 2-3 weeks to verify my recovery once the Cipro is over. They’ll also schedule me for a full panel of bloodwork to verify my bloodwork, recovery, and level of immunity/immunocompromised.
  • Yes, I do have Stage 3 Lymphedema of my left leg. It’s pronounced. They want to photograph it monthly, document it, and do more aggressive physical therapy to see if we can’t see some recovery, improvement in mobility, decreased neuropathy. I’m being referred to Virginia Hospital Center (VHC) for my lymphedema care.
  • They’re documenting that I have a severe reaction to a flea bite, not uncommon for my lymphoma, lymphedema, decreased immune response. Pseudomonas itself was likely acquired during frequent clinical visits. MRSA and Pseudomonas are concerns given my health and history.
  • They recommended a Bifenthrin Insecticide fogger for front yard and back to reduce mosquitoes and insects, fog yard every 2-3 weeks. Safe for both me and our dogs. They recommended spraying my pants and shirts with Permethrin and/or DEET, to wear long pants and shirts for all walks outdoor exposure due to severe reaction to flea bite.
Cancer, Health

PET/CT SCAN RESULTS (Thu 22-Sep-2022)

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PET/CT SCANNER (Stock Art)

1) Congratulations! You remain in remission from Mantle Cell Lymphoma.

There is no evidence of recurrent hypermetabolic or structural evidence of high grade lymphoma. Specifically, no abnormal uptake in normal-sized lymph nodes, pathologic lymphadenopathy by size criteria, hypermetabolic focal splenic lesions, splenic uptake above background or suspicious FDG avid osseous lesions.

2) Congratulations, you have splenomegaly!

Current splenic measurements are 16 x 8.5 cm in craniocaudal by transverse dimensions, similar to prior.

3) Congratulations, you have a kidney stone in your left kidney!

Possible layering calyceal stones in the left greater than right kidneys. No hydronephrosis.

4) Congratulations, you have age-appropriate degenerative changes in the spine.

Cancer, Health, Health Barometer, Mantle Cell Lymphoma (MCL)

“Not with a bang but a whimper” (health update)

❝ Hey you! I hadn’t seen a health update in a while, and I really wanted to know how you were doing. ❞

It’s been a while since I last posted an update about my health or my ongoing adventures with cancer, remission, and lymphedema.  Between our societal exhaustion of the pandemic and my own personal fatigue of dealing with the after-effects of cancer, chemo, lymphoma, and lymphedema, blogging about my health wasn’t as high a priority for me.

I was surprised and very thankful to hear from a beloved and old friend yesterday. It was really nice catching up with her, and she asked about my latest health.  She reminded me it’s been a while since my last update, so it prompted me to post this update.  Rather than retype much of what I told her, I thought I’d copy much of my summary here.

I really can’t understate how surprised and thankful I was to hear from her.  She’s someone whose opinions, observations, and life experiences I greatly respect and admire.  It’s fascinating how our lives have paralleled each other.

• • •

While being told “you have cancer, it’s Stage 4, we need you to go to the hospital for IV infusion” is pretty dramatic and a singular event, recovery isn’t so dramatic or so singular.

I’m on my third remission, it’s the longest so far, but the effects of 3 years of chemo and an imperfect bone marrow transplant continue to linger. The lymphedema of my left leg is such that at any given time, my left leg is 2-3x the size and weight of my right leg. It means I get cellulitis far more often (2-3x each year), and I get hospitalized each time for sepsis accompanying the cellulitis.

In these past few weeks as I try to walk more, hike more, and get out more, it means I walk funny as I try to put more weight, stress, and maneuverability on my right leg. It also means that twisted my leg and loosened my ligaments in my right knee. I had two x-rays of my knee, thankful it doesn’t need surgery, but means I need to wear a soft brace while I try to exercise more to strengthen the muscles in my legs.

I ought to write it all down and post it, but it’s tedious and ongoing (feels never-ending sometimes).

I wish I could have gone to Defcon 30. I had several friends who went, told me about the exciting time they had, and sent pictures. I still would like to go to Burning Man sometime. I figure I’ll have an easier time at Burning Man than at Defcon since it’s easier to maintain personal space and take various hygiene precautions/wear.

Still somewhat immunocompromised, so I work from home full-time, I try to limit my socialization, and it’s pretty funny (not really) how quickly sick I get from time spent around others who think they aren’t sick, or “it’s just the sniffles, nothing really, I’m not contagious” and then I end up in the hospital for a couple of days for IV antibiotics (which is a true story, exactly what happened after attending the wake and funeral of Vicky’s Dad)

Humor, sometimes dark humor, certainly helps with coping. Especially around others, who either have misconceptions about what cancer is, what cancer is like, or how they see it/handle it in others.

People don’t alarm me any more with their reactions. I don’t answer the trolls anymore, but will answer those genuinely curious or dealing with similar issues. My first few outings to the movies or to the restaurant were frustrating or exhausting.

And yeah… the pandemic has been something else, especially with how some people deal with it… or don’t. Since it’ll definitely knock me down, out, or kill me, I avoid others who I suspect have covid.

Cancer, Mantle Cell Lymphoma (MCL)

Joys of Growing Older (lymphedema and bad knee)

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Lymphedema (secondary to Lymphoma) in one leg, bad knee in the other.

Long ago and far away (during my senior year of high school), I was climbing a 20-foot ladder to retrieve a pallet of paint from three-story warehouse.  While I was carrying gallons of paint down the ladder, I got my foot caught in a rung and twisted my right knee.  Despite fighting the claim, my employee recognized their fault and my injury, and I had my leg braced for part of the summer.  I didn’t tear but I did loosen the post cruciate ligament (PCL) of my right knee.

A couple years later, I seriously wondered if my right knee was going to keep me from passing Basic Military Training (BMT) at Lackland AFB in 1992.   Thankfully, the requirements for “running” a mile was a 12min/mile.  At 12 minutes, you could effectively JOG a mile and not have to RUN it.  So I did.  At just over 10 minutes, I took my mile at a very comfortable pace and still passed BMT.  My right knee was in considerable pain that week between daily exercises, hikes around Lackland in full battle dress uniforms (BDUs), and trying to haul my sorry ass a mile in under 12 minutes.

Fast forward 30 years, I have lymphedema in my left leg (secondary to Mantle Cell Lymphoma) and now I’m having sharp “grinding pains” in my right knee.  I’ve been woken up multiple times in sharp pain as it feels like bone-on-bone grinding in my right knee.  I’ll need to get my leg x-rayed next week.

It’s always something… isn’t it?

Cancer

Ongoing Joys and Checkups of Lymphedema

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Video Visit with Dr. Yoho (Kaiser-Permanente, Tysons, VA)

Dr. Yoho emphasizing that I need to exercise my lymphatic leg more, that I need to elevate it more, and that I really need to wear compression stocking as much as possible.

I’ve been neglecting and tolerating my swollen leg, especially with the high heat of mid-summer and the pain of taking long walks.

I ought to get more compression stockings, clean my leg and check for any cuts or changes, wear compression stockings and exercise it every day, and wash the compression stockings (wear clean stocking) each day.

Cancer, Health

Latest PET/CT with Contrast (3/4/22) and Follow-Up

Nurse preparing patient for CT scan test in hospital room

PET/CT with CONTRAST, taken 1/6/2021

IMPRESSION:
1. No evidence of FDG avid adenopathy.
2. Decreased focal FDG uptake at the junction of the descending and sigmoid colons when compared to prior. Of note colonoscopy results from 10/23/2020 demonstrated fragments of granulation tissue with ulcer, positive for CMV.
3. Improving right lower lobe pneumonia.

4. Splenomegaly.

PET/CT with CONTRAST, taken 3/4/2022

IMPRESSION:
1. No suspicious FDG avid lymphadenopathy. Unchanged splenomegaly with uptake below that of background liver. Deauville score of 1.
2. New focal radiotracer accumulation in the sigmoid colon with possible focal wall thickening. Finding is indeterminate in etiology, and consideration of colonoscopy should be obtained as clinically warranted. Of note, patient had a prior colonoscopy which demonstrated CMV colitis.

3. Increase of left lower extremity lymphedema.

FOLLOW-UP

1. Colonoscopy.
2. Physical Therapy for left lower extremity lymphedema.
Cancer, Family, Home/Life, Johns Hopkins - Sidney Kimmel Cancer Center, Mantle Cell Lymphoma (MCL), Our Shetland Sheepdogs

Together as Family, with Cautious Joy (March 2020)

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Together as Family, with Cautious Joy (March 2020)

NOTE:  We’re together as a family as we’re “Celebrating with Cautious Joy” after my PET/CT scan this week showed no active cancerous tumors (mantle cell lymphoma).

Hopefully, this remission will last longer than my previous two. Unfortunately, with my aggressive cancer, remissions for me ended in relapse after two to three months. We’re meeting with Kaiser-Permanente and Johns Hopkins to discuss our next steps…

I was diagnosed with Stage 4 Mantle Cell Lymphoma in January of 2018.  It is now March of 2020.  This will now be my third remission from Mantle Cell Lymphoma since this arduous journey began.  With both of my previous remissions (after Maxi-dose R-CHOP/”Nordic Protocol” in early 2018 and after my Bone Marrow Transplant in June of 2019), my cancer returned between two to three months later.  With both relapses, our hopes and joys were crushed as I immediately began IV chemo, radiation, or was hospitalized with each.

It’s hard to be overjoyed or celebrate at the news of a negative PET/CT scan when you’ve had two relapses in two years in just over two months’ time each.  Vicky and I are “celebrating with cautious joy” but continuing to take it day-by-day, week-by-week, and month-by-month.  For each day, week, month, and [hopefully] year I remain in remission, we’ll give thanks to family, friends, our medical teams at Kaiser-Permanente, Johns Hopkins, the National Institutes of Health (NIH), and the Seattle Cancer Care Alliance (SCCA), and… of course to God for hearing our prayers and those of our family & friends!

I am still immunosuppressed/immunocompromised, but not currently neutropenic.  I will continue getting my bloodwork done weekly, and using my ANC (Absolute Neutrophil Count), RBC (Red Blood Cell count), WBC (White Blood Cell count), Hematocrit (oxygen-carrying capacity of blood), and Platelets (clotting factor) to determine how much I can get out of the house and how much social interaction I can have.  With the current Coronavirus epidemic spanning the world, I am severely at-risk and it would either hospitalize me or kill me.  I’m continuing to wear disposable N99 filtration masks or re-usable cloth N99 filtration masks (with disposable N99 paper filter inserts) to reduce my risk when outside of the house, in crowded places.  I also carry Purell, Lysol Spray, and gloves to either avoid contact or immediately sterilize my hands after contact.

At this point, our next steps are for me to have a bone marrow biopsy with Kaiser-Permanente to verify what the PET/CT scan reported.  I should have no indication of metastasis.  We’re also meeting with Johns Hopkins for my long-overdue six-month bone marrow transplant review, where I’ll undergo additional blood tests, they’ll be checking me for Graft vs. Host Disease (GvHD), and we’ll discuss why my blood products remain so low when it’s been nine (9) months since my bone marrow transplant.

In our last discussion with the Seattle Cancer Care Alliance (SCCA), their theories were:

  1. My bone marrow transplant “barely took”, and the reason why my ANC, RBC, WBC, Hematocrit, Platelets all remain low is because they are being produced by my bone marrow in small, finite amounts.  Blood cells of each type all have a short/set lifetime, die, and get replaced.  My low numbers and cyclical ups/downs are representative of a weakly-transplanted bone marrow graft and the natural lifecycles of blood products.
  2. My bone marrow transplant “is in better shape than ‘barely took'” but “there is something eating my blood products nearly as quick as my bone marrow can produce it.” SCCA recommended that both theories be investigated and researched further by Kaiser-Permanente in coordination with Johns Hopkins and NIH once we returned from Seattle in January 2020.

With the diagnosis and treatment of my radiation-induced colitis, it is not likely that colitis is “eating my blood products” as we may have first suspected.  In the past couple of months, my ANC has slowly-but-steadily gotten better with it rising over 1.0 (the threshold for IV chemo using Revlimid) just a few weeks ago.

So this is not exactly a cause for revelry and celebration just yet…  We’ll continue to meet with Kaiser-Permanente and Johns Hopkins over the next two weeks, with possible discussions or differential analysis by the National Institutes of Health (NIH) on what it means that my blood product numbers have been so low, and how to prepare or continue remission in light of a history of aggressive Mantle Cell Lymphoma that had two prior relapses within months.  In the past, both Johns Hopkins and NIH recommended three years of Rituxan therapy as a means of “maintenance chemotherapy” to reduce the likelihood of recurrence.  We’re going to ask why this isn’t being followed, recommended, or overlooked this time.