Tag Archives: lymphedema

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, 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, Health

Physical Therapy for Lymphedema of the Leg

Mini Rebounder for Lymph Drainage

Mini Trampolines are Good for the Lymphatic System

“Water Therapy” (walking in a pool with natural water pressure and resistance against lymphedema) and “Urban Rebounding” (mini-trampoline with stabilizer bar and exercise for lymphatic drainage) were the two biggest Physical Therapy exercises discussed today.

Diane Sharr, OT, and Anne Smith, OT, discussed my switching to bariatric and lymphedema clothing to accommodate my increase in lymphedema size. They also strongly recommended I switch laundry detergents to baby soap detergent to decrease harshness and hygienics of the clothing irritating my leg, will also decrease recurrence of cellulitis.

Today was a GREAT visit and discussion. Looking forward to improved physical therapy, monitoring, and care of my leg lymphedema.

Discussed today:

CLOTHING:

EXERCISE:

LAUNDRY:

Cancer

Lest I Forget How 2022 Began

ICU Stay at Reston Hospital (Reston, VA)

ICU Stay at Reston Hospital (Reston, VA)

LEST I FORGET HOW 2022 BEGAN

Ambulance ride, hospitalization, and ICU from December 28th, 2021 until January 3rd, 2022. Admitted for cellulitis of left leg, septic shock (pseudomonas aeruginosa bacterial infection), high heart rate and low blood pressure, sinus-tachycardia.

1) Be thankful every day for good health and being at home surrounded by loved ones rather than hospitalized surrounded by medical.

2) Try to avoid further health issues in 2022.

Cancer

Two Hospital Stays in a Month’s Time

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In the span of a month (from mid-January to mid-February of 2021), I was hospitalized twice at Reston Hospital Center, Progressive Care Unit, in Reston, VA…

…with both stays, I quickly developed cellulitis of my left leg followed by a high fever and sepsis.  Since my lymphedema has become so large, I’m told I can expect frequent cellulitis due to stagnation of blood and lymphatic fluid in my left leg.  I need to exercise it as much as I’m able, bathe and moisturize it to prevent cracking, bleeding, and infection, and expect more frequent bouts of cellulitis.  Once my current regimen of antibiotics is over from my latest hospital stay, I’m hoping to start taking Lasix to reduce my lymph retention.