Post-Cancer Comeback

You have a lot going on and have been through a lot, and you've written a lot!

If you don't mind, a few questions with some thoughts.

Where do you live? You might be near an exercise-oncology researcher who could assist you, if not be interested in you as a subject. If you have hills nearby, they are good for strength, even just walking. With gyms closed they may help you regain your strength.

What chemotherapy drugs did you receive (guessing one was a platinum)? Cisplatin can cause hearing/balance problems. There are also some cardiotoxic chemotherapy drugs (anthracyclines e.g. doxorubicin) that could have affected you.

Have you had a post-treatment stress test with EKG (Related to previous question)?

Have you been to counseling? You've written a lot, yet most people won't understand what you've been through. Cancer patients can get PTSD too. It might be worth trying, I found it worthwhile.

Have you seen a neurologist about the nerve and phantom pain? You might get better results with a neurologist, they tend to dose nerve pain differently than oncologists. It made a big difference for me.

I haven't read all the replies to you, but walk/jog was a successful way back for me. Be patient and consistent, and yeah, you probably should lower your expectations. As you've said, the treatments did a number on your body. Get EKG tested; modest stress/rest. Repeat.

Regarding oncology follow-up tests, I recently did an out-patient CT scan, which might be COVID safer than a hospital.

All the best!

(Didn't read the full thread prior to this, so sorry if I'm repeating something. Here's my anecdata:)

Stage II diffuse large b-cell lymphoma, a form of non-Hodgkin's lymphoma, in 2007, age 25. Large tumor inside my spinal column; laminectomy over 4 vertebrae (T8-11) to get it out.

Recovery from the laminectomy ultimately took more time than the chemotherapy (although the chemo wasn't fun either, obviously). In round numbers, from diagnosis to running again was 1 year. 1 year more - so 2 years total post-diagnosis - to completing my first marathon post-diagnosis. 3:30 marathoner pre-cancer, 3:25 marathoner post-cancer, so, suck it, DLBCL.

(Postscript: later dropped that to a 3:05 marathon, still dreaming of sub-3 before I hit 40.)

Things that helped: all the things that sound incredibly trite even to write, but are also true, like appreciating what I had and was still capable of. Then, focusing on the process, both rehab (I was in physical therapy for 2 years post-surgery) and training per se.

Things that didn't help: trying to train between chemo appointments; comparing myself to my pre-laminectomy splits; listening to people who said that I could never come back.

Good luck. I mean it sincerely.

... I guess I should have said more than just "good luck" - all my best wishes. I'll be rooting for you. Come back with further updates, please.

WOC and 907 some good points to consider, from people who have been there.

Ghost of Igloi - not to make this thread a follicular-origin lymphoma reunion (but, seriously, I would have loved to have found this thread at any point during my diagnosis or the two years of recovery; yes, I know it didn't exist then), but looks like I had precisely the same R-CHOP-21 as you, though I was able to avoid the radiation follow-up.

And I'm truly grateful for my good health since then, and proud of what I've achieved athletics-wise, blah blah blah I'm so great - but I was 25 at the time of diagnosis, and still am not yet 40. Not approaching 70. And not to be patronizing, but I train with a bunch of folks your age, and I think we all know what happens to recovery, from any form of stress, with age. I have a great deal of respect for you getting back into running and training in your late 60s. Well done.

(Also, if anyone ever comes across this thread, now or years from now, and has more questions about my experience, please feel free to contact me directly: gavin_kentch (at) yahoo dot com. Thankfully, I don't need to identify as A Cancer Survivor very much at all in my daily life... but if someone sees this and it would help to reach out, please do so. As I said, it would have meant the world to me to see a realistic discussion of running training post-cancer when I was going through it myself.)

And, again, Sub-8 Mile, I'm pulling for you.

907,

Thank you. WOC is another in our club. The treatment is tough. The Monday after my first R-Chop treatment I thought this isn’t that bad. I parked a mile from the office just to get in some exercise. The first work day after the second round I went in to the office, barely made it, and crapped all over toilet. Exploded all over the bathroom. I went commando the rest of the day, but boy did it take time to clean up. After that I had bathrooms mapped out for my walk in. There were a couple of days it took me thirty minutes to walk back to my car. When I was fresh in the morning, not so bad. My respiration was severely compromised. I also had a lot of hip bone pain as my blood cell production was stressed.

My disease Follicular Lymphoma 3a, though aggressive, is probably a somewhat easier nut to crack. That said, I have my two year CT scan next month, and as you know that is a significant hurdle to cross. If clean I get my chemo port removed, and move on to annual monitoring. Fortunately for us we were born in an age of much progress for blood cancers. Ten years ago FL patients had a life expectancies of seven years, and a large number less than two years. Today, 88% are expected to live a normal life, and that number keeps climbing. At the time of your diagnosis probably more progress for DLBCL than that!

Two months prior to my diagnosis I ran a 22:30 5k, in March I did a 24:40 tempo on the track. I was planning to race Carlsbad 5k, but the Covid ended that. So back at the drawing board. I run three times a week, swim twice, walk once, and one day off. I was spin biking, but the combination with chemo caused prostatitis. Then radiated in the same area. Never had a high PSA, spiked to 27; now 0.62.

Glad you are doing well, and thanks for the shout out.

Igy

Ghost of Igloi wrote:

One of the ideas I use is a concept that came from the evil genius Salazar. That is “equivalent miles” which if you notice my posts, I call “Igy miles.” What you are doing here is coming up with a metric to quantify and track your cross training volume. For example, 30:00 on a spin bike, or 1,000 yards swimming is 3 miles. It does not matter if this is an accurate measure, it is just a way you can measure, and adjust your training loads. Remember you have essentially three main variables = 1) number of training sessions; 2) volume of training (a session and block of sessions), 3) intensity of session (or quality days in a period). Manipulating these variables will help you zero in on a structure. Good reference books are Daniels’ Running Formula and Freeman’s Peak When It Counts.

Brilliant. Thank you.

Huh. I didn't know about this. I'll look into it, thanks.

Laying off the hills for now ... but what a great idea - maybe I could WALK up a hill. Long vigorous walking repeats. I should have thought of that!

Yes, I started with walk/jog 2-3 months ago. Thanks for the reminder - I may need to get back to it. Gonna try another approach for a few weeks and see how that goes.

Right, tons of platinum in at least a couple of different chemo's. The hearing & balance problems are directly related, yes. Also the nerve damage. I did see a neurologist, tried treatment, and my case is what it is. The good news is that it appears to be very slowly healing over time.

No, they have been like "Wow! This guy is alive, walking around, and not much wrong with him! Amazing!! In the implausible event of survival, he should be fully disabled! Look at him go!!!"

I haven't. For some reason I feel guilty about the idea of going tbh. Experienced medical professionals have all been shocked and amazed about my survival during cancer and my progress with recovery. Many other patients have it far, far worse. My survival and recovery thus far, I am told, has no precedent. How can I go whine about my problems to a group of struggling survivors, or complain by myself in a room with a therapist?

My feet hurt and my ears ring? I'm a little dizzy and don't always think straight? Big whoop, right?

WOC, you mentioned PTSD. OK, yeah, that may be a factor here. I'll consider talking to someone, thanks for that. I appreciate it.

For now, I'm going to get out on the track. I am going to train. I am going to ... well, we'll see what I'm going to do.

Awesome. Thanks for sharing that. 3:30 pre-cancer, recovering, and getting down to 3:05 after having 4 vertebrae removed! I hope you go ahead and break 3:00.

Sub-8 Mile wrote:

Also the nerve damage. I did see a neurologist, tried treatment, and my case is what it is. The good news is that it appears to be very slowly healing over time.

Sounds like polyneuropathy. I got the msg from my oncologist that it would disappear over a number of years. 3 1/2 years later I can observe its much better, but far from all gone. Never feels like someone put sharp knives in my shoes any more, and I can carry grocery bags.

WOC wrote:

There are also some cardiotoxic chemotherapy drugs (anthracyclines e.g. doxorubicin) that could have affected you.

That brought back some wonderful memories...

Semiler wrote:

Sub-8 Mile wrote:

Also the nerve damage. I did see a neurologist, tried treatment, and my case is what it is. The good news is that it appears to be very slowly healing over time.

Sounds like polyneuropathy. I got the msg from my oncologist that it would disappear over a number of years. 3 1/2 years later I can observe its much better, but far from all gone. Never feels like someone put sharp knives in my shoes any more, and I can carry grocery bags.

Mine has improved a good bit from 3 years ago; I couldn't walk much without it being excruciating. Now it's there but I mostly ignore it. Running flares it up.

Sub-8 Mile wrote:

Awesome. Thanks for sharing that. 3:30 pre-cancer, recovering, and getting down to 3:05 after having 4 vertebrae removed! I hope you go ahead and break 3:00.

I don't know, I feel like the performance-enhancing benefits of the weight loss from (parts of) four vertebrae should not be discounted. :-)

Seriously, though - many thanks. I appreciate it, from anyone, particularly from someone in very much the same boat. I did it (I mean, recover and improve, if not sub-3 marathon) (yet); you can, too.

I was thinking about this while driving to practice last night. It's true what I said previously, that I seldom identify as A Cancer Survivor day-to-day - I'm not going to cast aspersions on someone who does, it just doesn't feel like that integral a part of who I am these days. But. If I ever need motivation to get out the door, I can just ask myself, "did I go through two years of rehab, just to be able to run again, to skip this workout?" And, reader, the answer is always "no."

Ghost of Igloi wrote:

... Glad you are doing well, and thanks for the shout out.

Igy

Least I can do. Keep on crushing it.

I had my wife take a picture of the oncology nurse giving my last treatment of the Red Devil. In red and thirty minutes later out yellow. Shortly after my second treatment I was trimming a bush with a hand clippers for something to do. Tore the tendon in my right baby finger. I have a permanent hook on the end of that finger. Pretty sure it was the drugs and the slightest stress did the trick. It gets achy from time to time. As I mentioned drugs caused a case of prostatitis. Spin biking causes issues, seat pushing on the pereneum, so no more of that. Never was an issue prior to chemo, but my tumors were concentrated along the small intestine, which was also treated with 20 sessions of radiation. Low dosage,so could have been worse.

I think I identify with other cancer survivors, but at the same time don't identify myself as a cancer survivor. If that makes sense to anyone other than myself. The shock of the initial diagnosis is the worst. The unknown. Once there were choices and a plan, I was OK. Some of that for me was just learning something about my disease. At that point I could ask the questions. I read everything I could find. Perhaps my personality. Last step, putting trust in the physicians, like a coach, gave me piece of mind. Worry was left to those first few post therapy CT scans.

Running and Life, or, Running versus Death

Sub-8 Mile's Battle-o-Rama

(maybe this story will, in some way, help someone you know; if so, that's cool. oh, and F Cancer.)

Chapter 10

Friday, September 16, 2016

I wake. Then I remember. F***

I'm at home, in my quiet cottage. It's a peaceful fall morning. The sun is streaming in, yellow rays illuminating the still-green leaves on the towering oaks outside. Looks like a gorgeous day.

I sit up in bed, leaning back against the headboard. Just for a few minutes, to reflect. To get my head together. I inhale, and slowly exhale through my mouth. There’s a gurgle.

Huh? What was that? Some kind of a sleepy morning thing? I try it again: inhale … and exhale. Gurgle.

It’s like 30 or 50 little bubbles down below my windpipe, their small distinct moist popping clearly audible from inside me. I breathe, they gurgle, I listen.

Breathe. Gurgle. Listen.

It occurs to me that I am now having a conversation with the thing that is killing me.

I choose not to think about that right now.

Instead, I make some phone calls. I tell them what I want to hear: My cancer -- it’s back, again. It’s in my lungs now. That sounds bad, I tell them. But we killed it with chemo last time, and that’s pretty much what’s going to happen this time.

No big deal, I tell everybody on the phone. I’m just letting you know.

I keep making calls, repeating the story that I want to be told. I haven’t even gotten a prognosis, much less a treatment plan, but this is the story I’m telling.

I call everybody I can think to call. I like the story I’m telling. The more I repeat it, the better I feel about things.

****

Hours later, my confidence is restored. I decide to jump in the shower.

I get in and turn on the water. Standing, soaping, rinsing. Halfway through, I realize that this is becoming difficult. From the effort of standing up and moving my arms around, I’m getting winded. I don’t have enough oxygen for this. Can I make it through the whole shower, or should I quit now and towel off? I should probably figure this out, now.

The effort becomes too much. I cough uncontrollably. Doubled over, the phrase "hacking up a lung" begins to have real meaning. Blood spatters onto the walls of the shower. I grab onto the sides to prevent myself from slipping.

There’s something in my mouth. I spit a hunk of fresh red I-don’t- know-what onto the shower floor. Leaning closer, as the water streaks red to the drain -- to my horror I am face-to-face with a tumor. I collapse, clinging to myself and sobbing.

Not from exhaustion.

Not from lack of oxygen.

From sheer abject terror.

You can start finding out more about exercise-oncology by listening to some of his guy's podcasts (REACH; disclosure, I'm in one). Better yet, follow him on his social media, he posts studies and his followers are mostly scientists/MDs (follow them too). Ciaran is more of a resistance training specialists (his PhD).

https://www.stitcher.com/podcast/ciaran-fairman/reach-podcast

A MUGA scan would also show what your Left Ventricular Ejection Fraction (LVEF) is. An exercising MUGA would be best, if you could get that, most are resting. Cancer treatments can impair LVEF, which would affect your training.

FYI, me:

Follicular Non-Hodgkin's Lymphoma (FNHL), stage IV, 2010, ABVD treatment (Adriamycin, Bleomycin, Vinblasine, dacarbazine).

Hodgkin's lymphoma, 2010, ABVD treatment (same time as FNHL).

Diffuse Large B-Cell Lymphoma (transformed from FNHL), 2013, ESHAP+Rituximab treatment (etoposide, (S)olu-Medrol - Methylprednisolone, (H)igh-dose (A)ra-C - cytarabine, (P)latinol - Cisplatin).

Allogeneic (donor, brother) stem cell transplant, 2013 (Campath, Fludarabine, Melphalan).

In 2013, each day I rode a stationary bike in my hospital room, and later on the isolation ward I jogged on the treadmill until marrow ablation, then walked, including hill intervals. I also walked the hospital and isolation ward halls a lot with my iv trolly in tow. However, there has been a recent study on exercise during cisplatin-based chemotherapy, which was stopped due to thromboembolic (TE) events (

https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.33151

) . I had an adverse event (chest pain and BP drop), but they ever figured out what happened to me (24 hour EKG plus a CT scan of lungs to look for a clot).

I've been able to get back into good shape (6:15 for a mile & 1/4 on a treadmill this year), but it takes time. I think muscular strength is what is most limiting (i.e. Kevin Castille). An age related HRmax limited cardiac output too. I posted a VO2max of 72 a year after transplant, so aerobic fitness wasn't lost.

Running and Life, or, Running versus Death

Sub-8 Mile's Battle-o-Rama

(maybe this story will, in some way, help someone you know; if so, that's cool. oh, and F Cancer.)

Chapter 11

****

Friday

Ok … ok. … all right. This is this. This ain’t something else. This is this.

I collect myself and stand up in the shower. The water washes my reddish-pink tumor down the drain. Gone but certainly not forgotten.

It’s Friday. My appointment is on Tuesday. I have to make it to Tuesday.

I focus. With measured movements, I towel off -- minimally, so as not to waste oxygen. I walk slowly to the kitchen and begin putting food into a bag. Not much; I can’t seem to eat anyway, and at any rate I’m not hungry, but I don’t plan on coming back downstairs except if I really have to use the bathroom.

On Tuesday, I quietly decide, I will still be alive, because I am making it to that appointment.

If the workout calls for a 1 hour hard run, then you know at the outset what it will be: 1 hour, hard. It will be hard at 22 minutes, it will be hard at 36 minutes, it will be hard at 55 minutes. And it will not be done until 1 hour is up. No more, no less. If you push the pace it won’t work out. You have to make it, in just the right zone of hard effort, for exactly 1 hour. As you begin, you are focused both on the end and on every moment of what it will take to get there. One long steady controlled effort, and then you will have made it.

I grab some water bottles and slowly - slowly - creep up the stairs, bag of food in hand.

****

Saturday

I’m in bed. Food and water are within arm’s reach. I am not moving.

I am breathing. I am alive. I am making it to Tuesday.

Inhale. Exhale. Gurgle. Inhale. Exhale. Gurgle. Inhale. Exhale. Gurgle.

This is a race. I must maintain this pace, this effort, steadily or I won’t make it. Too much effort and I may lose consciousness, possibly with insufficient oxygen to wake back up. Too much effort and I may cough violently, rupturing tumors deep inside my lungs and drowning in the resulting hemorrhage.

Inhale. Exhale. Gurgle. Inhale. Exhale. Gurgle.

In this race, I am being chased. Not by competitors who may pass. A multiplying mass of hundreds of nodules that will take me out if they can.

I’m counting on my heart, remembering the long-ago coach who enthusiastically said that someone with some speed and a low untrained resting heart rate like mine could do well if trained aerobically. I’m counting on my red blood cells, once tested at 50% hematocrit, apparently at the high end of the natural range. I’m counting on my lungs to keep getting oxygen into my bloodstream in spite of hundreds of nodules crowding the space in my chest.

Inhale. Exhale. Gurgle. All day. This is the pace. I am making it to Tuesday.

Stay calm, stay focused. I am making it.

Inhale. Exhale. Gurgle.

****

Sunday

I’m in bed. I haven’t moved, except use the bathroom once and to nibble a few bites here and there, and some sips of water. I can’t eat much; I don’t know why, but it’s fine. I am making it to Tuesday.

Inhale. Exhale. Gurgle.

Five years earlier, I spent a weekend waiting between diagnosis on Friday and surgery on Monday. Little did I know at the time, that weekend had foreshadowed this weekend, which I am now spending quite intimately with the cancer.

Inhale. Exhale. Gurgle. I am making it to Tuesday. Inhale. Exhale. Gurgle.

From Friday to Saturday, Saturday to Sunday, Sunday to Monday, Monday to Tuesday. That’s how far I have to make it. Four days. 4 laps on the track. Running the mile, as hard as I can while still finishing. Right now, I’m on the 3rd lap. The mile run is won or lost in the third lap, right?

I will finish this mile.

Inhale. Exhale. Gurgle.

****

Monday

Last lap. If you’re going to die, this is where it happens.

Inhale. Exhale. Gurgle.

A friend stops by to see how I’m doing. It’s nice of her, but I’m not sure it’s worth the exertion of having to leave the bed, walk downstairs, let her in, and walk back upstairs to lie down. She sits next to the bed, looking at my gray, poorly oxygenated pallor. Her facial expression tells me she thinks I may not make it. She has medical and end-of-life experience, so her unstated assessment shakes me out of my quiet focus.

“Will it hurt?” I ask her. She pauses for a second, glancing at the red-stained paper towels scattered about.

“Sometimes it does,” she says, very, very gently. “Sometimes the person just loses consciousness and doesn’t wake up.”

I’m not sure whether this reassures me. My heart rate begins to rise, and I can’t have that. I force myself to calm.

Inhale. Exhale. Gurgle.

My friend agrees to help me get to the hospital tomorrow. She gets up and lets herself out.

I am going to make it.

Inhale. Exhale. Gurgle.