Burkitt’s Lymphoma Recovery Tip #8 Neuropathy

Neuropathy – I think we’ve established that I am not a doctor; I am not a particularly good patient and I’m surely not a doctor. This neuropathy stuff is Bravo Sierra. For those of you who haven’t been in the Army-- Bravo Sierra means BS – get it? BS?

Okay. If you’ve gone through the wicked nasty chemo, chances are you’re probably good pals with that ripping, tearing, excruciating pain radiating across the top of your feet. You’ll be walking in some store with your loving whomever, and out of nowhere it feels like a hammer has rapped the top of your foot.

Well, like I said, I ain’t no doctor.

Obviously, you need to go see your oncologist and get some professional help. Even so, there are some things you can do.

Avoid stores with concrete floors. Those are killers! They seem to be catalysts for the pain.

Get some marbles. You know marbles. Like kids use.

Spread the marbles on the floor in front of your favorite chair and ever so gently role them under your feet. You might also go outside and get the welcome mat from the front door the rubber one with the little things that stick up, or one of those tan coarse fibrous ones, bring it in the house and scrunch it with your toes.

Lastly let somebody gently massage your feet. I hate having my feet touched so it was quite a challenge. As I understand it these exercise help you take charge of the sensations of your feet (at least a little) and as you get further and further away from the chemo the neuropathy episodes will get further and further apart.

Here is a link that might help http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/basics/definition/CON-20019948

CAUTION! CAUTION! SPURIOUS LYMPHOMA ADVICE AHEAD.

Okay this is the best advice you’re going to get, but most will tell you I’m crazier as a loon. Ready?! Attack you goal with reckless baby step abandon. Push yourself to the point of exhaustion, rest, and do it again.

When I finished chemo I could only walked to stop sign about 200 yards from my house and back, but I forced myself to keep at it. Soon I was at the stop sign plus the trashcan and back. A bit later I passed the stop sign to the basketball court and turned down the street to the dog that runs back and forth behind the fence. And on it went.

I had to overcome the neuropathy (avoid really hard floor at big box stores or anyplace with a purse department with no chairs), fatigue, bad shoes, bad weather; so will you. After gutting it out for a couple of months I was able to trek ALL the way around the block. I felt like Marco Polo returning to Europe forms the Silk Road.

Having accomplished that task I moved onto the bicycle. Well, we’ll talk about that later.

What you need to do now is attack! Attack! Attack!

Burkitt’s Lymphoma Recovery Tip #6 Hernias Are Hiding

Man I’ve got a headache. Not so bad that I won’t write our super fantastic tip. Ready? 

BEWARE OF HERNIAS. Odd kind of tip, I realize that. But it is important nonetheless. Depending on what goals you are trying to achieve you may put pressure on a spot on your body where you had a tumor removed. It goes kind of like this – you go in and they remove a tumor, some surgeon gives you a preliminary diagnosis of lymphoma, when you achieve the minimum amount of healing you go to the hematologist, and he says, “Holy Toledo you have Burkitt’s, we need to get you to the hospital to start chemo.”

The problem is, the minimum amount of healing isn’t complete healing. So when you start chemo and your platelets drop, the internal healing of you incision and other stuff they cut through can slow way down and even occur unevenly.

So depending on your goals, you might feel a pull here or tension there, or even a teensy weensy lump near the incision, which might be some type of hernia.

If you feel this and are planning to run a marathon get you surgeon to give this a second look.

Burkitt's Lymphoma Recover Tip #5 Setting Goals

So you ticker is working, you did an audit, and now it is time to set some goals. Slow down there you Burkittian you, we still got some more preparation work to do. Remember you can tell how tall a skyscraper is by the depth of the foundation. Let’s be thoughtful here.

If you can avoid returning to work and not face too much hardship, take this time to reflect and work on some SMART goals, you all know that acronym SMART -- Specific, Measurable, Attainable, Realistic, and Time-based. What is it you want to accomplish with this new life you have? Do you want to rush back to work? Do some volunteer work? Write your memoir? Paint the kitchen?  (That’s what I did.) Take some time and figure it out – you may never get this chance to take a bit of time and be reflective. Remember, you’ve been through a lot and now is no time to get too aggressive (there will be plenty of time for that later, trust).

This should be a psychic as well as physical goal session. I mean really -- what do you want to be? Really!?

Burkitt's Lymphoma Recovery tip #4 personal audit chart

Came up with this goofy chart. This worked for me, but different things might be important to you. Regardless, the point is to develop some criteria to, as objectively as possible, evaluate where you are and where you want to go. For example when I got sick I was able to do about 65 pushups. After Chemo it was closer to five. Obviously that told me I had lost strength and had to adjust my life accordingly or work on that area to improve my strength. If you like to hike you could compare your walking endurance before and after chemo. All these things take great intellectual honesty. Lying to yourself is the worst thing you can do. I lost some verbal ability and can’t banter as quickly as I did before chemo, so I’ve had to adjust my interpersonal exchanges accordingly.

So unless you are a superman/woman you lost something. You’re no longer faster than a speeding bullet, you can’t change the course of mighty rivers, and you’re not more powerful than a locomotive. That can be bitter pill to swallow if you’re not ready to start again. In a lot of ways ALL OVER AGAIN, but if you are there are new journeys to take and new discoveries about you. It can be quite a fun. So when you find out you’ve changed, don’t stick your thumb in your mouth and cry for more than a day. Get back in the fight, because we need you, your family needs you, and you need you.