Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, April 30, 2009

Replicating Symptoms from Cheotherapy Among the Healthy

I’ve devised an exercise in my head to educate people regarding how it feels when recovering from chemotherapy.
Feelings and symptoms of this magnitude can not be described in words. My former hematologist told me once about an excericse bike he had used at a conference.
The gears had been altered for maximum resistance.
This was done to illustrate to healthy people exactly how it feels to move after receiving chemotherapies.
I thought this idea was great.
During treatment, I equate standing for 15 minutes of standing equivalent in energy expenditure to my previous 12 hour workday.
Examples like this have been done with teenagers and pregnancy for a while. The situation is simulated to form an indepth holistic understanding of the experience. A stomach can be strapped on in varying weights and sizes.
Once pregnancy simulation is over, the stomach turns into a cranky screaming robot baby with colic.
People get the picture pretty quickly regarding how miserable pregnancy and parenthood could be, especially if you are not prepared.
This can be done for chemotherapy to expand on the bike experiment and to replicate my experience.
This way everybody could be educated almost how it feels to be in a body like mine.
I say almost, but not quite, not ever, doing that to people would be sadistic. It would never be ethically approved.
I would start slowly.
Fatigue is the most common complaint with chemotherapy. There is very little that can be done for chemotherapy induced fatigue.
Making coping with fatigue more difficult is that the word fatigue, and anything else in the English language, does not describe how diffuse the problem is.
It is not being tired. It is not needing a nap. Think of the day that you felt the most fatigued, that you just could not go on. Think about 2 pm at work when you’re reaching for that cup of coffee or tea to stimulate yourself for the rest of the day.
Then multiple that feeling by 10. The fatigue is painful. Moving your arm is a chore.
For a healthy person to feel this, I would strap them in weights. I would start in the legs and arms. I would lay them down, strap them with weights, then ask them to do their daily routine.
Then after a normal activity of daily routine is done, such as getting breakfast and taking medicine, I would have them repeat this, with more weights.
To simulate how respiratory complications feel in combination with fatigue, I would strap weights, tightly, to the chest.
Pneumonias do feel like there is a weight on the chest. So don’t mediastinal masses (tumors in the middle of the chest) that lymphoma patients frequently present with.
If you don’t feel like you are choking and suffocating, you are not doing the exercise properly.
I can feel tumors, masses and infiltrates. A tumor in my neck often feels like a person constantly pressing on the apple in my throat, all day, all the time.
Push on your throat in the center at the trachea, now try to swallow. Try to lay down in bed and get comfortable with all those weights strapped to your arms, legs, and chest.
Just, for the fun of it, try to roll over. Try to cross to the other side of a king size bed to reach the phone.
It feels like crossing the Himalayas. If you wonder why somedays you call and I don’t pick up, now you know, the phone is on the wrong side of the bed.
These things are just a fun place to start, but there is more, so much more suffering to simulate.
I’ve been through a lot of it, I want you to know how it feels sans cancer.
The feeling in my hands and feet were the first to become impaired as a chronic side effect of chemotherapy. This is called a neuropathy.
It can be painful. Mostly, it impedes functions.
Place two pairs of hospital issued rubber gloves on your hands and feet. Then try to go about your business. Try to open child proof pill bottles. Try to pick one single pill out of that bottle. Try to dig out those individual wrapped medications in foil, like Benadryl, kytril, etc.
I will take ativan for nausea even though I dislike the mental haze because I can get the pill easier than kytril.
Good luck with trying those tasks. It’s one big pain in the ass.
These are all special starter steps.
This doesn’t even delve into what it feels like undergoing intense therapy with muscle atrophy. I haven’t thought of a way to recreate that.
If you want to really go all out, feeling the feelings of a patient, bowels are frequently effected in care. Every aspect and possible problem related or associated with the bowels can occur.
Nausea, vomiting, diarrhea are all common complaints.
Most frequently I experienced abdominal cramping-like symptoms. This is accompanied by cancer pain when tumors try to take over space in my abdomen.
I can’t think of how to replicate this without semi-self mutilation. I liken it to lining up needles all around the abdomen and poking. Leave the needles in, walk around a little bit. Don’t want to walk? The Pain is too much? Just try to move to reach your narcotic bottle.
Use your imagination. You’re wincing in pain aren’t you.
But this is not all, this is not the cramping. Woman, let’s talk cramping. Men, you may know how we woman can behave when we’re faced with cramping pains.
It makes us moody, cranky, and down right unfriendly. There is too much uncontrollable pain to simultaneously play nice.
People wonder why I get so cranky and intolerant. It’s from terrible, excruitiating pain and discomfort.
Multiple those abdominal cramps x4. Think about suffering from this for just one week after a therapy infusion.
Now, with the eights, the gloves, and the cramping pins and needles, try to make a phone call for help.
Imagine waking up and feeling like the sand man came and gave you a beat down in the middle of the night. Your family has left for school and work. You need to move.
Put a sweat, soothing voice in the background for music.
Have it say, "Just relax. Go to sleep. Rrreeeesssttttt. You need to sleep." Make sure that voice resembles your inner voice, the one that comforts you in time of fear.
Your body really wants to lie down and close its eyes. It is asking you too.
Then muster your courage, scream in your head, "You're trying to put me into a coma! I won't be found for 8 hours!"
Try dialing those 10 digits to get ahold of your provider.
I’m not trying to scare anybody.
These symptoms are all manageable with modern day medications.
It is important to know your bottle and take your medications before the pain becomes so severe it interferes with life.
When I saw interfering with life, I mean if it interferes with moving, walking, rolling over, eating, swallowing.
There is a lot of shame associated with the use of controlled medications.
Micheal J. Fox says frequently about his disease that “vanity is the first thing to go.”
Diagnosis and treatment is not the time to worry about whether your neighbor, mother-in-law or babysit think you’re a crazy, raving drug addict.
Now is the time to do what needs to be do to survive. Medications are for self preservation. If you are suffering and allow the side effects to stop you from moving, other more diffuse problem will develop from lack of activity.
These problems include respiratory infections, muscle atrophy, failure to thrive, ulcers, embolisms, inability to walk, sit, and on and on and on.
Medications are available and prescribed to prevent these problems.
A physiological addiction is easier to treat than the aforementioned problems.
I would rather have a maximally healthy addicted body in the face of my cancer than a wasted, atrophied, unmedicated one.
Now, at least, hopefully, people can experience some of the experience to be in the body of a chronically ill person, specifically a cancer patient undergoing treatment.
***FYI- If These cartoons really seem to illustrate my experieces, it is because they are drawn by my friend T. McCracken special for us. Google her or see .****

1 comment:

Heather said...

if you could get this replication program started i will be your first source of funds! seriously you have it right on.

i consider myself lucky to have been put into remission with my first line of treatments. i really do. unfortunately i am in the less than 5% of mediastinals whose superior vena cava syndrome didn't resolve with treatment. and, have atleast 3 of the major chest/neck veins dead. and it's miserable. nobody can even begin to understand unless they've been there.

and...i can't begin to understand the pain and wear and tear from salvage chemo, transplants, etc. but i truly take your's and other's words who been there that it sucks the big one.

sorry for the ramble, just wishing that people who haven't been there could see for a moment that their "head cold omgosh it's probably swine flu" is not what i really want to hear about. that out. LOL

hillary i'm wishing you the best possible weekend ever. =)