A recipe for living with cancer.

Posts tagged ‘pain’

Listen More Carefully

Post medical issue Hypochondria is a phenomena associated with any major illness.  Once you have had a heart attack, cancer, major surgery, or any accident you become hyper-aware of your body and it’s idiosyncracies.  Every ache, pain, twinge, pull, itch or mark becomes a major obstacle to be reviewed and examined.  I perseverate over every bump, lump and coloration near, on or around my bilateral mastectomy. Each time I raise my arm the skin pulls and the muscle is tight, but I do not run to the phone and call my PCP, or the oncologist, or radiologist. I wait, look again the next day, stretch a bit more to help the skin  and pass it off as nothing more than normal bodily changes caused by the barrage of therapies my poor body has been put through.  I do sometimes curse the therapies, the cancer and the lack of perfection (not that my body was ever perfect) but on the whole I am a relatively good patient with few anxieties but I do panic when I find a lump, I always have, because it could be breast cancer…and that one time it was.  Herein lies the irony, women are told, listen to your body, you know your body best, when something is not right you will know.  Therefore do I need to stop listening to my body after cancer because it will lie to me, trick me into thinking something is wrong?  Or do I just have to listen more carefully and evaluate more.

I also have the luxury of being married to a physician and if I am really concerned can bring him into the loop and posit the question, do you think this is normal?  And normal is relative of course.  The one area I have been remiss is this tingling in my arm and hand. This has gone on for about 6 weeks now and my personal physician says, get it looked at.

Last week was my final herceptin infusion.  17 infusions starting last July every three weeks.  It is an antibody so there are no side effects, and with my super nurse Barb I never had to worrying about the IV.  She is patient and methodical in choosing her vein, she doesn’t move quickly, remembers veins that have the little valve she got stuck on just once and quickly dispatches the iv and tapes it down.

But I digress, before the infusion I had an appointment with the PA for a checkup.  They do a cursory exam and ask you how things are going.  I mentioned a sore spot and the fact that I have had tingling in my arm and hand.  The PA immediately stopped the exam and sat down in the chair next to me totally exasperated. “Listen,” she said, “patients who have gone through what you have gone through have certain anxieties…”  I tried to stop her and say no, my arm…”no listen,” she interrupted, ” you are going to have anxieties about every little thing associated with your body.  You will think every little thing is a reocurance of your cancer and it is not.  You will worry about things that before you had cancer you would have ignored, and now you will think it is serious.  If something lasts for more than two weeks then you should call and come see us, otherwise don’t worry about it.”  Really?

I should have stopped the PA and told her to listen more carefully to me first, then talk, but I didn’t, I just wanted to get out, get my infusion get done and be DONE.  I will have anxiety forever.  I am not 100% cured, no one is, and that means someday I may find another lump or bump or discoloration, or puckering and I’d better follow-up with it.  And hopefully the person I go to will listen more carefully.

It takes so little to bring us down.

I went to the dentist this morning.  I have a tiny wire bonded to and behind my bottom front teeth to keep them in place.  This is a braided wire about the thickness of a piece of dental floss that over time, eating, brushing and munching frays and breaks and needs repair.  I was in need of some repair a couple months ago and missed my appointment for a fix and then procrastinated in making another appointment.  The wire continued to deteriorate and I found the offending wire carving a sore on my tongue.  I couldn’t swallow, eat, talk, drink or sleep without severe pain and only gained relief using that magical dental wax – GUM-not the chewing, the brand.   Most of us have had canker sores and can understand how a small disturbance in our mouth can make life miserable.

 

I didn’t realize the extent to which this had affected my daily demeanor until the moment it was fixed.  The procedure took 30 minutes to remove and replace the old with the new wire and in the process the wire egregiously poked my tongue one more time and made me bleed.  When done, with all the equipment, hands and cotton gobs removed from my mouth, the dentist said, “how does that feel?”  I closed my mouth, licked my lips and spontaneously let out a huge sigh of relief, my shoulders fell, my arms relaxed, my jaw slackened.  The doc and nurse laughed, “enough said!!” and I realized it takes so little to bring us down.

 

This wire with the tip the size of a pinpoint had consumed every waking moment without my recognition of the extent of the discomfort/fear. The wax did a fine job of covering the sharpie but I was always concerned about the wax coming off and the pain to follow.

 

On the way home from the dentist I felt so relieved and relaxed and then I started to think about my breast cancer.  Started by a microscopic cell with a mutation that kept it growing, it didn’t cause any physical pain or discomfort, but upon its discovery brought me down.

 

I haven’t written in this blog in a while, I’ve been busy and treatment free.  Yes I’ve had my tri-weekly infusion of herceptin, but that’s a piece of cake, 30 minutes and done.  I’ve been miserable with my skin expanders, but no one needs to hear more about that issue.  I have been exercising; back to eating vegan and traveling, lucky me.  I stopped taking my Arimedex because it was giving me horrific tooth pain and have yet to take another drug (procrastination is one of my big faults), which I will have to deal with sooner rather than later.  Reconstruction surgery is slated for October –which is scary and giving me nightmares– but is the end game of this process.  Do I no longer have anything to say…hardly, but not sure it belongs in this blog.  Although come to think of it, laughter and funny stories are what keeps me going so I need to rethink this.

 

Life is tough with cancer, without cancer, because the scary part, it takes so little to bring us down.

 

My Mom had Faith

My Mom had Faith

 

I sit waiting for my Herceptin infusion and as always eavesdrop on the surrounding individuals.  I listen to the stories and there are so many stories.  There is a young woman in her thirties coming in every week for Herceptin and every other week for Taxotere.  A middle-aged woman sitting next to her has been coming in for Taxotere every week for six months and double doses.

 

The young woman talks about breaking this to her children for the second time….second time…children. She is bald and says the first time she didn’t lose her hair.  I can only assume that she is holding up as well as possible, the second time.  I think about the possibility of a reoccurrence rather regularly.  I am lucky to be post-menopausal and have a good prognosis but cancer is with me always.  I am reminded constantly with the discomfort of my expanders day and night.  During the day if I move the wrong way, reach, try to open a jar, try to toss food in a pan, I am reminded.  I am reminded with side effects, when I take my pills every morning –a headache, a hot flash or get totally winded walking up the small hill on Reynolds. I have faith I will eventually not think about this every day.

 

I am reminded when I think about my Mom and her cancer experiences.  There are two vivid images burned into my memory, one is of my mothers chest as a result of her radical mastectomy.  No breast, it was a concave landscape, scooped out with a few hills and valleys intersected by bright red, thick angry scars at random angles.  The second was of a little old lady after radiation, sitting slumped down and hunched over in her over-sized BarcaLounger.  Her shoulders folded in toward each other her chin on her chest, a gentle snoring coming out of her mouth.   Beaten and battered by treatment sleeping the sleep of the downtrodden.

 

The weight of the world hung around her neck on a gold chain.  On that chain were tiny gold balls and a variety of charms and items that held special meaning for Mom.  The most important was a small chai (Hebrew letter for life) charm that was her fathers. Over the years Mom would hold onto that charm, rub it and pray. I was never sure if her prayers were directly to G-d or her father.  But she felt a connection, a faith that her prayers would be answered.  She held on to that charm as she went through cancer.

 

Mom had a list of people she would pray for. Anyone ill or unhappy, troubled, were added to the list; the list ebbed and flowed, grew and shrank, got so big she would type it out and laminate it with tape so she wouldn’t forget anyone.  Additions and deletions, life and death, her belief that her prayers could somehow ease their pain, heal them, or give them solace.  Friends believed in her as well. They would call and tell her about people and ask her to put them on her list.  She has such faith.

 

Mom was not religious in the sense that she never went to synagogue, nor did she celebrate Shabbat, and as far as I could tell had no desire to go to Israel.  We celebrated the high holidays, Passover and lit candles at Chanukah. Mom had her own relationship with G-d and it did not involve religion, it was pure faith.

 

Mom held on to that chai more as she grew older. She recovered from her first bout with cancer and her second, she carried on and had faith and made it almost 20 years with cancer…she and I were and are very lucky.  I hope this young woman is as lucky and has faith in whatever she believes.  My Mom had faith and it worked for her.

The Truth about Skin Expanders

They hurt!
Uncomfortable doesn’t cover it when it comes to skin expanders and the addition of more saline. Its difficult to explain the feeling but I think I’ve come up with a few different examples that might ring a bell with most.
There is no incision pain because the entire breast is numb to the touch. According to the surgeon this will go on for a few months. The residual pain from the surgery is caused by the edges of the skin expanders all around where I have sensation and feels like something is sticking me in the chest which it is. I can deal with this, it’s the pressure from the saline expanding the skin that makes me cringe.

Ladies who have breast fed…remember the sensation when your milk came in and your breasts were so uncomfortable, tight, and feeling as if they may burst? The relief came as the baby nursed and relieved the pressure of the milk in the ducts. Well think of that sensation with no relief, no let down, no release, just pressure…oy. I must wear a good sports bra during the day and at night and I sometimes feel like I just want to scream. A couple days before the next injection of saline it begins to ease up….and starts again. Thank goodness only one more.

For you fellas…think about over-eating on thanksgiving or any holiday dinner where you cannot swallow another bite and your stomach feels like it will bust. You are wearing a tight pair of pants and cannot open a button, or loosen your belt, or lay down and relax, your innie belly button has popped out you are so full. It doesn’t digest and you wake up the next day feeling exactly the same way, like your belly will bust. This is how skin expanders feel.

Simple huh!

BTW I will need radiation therapy as it turns out. The radiologist was coherent, smart and logical and everything he said for getting radiation therapy made sense. If there is any sense in irradiating a portion of the body every day for six weeks. Hmmmmm.

Gamblers, Heros and Survivors

How can you understand what chemo therapy is like unless you’ve gone through it? After lots of time to think about this and still more to come I’ve come up with an equivalent that might ring true to people lucky enough not to experience it.

Think about the worst illness you’ve ever had, lets say a really bad flu that lasted a week and when you thought you were better you had a relapse.  The aches, the fever, the chills, the vomiting, etc, not being able to eat, light bothers you, you can’t read or watch TV, you just want to curl up in a ball and have it over with.  Then even when you are done you feel weak, washed out and want to sleep for another week.  OK have I set the stage?  Now think of that illness and realize that once every three weeks for a total of 8 times, you have to go through it again.  You have no choice, you know exactly the day it will start, you know exactly how bad you will feel and you know there is nothing you can do to stop it.  Add to that the knowledge that each time it will take a day or two longer to recover and you may get another symptom, like an infection and you need to add a stomach wrenching antibiotic, or your nail beds will turn black, or your hair will fall out, or your mouth will be full of sores and even though you may want to eat you cannot.

This is what chemo patients are given, a schedule of pain, discomfort and hardships and as many tools as possible to deal.  I have never before understood the bravery of all chemo patients, the intestinal fortitude it takes to go through this, the sheer will to know exactly what horror to expect, and to continue to sit down in that chair with a smile without screaming “what am I doing here” and running out the door.  I am just starting to feel better today and one of my first thoughts this morning, a week from Thursday I have to do it again.

Each man and woman who consciously makes the decision to sit down in that chair every two or three weeks and expose themselves to the hardships involved is a hero. Those who have gone before and those who come after, all heros.   The word survivor is aptly applied to those who have fought this battle successfully and hero should be used for all those who have fought.  Now I don’t feel like a hero, but I now look around that infusion room at the women in all those chairs who are on infusion 7 or 3 or 5, they are all my heros, if they can do it, so can I.

When we get a diagnosis of cancer we all become gamblers.  We all take a gamble, we play the odds when we get chemotherapy, some of us get better odds than others, certain cancers have better outcomes than others.   I am a gambler every three weeks when I sit down in that chair and allow a stranger to put things into my body that I know full well will hurt me as well as help me.  I am gambling that the help part outweighs the hurt.  I hope to win this bet and become a survivor and then become a hero to those who follow after me in that chair.  The hardest part of this bet…I have wagered  my life.

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