A recipe for living with cancer.

Archive for September, 2013

Traveling with Tom

What has changed since my diagnosis with Breast Cancer? Traveling with Tom has changed.  Now able to travel again the tables have turned somewhat and now Tom worries about me.  Are you too tired, can you do this, do you want to do this, be careful, are you hungry? Are you sure comes at the end of many sentences and to most things I answer, don’t worry I am fine.  I am mostly fine, I tire more easily and unfortunately have gotten many more migraines in the last few months than I’ve had in the last few years but other than that I am good to go.

I still worry about Tom.  I watch his step, look at where we are walking, warn him of steps, lunge after him when he doesn’t see a car, look both ways multiple times before crossing a street and watch him during meals.  He still has swallowing issues and chokes so I am constantly saying, are you OK? Do you need water?  He is constantly worried about what I can eat at a restaurant, I always say don’t worry I can always get salad.   I am constantly worried when he eats at any restaurant that he might choke and he always says, I’m fine.

He worries walking to far will tire me out, I worry walking to far he might get tired and miss a step and trip and fall.  It is a comedy of sorts, a loving comedy of concern and love for each other and our infirmities.   In reality nothing has changed, Tom has always been concerned about me, now it just has a medical issue added.  I have always worried about Tom and now it’s knowing what could happen since it did happen and wanting it never to happen again.

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Two bowling balls on my chest

Traveling with skin expanders should be no different from everyday living, right? Every time I fly I feel the expanders get harder as if they have had more saline injected i into them.  I know this isn’t true, I know the saline is inert and should not expand under pressure, but I swear, every time I fly, the next day I feel like I have two bowling balls on my chest.  They feel fuller and  more pressure than before, but this is not logical.  After just writing the post on hypochondria I should be able to say, it’s all in my mind, but it’s not, its in my chest and painful.  It doesn’t look bigger, the tension when you press on it seems the same, yet it feels different.  Could this be phantom pain?

UPMC recently called me and asked if i would participate in a survey based on my bilateral mastectomy and phantom breast pain.  I’d thought about this a lot since the mastectomy and had moments when I thought I was nuts.  Moments when I had the feeling of let-down associated with nursing a baby.  The first few times it happened was early on and there was still much discomfort from the surgery.  But later after most of the discomfort had disappeared I would suddenly feel that let down, and would look down, almost expecting the milk to start flowing.  The questions on the survey involved mostly itching and pain and I was surprised that someone else knew about this.  It still amazes me how much of a bubble we reside in during breast cancer…of course other people feel these things.  And of course you would, you just lopped off two very sensitive body parts and how could I not expect to have phantom pain?  The pain wasn’t the worst part, it was the itching–I will get this terrible itch and need to scratch, and when you go to touch it, you are totally numb, so scratching has no effect on the itch.

This is mind bending, having this incredible itch and having no way of effecting it.  But cancer and cancer treatment in and of itself is mind bending.  Removal of breasts, infusions of toxic substances, radiation producing blistering burns all in the name of healing.  And our bodies do heal, and our minds chug along behind trying to make sense of it all.   Someone called me a survivor the other day, the first time since this began.  I don’t feel like a survivor, I feel embattled, tired and confused.  Everyone marvels at my great attitude and how great I look, how upbeat I am.  And I am, unless I get off a plane I’ve been on overnight and feel two bowling balls on my chest.  Then I feel this is the confused time, the tired time, the time I may not be so upbeat.  But then my overnight plane ride brought me to Israel and I get upbeat again.  So big deal, two bowling balls on my chest, it’s only temporary, surgery is soon…then I’ll have something else to complain about!

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.

 

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