A recipe for living with cancer.

Posts tagged ‘breast cancer’

But I Look Fantastic!

Cancer is the gift that keeps on giving, daily.  I was hoping to place Cancer into my memory files and only think/worry about it during annual exams or checkups for minor issues; this has been far from the truth.  I never liked the term survivor, never believed in the term cured and certainly don’t feel like a role model or hero, and Cancer haunts me everyday.  Every morning I obediently take my aromatase inhibitor pill to prevent any estrogen left in this body from growing and reeking havoc.  It is a teeny tiny pill, but one that is uncoated.  Therefore it has a terrible bitter taste when it hits your tongue and I try every which way to get it down without getting that small burst of yuck.  A simple reminder, but still a reminder, but I was otherwise getting into a better place with my Cancer.  And no matter who I run into, they all say I look fantastic!

Then 8 weeks ago my right hand and arm swelled.  I called the Dr.s office in full panic mode wanting to get an LDex immediately.  This is a revolutionary little machine that measures the fluid in both arms and can diagnose Lymphedema at a subclinical level, which is where you want to catch it if you are to get it. They wouldn’t see me until I went to my PCP and she could rule out a blood clot and/or an infection and if I had neither of those then I could come in for a measurement.  This test (totally non invasive and takes 2 minutes) costs $200 each time and most insurance companies do not cover the cost, luckily UPMC insurance does.  I have had 6 of these measurements with a baseline from before any surgery or therapy to after surgeries and today.  Most women, the 35-45% who get lymphedema, may not even know about this test, can’t afford it if insurance doesn’t cover it and will end up with clinical lymphedema, which is painful and requires more treatments than subclinical.

I digress, my PCP found no clot evidence or infection in my right arm and sent me for a “just to be sure” Doppler to show no clot.  Long story short, my right arm was fine but when they did the Doppler on the left for comparison, lo and behold I had a clot in my jugular- probably provoked by my 11 hour reconstruction surgery.  No pain, no symptoms, it is what is called an incidental finding.  What followed — appointments, phone calls with my PCP, Hematologists (yes plural) and arguments with Tom on what course of action to take — he wanted me to take a baby aspirin a day and forget about it.   Final answer:  anticoagulation therapy for three months to be safe… Lovenox shots twice a day (shots of heparin which I had to give myself in the stomach) for three and a half weeks, plus Coumadin daily dosing until I got to the INR number they wanted and, this is the really fun part, blood tests every other day during four weeks until they get my dosage right. I am down to 2 blood tests a week. When I am done, then I get to go on baby aspirin for the rest of my life.  I’ve gotten to know the ladies really well at the blood bank…nice women, Mom would be happy, I’ve brought them homemade cookies!

So while enmeshed in this incidental finding I put off the Lymphedema issue…until today when I went to see the Lymphedema specialist.  The previous 5 LDex tests I have been 100% normal, no fluid, the numbers and I looked fantastic.  My arm has been bothering me, aches, a bit sore and stiff, but I am getting old and these things happen.  Going in this morning that little voice in my head whispered…you don’t have Lymphedema you are just nuts and besides you look fantastic! That same little voice told me I had breast cancer when I found the lump and it also told me I was making a huge mistake doing the reconstruction surgery.  Confusing huh, I am through with that little voice.

So you guessed it I now have been diagnosed with subclinical Lymphedema.  This is where you want to be if you get it…but now the chance of filing Cancer away and not thinking about it every single day is pretty much impossible.  Look, I am still blessed, I am still alive, I still look FANTASTIC, and I probably still have Cancer in some cell hiding out somewhere in my body.  Will this change what I can and cannot do…unfortunately in some areas dramatically.  I now have to do PT, learn to massage my arm, (so does Tom to help) go through some very easy – painless- laser treatments on a scar to try and release the pressure it is putting on my lymph nodes (3 weeks every other day- 8 weeks off- then three more weeks) and wear a compression sleeve  (and possibly gauntlet/glove) every day for the rest of my life.  I cannot: pick up anything over 10lbs. (groceries I don’t care about but my grandkids…), shovel snow, suggested I wear gloves when I do everything, be really mindful when I cook and bake, if I get a cut and it gets red I must immediately call the doc and go on antibiotics and try to raise my arm every hour or so to help drainage, and try not to make myself crazy worrying about it.  This is all to keep it at the subclinical level.

I laughed after the appointment, because that is exactly how it went…10 minutes of what I need to do, what I can’t do and then she said, “but don’t make yourself crazy.”  Really???

Then I got a tad depressed and wanted to eat a bacon cheeseburger, which I am going to do for dinner.  As I have aged and gone through this, I have begun to better understand life and death. I can now understand why my Mom wanted to die after my Dad did.  Why my saying, “but don’t you want to live for your kids and grandkids and great grandkids?” made little difference to her.  She’d been married and dependent on my Dad for 60 years and when he died a large part of her died as well.  I can better understand why my friend Linda gave up living because the illnesses and treatments just got to be too much, to hard, to painful and to limiting.

I am positive and ready to conquer whatever is put in front of me 95% of the time, but today I waivered, I came out of the office charged with being proactive, obedient, and diligent, body aware, new rules of what I can and cannot do  and all those other things for the rest of my life.  You know what I mean, some nights I just want to go to bed and not: exercise (90% of the time I don’t) wash my face, floss, brush, put on hand cream, take my pills and let the dog out.  Now I’ll need to add massage my nodes.

I guess I am complaining, feeling a bit sorry for myself knowing it could be way worse, not wanting to have lymphedema as bad as my Mom and as luck would have it Tom flew out of town so I am having my own private pity party.  It seems every time he goes out of town something else medical comes up for me.  I’ll be fine, it’s just another bump in the road and there are two companies that make outrageous compression sleeves, wild colors and patterns.  I will continue to look fantastic!

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Making Peace

Surgery was 4 1/2 weeks ago, November 14.  My DIEP flap breast reconstruction surgery was a complete success.  This is the first time I’ve felt like sitting down and writing.  I’ve written things in my head almost daily since Thanksgiving, but this is the first time I’ve actually sat down to put pen to paper.  Another phrase and process lost  subsumed by technology.

I was very frightened the day of surgery, not for the surgery (although 11 hours of surgery was a scary prospect), but what unfolded in the prep area gave me pause…the IV.  During chemo I rarely had problems with the IV, every three weeks for a year left hand or right.  We are all told to stop eating and drinking by midnight the night before surgery, and I being the totally compliant patient did as I was told.  I probably stopped by 7:30 after dinner.  The next morning I was thirsty and it turns out slightly dehydrated.  My usually wonderful veins were nowhere to be found.  The first attempt at the IV instantly popped a lovely black and blue on my hand and it was all downhill from there.  Attempts in the next 48 hours for blood tests resulted in 9 unsuccessful sticks by four different individuals,  my initial IV failing and 36 hours after that my final IV failing.  Luckily I was going home the next morning and it was decided I could go without an IV for 12 hours–a huge breach in hospital protocol.  One must always have an IV just in case of an emergency just in case you need to go back to surgery.  Luckily I did not.

The first 48 hours after surgery, I must admit I had my regrets, what did I do?  In bed lying in a V shape, head up, knees up to preserve the stomach stitches I had my first viewing of the incision.  The Doc came in and ripped the velcro band from around my mid section and I looked down into a void, a V-shaped gouge  as if they’d scooped out my midsection with a backhoe, or the space after you cut out the first wedge of a lemon.  I mentally freaked.  The Doc said it looked great, and all I saw was a black and red cut from hip to hip.  What would it look like if it didn’t look great? In a post anesthesia whirl and pain med daze I questioned repeatedly,  why did I do this, how could I do this, I am so stupid why didn’t I just go flat.  My first foray out of bed and that capped it, I’d made a mistake.

Bent over at 90 degrees I could not straighten up, and the pain in my lower back felt like the muscles and skin were shredding with each step I took.  That sealed it, I’d made a huge mistake doing this.  But as with everything, the anesthesia left my system, my head cleared, pain meds still made me loopy, I came home and family took care of me and I came to peace with my decision.  I now have two breasts made of my own tissue, a tummy tuck and am very lucky to be recovering nicely.   I am standing mostly upright and slowly getting back to normal.  The scar is still slightly appalling, but that will fade.  The pain is manageable and I am getting around.  I cooked dinner two days in a row and made some cookies, I can’t complain.  And yet again, I am blessed.

 

 

Out of My Control

Tom needs a haircut.  I know this because I can look at his hair and it’s getting a bit messy and long and a bit uneven.  Duh.  When I suggested he get a haircut this week he said he was to busy, he’s going out of town, and he’d try to get it done before surgery next week.

I stopped and thought OMG it’s next week.  Totally consumed with this surgery for the last 10 months I was surprised when a slight shiver when up my spine when he said, next week.  A gnawing sense this is unmistakably a huge decision layered with all kinds of self doubt, self worth and self confidence issues has not been lost on me.   Once again I am in a situation where I have no control.  I have done everything I can to be physically fit and healthy for the surgery, gotten everything in order at home-  OK, not the office, the office is still a mess- and should be fully prepped and ready to go. Stand like Wonder Woman! Be bold, fake it till you make it.

I have been behaving like a pregnant woman during her last month of pregnancy, nesting.  Getting everything ready so we don’t have to think about or worry about things during my recovery. Control, huh.

Get the furnace its seasonal service- check; get the water system outside buttoned up for the winter, check, no un-check missed the guy, reschedule; get a new cleaning lady, check; get out my winter clothes and put away my summer, check; get out winter blanket, check; prep garden for winter, check; bring in last of seasons harvest, almost check, there is still some oregano and thyme out there. I even cleaned the two year buildup of dust and dirt around the motor of the refrigerator.

I have scheduled a cookie baking night and the kids are coming for the weekend and will help with a few other things on my list, so we should be good to go.  I think I am ready, out of control, but ready.

Mom always said do not waste your energy worrying about the things you cannot control and this last year and a half has been one long -out of my control- journey.  This is the final leg and once done I can redirect my energy and thoughts to other things.   Right now, Tom needs a haircut.

Standing like Wonder Woman

Two weeks until surgery and I am starting to get butterflies in my stomach.  I have been anxious and worried but now it’s getting worse.

The whole process of breast cancer therapy is daunting, never-ending (seemingly), a free fall and painful.  It is physically painful and emotionally painful for a long time, and the fear of a recurrence never leaves our consciousness.  The therapy process, once you understand it, is horrific in terms of anticipation and actuation, and yet we all seem to make it through.  Surgery is disfiguring and painful and the loss of a piece of your body inculcates us, we will never be the same, we need to change our body image and if you already have body image issues this just becomes another one to add to the list.  My hips are big, thighs are fat, arms are flabby, my neck is wrinkled, my hair is thin and now my breasts are… are… not there.

The mounds sitting on my chest as a result of a water balloon (commonly called skin expander) inserted and stretched to a size A/B are amorphous numb lumps that neither resemble my breasts, nor have any sensation at all. That is not true, the muscles in my breast are painful and weird in that they hurt and I can feel them move and flex when I do certain movements.  When exercising and stretching the place where the fake skin is attached hurts and pulls. The chest muscles were cut at the bottom and attached to a piece of ‘processed’ skin and reattached then lifted to the skin surface to form a pouch.  The water balloon is slipped in underneath the muscle into the pouch and filled with saline to the size you want, require or desire.

Any sexuality associated with sensation and my breasts is gone and likely will never return, never to what it was.  What will my impending breast surgery afford me once finished?  A facsimile of my breasts that will neither feel, look, nor function as before, although I do not need it to function as a milk station any longer.  They will look like breasts, possibly feel like breasts, but they will not really be breasts, they will be “chunks” of stomach tissue, muscle and fat cut from my stomach area (obviously) and stuffed into the man-made pocket made by the water balloons.  I think a lot about what they will look like, what will it feel like and what scars will remain.  I currently have five-inch scars on each breast bisecting the breast side to side.  I was quite taken aback when I first saw these scars expecting them to be much smaller and not quite so obvious.

I have spent the last year obsessed with breasts, scars, reconstruction surgery, before and after pictures, nipple tattoos, scar tattoos, blogs, websites and reviews of anything and everything to do with breast cancer, breast surgery, reconstruction of breasts and breast outcomes.  To look at my history on the computer one might begin to wonder just what kind of gruesome disturbed person I am looking at all these things.  I’ve watched mastectomy and reconstruction surgery videos over and over to become comfortable with what they will be doing and to better understand the process.  Too much information is not always a good thing.  Now I worry, what if I don’t like them, what if they are still uncomfortable like the water balloons, what if I am making a mistake and should just be flat, what if I don’t make it through surgery, or I have complications, what if what if what if.  I need to go into this surgery with a different attitude, a Wonder Woman attitude of success, instead of a what happens if it is a failure?

Brent told me about a TED talk the other day: Amy Cuddy: Your body language shapes who you are.  It talks about going into a stressful situation and how you go in shapes how you come out.  For example a job interview: go in tentative and uncertain, not feeling adequate for the job and chances are you come out without getting the job.  Go in confident, assured, knowing you can vanquish the world, go in like Wonder Woman and chances are you will get the job. Take a look at the Amy Cuddy video then think of me the day of surgery.  Right before I go in, I will be standing there next to the gurney for 2 minutes, huge blue gown hanging down to my calves-open in the back-attractive paper cap on my head, IV hanging from my arm, gray socks on my feet, hands on my hips, standing like Wonder Woman, ready to vanquish the world!

 

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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