A recipe for living with cancer.

Posts tagged ‘cancer’

Hurry Up and Wait!

I love the expression, hurry up and wait.  This has been what I have done for the last two years dealing with Cancer and it’s consequences.  When I first saw my PCP that fateful day in May 2011 and she immediately got on the phone to get me a mammogram, that was the hurry part, then came the WAIT.  The mammogram was done and then there was the wait…someone had to look at it…then I had to wait until the next day until someone else had to look at it and confirm what the first person saw. Then the regular biopsy, MRI biopsy, CT scan, surgeries, hurry, wait, hurry, wait, hurry, wait.  It’s amazing we stay sane at all with all of these ups and downs and worries.

The whole experience has been like this — the first visit to the surgeon…we need to do surgery…but you can go to Japan first because it’s probably taken 5-10 years for the cancer to get to this point so surgery can wait.  Then when I refused to have my lymph nodes removed the surgeon said, well now you have to wait for surgery and do chemo first.  I would hurry to my chemo appointments and have to sit and wait.  See the oncologist…sit and wait.  The nurses giving me chemo never made me wait, they knew, they understood, let’s get this going and over with.

Now I want to hurry, I want to hurry and start PT, I want to hurry and get a sleeve on my arm, I want to hurry before it gets worse and my sub-clinical turns into clinical lymphedema. But I have to wait for the appointments and the measurements and the therapist to call the sleeve maker and then I can get the sleeve.  I don’t want to wish time away, but there is an urgency to all of this, the urgency of being without the tumor, the urgency of getting through chemo, radiation, the urgency of getting the surgeries over with and recovering, the urgency of being healthy again, the urgency of wanting to be done and move on, the urgency of never knowing what tomorrow will bring but wanting to spend it the best way possible.  Whatever that means. Like everything else in life, I just need to wait.

My grandson keeps asking his Mom, when will it be my birthday I can’t wait…she tells him when the trees all have green leaves on them, the flowers are in bloom and the weather gets really warm (July). He can’t wait for his birthday, he wants it to hurry up, for the present, the party, the cake?  Why should he have to wait?  I have had to wait for the painful, the uncomfortable, the disgusting, the depressing, the unnerving, why should he have to wait for the fun and the happy?

Maybe I should just make him a cake and give him a present now because who knows what tomorrow brings while we hurry up and wait.

 

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.

 

 

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.

But I Feel Good

Two weeks ago I chipped two teeth and visited the dentist. Then I woke up with liquid coming out of my ear and ended up at urgent care and the next day at the ENT. I had a hole in my eardrum and had lost some hearing.  They had no clue how it had happened, maybe it had to do with chemo, radiation, or all the coughing -allergies gone wild-who knows?  Falling apart bit by bit  but I felt good.
I finally stopped coughing (about six weeks), my allergies were better but still there– but keep in mind I felt  pretty GOOD.  I had my annual physical Tuesday with full blood work to check my lipids (everything looked good she said), and my Herceptin infusion and visit with the Oncologist on Wednesday. I see the plastic surgeon next Thursday and the breast surgeon the week after that for a general check and to measure my arms for lymphadema, and then just for sh-its and grins my colonoscopy in two weeks.  I feel great but to look at what’s happened in the last few weeks and all the appointments one would think I am falling apart piece by piece.
Finishing chemo was huge, radiation even better, but I am not done yet–but I feel good.
I am now taking the Arimadex (estrogen sucking drug for 5 years)  and have to watch for side effects: aching (apparently bad enough the Oncologist said CALL me immediately if this happens); menopause side effects may return, please no; increase lipid levels which I thought would be no problem until my blood work came back. Oh and bone demineralization which I will now be on fosimax to counter.  The side effects from that…I won’t go into those.
But I feel GOOD physically,mentally though I am a little annoyed, concerned and ferclemped and fa–mished.. Here’s a topic, fracking in southwestern Pennsylvania, talk amongst yourselves.  For all you SNL fans.
What is upsetting me is my lipid levels, they are HIGH.  After two years of being a vegan and bringing my cholesterol down 55 points to healthy and LDL to normal range…I am now 85 up on cholesterol and in the high range for LDL.  I have not been a vegan for the last year but didn’t think I’d been so bad,  For how high it is I should have been eating red meat, all meat, cheese, butter, ice cream, lobster, sugar, alcohol and a Big Mac once a week!  The annoying part in all this…Arimadex causes an increase in, you guessed it, lipid levels. I have six months to try my vegan diet to decrease my numbers again, get retested and see what’s what.  The caveat is — if they do not go down, then the question will be is it the Arimadex?
Then I will have to….oh never mind
I do feel GOOD!

Killing an Ant with a Baseball Bat

 

I have finished radiation.  As with most things it dragged the first four weeks and flew by the last two.  The daily routine of getting up and going to the hospital first thing everyday with dread and resolve was quickly replaced with fatigue and painful skin and blisters.  But that too has resolved quickly drying, peeling and now itching much like a nasty sunburn from staying to long at the beach. 

 

I am through the major horrific portion of my cancer treatment and now have what one might call the “clean up” phase– Herceptin infusions to finish out the year and Arimadex for five years- like the clean up hitter in baseball.  Although not the most powerful therapy like the most powerful hitter in baseball, instead of cleaning up the bases, the therapy is meant to clean up any remaining cancer cells left floating around –a very important position in baseball you can win or lose the game, the same for cancer.

 

This is why I’ve questioned all along; is one truly ever cured of cancer?  Am I cured now since visible tumor is physically gone, chemotherapy drugs have coursed through every inch of my body and radiation has burned the local area to a crisp?  Or must I wait until the Herceptin is done and five years of Arimedex has inhibited every bit of estrogen left in my shriveled reproductive organs?  Or am I merely cured until it rears its ugly head again someday down the road when some tiny cells decide its time to divide and reproduce?  This is so random and sporadic it’s like trying to kill an ant with a baseball bat.  You may swing and hit and smash away at the tiny ants and think you’ve gotten them all; you may destroy a huge area where you see no more ants, but you will never get them all.  One or two little buggers dug down deep or were swept away from the initial area of contact…and they may pop up anytime, anywhere.  Cured?

 

There have been many articles of late on breast cancer treatment.  The most recent the New York Times article Our Feel-Good War on Breast Cancer, talking about how in the USA we over treat and are too aggressive with breast cancer, do unnecessary mammograms and in general are killing an ant with a baseball bat.

 

According to this article:

 

Many of those women are told they have something called ductal carcinoma in situ (D.C.I.S.), or “Stage Zero” cancer, in which abnormal cells are found in the lining of the milk-producing ducts. Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.

 

D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.

 

There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?”

 

The key sentence here is:

 

The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal.

 

I have invasive ductal carcinoma, which means my cancer probably started as a D.C.I.S. and developed into invasive cancer, it was not detected until it became invasive.  They cannot tell which D.C.I.S. will turn into invasive cancer, or why but had they found mine10 years ago and removed it, and maybe given me radiation: maybe I wouldn’t have had chemo and maybe I wouldn’t have had four operations, and maybe I wouldn’t have lost my breasts, and maybe I wouldn’t have been exposed to so many CT scans and MRI’s, and maybe I wouldn’t have lost a year and a half of my life and maybe it wouldn’t have cost the health system hundreds of thousands of dollars.  Don’t know about you but if I see an ant and have a tissue handy I’ll kill it, instead of waiting for lots of ants and maybe only have a baseball bat handy.

 

Tag Cloud