A recipe for living with cancer.

Archive for December, 2012

Control lost, Control given

I am done being depressed.  First of all its no fun, it’s depressing, second I hate a pity party, especially my own and third it accomplishes nothing.  I saw two docs this week and did not get the outcome I wanted, the control I wanted.  I wanted to have the reconstruction and mastectomy done at the same time, then radiation and be done with it by the end of March.  If there was any skin deformities from radiation I could deal with it and the miracle of plastic surgery could tweak it, fix it, correct it and be on my merry way.  No matter who I speak to radiation is a breeze, “you might be fatigued but that is it,” “its nothing compared to chemo,” “the hard part is done.”  Great it’s so easy and virtually side effect free then why can’t I Control my own destiny –damn cancer!

The plastic surgeon was totally honest with me and said he most likely could not fix any damage done after radiation to an already reconstructed breast.  I swear he told me the last time –he would do the reconstruction and then deal with whatever the radiation did to the skin.  This time he said: “you’d probably have some shrinkage and pulling of the breast and it would be very asymmetrical and you would even see it in clothes.”  Now that picture stopped me cold, it’s one thing to be a little lopsided but I am just self conscious enough to know I do not want to look that way in clothing…I’d rather be boobless!

He of course would do what I wanted, because in fact we do have the final word on what we want, can say yay or nay, walk out the door, find someone else,   but he would not guarantee me anything.  I don’t want a guarantee…I want control and to be done with this.  No, the truth is I do want a guarantee, I want it my way and I want perfection and I want a miracle performed.  Because that is what we all want.  We see so much on TV, magazines, the internet of what is possible, things docs do is AMAZING and perfect and transforming.  We are blinded by the aura of perfection we have simultaneously watched and longed for, foisted upon us by marketing manipulators who practice our every step and direct us daily.  And final say, we have the final say after they paint a picture and manipulate us to the point of caving in…I wish I had recorded the first conversation.

I wish there was not this feeling of standing on the railroad track with the engine bearing down on me.  Three lines sit in front of me, if I move to one I know the engine won’t hit me, I move to the second  the engine probably won’t hit me and the third I know it definitely will hit me.  It’s like cancer…staying with the treatment protocol and its timing (surgery has to be 4-6 weeks after chemo, don’t want the cells to grow), radiation needs to be 4-6 weeks after surgery and pills for 5 years), we know this works.  Go get a second opinion, time is flying, more tests, maybe the same protocol, and we probably will have the same outcome, but we are not sure and third do nothing…cancer wins.

Every survivor I talk to says the same thing to me…”you will be fine.  The chemo is done, that is the hard part, I don’t remember having any issues with: neuropathy, numbness, oh yes my hair grew in quickly, and my brows and eye lashes, hmmm radiation, no I was just tired.”  Most seem to have blocked out everything either refusing to remember because it is to painful or chemo brain has done its job.

Women who have worked through all of this are better off, to have some other focus besides your body being twisted and tortured.  I guess I want to bear witness, yes this is going to cure me, but at what cost and is there a better way?  Excess exposure to radiation is known to cause cancer; lets not quibble about all I’ve been exposed to in my life, or the past 6 months, and I have to go through six weeks, every day.  I am sure they will tell me it’s a small amount and localized…compared to WHAT?

The truth.

I joked about waiting for my eyebrows and eyelashes to grow back with the anesthisiology nurse taking me to the OR.    She told me she’d gone through breast cancer over five years ago and her eyebrows have never really grown back.  An honest answer.  My friend Linda freaked after week five of radiaiton and told her radiologist she was done, she could not take another day of radiation.  It hurt, it made her exhausted, no more she told him…an honest answer.  If radiation is not so bad, easy they tell me, nothing compared to chemo, then how does it cause so much irreparable damage to the skin and breast area that my illustrious plastic surgeon cannot fix?  “you’ll just have a sunburn, the skin will harden and shrink and you may be fatigued.”

Sunburns hurt and blister and peel and damage the skin…skin cancer; skin hardening and shrinking cannot feel good and fatigue, well I will give them that one, I know fatigue. Once again I have given control over and hopped back on the cancer cure train.  Stop four, bilateral mastectomy with skin expanders; stop five, radiation; stop six, six months down the road, reconstruction surgery; stop seven, jump off and take your herceptin and arimadase inhibitor for 5 or maybe 10 years and we will call you cured.  I used to like trains- not so much anymore.

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I was Supposed to Deal with this Friday.

On Tuesday I had a Sentinel Node Biopsy.  They shoot dye into the lymph nodes in your breast to determine if there are any cancer cells left after chemo to FURTHER determine if I need radiation therapy.  They removed three lymph nodes and sent them off to pathology.  The surgeon said she would call me Friday with the results and as before, waiting is the most harrowing, frustrating and frightening part of this process.  In the interim of a biopsy and the results the brain refuses to be logical; do not think about anything until you have the results, do not worry it will do no good, do not think what if–it is a waste of good brain function and time and will get you neither closer to the answer, nor more centered, one must just wait.  Tell my brain.

I went into the surgery with a positive attitude thinking I would still have my mastectomy and reconstruction on January 7th.    Will I ever learn nothing about cancer is straight forward, logical or anything you can depend upon.  At least not in my case.  I was forewarned, the breast surgeon mentioned before surgery if I did need radiation they would need to put in a  skin expander to keep the skin stretched until reconstruction at a later time. Skin expander could be the topic of another blog post, lets just say I don’t want one.  If I have learned nothing else, I have learned one thing, medicine is totally segmented and partitioned where the breast surgeon doesn’t know all the answers and one must ask the plastic surgeon, or the radiologists, or the oncologist.  Medicine has become so fractured and “specialized” a simple question requires an appointment with a specialist to have it answered.  I drifted off in the operating room thinking we’ll see about skin expander…its not over till the plastic surgeon, or the oncologist or the radiologists sings!

Each day passed much the way molasses drips out of the bottle with the lethargy only reserved for those on vacation, or those counting the days until something wonderful, or awful is scheduled to occur.  Why wish time away, why lose any precious time in this truncated journey we call life, why not fill every moment with that which we most enjoy.  I guess I’ll never learn I wanted to get to Friday and get results.

I was surprised by a phone call Thursday AM from the surgeon, this couldn’t be good. It wasn’t Friday, the results were supposed to come back on Friday and on Friday I could deal  but not on Thursday.  I wasn’t prepared on Thursday, Thursday was supposed to be a fun day of getting stuff done and maybe seeing the kids, going out to a holiday party.  I was prepared for the results on Friday, mentally, physically, emotionally, but not Thursday.

The news was simple, there is still cancer in the lymph nodes, I  need radiation and this changes the course and planning of surgery.  I needed to see both surgeons again to go over our course of action and see a radiologist.  I hung up the phone stunned, immediately tears pooled and anger and frustration simmered.  It is Thursday, I was supposed to deal with this Friday.

I had this little voice in the recesses of gray matter, hiding behind the memory file and the flight or fight response synapse, “you knew you would need radiation, the way this has gone, your Mom, the battle is not over, the dandelion roots are deep, you will survive.”  Oh crap!

Once again I am at a loss for what will happen next- until next Wednesday and Thursday when I see the breast surgeon and the plastic surgeon and we discuss “options” whatever they might be.  It’s a control issue again, I wanted my life back and control,  I’d hoped by March to start traveling, getting back to normal- healing.  I know for certain on January 7th I will have a bilateral mastectomy…I know I will need radiation, when I don’t know, reconstruction, when I don’t know.

I know Thursday I became depressed. I got some errands run, went to the holiday party where three people I’ve known didn’t recognize me, even as I said my name,  they shook my hand and said, “nice to meet you, and how are you affiliated with UPMC,” and when I said I am Tom’s wife were taken aback and mortified they didn’t recognize me.  Ordinarily I would have reveled in their embarrassment, but it made me feel sad and added to my depression.

This morning was no better, all I wanted to do was sleep.  I had Pilates at 1 pm and seriously considered canceling but knew if I did all I would do is sleep and become more depressed.  I went, Lynn was wonderful as always, and it got me to sit down and write which always helps.

It was Thursday instead of Friday oh well, I will keep plugging.  Maybe I should focus on my hair growing in and starting to look crazy, I can do something about that…hair gel anyone?

Not the Best Time to Watch Dr. Oz

Do you watch Dr. Oz?  I flip channels and if I happen on his show I will pause and watch.  How could I not watch as he or the promo entices:  “these three things are on your must eat list to lose weight naturally” or, “these things found in your refrigerator will make you look 10 years younger” or, “10 minutes of these exercises will shape your thighs and buns” or, “these simple ingredients will naturally lower your blood pressure.”  Yesterday I paused and saw Dr. Furhman and his eat for health plan, so I watched and became very upset.

I am all for natural and healthy diets, have been for years.  I buy organic to decrease our pesticide load and try to help the earth; we have always eaten a healthy diet with less and less meat as we’ve grown older, and heck I became a vegan 2 years ago to lower my ‘high’ normal cholesterol and lipid levels and it worked.  Since chemo is over I am back to vegetarian and will work my way back to vegan once the surgeries are over.

What I find overwhelming with Dr. Oz is the quantity of information constantly thrown at you when you watch.  Were we to implement every single suggestion popping up on his daily show can you imagine what we would be doing? Eating a panopoly of foods to– decrease stress, stop a headache, ease a cough, decrease blood pressure, prevent cancer, get better skin, sounder sleep, better mental acuity, live longer and more. Now was it the chickpeas for the cough or the headache or the sex drive??  Or popping supplements to increase energy, stop the aging, help your sex life, melt fat fast, fight fatigue and ease arthritis.  With all the exercise suggestions and demos we could probably do a different exercise routine every day for a month without repeating.

Dr. Oz is a great doctor and his show does a great service and after a while I have to say to myself…to much information.  We are all individuals and some of these things will work for us and some won’t, and some are extremely expensive.  My issue watching yesterday was when Dr. Furhman spoke about preventing breast cancer eating basically a vegan diet.  It made me very upset.

I sit watching this while battling breast cancer, and am a tad concerned when (I am sure due to the shortness of the piece) many other factors were completely left off the table.

The environment, toxic chemicals on food, genetics all play a role in breast cancer and I came away from the show feeling guilty.  Yes guilty — for not having followed a better diet all these years.  Maybe I could have prevented breast cancer.  I am sure this was not the message the show intended to portray having Dr. Furhman as a guest.  And I do believe and encourage others to eat a plant based diet, will return to being a full vegan once this is over, and also encourage folks to buy organic with all the faults and falicies surrounding it.

Guilt aside, I grew up close to a superfund clean up site in a city with breast cancer clusters.  One of our homes, which we lived in for 10 years, was built on land previously used for apple orchards (we never had a bug problem!) and there was a high tension wire in the front yard.  And I have been consuming food, water and air replete with pesticides, insecticides and all sorts of toxins for 60 years.  Four immediate family members have died of cancer, my Mom breast cancer.

I also did not notice any recommendation on the show for buying organic.  Buying conventionally grown vegetables expose you not only to GMOs, but harmful pesticides. This was probably not the best time to watch Dr. Oz~but hey, Furhman may get a book sale out of it so maybe their purpose was fulfilled…just kidding.

 

History Repeats

This was cookie weekend, a family tradition started 65 years ago when my parents were poor and needed an additional source of income.  Mom was a great baker and folks loved her cookies so she started baking and selling boxes for extra cash.  As things got better financially Mom kept baking cookies, but instead of selling them they became gifts at the holidays for my Dad’s clients.  It was well known at the annual Hotel/Motel show in New York City to stop by Berkowitz’s booth to get some of Raynor’s homemade cookies-to a small child growing up she was famous!

My Mom could do anything she was invincible, she could cook, bake, sew, paint, garden, work, do math, and live with my father, she was my hero. When my father told me she had breast cancer my world stopped.  My mother, best friend, confident, teacher, person who I could always make giggle, was 60 and sick, suddenly my life was out of control.  Control– we all try to control that which happens in our home lives our work lives, without control there is chaos.  How do we react when control is taken from us grasping to make sense out of the uncontrollable?  I stopped eating it was the only thing I could control.  I got very thin.

History repeats.

As cookie weekend unfolded I watched all the “kids” and looked at Miriam and how wonderful she looks captured me.  She is a beautiful person, smart, kind and generous and she looks terrific.  I felt a kind of deja vu, I’d been here before.  Yes, cookie weekend has been going on pretty much unabated for the last 40 or so years but there was something else.

My Mom and I were both diagnosed with cancer at sixty.  During this crisis I lost weight and now so has Miriam.  Coincidence or history repeating itself or is it one in the same?  I am not looking for some grand meaning in the coincidence, no irrevocable links of fate, bad karma, or premonition of what the future holds.  I was simply struck this weekend, surrounded by family and thousands of cookies,  I flashed back 30 years.  A similar cookie weekend, kids all around, my Mom recovering from cancer surgery, cookies everywhere and me 50 lbs. lighter and looking pretty good and feeling great.

I think I am jealous.  I want to be thin again, cancer free, looking great, feeling great. I also want the future for my daughter to be cancer free; I don’t want history to repeat.

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