Monday, February 17, 2014

Spring Flowers

Lots of skunks around this time of the year.   
They are busy making spring flowers. 

Survivor Shootout

I was a contestant in the Knoxville Ice Bears breast cancer "Survivors Shootout" at the "Pink in the Rink" game Saturday night.  I was little embarrassed.  Not that I didn't win.  But that I even went to the ice.

Chris said "just go do it.  But don't fall...."  He does know just how graceful I am!!

Thank you Knoxville Ice Bears for continuous support of breast cancer awareness.  Your community involvement is invaluable to so many organizations in East Tennessee.

Was also Nashville Predators
night.  Got a hug and kiss from
Gnash!  But no pic. :(

Ended up being a lot of
people in attendance I knew.
Like Mayor Hawkins and
his beautiful April.

My good friend Patty
was there with her
Girl Scout troop.

Questions I Was Asked

One of the hardest jobs I had as a cancer patient was keeping everyone around me calm and help them keep their sanity.  The feeling was that I needed to be the strong one, the informed one.  I don’t know if that is because of my personality trait of “people pleaser” or if all those diagnosed with cancer feel the same obligation.  I’m not sure if those around me would admit they needed me to be that way or not.  But I am fairly certain, deep down, they did.

People who know cancer patients ask questions of the person, the same questions.  Some great. Some not so great.  And I probably always had the same answers.  Usually the answer was, and most of the time I felt, fine.

Here are some questions which tend to be asked:

The most popular question seemed to be what stage of cancer.  Followed by what is your prognosis.  Hmmm…..I, personally, was uncomfortable with those two words. Prognosis? Stage?  I’m not sure, especially wasn't at the time, what those words really mean.  But they stirred a lot of emotion.  Seems that with the stage cancer as long as you weren't a stage three or four some thought you were fine.  Nothing to worry about in some minds. Prognosis seemed to go with Stage.  With my cancer being HER2 positive the stage cancer was trumped.  HER2 positive was the mother load of importance. Survival importance.  So in my thinking I never ask someone with what stage or what is the prognosis.  Or I try to remember to never to do so.  It’s not always about that.  It’s more about the type in many breast cancer diagnosis. 

The common response to the stage answer I gave was “you’ll be fine.”  “You’ll be okay.” Many said things like, “the doctor found my (aunt’s, uncle’s, grandfather’s, grandmother’s, father’s, mother’s, friend’s, etc), cancer too late. But you’re lucky.  You’re cancer is different.”   I’d think…. It is?  How……..???  

“Aren’t you too young?” I was 38 and a young cancer patient. Yes.  What is the acceptable age for breast cancer?  I’m not sure...... 

With the young comment/question often came a sort of rapid-fire questions: Did birth control pills cause it?  Is it genetic? Do you eat a lot of chicken?  Did you ever smoke?  A barrage of questions that seemed to blame everything except cancer. Those type of questions almost seemed like they were blaming me for the cancer.  Now, I know no one does.  Blame me that is.  It’s just that cancer is a scary word. Placing blame eases the mind.  Maybe they won’t “catch” it if blame can be found in something they don’t do.

“You’re so young. You know those under 40 risk is high for cancer to come back.”  Um…. (my favorite word), yes, I had people say this to me! More than once.  And um….(my favorite word again), I know all the risks and statistics and so on.  My doctor is such an amazing source of knowledge.  And I’m lucky he is a doctor who stays educated on the latest up and coming research.  Attitude is of utmost importance when dealing with The Big C.  This tidbit of information would crack most people’s armor. Please don’t think you are warning someone of something that may never happen, and for goodness sake, can’t be controlled.

“You know, you really should join a young survivor’s support group.”  Heard this many, many times.  Received many, many mailings for groups in Knoxville.  I believe those places finally got the hint from my non-attendance that I wasn't interested.  Now, I was a social worker for many years.  I facilitated many of a support group.  Many.  And they are great and important and helpful and wonderful and a must for some. But, um (sorry for that word again..), not for me. Not during treatment.  I feel I had a GREAT attitude.  A GREAT outlook.  I feared attending a support group would hinder that.  I was able to hold myself together for myself.  I knew with my personality I’d go to a group, hear their stories, the social worker come out in me, and then I’d be worn out trying to care for myself and the others in the weekly meetings.  So it’s great to mention a group or finding a mentor to someone.  But they know if they need it.  Please don’t hound.  

I’m finally at a point I might like to try some sort of survivor networking.  I applied for "Casting for Recovery” weekend in East Tennessee.  I wasn't selected but will try again next year.

“Do you take vitamins?”  “My (such n such) took a (so n so) herb.  I swear it cured her cancer.” Okay.  I’m a believer in vitamins, etc.  However, please do not suggest extra things to someone in chemo.  Chemotherapy is extremely, extremely taxing on the liver, along with pretty much your whole body from killing cells to killing hair.   Not too mention all the other prescriptions being taken which your body must filter.  Your liver is working so hard to process and extra care needs to be taken, with doctor’s permission, before adding extra drugs, herbs, supplements, vitamins, etc.  

For example: Blood work is performed each time before a treatment.  I believe it was my third treatment my liver enzymes were so off the chart I could not have that week’s treatment. I had to skip chemo for a week.  That’s scary. You don’t want to miss any treatments!!!  You must keep them going for them to work properly.  Dr. Charles told me that if my liver enzymes did not improve the next week I’d still have to have the chemo.  And go from there. You just can’t miss!! Trying to heal yourself while taking chemo to do the same can really harm you.  Please be careful in suggestions to cancer patients.  They may trust you and try what you say without telling their doctor. Surviving cancer to deal with permanent liver damage? Not a good trade off.

Ever heard of “Survivor’s Guilt”?  Well, it’s real. It’s something most survivors go through at some point.  A feeling of guilt that you survived when so many you know have not.  Be aware of the potential for a cancer patient to have at some point at some level an amount of survivor’s guilt. This is made more keen when people talk to you about who they have lost to cancer.  Guilt….I’m alive.  The person they loved is not…..  I’m not saying to not share your loss.  I enjoyed hearing experiences of others.  But the way life stories are told can be and are very profound to all. Especially someone who is battling or who has survived cancer.  Just be aware of what survivor's guilt is and the person you love battling disease may at times have it.

Please never say to a breast cancer patient, “You’re lucky.  At least it’s just breast cancer and not some other kind.  Breast cancer is very treatable.”  Hmmmm…..ok.  Not only does the cancer patient have survivor guilt but now they have breast cancer guilt…. ALL cancers are bad, are dangerous, are scary, are painful, and can kill.  

"You're lucky to a such a great support network. Many don't have that."  Thanks.  I know that. Well aware of it from my social worker days and seeing the struggles of so many with little support.  That is a guilt loaded statement or a compliment?  Can be either depending on it's verbal delivery.  I've taken it as condescending from some who say it.  Others, more than the other, say it in a way they are genuinely happy about support systems.  Should I feel guilty for having supportive people in my life?  I know I'm thankful!!  In ways it doesn't matter.  While dealing with cancer there is an aloneness ache and loniless you feel no matter how many surround you.  It's not that the statement in itself is bad.  People should think of their motivation for making it before they do.  (Fact.  I've told many people this same statement for many situations: illness, death, divorce, loss of a job, etc.)

“Are you ok?”  When you really think about that question is anyone okay that has cancer?  No, not really.  Cancer is never far from the person’s mind that has it.  I’m guilty.  I ask this question without thinking to people in many situations. I truly just want them to be okay.

“Did you find it with a mammogram or find it yourself.”  I was 38 when diagnosed and had mammograms since I was 25 due to family history.  After five lumps removed since age 25 I had grown numb to finding lumps.  The mammogram at 37 didn't show anything.  A month or two later I had a lump that was around 3 inches and growing.  I waited to have it checked till my next mammogram.  Which of course showed the lump this time.  There are so many different research studies on the helpfulness of mammograms and false hope/security they provide.  I honestly still have mixed emotions on them and age to start.  But ladies!  Get your mammogram!  Men, make sure the women in your lives get their yearly mammogram!

So many questions are asked.  This is where you have to be informed to help your friends and family.  The cancer patient almost has to be a researcher, teacher, doctor, scientist, in order to answer some which are asked:  “What kind of cancer?” (There are many types of breast cancer).  “Where is your cancer?”  “Is it in your lymph nodes?”  “Do you have to have chemotherapy?”  “What kind?”  “How many?” "What about radiation?"  "Are you going to have to take Tamoxifen? " etc.  Once again, I’m guilty of asking these questions.  Maybe more so since I've been through it and often am curious.  Many questions are thrown at you from a person trying to help.  They have no idea what your answers really mean.  “I’m HER2 positive, estrogen and progesterone positive.  I hit the trifecta!”  People don’t understand all that. Even though they have asked.  Maybe those questions about prognosis, type, stage, treatment type, are all obligatory questions.  People hear other people ask cancer patients those questions through the years and they just continue.

“You’re lucky.  You get new boobs.”  Oh….if it were that easy.  At first I comforted myself with this statement.  It was one you try to believe for a while.  Until after the mastectomy when you actually see the scars and realize those can never, ever be covered with plastic surgery.  And you start to research the types of plastic surgery. There are several ways to have reconstruction. None are one step.  None are without risks. None will require less than one procedure.  None are easy.  All still have the final, same result….your breasts are gone.  

“It doesn't matter what you look like.  No one sees you.”  I believed this for a while.  It’s another statement you try to do so with.  But when you find you don’t look in the mirror without a towel over you, well, you don’t believe that anymore.  

Something that happens sometimes which is not questions but is rather people avoiding you in public or ignore a cancer patient. Probably out of fear of what to say and what not too.  It’s okay to not know what to say!  It’s okay to just say, “I don’t know what to say”.  Several situations I was in come to mind on this one.  The people I’m remembering were extremely nice and we had some great talks.  Nothing was brought up about my cancer.  And I didn't broach the subject.  I was afraid to since they did not.  Perhaps they thought I’d bring it up if I wanted to talk about it. Perhaps they were terrified I would bring it up because they did not know how to act or what to say.  

I also remember being at a movie or out to eat in Knoxville and occasionally seeing people wearing their pink.  Sometimes they avoided eye contact when they saw my scarf and flatness. There was a funny feeling in my chest after those types of nights on the long drive home.  I don’t like pink very much now.  (But I make Chris wear it!)

I also remember being out to eat at a local restaurant and briefly saying “hi” to some people we know.  They were leaving.  When Chris and I were going to pay our check it was paid.  Kindness.  Thoughtfulness.  I had a funny feeling in my chest that night too as we drove home.  But quite different from the previous…. 

Should you find yourself in a similar situation with a cancer patient or survivor and don’t know how to act— maybe just a quick acknowledgment of the cancer would be quite enough. “I heard you've been sick” or “I heard you have cancer.”  “I’m here if you need anything.”  That is enough.  I left a few conversations with friends and felt a little hurt because they acted as if nothing was wrong with me when obviously there was.  And I’m not one to get my feelings hurt.  In fact, guilt again!  Guilt of feeling hurt and taking something personal that I should not.   But it bothered me to the point of thinking they did not care enough to ask me how I was.  

When I see or know a cancer patient I do all these things.  Have done.  I try not to. Everyone is different.  Some love the questions and love talking about everything.  Others want to be left alone about it.  Some fall in the middle.  It’s so hard to know….  

Now, here are some things that I think are good to do for those you love suffering from breast cancer.  Don’t ask “What can I do for you?” You’ll most probably get a “nothing”.  (But maybe not because it depends on the person.) When you’re on chemotherapy your thinking is not really clear.  There are so many drugs in your body and that includes the brain.  Things can be quite fuzzy.  Concentrating is hard. Planning things is hard.  It's called "chemo brain".  So asking certain types of questions may overwhelm someone taking treatment, including radiation.  They may not know what they need….for real.  This cancer thing is a “learn as you go” disease. 

Instead of asking what can I do, maybe suggest something like “Why don't you start a list of things during the day you think you may need help with.  Such as doing  laundry, stamps from post office, medication picked up from pharmacy, washing your hair, a Frosty from Wendy's,  etc.  Keep a list of people and their phone number who've offered to assist with stuff.   When you think of something that someone could help with call them”.  Have a nice journal type notebook and a pen to give her for this purpose.  It’s also good to pose that question to the caretaker-have them call when they see a need.  

Caretakers need help to!  Many are overwhelmed with caring for the sick person, house work, kids, pets, working, cooking, Not to mention being overwhelmed with emotions of fear of what is happening and fear of the unknown of an uncertain future.

One thing I believe people can do for cancer patients that is a definite great thing:  Cards, gifts, surprises.  I had a few friends that surprised me with things now and then.  One brought me the best pair of PJ’s I’d ever had. And I used the heck outta them.  I had not thought about not being able to lift my arms over my head after the mastectomy.  So I did not have any zip up or button up PJs till the gift.  

Friends made me a basket of trinkets: toothbrush, chocolate, box of microwave popcorn, crossword puzzle book, gum, Propel mix, devotional book.  

My niece sent me the funniest cancer card in the mail.  I've lost it and really regret that.  When I pulled it out of the mailbox and read it I laughed. It was funny and cute but I also cried because it was from my niece.  She had taken the time to go pick a special card just for me. That meant a lot.  

So instead of asking a bunch of questions that are hard to understand for the cancer patient and to which the answer given back to you is hard to understand, do something.  And, sometimes, instinct will just take over.  You’ll know what to do and say.  Relax.  

Without asking here are some ideas for women with breast cancer:

She is your friend.  You should know at least a little about her.  What type of books does she like?  Buy her some.  I received several books, however, only a couple that I actually read. Think of the books she would want to read instead of you think she needs.  Self help for breast cancer, devotionals?  She may not like those.  Feel your friend or family member out.  It shouldn't be too hard to find just the right book series she likes.  A friend I don’t see often sent a series all the teachers were reading in the schools.  Very thoughtful.  I wasn't sure I’d like the kind of book she brought but tried and ended up reading 4 or 5 of the series.

Movies or TV shows.  A lot time is spent resting after a treatment.  Several friends could go in and buy a DVD set of her favorite TV series.  Or her favorite movie-you know, like the kind you can watch over and over and over.  (“Gladiator”, “Pitch Perfect”, “You’ve Got Mail” and “The Walking Dead” would be my personal choices.)

Buy her some nice PJs that button.  And nice button up shirt or two for work.  It’s hard to raise your arms after a mastectomy and many aren’t prepared for that.  A friend gave me a hand-me down sweater that I still wear today, four years later.

Offer to go grocery shopping for the family. Offer to mow their yard.  Offer to drive her to an appointment.  (There are many.)  Or find out from the caretaker when she is feeling good, call and surprise her with a night out to a movie or dinner.  Or bring her favorite food and movie to watch at her house.  Some friends and family did this for me.  And Chris made me go.  Go, go, go out to eat and to the movies with him.  It was hard at the time emotionally to go in public with a scarf and bloating but I’m so glad he did.

Remind other people who know her to do things like send cards.  Give out her mailing address for that purpose.  It’s not that people are callous and need a reminder.  It’s just easy to not “remember” when someone is sick or having a tough time.  Or assume someone else has taken care of it.  We are so busy in our lives.  It’s not a bad thing to remind people to help others.  Not in my thinking.  

Occasionally call her on your lunch break to see if there is anything you can do for her during the day.  Or bring her after work.  Encourage others to do the same.  No or nothing might change to a yes or something when asked a few days from now.  Don't give up.

Cook dinner for her and her family.  Call her husband or caretaker to plan the day.  Then surprise her.  Depending on how she is feeling it may be best to just drop the meal off instead of staying to eat.  She may not feel like eating at that moment.  However, she may invite you to do so.  Be ready for either.

If it’s your friend or family member you should know what types of food she likes or can find out easily.  Ask the husband or caretaker of any special dietary demands first.

For Example:

Home cooked meal-meat and veggies, pasta, soups, etc.

Drop off a pizza

When you go out to eat get a to-go order of something she likes.  A good friend loves the Olive Garden and we've been many times together.   Once a few days after a treatment she called and said she was at The Olive Garden and to expect dinner in a few hours.  Yum!  Surprises are the greatest.  (I'm a sucker for little surprises anyway.  Except surprises where I'm expected to be the center of attention.)

Fruit basket

Basket of goodies-chocolate bars, cookies, bubble gum, popcorn, etc

Drop off a box of Fiber One bars for breakfast or snacks.  They are high in fiber.  Fiber is good for the guts, especially if someone is experiencing problems from medication and being inactive. And they taste great!

Plastic spoons, forks and knives!!!  Chemo gives a metallic taste to you mouth.  Plastic silverware helps fight that a bit.

Soooooo, cancer is hard.  It's hard on the patient, and their friends and family.  And it's hard on you.  You who are trying so very hard to not say the wrong things.  To ask the right questions.   To do the right things.

RELAX.....listen to her.  You'll know what to ask. Her verbal and nonverbal cues will keep you instinctively going forward with what you are doing or saying and if she is enjoying teaching you about her cancer or if she's tired and just wants that Frosty from Wendy's.