The Tree of Cancer

Surviving breast cancer is hard enough. Then you get to figure out what to wear. What to wear you say?  Yes, cause everything hangs or pulls, or  looks sunk in.  Sexy eh?

Do I have reconstructive surgery?I said no. But now that I am trying to have some fashion in my life I am reconsidering!  I mean, my life has turned into a dressing fiasco!

Imagine if you are trying to look ‘put together.’  For so many months, I have looked like I have been run over by a train. No wonder the American Cancer Society has this program, Look Good Feel Great!  Well that program is alot about makeup and hair, learning to use wigs and scarves and such. If you had any doubts about that you look bad, its reinforced by an actual free class in “Please Fix Yourself Up”.

Well nobody said anything about how uneven your clothes will appear afterwards. I cannot for the life of me wear this prosthesis thing. I hate it.  Okay, I  know I should change my attitude about it. But how would you like to wear an eleven pound plastic blob hanging in front of you that makes you sweat like …like I don’t know what. Now the weather has changed and gotten warmer its worse.  And it shifts!  I was in the store the other day and I looked down, and oh my god the thing was working its way up my chest and out of my shirt!  This guy standing next to me at Safeway made eye contact with me.  His eyebrows went up in horror and disbelief.  I wanted to crawl in a HOLE!  Instead I just reached in and shoved it down.  oh well.

I have to tell you about my Aunt Nancy.  She succumbed to breast cancer last May 30.  She was a character and a wonderful person.  She had it off and on for 30 years.  But one summer hot day she was out in the garden and she was wearing this prosthesis thing (I didn’t know anything about cancer back then) and it fell out.  She picked it up and to my horror she threw it in the blackberry bushes. She had finished with it.  She never wore one again. I totally understand what she did now.

Another time I was taking clothes out of the dryer and it got stuck on the dryer door and as I stood up it ripped my shirt and bra and the ‘thing’ plopped out on the floor!!!  I have to take a picture of this so you guys can see it.  I bought it at Nordstrom and they supposedly fitted it.  Its to big, to perky and to heavy!  My original that is left is a low rider sort of flat thing now.  I always liked them before but all of a sudden everything has gone south.  I always wanted to go south…just not there.  However on the other hand, its convenient because it is so flat it doesn’t show much if I don’t wear the prosthesis and just go without.

I know alot of you cannot even understand this, and I am making light of it.  What else is a girl to do?  I guess explore plastic surgery.  But to do that, I will have to remove the other one so I get two that match.  There is no point in having one nice shaped one and the other hanging like a swinging pendulum.  Oh this is hard to decide but is there a decision really?  How am I to go back to work.  Well work is another story.  I now have nine other conditions besides the cancer.  When I look at it all I just want to go back to bed.  Dealing with the diabetes has been the most difficult.  At least it doesn’t eliminate body parts….but no, that is not true either. anyway that’s another life …I don’t want.  I take that back, the left arm not working is the worst of it. Its stuck to my chest wall some how.  PT can’t change that.  Another surgery might help.  Gee something to look forward to!

I hate  all this. I am so self conscious about it.  And yes I am grateful I am alive.  Today was a great day and I feel good but there is always something.  If one more person tells me I should be grateful, I might give them my prosthesis right there on the spot!

I started the tamoxifen and its definitely a delightful drug.  One should be living in Antarctica to take this medicine.  You would not need a heavy parka or hat.  It keeps you plenty warm.

Well never fear.  I have not lost my sense of humor.  Instead I am dragging out the sewing machine and seeing if I can make some camouflage outfits of some sort.  A very nice designer in New York city sent me 12 designs he created. They are very flexible.  All made for women with one breast, left or right gone it doesn’t matter.  So when you see me going down the road with ruffles all down one side only, you will know that I have been designed by one of the top NY designers in the world!!

I will be a fashionesta!!!!!!!!!!!!!!  I will take pictures and post them in a few days.

Good night.  Sweet dreams!  I have two boobs in all my dreams.

Bonnie

How can I help anyone else when i don’t even know how to help myself?

I haven’t felt like blogging. I haven’t felt like trying to cheer someone else up. I have just been having a pity party.

Well you ask, why are you doing that? I don’t know,,,I am depressed I know.  They say its normal.

I have always had high expectations of myself.  This arm not working right has pissed me off royal.  Then there is the infamous worry if I am or am not going to start taking the tamoxifen.  I thought I was,but the day came up and the bottle still sits on the counter.

This editor isn’t working right tonight either. Something keeps trying to get in the way of me posting!  Lately I have felt like quitting the blog. I love twitter and spend a good deal of time over there. I wonder how much traffic is coming over here.

I am frustrated because I don’t have the answers. The answers to anything about cancer treatment. Everything is so ambiguous and not specific! I am an analyst and project manager by trade and I like things specific. I like them neat and tidy. I like to know what my deliverables are, when they are due and how to do them.  I am angry over my lack of control over my measly little life.

And…my mother was just moved into hospice care. So on top of everything else with this breast cancer I get to deal with her actually dying.  and that my friend, is a long convuluted story about how I came to lose my mother two years ago to dementia and to an insane brother who is a control freak. It must run in the family.

Only I had all those years with her.  All the years I listened to her complain, about this and that.   All the while not understanding that she really had an underlying disease that she was trying to cover up.  Now I understand why she did that. She sure as heck didn’t want her kids knowning something was wrong because they might put her somewhere!!!  Which is exactly what happened.  Her worst nightmare came through.  And what is even worse, is the little trick life has played on her.  There is nothing wrong with her body except she keeps getting smaller and smaller.  Yesterday she turned 88.  She has quit eating.  I told her on the telephone she needed to eat. She said there food stinks.  She said if I would bring her car she would get out of here and never come back.  She wants to go home to Idaho, where she was when my brother moved her to Seattle area.  This is not home.

I have little I can do to help her or myself.  That might not be true.  I can help myself…one step at a time.

I planted tons and tons of flowers today and yesterday.  I want my home brightened up out on the deck and the back yard.  I don’t have much money but these small things bring me such joy.

I want to help, but I don’t know where to go.  I want to be a part of something but I don’t know where to go.  I don’t know who I am after having this cancer.  I know what I can do professionally.  Personally I am at a loss.

I think I am going a little nuts here.  I think oh no…its happened again: 

Oh no.

   Okay time to think of all the things we are grateful for!!  I have been having a pity party today so I need to change it all around!

I am grateful for my home.

I am grateful for my friends.  I am very grateful for my animals.

I am grateful for my health.  My cancer is gone. I am grateful grateful grateful and grateful again.

I am grateful for smart medical people who could help me.

I am grateful for alot of things.

I will try not to think about all the other things.  I know that tomorrow the sun will come up again and my feelings will have disipated.  That’s the thing about feelings …you can’t trust em and if you wait long enough they will change.

So hurry up and change. I am looking forward to being happy.  Happiness is a choice.

I cannot change some things but I can change others.  Live and live again I hope.  I am grateful. 

Hold on!

http://www.oncologynurseadvisor.com/one-quarter-of-patients-do-not-complete-recommended-breast-cancer-treatment/article/290919/

Interesting article on non compliance with estrogen therapy after breast cancer diagnosis in early stage breast cancer. I should add here that the standard treatment is one pill daily for FIVE years!

Joint pain is ranked as the number one reason why women quit adjuvant (I can’t even spell it) therapy.  Thats the pill form of chemo that they give to women that are usually positive for both Estrogen and Progesterone of which, I am both.  They say its the easiest cancer to cure in women if caught early enough.  It is also likely to reoccur, and the article says the main reason cancer patients continue on with treatment is that they feel the cancer is going to come back.  Ug! I don’t want to think this way.

If any of you have read my blog from the beginning, you have read about my experience with Arimidex….which was not pleasant.  It was filled with many side effects for me.  I quit the therapy after nine weeks.  If it can work for you, it probably gives you some good insurance if you want to risk quality of life for 8 percent continued life not coming back cancer.  No body wants this stuff back.

I guess I am not the only one that quit.  It looks like 25 percent of early stage cancer patients quit the therapy.  Its a percentages game.  The doctor said I had about a 75 percent chance of not getting it again without any additional treatment.  Add the Arimidex to that and my chances increased 8 percent or so.  That would be an 82 percent chance or so that I will not get a reoccurrence.  I said, well I had the mastectomy so the cancer is physically gone….so how could I get a reocurrence?  Well it goes somewhere else in your body.  Well now I say, how can it do that when its gone.  WELL..it is never really gone I guess.  It grows in your fat cells. Which we all have plenty of.

It is very important to lose weight, if you are over weight and get breast cancer.  Losing all the extra weight, eliminating every fat cell that you can.  A lifelong commitment.  What a motivator. What an option.

Its like you have to learn biology to stay alive.  Chances, percentages, months, years…blah blah.  After awhile you just don’t want to hear about it. You want to recover and get on with your life.  Even if you had early stage cancer no one will let you get on with your life because they are all busy worrying it is going to come back.

There comes a time when the nonsense has to stop…when the insanity needs to be quiet.

Is it no wonder cancer patients turn to yoga, meditation and other means of tuning out the world because the insanity is always lurking like the grim reaper behind the front door.

As for me,  I started tamoxifen this week.  We will see how that goes.  If I don’t have to much problem, I will take it.  At least this drug prevents osteoporosis instead of causing it like ‘other’ meds. But its known to cause blood clots.  I have already had one surgery since September to remove blood clots.  Gee, what are the odds??

The whole pink thing is a nightmare.  I seen this picture of Jack Nicholson’s face on a tee shirt from when he stared in The Shining movie. I told people I needed that shirt.  That is what I think cancer looks like…its hidden in the maze somewhere and its out to get you.

Beware of spooks!

Have you or someone you know struggled with dealing with care during cancer treatment?  Did you know, that breast cancer has the most amount of resources available to you, especially in Puget Sound?  It’s finding them that is the trick!

I didn’t know that.  But I found out through CancerLife Line.  One of the most difficult things going through cancer as a single person has been for me was being able to focus and find help.  Every oncologist’s office is associated with a social worker, and that person can be of great help to wade through the enormous amount of data and can refer you to sources.

There are several small boutiques in Seattle that sell garmets to deal with after surgery.  Most of us don’t know that these things exist or that our insurance covers them!!  What amazed me was even my bras are covered by insurance each year!  And they get custom made at Nordstroms or any of the little boutique shops.  The good thing about the boutique shops is that they are very personalized, and follow up with you to make sure you are happy with your purchases.

Mistake number one for me:  I bought the bras and prosthesis to soon after surgery.  You really need to wait until your surgical incision is healed on the inside.  I really felt my frozen shoulder has been directly related to this and it makes me so mad!  But where is my person to advise me?  Sigh…this is something I am going to work for change.  Patients need to have someone there.  If most places do it now, well I fell through the cracks on that one.

I feel pretty isolated when it comes to followup care.  I have pretty much struggled through this on my own.  With the help of the internet I have found things.  Going back to the primary care physician has helped.  He is a little more generic and covers lots of things.  The whole thing is a blur anyway, and I feel like I just emerged out of a long long tunnel.  So perhaps if anyone said anything to me anyway….I might not have heard.

But now, I found Cancer lifeline and all their classes throughout Puget Sound.  Their classes are free, but you do need to sign up for them ahead of time.  Examples are nutrition classes, yoga for survivors, and they provide counselors if you just want to talk.

WWW.Cancerlifeline.org is their web site.  You can also call them at 206 297-2100.

There are many classes on meditation, stress management and eating right for cancer.  Definitely a program worth looking into and it is the right price…free!

Going back to college while in breast cancer recovery?  People look at me as if I am nuts!  Well, I have always drifted a little to the ‘odd’ side in my years.   That’s ok. I am comfortable with that.

It was my wish to explore my world right from the beginning.  From the third grade on in elementary school, I knew I wanted to be a writer.  It was not encouraged.  I remember the wrinkled up look in my father’s eyes.  A man with a sixth grade education yet managed to work his way up in the Railroad system for over 40 years before retiring at 59.  He could not even envision making a living with writing.  What for? What do you have to say?

I have a lot to say!

Education was not valued in my immediate family.  I however watched as I grew up, how my cousins went on to college and trade school.  Our little leg of the family didn’t seem to value growth through education.  Yet I now believe education is the only way out of many things: poverty, ignorance, and gives so much to a person’s life.  That’s why I am pursuing this advanced degree in IT.  Besides its fun! I love learning. It opens doors.

As time went on I realized my mother had dreams.  She was cleaning people’s houses and ironing clothes both of which I was entirely ashamed of when I was a kid.  When she came up with the plan to become a nurse’s aid…unsupported by my father although he was very much in to her making money and providing a second income.

I remember she didn’t think she could do it…get her certification.  I encouraged her. Yes, you could I told her. You are not dead yet, you can do anything until then.  She went on to finish, and I was very proud of that fact.  It changed her.  It changed our lives.  She finally felt worthy of something.  That would all come to a crashing end laced with alcohol and divorce shortly after I left home to get married.    She would however, rise from the ashes later in her life when the second husband died and she was left alone to fend for herself.

My mother started a hot dog stand by the lake, in the city park.  She made good money for years doing that.  Money she never paid taxes on, and money that allowed her to buy some extras for herself. Yet she never seemed to have enough.  She was constantly borrowing from me and whomever would give her money (this I wasn’t aware of until years later).  I was making good money and I was glad to do it.  I took her to Florida, and we went to Alaska on very nice vacations.  We hiked in the mountains above Ancourage and wandered the beaches in Florida both on the east coasts and on the Mexican west side.  I think she hated taking money from me and didn’t understand why I would do it for her.    She said to me once why are you doing this for me? I never did anything for you.  It wasn’t about that, she was my mother.

But what I learned…..the tassel is worth the hassle!  Education is opening doors, peering inside and tasting! Tasting life.  An education is growing and learning, changing and adapting.  It’s freedom!

Hello Everyone

Sorry I didn’t post over the weekend!  Was studying for a big test this morning at 930.  Last week when I had the eye scare…everything turned out to be ‘just take your drops and come in May 24′.  The specialist was not freaked out at all.  Over reaction on the other doctor’s part.

First of all….they need to remember to ‘first do no harm’.  Read the rest of my chart.  Read what I have been going through.  Don’t just storm in and start shouting.  I don’t need it.  Define the problem.  Upsetting me and telling me “this is serious business…and you need emergency surgery right now”.  He really upset me. He is fired…I will never go back to that doctor ever ever ever.

But just see what craziness it can cause if a doctor jumps to conclusions.  I have to remember they are only human too.  They make mistakes, have emotional reactions and alarm their patients. Not that it wasn’t or couldn’t have been serious but thankfully it had an easy fix.  Once I started using the drops my diabetes numbers dropped in half!!!

Warning to me I guess.  Keep track of all systems and how they are doing.  Analyze when something is off and check that I am doing the things I am suppose to be doing.  My numbers dropped from 249 to 168 overnight.  More acceptable but still a little to high. I will work on that.  Normal ranges are 80-100 in the morning but I haven’t been there in 10 years.  Usually 126 is where I want to be in the morning and 160 or less an hour after eating.  No insulin for me yet but I do have to watch it.  Stress also makes it higher so if you have a doctor that doesn’t know your body and what can be expected, you might get an over reaction.

Its always best to know your own body.  Know what crops up that is not normal for you.  Its your body’s way of letting you know something is getting off track.  I examine what I have been eating, did I exercise the day before or is something bothering me that I can control?  We can often examine our reaction to something and take care of it accordingly.  Just looking at my last post I could tell my blood sugars were off.  I get half crazy and start swearing and panic.  Its a sure sign.  Because that’s not normal.

What I did decide though is to go to a specialist – endocrinologist. Its time and probably has been for years.  If you think about it, cancer is part of that whole system.  Sugar feeds cancer.  Oxygen can help eliminate the possibility of getting cancer so exercise!!!

I think one of the problems for me has always been finding some exercise I like to do and making it a part of my life.  When I was younger I played basketball.  I liked baseball.  I lifted weights for awhile and that was fun.  I could do that again. It would help strengthen my arm.  But most of all…I loved to swim!

I grew up around a big beautiful lake in Northern Idaho.  Several lakes were in that area.  I went fishing. I went skating in the winter.  My dad had a boat when I was a kid and I loved boating!  It was peaceful near or on the water and I loved it.  I still love being in the water. I have no fear of water whatsoever but I also have a great respect for it.  Its all a matter of finding some balance in life I guess.

Walking is a great exercise and I started slowly.  Some times I fade off and don’t bother just like writing my blog.  But every time I do it….I love it.  Everytime I dig down into my soul to figure out what is going on…I find something new…new about me!

Getting discouraged, frightened and angry is all a part of cancer but you cannot let it keep you there.  It wins if you do.  So when you fall, wipe your hands off and get back up.  Never stay down. Never let the bastard get you down and keep you there.  Never!

Victory is in rising.

The Phoenix

Cancer and other information is everywhere and my biggest problem, probably as well as yours, is which source do we believe?  Or do we believe them all?  I think we know better than that.

When I started my health journey, I knew very little about cancer, and less about breast cancer even though my x’s Aunt and I were close and she had breast cancer for 30 years.  Imagine having any disease that long, with major surgeries, chemo, and on going lymphedema problems and blood clots.  Now it sounds terrible but I have to tell you, she lived a good life, enjoyed many grandchildren and a few great grandchildren and she rarely complained.

But sometimes not complaining, cheats you out of your own reality.  I was a caregiver for her four months last year.  I had no idea I would be diagnosed within ninety days of her passing.

I can not say that cancer treatment has been horrible in the whole scheme of things.  Although some days I whine about it.  I am grateful to be alive.  Now each week is better.  I have met so many wonderful people.  And like in yesterdays post, the gift has been of awareness and ability to see that I can create a better tomorrow.  I can restart again.  I can find meaningful relationships and let the toxic ones go.  I can find a job I truly want to do.  I can achieve good health and continued ongoing strength and health.

My one problem is spending to much time researching on the internet and not enough time living.  So today, I am going to change that.  I already disconnected the television.  Wow, for three days I had total withdrawal.  I am going to go low tech for awhile.  I still have to do my homework on the internet but I can subsidize some of that with working out of the text book.

We constantly get bombarded by to much data.  And then we wonder why our senses are overloaded, our emotions are swinging from one end to the other, and our bodies are producing cortisol in reaction to that information.  Cortisol is not good in the long term.  Maybe because we are of the older generation now, I am more aware of minimizing the impact from outside sources.  For example, on Twitter, someone posted a picture of that poor man in the wheel chair in Boston, with a bone extending from his knew to basically where once was a foot and ankle…it had nothing on it.  I was grossed out and flamed the guy on Twitter.

Do we need this kind of ‘color’ in our lives?  Not in surprise anyway.  So people, please be kind to one another.  Limit the amount of attack and shock on people.

Why can’t we just love one another?  Such violence in a world so now connected instantaneously.  People want to be heard.

So, in closing, breast cancer survivors…be kind, limit yourself to exposure to over reactive situations and remember to breathe, meditate and be kind to yourself.  We can all help our world, by starting with ourselves.

Take care of you!  Whatever road you travel.

Today: The site of New York City’s Ground Zero

I have been thinking about rebuilding the past few days. With everything that happened in Boston yesterday, more and more it has been on my mind about enjoying this day with those I love.

Even devastating health issues are opportunities for growth. Debilitating health issues often don’t have the alarming wake-up call that critical health issues do. People will exist for years with allergies, or fatigue, or insomnia and just try to get by. Type 2 diabetes is slow to show its side effects and thus people change but maybe not!  But when catastrophe hits, and you are diagnosed with something potentially fatal like heart disease, or cancer, then you suddenly make dramatic changes in your habits and lifestyle. When you’ve recovered, if you do, you find yourself feeling better and more energetic than ever. Not only do you feel great, you have a new found appreciation for life, and you begin to live life more fully.  (quote from a magazine article I read, but I can’t find where it was).

 What you find when people have faced a major catastrophe in their lives, is that the new life they build begins with a stronger foundation. We are rebuilding the tower, but we are smart enough now to put the solid stones at the base.  We no longer want to live in a house built on sand.

When we are looking for that new job, we focus on the type of work that we really want to do. When we find new love, we know it because it feels right. When we begin new health habits, we begin with an appreciation for our body and it’s desire for good, nourishing food.  I have been eating organic for six months, and I feel inside so much better.  I literally watched my surgical incision transform itself over the last five months.  It was long wide, and deep and it was ugly from the sternum all the way around under my arm.  I literally watched my body repair itself day by day.  I know this is attributed to proper nutrition and healing.  Breathing is what I have noticed most, has changed.  I am so aware of in and out and in.  Oh and the sun on my face, little that we have had has been so deeply wonderful…warm….and healing.

Building a new life on a solid foundation is the first step toward taking your life to places you never thought you’d go.

So, the next time you feel that your life has ended because something terrible has happened. Next time you feel like life is crashing down on you – look for the opportunity. It’s there.

You are no longer tied down to WHAT WAS.

Because buried in that mess is the opportunity to create WHAT WILL BE.

The time, of course, is now.

   http://treeofcancer.com/2013/04/12/cancer-friends-the-new-housewives-of-chemotherapy/hwvideo/

You will have to search on the New Housewives of Chemotherapy because its two young gals going through Chemo together, and the happy funny side that has left them with a nurse telling them to not make so much noise…..they were laughing!

A trip to the chemo ward is like taking a look down a dark grim path. I hope I never have to go there although I don’t know what the difference is between having the IV and taking the pill form.  Except I am thankful no port, and not all that vomiting.  Did I say, NOT all that vomiting? hmm  Notice I did not say none!

Well the insurance night mare continues.  I have been looking for cheaper plans, but I am so thankful for the good coverage I have even if it is very expensive.  It comes first, before eating and the rent!  My bills are awfully expensive.  Later this month, comes the big checkup.  I never knew a doctors appointment could be well over 600 dollars just for an office call.  Try getting cancer. It is not cheap.

I would much rather be buying new shoes.  Boy, who gets new shoes with cancer? Who can wear shoes.  Your feet swell and not at night!

This week a friends girlfriend died in a kayaking outing on the Green River.  I don’t think anything good ever came of anything when I think of the Green River.  That’s where wonderful Gary Ridgeway did his killings for years.  That’s where she died. I think that whole area is cursed.  I have been in such a depression thinking about the whole thing, and why do bad things happen to good people.  I don’t know.

I am feeling like I want to go back to work. I am going to school but I need to have something to do, out and away from the house.  Away from my mind and the internet which fills my head with to many questions, and not enough definitive answers.  It fills my head with doubt.

I am off to a friends birthday party.  I was to broke to buy her anything and she said to me, I am just thankful to have you here with me.  God, I cried all the way over there.  Sometimes just our presence is enough.  Thank God for friends like her.

It was an unexpected gift at an unexpected time….the best gift ever…the gift of love and friendship.  Can’t buy that!  I am off to have pizza and birthday cake.  Happy Birthday Pat!

Bonnie