Looking for a better solution to Breast Cancer

Thank you, all for encouraging me to blog again.  I told you I was back and then I wasn’t.  Mentally I was struggling, not coping well with the memory of chemo, the surgery, the radiation … it was difficult to remember all that and write about it.  Cancer seemed to be on all sides.  It had taken over my life.

I struggle to find the new normal and am realizing when I find it, I will struggle to accept it.  Normal, probably isn’t coming back, acceptance is on the frontier.

Life is good, truly it is!

I have had my last check up at the BC Cancer Agency and I am still doing well.  I was experiencing a lot of bone, muscle and joint pain so Dr. D has changed my medication and  it seems to be subsiding.  I hope that continues.  They told me to expect to sleep another 6 months.  I am also part of a study so I will have 6 months check ups and lab work.  So it was my last check up … if I wasn’t part of the study … but I am … so … etc. etc.

Interesting at the Lab that morning.  First of all I didn’t bump into C.  C. passed away Sept 9/12 of Ovarian Cancer.  I will miss you C.

There was nobody there, that didn’t last long.  Two other women and partners filed in behind me.  The one lady, an east indian lady, wearing a scarf draped over her head wanted to talk to me.  It took me some time to understand her … she wanted to know why I still had my hair.  Hair … it’s always about the hair.  I told her that I had lost my hair and now it was back; I have had 3 hair cuts, although still waiting for brows and lashes.  She was so sad and pulled back her scarf to expose her mostly bald head.  The other lady, much older, had on a cute blond wig with a tiny braid on the side.  She was also interested in my hair.  She had recently shaved her head because of the hair loss.  There we were 3 women, stage 3 lung cancer, stage 3 ovarian cancer and stage 3 breast cancer … all talking about hair!  Too funny!

Later, at the oncology offices the east indian lady found me, she couldn’t help herself.  “Do you have any breasts?” she asked me.  “No, I don’t” I told her.  She looked horrified.  She knew at Stage 3 there would have been surgery, she had had surgery but not her breasts, not something visible, not something so defining.  “It was in my nodes” I offered, thinking that would help, it didn’t and it doesn’t.  We need a better solution to Breast Cancer … really we do!  I would like see a new and better solution to Breast Cancer in the future and I would like to be a part of it.

Rochelle is “Running for the Cure” in Vancouver on Sunday the 30.  I think the money raised there mostly goes to the employment of the nurses and technicians at the Cancer Agencies but I have done no research on this.

If you know of any organization committed to solving Breast Cancer, let me know … I am going to be checking things out on that frontier.

I believe we can solve this puzzle!

I am back …

It’s been a month since I have posted, a month of complete exhaustion.  The Cancer Clinic advised me that I would sleep and rest for a least 6 months and you know me, if it takes 6 months I’ll do it in 3.  That is always my attitude, when will I learn?  These people know what they are talking about!  Seriously!  I will probably NOT do it in 3 months … but after the year I have had, what is another 3 months?

A friend of mine from Alberta was here in April.  I think she wondered if I was going to “make it” when she left.  I am going to “make it!”

Radiation is a lot harder than they tell you, actually the whole journey is a lot harder than you realize.  Sad too.  A lot to process.  A lot of shedding what is not important anymore!

April 20, 2012 was my last Oncology appointment with Dr. W.  I remember going into the Cancer Clinic, dropping off my Radiation Survey, picking up my Gingerbread Latte, and smiling at the couple next to me in the waiting room.  The woman smiled back and I became aware that they were watching me.  I commented that I had whipped cream (fats are not on the Breast Cancer list of foods) on my latte today because it was my last appointment, “Well, for the time being,” I said.  I asked her what type of cancer she had.  She was wearing a hat with a few wisps of hair around her face.  “I have Metastatic Breast Cancer, Stage 4” she said.  I’ll never forget her look.  “They have radiated my back, they are just keeping me comfortable, they have me on a chemo pill now but I can’t keep it down.”  My heart sank.  “When, how long ago were you first diagnosed.”  “3 years ago, stage 1” she said.  They seemed so in tune, in love and completely unphased by the future.  They knew what they were up against and yet their strength, unity, calm, love and grace was all I could see.  That spirit has landed on me, completely unforgettable.  I want her to live, to be well, how could she be dying when clearly she had so much love to give?  Isn’t that what life is about?  Giving and receiving love?  Don’t these two have it right?  Oh, I am so programmed to getting it right and there is no getting it right!  When will I learn that, when?  Even so, their spirit I will never forget, never!

They were called for her appointment, then I was called for mine.  Dr. W. was happy with my healing, Nurse C. told me that 1 year of treatment takes 2 years of healing and to be gentle with myself.  No swinging golf clubs for 2 years, no Dragon Boat Racing for 2 years, etc.  I am Triple Negative, so each month I survive for the next 18 months is important.  I am expected to live and do very well.  Dr. D. will see me in September and that was that.  One more Doctor off my list, that is 2 down in 2012!  As I walked out of the examining room and through the waiting area, the couple was back waiting.  He saw me and said “You, have all the whipped cream, you can my dear! Nobody knows what causes Cancer or how long anyone has left!”  They knew how happy I was to be done, they had been done just 3 years ago.

The Cancer Clinic considers me 1 Year Cancer Free.  Really, they do.  Even though it’s been a year fighting for my life, I didn’t die fighting … I am 1 Year Free!

Today, I had my first haircut!  I look healthy, I really do!  Still pretty much in bed by 7:00 pm … but tonite Sunshine is with me!

Thank-you, Jay (Careflash) and Joanna (momentumofjoy.wordpress.com) for your encouragement!

Thank-you, all for your encouragement and prayers!

Love and Relationships

As I am reading my CareFlash blog entry of October 19/11, I am overwhelmed at all that I had gone through in, looking back, what seemed like a short time.

I had:

• received the news of Breast Cancer,
• had an unsuccessful surgery,
• received a prescription for a wig,
• bought wigs,
• realized that it was Breast Cancer Stage 3 not 1 or 2
• immediately started Chemotherapy,
• started the steroids amongst other drugs,
• learned to embrace drugs,
•  lost my hair,
• had a grand-daughter – Sweet Pea
• abandoned the wigs, because the steroids caused swelling
• realized that “it was just about the hair” when in public,
• suffered through the Chills,
• suffered through the lack of energy,
• watched my grandchildren adjust; they always came to my house starving but not now, now they just crawled into bed with me and played on the iPad  🙂
• read what I could, when I could, about Breast Cancer and Sub-Breast Cancers,
• fought denial,
• cried,
• prayed,
• accepted,
• had a grandson – Little Sprout
• learned to give myself injections,
• asked for help from anyone available,
• told the truth about Breast Cancer:  there is no cure, I won’t be back, I will always have Breast Cancer, I will have a new normal.
• dreamed,
• loved,
• been in the hospital with a fever while on Chemotherapy,
• connected with other women with a similar diagnosis,
• dealt with side effects of the steroids and anti-nausea drugs,
• lost my eyebrows and eyelashes,
• lost my nose hair,
• lost my sense of taste,
• dealt with mouth sores,
• lost my toenails,
• began to lose my fingernails,
• to learn to deal with neuropathy in my fingertips and feet.

At my Oncology appointment Dr. D offered to reduce the dose of my Docetaxal to 75% and I took his offer.  It was sad for me.  I really wanted to have done all of it, at the 100% dose but it is just too difficult now.  Once the Chemo goes in, there are no adjustments to be made.  I also agreed to 10 injections from 7, to begin them on the Thursday rather than the Friday.  He told me that I had done very well, the Chemo, dose I am taking is the highest dose they can give, anything higher I would be hospitalized, so I agreed to reduce the dose.  (CareFlash Oct. 18/11)

During that time a girlfriend picked up and dropped off my sister-in-law at the airport.  Another took me for lunch and shoe shopping which entailed driving me directly to the door of the shop because I could barely walk … I was exhausted but it was mentally so very good for me.  Wore the shoes until I lost my toe nails.  Still can’t ware the shoes, my big toe nails are still missing and they rub against the top of shoes!  🙂  She also cleaned out my closet and took bags of clothes to Good Will.  G took me to Book Club even though I couldn’t read, my eyes were too sore.  At the time, none of these things I could do myself!  Looking back I am amazed at all the help I received and all the help I needed!

I have realized that I am a “glass 1/2 full” person and I don’t always see the negative and then when I do.  I am shocked.  Maybe I can change that, maybe not.  I have also realized how important each one of you are in my life.  I love all the soups and muffins but its your presence I love most.  It’s an essence after you have been here or I have been with you.  And believe me I am excited when you drop over.  Thank you for being here with me.  I am almost 1/2 way through.  (CareFlash Oct. 19/11)

I am very much wondering what it is all about.

My cousin often refers me to the scene in the movie “The Gods Must Be Crazy” where the guys are playing cards while the rest of the world is at war, chaos is all around them, they just continue playing cards.

Is it really just like that?

Certainly 2011 has been exactly like that!

Maybe my wounds don’t matter;  it’s love and relationships that do!

6 months ago … and now …

Six months ago, October 18, 2011, I wrote:

It’s hard to admit but I needed to plug in the fridge downstairs.   The stairs are too hard to do now.  

My house has the kitchen, dining room and living room on the upper floor.  My nurse warned me that the stairs would become a problem, they did.  I was fortunate, my extended family flew in and out to stay with me.  My eyes would dry up for 10 days and then run for 10 days.  I lost my nose hair; my nose ran constantly.  I was a sight!

That was 6 months ago.  Today, Mary, Madame President and Sweet Pea popped in for coffee/lunch.  I went for a walk, stopped at the Produce Market where the cashier asked me if I had just got off work.  (she did, me, with no eyebrows or eyelashes, and my chemo hair!)   Laid down for a nap.  Rochelle called, we chatted the nap away.   Had my first manicure, since loosing my fingernails to the Docetaxol and stopped at White Spot for my first glass of wine since the Radiation.  All done with my Chemo Hair, it felt wonderful!  It’s 7:00 pm and I am in bed … but I will read tonite, I am tired but just.  Today was a very good day, with just a hint of what life could still hold!

My friend B came for a visit.  She asked me what I had learned.

“I don’t know yet” I replied “But this I know, it’s not about me, it is SO not about me.  I have been blessed to walk this earth with the parents, brothers, aunts, uncles, children, and friends that I have and yes, my husband too, wherever he is.”

I am grateful for each day, even the ones I still sleep through!

Steve Jobs died at 56 years of age!

October 8, 2011 Careflash Blog entry:

My grandmother died at 56.  I am 56.  

I didn’t know Steve Jobs, although I do blame him, personally  for all the “auto correct”, mistakes I don’t catch in my text messages!  I did know my Grandmother in a way that only a 10-year-old knows, I loved everything about her, and I still do!  She was magical!

My cousin was just here for a week, she has piercing blue eyes like my mother only softer, happier, friendlier eyes.  One evening she looked at me and said “dancing on the streets of gold” and I said “or this”  and she said “exactly” with her smile and blue eyes sparkling just a bit.  Can she control the sparkle I wondered?  

“Dancing on the streets of gold” I said.  

She said “I hear you”  

It”s nice to be heard and listened too in those moments but none of us know what tomorrow will bring. She is back home now and she has a new fridge.  One day the fridge is working the next it is not and replaced with a new one.  That is just how life goes. 

I had a call from a woman just diagnosed with Breast Cancer and she said I’ll always have Breast Cancer, there is no cure!  And I said that’s true, you will always have Breast Cancer but you wont necessarily die from Breast Cancer, they are able to keep us around a bit longer and in some cases quite a bit longer.  She wants to  know how much time she has, I want to know how much time I have, but its Stage 3 and so …. These words are hard to settle in your mind especially when you live a healthily life and have plans for the future as we all do.   56 is not an age to die, nobody plans to die at 56.  I am not planning on dying at 56 but then neither did Steve Jobs or Grandma.  

6 months later, April 11, 2012

Today, I saw my Medical Oncologist, it was a good news day!  All my blood tests are *normal*  Yay!  I am experiencing bone and muscle pain from the Letrozole and I may have to switch to another estrogen inhibitor but otherwise I am done!

“What now?”  I asked Dr. D.

“You, go live your life; you must have a complete physical every 6 months.  Do you know when you were examined last?”

“Yes, you examined me in January”

Dr D checks his file, “Yes, I did, in January so you don’t need to see me till summer, I’ll be away all summer.”

“Me too!” I chime in, hopeful.  “I have an appointment to see you in September, not sure why.”

“Yes, I’ll see you in 6 months, I’ll be away for the summer so I’ll see you in September.  You are coming in for a check up on the study, let’s just do it all at the same time.”

With that I am free!  Free!  Free of the Cancer Clinic, free of the parking lot, free of the weight I have been carrying all year.  Free!

Dr D looks at me, “Ruth, there are no guarantees” he says.

“Okay” I think …

“We expect you to go and live life for a long while.”

Freedom, I feel completely free in this moment!  I am still dealing with mental fatigue and bone pain but I don’t care, not in this moment, not after thinking of all I have been through!  I am happy, happy to be alive, and free!

I am not completely free, I still need to check in with Dr. W my Radiation Oncologist next week.  Then if the side effects from the Letrozole don’t settle down, I’ll need to see Dr. D. but that is so minor, so minor to all that I have been through!

Praise the Lord!

I wonder what will be next in my life … I wonder … and I wonder when will I be “dancing on the streets of gold?”

There is a difference between living life for a long while and living a long life but I’ll leave that in God’s hands.  Joyful for today!

I am thankful and I am praying for peace, in my life and yours!

Chemotherapy and Thanksgiving!

This is my entry on my CareFlash blog at Thanksgiving, October 10, 2011.

Happy Thanksgiving!

I am so thankful for each one of you who has helped me, driven me, driven my dad, driven my aunt, brought me soup, muffins, prayed together with me, believed in me!  

I can’t do this and then with the help of friends I realize, I can. 

I am very thankful for all my family and extended family.  Aren’t they amazing … I have been at this since April and they keep showing up and helping out!  This is such a lonely journey, I couldn’t do this without them!  And Dad, he is 80 and up for whatever I am up to … well almost 🙂

I am grateful for my girlfriends, how they can just show up with appys and wine and party with me in my PJ’s!  Love it!  They all had time to lunch together when I reached the 1/2 way point in my Chemo, girls I am almost through!

I am grateful for my kids, the way they showed up and had a wonderful party for Dad’s 80 birthday complete with a Web Page!  Awesome!  And the food, Dad loved it!

I am grateful for Gavin, bringing Butter Chicken for Thanksgiving Dinner, knowing that I had limited energy for any celebrating!  I am grateful to Rochelle that she didn’t bring her cold to me 🙂 I am grateful for Mary in Manitoba making Joe’s family a priority in their lives.  I am grateful for JJ Single, he is just being JJ Single, making friends and getting A’s at U of T!

I am grateful for the cards you have sent to encourage me, the notes you have sent to let me know others have done this journey and have their lives back.  The cards come in the mail as a little surprise encouragement, love it!  If I get my life back and my energy, I would like to make some changes, I hope I am bold enough to find my joy!

I am wondering if I should be thankful for my new hair, hair loss is a guaranteed side effect of all my chemo, and yet I have hair and quite a bit of it!  Is the chemo too busy killing the cancer that it has forgotten to kill the hair too, or is God reminding my that He knows now many hair are on my head at all times including this one!

This is interesting but I am grateful for all the pills and drugs I am taking.  I didn’t like taking pills but I have no problem with it now.  And I am thankful for them!

I am grateful for each one of you in my life! 

I find it interesting that in the middle of all the side effects and treatment, I am hoping I am bold enough to find my joy.  It has been a hugely courageous experience, the treatment, hugely bold.  I have done it one day at a time, with your prayers!  I am spent, exhausted, depleted, tired, sleepy, buzzed, vacant and joyfull!  All at the same time!  If I am going to make changes … I’ll have to wait for more energy.

I hope you have all had a Wonderful Easter!

He is Risen, He is Risen indeed!

Steroids, gotta watch’em

I live at the coast, I live on a bluff, just 4 houses south the land drops off to the Ocean.  The air is fresh and wonderful here!  It is also full of salt.  My new (2007) barbecue had shown signs for rust a couple of years back so my dad, with all good intentions, tried to remove it.  Well, the rust actually took over the barbecue instead of disappearing!  Poor Dad, he couldn’t get over that, the barbecue was completely wrecked although it still fired up.  Each time he comes to visit he feels he needs to work on that barbecue.  It’s hopeless but he goes out there and fusses around.  I had had it with that barbecue, had it!  I was also “HI” on steroids.  🙂

“That’s it, Dad I am done with that barbecue!”

“Well, what do you mean?  It’s a new barbecue.”

“Dad, it was new, it’s shot, we are going to buy a new one, right now, let’s go!”

“Where are you going, it’s the end of the season, where are you going to find a barbecue now?”

We get in the car and I drive straight to a little barbecue Shop not far from my house, we start at the “low-end” barbeques and end up at the “high-end” barbecue.  Remember I am a single woman living alone but I don’t remember that.  I buy the biggest barbecue they had.  Then I want it delivered.  No, they can’t do that.  Not possible.  They ask me if I have support people.  I just looked at them, lifted my Chemo hat to show “no hair” and said “This is it, he is 80 and I am on Chemo!”

After a lot of flurry in and out of the back room a deal was struck.  If I would pick up the barbecue on Thursday night, Chad would come over, bring it up the stairs and assemble it.  “Yes, I can do that!”

We returned home and Dad worked like a beaver to disassemble the old barbecue before the new one arrived.

I called Rochelle to see if Frank would help Dad haul the barbecue down the stairs and to the road.  Frank was shocked “Who let her out! She has cancer, what is she doing buying a barbecue in October!”  Yes, he would help the next time he was by.

The barbecue Shop called, it would take 10 days before the barbecue would be in stock; I would be off the “HI” of steroids.

Dad got the barbecue disassembled.  My girlfriends would drop by and mention that I had a lot of metal down by the basement suite.  I hadn’t noticed, I was in resting.

“Dad, the old barbecue, um, it should go out to the curb.”

“Yes, I working on taking it apart and I have it all down by the basement suite, nobody can see that from the street.”

“Dad, it needs to go out to the curb.  That way people can see it, to pick it up.”

“You can’t have that out there, this isn’t a Nuisance Ground Ruth, your neighbours will complain.”

“OK, Dad put it to the curb, we will go for coffee, and if it is not gone by the time we get back I buy dinner, if it is …”

The old barbecue was GONE.

I started to think about my purchase.  It has that nice, special searing grill on the side to sear the steak just right …

I have Breast Cancer, I am supposed to reduce the amount of Red Meat I eat, I live alone, what do I need a huge barbecue for?  My VISA is already busy with the Neupogen charges, it doesn’t need a barbecue too.  I don’t need a huge barbecue; I don’t even need a barbecue!  My mind begins to chatter …

I have a lovely barbecue and once in a while I grill a few peppers!  🙂

Steroids … I gotta watch’em.

In everything give thanks!

The day I met the Cowboy

September 26, 2011,

My oncologist is on holiday so I saw another oncologist today.  This other oncologist wore teal green cowboy boots.  Now, I like a man in summer, in jeans, in cowboy boots, outside in the sun, wherever but not in the rain at the Cancer Clinic as my oncologist and not teal green.  But then again who becomes an oncologist?  If you were an oncologsit how would you be noticed?

Apparently the sunburnt hand is from the Chemo but the peeling of the skin is from the very strong antibiotics.  So the man in the teal green boots tells me.  There you go, I once again, have learned something!  Apparently I handled the fever etc. *excellently,* so he is going to hit me again with the same dose!  Nobody like the Docetaxel, he says, it does not mix with water so they mix it with a detergent and that is what gives us Breast Cancer patients all the problems.  Crazy stuff, is he telling the truth?  He then proceeded to talk about FairPharmaCare and money and I started to look around the room for more feet that he could possibly put in his mouth.  O, well it’s probably just me.  This whole Cancer thing is taking a lot of time and energy! He meant well, he really did, and he meant to encourage me, it’s just that I have been around the block in life a few times and … well again … he meant well, I have to believe that!

So round 6 on Wednesday!  Actually the Chemo and the Neupogen are a surmounting foe.  The Neupogen stimulates the bone marrow into producing more white blood cells, the bone marrow, in turn, complains, thus pain.  I am taking a drug to dull the bone pain otherwise I can’t sit up.  The Chemo takes down the white blood cell count, last time it took all 7 injections to bring it up … here’s hoping that it is different this time!

When I look back on these notes and posts, I had no idea just how difficult the tasks ahead would be.  No idea.  Just living moment to moment, coping day-to-day.

What is it all about?

I loved this post from mainelyhope.wordpress.com
She says it all perfectly …

mainelyhopeful

I do a lot of online shopping for my business so getting packages delivered is nothing new, but every day is an adventure lately when mysterious boxes arrive and I have no idea what they could be. Apparently within the last week someone decided I needed two boxes of business cards.  I do actually need them but one box usually does me for the better part of a year.   It  was probably the same someone who joined two book clubs within a weeks time and managed to order several duplicate books.  Someone has also been misplacing things around the house lately.  At least that isn’t costing me any money, but it is very annoying. I have it on good authority that chemo brain isn’t “real” because there is no treatment for it.  So.   

Nothing too terrible or dangerous has resulted from this non side effect that doesn’t exist. I continue to lose words and at lunch wanted badly to order killer…

View original post 212 more words

The day I needed Soap and Napkins!

… Back to Chemotherapy …

In my post “Healthy Living” I mentioned that I would be on steroids while on Chemotherapy.  The purpose was to help keep my blood counts and my weight, up, yes up!  I am only taking the steroids 3 days each round; the day before Chemo, the day of Chemo and the day after Chemo.  I think it stays in your system … check with your doctor … pretty sure.

What I didn’t realize was just how it would affect me.

I remember it was my birthday and Aunt Bea was here, visiting me, cooking for me, and being available.  Aunt Bea is a morning person, I thought it would be a good idea to go out for breakfast and make a few returns, I needed to hit Future Shop and H&M.    I was also out of hand soap … you know the whole “wash your hands, wash your hands!” … so I needed to hit Bath and Body Works, because you know … I needed to … and if we were already in Richmond … I was out of napkins … we should hit IKEA.

Seriously, this completely made sense to me at the time.  7:00 am we are up and out the door, off for breakfast.   My old neighbor, (well, she is not old, but I feel like she is from a past life) calls, wants to have breakfast with us, she has a birthday gift for me.  She stops in a the restaurant and visits with us.  It was a nice visit but now we are off.  Off to Future Shop, it doesn’t open until 10:00am, we stop at H&M same thing, I wonder “What do morning people do all morning?”  I check the time, if we leave for Richmond, we will be there 45 minutes, Bath and Body Works should be just opening, so off we go.  Aunt Bea is excited about going to Bath and Body Works, she wants to get some soaps for her daughter and daughter-in-law.

I barrel down the highway like a calf out of the shoot, changing lanes and chatting.  I was right, Bath and Body Works was open, I bought a bag of soaps, Aunt Bea not so much, but she was happy with her purchases.  And we were off to IKEA.  By the time we reached IKEA I was visibly tired.  There was no reasoning with me.  I got a cart and leaned on it … I was on a mission to buy napkins!   IKEA in Richmond is the same size as it is everywhere, huger than huge, larger than large; we took a short cut (never short), I knew where the napkins were, and we stayed on the bottom level.  It was as if my brain was directed by the steroids and my body directed by the chemotherapy.  I was determined with a dragging, leaning body.  When we reached the napkins, I filled the cart.  I can still see the surprise in Aunt Bea’s eyes but she didn’t let on, just smiled.  We filled the car with napkins and return to S Surrey, to Future Shop and H&M.  Errands completed we returned home, where I crashed.

You can buy napkins and soap anywhere.

Who was that in my brain making those crazy decisions?

Little did I realize … I would be making another purchase while on steroids … it would make even less sense …

It makes us laugh and laughter is good medicine!