Friday, August 30, 2013

Pink Ribbons ~ Pink Washed

Pink Ribbons is a series of journal entries dated during July 2010 - March 2011.  These are my experiences in that time, shared with you now.  This entry is from October 2010...these are NOT current events.   

Pink Washed....

My third chemo treatment is under the belt and I'm cruising through the month.  I'm preparing to celebrate the 29th anniversary of my 21st birthday.  No lie there.  I'm kind of tickled that someone must have told the NFL that it's my birthday.  They are celebrating it by wearing pink uniforms...all month long.  Just in case you wondered why such manly men are wearing pink.  :)  They are doing it to celebrate my birthday.  Such a momentous birthday SHOULD be celebrated all month long.

That's all fake hair people.  lol

Yes.  I know that this is really all about Breast Cancer Support...the pink ribbons and all.  I go to the stores and everything is awash in pink.  Frankly, I don't need any added awareness...I'm pretty much in the thick of breast cancer awareness right now.  But seeing all the pink makes me feel supported and like everyone is cheering me on.  I have a friend who hates this however.  To her, all the pink is shouting...YOU HAVE CANCER.

I don't know why people see the same things through different lenses.  Another acquaintance told me that she feels physically ill whenever she sees commercials for our cancer center.  But I love the people there.  I'm getting good care, support and they are helping me fight this battle.  I am filled with tenderness when I see reminders of the Missouri Cancer Associates.  My sister called to tell me my oncologist was just voted Doctor of the Year....YAY Dr. Joe!  You deserve it.

We are complex, us humans.

I want to use Dr. Puckett for my plastic surgeon but I will have to think about this.  He has privileges at one hospital and my surgeon at yet another.  Neither have privileges together in the same hospital.  But the other P.S. just don't have good reputations.  How sad.

This is also a challenging month.  Mom has decided to have a surgery that will repair some internal female bits so she will be more comfortable, having a better quality of life.  Her liver doctor has refused to support her decision, saying it will kill her.  She has told each of us...we know she is dying.  Even if she dies in surgery, she is doing this surgery to improve the quality of her life.  I have to respect and accept that.

There's an October chill in the air and this evening I had Mr. Rosey run me out to the local Walmart.  I find I am in need of heavier weight scarves.  I don't know how bald men deal with chilly temps.  Daddy was bald and he RARELY covered his head.  I got cold just in air conditioned rooms and I have to sleep with a lightweight cap or I awake in a bone chilled state.  So I ran out to Walmart.  No one bothered me and I didn't want to pinch the head off anyone.  Mr. Rosey told me the public has seen my facebook posts and I've scared everyone out of the store.  lol

One of the heavier scarves twisted into a headwrap.

My Mr. Rosey has his share of trouble as well.  I'm dealing with bone pain while he's getting his infusion of medications.  His port clotted off and will require a replacement.  So he's having surgery next week. We currently have dueling diagnosis'.  

I'm trying to prepare dinner and my spine started pulsing.  Once you've had bone don't forget the characteristics of it.  It pulses with the heartbeat but comes in waves like childbirth contractions...they build, peak and the lessen.  I find myself chanting like the "Little Engine That Could" only my chugging chant is "I can do this...I can do this...I can do this."

There's a definite chill in the air this morning.  I sat on the back deck, wrapped in a fleecy blanket sipping a cup of coffee as I basked in the bright sunshine.  Yesterday I took a cake and spent the day with mom.  I was born on her 18th birthday so we shared our birthday cake together.  She looked so frail and so fragile.  I fear it is our last birthday together.  But we had a wonderful visit and she lectured me sternly about listening to my doctors and following their instructions.  It felt good for a bit to let her be mother and I be daughter.  Our birthday is actually tomorrow and then she will have surgery to lift her bladder back into place.  There is great concern that she will not survive the surgery.  My heart is heavy and my spirit is low.  I want to place her in God's hands but fear He will take her away.  Typical I suspect...we claim we pray for God's will and then fear what it will be.  So many people quote Scriptures to me about God's plans and will but don't understand MY idea of what's best may not be HIS idea of what's best and I'm not ready for that yet.

Next day...
Today is my actual birthday and I spend it in a doctor's office this morning.  Mr. Rosey has put a lot of effort to making this birthday a special one.  It turns out I also share a birthday with my plastic surgeon.  I wished HIM a happy birthday and his grin was bright and happy.  I really like him.  Dinner out last night and lunch today...I'm spoiled.

Just hours before Bandit passed away.  

We arrived home to find out long time furry companion Bandit struggling to breathe.  It was obvious we had to do something.  We tried to get him to the Vet, but he passed away on his his daddy's arms.  It seemed to happen suddenly...but he's been having seizures now for a year.  Not often, but enough we knew the end was coming.  We've had him since he was a puppy - 8 weeks old and we miss him already.  This so sudden after Leia lost her eye.  Mom has her surgery tomorrow and my last dose of chemo is this Friday.  I want to look forward to that, but right now...everything has weighed down my heart.  I'm too concerned for mom to think of much celebration for this last chemo day.  But there is a Red Letter Day coming quickly!

Tuesday, August 27, 2013

The Empty Nester

We have all heard about the difficulty of the "empty nest".  Many articles have been written on how how to prepare your marriage, your home and yourself for the sudden loss of the active role of mothering.

My son led us gently into the empty nest.  He had been moved out for 6 months before I asked..."he's not coming home again is he?"  He had been working nights and frequently spending the day to sleep over at a friends.  I looked around one day and recognized my empty nest.  But I realized a few other things as well.

  •  No one cares how late I get up or how early I go to bed.
  •  I no longer had to wait to go to the bathroom.  No more hysterical tears on the other side, no quizzical fingers poking under the door.  No more holding a child on my lap while I did MY business.  I showered as long as I wanted.  I didn't even have a teenager knocking on the door because his hair took longer to style than mine.
  • I could fix food the way I wanted to.  For years I had been leaving out the onion, mushrooms and black olives from my spaghetti.  I was preparing dinner for my husband when I realized the "kid" wasn't going to be home for dinner.  It was with glee that I started dumping additional ingredients into pot.  Things that would have curled the boy's nose into a pig tail...we chowed on the dinner like we hadn't had real food in 21 years.
  • You no longer have to be "quiet" for the good ole "boinka boinka whoo whoo".  In fact you can rip a page from your memory books and initiate the couch you bought 10 years ago.  But just to avoid surprises, throw the dead bolt on the outside doors.  No sense in causing the kids to have to burn out their eyes because they caught mom and dad in living room horizontal fellowship the night he decides to unexpectedly stop in with his girlfriend.
  • The tv is yours ago.  So is the phone.  And the computer.  So is the car.
  • Speaking of the car, it no longer mysteriously parks in your drive way with an empty gas tank.  The flip side're pumping the gas again.
  • You can ditch the bra at home if you want.  Use caution with this however or you must refer to previous notes.   You no longer have to have a robe within the arm's reach.
  • The volume of laundry and dirty dishes goes WAY down.
  • You can remove the revolving door off your refrigerator.  The grocery bill goes down and amazingly what you do buy...will last longer for the two of you.  However there's less people to unload the grocery bags.
  • Got a sudden desire to see a movie?  It's your choice all over again.
  • Only YOU know where the chocolate stash is hidden now.
  • You can buy those sweet Scentsy wax warmers for the fragrances you like...not just fragrances that mask the odor of tennis shoes and sweat socks.
  • Quiet.  Seriously.  You can shut off the tv and talk to the spouse about your days without "moooooooom" (be sure to read that in the lyrical, obnoxious notes of an impatient teenager).
  • Your social calendar opens up.  At least until grandchildren arrive with ballet and Tball games.
  • You worry less.  Seriously.  When you don't KNOW the schedules of your kids, you aren't worrying about them coming home late, not coming home at, coming home drunk, or coming home with girls.  In this case, Ignorance IS Bliss. 
So my friends, the final note?  The empty nest is something that can be looked forward to rather than dreading if you put just the right spin on it.


Monday, August 26, 2013

It Ended Before I Was Ready

I stand at the window and watch.  The neighbor is out with his kids and they throw a football between them.  They are gearing up for fall.  I too look forward to fall...the football games, the soups, sweaters and finally a temperature where I'm comfortable.

courtesy of 

But I also have a sadness.

I am an out of work mom.  The empty nest is not as difficult to deal with as I was warned.  My husband and I find new interests and activities.  But this season brings out a longing I can't deny.  I see younger moms in the stores smiling as children excitedly pick out this year's backpack.  I look at the photos of smiling first graders.  I listen to little friends tell about their teachers and new best friends; their excited chatter warming my heart.

Those days are over in my house.  The student is grown and lives in his own home with his wife and new puppy.  I think back to how I rolled my eyes at homework, assignments and the schedules.  Even though I schooled at home, I too thought how glad I would be when "this part is over."  But I kid no one when I say, I'd do it again in a heartbeat.

To curl up on a couch with a listening student as I read our current chapter book.  Leaning over his shoulder as we tried to figure out the directions on this assignment. The excitement when they accomplished something, celebrating the test score with him.   I know I cherished those moments at the time, and a relationship was forged between he and I that has not been diminished just because he no longer needs help with sounding out syllables.  But it ended before I was ready.

So mom who feels harried because the first weeks of school bring homework, notes from teachers, fund raising requests, parent/teacher meetings and your schedule is bulging...take a deep breath.  Before you are ready, you will be standing at the window watching school buses letting your neighbor out and listening to their shouts of happiness and play.  You will turn from your window and look across your silent home and wonder, how did it go so fast.

Tuesday, August 20, 2013

My Abba

I'm quiet in this room as I sit here thinking of my place on this planet.  My purpose for being here and why exist.  Yes.  The big questions...

My relationship with God has always been rocky.  I was raised with the mentality that Jesus was my salvation and God was my punisher.  When trouble surrounded me I tended to blame it on God...thinking it was my punishment.  (Frankly many "Christians" were eager to reinforce the idea.)

My testimony is twofold.

I was to find God was my Abba and He loved me despite all the junk I was taught over the years.

The other testimony is that He sustains me.  He is Big and broad shouldered.  When I ran away, when I pushed Him away, when I was mad and yelling at him...He was still there taking it all.   He did not scream "Blasphemy!!"  He did not crush me under his thumb and condemn me to hell for daring to yell at Him.  Unknown to me, His arms were still wrapped around me, as he rocked and cried with me in my grief.

I have a different view of God now...more like "The weeping Father".  I see Him now with his hands tied somewhat by our sinful natures.  I think he grieves for this fallen world, how corrupt, how diseased our world has become.  I see His arms folded around himself as He sees our pain and disease and the hateful ugliness that so many endure.  He hurts and longs to reach out and fix it.

But this world does not belong to Him.  This is not His dominion.  Yes.  I believe in Miracles.  I believe in Healing.  I even *gasp* believe you might change God's decision *double gasp*.  ( I understand the argument can be made whether God changed His decision or just took His time bringing the ultimate decision)   But I know that in many things, if He was to swoop in and miraculously rescue us, it would stop the forward motion of someone else.

Meaning...our lives are not always about ourselves.

I used to believe that mom and dad got married...they decided to have a baby or in their case, it wasn't really so much of a decision.  They thought I was an "oops".  I thought that my parent's jumped ahead, so God needed to create me.  He figured out how to mix their dna to come up with ...ME.  Then he planned out my life.

But now I think I had that wrong.

Have you seen Louie Giglio's presentation of the planets?  If not, try this one...

I wept through the whole thing when I watched this the first time.  The Great Abba created this Majesty from the beginning.  I pondered this for several days and I began to think outside the box.  I think I had it wrong.

I believe God worked backward.   When He made that decision to create Eve (face it, Adam wasn't going to multiply by himself) He also saw the total finished package down through all time.  And I think perhaps He worked backward.  He created my son, wrote the plan for his life, his purpose and then chose me and my husband to create the life that would be my son.

Then He created me.  He decided WHO I would be.  He wrote my PURPOSE, and he wrote my LIFE.  When sin entered the world, He saw how other lives would intersect with mine and how their bad choices would impact me.  How they would hurt me.  And then He worked in my life...throwing away the things that would not shape me into the woman he designed...keeping those painful things that shaped and refined me.  When those things came to pass, He held on to me, knowing that in time I would understand better.  But right then He cried with me; regretting how this fallen world hurts His beloved.

Then he chose the couple whose DNA he would combine to create me.  It was an accident of passion that brought my life...but God used that to shape who I would become.  My mom was shaped by her parentage. My father by his and all the way back it goes to Adam and to Eve.  God wrote the lives of his children and then refined them. At last, I breathed air and my existence started impacting the people around me.

I don't claim this to be factual, doctrinal or anything other than an intensely holy moment for me and how I feel I came to be.

I believe the day I was born there were THREE anxious people awaiting my arrival.  My mom and dad and my Abba.

He determines the number of the stars and calls them each by name.
Great is our Lord and mighty in power; his understanding has no limit.
Psalm 147: 4 & 5

Wednesday, August 14, 2013

Pink Ribbons ~ Difficult times

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.  This entry is from early October, 2010.

Life goes on, even when you are fighting cancer and going through cancer. Babies are born, people die, friends get sick and you just cope as best as you can. But I feel like a tea cup that has been over filled. My outside is fragile...and my cup is full with my own trauma. My pain, my concerns, trying to live life with a potentially fatal ending..the cup is full. I'm okay putzing along in my own pain and my own existence while on chemo. But I find my ability to cope with anyone else's trauma is immensely diminished. They share the trauma with me and my teacup explodes from the excess. I can't hold it all inside. This what happened this week. In addition to this, my mom is drawing closer to her own surgery. I think she's hoping she will die in surgery. I feel panicky at the thought..

This week Mr. Man and I have had a few giggles as we attempt to dry my hair. lol It’s good to have a mate who is right there with me in this. One day he surprised me with a Marie Calendar’s banana cream pie...oh my! I asked him what he was going to eat. He thought I was joking. I let him have a piece, maybe two. Since he also surprises me with the occasional chunky monkey....I thought I could share.

Can't recall if I was able to share this news or not. I had been frustrated because the plastic surgeon I heard good reports about didn't do surgery at the hospital I'm having the mastectomy. Remember that? Well I called the surgeon and asked if they ONLY did surgery at the hospital. The nurse asked specifically, "are you wanting Dr. Puckett for the reconstruction?" (Kind of assured me that she knew his name).

She said my surgeon had never been asked to work with Puckett but he was willing. So she spoke to him and called me back. I will be having surgery at an outpatient center next to the hospital so I can have both surgeries. Then talking to Doctor Joe about the tentative plans, he informed me that Dr. Puckett was the plastic surgeon they chose to do his wife's reconstruction.

whoop whoop score!

When an oncologist tells you who they chose it’s a big recommendation! It's early now and no specific dates...but the mastectomy is tentatively scheduled for the first week of Dec. The other surgeries will be in Jan or after radiation.

Mr. Man’s treatment starts tonight. The house is not up to its standard. It bugs me but not much I can do. I did some dishes yesterday...took me all day. One dish and sit for a while. I know I don’t have to do them but as I told him it’s hard to sit and do nothing.

We have been challenged as well. It has been a difficult week. Last week Leia came in from playing in the backyard blinking her eye. I thought she had something stuck in it, though we couldn't see anything. She’s always getting dandelion seeds on the eye, and I rinse them off with a little sterile water. But she kept blinking. I kept watching it and then on day 2, it was gummy with discharge.

We took her to a local vet who raked us over the coals. He implied she might lose her eye from our negligence and I think I cried all night long. He went us home with 3 different kinds of eye drops and a warning to give all the meds around the clock. So we set alarms and gave her eye drops and pain meds and antibiotics around the clock. We had her checked after 5 days and he said she was recovering nicely and just finish the meds…but we could stop the around the clock doses…just do daytime.

This morning, I woke up and her little button eye was flat and grey. I called the vet and told them something was wrong. So we stopped in on the way to my blood draw at the clinic. I thought they would tell me I was over reacting. They did not.

It was the associate vet, a woman and we liked her a WHOLE lot more. But she took one look and started saying "oh no, oh no…this is bad." My poor baby’s eye is basically dead. Its near rupturing even though it’s flat and dull. The surface is sloughing off. She told us about some space age procedures that the university could do but she would most likely lose the eye anyway. So we decided to have the eye taken out. Then I totally lost it...ugly cry style when I realized the doctor meant right NOW. I had to leave Leia without preparing for it. We did, and I went to the clinic bawling my eyes out the whole time.

I waited in the hall with my ugly cry still going on….rather emotional I think. Everyone misunderstood. A dozen people stopped to hug me and tell me to be strong and courageous…that I was strong and loved and to keep fighting. I guess when a bald chick has an ugly cry in a cancer center waiting room…people don’t assume she’s crying over her puppy. Lmbo People stopped to hug me and bless me and tell me it will be fine and they are praying for me…and I nodded through my tears and thanked them and in my heart told God…use those prayers for Leia. I told K that we might have to call Leia “Lucky” now that she’s going to be one eyed and three legged.

They called not long after we got home. She came through surgery well and was perking up. We could come get here in the morning. This all the trauma I can cope with right now. I’m just having a hard time coping with the whole thing right now while I’m dealing with my own pain and concerns. I’m sick to my stomach but I know it’s emotional in nature.

Linda - I am praying that your pain eases and that you're able to be with your mom when she has her surgery, and praying that her surgery goes well.

I hope you don't think it's silly, but I also prayed that you'd be able to taste the chocolate. (((Tina)))

Rosey - No Linda, not silly. I consider chocolate an essential food group. :) I have taken a pain med already as I can feel the bones are amping up. I can groan through pain at a 5 or 6 so if it stays below I can deal with it. I’m sucking on banana pops to try and stay hydrated too.

You know the thing about the hair towels was they were pink BCA merchandise as well. I know that people without cancer buy the pink ribbon stuff in support of someone or as a donation. I thought it funny that the merchandisers or the store didn't consider how a survivor would view the towels. But I choose humor. I have a friend diagnosed the same day who is having a really hard time. October is beating her up because she feels everywhere she turns; the world is shouting she has breast cancer. :( I’m kind of enjoying all the pink. It’s like the world is supporting me in recovery! But she and I are different people and bless her....she has to work through her chemo. That just seems impossible to me.

Meeshia - We will keep praying for your lap buddy and for those antibiotics to work its wonders. I am so glad you had such affirmation on the doctor you wanted for your reconstruction surgery. And I agree with everyone else about the pain meds... keep ahead of it. Just like everyone has said, it is easier to keep ahead than to catch up once it hits. But you already know that from a nurse stand point and from experience. Since I went back to work I don't have as much time to get on the computer, but I wanted you to know I keep on praying for you.

Linda - oh Rosey, that's depressing. :( I'm sorry :( I'm praying her eye will be ok. That poor dog has been through enough.

Beth - I cannot say enough how powerful it is to read your words each day. You help us see so many of the trials that cancer patients must endure. Things that often go unnoticed and ignored. I had no idea the details of this battle personally. Thanks so much for being honest and open with us. I think all your entries should be put into a book for other families and friends who either are going through this or walking beside someone who is. The hard part is not feeling like we can do anything to help, even though I know how powerful prayer is and some of the other small acts of blessing you. What I WANT to do is take away your pain. I can't imagine how KJ must feel. Just want you to know that I appreciate the effort you give in writing down this journey. I pray for you often....even in the little details. I am praying your sweet Leia is okay, too.

3 months after she lost her eye.  She has a permanent "wink".

Tuesday, August 13, 2013

The 'Speriment!

The sun was shining brightly and sat warm on my face.  I lifted my eyes to view the sky and took a deep breath.    I smiled as I thought, "Today is a good day."

I was on my way to Aldi, my weekly journey to replenish the pantry in our household.  I was feeling so good.  On the drive, I was reflecting on a program I had watched where one good turn spurred another one.  So I determined THIS day, I was going to smile and greet every single person I met.  I wanted to see how many "frowns I might turn upside down" and wondered how many would greet me in return.

I parked the car, and walked to the front of the store where they had their carts corralled.  It was the first test.  I smiled and greeted an elderly woman, "Good afternoon, lovely day isn't it."  She answered, "afternoon to you" but no accompanying smiles.  I greeted a young mom with little ones in the cart.  She blew her hair out of her eyes as she smiled and answered by greeting, "Hey".

I was pulling my cart toward the door when another couple walked up to the carts.  The woman was wearing a simple house dress with sensible shoes.  She could have used a stronger bra, but at least at her age she was wearing one.  Her graying hair curled around her face and there was a twinkle in her eyes as I greeted her with a smile.  It was her husband who took me aback.  I smiled what I hoped was my most friendly smile and greeted him with a "hello, good day."  I was rather surprised to see his eyebrows lower and a frown grow on his face.  His grey bristled face was not encouraging me, so I scurried down the aisle.

I mosied down the aisle picking up my selections, making sure I still greeted the store employees and anyone else that came down my path.  I stopped at the dairy case to compare the various prices with my price book and was intent on my chore.  I stepped backward, and immediately felt that something wasn't right.  I turned my head to see the now glowering frown of the elder man that moments before had rebuffed my friendly effort to spread smiles.  I apologized for stepping on his foot and moved down the aisle.  I saw him say something to his wife, and she looked at me as well.  "Oh dear," I thought.  "I really offended him."

I continued around the store and I'm pleased to report that other than the gruff older man in the faded denim overalls, everyone I greeted smiled or at least spoke.  In the freezer aisle, I came across the couple again and felt their eyes on me as I reached into the freezer for the skinless chicken breasts.  I walked on up to the front of the store to get in line.  I usually have a wait of more than a few moments before being able getting checked out.  It was standing in the line that I felt that tap on my shoulder along with an "excuse me Miss".  I turned to find the gray haired woman at my side, her over-all covered husband in another aisle trying valiantly to not watch.

I looked at her and asked if there was something she needed. She shook her head and asked "I's juss wantin' ta know. Were's ya flirtin' with my man? The old geezer says you keep smiling at 'em and he's convinced that yer flirtin with a married man."
I bit away the chuckle that wanted to bubble out and I assured her that I had not intended to do any flirting.  I explained about my desire to see if I could spread smiles around by smiling first at people.  I wanted to see if smiles were really contagious.

"Oh, kind of like a 'speriment?"  I nodded that was exactly what I was doing.  She smiled and accepted my explanation and hoped my 'speriment was better than her Harold was showing.

She walked over to her husband and beaned him up side the back of his head, "Harold, ya old fool.  That girl wasn't flirtin'.  She was doin' an 'speriment and yer grouchy old self ruined it.  Now she can't say that everyone smiles when they sees a smile!"

I didn't catch her name, but I would have to tell Harold's wife that it's okay.  The 'speriment might have been "ruined" but once I got to the van and locked inside, I had quite the belly laugh over Harold and his fear of strange flirtatious women.

Smile and the world smiles with you!

Tuesday, August 6, 2013

Invisible Disease

photo credit - Tracy Andreassen
10 Years ago I had a traumatic fall.  I was left with a paralyzed leg and using a cane for walking.  Even when the nerves regenerated I was left with a foot drop which leads to frequent stumbling.  I am a fall me, no one hires me because of that title.  I still use a cane for stability...I use it hoping that IF I stumble, it might help me catch my balance before I make an inglorious splat in  "action aisleway".  I have several canes...some for stability, some actual weight bearing.  I change canes like purses.  My cane however is an advertisement...similar to that of a chemo cap....something is wrong with this person.  And MOST people are compassionate and assist me with doors, lifting and general thoughtfulness.

I have other diseases as well...diabetes.  Sometimes in public, my sugar drops and I feel slightly confused but VERY wobbly.  Before I started carrying glucose with me, I would fumble on my hurried way to obtain something to bring up my  blood sugar.  Though I wear an medical ID bracelet identifying me as a diabetic it is really not much of an advertisement.  So as I interact with the general public, they do not see me as a diabetic in need of sugar.  They see me as a slightly goofy, clumsy overweight woman indulging in a sugar binge.  Diabetes doesn't carry it's own advertisement.

I have a young friend that broke his leg.  He proudly displayed his lime green cast as people asked for details, clucking their sympathy.  They patted him, helped him through the potluck line, and generally waited on him.. No one expected him to participate in given activities after all...he had a broken leg.  People were compassionate.  His cast advertised something was wrong

I have a loved one with an auto immune disease.  His disease attacks his nerves directly.  His own antibodies attack his nerves and attempt to destroy the protective covering around the nerves (myelin sheath).  When the protective covering is thin or gone, the nerve ceases to work.  Once he was diagnosed, he was given a treatment which requires a monthly infusion of a special medication that prevents his antibodies from attacking the nerves.  But the effect of the medication wears off before then next infusion begins.  Of course it effects his right arm and he happens to be right handed.  So his handwriting gets sloppier.  He ability to hold things securely lessens.  Before he started treatments, buttons and zippers were difficult to operate.  This is a man who doesn't adapt well.  To HIM, adapting means giving into the process or disease.  So he fought every assistant device created.  He was totally humiliated in a buffet restaurant when on the way to the table, he dropped his plate.  Servers rushed to clean up.  He felt the eyes of the whole restaurant upon him.  In truth, people looked but when back to their own dinner.  HE felt they looked and judged..."fat man got too much food to carry."  He finished a salad and left...never really eating because he embarrassed and convinced everyone was watching him eat.  Neurological disease doesn't carry an advertisement.

This last spring I was diagnosed with psoriatic arthritis.  I had such a painful winter.  I was barely able to move.  I lived on the fringes of everyone else's lives.  My laptop was my window out of misery.  Getting out of the house required more energy and endurance than I had.  For me, life had hit an uncomfortable halt.  People did not understand my limitations.   I had someone ask me, "isn't that just an arthritis?"   There was no advertisement for what I felt.

Many people have no concept of what this disease is...or other arthritis type disease. They don't understand fibromyalgia, CRPS, chronic pain, chronic fatigue. the dozens of other invisible diseases or plain diagnosed disease.  They don't know how bad you may feel.

You see their judgement in their eyes when they don't speak it.  Often they speak condemnation with unwanted advice.   "Maybe you should just MAKE yourself try it and it will get easier".  "Well I know, sitting at home doing nothing can't be helping you."  "Have you tried blueberries...I read this article on facebook..."  And hundreds of comments like it.  We hear the comments like blame...."you're not trying.  It's all in your head.  You are just lazy.  You were never very social anyway.  You're a hypochondriac."  They think it's helpful advice but it hurts and defeats and attacks.

Invisible disease carries no cane.  It has no chemo cap.  No emblems, therapy pets, or special support systems.  There's no special license plate to put on the car stating you need special consideration.

Yet I'm struck how we might enjoy our world more if everyone extends courtesy to another as if everyone had their own invisible disease.  My Mister recently told me he was making an effort to be more kind.  If we all stopped obsessing in our lives and miseries and considered for a second the person you are interacting with has their own invisible difficulty; we might all be more kind.

Thursday, August 1, 2013

The Razor I Walk

Last Radiation Treatment

The tests are done.  Surgery is completed.  Treatments are finished.  The nurses smile, hug you and wish you well.

You are relieved.  You survived.  You are done.

For months, nearly every body function has been checked and rechecked.  Are you having regular bowel movements?  How's your skin?  Are you seeing double?  Are you doing okay with the hair loss?  How's your pain?

For months, you have not really directed your health as much as held on for the ride while the professionals looked after you.

The day of my last radiation treatment, the END of my active cancer treatment - I spent celebrating with my family.  Two of my sisters drove up to surprise me at the clinic.  They had planned it all in advance, so I walked out of the clinic to be jumped upon by 2 squealing freaks...  I loved it.

Me in the Middle with 2 of my sisters.

It was not til the next morning when my husband and I looked at each other and asked "What now?"

Who was going to monitor me and make sure I stayed healthy?  That the cancer did not come back?  I had cancer undetected for an estimated 2 did I stop it from happening again?  Where were the MRI's, CT scans and PET scans making sure that I remained cancer free.

I felt like I'd been set adrift on the ocean in a john boat.

I learned "You don't have cancer until you are told you do".  It is not the practice of my clinic to test you out the wazoo.  Their opinion is that it is not a healthy way to live.  They tell us we have "no evidence of disease" (NED) but never that we are "in remission" or that we are "cured".  Because the truth actually one knows they have cancer...until they find out.  I had breast cancer undetected for approximately 2 years before it showed up on a mammogram.  Other's had colon cancer for 10 years before a colonoscopy detects.  You don't have cancer....until you are told that you do.  It's scary but it's how it is.  We cannot live life with a window inside to know what's going on. I've seen families destroyed when their doctor (at other clinics) told them their loved one was "cured" only to find massive metastasis just weeks later.  Cancer is sneaky that way.

For a year I saw my oncologist and  he asked "How do you feel?"  I reported how I felt and he said "Good, see you in 3 months."  Then after 2 years, it switched to every 6 months.  They want you to live your life...not just between tests but live it.  So you are instructed to make notes of pain, persistence and really pay attention to what your body tells you.  You become aware you may still have cancer.  You just don't know it yet.

You learn to walk a razor.

It's in the back of every person who has fought cancer...whether call yourself warrior or survivor, we are aware how 3 words changed our lives.  "You have Cancer" is not something we want to hear again, but it's something we are aware of nearly every waking second.

You can't get a zit in a odd place without wondering if it's cancer.  That odd birthmark you've had for 20 years, has it always been this color?  Have I always had this thickness under my arm?  Have I always had that indentation under my chin?  What is this little lump behind my ear?  And for a second our heart pounds, our eyes sweat and then our mind clears and we's a zit.  You live your life, but you live it "on alert."

Two weeks ago, I removed a new bra that had been irritating my flesh.  I rubbed down the foobies, encouraging the circulation back into them when my finger tips slipped into a small crevice.  It had developed near my armpit during my radiation and was now part of my landscape.  It had been formed by the tissue expander combined with radiation, but it remained after the exchange to implants.  The skin is VERY fragile here so I try to avoid irritating it.  As my fingers moved down the crevice I felt something that made my heart sink.

A lump.

A small pea sized firm lump just under the surface.  I couldn't keep my fingers off it and about 3 hours later...finally admitted to the husband...I found a lump.

So a call to the oncologist directed me to the surgeon and an appointment was made.  I drove to that appointment feeling absolutely sick to my stomach.  I didn't want to believe I had cancer again, but I already had that experience of being have cancer, when you were not expecting to hear it.

My husband met me at the clinic and both of us anxiously waited for the doctor.  His verdict filled us with relief and amusement.  "You're feeling your implant" he told me.

The area I described has very thin skin there.  Radiation had burned it away and it regrew fragile and thin.  The edge of my implant protruded into the thin area and felt very much like a lump.  But it was my implant.  I turned to my side at his instruction, the implant feel away and the lump disappeared. It was not an overgrown lymph node as I feared, and he showed me how deep those would be.  Sheepish, I laughed and relieved, we left.

I must still pay attention.  Check my body over, make note of changes and refuse to take risks.  I'm not going to start tanning or smoking at this point in my life.  I can be both free and responsible.  Once you've had cancer (or any other life threatening illness) you walk a razor of diligence and disregard.  I cannot limit my life with fear of re-occurrence.  I must accept the risk of living without losing the joy.

This is the razor I walk.