Friday, August 31, 2012

I Fought the Tub and the Tub Won

This is a classic "Rosey" story that I was asked many times in the past to republish.  I am now retelling this story for friends who heard it the first time, as well as you who have not.  You have to promise should you meet me in public, no winking, no  Nada.  Nothing.  In deference to my WOW friends - here's your MONITOR WARNING!!  Drinking may be hazardous to your computer.  This story contains PERSONAL information TMI in fact, as well as information about infertility, the marriage bed and downright slap your knee hilarity.

I was around age 39 when one of my best friends had a baby.  I got all caught up with the loveliness of those infant months.  There had been new advances in the treatment of PCOS - Polycystic Ovarian Syndrome, that made me hopeful that perhaps, just maybe, we might conceive a child without fertility drugs.  I talked it over with my husband, despite misgivings on having a baby at his ripe age of 41, he agreed to "make an effort".  lol

As shocking as it may seem to some of you who easily got pregnant  just THINKING ;) about sex..those of us who struggle with infertility have to WORK at getting pregnant.  It meant taking temps first thing in the morning before we dashed to the toilet with a full bladder.  It meant charts, scheduled sex, checking body fluids, and keeping track of what your female body was doing. And more sex.  The facts of life are that while sperm can live up to 4 days in a comfortable environment, the ovum (egg) generally starts losing viability after 12 hours.  By 24 hours after ovulation, the ovum is history.  If you are trying to get pregnant, it is easier to make sure there are plenty of "swimmers in the pool", than it is to watch for ovulation and hope to have sex in that 12 hour window. So this generally means scheduled sex every other day.  Oh joy.

It was on an early spring morning when the alarm went off that I dutifully stuck the thermometer in my mouth and waited for it's digital beep to tell me I was done.  I pulled it out and blinked several times at the thermometer,  the temp was low.  It was really low.

I groaned.  My husband rolled over and asked,"What's wrong."
"My temp," I answered him with the early morning croak, "it's really low."
Then he groaned.  "How low?"  he asked.
"Very low" I answered.
Another groan issued forth from his side of the bed.  "So you're telling me that instead of 20 minutes more of snoozing we have to have sex.  AGAIN?"

I took no offense, I was pretty much on the same page.  The idea of having to get all charged up and ready for sex was just not on my list of priorities for that morning.  You who are scratching their heads, not understanding the significance of the morning temp I will explain in brief terms.

In your early cycle, your estrogen is in control.  Your temp stays lower in those first 14 days or so.  Immediately before ovulation, your baseline morning temp is usually at it's lowest.  Immediately following ovulation, the ruptured follicle begins to manufacture Progesterone.  Progesterone rapidly raises your body temp dramatically usually a full degree or more. If you understand human reproduction, you know sexual intercourse and ejaculation is necessary to create life.  Even when you didn't wanna.  You haffta or you lose another full month.

I sat up in bed, yawned and slipped on my slippers.   I grumpily told Mr. Rosey that I would "go check my cervix, and if it was high, we could skip the morning sex".  So I shuffled off to the bathroom.

Now I need to explain that our home was a 1900's style cottage.  I thought it was adorable, but there were issues.  It was small and it was built before plumbing was INSIDE the home.  All our plumbing had been retrofitted.  Which is fancy words for...they stuck in wherever they could make it work sometime after it was built.  Because the home was not BUILT with a bathroom, the back porch had been closed in and made into one.  Now picture how wide a normal porch is.  Now imagine putting a tub, a sink, a toilet, a space heater, and a water heater into a room that was approximately 4 x 8 inside.  They put the skinniest tub we had ever seen before into that room along the 8 foot side.  On the opposite 8 foot wall there was a toilet crammed into the corner, a gas heater sat on the floor to keep the pipes warm and a sink nearly directly above.  You could literally, (God strike me with lightning should I be lyin') literally sit on the toilet taking care of your morning business, soak your feet and wash your hands all at the same time.  Most people made use of the toilet by sitting sideways, otherwise you had to rest your feet in the tub.  We are talking tiny spaces people!

So I was in the bathroom, which you remember used to be a back porch and was accessed through my son's bedroom.  Yes, you had to walk through his room to use the bathroom, which is why we did not choose that for OUR bedroom. You could also go through the kitchen, through the "laundry room" and to the bathroom from a door on that side.  Most of the time, we went through the son's bedroom.

"Egg white cervical mucous"

For clarification for you fertile Myrtles, when you are ovulating, your cervix opens slightly and drops low into the vagina.  It's God's design for giving sperm the best chance to reaching the golden egg.  At the same time, the cervix creates it's own fluids.  Normally it's a sticky whitish discharge that we commonly know as "feminine discharge."  Lovely, yes I am wrinkling my nose as well.  But at ovulation, this cervical fluid gets runny.  It turns clear and takes on more of an egg white characteristic, which when you think of it, makes sense....ovulating an egg, egg white?  Okay maybe not.

To check your cervical fluid requires you to get up close and personal with your insides.  Usually one uses the longest finger they have and inserts it into their vagina.  You touch your own cervix and if it's high and firm, you are not ovulating.  You can go back to bed.  If you feel a softness similar to your pursed lips and easily reached, then you maybe ovulating soon. You check the consistency of your cervical fluids.  If you have drippy mucous, with a softer cervix, you must go and make whoopee.

(FYI, pregnancy hormones turn that soft cervix becomes soft like an earlobe.)

As you can imagine, when your default body shape is already rather round, the process of touching your own cervix is not as easy as it sounds.  It requires nearly folding oneself in half, head hanging down and the arm wrapped around and snaking up the vagina to reach the cervix.  If I had not been already been addle brained from the need for sleep, I would have immediately concluded that MY cervix was high and out of reach so no further investigation was necessary.  But alas, I was addled.  When I didn't reach the cervix, I bent even further down and reached further to find the elusive cervix.

Yeah, something like this but in a tub, not
quite so white and there were no heels involved.
At that moment, the last poor distressed plastic hinge of the family toilet seat broke free with a groan (we'd been "toilet surfing" for a week) and I was flung head and shoulders first into that skinniest tub ever made.  The racket was tremendous.  I took a precious few seconds to take stock of my situation and my surroundings.  My head and shoulders were wedged in the bottom of the tub sideways, it was rather like trying to stand on your shoulders.   The back of my head was on the bottom of the tub, my chin had forced against my sternum.  My own mammarys and flopped upside my head and cradled my face ever so gently.  I couldn't breath from the pressure of standing on my neck and shoulders.

My feet were on flip side, meaning sticking straight up flailing around trying to find something to prop against.  My bare butt was in the air, my underwear twisted around one leg (I have no idea how I did that.)  But horrors, I realized my finger was still stuck was stuck in my hooha.  I tried to retract aforementioned finger, but my wrist was at such an angle to my body that the finger wanted to pull backwards, which HURT.  So I stopped that attempt.

A tentative knock sounded from the son's side of the door.  "Mom, is that you?  Are you okay?"

It's very difficult to sound nonchalant when your head is stuck in a tub, your butt is in the air, your legs are waving around with a mind of their own, your finger is stuck where it was and your 11 year old son is on the other side of the door.

Wheezing from the pressure on my lungs, I gasped out "Oh, I'm fine son.  I just made a lot of ...noise.  Everything is fine.  Could you uh...go get your father, I might need his assistance for a minute."  I managed to wheeze my answer, but I could hear him still breathing against the crack in the door.

I struggled in the tub.  My arms were stuck between my body and the walls of the skinniest tub ever, and I could not budge them.  I couldn't bring them forward, or backward and until I could move my arms I could not unbend my wrist, so I could get "unstuck".  I suppose in wiggling around I was creating more unseemly noises which further concerned my son.

"Mom!  Are you sure you are okay?  You are making strange noises!"  He rattled the door knob.

"Son!  Do NOT open that door. DO NOT OPEN THAT DOOR!  I'm fine!  Just go tell your dad to come in here."  He continued to rattle the door, "You locked the door mom!"

Yes and thank you Jesus for that last minute thought, or my son would have barged into to "rescue" me and then been forced to burn his eyeballs out after he saw what no son should ever see....his mom wedged upside down with her finger stuck in her hooha.

Fruitlessly I continued to struggle against the sides of the stupid tub.  In trying to find some place for my feet to rest, I knocked something into the floor that made additional racket.  The son stopped fiddling with the door and ran yelling from the room, "Dad come quick.  Mom keeps falling in the bathroom."

I rolled my eyes at his words, my eyes were all that could move as the weight of my airborne backside and legs were wedging me tighter into into the corner of the tub and forcing my chin tighter into my chestbone.  Soon Mr. Rosey was knocking at the door, "Honey are you okay?  James said you fell."

Gritting my teeth to try to move my jaw, as I knew if I did not answer, he would break down the door and my 11 year old son would be tight on his heels, so I ground out the answer.

"I'm fine.  Just fine.  Had a little mishap.  Need your help."  I gasped and wheezed.  Mr. Rosey tried the door knob.  "The door is locked," he called to me.  Again with genius' observations? What was with the men in my home?  Again, I had to hiss, "Go the the kitchen side and DON'T allow the boy to follow you in!"

I continued to wiggle around, succeeded only in knocking something else off the stand at the end of the tub.  It's clatter caused those heavy footsteps to hasten their way through the house.  Meanwhile the boy continued to rattle the door knob on his side and I prayed that unlike anything else in this home, that it would continue to work properly.  I heard my husband making his way through the kitchen door to the "laundry" room.  I imagined shaking my head, (imagined because I could not move it) knowing full well once he got a glimpse of me stuck in that tub - I was not going to live this one down.

He thrust open the door to the bathroom, while exclaiming "What in the world has hap..."

The sight that greeted him stopped him cold in the middle of his sentence and his stride.  His eyes bulged and his mouth hung open as he looked at me wedged in the tub, my legs in the air.  I saw the change come over his face into that stupid grin of pure he drawled out, "aww honey... you started without me."

We did NOT have another child.

Wednesday, August 29, 2012

Pink Ribbons Post - Scared

Pink Ribbons is a feature series I have started that is posted every Wed.  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.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  This is not current events.  This is me sharing with you from the other side of breast cancer.

July 2010
It is very comforting that I have all my friends praying for me. 

I'm trying to think of things I can do now to prepare for this. Anyone know what I should be doing?

I do think I need to find sports bras. I had one good one. Shaking around my brain is some memory that you need to wear tight bras.  I'm going to hate the period of time between mastectomy and reconstruction. Assuming the insurance company lets me do that.  **Update:  by law, insurance companies must assist in reconstruction if you desire it.  Apparently having breasts is a right.  :/ 

I have told my youngest sister. She just had a lumpectomy in May and is under treatment for ca. prevention. Hers was a benign cyst. I thought she needed to know first so she could tell her doctor that her risk just went up. They may decide to be more aggressive.  I chickened out.  I told her by text. She's a crier.  I'm a companion crier.   If I see you cry, I lose it.  I knew we'd never get past "I have cancer" if I actually spoke to her. :/  There is a lot of resources online on how to tell your family, spouse and children.  KJ was with me so he figured it out before I said a word.

My younger sister knows that I plan to tell mom after I see the surgeon. She offered to tell mom if I can't get there before I have surgery. I so don't want to tell her.  Mom had breast cancer twice.  The first time, she had radiation.  The second time was not long after my "big fall".  I wasn't up and about yet.  She had a double mastectomy that time.  She is dying of liver failure.  Her liver doctor believes that Tamoxifen destroyed her liver.  There was never any blood work drawn (by her oncologist) to see how well her liver was doing.  Her cancer doctor waved off the discussion telling mom it had nothing to do with anything at all.  The liver specialist is adamant that this is what caused mom's NASH syndrome.  (Non Alcoholic Scoliosing Hepatitis.)  Mom is in the end stages of liver failure now, dying because of her cancer TREATMENT.

I'm having a pelvic ultrasound at 3 pm. I really need my aches and pains to be related to ovulation and menstruation.  I don't know I can handle hearing again "there's something we need to take a closer look on".

That's the irony. I'd asked to have a pelvic ultrasound every other year. This summer I started having pelvic aches on one side or the other. It usually showed up at ovulation or a couple days before AF. But it was time to get this checked. The breast exam was a second thought...well while you are scheduling the pelvic, let’s do the mammy.  I'm very nervous.  The pelvic discomfort is why I started all this.  I guess I should be grateful.  I just cannot muster up any gratitude right now.  I'm mad at God and don't want to speak to Him right now.

Called my doctor yesterday and asked for a script for Atavan while I go through these things. I'm very anxious. So I will be taking one beforehand.  I took one before bed last night. It's the lowest dose. I couldn't tell it did anything. But we will see. I need them to let KJ into the exam with me. I will cry and plead for compassion if they say no. Not to be manipulative but because I'm holding it together, but only just.

James is off today. So Kel feels after this appointment we need to swing by there and tell him. Pray for him....and me to get through this. 

Those of you who have ordered pink bracelets, I'm honored you'd wear the bracelet for me. I will look for one too so it will encourage me to speak up and encourage women to schedule their mammy regularly. I used to do it every April. Then it got to just "sometime this year. So in '08 I goofed around and got it done in Nov/ Dec '08. Then last Dec, the wheels came off KJs job and we were stressed and I kept saying this winter. I'll do it this winter. That was this last winter.  So here its 7 months later than it should have been.

I just found a metric ruler and I find a cm is not as small as I thought. It's darn near a half inch! I kick myself and think it’s my own fault that it's spread to the lymphs. I let it grow. In my defense, I did do self-exams and always thought you would be able to feel any tumor. Apparently if it's at the back of the breast tissue you won't feel it until its way bigger. She did tell me I wouldn't have detected it for 2 more years’ cuz of where it's at.  I learned later that one of the stages of coping with a cancer diagnosis is fear and then guilt.  I guess I can check those off my list.

So everyone over 40...promise me you will get your mammy done.

Have I mentioned how scared I am?  Kelly doesn't want me to talk about my fears.  I think it freaks him out to consider the worst case scenario.


 Fighting Cancer is harder when 
you aren't allowed to be real about your feelings

Links to Previous Pink Ribbons posts

Tuesday, August 28, 2012

The Sum of Who You Are

Your past molds who you are, it shapes the person you become. It grows things...good things like compassion, patience, acceptance, perseverance.

Your past does not DEFINE who you are. Not if you refuse to accept it. 

I hate the terms victim or survivor. I am a cancer warrior, not just a survivor 
who has hung up the sword. 

I am not a victim nor a survivor of my past. 
Abuse, neglect, abandonment, poverty, illness, disease, relationships, disappointments,pain...
God has used those to make me strong.
He has REDEEMED all the pain and turned the ashes of my life into works of Beauty.

I have fought with the past and conquered it.
I fight in the present, to not fall in the battle. 

I ROAR! I am more than the sum of my past!!

 Don't you see, you planned evil against me but God used those same plans for my good, as you see all around you right now—life for many people.
Genesis 50:20 (The Message)

Wednesday, August 22, 2012

Pink Ribbons Post - Am I Going To Die?

Pink Ribbons is a featured series of my blog about my journey with Breast Cancer.  
At the bottom of the page, you will find the links to the other posts.  
I am currently "No Evidence of Disease" (NED)

 I got the results from the biopsy.  They confirmed cancer, I have it in the lymph nodes already.  The Radiologist called yesterday to tell me herself.  Hearing 'you have cancer' takes the wind out of you.  When she told me it was in the lymph system, I started to shake.   I dropped the cell phone and KJ thanked her for calling so quickly.  She told him I needed to schedule an appointment as soon as possible with a surgeon.  I remember a keening kind of cry and then I started rocking back and forth, sobbing.  Kelly wrapped his arms around me.  He took today off for this very reason.  I clung to him, while he assured me that he will be going through this right beside me.  He told me, You don't have to do this alone but you have to fight this.  To think that my mom and my dad and my lovely aunt Doris all heard those same words.

I kept thinking "I'm going to die.  People in my family don't just get cancer.  They die from cancer.

Actual post of 7/29/2010 to my WOW girls

Oh my dear friends. I know this upsets your apple carts too. Though only a few of us have met in person, we have shared so much in our lives with each other. I am fine with anyone sharing this with prayer partners or women’s groups. I think it hits close to home for everyone with breasts.

I had no idea there was any issue with the boobs. I do self-breast exams nearly every shower. The radiologist said without the mammogram I would not have felt this tumor for at least two more years. By the time I would know there was a could have been all around the body. This mammy, allows me to get this treated before it is throughout the body. 

I'm having a pelvic ultrasound tomorrow. That one scares me. I was supposed to have gotten it done in May but the hospital says they never got the order. They called this morning and KJ told me we need to know if there are any ovarian issues before talking to the surgeon. *gulp* He's right. But IF I had breast AND ovarian ca...Just pour me into a rubber room.

Several people have texted today and offered to drive me to appointments and one friend has offered to leave us her extra vehicle for weeks, if I have clusters of appointments. 

We will be working to get the house all cleaned up this weekend. I came home from moms, it was cluttered. With days of in and out, it looks like a laundry and paper bomb went off in it. Have you ever questioned...if I died in an accident today what would people find in my house? blech not a pretty sight. I just look around when leaving sometimes and hope I get back to pull that underwear off the ceiling fan.  Not that I have underwear on the ceiling fan here...I don't have ceiling fans.  lol  

The surgeon's visit is next Monday at 10 am. This is a 'new to me' doctor. My old surgeon doesn't "do" breasts anymore but said he would do my surgery because I'm a former patient. His first appointment wasn't until the 19th of August and no way could we wait till then. KJ's mantra is…get it out, get it out! So I opted for another surgeon and just took the one available. His name is Etters. I don't know anything about him. But his nurse, Mandy called me to get some information. She was amazing and very reassuring.  She's working on scheduling all the tests now.

Monday, August 2, 2010 - Got a call a little while ago that Dr. Etters wouldn't be available for my 3 pm appointment today. He found out he had OR on call. So he told them to reschedule me first pick as "she is a young woman with new cancer so I know she's scared. Schedule her first over the returns." He may have just won my heart with that comment. :) You know how everyone falls for their OB? I wonder if the same thing happens with a surgeon. 

Fighting Cancer is hard when 
you’re afraid you’re going to die.

Recommended Resource - 
Navigating Breast Cancer
Lillie D. Shockney, RN, BS, MAS

Administrative Director
John Hopkins Avon Foundation Breast Center

University Distinguished Service Associate Professor of Breast Cancer
John Hopkins University School of Medicine
Department of Surgery, Gynecology & Obstetrics

Associate Professor 
John Hopkins School of Nursing
Baltimore, MD

Breast Cancer Survivor

Pink Ribbons Links:
#4  Scared
#3  This page
#2  When They Tell You Have Cancer
#1  The day They Said Cancer.

Tuesday, August 21, 2012

Rambling Rosey

This is a little weird for me because I'm starting here with nothing really intent to say.  I just had some friends tell me they would like me to write "off the cuff" periodically because sometimes I strike my inner diva, or inner genius when I do that.  I figure if nothing else I will use these times to feature someone else's photography.  I love my bird friends.

Photo courtesy of Tracy Andreassen (my cousin)

So I have decided to tell you about something new I'm doing.  I am seeing a chiropractor.  Dr.  Bryce has been thoughtful and sweet to me.  I had been resistant to seeing a Chiro since I was old enough to say the word.  My parents didn't think much of them, and why should I.  But I have had a number of issues with my spine.  They used a cool doohickey that measure heat radiated from nerves off the spine.  APPARENTLY, your nerves are not supposed to radiate heat, but will when they are angry and irritated.  I was able to watch it show up on the computer screen as the doohickey was rolled down my back.  My nerves showed themselves to be throwing quite the fit.  The first time he went over it with me, it was like a yearbook.

Not me in the photo the thermal scanner
was like this one.

Yes doctor, that area between my shoulder blades?  That happened in 1985, that low back issue happened in 2002 and this one here in my why I came to see you.

In 1985,  I was moving furniture by myself and steam cleaning carpet when something pulled in that region.  The pain took my breath away.  I went to the Navy clinic and they sent me home with muscle relaxers.  

In 2002, I fell "water skiing" in the basement.  I shared that story on this blog 2 days ago.  I nearly had to have surgery for that disaster.  (Click the underlined water skiing for the link back to this story.)

And now this neck thing with a pinched nerve that sent pain skittering down my arm from the shoulder to the hand had driven me to seek a doctor that might try to FIX the problem rather than Medicate the problem.  So I went to the Chiropractor I met 10 years ago while painting the walls of the local Maternity home before it's grand opening.  Within a couple days, he had stopped the pain shooting down.  We are still dealing with nerve tingling in my hand but a new graphy thingy shows the muscles in my neck are less inflamed as is the nerves in my low back where the muscles are MORE inflamed.  

Six weeks ago I met with Dr. Bryce on my way to the hospital for surgery.  The time table for breast reconstruction had been sped up by a leak, so I was getting one last adjustment before being home bound for a couple weeks.  I can't tell you how moved I was when he asked if he could pray for me and my surgeon before I left.  When was the last time I had a doctor pray for my surgery or surgeon?  Uh...never.

So today, enters a new routine - rehab.  The lovely Jennifer gets on the floor with me and does these stretches WITH me to make sure I'm doing them well.  I do some reaches and some kind of twists and then some kind of knee lifting, back rolling squishing the gut kind of exercise.  I'm on my back with my knees up as close to my belly as they will go and my belly rumbles.  I'm all scrunched up and I'm praying, "Good Lord, don't let me fart in this position!"  Then the next thought was, "Oh heavens Lord, if something has to break loose, please make it JUST a fart!!"

Something like these but I wasn't nearly as cute doing it...or as good at it.

With gratitude, I was able to lower my legs and get up without losing any more dignity.  And then I came on home and started working on the mountain of dirty dishes.  Course the first thing was to go from room to room rounding UP the dirty dishes.  I have no clue how they wind up everywhere but the kitchen.

Since I told you about my Chiropractor, it seems only right to give him 
and his team a real introduction.  
Meet Dr. Bryce Koelling of Fulton Missouri.

Monday, August 20, 2012

How Can I Help You Through This?

“Tell me again,” she asked, “how do I ask someone to let me help them when they are in crisis mode?”  This was a message from my sister asking to me relay to her my observations about giving and accepting assistance for those in need.  Hers is a friend battling a quickly growing cancer, and she wants to help.  It occurs to me that others might find this helpful.

I am a Pink Warrior who has done the chemo, the surgeries, the radiation and now a series of reconstructions.  As a person in crisis, I can assure you we quickly discern who really wants to help and who really does not, but just wants to feel good about offering.

We hear the generic “Let me know if there’s something I can do” as someone quickly hustles away before we can stop them.  They didn't stick around for an answer.  We learn this really means, “Oh sweet Lord, please don’t let her ask me do anything!”  In truth, your mind is numbed and confused.  We do not know what we need, or how to ask for help.   
At the beginning of my cancer battles, I returned home from a chemo class with my mind reeling from all the facts.  I was emotionally spent.  I looked at my yard and realized it needed mowing.  It was not going to happen anytime soon.   So I wandered across the street to my landlady’s home and knocked.  I managed to share with her that I had breast cancer, would be having surgery in 2 days to put in a port, and I would be starting chemo in 10 days.  She took my hands, looked me in the eyes and said, “Tell me what I can do to make this easier for you.”  

Immediately my eyes filled with tears at the beauty of her words, and I blubbered my way into her kitchen.  I only asked for a little grace in keeping the yard mowed.  Between my chemo, my husband’s disabilities and no family in the immediate area, I knew mowing weekly as was my habit was not likely to happen.  She shook her head, and told me, “My boys will keep your yard mowed and trimmed.  You concentrate on getting through this.”  And then she listed several other things she was willing to do.  

Later that day, I reflected over that experience, I realized how my neighbor/landlady’s offer was easy to accept.  She made specific offers and I was able to consider them.    It taught me there was a right way and a wrong way to offer to help.  It helped me identify those who were willing and able to help.   Then also to identify those who meant well, but weren't really available.  It led me to these suggestions on how to offer assistance to friends in need.  Some of these things I had offered to me, and some I wish I had.  :)

    *Before you ever mention anything to your friend, consider what you have the time to do, the energy, the ability, and the willingness to do.  Draw your own boundaries.  If you can’t deal with body fluids, you won’t be able to help her change dressings for her.

    *Make your offer personally, whether by visit, phone call or note card.  When in person, try to arrange to speak somewhere quiet.  The the church foyer, or the school carpool lane may be convenient for you, but it hard for that person in need to concentrate amid the chaos. Their brain is already overrun with chaos.

    *Share with them that you want to help in specific ways. 

You can volunteer to drive them to appointments with 48 hour notice.

 If you are available on shorter notice let them know that.  I quickly learned when you have multiple appointments, arrangements can fall through and you need a backup plan.

You want to bring a meal in once a week

Even when people don't share an immediate need for mealtime assistance.  Trust me, it's appreciated to get the random  call in the morning that tells you, "Don't think about dinner tonight, I'm bringing it."  I call it Respite Care, which is the unexpected relief of daily responsibilities.  Hint*  Always mark the containers or dishes with your name.   I thought I would remember every kind soul who provided us with meals.  But I can't tell you how many times I held a casserole dish and had no clue which of those 7 people brought it.  If you want disposable containers back, mark them as well so we know to return them.
You can watch little ones during appointments.  
SUCH a challenge for people with "littles".

You can run errands for them.  

You are willing to vacuum (clean the kitchen or bathroom) once a week.  

Offer to assist THEM in doing these things.  My husband did not find changing the sheets regularly as important as I did.  But I had to have help doing so.

You will do their laundry.

Suggest they do their own underthings, trust me it makes a big difference in accepting laundry help when you know they won't be washing your personal items.

Send a child over to drag their trash can to the street and return it after it’s been emptied.  

This is nice for elderly neighbors, or those with permanent handicap. 

Drop off unexpected treats to them.  

Whether it's a tray of cookies or a movie DVD, it's a break in the sameness of each day of illness or recovery. It's encouraging to know that someone randomly thought of you and wanted to bless you.  *With movies please advice them if there's a return date and time.  Better yet, tell them when you will be back to get the movie to return it.  If it's a personal dvd then let them know there's no rush to view it, and when they can return it.  A movie and a box of microwave popcorn is a joy for a household of "littles."

Recruit other friends, classmates, Bible study companions to sign up for various chores so everything needed is covered.  

Together decide how to divide the responsibilities, and then appoint one person to serve as the "communication link" between the team of helpers and the person in need.  My pastor’s wife organized meals for my “chemo week”.  She gave me a list of volunteers who were bringing meals or giving gift cards so I knew who to expect and when.  I was able to tell her what foods was not working with my chemo and what food I was desperately craving (anything banana).    

Consider other members of the family affected.  
Including something meaningful to them is always appreciated and it brings joy to the person in need.

Don't assume that someone going through extended illness, treatments,  recovery, hospitalization wants to get out of the house with you.  I felt so bad turning down an offer from someone who wanted to take me out for an ice cream treat.  I was too exhausted to chew, much less make an effort to dress for public, then make a trip out and back.  I would have rather she just brought me the ice cream.  Please don't be offended if someone is just too tired to go out to dinner with you.  But it's fine to ask.  Particularly adults who are camping in hospital waiting rooms, often need time away to eat, shower and just decompress a bit.

If you aren't able to offer physical assistance, know that cards, music, novels and magazines are appreciated.  One of my sisters  flooded me with cards that touched and others that made me laugh.  Laughter in recovery and illness is important as well.  Not everything has to be "spiritually oriented."  A good ole belly laugh cleansed the soul as well.

Yes, those were my nails, 
responding to the nail hardeners.

Because I was concerned about losing my fingernails, long distance friends mailed bottles of nail hardening nail polishes in various colors of rose and pink.  It delighted me every. single. time.  

Another friend sent me a tea cup tucked among soft knit chemo hats.  She wrote that she had a matching cup and we could imagine sharing a cuppa tea with each other when we used our tea cups.  It made me happy but I also bawled for 30 minutes from the sweetness of her gesture. (sniff)     
     It is okay to make the occasional visit when you call first to find out if they are feeling well enough.  But keep visits under 20 minutes.  Getting overtired from lingering visitors brings a special kind of fatigue that does not sit well on the stomach.  Been there, don't want to do that again.

And hugs are good.  Hugs are always good.  Just be cautious of healing incisions or body trauma.

Even if we say no to your first offer, ask again later on.  When we are weary from the struggle of trying to juggle all the things we thought we could do, the enormity of our situation now faces us down; we are more likely run up the white flag of surrender and accept your loving assistance.

Saturday, August 18, 2012

The Great Fall of 2002

The Great Fall actually happened on August 18, 2002, 10 years ago today.  My 10 year anniversary,  the Great fall was not a season but an event in my life.

That morning did not start well.  My husband had gone to 6 Flags as a chaperon the day before with a group of teens.  He left with the sniffles and a draggy feeling and returned about 1 - 2 am with a fever and chills.  He was sick.  I had expected him to stay home but because the rule is that teens who attend Sat. night activities MUST be in services Sunday Morning.  He said the rule applied to him as well.   I went to the basement to throw a shirt into the dryer for de-wrinkling.

Important to this story is that it was storming.  Our communities received 8 inches of rain in 60 minutes.  Water was standing everywhere, the storm drains were unable to handle the sudden downpour.  As I walked down the stairs, I noted that water was pouring into the basement down the walls, in through windows,from under the walk out door, and as I walked to the dryer, I saw water bubbling up the floor drain.  By the time I got to the dryer, I noticed the dryer was standing in water about an inch deep.  I'm sure it was God's intervention but as I reached for the dryer knob, I stopped.  I looked at the knob and the standing water and thought...hmmm electricity and standing water is not a good combination.  I turned to walk back and was calling my husband to "come look at this."  (EMT's would later tell us of a woman electrocuted in town because she turned on the dryer standing in water.)

photo courtesy of Lapans Waterproofing.
The water standing in OUR basement was over the ankles.
By the time I neared the bottom of the stairs the water had risen so rapidly in the basement that it was over my ankles.  I was about 4 feet from the stair when my left foot slid.  It slid out in front of me, so I tried to control the slide by flexing my thigh.  I felt a series of rubber band snaps in my knee and lower leg with pain.  I lost all control then swiftly landed on my bottom in the water. My left leg in front of me and my right somewhere behind me.  It was a hard landing that brought instant excruciating pain down my leg.  I screamed.

I'm told it was a blood chilling scream.  The pain was intensifying and again I screamed.  KJ flew down the staircase to see me lying on the ground in a good 8 inches of water while clutching my knee and moaning.  It hurt too much to cry.  He got mad for a minute.  Why was I trudging through the water in my slippers?  Why wasn't I more careful?  But his fussing did not disguise his concern.  He had never heard me scream like that.  I explained the slip, the snaps and now the pain that was running fire from my hip to my toes.    I tried to move my leg and found that I could lift it using my quadriceps, but the knee was already swollen and I could not move my foot at all.  We attempted to get up which caused the muscles in the back of my thigh to burn with such intensity, that I finally told him I needed to go to the ER.  I could not move and not really knowing what was wrong, he called for an ambulance.

The EMT would not accept that my entire leg was on fire, so I told him my hip was hurting.  It was.  I had just crashed down on it.  As he ran his hands along my knee and leg, I could only think how glad I was that I had shaved the legs the night before.  At the ER, it seemed my knee was more painful.  Until they told me it was time to leave and to get out of bed.  When I tried to move that leg, the pain shot through the back of the thigh, hamstrings - burning again so painfully that I yelled out in pain and told them I couldn't handle it.  More xrays were given, a script for pain meds and I was sent home with instructions to call someone about that knee.

It was with much sweating, crying, and the intense need to swear from pain I experienced trying to get into the house from the car.  Every hop on the right leg jarred the left.  I fell into an exhausted and medicated nap.  But I woke to intense pain in the leg again.  We could see the knee was hugely swollen and I still could not move my foot.  We still did not know why, the first ER wouldn't even listen to me tell them I couldn't lift my foot.  We decided to go to the ER where my primary doctor is and see if they could tell us more.    Out the door again with the pain, sweating, crying and need to swear as KJ helped me slide into the back seat to keep my leg straight.  Bending it caused too much pain.

This time when we left the ER, I had a consultation with an orthopedic knee  surgeon.  We knew the knee was messed up but so was the lower leg.  That ER used the words, "Peroneal nerve damage".

Over the next several weeks of scans and tests, we would learn that in this fall I had torn the LCL and ACL ligaments in the knee.  But also that I herniated a disc at L5/S1 that apparently punched the Sciatic nerve and seriously damaged my peroneal nerve bundle.  My left leg was paralyzed from the knee down, I had nerves to the bladder that were damaged.  The nerves to the foot were nearly non existent.  My hamstrings were like jelly.  2 months later, the nerves to the bladder miraculously healed and I did not require surgery to repair them.  I never had back pain in the fall, it was all felt in the leg.  When ER people kept asking where it hurt most...I answered my whole leg.  They would not accept that answer.  I learned from the neurologist this was common to nerve damage.  The entire limb will burn, sting and zing, not just a part.  But I didn't complain of back pain so they weren't looking for nerve or back issues.  I didn't have back pain until many months after this fall.

My skin had no innervation so I had no sensation to touch.  But developed a syndrome where light touches felt like razor blades.  A doctor's lab coat brushed my foot, I shrieked and jerked away.  The EMG would confirm this was a problem at the nerve level, and recommended steady pressure on the foot. Pressure did not cause the razor blades, the light touch or brushes did.  I had serious Foot Drop, the limp fish reaction of a foot with no innervation.

Articulating AFO,
a unique spring hinge in the brace would snap my foot up when pressure was relieved.
When taking a step and lifting to swing forward,
It kept the foot from dragging the ground and kept the ankle from rolling.
I learned to walk in a knee brace as well as an AFO (ankle/foot/orthotic).  I graduated from a walker to crutches to a cane.  I decided if I had to use a cane, it would be a pretty cane!  I got a brass handled, maple wood cane.  No metal granny cane was going to do it for me.  That Christmas I wrapped pine greenery and battery operated lights around the cane and tied a big red bow at it's top.  You don't have to accept only function, you can create form as well.

I was in physical therapy for a year, trying to learn to walk with only 2 knee ligaments and to rehab and repair the back.  The back surgeon did not want to do back surgery once the bladder nerves healed enough for me to control it's function.  His comment to us was "Once we start operating on the spine, it has to be done over and over."

It was about 8 months later that the orthopedic doctors told me the nerve damage was permanent.  If there had been no improvement by then, there was going to be none.  They applied electrical currents to my calf muscles and nothing happened, the calf muscle was atrophying (shrinking).

It was in 2004 that I went to the orthopedic doctor again for a check up of my still unrepaired knee.  I told the medical staff that I had been working and wanted to show them the tricks I could do tricks.  They came in and stared at my foot.  I showed them I could dorsi-flex (raise up) the foot for the first time.  I had even worked and learned to abduct the foot (move it away from the body center).  They were duly impressed,  ohhing and the ordering more tests.  The doctor told me that while he thought this was permanent damage every so often God shows him that HE is the better doctor.  Then they learned something amazing.

My leg nerves were still dead.  The EMG showed no muscle reactions to electric impulses. The big calf muscle (the gastrocnemius) was still immobile. Further tests showed that the small muscles called "auxiliary muscles" in the calf had "supersized" themselves and were now moving my foot.  My therapists were amazed by this development, they had not seen this happen before.  My surgeon told me to take off the AFO and begin trying to walk without the brace.  It took practice to learn how to raise my foot and swing it forward without tripping.   In time, I would be "mostly" successful in this and preventing repetitive "face plants".

As I stated, today is the 10 year anniversary of the date I fell. A former pastor referred to it as "water skiing" in the basement.  I still limp.  I can't just walk into a store and buy shoes.  People don't understand how all those tiny nerves work together.  When you walk in sandals, you instinctively raised your toes to keep the shoe in place.  I can't raise my toes.  So my sandals have to be strappy and fixed in place.  I cannot wear flip flops of any kind.  I can't instinctively create the suction on the sole so in flops, when I swing my foot forward to walk, I swing the shoe off my foot.  I learned that without nerves in your toes, you can't scrunch your toes to keep them from sliding on tile floors.  The first time I tried to sit on a toilet (as opposed to lay across one with my leg extended) I couldn't keep my foot from sliding on the tile.  I saw that my right foot toes were scrunched - thus gripping the floor.  I had no clue I did that.

My left foot tends to "slap" the floor as I walk, and I trip up because when those calf muscles tire, the toes tend to drag.  I stumble frequently when those little muscles tires of doing the BIG job of moving my foot up and down.  And with the loss of the two knee ligaments, I have taken several additional big falls.  One busted up my elbow that had to be surgically repaired.  The others just required a few days of rest and I was back to my routines.  My disc is better, but pressure from standing for very long causes pain at the sciatic nerve to radiate to the foot.  The damage is still there, and when those muscles and nerves tire, they fail.

But here I am today, me who was told I'd never walk without braces and canes is walking without braces.  I still use a cane for stability due to the occasional stumble.  I have several canes, including a clear one I can fill with various objects that strike my fancy and fit.  I filled it with pearls and crystals for James and Mandy's wedding.  :)  But to God be the glory.  I am still upright!

Wednesday, August 15, 2012

Pink Ribbons post - When They Tell You, You Have Cancer

Pink Ribbons is a featured series of my blog about my journey with Breast Cancer.  
At the bottom of the page, you will find the links to the other posts.  
I am currently "No Evidence of Disease" (NED)


Rosey's Story

I can't describe the buzz that begins in your head when a tech tells you to come to the ultrasound room. "There is something we want to investigate." I was here for a routine mammogram! This was not how it is supposed to go!   She was supposed to come out and tell me it was okay to go on home!

I laid on that table in total disbelief. I remember looking away, asking 

"God...really? Are you sure about this? 
Do I really have to do this?" 

And then my next thought was about my husband. He's out there waiting for me and it's already been considerably longer than expected. I asked them to go out and tell him I was having more tests. They did but it turned out they alarmed him even more, because they would not tell him what was going on. "She is having more tests" is all they would tell him.

We are a single vehicle family. I am a home maker. He has a new position at the Hospital where he works. It's a stressful position and he has new hours. 8 - 4:30 doesn't leave a lot of room for scheduling appointments. So even though this date, is our 31st wedding anniversary; I had scheduled an appointment for a routine mammogram.

Still I told myself they are just being cautious. This was not really happening.  I struggled to hold myself together. Just a few moments into the ultrasound the Radiologist came in and told me "I am certain this is cancer. It is ductal carcinoma." 

And just that quickly she changed my life. 

In that moment, something in me gave way, like the way the ocean waves dissolve the sand castle.  There was a kind of shift where denial is left behind and you face a different future with a cold sweaty, absolute horror. You are facing the Unknown. It made me shiver.

She turns to me and speaks, "I'm here now and I can do a biopsy right now and get that out of the way or you can go home and schedule a biopsy at another time." My blood went solid. I tried to speak. My throat is so dry. I cleared my throat and tried again.

"Are we talking about a needle biopsy?"

She nods and tells me "We can do this now, so you have a final answer. I am certain this is cancer, but I understand that you need the confirmation. But if you would rather, you can schedule to come back to have it done later in the week."

"NO!" my mind screams. The idea of waiting around with this THING inside me, is something that makes me shake. "Where is my husband? I want my husband." They told me that men are not permitted back out of respect for the other women. I nodded because I think that's what I'm supposed to do. But this sucks.  I am alone and trying so hard not to panic, not to come unglued.  The technician gently takes my hand and squeezes. Tears drip from my eyes, collecting in my ears.

I know what KJ's answer would be. He would tell me to get the biopsy now. So I tell them, "Go ahead." Then I ask them to please send someone to let him know that we are now doing a biopsy. They do. But when he asks, why? They won't tell him. He told me later that he knew then. I wouldn't have sent someone out to him, if it was something normal.  So unknown to me, he sent out a panicked prayer request by texting our pastor Jason and his wife Marcia. "Pray for Tina. She was having a routine mammogram today. But she's been back there over an hour and they keep coming out to tell me they are doing more. They won't tell me what is going on. So please, pray."

I turn my head away as the Radiologist takes her position. She explains that this biopsy tool looks similar to a large syringe. The needle is large, a 16 gauge needle. I cringe. I know what that means. It is a huge needle. She explains that I will feel a pinch, then a sting. She will cut a tiny incision to insert the needle. "Whew," I told her. "I wondered how you would get that garden hose through my skin" She pats my arm and knows what I know. I'm just trying to be brave. I'm willing myself not to panic. I'm trying to cope with humor. I tell myself just one breath at a time. In and out...concentrate on breathing.

"Really God?" Are you serious? 
Have I not dealt with enough in my life?"

The room is suddenly freezing. I started actively shivering. The hard surface I'm lying on isn't helping my herniated disc, but I barely acknowledge the muscle spasm. The room is silent but for the soft whir of the ultrasound machine. There's the pinch and the sting. I can't believe this is actually happening to me. Now I understand the concept of living through a nightmare.

As she takes the biopsy, the device makes a snapping sound that makes me jump. "I will take a biopsy from two positions on this tumor. It is a small tumor, Tina. You caught it early." She adjusts the instrument. Another snap and another jump. "Tina, you will need to make an appointment with a surgeon. Do you have a surgeon?" Have a surgeon? Does everyone have a surgeon in their contact list. It so happened I did. "Dr. Pitt did my lap band."

"Oh, He is an excellent doctor. You are in good hands. He's a wonderful breast surgeon." Despite my resolve to maintain some dignity, a tear rolls down my face. I have to hold things together. I want things to slow down. I can't believe I'm now talking about surgery. She is STILL talking. "If there is no involvement of the lymph nodes, you can have a lumpectomy. If there is involvement of the nodes...well he will go over your options." Silently I tell her, there will be no lumpectomy. These breasts have betrayed me.  In 2005, I had a cancer risk assessment done.  Because mom was negative for BRCA 1 & 2, I was told I was at no more risk than the general public.  Now I feel anger. I could have had mastectomies before I got cancer.  The question crowding my mind is "how much cancer do I have?"   I already know, I will choose a bilateral mastectomy.  I won't go through this again.

The Radiologist is speaking again. I strain to hear her over the machines. "Tina, there are 2 lymph nodes that are a little large. Not grossly large, they are just on the big side of normal. But since I am right here, I am going to take biopsies of them too." I nod that I understand and continue to instruct myself to breathe. Two more snaps and a jump. 

I cannot prepare myself for those snaps.

Dr. Radiologist is speaking again. I shake my head trying to shake loose the buzzing in my ears. The room has become so loud and hot. The buzzing lifts an instant and I hear her. She's been talking so I catch mid-sentence..."Steri-strips over the incisions. They will come off on their own. Take it easy tonight. I'm giving you an ice pack to use for the drive home. Let your husband drive. Take Ibuprofen for the pain. If you develop redness, swelling or fever, call this department immediately and they will page me." Again I nod that I understand while my voice hoarsely answers, "OK."

They help me sit upright on the table. Gravity hits my head, and the buzzing is back. My mind cannot focus. I am struck with irony as I pick up my bra to dress. I just bought this bra yesterday. Pink with hot pink and yellow lipstick kiss marks all around. It was a fun bra. Now I stare it blankly. 

The fun has been drained away.

My knees are weak as I headed for the door. I stagger slightly and walk out of that chamber of horror. As I walk down the hallway toward the waiting room where Kelly sits, I stiffen my spine. I fight back tears. I have to explain what happened. I have to be strong for him. I just walked the longest hallway in the hospital. I tell myself how relieved I am that we celebrated the day before, because I just ruined our 31st anniversary.

I open the door to the waiting room and I see my husband jump to his feet. Just seeing him there breaks my resolve. We are alone in the room. Tears break forth and stream down my face, despite my determination that I will not cry. I fought the urge to run to him. As I move closer to him, he is shaking his head as he says, "They found something didn't they?"   It was not a question.  I had lost my ability to speak. He swept me into his arms and buried my head into his shoulder. And I sob.  His touch had melted my resolve to hold it together. He is an anchor in the rapids swirling around me.

I honestly don't know whether he was crying too or just stunned into silence. His voice shook as he directed me to the door and out to the truck. I think we are letting go of what once was. But I know whatever happens. I won't be facing it alone.

Fighting Cancer is hard 
when you just found out you have it

This is an ongoing special feature of my journey through Breast Cancer.  I was diagnosed on 7.27.2010 and am currently NED (No Evidence of Disease).
Link to next Pink Ribbons post -
#4   Scared
#2  This page