My cancer saga started when I was diagnosed at 38 with Invasive Ductal Carcinoma. I have a twisted sense of humor and have tried to continue that laughter and optimism on my journey...

Thursday, February 12, 2015

smile... in the good and the bad

Episode CIX - Show me how big your brave is


Unexpected surprises and exciting things can happen!

Even in the midst of my crazy life, I had some very positive things going on. I was contacted by a person about my artwork. Seriously. Someone who reads my blog wanted to purchase some of my artwork for a cancer charity, Sparrow's Nest. I was honored... excited... I was down-right happy!!!!


A cancer agency that cooks and delivers
meals to the families of moms with cancer
learn about Sparrow's Nest, click here


It is amazing to think that through my blog and cancer experience, a woman found me and was willing to support me in an unexpected way. I have never tried to sell my artwork until recently and now my very first sell would be hanging with people taking care of other cancer fighters. I love it!

Never in my wildest dreams did I think that I could be this lucky.


My artwork ready to be shipped...


With the artwork off to New York, I was off to the family doctor. It was time to check in and figure out how my new medication was working on my Fibromyalgia. While I had noticed some small positive affects, I was still living in chronic pain. I was still hopeful for more answers or solutions!


Smoke & Mirrors... Smile & Makeup....
off to the doctor


It is amazing to me that people tell me that I look good or that I do not look sick. Throughout my treatment people thought I looked good for having cancer. Now without my blaring bald head people often say they would never guess I had been ill. Recently, I was even asked if I lost my hair during treatment. If they only knew that I had and it grew back a different color... redder!!!

I hope people will use me as an example. Just because someone does not look sick does not mean they are not sick. There is a lot of judgment towards people appearing well, but having unseen illnesses. Even though I may look healthy, I am a walking time bomb. I am usually doing my normal routine in pain. I refuse to stop going. I am just smiling through it!

The funny thing is that even though I feel horrible, I am happy. I am a happy person. I believe in smiling. I believe in laughing. I believe in having a twinkle in my eye. So, despite my chronic pain, my constant aching body, and my post-cancer-war-torn body... I put on a smile and people notice.




I am choosing to handle pain with grace and strength and a smile. And on days I felt smiling was just too much I opted to stay away from people, other than my family. I still smiled. Even if I cursed (which I have done more profusely than a sailor), even if I cried (which I have done alone and with others), even if I wanted to quit (which I have questioned the idea of living), even in the best and worst moments... I smiled. I joked. I laughed.

Because I am alive. Even in the pain... I am here and I will fight... I will laugh. I will smile.




The fluctuation in weather was definitely causing multiple fibro flares to happen. And flares... well... they are bad. No one had ever discussed what a flare was with me, so I had no idea what one really was. I just knew there were times when I truly felt worse. It was like every part of my body... every symptom becomes more crippling.


Glimpse into what causes a flare, click here.


Basically, I am becoming friendless. The cold is not my friend. The rain is not my friend. The hot is not my friend. Can I just find some low 70 degree weather? Year-round? Without rain? Is that too much to ask?!?!

And since we are discussing fibro flares... stress, over-exertion, weather, lack of sleep, and a bunch of other things can cause a flare. Seriously, if I fart I could have a flare at this point! I live in a constant state of never knowing what to expect... well, other that I hurt!!!

Since I have unrealistic weather and life expectations I better just learn to manage the pain the best way I can. Other than hibernating under my heating blanket, I might need to put flashing hazard lights around me as a warning to keep a safe distance away.




In my head...


Life is full of good and bad. I am just choosing to cherish those good moments...

I was thrilled to have my first artwork purchased (other than a family member). It was hard for me to initially post my artwork online. I think artists tend to be horrible self-promoters, or at least I am. I can always find faults or corrections to any work I create. I live with that art is never finished feeling.

However, the Sparrow's Nest is an amazing organization supporting other cancer fighters. Hopefully those patients will find time to follow their passions and use that to aid in their healing. Find the good!!!

As for the bad, the chronic pain, it is just part of my existence at this point. I have spent almost two years dealing with some type of ailment. I am not sure I even expect it to change, but I am hopeful it will. You would think I could call myself a Master Jedi of Pain now earning a cool light saber and possessing skilled mind control (you will look at my art website and buy something)... it was worth a try...




Episode Reference: Brave, Sara Bareilles song

Monday, February 2, 2015

My Craptacular Adventures

Episode CVIII - it never rains but it pours


Where to even begin?




It was like the past few weeks were jammed packed full of crap. I am not kidding. It was just one horrible thing after another. Of course, I tend to turn horrible into something good in the end, but still it was a stinky couple of weeks...


Sums up my relationship with crappy things...


Craptacular Issue #1 - Bullying

My daughter has had a horrible year at her school this year. She has had multiple bullying issues within her class. Issues range from mild name calling (stupid, fat, ugly), to taking her snacks and food, to more severe issues including being called a “son of a b***h”, "piece of s**t", pushing, scratching, pulling her shirt up in PE, telling her she is too ugly to love, her parents don’t love her, she should not exist, etc.  These issues have been escalating all year.

Did I mention she is in only in the 2nd grade?!?!




I could go on and on about how horrible the situation has been and how sad it is to watch my sweet girl begin to feel worse and worse as the year has progressed. I mean it is not like she has not already gone through enough. She managed to go through my cancer with no issues, but now... now the excessive bullying was breaking her down. So, we did as all good parents do and met with the school.

By the end of the meeting we felt we had been placated. There overall view was that "kids will be kids". We brought in a list of multiple issues with multiple children. While some of the concerns were minor, others were extremely concerning.  The list was meant to show the totality of what she endured this year. We really wanted one child to get help, as the severe bullying needed to stop!

In the meeting they said a number of insulting things including one where they implied her problems could just be reactions to my cancer, like she was now all of the sudden seeking attention. Although we were dissatisfied with the meeting, we still wanted to give the school a chance to improve the situation. We were hopeful despite all of our issues with the meeting. We wanted to be hopeful!

Without knowing what to do I had to rely on the support from some of my friends who also happen to be parents of children at our elementary school. I did not want to start an online debate or issue, I wanted the school to take the time to rectify the bullying problem. I found a few friends and confided in them seeking encouragement, support, and advice.... those poor friends... they should have hung up on me.




Craptastic Issue #2 - The Stroke

It was one of those things you dread as a child, a phone call about your parent. My husband's mother had a stroke during the night. Thank goodness that her partner/husband/man-friend was there to do all of the right things. He knew something was wrong and as soon as possible he called an ambulance.




While we were unsure the severity of the stroke, we knew it was not good. We spent the morning trying to get out of town. It is amazing how long it takes to really get out of town in a hurry. While my husband was leaving work, I was trying to rent a car, pack, contact the schools, pick up the kids, get the rental car, and board the dog. Nothing moved along quickly. I felt like I was in slow motion!

Finally, after hours of very hard work we were ready to leave.


Days in the car with these people...


The trip was going to be long. And I can only make it so far in a car without excruciating pain. We knew it was going to be a two day trip to get there, as it was well over a 14 hour drive. We made our way til the late night, stopped at a hotel, and got back to it first thing the next day. More time in the car with the kids... shoot me!!!

Thank goodness for cell phones and having the ability for instant information. We felt like all the news about his mom was pretty good and even wondered if we jumped the gun and came down unnecessarily. However, we knew we wanted to be there with her and just hoped she was improving.

It was past dinnertime when we arrived and my husband went to the hospital to check out the situation before we took the kids. I took the hotel shuttle downtown to eat at a local restaurant and keep us all distracted.


Late night dinner with these tired and worried kiddos.


By the time we got back to the hotel, I noticed my body was not used to the Florida heat. Along with some swelling... I got a crazy insane hot flash...


 
Having to cool off back in the room!!!


While we were at dinner my husband was dealing with his mother's dramatic turn for the worse. She was having a brain bleed. She was moved to ICU. We arrived just in time for him to be there to help support her through the very critical next few days. It was so scary. It was so horrible.

Then she began making slight improvements. We were so grateful for that. She improved enough that the kids were able to visit. They loved visiting her at the hospital. I honestly believe that those smiling youthful faces were encouraging... well, when they are behaving!!!

And during the times she needed rest or therapy or a break from our loud obnoxious energy, we made our way around Fort Myers. Touring local historical sites and eating at interesting places. The kids needed distractions from the seriousness of it all too.

It seems I have become an expert in finding happy moments in the midst of crazy!!


Ford & Edison Winter Estates & Ford Garage Resturant


After a week, we had to go home. There was no good time to leave. There was no easy way to leave a family member ill. However, we had to make our way back home. We were so grateful to see that she was surrounded by people who were able to support her. She had many friends there that would be willing to help and that made leaving slightly easier.

Plus, we had to make that long trip back home...


A very brief stop to Busch Gardens Tampa.


On our way back we took a quick detour into Busch Gardens. With all my ailments (and trust me I was hurting from standing in the hospital, bending over the hospital bed to talk, sleeping in a tiny bed) I was unsure about my ability to enjoy myself. So I caved... I caved in a way I never thought I would...




I rented one of those horrible rascal scooters. I did it. And I loved it... I am embarrassed to admit it, but I loved it. I would have never been able to walk the park without it. And while I did not really ride the rides, I rode the scooter. Yet I was present for my kids to have a bit of fun... and they needed and deserved some fun. Watch out world... I was in the need for speed!


Craptacular #3 - Bullying Part 2

So what do I do after returning from a week of stress and worry about my mother-in-law? Basically, I jumped right back into dealing with my daughter's bullying situation. When I got back so much had happened.




You know it is not good when your friend calls you crying because she is so upset that she is the one to tell you something that happened. She and a group of parents were told some horrible things at a PTA meeting. A teacher actually talked about my daughter, while she did not use her name, she referred to her at as the girl in 2nd grade who is lying about bullying. She went on to discuss issues in a public setting things that she should not have been aware of.

This teacher is in a different grade, who is not involved in this process, openly discussed my daughter’s situation and anonymously labeling her a liar.  This showed me that someone within the group at the first meeting openly shared the nature of the issues with at least this teacher and, most disturbingly, the faculty had already reached conclusion that my daughter was dishonest. I was appalled!

Things in my life just never seem normal or uncomplicated. Now you see why I told you earlier that my friends should have hung up on me... or at least ran away screaming. Instead that brave and kind friend went to the school meeting with me. Can you say... over and above the duty?!?!




I was not surprised by what they told me during that meeting. They said that they had held an investigation and did not find anything to support my daughter’s claims aside from a few minor behavior issues. All but two of the children they interviewed had denied any wrongdoing. They said they are unable to do anything about past issues because we did not report the incidents at the time they occurred, but they are looking out for future problems. They basically called my daughter a liar... like the teacher did the night before.

After we told them we had parents and proof of both the bullying and the teacher talking at the PTA meeting, our meeting suddenly changed. Magically they began to believe that bullying might have occurred. However, they never really apologized or acknowledged what happened to my child. Basically, I did not trust them any more. How would I keep my child at a school that publicly labeled her a liar and behaved so unprofessionally?


In my head...


Did I mention that these past weeks were crap... it was crap! The bullying was bad. The stroke was bad. Seriously, I am tired of bad.

We literally bought our home to be in this amazing school district. We never imagined that we would be dealing with issues like this... especially with 7 year olds. I never imagined that the issues with the school would get so far out of hand.

I really just wanted the kids to apologize to my child, offer help to the child with severe bullying, and for them to better monitor the kids so it stopped. Instead, I felt like more and more issues and problems with the school just kept coming to light. I fell down the rabbit's hole!!!!

With only a few options available, I applied to the local magnet elementary school. I am hopeful that she will get in to that program for next year. It is done through a lottery... so keep your fingers crossed... and until then... it looks like I will be homeschooling...





"When you reach the end of your rope, tie a knot and hang on.”


Episode Reference: The Adventures of Huck Finn, Mark Twain
"Oh, what a turn you did give me!
and how glad and grateful I am it ain’t no worse;
for luck’s against us, and it never rains but it pours..."

Wednesday, January 21, 2015

Cold = Pain = Help

Episode CVII - And I’ll find strength in pain


Bwah-ha-ha...

The weather is not my friend. By all accounts it is not even that cold. I do not live up north getting bombarded with snow. I am not dealing with snow at all, other than a dusting or two. Yet, my body feels like it has been hammered with aches, ailments, and aggravation. Did I mention, my body is not my friend!


Me not liking the cold!


The constant weather fluctuations causes aches and pains, while the cold air feels like stabbing ice picks on my skin. Even my hair follicles hurt... how is that possible?

Sure I just went through a similar - holy crap, this is bad - moment less than a month ago due to the weather. So, again I am resigned to pain and more pain. It is during these times that I resort to mild swearing and fist shaking!

I feel like I just live in continual misery and never know how bad my days are going to be. My pain gauge ranges from this sucks some to shoot me now. Seriously, when it gets bad I wonder if it was worth living. Cancer treatment has caused me so many additional life changing non-curable ailments that have negatively affected my quality of life.

Everything in my daily life is now a struggle... thank you chemo... thank you surgery... thank you radiation...


Cold really is literally a pain!


So, fibromyalgia is constantly kicking my butt and the cold really hurts. It is not like cancer was not bad enough. I mean I fought hard to live and then I end up with multiple live altering illnesses. Not sure about the irony in that!

You may be wondering how in the tarnation did I get fibromyalgia from cancer treatment? Physical trauma, infections, and toxins are known to be triggers in causing peripheral neuropathy (which the oncologists will admit can happen), but treatment can cause other nervous system problems (chemo-induced fibromyalgia).

Throughout my treatment basically any weird side effect was put under the "it could happen" comment. I think they really do not know as much as they think they do and little research is going into the effects of treatments.

Imagine the nervous system works like a clock, perfectly in balance. To keep the time correct the clock has to work properly. Now imagine that the clock gets slightly off-set, it is not perfectly balanced. The time will not be wrong. It will work but not correctly. All of the toxins (as chemotherapy is a toxin) off-set my clock, so to speak.


With a messed up clock, the nervous system is sending pain signals incorrectly and often consistently. So my pain ranges from burning, to the pins and needles, to stabbing sensations, to numbness – making living sometime very challenging. I want my clock to be reset!!!!

While I am grateful to be alive, I really do wish that my quality of life was better. Since I am stuck with what I have, I am having to learn to cope. Instead of blaring curse words and screaming about the injustice of it all... I do what any normal person wanting to help alleviate nervous system pain would do... I cover myself in a heating blanket and layer myself in warm clothing. I endure... I smile... I find the positives...


Chilly Willy understands!!!


Whine. Whine. Whine. I am whining. I am complaining. I am shocked that I am still whining eight months post treatment. The blanketed statement that "you should be back to normal" comments after six months or so from doctors were definitely not true. Maybe they meant a new normal full of fibromyalgia, arthritis, and lymphedema.

Seriously, I am in awe at how little I was told before treatment and how so many women (and men) on the internet complain of similar outcomes as mine. We need to unite - post treatment people with problems - and demand research and change and options for a better quality of life... yeah... email me...

Since I am hurting and whining I took myself back to the family doctor. Not the oncologist, because they do not see a need to treat this... and why would they... they only caused it. My family doctor really is trying to help and find solutions. He even found and new medicinal option. I would hug him if it did not hurt so much!!!

I cannot take the medication the neurologist prescribed, as it makes my hormone therapy ineffective. And the oncologist is all, stop taking that and get cancer again. So, I guess I am not taking that medicine. Now my family doctor found another option, something that is not as commonly used, but has been known to help with fibromyalgia. Bonus it will not affect my hormone therapy drug, so less chance of killing me. At this point I am ready to try just about anything.... seriously... drug me...


Let's try out some Savella.


The fibromyalgia medicines I am on work on different things.

  1. The nerve cells are firing off too many signals. Making me sensitive to stimuli that are normally not painful. Basically don't touch me! The Lyrica is supposed to help by decreasing the nerve signals, so I do not register pain all of the time.
  2. The nervous system changes can cause a greater sensitive to pain. So, Savella should work on my brain, changing the neurotransmitters and hopefully reducing the level of pain. 
While I have no idea if these drugs will help... I am ready to try.




In my head...


I cannot believe how many medications I am on. I did not take this many while I was in cancer treatment. Now, I am like a walking talking pharmaceutical experiment. And a costly one at that!

While I am trying to find an answer in a bottle, I am still trying to find relief outside of a pill. I have no specific studies to show why heat feels good, but it does. It is calming. It is like my body can relax under the warmth of my heating blanket and dull my constant pain. Aaahhh! I wish I could just walk around in my heating blanket. Wrapped up in a warm blanket of relief!

I feel that I spend most of my time complaining. Was I not just complaining that I disliked the summer because it caused swelling and other issues? I kept thinking winter will be better. Ha! Now I am in winter complaining because it is causing severe pain. Obviously, I do not like either season at this point. Now I have a dilemma....

I am begging my husband to move. To move somewhere with year round mildly warm weather... that does not rain, snow, sleet, hail... that has a small self-cleaning house...

Don't burst my imaginary perfect existence... a girl has to have dreams.


“Complaining does not work as a strategy. 
We all have finite time and energy. Any time we spend whining is unlikely to help us achieve our goals. And it won't make us happier.” 
- Randy Pausch, The Last Lecture


Episode Reference: The Cave, Mumford & Sons song

(a song that meshes some of my favorite things
literature, Italy, & deep meanings
Homer's Odyssey, St Francis of Assisi, Plato's Cave)

Thursday, January 1, 2015

New Year. New Beginnings.

Episode CVI - I will begin again.


With all the craziness that surrounded the month of December, I was ready to let off some steam. I was not attempting to have a lets get all crazy, wild New Year's celebration... it was more like a relaxed, attempt a few drinks at home celebration. That and try to stay up until midnight!


Did someone say Margarita???


With the television on some standard New Year's countdown I began to drink a Margarita out of a Stewie power-tripped cup. You will bow to me! I am not sure if I should be proud or embarrassed at how my form of New Year's celebrating has changed over the years. I am officially showing my age or the fact that I am acting older than my age!!!



New Year's has changed even more recently. I am on so many medications I need to be careful when I drink. Besides the crazy hot flashes that alcohol creates... my nervous system is already a mess, adding alcohol makes it even more slow. Basically, alcohol makes me a personal form of entertainment for those around me. Ha ha!

After only one drink I looked like a full blown drunken mess... or the beginning stages of one. I was walking somewhere between tipsy and drunk. Then there was the hot flash... I was on fire! I looked like a red-faced drunk fool. However, I am not sure how this looks any different than me without alcohol.

After having to strip down to a tank top and apply a wet cool cloth to my face, I began to realize that drinking is not what it used to be. It seems that my days of alcohol, mischief, and mayhem might be limited to just mischief and mayhem. I can handle that!!!


Happy New Year!!!


I made it to midnight and so did my youngest. We celebrated and cheered and hugged! While I did not spend New Year's partying with the masses, I did spend it with the people who matter. And sometimes being at home can be the best party in the world.


... it's a brand New Year's Day


In my head...


As for my New Year's Resolutions... well, I do not make them. I could make a list of things I want to improve about myself, my life, and my future. However, I am just hoping for a better year than last year. A good, happy, healthy year. Maybe a few less doctor's appointments too!!!


“For last year's words belong to last year's language 
And next year's words await another voice.” 
- T.S. Eliot, Four Quartets


Episode Reference - New Year's Day, U2 song

Wednesday, December 31, 2014

Good-bye 2014

CV - She ran down the forest slope


Time to celebrate the end of my very long month of December Doctor Madness. It was time for my final appointment of the year!



look who's celebrating with me... 



My final appointment was also my final appointment. It was my last OT visit until I need them again. Basically, I was finished until my arm decided to flare up more than normal or in a way that I could not manage myself. Fingers crossed it won't!!!

While I do not want to need the treatment, I will miss my OT therapist like crazy. She has become such a great friend and supporter. Not only has she provided me with hour long boobie massages (or manual lymphatic massages for those technical people), she has really spent that time encouraging and pushing me onward. I really will miss our hour long visits. I miss her already!!!

While I could have continued on with my OT treatments I needed a financial break. With the new year only a day away, so was my new deductible. Very little makes me worry, but the costs of living... that scares me!!

Knowing that my prescription costs would increase soon, I attempted to get everything refilled before the end of the month. When I picked up one of my prescription... it dawned on me... I realized how much I will be hating January. I am really going to be hating January!!!


Wow! These tiny pills are expensive.


Yep, that is an actual copy of my receipt for one medicine... and only for one month. I will be spending close to $400-$500 next month for just this prescription. Of course, I also have five to six others I will be paying for as well. And as a bonus, one of my other prescription is only slightly less than this one. So, I will be spending almost $900-$1000 a month for prescriptions for the first few months of the year until my deductible or out of pocket has been met. I could really have a nicer house or even a second house with just my prescription bills each month?!?!?


drugs are expensive... even legal ones!!!


I do not think I ever realized the continued costs that are associated with the after affects of cancer. I never imagined that all of my aggressive treatment for aggressive cancer would leave me with chronic medical conditions. Cancer is destructive in so many ways, and continues to cause havoc even after treatment... for some!

Blah. Blah. Boring cancer, fibromyalgia, arthritis costs rant. Blah. Blah.




I could go on forever about costs and cancer and chronic pain and all those daily annoyances. But like anything, lingering on the negative too long is unhealthy. Acknowledging it is healthy. Lingering on it is unhealthy. So, I move on. I move on until I need to rant again... and again...and again..

Finding positives in the midst of negatives is one of my strongest assets! And something I have found very handy in life. Within the chaos of this month, I was still able to visit with my amazing family and celebrate the holiday with them.


sometimes the positives are easy to find...


Not only did we visit and climb trees. Each holiday we draw names for gift giving. I was lucky enough to get a fancy new Lymphediva's sleeve and some make up from my sister-in-law. She really spoiled me this year! Plus, it is about time I started to look alive again!!!


modeling my new sleeve...


My mom even got me some special massacre which is seriously working. I am getting longer eyelashes. I have had such great results with the Grande LashMD products. Not only have my eyelashes started to come back so have my eyebrows. I think I need to actually pluck!?!?!


it is official... some lashes have grown back!


Side note: I do not get any special free products or money from them, I do not even think the company knows I exist. However, I want to share that the product has worked for me... and I am just glad to have some eyelashes again!!

I am ending this year as busy as I started... but at least I am celebrating the new year with some hair...



a lot has changed & it has been busy 
from January to December...

In My Head...


I am so glad that this year is over!


how I felt this year!


It has been a very long year...

A year of radiation. A year of cancer hormone therapy. A year of occupational therapy. A year of new doctor specialists. A year of new diagnoses. A year of fighting to live with joy, happiness, and laughter!!!


“Tomorrow, is the first blank page of a 365 page book. Write a good one.” 
- Brad Paisley


Episode Reference: Dirty Paws, Of Monsters and Men song
- amazing video -
plus, I felt like I was that running beast all year
so long 2014
hoping next year has slightly less running