After all this time…

You would think that after all I have been through with diagnosis, cancer treatments and surgery I would not be at a loss of words when someone tells me about a cancer.

Well, I still have no words. What do you tell someone who’s aunt just finished her fight with breast cancer and was doing so well only to find out now she has a completely different cancer in her lungs.

You don’t.

You sit there dumbfounded and selfishly thankful that it hasn’t happened to you yet. You spit out words of how they have really made great strides with immunotherapy for lung cancer and not to give up hope. That she fought before she can fight again. Words I say knowing that I would probably not fight the next time.  Words that really bring no comfort to anyone. Words that make me feel like I am making it worse.

I just stopped talking. It is safer that way. I know this from my own experiences of people trying to comfort me with their words. I stop and hug. I cry with her. That has to be better than the words, it has to because that is all I truly can give.

After all this time..

I participated in a fundraiser event today for a woman hit by cancer. Her friend wanted to help with some of the out-of-pocket expenses. I was honored to be asked to come instruct a few songs. It has been soooo long. I am rusty. I practiced and practiced and practiced.

I should have practiced better words to share with her. Better words of encouragement. A better game face of how lucky I was in all of my treatments. How lucky I am to be on this end of it.

 

After all this time I still have so much to learn.

 

 

 

 

 

 

 

Last night I slept without a bra on….

I know this may not seem like much to you. In fact I would venture to guess the majority of people sleep without bras on. I used to be one of those people.

When I had the double mastectomy with reconstruction I came home from the hospital wearing a velcro wrap. It was tight and uncomfortable. It was necessary to wear to keep the swelling down and to make sure my new foobs stayed in place and would look symmetrical. Eventually I was allowed to exchange the wrap for a sports bra. I had to wear the sports bra all the time, including at night.

As time went on and the expanders were filled to the capacity I wanted, I was able to wear my ‘pretty bras’ again during the day. At night the expanders were so uncomfortable and unmovable that I would wear the sports bra or the surgery bra to bed to be a buffer. Laying on my side was tricky and the support of a bra helped.

Because of chemotherapy the exchange surgery had to be postponed for months. MONTHS! I had to wear the hard and awkward expanders for ten months. That meant continuing to sleep in a bra or some sort of supportive garment.

Last night I felt confident enough to sleep without a bra on. I slept on my side, on my back and on the other side. It felt wonderful and honestly I almost felt normal. NORMAL!?!?!?!?! Is that such a thing? I can’t even recall feeling normal, except for those rare occasional moments that last for just a minute or two.

I have a followup appointment this coming week with the plastic surgeon. I think everything looks great, as great as it is can get considering. I am looking forward to her telling me that. And that I will be able to jog again. And that I can wear my pretty bras that I just bought from an online company that specializes in bras for mastectomy and reconstruction patients. They are expensive but very pretty. I want to be as normal as possible, I think the new bras will help. So will the jogging. So will the ‘all is clear and good’ from the doctor.

No bra at night, pretty bras during the day. Who knows, next I might wear jeans again.

 

I woke up hungry…..

I have been so hungry lately! I have been feeding all my cravings. Tacos, fried chicken, bread, bread with butter, bacon, Chinese food and chocolate cake. I usually don’t give in so easily to my cravings. I have learned to combat most of them, or at the very least learned how to portion control them (except for tacos, you can’t control tacos). Lately I just can’t seem to get enough food.

Yesterday I made breakfast. YES I MADE BREAKFAST!! I made sausage patties with two over easy eggs, sautéed salad with sesame seeds and fresh strawberries. I know, so much food. Yes, I did sample the sausage as I was cooking it, you have to taste test you know. We didn’t eat breakfast until nearly 11 AM. Hubby slept late and I am very slow to getting around at the moment. Later that day we stopped for takeout from a yummy fried chicken place called Ezell’s Chicken. I ordered the 2 piece combo. That includes 2 pieces of chicken, a roll, two sides, I had potato salad and mac and cheese. I also ordered a side of onion rings. I ate it ALL! This took place about 3:30 in the afternoon. We called it linner since it was well after lunch time and way before dinner. At about 5:30 pm I had a large slice of chocolate cake and called it a day.

So tell me, why would I wake up at 2Am starving!!! Seriously my stomach was growling so loud it woke me up. I got up and drank a glass of water and reminded my belly of all the food I ate and there is no way it was true hunger pangs. It couldn’t be.

Today I have decided I really need to get back on the food track. Since I am not able to exercise for at least another week I should make sure I am at the very least eating right. This morning I started with my protein shake. It is full of good for me things. It is a great way to start my day on the right foot. Let’s see how long it will be before I am on my left foot. The struggle is real people.

In other snippet news:

I put out my very first newsletter from my website http://www.Cancercize.com I have determined that I need to hire an IT person or someone who knows what the hell they are doing. I couldn’t rotate any of my pictures, I couldn’t change the font size, I couldn’t figure out any of the edit helps. I know if you follow my blog you have already figured out that I have no idea how to manipulate any of this technology. Big sigh.

I put out a plea on my YouTube site for suggestions of what to do with my hair. It is in that awkward stage of I have no idea what to do with it. Chemo hair is dumb.

Turned in my voters ballot and feel that I should no longer be bombarded by social media on who to vote for. If only that were a thing. I voted so no more advertisements and ‘friends’ plugging their agenda/candidate.

Went for a short fall leaf drive. Hubby drove, I enjoyed being out and about and all the beautiful colors.

I am scheduled to see the plastic surgeon tomorrow. I am concerned that my left drain may  still be pulling too much fluid and she won’t remove it. I cannot, I repeat CANNOT stay wrapped up like this anymore. I am restricted in movement. I itch like crazy I want to breathe easy.

I am restless at night tossing and turning like crazy. I am not allowed to sleep on my side so it is just my head swiveling from right to left frantically. Tossing and turning like this has gotten my girdle in a wad. Not my panties just my girdle. It has also given me horrible neck pain. My neck and shoulders need a professional massage. If I get my drains removed I can shower and clean up enough to go find someone to do that for me. So much pending on getting the drains out.

 

P.S. I still want more tacos.

 

 

 

Confessions of an out of shape fitness instructor.

 

I have a belly. I have a big belly. I have large and in charge thighs too.Even when I was down to 128 pounds I still had thighs. The thighs rule my closet. The thighs determine what pants/skirt/dress I can wear. The belly determines what shirt/pants I wear.

Funny thing is I am a licensed fitness instructor. Does this mean I am fit? NO. Should it? Probably. Does this mean I have figured out how to eat right? NO. Does it mean I have the tools and knowledge to eat correctly? YES. Do the thighs and belly stop me from moving forward? NO. Does that mean when I get on the scale I don’t cry when I see the number? NO. Does it mean that I know better than to get on the scale? YES.

Tonight I did my Cancercize with Renee B video and wore a crop top. A CROP TOP!! What the hell am I thinking? My belly kept popping out all over the place. I referred to it as my Big Bertha Belly.

Truth is my belly was starting to conform, behave actually. All because I was watching what I eat. What?!?! a fitness instructor admitting that eating right works better and faster than exercise. Sigh, yes it is true BUT you have to keep moving so your body keeps up with the weight loss and you don’t look like a baggy sack of stretchy skin. Besides, working out and moving helps your energy levels and mental stability. Food can’t always do that for you. Bleh it is all about balance. But I digress, we are talking about the belly and thighs….

I often wonder if I am actually doing more harm than good when I do these online workouts with my body shape. My energy levels and strength are lower than I am willing to admit. It is harder to workout and my ten minute Cancercize videos are all I get in on most days. Do I have the right to call myself a fitness instructor with how I look today?

I do you know. I studied and passed the national exams. I went to the training classes and put my time in. I AM a fitness instructor. I AM not perfect. I AM not in the best of shape. I AM trying. I AM a work in progress. I AM what most people are. I do have the right to teach classes and be online and have a Work it Out fitness group. I am real. I am honest. I have bulges. I have low energy. I struggle with a hard workout. I modify all the time. I have food struggles and issues. I have thighs.

Anyway here are some old pictures of me. Hope my friends don’t mind that I shared these. But you can see my thighs and belly in all of them.

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Joy is not circumstantial…

About a month ago the Reddaway truck driver that used to have our route was covering for the new driver. He knew that I had been fighting cancer but hasn’t seen me since the surgery and public announcement. He simply said  ‘your smile is still here’ All I could think was ‘of course, joy is not circumstantial’

There is a difference between joy and happy. Happy is a temporary emotion generally driven by our circumstances and current surroundings. Joy, joy on the other hand is deeper than that. It is sincere, planted deep within and doesn’t fade. Joy is not about our circumstances it is about our choice to find and keep it, to nurture it, to not allow it to starve and disappear.

There are many things that make me happy that also feed my joy.

Working out with heavier weights. Having my cousin Craig do the dishes better than anyone, ever. Picking cherries with the littles. Texting friends first thing in the morning to start the day off right. Mysterious reprieve from the night sweats. Half a pound less on the scale. Hair growing back even if it is all gray. Hugs. Going all week without a head covering. Planning for the future. Hitting my Fitbit goals. Creating new memories. Easily forgetting the drama and stress at work. Discovering my own inner strength. My own inner love. My own inner peace. My own inner drive.

I know those are all circumstantial. Yet they are making a lasting deep impression and adding to my joy. I have always been a firm believer that love is a decision. I have argued this point often. Feelings fade. Decisions should last. I honestly believe that joy is also a decision. You make the choice to be joyful. You can’t hope that others make you happy. They won’t. Maybe for a short time but people never stay the same and can never be the source of joy or love.

I am preparing for more surgery soon. I am preparing to see Paula from @neveradullbling. I am preparing to pursue my joy. I am preparing to grow as a human with a bigger heart, more compassion, overflowing joy and kindness. It is work but it is worthy work.

What will you do to fill/fuel your joy? Run? Write?Volunteer? Give? Share?

Have a joyful day my friends. ❤

Today is better….

I was so discouraged the other day. The day I wrote about ‘I can’t’

It was the first time that I really thought I can’t since that fateful call on Nov. 3rd.

My poor husband. I came home on Wednesday and he made the mistake of asking if I was okay. Okay!?!? NO! No I am not okay as I lay crying in a lump on the bed. What was your first clue? I was so tired. I just kept telling him I can’t do this. I can’t do this.

He picked me up and said yes you can you are just tired. He then told me that he will feed me Taco Bell and then I should go to bed. I think it helped. I know the Taco Bell did.

They told me that the last round of chemotherapy will hit me the hardest. Knowing it and living it are two different things. No matter how much I braced myself for it I was not mentally prepared. The fatigue was harder, the dry fingertips are unmanageable , the flat taste in my mouth and dried tongue are worse. Then to top it off my asthma started kicking my ass, er lung I should say. So not sleeping from night sweats, chemically induced fatigue and a cramping right lung truly left me discouraged. It left me at I can’t.

Today, today is so much better. Now my mind is wandering and wondering.

Thinking of things like the following:

Are chemically induced hot flashes worse than when it happens naturally? My vote is yes.

The hair on my head that is growing back is like a brillo pad. It is coarse, gray and sticks out in all directions. Soon it will poke straight through my hats and wigs. When I showered the other day I used conditioner on it hoping it will soften. I think it is a logical conclusion. It didn’t.

Vanilla seems to be the saving grace for my coffee with the tongue/taste bud issues. Is it wrong that I am drinking extra cups of my froo froo sweet vanilla coffee because it actually tastes good? Probably, but right now I am still too tired to worry about calories and dehydration. I will just drink more water inbetween cups, yeah that is totally logical.

Why isn’t being naked at work and in public acceptable? The moment I put clothes on I start sweating. Granted I don’t think people would appreciate all of ‘this’ (pointing to my body) naked.

Do all the hot flashes and night sweats smell, or is it just in my head? I have started spraying my clothes down with my signature scent just in case. It worked for the French.

I am ready for life after chemotherapy. I am searching for my new ‘normal’ I will find it. One cup of coffee and douse of perfume at a time.

 

 

 

 

 

A little personal…

As I am navigating this new journey that life has handed me, I realize how much uncharted waters there really are.

Changes in my body by surgery. Changes in my diet, exercise, daily living. Learning that not all change is good. Accepting that all change can be turned into good if I focus it. All the mental challenges of the diagnosis itself. Reminding myself that I have revenge goals that I damn well want to meet next year.

I tested a wog yesterday when I took out the trash. It was from the garbage can to the front door but I feel like I can do it. I tested lifting heavier weights in a private workout and feel like I can do it. I tested a new sleep combination/blanket and feel like maybe I can do it. Started taking my hair, skin and nails vitamins yesterday and feel confident I will have hair again. It is all these little things that are making me stronger. That I am choosing to make me stronger.

There are things I didn’t think about having to navigate through. Like yesterday. A new challenge confronted itself.

I was at a friends thirty-two hot to handle birthday party at a local Irish Pub. Excused myself to use the restroom. No big deal. I get to the public restroom and put down the thin potty seat protector (I used to never use these things but germs  concern me because of the chemo) I sit down on the toilet and do my business. Not really thinking it through. I was having a hot flash. When you have a ‘flash’ your whole body becomes a sweat pool. THE WHOLE BODY including the backs of your thighs! The part sitting on a thin piece of paper that is now officially stuck to you. Not all the paper, bits and pieces of the paper. So you catch yourself peeling chunks of ‘protective’ paper off your flesh and trying to get it all in the toilet without making another kind of mess.  Oh there are other messes. Trust me.

 

I found this today in FB I think this should be a law. 13260170_1173613056005518_4980833294891281579_n

And now I must go. The laptop is making me have a hot flash as I type! At least you now know what to expect if you are starting menopause and have to use a public restroom. The germs are probably less annoying than the paper sheet stuck to your thighs.

Living paycheck to paycheck….

Many years ago, when I was much younger, freshly married and a new mom we truly were living paycheck to paycheck. It was frustrating, exhausting, and worrisome at times. How were we going to make it?  There are bills to pay and needs to be met with a new young mouth to feed. Somehow we always found a way to make it to payday.

Life has a funny way of repeating itself. The circumstances are different yet the reasons are just as noble.

I catch myself watching my bank balance. My husband makes a decent living so he pays the majority of the bills. I am in charge of groceries, the phone bill and paying for my fitness lic. and continuing education expenses and miscellaneous things.This usually leaves me with a cushion in my bank account before each payday. Until recent events.

The cancer diagnosis was  a life changer for sure. A very expensive life changer. Bills coming from everywhere, even with insurance our out of pocket expenses ate up all our cushion. Now we have met all the out-of-pocket for now and there are no extra charges, just co-pays. Yet, I catch myself still living paycheck to paycheck.

This is why, I have started living. I no longer put off the things that I didn’t do because I couldn’t afford them. I just do it. I have loved ones that I want to send something to, so I do. I have pictures that I had developed from an October Zumba fundraiser that I have not framed. Not anymore. I want them framed and put up to enjoy. I want to send flowers to a friend, an extra card in the mail to a loved one, donate to a charity I believe in, try growing an herb garden, go out and laugh with friends. Get it?

Life is too short to wait and do the things someday. If you are not living now, then when? Enjoy what you have. Enjoy it now. Enjoy the things that make you happy. Give until you can’t give anymore. Give of yourself, give joy, give time, give money, give devotion, give peace, give encouragement. Just give and you will see that you are really living, paycheck to paycheck. Surprisingly though your life will feel fuller and richer than ever before.

Today is my last round of chemotherapy. Soon I will be living even more. Stay tuned.

 

 

Ha! My mind is moving everywhere!

Have you ever looked in the toilet when done and say: ‘that’s the perfect poop!?’ I have thanks to a Facebook story of the shapes of poop and what they mean.

Life is not about your waistline, yet you need to take care of yours so you can enjoy life. That’s a catch 22.

Is there really life after menopause? The sporadic, sweaty nights make it hard for me to believe in that fairy tail.

Actually no, I can’t just take a nap and feel better. Chemotherapy doesn’t work like that. I get really tired of explaining this. Yes, I look tired because I AM tired. It is from the chemo not the lack of naps. Possibly from the hot flashes in the middle of the night, but not because I need a nap.

Why can’t I get enough to eat? I am trying very hard to not PUT on weight. I am not able to lose any right now, but I don’t want to gain any either. This is hard when I am hungry all the time and ALL the food looks good. Even the semi-green potato salad at work in the vending machine. Yes I ate it. So far so good.

When I am tired I pretty much throw out the whole ‘no sugar, no alcohol, no non organic’ eating plan. Yes I see the reoccurring theme and irony.

Tomorrow is my birthday. Cinco de Mayo or as I like to refer to it: Cinco de Reneeo. I am expecting two wigs, a fun blue one and a fun dark one along with a skin/case for my computer. Last year I ordered the Star Wars movies. I like ordering things that end up showing up on my birthday. It makes me feel special.

This is my final random thought. Life really is short. It is easier to love. I choose to laugh. I choose to publicly document my random thoughts.

 

I have always worn many hats…..

Well not real hats, but proverbial hats for sure. You know the story as a mom you wear many hats: nurse, caregiver, chef, maid, teacher, etc. I think it is easier to wear and juggle all those hats than what I do now.

Yesterday as I was getting ready for work I tried on all the hats, hair pieces, scarves and whatnots shown on the bench above. Yes this really is my bench by the front door. Yes it is where I keep my head coverings.

I tried on every last one yesterday and none of them looked or felt right. Not one! Several of the knit hats and the two Beaubeau scarves are on loan from my friend who went through cancer a few years ago. They are actually very comfortable and usually my go to head piece. None of them felt right yesterday. So I went online to order some different colors and styles for me. Oh my goodness they are so expensive! It kind of caught me off guard. I also went on line to find a lymphedema sleeve (I am also borrowing one of hers right now too) and that really rocked my boat on pricing!

I have a beautiful friend who wants to cut off all her lovely long hair and give it to me to make a wig. I went online to find a wig maker. Found one in Oregon. It takes her 200 hours to make a wig from real hair. You have to have 8 ounces of hair and if it is all donated the wig making process cost $1200-$2200, it cost more if you don’t have enough in donation and they have to add some from another source to make a full wig.

The wig my aunt gave me is good. The color is very near to my ‘real’ hair color but the bangs are not right and it doesn’t lay right around my face. She asked me to not cut it but I could get it thinned out or styled. I tried to curl the bangs so I could wear it and singed the hair. So I emailed a local wig place to see if they will help me fix it so I can wear it.

My friend asked me the other day ‘why don’t you just own it’ meaning my bald head. She has beautiful hair and is young and bold. I simply said I am not there yet. I may never be there. I leave it bald at home. After all Keith is the one who shaves it for me. So no worries about his reaction. I just don’t know if I am strong enough to face the world with a naked head.

I have learned that dangle earrings and baseball caps look odd together. That a knit hat is awfully warm on a 78 degree day. That some of my hair on my head is still growing so it itches like mad and the Beaubeau scarves get crooked easily if you scratch under them.

Needless to say this threw me into a depression yesterday that made my whole day a struggle. It took everything I had to not cry. It took all day to get out of the ‘feeling sorry for myself’ mode. I don’t think I was mentally prepared for this. The cost of ‘cancer accessories ‘ that are actually needs. The fact that I actually cared so much.

I will get through this. I will.

At least my boobs look good.