The Reluctant Red Nose

Today I headed to see my parents….my Dad has dementia and my Mother is starting to have some issues as well. We have tried to seek other care providers but my parents are stubborn and refuse to listen to reason.

Dad has been brought home by neighbors several times….found walking in the road barefoot.

Today his hallucinations were a lot and I am tired. I watched my daughter roll with the punches and we laughed together…because otherwise…you will cry. Today my Ellie was cutting cake for her grandfather…he asked her why she wasn’t cutting a piece for the other little kids (there were none). My daughter, without missing a beat….looked at her grandfather and said… “they can’t have any right now.” And he replied “oh, ok!” And that was it!

My reality is that I won’t have conversations with my Dad like I used to….I wish I would have known when that was….maybe I would have appreciated it more.

Today I told my Mom that I had had cancer and that’s why I haven’t been able to be around as much. It upset her….she wanted to make sure that I was ok…my Dad sat there listening….not absorbing any of what I said to him….and that’s ok.

I brought them a simple cd player with some Books on tape…hoping maybe that will be a good distraction.

I repeat myself

I speak at great volumes….I am literally shouting….

It is always meant with words being spun completely wrong

I am grateful for humor…laughter….helps the pain go down a bit easier.

I called my sister to vent….and cried a little…

And tomorrow…..we will pull ourselves back up…and keep going.

Last night we were headed back from DC where half of our adult children live. I was doing just fine because I will see them again in September, so I was doing fabulous….no tears were falling down this girls face…I was good!!!

Then as I lined up in my little Boarding A group….i looked outside…..and I saw the train that my son rides on everyday…and I teared up.

This past year scared me…..I was afraid I would have to say goodbye way earlier than I wanted.

Trey was born in Overland Park KS…but was raised in Kansas City…the Missouri side. When he was three I remarried and we moved to a little town…and he has always longed for the big city….

I get its charm. Whatever I want to eat….I can….

It has amazing museums and art galleries.

There are phenomenal monuments

The food is pretty darn good!

There are quirky art galleries as well….

The amazing Hope Diamond

But still….every parent hates to say goodbye and get on a plane.

If he’s sick….I am too far away. If he’s lonely….I am too far away…..if his heart is broken..::I am too far.

So even though that train makes me sad….i pray over it…I pray it keeps my boy safe on his way to and from work. I pray he meets nice people on a day he’s sad. I pray he is kindness and stands up for those who are alone.

This is what it looks like to let your children fly….and it’s not easy….

In about a month I head to clown camp….this will be my 4th year attending.

I know this year will be very emotional because many of these people have texted daily…sent me gifts to make me smile…they have totally been there for me. They have gotten unattractive pictures of radiation burns and lumpectomy scars. They have seen radiation stickers and listened to me whine…they have been my complete “applause” crowd.

Many people will say things like they hate clowns….that’s because you don’t know them. You don’t know the selfless things they do. They put themselves in silly costumes and learn how to do it all in their spare time. They spend countless hours perfecting skills just learned with one goal….to make you smile.

Clown camp is a healing place for all of us. We don’t have to explain wearing crazy socks or clothes….because all of us get feeling extra. If you want to cry for a bit we get that to. If you want to wear a clown nose all day because you need to know if it fits you…we can get behind that. It feeds our creative clown side….we learn from each other. We show our scars to one another. We love each other.

It is a week of fun….laughter….unbelievable hard work. It is exhausting, it is healing….it will push you further then you ever felt you wanted to go. It is magical….

You leave your shyness at the door….because eventually it will stay there anyway because clown camp doesn’t judge….it encourages….

Well, unless Hoot is your teacher….then he will push you further than you ever thought you could go. You will cry…but in the end….you will be so proud of who you are.

My clown friends are my family. They sent encouragement, flowers, countless gifts…and daily texts….they encouraged me not to give up….they were my cheerleaders….

Clown camp can’t come soon enough….but at the same time, I don’t want it to come yet….because this year it will be harder to say goodbye than ever before.

I will never ever forget…..all my clown friends did for me…..they are the best humans I know!!!!

I think that is a title I used to want to give myself…and probably still would want to. I know all the right things to say…and how I should feel…and let me tell you, I have no intention of saying any of those things.

This blog was meant to be real…(somewhat) and that means somedays just being very real and vulnerable.

When I found out I had cancer I was only partially surprised….with two of my sisters having it I knew my time was soon but honestly I felt I had about seven more years before I would need to worry about it.

When I found out my diagnosis I tried very hard to remain calm and courageous….but I was terrified. I had a surgeon who was confusing even though talented….but did not prepare us for the road ahead. In order to not scare me he downplayed everything….which made me feel like it was no big deal from the beginning….but it was….it was way more than he prepared me for. I sat with his nurse for awhile because I was so confused on my diagnosis ….I felt like a fraud from the beginning….until his nurse said “Jamie, you have cancer, it is not invasive but if we don’t take care of it right away it will be. “ I just felt that from the beginning it was downplayed and I just wanted to know where I stood.

My Radiation oncologist told me my cancer was at a 98 percent will not return rate! She told me I could do this! She hugged me when I was done! She told me to take Benadryl for the itching and to slather on the hydrocortisone. She made me fight hard and get through it.

My hormone therapy oncologist is much like my surgeon….(he is not my favorite) he likes to downplay ….everything….so this is why my brain does what my brain does….

I’m just not sure who I am supposed to believe….i agree we should not panic….but is there a place in the in between where we can say…this is hard and I am proud of you for doing it! Go you! Is that out of the mix? I’m not saying I need them to say it everyday or every visit….but just once….just once can we agree that no matter the stage of cancer….it just sucks?

Looking back….I feel that it is my nature to downplay things…not allow myself to enjoy what I have overcome or feel a sense of accomplishment.

I recently got a tattoo symbolizing the old me and the beauty of the new me…and the beauty of strength with overcoming something so very difficult.

I like to say things like well….I didn’t have chemo so it’s not as big of a deal….I didn’t have a double mastectomy so somehow it does not count?

It’s like the same thing I did when my first husband died…

Since we were separated I guess people thought it wouldn’t hurt as much? Like raising my son by myself wouldn’t be as hard since we were separated?

I realized….that is just what I do. I listen to people who don’t know me or care about me and act like that’s just the general consensus.

Having a lumpectomy was not an easy road….dealing with vertigo during radiation was not fun. Having severe burn during radiation was freakin hard….being tired from all of it was a lot. Knowing that life still required me to keep going and moving and not rest properly (not well done) then dealing with lymphedema (still doing that) and then having to get used to the drug tamoxifen all while running a business and raising a kid…and having a husband and navigating life. I actually played keyboard at my church while dealing with vertigo…..seriously.

Those are hard things….and they should be celebrated….

Turning 50….kicking cancers ass….these are things that as my pink sisters would say….make me a badass…..which I whisper to myself a lot lately. Having my other friends rooting for me…but somehow those that know what it’s like to hear e the cancer diagnosis makes me perhaps believe it….like…if they said it…it must be true!

Cancer sucks….we all agree with this….different levels don’t require bigger medals…..

And it’s ok to just not be ok.

There is no competition for cancer….we all just want to win.

I will start trying to give myself some credit instead of constant self doubt

When I started radiation…..I promised myself I would celebrate the end with a tattoo. For many weeks and several months I tried to come up with a saying….

Many people write…Brave….or fearless….strong….fighter….I am none of those things.

I fight quietly….I get through it…I get up…and keep getting up….

I cry to myself….I cry to my friends….I cry to the nurses….

Today, I said goodbye to my huge scar across my breast and the small one above it where they took 5 lymph nodes. I said goodbye to vertigo and 20 rounds of radiation. I can’t say goodbye to lymphedema yet or tamoxifen but I can say I know how to deal with it better now.

I said goodbye to the woman I once was..the one who could hike and row and never thought anything of it. I said goodbye to the woman who did activities she didn’t really understand were precious..::

Today I marked….that I’m here. I can see my kids…my husband….my friends my family….

I can still clown …I can still go on trips…I can still enjoy this beautiful life.

Sunsets now are prettier. Rivers sound better and hugs feel safer.

I am not the same…my body doesn’t look the same….

I am not sure if it will come back….I personally believe it will do all it can to come back….but I am not easily overtaken….

There are no guarantees in life….

Enjoy your life….and relish in the fact….that you are still here.

Today as I was working on things from the couch….feeling sorry for myself really…and sick of feeling achy I started taking a look back at clowning.

I started clowning 18 years ago….with a newborn and three kids I had to take time off but I did it when I could. I was able to make a lot of new friends….

I even was able to be nominated as the 20 who Count in our little neck of the woods.

I have clowned for school carnivals, events, fund raisers, VBS, nursing homes….you name it….

I have taught many classes on clowning and even conducted our own graduations.

I am just not ready to be done…..

I think that’s why I’m frustrated….my body simply will not do what I need it to do…and I don’t know how to navigate it. I don’t know what it looks like…I don’t know how to make it happen. I don’t know how to ask for help or of no need help…I don’t know when I should push myself or if I should stop and rethink it….

I just honestly was not prepared and right now I feel that I am kind of in a free fall. I am unable to figure out the correct path for me to go….

It is causing great angst….

One way or the other I will figure it out. It doesn’t have to be today that I figure it out….I will just have to rethink how things are done and kept on moving.

My fight is different than most….as I walked down by the chemo room and turned right to go to Therapy….I realized….just because that wasn’t my fight doesn’t mean my fight isn’t hard…it just means it is different….

None of it is easy….fight on!

Today I feel like that person everyone avoids. The one who can’t say anything nice about anything. You can say the sun is so beautiful today and they would spout off how hot it is.

I woke up and took a shower and felt fine….drank my awesome coffee..then right when I was getting finished making my bed the worst achy and painful feeling came over my entire body. It literally feels like my insides are aching. I actually feel like a ran a 5K for the very first time in my life.

My OT worked on me for awhile told me my back and my hips and my spine were causing the disruption in my lymphatic system…and let me tell you my arm is feeling it.

I decided to listen to the ladies who also take this medicine and push through and then rest….I’ve been working on homemade bread today, made a chicken soup for the crockpot…and cleaned bathrooms. I then have decided to take a break by working on a transcript for end of year for my daughter that we homeschool and get all of that finished up so that in September we are ready to start her Junior year.

Setbacks are bound to come and I do know that….but I was feeling pretty good and hopeful that this medicine I have to be on for five years that we would get along….but now….I just do not know.

I feel bad for those who have had to listen to me whine today….

I know I put out to many negative statements into the world today….

I want to go make people smile and laugh….I do not want people to see me coming and run away because they are afraid of the complaining that will come from me….

And I think that’s why she’s my favorite character to do. I want to do all these things….I hate cancer so much…I am grateful that I no longer have cancer but all the treatments to keep it from coming back or that occurred during the course of treatment are making things hard.

I am trying to find things to focus on….

I will try to quit complaining….I need to find an outlet to yell into….

Today didn’t go my way….we will try again tomorrow!

Today was cool and rainy perfection. My body appreciated the cooler weather. My daughter and I did a pickup order at Target…and because I am scatterbrained, realized all the things we forgot to add to the order, so we had to go inside. We did pretty good and stuck to our list.

I had to pick up my “cancer never coming back medicine” which my insurance now pays completely for….I guess it’s cheaper than cancer coming back. Once again I was grateful to a pharmacist who caught the fact that I was going to be charged and should not be. Grateful that he was vigilant and made sure it was the same manufacturer so that I don’t have any more side effects…. I am grateful to those who look out for me.

My daughter and I got some t shirts and mascara kind of day with a side of cold brew coffee…..pick up at the library and some fresh flowers and we were ready for home to get lots of things complete.

I realize that there is nothing extraordinary about this day….but I choose to write down the things I’m thankful for: 1. Rain and cooler weather 2. Cozy sweatshirts 3. Hot green matcha 4. New mascara 5. Dolly Parton t shirt 6. Our store is busy 7. My crazy dogs. 8. Vigilant pharmacist 9. New phones with awesome cameras 10. Birds visiting my bird houses 11. Peanut butter and jelly 12. Strawberry flower vases

13. New candles 14. Making soap 15. Edible flower petals for bread

I turned off tik tok….I turned off the News….

Life is not guaranteed….go pick some flowers….and put them in a strawberry vase….I promise you will feel better!!!!

Yesterday was my first day back to the surgeon three months post op. He was pleased with my healing. I don’t have to have another mammogram until February because he doesn’t want a false positive and then I will see him on the following day.

I then headed to my eye doctor….my eyes have gotten worse so now I will have a fabulous new pair of bifocals 🥴

Today I went to my OT and my arm is not worse….but lymphedema hates summer and I completely agree. She told me to remain vigilant and that the sleeve must stay on. My arm aches most days right now and when I’ve overdone it in the heat it actually hurts…..

These things overwhelm me most days. I am not going to sit here and tell you what a warrior I am…because that would be a lie. I whine and I cry…then I put my big girl panties on…but usually not with the best spirit.

As I listened to my doctors and all the people that have had to help me get better….I was nothing but grateful.

You know when you travel somewhere far away….then you finally get to that destination and you run down to the ocean and you keep running until you are in the water….and that whole stupid trip was all the sudden worth it? The kid who kicked your seat…the rude flight attendant…the airline that lost your luggage? All worth it…that beautiful Cozumel water…worth it.

Cancer is like that…..it makes life sweeter….irritations not important. Stupid people don’t take priority. Fights and grudges not important….stuff….not important.

Cancer…..I will never stop fighting and hating you…but I refuse to let you win. Setbacks will come….this stupid sleeve will leave my arm someday. I won’t always have to be on Tamoxifen… you won’t always get the last word…that belongs to me.

Tonight I looked into my teenagers bedroom and she had her light on and was reading before bed…and I took a picture in my mind…saved it to a memory. Her wet, curly perfect hair with her glasses and sweet smile…her sweet disposition…and I just want her to stay there forever…safe…unspoiled….hasn’t learned the harsh realities of life….

Today, I was really missing my son….in a few weeks I will be able to hug him…there was once a day…he would run to my bed and shout Mommy and jump into bed. Now he towers over me…but he will always be my precious son…who taught me what true sacrifice really is.

The heat today is putting me on the struggle bus…I have struggled all day. Horrible headache and no dinner….the thought of food…gross. It could be my medicine….but I just felt all together crummy all day.

I look around at my house and my store and all the things that need to be done and I am overwhelmed. I wish I had my energy back to do them….

Routine seems to be lost as soon as we get a rhythm. I feel as soon as I finally get things really moving there is a huge interruption of life and I’m behind again. I remember when I at least made progress…now I feel my life is a giant game of Wac A mole.

Today….I wish I could tell you I was all about being strong and brave….but this chick is tired…

I want to get back into shape….I want to be fit again…but there is this part of me that just doesn’t want to get up again….

Tonight my husband could see the struggle is real…he told me not to give in….sms I held back tears….

Because that’s what I really want to do…..

My Dad is failing…..my kids are all growing up….a hobby that gives me joy I can’t do right now…and the only thing I do anymore is go to the doctor….

Case in point tomorrow I have three appointments!!!

I walk around with pill boxes and take vitamins to ride out the affects of the very medicine that will give me life. Then, in all the whining….in all of the self pity….poor me…..

Perspective…..I have lovely children, a growing business, a lovely husband…a house I adore…a camper, a car I love to drive, a community of crazy clowns I adore…friends. I am one of the lucky ones….today I am cranky and tired….but I am so lucky!