The Reluctant Red Nose

We are back from a four day camping trip….it was hot but beautiful

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We were grateful for air at night….grateful for water hookups and grateful for electricity. We had absolutely no WiFi and it was good and bad….

Good because we could talk and relax…play games. And because we use our phones for reading and news and google and maps and all sorts of things…but it was nice to be able to unplug.

My lymphedema acted up due to the heat but not too bad…

Today I do not feel well. The medicine is working on my hormones so my cycle is cycling with a new vengeance I haven’t experienced since the age of 12. I slept for two hours today…and I needed it.

As I write this my living room and garage are littered with camping gear. We are trying to downsize our camping gear but so far we have only managed to make our house and our camper a disaster!

My father is having issues again…was found wandering the streets again this morning….

At church I started crying….thinking about how he was once again alone…grateful no one hit him…

I do not want to live in a world where he is no longer here….but I also don’t want him sad and confused and wish I could make him better….

This year has been unbelievably hard….and it seems to be the same for everyone I meet.

So for today….I am grateful for friends and lovely meals together. I am grateful for air conditioning. I am grateful for my children being safe…and I am grateful for my Dad…still with us.

I am hopeful tomorrow is a better day.

Today is the day….after joining a group of pink sisters taking tamoxifen I’ve decided to take it before bed. It seems that they do better with that so I will listen to those who have gone before me.

I know some of you ask how I’m doing….I don’t know…this has been such a crap year for so many people. I feel so many of us are hurting, so I feel the only fair place to talk about it is on here only because I feel that if you want to read it you can….if you are over it I get it.

Tomorrow I return to my OT for a lymphatic massage. Also, she does not want me out in the sun and getting super hot and sweaty. I have no idea how that task can be accomplished. I am not about to sit in the house and watch the world go by….

My daughter swims and I am going to be out. I will wear my hat and sunscreen and drink lots of water but I refuse to quit living.

Next week we go camping and again, I will use common sense but I am not about to hibernate.

Saturday was a hit….we had a huge community event for our store and we had a fabulous turnout.

The mayor gave a proclamation….

I was reminded by loving friends to stay out of the sun and keep drinking water….I admit….I am horrible at this….but I keep trying….

It is a life adjustment and I am failing to adjust properly…

I had to contact our children’s pastor to let him know I cannot clown at our carnival VBS because of lymphedema and the constant motion and how I overheat….I was mad…I hate cancer so much….I miss this funny character….

I had to buy compression socks for flying next month. I have about two, possibly three flights left this year and I had no idea how tamoxifen and lymphedema are affected.

Like most people I thought that once radiation was over we were good….but now my body still has to fight….

I am grateful that we have life saving medication and things that save our lives….I had no idea how hard that would be.

I will keep fighting….I will keep trying….and I will keep adjusting!!!

Let’s go!!!!

Today….felt good….and it’s been awhile.

There are battles and drama and trouble and fear and angst that all of us are going through. I think right now some of us feel that we will break.

Everywhere I turn someone is suffering. I have finally figured out that I am the person that absolutely “feels” all of that and it makes it hard for me sometimes. I don’t know where to put the sadness…

Today, I felt like finally…we were making progress. My OT informed me I can finally be free from the compression glove and while that may seem like the absolute smallest thing in the world…I was elated. I almost threw the glove in the air. The swelling in my arm has finally started to go down…not enough for the sleeve but definitely enough for the glove. She then went over how I am not supposed to get out and be outside when it is super hot. I must be hydrated and not get over heated. she was not happy that we have been taking long walks in the heat. She told me recovery from radiation takes about a year for your body to heal….and that would normally make me cry…but being able to get rid of that glove was golden.

My husband reaches over to hold my hand….and I have this glove….it points to everyone that there is a problem. That I am broken…

I get it dirty because I forget and start watering flowers, baking bread… cleaning the house….and I forget…🤦🏼‍♀️

Today, I felt like finally I got a point and cancer did not win today.

I know many are in the trenches right now…and I know you feel you are going under….keep holding on….the win will come. It may be little but it will come….

My Ellie is 17…..we had a lot going on this year….and it was a fight I did not feel like having….driving….I couldn’t wait…but Ellie wasn’t so sure.

She now has her drivers license but we are still practicing because she doesn’t feel quite confident yet….in two weeks she will be on her own as we have been driving every single day.

When my son was this age….I was a little nervous….a little sad…but it was freeing up so much time and I still had a little kid to take care of. Now, I am at the last one.

I won’t hear about lessons after they are done…how practices went…how classes went…soon there will only be grunting.

My car will be clean again and no longer have bags and water bottles from various activities.

I will once again be waiting in fear counting down the minutes until she is home…frantic again.

Growing kids is hard….you need to give them wings to fly….but it is so hard to push them from the nest.

This is the first step to her independence….and it is nail biting….

I still look at her like this….

Or even this….

When she was my little buddy….

I know that the last one hurts more than the others….just shows you how fast life moves…and how fragile it all is…

I am blessed and thankful….😘😘♥️♥️♥️♥️

Here we go….headed into her junior year…and I am well aware of the lightening speed in which it will go!!!

Horrible title I know….but right now it is how I feel…..ridiculously over dramatic.

Today I got a much needed massage. I always do deep tissue massage but since I now am the proud owner of lymphedema, my OT wants me to get a massage but basically wants my massage therapist to leave the left side alone. My left arm has been mad at me all week….I have been using it too much. I need to go slower but I haven’t. I feel I’m finally getting a little bit of myself back and recovering maybe from radiation.

After my lovely massage I went and got out 750 more invitations to an event our store is having….took me four hours. Then, I went to some businesses and gave them some flyers. Went home and made dinner and cleaned etc…passed out on the couch for maybe 20 minutes until the Louie barked at someone who dared to walk on the road in front of our house.

I’m exhausted in mind, body and soul. I know many of you feel the same. I feel this deep gloom…but at the same time a sense of calm? I cannot explain.

Cancer, my parents failing health, economy is stupidly right now, owning a business, new roof, kids and all that comes with that….and it has me wanting to get in a cool van and travel the country either my coffee mug and some EO…completely unrealistic….but it’s a nice dream.

My Dad is failing….and I live in denial. Last night I cried and cried because the reality of what is finally dawned on me…my time with him is coming to a close….and I am especially angry, because I haven’t heard him say my name in such a long time.

My dad….he fixed all the bad things….he really did. Leaky faucet…hole in the wall, broken heart, car broke down…need to borrow money…need tags for my car….he did it…

I guess that is what I hate the most about lasts….you never know it is your last….

I would love to sit down with him and tell him about my cancer and how scared I was. I would love to hear him say my name. I would like to tell him that he was a great Dad. I think I like camping because it reminds me of him. I like to sing silly songs…it reminds me of him. I am grateful to grow up in a time where big Buicks were what everyone drove. I remember laying on the back rear window ledge and singing as I looked up at the stars on our way home from church. I loved that we sometimes sang in the car and even though my Dad couldn’t sing he sure did try. I love how we would take rides to the woods on the tractor for him to chop wood and I would stack it. I love how that he loved my Mom even though she wasn’t always kind to him. I love how he could build anything. How he was always true to his word. How he never ever backed down. I inherited his bad temper…his tender heart where I feel everything. I inherited his sense of humor, his loyalty, his determination and his unbelievable strength to keep going…never surrender.

I had a good childhood….as you can see by my outfit I was left to my own devices..//but….

Still hoping and praying he says my name one more time….

Today I went to see my parents. They have struggled greatly with health lately. My Mother spent about a week in the hospital and my Dad has spent some time in the ER with horrible nosebleeds.

They live down the street from one of my eldest sisters and she has been taking very good care of them for the last three years but it is getting very difficult.

I have been fighting my own battle and not able to help her as I would like but today I got to go down there and clean and bring them lunch.

I was able to bring a book down that I had made for my Dad and he looked at it several times. He had a really difficult time remembering me today…

He saw this picture….

And he pointed to the blonde girl and smiled and talked about how cute she was….it was clear he didn’t recognize me to be this little girl. I was thankful my Mom did at least. I told him that it was me…and he just stared at me and then stared back at the picture.

One of my favorite memories of childhood was riding in the back of my Dad’s truck. He sometimes would let me sit on the wheel base but I could not tell Mom…it had to be our secret….but now he doesn’t even remember me riding in the back of the truck….

I ran across this picture….

It is rare my picture was ever taken so this must have been before a recital or before I played in church…but my Mother made it a priority for me to learn to read music…

Today, I still enjoy being able to do that….

I cleaned the house and washed some clothes and followed my sisters instructions on medicine for them and then we visited some more.

My Dad today didn’t remember me again…but did my husband. He asked me the same questions repeatedly…/

He wanted me to take him to the police station to see if they would let him drive even though he has dementia….but I reminded him that it’s because of his eyesight that’s why…..and he seemed comforted by that.

He seemed sad and confused when I left…I told him I loved him…and someday I hope to hear him say my name again. He looks at me fondly and tells me he loves me but I’m not sure he knows I am his daughter.

I wish that I could handle this better….but today was hard.

He was happy I brought him fried chicken and mashed potatoes….

I choose to remember him like this….he was an amazing grandfather….

I had a great childhood….

He helped me when I was a single Mom….

He taught me to work hard…:

To sacrifice everything for your children….

And I did that….

And I have no regrets….my Dad taught me to keep going….never give in….never quit.

We were going to go kayaking tomorrow but rain is expected….and it is supposed to be way cooler….so we went today….

It has rained a lot and the river was running fast….

I laid on a radiation table for a month trying to picture this day…and it went pretty much how I expected….a little more sunburn than I had imagined but that’s ok….

I am tired….I needed quiet…:I needed to just go by strangers with them giving me a thumbs up as I rode through a river rapid….it was soo needed.

I have wanted to go down the river in a kayaks for awhile….

I was not sure how my arm would feel but it did just fine and that gave me some hope. After the 9 mile River Cruise I was flat tired…

We saw some turtles sunning themselves…some crawdads….some minnows and some lovely fish….no snakes thankfully.

We then went and ate some Mexican food….because why not?

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We now are back at camp and huge threat of a storm but no big storm as of yet and we hope it stays that way…..

49….going out with a storm seems pretty par for the course….lets hope 50….is a bit more calm

Today at a campsite the tears came down my face that I have not allowed to fall since February….right there….they all fell down.

One fun thing I promised myself after I got through all this was a tattoo to remember this hardship….

As I had scrolled through before on ideas, I had my heart sat on “fearless”. Because I was trying very hard to be brave during each procedure and each treatment and each doctor….fearless is who I wanted to be. I am not fearless….I am strong….I am brave…but I am not fearless.

This morning, in true Segrist camping fashion….it was raining….Normally I like to be down by the river fishing but the rain didn’t allow that. My husband told me as he was praying this morning….he looked up and saw me walking in front of him….and he was thankful because I am here. I am still walking around and sharing this life with him and my kids. My daughter last night as we were headed to the showers and saw a glimpse of my scars she told me that she had forgotten until she saw the scars and we talked about that for a bit….so after I ran across this….

I burst into tears…..because that’s exactly what my husband had just talked about.

Lumpectomy…..Lymphedema….Radiation……..drugs to make it stay away for five years….compression sleeves and gloves…large scars…burning and itching from radiation…but they all saved me….I get to be here because of that….

So even though I hate that sleeve and glove…and my scars and taking medication….I am still here because of it…

So today….I am gonna go down to the river and I am just gonna be grateful….to still know I can watch my kids get married….my daughter graduate….and kiss my husband.

I’m gonna go cry by the river….happy tears!

Thursday, the 9th of May I rang the bell….and I can’t tell you of anything that has felt better.

This closed the chapter of being told I had cancer….having a biopsy and then surgery….all the procedures before it. A lumpectomy and the healing after it. Being told no radiation….then being told 20 rounds of radiation. The vertigo, that lasted three weeks…the lymphedema that made my arm just ache and now has a compression sleeve. The weight gain….the exhaustion….that bell was rung for all of that. After the ringing of the bell and the hugging of the nurses….I did a bit of a self examination. …

I want to run and go work out and get my arms and my legs back to where they were in the beginning….I want to finish my projects…but fatigue is real….and I am learning to pace myself.

I think that is my hardest lesson…this is slow…and if there is any speed I hate….it is slow.

I do not make decisions slow…I don’t do chores slow..I don’t clean slow…I don’t decorate slow../I do nothing slow….and let me tell you…this has thrown me.

My body tells me that it has pain where it never has….it says stop when it never has before…and I’ve never wanted so many naps before.

For my celebration. I had this cake made….by a local bakery called Love and Frosting….

My family got to see the radiation machine I had to be with daily….

So now we go forward….we find a new normal….we talk about other things….we laugh again….we put a creative spin on compression sleeves…we re-discover ourselves. We learn patience….we give ourselves grace. We take naps when needed….without guilt.

We play again….

We clown again….

We do not stop.

I am not the same person I was when they told me I had cancer…once again….life experiences have changed me.

For those keeping score I have almost kicked cancers butt entirely….but her wicked ways have not let go of me yet.

My very debilitating run with vertigo has now vanished and I can’t even begin to tell you how much that has helped …..with just life.

In the early stages of my cancer journey, as we were preparing for surgery they discussed compression sleeves and gloves and I completely lost my mind. Like I believe there is even a video on my private Facebook page addressing this…and I was falling apart. As I have had time to reflect on it I believe it’s because it just automatically points out to everyone that I have a problem. Somehow to me, it says you are broken.

This year was to be a year I turn 50, we go to one of our dream getaways and go to Greece….it was on the calendar! But as many of you know….even with insurance….cancer isn’t cheap…and we got to hang out in radiation rooms and surgery and all the things….

Instead, I still have stickers and purple ink all over my breasts…they itch and they are red from radiation. I have flashed my boobs more times than I can count….and I no longer have any shame in doing so….(for nurses) i felt like I should make that clear.

This is the hang up that I can’t get past….no one knows that I have breast cancer unless you know me. I did not have to have chemo so my hair is still intact, and besides gaining some weight….I appear to be fine….until the dreaded compression sleeve.

I guess deep down inside that day I knew when she measured my arms that I indeed would need it. I knew it was a hang up with me and I knew it was a hurdle I was going to have to jump over and I did not want to do it.

Yesterday when she pulled out the sleeve I was fine because my arm has been hurting soo bad…but when she pulled out the glove….I turned into a five year old and I’ve been there ever since….

In the reality of life is this a big deal? No, it’s stupid to even dedicate a blog post to it….but it’s my feelings and they are valid….and I personally feel its important for those getting ready to go through it that they understand changes that happen to you that you never even think about.

I never paid attention to lymphatic system. When they removed my five lymph nodes I did the exercises after surgery…I kept my arm up and kept moving it….my body said….don’t care…we are going to be difficult….and so they are.

I am still a big grumpy, found a fun sleeve to wear over it….

Purple stains are markings on you from radiation. I have had two this entire time and yesterday I was given three more….no worries I have two more times and they all are off.

In September we plan on taking a trip to Utah. Between now and then my radiation scars need to heal, need to get this lymphedema under control….get back into shape and finish all my projects….

It’s time to live again….almost there!