The Reluctant Red Nose

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!

Today I wasn’t dizzy for the first time in three weeks. I was able to complete Radiation today like a normal person.

I would love to say that I will learn from this and be grateful for each day because I know what it is like to have something debilitating. For the next few months and maybe couple years that is true….but sadly, we all forget our hard lessons sometimes and we just get caught up in our daily lives.

I sat by a lady yesterday before radiation and she had to do about seven rounds of chemo and 33 rounds of radiation and drive 80 miles one way to come to Radiation, and in that moment….I felt two inches high. No matter how rough we have it, there is always someone who is fighting harder….

When this all began I was angry….I wanted to know why….I was thankful for the diagnosis and the outcome but had no desire to go through the long and painful process. Cancer sucks and there is no other way to say it. No matter how small it is…it is a lot.

I have discussed the kindness of the nurses I have met and I can honestly tell you I haven’t met a mean one yet in all the doctors offices I have been to in the last four months. They have been so kind and so caring.

I have realized that no matter what life gives you or how dark the spaces you enter it is up to you to be a bright light.

When I walk into a radiation room with a big machine that scares me and certain pillows that are made just for me…and the four nurses that wait for me when I get into the room each day to attach ALL the things ….it can be scary. I have memorized the rotations…and when the table moves to get you where you need to be to get that perfect “ray”, and I am now ok with that. It doesn’t scare me as much…I find comfort as I hear them tell me to take a deep breath through the microphone …even though I am all alone in that room I know that they won’t leave me…that at that moment I am their biggest priority…and they even tell me great job….every time….…

In those moments I’m all alone I think of my kids, my husband, my friends…and crazy things like wanting to itch my head. I also get weepy….sing songs in my head like “be a fighter songs”. And sometimes….on Fridays….

I bring my Emotional Support Chicken that was sent to me by my “clown momma” and it has literally gone to Radiation with me.

The part that I was most upset about was not being able to clown since January…..I had all these new schools set up and had to cancel them all….so since this is where I am….I decided that this is where I am gonna bring some smiles….

I gave them their own little tiny support chickens as well….because it’s not right not to share….

In life….we will always have hardships…it’s practically a guarantee….most days I don’t feel like smiling….I am tired….I would like to whine ….but I cannot quit….too many people rely on me.

My dad just celebrated his 90th birthday this past Sunday and we got to share the day with him. When I walked in he asked who I was….and normally this would upset me….but I know he can’t help it and it’s ok. He then started telling a crazy story that made no sense because that’s what dementia does…and instead of correcting him…I just went along with the story. It was quite creative… my deceased uncle kept walking into room after room and was losing $100 each time….of course I had a lot to add to it…because that’s the whole point. You can’t correct them…you use humor to relax the people listening (aka my Mom who kept trying to correct him) and you then redirect them back to reality without them ever knowing how we got back. I will say I used to think I got my creativity from my Mom…but after some of these stories I am no longer convinced.

I could go home sad they he didn’t remember my name but always my husband….or we could laugh about it…

Life isn’t fair….it isn’t fun…it can really stink….but in the pit….find the good….be the light….be the joy….because in the end, it’s gonna hurt one way or the other anyway…might as well make a few friends smile on the way….

Today my dizziness is back….I am just thankful that I got through two services… so played today and I was grateful because one of them is my absolute fave song.

I made it through my first week of radiation. I was a little red and had some shooting pain which the Oncologist said is perfectly normal. Having some issues with my left arm being numb, pain in my shoulder due to how I have to lay my arm during radiation and still worried about swelling. I’ve been having g to make myself sit down and rest….and I really want to go go go.

I have one more project to get to before we head into summer. I also have to do Ellie’s grades and post those and refresh her transcript. We haven’t got her DL yet but that’s not her fault….just circumstances right now.

In my journey of health struggles and cancer and all these things, I am once again reminded of how things come across to people.

I know that there are things I have completely decided to change how I will approach this with others in the future. I appreciate people praying for me…and I appreciate people telling me they are as well. I kept thinking during church today what exactly God would like us to expand that. I believe He of course wants us to pray….but I think He wants us to do more than that. Those they tell me they are praying for me….but then ask me how I am doing. How is radiation going? How are you feeling? Are you tired?

It doesn’t have to be a gift….just a text….a conversation….a little conversation….a silly text…a hug…a compliment. In thinking about this I realized how I myself do this poorly.

I never tell people I am praying for them until I actually do….but I feel that extra step is what God means when He says “share one another’s burdens.”

Having a friend make this meme for me this week made my heart soo happy….

Having a nurse hug me and tell me I’m a sweetheart kept me singing through the rest of radiation.

Having ny fellow band members give me the fist bump after playing today….

All these things that we do to each other and for each other help us through the days that are so tough we don’t want to try anymore.

Life will always have burdens, there will always be struggles and there will always be a time when we feel that the bad times will never be over….the valleys grow deeper, the mountains grow higher….the depths become more vast…and I feel that I may never recover…but the days of struggle will be over. We will invite the mess, the ugly, the scars…the changes….and what once seemed overwhelming…..we will be able to look back at it with nothing more than a nod….

I made it through that…I almost went under…still I rise…..

I have now done two Radiation treatments. For all the ladies who feel better about themselves by talking about how easy it is….goody for you. I have spent my life being polite to strangers and I’m not sure if it’s age or it’s cancer but I just do not care anymore.

I am a Generation X. We do not talk about our feelings, we don’t cry, we don’t discuss these things with our parents…we sweep everything under the rug. We just do what needs to be done, but I am realizing that this is bigger than me…and if I don’t discuss it I will lose it mentally.

Here is the truth if you are getting ready to go through Radiation….

1. It’s a lot. People try and act like it’s no big deal but getting up on a slab of metal everyday and having machine twirl about you is a lot.

2. It’s a lot to have stickers and xs and purple markers all over your breasts and tattoos for radiation. You feel like a tic tac toe board.

3. It’s a lot to lay there naked from the waist up while two strangers line everything up. Then when they lay things on your scars…and talk about your scars.

4. It’s a lot to hold your breath and keep that in the green box, to have a machine taped to your belly.

5. It’s a lot to have to just throw off your robe in a room and then make sure you remember to put it back on!

6. It’s a lot to go to an Occupational Therapist and have your arms measured and then be told you might have to wear a compression sleeve.

7. It’s a lot to be taken down corridors and halls and to remember where you need to go.

8. It’s a lot when you hear things like “surgical arm” and great care that needs to be taken. Lymph node massage…. .

9. It’s a lot when you realize half your breast tissue is gone.

10. It is a lot when you realize your life has changed forever and things will never be the same.

My nurses and physicians are amazing people and I can’t say enough wonderful things about them.

The fact of the matter is all of these treatments are weighing on me mentally. It is a lot to take in and many days I want to run away.

There’s a lot of unknowns, there are a lot of things I could work myself in a frenzy for…but I just refuse to do it.

This week, I am getting my bearings….and if I have to wear a compression sleeve then I will…but life will go on.

It is a lot to realize that cancer stops for no one….that life still goes on. Bills still need to be paid and your kids still have events.

My mind right now feels like it’s racing….trying to meal plan and grade papers while making sure bills are paid for home and our store….at same time trying to get our daughter through her sophomore year and prom and driving and all the things. Also, just for fun, I’ve been dealing with vertigo for about two weeks and it is more fun than you can imagine. When the weather changes, like we get a storm, it’s even more fun.

I do not have to have chemo….i do not have to deal with losing hair and all the horrible things that go with chemotherapy, but no matter what you have to do in your cancer journey…it is a lot mentally.

I appreciate the people who send me texts and tell me I am strong. I appreciate the hugs (from the right) I appreciate ridiculous memes and videos sent to me….especially after I get out of radiation. I appreciate the texts asking how we are doing…the making of meals….you all are my heroes and I appreciate it.

My mind right now needs to settle and I am having a really hard time doing that….when I go to Radiation, I feel my brain is scrambled….and I forget the dumbest things….like yesterday…

I walked into the Radiation room and remembered to take off my gown….did radiation….she helped me get off the table…got down….put my watch on…and proceeded to walk out!!!! With NO GOWN on!!!! What is happening?!!!!! The nurse looked at me and told me she would have stopped me….what in the world?!

So as we go forward, I am praying for my mind to settle….to just get in the groove and ride this uncertain ride with calmness of heart…take the punches when they come…and just ride…because worrying about it will not change it.

Music has always been the way I work out my feelings….thankful that I can still do that!

I sat there and tried to persuade her to say No Radiation.…but I knew better even when my surgeon said there wouldn’t be any….I just knew.

I had a lumpectomy and this is how they treat it…this is what they said from day one so why I thought it would be different I don’t know.

Twenty sounds like such a BIG number. It feels like a lot especially when they tell you every day. I had one wish….that I would be done with all this by my 50th birthday which is in May….and I will be done about a week and a half before that day….so she thinks I will still be recovering but pretty close to done. I have a big camping and fishing trip planned….and I really hope that that can still happen.

I will not tell you that when your oncologist has you lift your arms and sees your left breast and says…yes I see we have some issues with this one…and you know she sees what you see….I am now scarred and maimed…that’s what it feels like. I wish I could say I feel like a warrior, that I feel strong…but I don’t. I’m not a warrior…I just want to make soap and bread…I want to make little kids laugh by using my red nose…I want to fish and camp and explore. I want to quit being poked and I never want to hear the words…”hold your breath” However, that is not the cards we are dealt today.

She once again goes over in greater detail that I need to protect my left arm against sunburn, bug bites….all sorts of things so that I won’t have lymphedema. No sunburn, no poison ivy…no scratches…ugh.

I then went and did an MRI where they planned out exactly where the radiation needs to go…marked on me with a marker and added stickers that I get to keep on for at least two weeks. It was a lot but she told me exactly what she was doing as she did them. I am also claustrophobic but thankfully this was a open machine so it was easy.

I appreciated that the nurse told me it was a lot and they would help me every step of the way…that I didn’t need to worry about a thing.

I know my hair will not fall out. I am not having chemotherapy . I know that I didn’t have a double mastectomy, but a lumpectomy is not a walk in the park.

As I lay there today…many thoughts went through my mind. I am grateful for life…grateful that it isn’t like some women who lay here and pray that the radiation and chemo are enough. Worry that it will save them…their fight is brutal. They are literally fighting for their lives. I feel selfish whining….I feel selfish to complain…

But to deny the pain and anxiety this has caused would not be fair either.

I think it’s important that each cancer patient have their moment. Some say you can’t sit at the table unless you carry all the burden/..and that simply isn’t fair. No matter what stage or grade your cancer is…the word cancer is still scary. The burden is heavy. The journey is yours.

Many look at my journey and say…you will live…your diagnoses is good…they caught it early….and for those things I am grateful. .

However, I have scars…and there has been tears and pain….and my body will never be the same.

I have become even more grateful for nurses . Even more so then when I had both of my children. What a difficult job they have and I am grateful to each one who has seen me at my worst and made me feel human.

So we gear up for another fight…determined to win….and as my oncologist would say…”you can do this.”

In this cancer journey…one word I would constantly use is the word unexpected.

I could NOT have planned everything worse than I did….worry about the wrong things and anticipate pain from things that were NOT painful and NOT understand the things that were EXTREMELY painful.

I have also learned that while women are amazing comforters and give wonderful feedback….they can also be the absolute Negative Nellies.

You have the women who had a lumpectomy and made dinner that night….this I personally don’t believe because I don’t even remember the drive home really…because I was still hung over from my antihistamine ride from my allergic reaction during surgery. There are the women who returned to work in three days…and then there are the women like me….who had five lymph nodes removed as well….and two large incisions….some of us just take longer than others because we have more that needs to heal. There are no gold medals given in this category….just go at your own pace.

There is a remarkable amount of information given…there are large things to weigh…there are several options. Everyone has a “professional” opinion. I’ve heard all the things….”reject the hormone blockers and radiation, only a grass fed camel diet will save you.” Ok…that’s an exaggeration but you get my drift.

I’ve been told that if I have radiation and the cancer comes back I can’t have reconstruction…but the surgeon looked at me and said it CAN be done….difficult but it can. Then my sister tells me she couldn’t do reconstruction because she got several infections….so …..it can really make you want to run away.

So today we went to my surgeon. He is confident he got all the cancer. I like my surgeon but today he irritated me….he gave me false hope and it’s been nagging at me all day.

I have DCIS in Situ Grade 3. What does this mean? It means earliest form of breast cancer very treatable. What does Grade 3 mean? From what I’ve read it means fast growing….but I haven’t had that verified by any doctor as of yet. My type of cancer is estrogen fed.

My surgeon has said from day one…radiation and hormone blockers….and mammograms every six months but he won’t start that up until February of next year….then he said he doesn’t think I need radiation….and for a mere moment I heard birds sing….and then he said…but we will wait until we hear what the oncologist says. So, there it went….right out the window….my good mood went quickly went away and matched the very grey and cold day we are having. Something I’ve been prepared for and wrapped my brain around….now I’m told …..maybe not…..why say it? Why give false hope? Why?

In that moment of relief and elation of just being able to close the book on this stupid chapter….I thought to myself…I remember how this feels….and then when he took it back…I remember sitting there like…I want that back!!! Come back!!!

It was then that I realized ….it doesn’t matter. Radiation or no….hormone blocker or no….reoccurrence next year or no….how do you choose to live?

Do you want to waste your time on this earth reading every article on how to cure cancer? How to prevent cancer? Or do you want to just live?

The truth is I may do all the treatments and all the things….and it may come back…it may come back with a vengeance….but am I going to continue to live like I am dying….or choose to just live.

I look at pictures of Greece and I can’t fathom going there later this year. I haven’t let myself even think about camping, fishing and travel…or clowning or any fun thing coming down the road.

Every morning I wake up, constantly worried about my business, my kids, my dogs, my daughters ACT score…her drivers license, her driving….my son in DC….it never ends…my husband and what if he gets sick….all of the things.

Yes, it’s possible cancer comes back and I can’t have reconstructive surgery because I had radiation and now for the rest of my life I’m a flat chested freak (but I was already pretty flat chested) and I just can’t worry about any of it anymore.

So, for now we wait to hear back from the oncologist who is supposed to call tomorrow to set up an appointment and we sit and do what the oncologist says…and we quit worrying…we get back out to nature and start working off this weight we gained while doing nothing but recovering from surgery….and we get back out there.

We come armed with new hobbies that are distracting and fulfilling . We get off our phone and enjoy conversations and we forget about this chapter and be grateful it was only one short chapter….and we move on….