What I Have Learned During Treatments

So as anyone reading this blog will know im undergoing treatments for both stage four endometriosis and endometrial carcinoma. The side effects are brutal and I have been experiencing and learning a lot both good and bad and want to share. I hope this will help those who either are going through treatments to feel that they are not alone or those who know people going through long term treatments to understand some of the underlying feelings. First I want to share with you the side effects that happen in more than 60% of patients on the medications I am on. I have expiernced just about every single one of these. Some on a daily basis.

Fast irregular heart beat, excruciating deep bone, muscle, and joint pain, loss of bone density and predisposition to fractures, numbness in the extremities, anxiety, depression, mood swings, increase facial hair growth, and scalp hair loss, temperature regulation issues (feeling extremely hot and then extremely cold), swelling of feet and legs, weight gain or weight loss, trouble sleeping, chills, fever, shivering and or convulsions, sore throat, nausea, vomiting, extreme fatigue, breast pain, dizzyness, migraines, muscle weakness, confusion, memory loss, loss of balance, rashes and dry skin, decrease chances of fertility, itching, lower immune system causing slow wound healing and inability to fight off infections, changes in nail texture of loss of nails, mouth sores, easy bruising, wide spread nerve pain, muscle atrophy, bitter taste in mouth causing lack of appetite, sensitivity to noises and smells,

So know that you know what the last month and a half have felt like have what the next 4.5 months have in store let me tell you what I have been learning....

People will call you strong

 Most the time this is a very welcome complement but other times you'll wanna slap the person in the face and yell " well I didn't really have a choice did I?" but... most the time it's appreciated. So if your someone trying to say to help a friend go ahead and say it...  

You will have a greater outpouring of compassion then ever before

This has been one of the things that keeps me going. I have had friends I lost connection with years ago contact me, I have had acquaintances I barely know offer to pay for treatments, buy me wigs, fly out and stay with me, or go to treatments with me. I have had strangers tell me my story has pushed them to get help or inspire them and asked if they could share about my journey. I have gotten cards, gifts, flowers, and money. I have been humbled beyond belief to see how many people care. I would never have never experienced this otherwise. And it really does help. So people... write that letter, give that gift, send that email or private message etc.... its not weird. You may hardly know the person. No grand gesture needed... but knowing people care is so so so powerful!

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People will surprise you

People you would have thought would be the ones there for you every step of the way will fall to the back burner. Some will shock you with their lack of support and empathy. And it will hurt... deeply. You will feel as though you've been led to believe a lie and that they really don't care for you as much as you had thought. Just remember...they usually can't fathom the consequences of their action or may not even realize their actions at all. They are fighting their own battles and just don't have the energy for you. Don't take it personal. It about them not you. But others will step up. People you probably didn't expect... I have had 3 in particular. Who went/go above and beyond to show they care. They are purposeful about checking in and keeping an eye on me. They notice when I grimace or when I leave the room quickly cause my meal isn't sitting. They remind others what I am going through when they are being demanding. They push me to take care of myself when I am trying to power through like nothing is happening. People like these will touch you deeply and you will grow closer to them then you ever would have if you staid healthy. They are your heros. The ones that keep you going.

You will get mad at stupid things

You'll get mad because a friend is telling you about their plans through text and you know your gonna be home trying to decide if you have the energy to make yourself dinner or if your gonna go another night without cause you don't have the energy to stand up one minute longer. Then you will get mad at yourself for being mad at your friend cause you know its not their fault and you're being ridiculous. You'll be mad because getting up in the morning is really hard and that just pisses you off. You'll get mad cause someone say the wrong thing when trying to comfort you. You'll get mad when some one doesn't say something. You'll get mad that you have to work. And you'll get mad when people ask you why you don't take time off. You'll get mad at your dog for needing to pee when you don't want to go outside any more. You'll get mad at the dishes for needing done, or your body for hurting. It's okay... be mad... but be mad alone... These feelings will pass but things said when your mad won't go away. If you mad excuse yourself from the room or conversation and revisit the situation when your level headed. Scream in your pillow or into the wind... not at people.

You will beat yourself up

You'll get frustrated that your not stronger. You will compare yourself to others who have it worse then you and you'll feel guilty. Then you'll get mad at yourself for being too strong... for pushing through the pain and then getting home and being completely overwhelmed with exhaustion and pain. You'll be mad that you didn't appreciate your healthy body more. You'll get anxiety about how you should exercise, or meal prep, or get that last task done but you just can't... So you beat yourself up. You'll stress yourself out. You'll feel like your failing. When this happens remember... your treatments are temporary and terrible... it is okay to fail a little here and there.

You will find joy in things you've never noticed before

Perhaps it's the drug induced emotions... but I think there is more to it. I have found myself moved to tears at little things I took for granted before. Someone offering a helping hand, my understanding co-workers, the blessings of being able to do what I love for a living, having the financial stability to buy a comfy couch, the smell of the air after in rains, my horses trotting to great me, people caring about me for no reason other then the fact they just do, God's power and love for me, health insurance, family, the story's others share with me... It like all of this has made me stronger yet softer. Perhaps it is because physically I am forced to slow down so I take more in, or maybe it's because this could have killed me and that makes the blessing of life a little sweeter idk... but it is a blessing all the same...

You can function at a point of exhaustion you never thought possible

My symptoms are long and ongoing.  My idea of "good" has changed. People ask how I am and I say good if I didn't throw up in the morning, I have a headache instead of a migraine, and my body only hurts when I am moving. And that become okayish. I've learned to cope with that and that has made me both stronger and more compassionate to others.

People will try to compare their stories to you

Unless you have experienced exactly what I have just stop. People will try to compare whatever illnesses and ailments they have ever had to mine. Even if this comes from a place of wanting to show you understand most the time its destructive. Don't compare your pain ever! You have no idea what I am going through or how a feel. You have no idea whose pain is/was worse and frankly it doesn't matter whos was "worse". Trying to compare often gives the impression of trying to one up the person your comparing to. This only makes the person who is currently struggling feel weak and like they have to justify feeling like crap. Like they should be stronger cause they could have it worse... trust me... everyone struggling with any kind of pain already compares themselves to others enough and beat themselves up for not being stronger... don't add to it. There is a right way to share your advice based on your experience... Do it at a completely separate time. Not after the person who is struggling just told you how shitty they feel. Be sure to emphasise that you don't know exactly what the other person is feeling but that you experienced ______ and ______ helped you and you wanted to share just in case they'd be interested in trying. If you aren't coming from a place of trying to share something to ease a struggle don't share. Don't compare. I had a wonderful women who also had cancer send me a long email about things that helped her. She shared her tips and experience but never one upped my situation, told me it would get better, or it could be worse. She simply shared what helped her. That is constructive sharing... It is not constructive to ask someone how there feeling then respond "yea, I am ___ too" or "Yea, I feel like that all the time" cause... you don't. Everyone is different and you have no idea how i'm feeling. I have done this to others and never really realized how destructive it can be till I was on the receiving end to such an extreme. It really sucks.

You will enjoy parts of the journey and that will surprise you

Some of this has been listed above... but through your recovery you will be poured into, you will have opportunities you never did when you were healthy, you will appreciate the little things more... Treasure this, milk it for all its worth... take the time it takes to smell the rain. Let yourself be loved on. These become your "reason" for the journey... your silver lining.... take it all in.

Being strong sucks

If your like me, rolling over and quitting life for the duration of your treatments isn't an option. So you get stronger. You grit your teeth and smile. You cry only when no one is around. You stand up straight when people are looking but gimp as soon as they turn around. You rally at the expense of your body. And because you put on a great show people don't take it easy on you. People expect you to carry on like you did before treatments. They forget what your going through. And it is exhausting... Living the same life as before with half the energy and immense pain. It's like you get punished for being strong. People stop trying to help or don't look any further. So for those of you who know someone going through rough seas... just cause they act okay doesn't mean they are. Still offer help, still be understanding, still check in, being strong is much harder than being weak... support them. They deserve it even if they don't ask.

You'll cry.... alot

I am not really a cryer... but... well maybe I am now... I cry because something went well, or cause i'm thinking about how much I care about something, or cause i'm hurting, or cause im mad... who knew one person could cry so much.... but I don't mind... seems there is something healing about tears.

You will feel extremely lonely

This has been one of the biggest kickers for me! During the day I charge full force ahead. I don't let myself dwell on the the pain or emotions. I can't... I would fall apart. So I fly through the day like nothings going on. Then when i'm done around 7 I collapse on the couch or in bed. And it all comes flooding in. I often hardly have the energy to make dinner or turn on the tv much less to reply to texts or phone calls as much as I appreciate them. So I sit there tired and lonely. Wishing I had someone just to sit with... but back to that being strong sucks  things... I don't want to impose or ask for company cause I know people can only give so much so I sit... I pray... and some days that really helps... others I still feel lonely. I suppose that's part of this. So if your someone who knows a person struggling... particularly one whos normally an extrovert. Ask them if they like company some time ahead of time... then be in tuned... if it seems like they have had a tough day text them that your coming over unless they don't want company then show up. Worse thing they can do is tell you no when you get there. Then just sit with them. turn on the tv or read a book. Maybe start a load of laundry or do dishes if it looks needed. This is really for those of you who are close to the person. If your not close and feel like they may feel the need to entertain you or not tell you if they need alone time proceed with caution.

Everyone will ask you how they can help

It is like something everyone say when they don't know what to say but it is confusing cause you don't know who means it and who doesn't. Some people say it but if you ask they will feel imposed upon. Others mean it... but typically cause you don't know who is who you don't ever ask for help. So for those of you who mean it try being more specific. "would you like help with chores today?" "Do you have any laundry that needs done?" "Do you have meals for the week?" for those of you not close enough for that kind of stuff "are there any care products you are running low on I could order for you?" "What can I pray for you about" "Do you have any emails or papers I could scribe for you over the phone?" etc etc

You will inspire people

Your actions will be magnified and you will be given a platform to share advise, hope, and love. Watch your step... you could be changing people's lives. Take this on and power and courage and inspiration. Fight the good fight how ever you can and you never know whos life you'll change because of it. What great power and opportunity. Use it wisely. 

No Hair, Don't Care

So, as many of you know I made the plunge and shaved my head last night. I did so not because I had hardly any hair left but because I was starting to lose big patches and it was affecting me mentally. Every morning I would wake up to another clump on my pillow. I'd brush my hair and there would go another. I would showers and there went some more. Hair was decorating every room I entered. It was clogging my drains and covering my apartment.  If I brushed my hair just right you still couldn't tell because, as many of you know I had a ridiculous amount of hair to loose before I went bald even if I was losing clumps. But, if the wind blew or I flipped wrong I had huge bald spots running down  either sides of my head and one large one in the back of my head. Yes I probably could have held onto it longer. Changed my part a million and one times and maybe I wouldn't have even have lost it all, not everyone does.... But that wasn't the point. The point was, every time I lost a chunk I was reminded I was sick. I was reminded I was losing my one most complimented physical attribute.

My boss had some of her employes in town , one of whom is recovering from breast cancer. We were introduced and started talking. She told me about when she was losing her hair and how hard it was. How after she shaved it she felt so free. Like me, she did not wait for it all to fall out. She took matters into her own hands. The way she shared how it made her feel reaffirmed what I already knew. I needed to face this head on. I am not a wait and see kinda girl and this was affecting my emotional state.... my hormone treatments are doing a good enough job of that themselves so I decided I was gonna face this head on... literally.

I sat with Tami Saturday evening and contemplated if it was time. She told me "I can't make this decision for you". That I already knew.... So with a deep breath I let out the phrase "It's just hair!... right?" She looked back at me and with a smile said "Yup, it is just hair." And in that moment I decided to go for it! Put some makeup on and set up the video camera (I may or may not be uploading that video at some point).

I blasted my "fight like a girl" playlist and off we went... it went... My hair went of and around and down into every crack, crevasse, and crease in the vicinity. Tami's hands shook as she shaved me bald but her friendship kept me steady. We laughed and joked and cried. I didn't so much cry because of how I look... because, let's not joke, I look kinda badass if I may say so myself . I cried because losing my hair made it all so real. It hit me with what this all means for my future near and far. The opportunities these challenges will bring and take away. And not just for me... this made it real for everyone else. This invisible illness that has haunted me so long was now visible. This was both saddening and empowering and overwhelming all in an instant. So I cried for a moment and then I took a breath and pushed on.

The next thing I did was video chat with my family who were all supportive but more or less speechless at the occurrence of what had just happened. I posted on facebook and had no idea the response I would get. I posted to my wall and to an endometriosis support group. In less than 24 hours I had 1020 likes and 223 comments. 4 people private messaged me to tell me I was an inspiration, two people told me they think they have endo and didn't know until reading my story and now have Dr. appts or are looking for a Dr. to help them. 8 friend requests from people asking if they can follow my story to give them hope. I have had more people tell me I am brave and beautiful in one day then probably ever have or ever will again. I sit here in tears from the outpouring of support and love. To think I thought hair was such a powerful attribute of mine only to find that without it God is working in ways I never dreamed possible. I am humbled and baffled at this response for I am really not too brave or all that strong. You can ask the ones closest to me... I am actually quite a wreck about 90% of the time, flying through life by the seat of my pants!

Somehow and for some reason God is using me in ways I never imagined. He is giving me the strength, that I could not have on my own, to see the blessings in my life through the struggles. To see the opportunities through the pain. Yesterday I lost my hair. I have a life long disease. I am going through treatments whos list of common symptoms alone could make you sick. But sitting here... my joints are aching, my stomach turning, but my heart is still. All I can think to myself is a phrase written by a man who truly is an inspiration. A man who had a son die of pneumonia, 4 daughters die in a shipwreck,  and who lost his business in a fire all in the same year. This man's name was Horatio G. Spafford and some of you may know his work. It goes a little like this...

When peace like a river, attendeth my way,

When sorrows like sea billows roll

Whatever my lot, thou hast taught me to say

It is well, it is well, with my soul 

I do not deserve half the compliments I have received in the last 24 hours. But if I honestly have inspired one person to keep fighting, if I have helped one person find their diagnosis, if I have lead one person to realize they are more than what they see in the mirror, or if I have helped one person find peace through their suffering... Well then God has made all this pain and these struggles worth it and it is well with my soul.

I won't stop here. I will keep sharing and educating in hopes to make a bigger difference in the lives of others. I will keep praying and keep fighting. Endo wont stop here so neither will I.

I also wanted to put something out there... I started losing my hair from the ad back hormonal therapy for my endometriosis before the chemo agent even started to kick in. Cancer sucks but mine luckily was caught early. Cancer was/is a blip. It will be here and, fingers crossed it will be gone again in no time flat. People see no hair and they think cancer. Cancer has so much power behind its name because people know what it is and what it's treatments do to your body. One of my goals to help get that understanding about endo as well. The list of symptoms caused by my endo treatments are longer than the list of symptoms caused by the cancer treatments. Cancer is no small thing. And I am not on some of the cancer "big gun chemos". I am not trying to be little cancer at all. But what I am saying is that endo is also a big thing and it is a lifelong thing. So when you see bald don't always think cancer cause there are a lot of strong women in my support group who lost their hair and struggle every day with "just" endo as well... and that is no small thing...