Solving Problems

CAUTION: I am writing this post to share my honest experiences so far with late effects. I am not looking for sympathy, but I want to be honest. This has been hard, it will continue to be hard. If someone who faces late effects comes here and reads my thoughts, I don't want them to think I happily skip through late effects with little impact. I am a cheerful person by nature and people often misread that for, "Sarah must be doing great!" If you have late effects, I get it. If you are a friend or family member, please don't panic! I am doing fine and I will continue to do fine because I am loved and supported. Now, we can commence with the real post!

I have always been a problem solver. As long as I can remember, I have always been the kind of person who sees a problem and immediately has thoughts running through her head. How do we make it better? How can I help? What needs to be done? How quickly can we adapt and move forward?

It could be a personality trait or maybe it is from years of teaching. I am not sure. I just know that I am most comfortable when I am able to be proactive and change situations for the better.

Growing up a cancer survivor, I am pretty resilient. My "big eye" has always been a challenge, but we have found various ways to cope and overcome the hurdles it has presented. When problems arose, I was always lucky to have solutions in some form. New eye ointment, steroid drops, humidifiers, sleep masks... with time I am sure there will be even more options. My eye isn't "fixable," but it feels as though I can cope and solve small challenges as they come my way.

Late effects, however, have thrown me for a curve. You can't problem solve your way out of late effects: things are not always curable or controllable. I find that my late effect impacts are different every day and present varying challenges. Let me break it down for you:

Hypothyroidism

Hypothyroidism is the easiest to deal with and accept honestly. Quite a few people, cancer survivors or not, live with hypothyroidism and do quite well. I honestly feel I have had it for a long time, it just wasn't diagnosed. I take a pill every day to help my thyroid out and have started tracking my carbs in the hopes I can curb my weight gain. I don't do keto, but I have worked really hard to keep my sugar intake under 100g a day. So far, it has been hard, but successful. I am down a few pounds and feel as though my fatigue is more controlled.

Photosensitivity

Ah, photosensitivity. I really REALLY hate having this one. To put it simply, I am allergic to the sun. Instead of regular sunburns, I get painful and itchy red rashes. Reading stories online, I would say I have a somewhat mild case. I cannot imagine what it is like to have more severe photosensitivity, I tip my sun hat to those amazing people! I hate it for a few reasons.

The first reason I hate it is that people don't get it. When I tell people what I have and that I cannot go out at certain times of the day without taking multiple precautions, they say things like, "Just put on sunscreen, you'll be fine," or, "Oh, I get it, I burn SO easily!" No, you don't get it. No, I cannot "just put on sunscreen." I am allergic to the sun. I get itchy sunburns, complete with hives, if I am not careful. Do you know what that feels like? Insane. It feels insane.

The second reason I hate it is because I am told I have to be "careful" now. Careful is wearing big hats, long sleeves, and expensive mineral based sunscreens. Y'all, I didn't wear long sleeves in the winter... It's 95*F outside? Still have to wear it. Lame. I now live life like a vampire: I am outside early in the day, hiding indoors (except to quickly take the dogs out) all afternoon, and out again in the evenings. If I am not pale, I am red. I don't get anything in between. Cauliflower white or tomato red: My two skin tones!

Lymphedema

Ok, this one has been the HARDEST to cope and live with. Lymphedema happens when lymph nodes are damaged and do not drain lymph fluid properly, causing fluid retention and swelling. In my case, my upper right quadrant is affected. This makes sense because my treatments were directed at my right eye. I have mild fluid retention in my face, neck, shoulder, arm, and right breast. Yes, I said breast. Yes, it was uncomfortable to type, but we are going with honesty here, right? I say mild because I have met people and read other blogs by people who have much more fluid retention than I do. I don't say mild because it is nothing.

One thing I have struggled with in regards to lymphedema is the constant reminder that it is there. Every day, I put on a sleeve and gauntlet and attempt to do normal tasks while wearing this ridiculous getup. Do you know what it is like to cook in a gauntlet? Do dishes? Water the garden and get it wet? Go to the restroom? Go to the store during a COVID pandemic wearing one white surgery glove, like you are a medically inspired Michael Jackson? It is ridiculous.

The physical therapy is also hard. The cost alone is frustrating, as it isn't covered by insurance. Huzzah! Pair that with the stretches and manual drainage massages that have to be done every day... It is a lot to remember! I really am thankful for my amazing physical therapist, but I cannot say I enjoy going every week.

The hardest part, however, is the acceptance. I am still working on that. Lymphedema is not something you cure, you simply maintain. If we do things right, if I wear my sleeve consistently, if I do all the stretches and manual drainage massages every day, then maybe, hopefully, my lymphedema won't advance. It won't go away, it won't get better, it just will stay where it is at. That has been hard for me to process, that this is a lifelong hurdle. I am not there yet, but I am working to process, accept, and plan ahead better.

So, What Does One Do?

This is where problem solving comes in: The biggest struggle for me right now is the inability to solve this late effects problem. Accepting that this cannot be solved, that I just have to adapt, control what I can, and accept the journey. I have learned that I am not someone who gives up control easily. I pray, I process with friends, I write, and I do a lot of self care and yet, I still have not been able to accept this isn't a fixable problem. That I need to think more about where my future is headed. That I need to be prepared for other late effects to jump onto my crazy train.

So, what does a problem solver like me do with an unsolvable problem? I don't exactly know, but I do know the following has worked for me:

1. Solve something. ANYTHING that you can. For me, it is my diet and weight. I can control those things. I can improve something that may impact other things and make things a little easier in the long run.

2. Be an advocate for yourself. SPEAK UP and share your thoughts, feelings, and concerns. I have often hesitated to speak in the past, but now I am much more confident and involved in my health journey. Trust me, if you have the right medical team backing you, they will listen.

3. Laugh, laugh, and laugh some more. BEING POSITIVE MATTERS! It won't fix everything, but walk away from things that cause unnecessary stress and embrace more joy. I gave up Facebook and spend more time with my dogs. I also have a Pinterest board with jokes I share with some friends.

4. Self care, folks. SELF CARE. I have found my priorities have shifted and the world is still spinning. I leave work at the same time every day now and am still able to teach my heart out. I take time to do art. I have set aside time for prayer. I am getting back to blogging. Whatever your self care is, do it!

So, to all my friends with unsolvable problems, I get you. Take it one step at a time, allow yourself to feel all the emotions, and keep up the good fight. We may not have an end in sight, we may not know where we are going, but we can wander around aimlessly together and maybe there will be some pretty scenery along the way! :)