Remaking the Holidays

This year has led to so many changes in our home. Going through weeks of radiation led to another shift in how we approach our days. With the holiday season approaching, it also became necessary to look at our traditions and consider changing things up.

We must be willing to change where we are now to get where it is we want to go. 

It is not enough to say, "This is what we have always done." That is a poor reason to do anything in life. Break down the day. What things serve you? What things fill your soul? What actually matters to you? And what no longer works? 

If something no longer works for us life, we realized it is ok to look at changes that more accurately reflect who we are now. This can mean changes in who we spend time with, how we spend your time, and even how we celebrate. I used to prepare an extensive meal, decorate elaborately, and even do most of the housekeeping. None of those things work for our family any more.

This year, we are changing most of our holiday meal. We are changing when we have family and friends visit. We are changing our gift giving to reflect where we are now. We are taking away things that pull away from what it is we want to accomplish, while leaving room for those things that matter most. 

We need to have reasonable expectations of ourselves and others. 

As we have shaped how we are approaching the holiday, we also needed to set some reasonable standards that reflect our priorities. It is unreasonable to assume that we are the same each day. It is ok to adapt our expectations to the situation. 

High stimulus environments wear me out much faster as I work through layers of light and sound. We have young children in our fmaily, some events are simply not a good fit for us right now. It is ok to adapt how we interact and what we interact with to reflect who we are. 

No apology. No explaination. No agenda necessary. 

When we are adaptable we can expereince the holidays as we are and instead of meeting the expectations of others, we are able to authentically engage with our world. We are able to do what matters most to us, and enjoy this time for celebration as we are today. 

Moving beyond what was, is encouraging us to try new things together. I couldn't be more excited. 

TBI and the Kitchen

Providing and caring for my family, at even basic levels is very challenging. I used to cook an extensive and well thought out menu. My husband and I, at one time, ran a very complex group home where I cooked daily for 10-12 persons. I also had to organize and complete all shopping. Prior to my craniectomy I had a 5 week, nutritionist approved menu with associated shopping list, divided by store. Now, I'm left to only short and simple recipes.

In talking about this challenge with my sister, I realized that everyone struggles with making dinner and what to make for dinner. There are multiple sites that address this; sending you daily menus for minimal fees, structuring your shopping list, etc.

I have already, for myself, learned to work within mostly what I can do and now make fewer mistakes. Due to the trauma of my surgery and the injury from pressure, I can make only the most basic things and my husband and children help me, every day. I have everything written down and simply restructure it based on day and need.

There are some basic rules to help you get started.

• Cooking for my family is an all day event. I complete prep work throughout the entire day as part of my OT and PT homework.
• I plan very simple meals on days that I have rehab sessions or other external stressors.
• Rest when planned, don't do too much at once.
• You will make mistakes. Mistakes are adventures.
• Always have a backup just in case; cereal or canned soup and sandwiches work great.
• Organize your space. Eliminate or minimize distractions.
• Check ingredients and pull out everything you will need to cook your meal. Put it away when done, this can help you track what step you are at. 
• Break the job up into tasks of no more than 5 steps.
• One task at a time; no more.
• Write it down. This is where I make most mistakes, I lose track and forget or double steps. 

So, there you go. How to cook with a brain injury. Experiment. Have fun. And keep a sense of humor, it helps.

One last tip. Siracha sauce is magical. I have some nerve trauma so many foods taste like children's paste. I enjoy foods based on texture and temperatire. I have some taste sensation, but to really "feel" my food, spice adds a chemical component that I can sense. Sushi is my happy place. 

Changes and Radiation

What a busy few months. My annual review this year showed growth, only instead of growing out, the tumor grew in. In between my cerebellum and brainstem. My appointment with my neurosurgeon lasted about 5 minutes, with a referral to Huntsman Cancer Center being the end result.

We met with the radio-oncologist to discuss my case and were urged to wait no more than 6 months to begin treatment. We chose to begin treatment in early September, it presented the least amount of possible disruption to the family and the kids.

I learned  that there are many types of radiation, some better for certain tumors, others for location. Gamma knife, Proton therapy, IMRT...so many ways to administer what the body needs to destroy the invading cells in order to allow the body do what it does best, heal. My treatment consisted of 30 sessions of IMRT radiation, or six weeks of daily treatment Monday thru Friday. 

It Takes a Village

I had so much help during this process. Rides to treatment, help with my kids, help with meals (we prepared in advance as much as we could). I was able to use a volunteering site to help track and organize information. People could log in and help where able. 

I am so grateful for the small and sometimes not so small ways that people reached out. My family, from out of state came to visit, which was wonderful. I had friends step up on days when my treatment conflicted with times when my kids would get out of school. My husband changed his work schedule to e with me when he could. When he couldn't be there, I had friends step up to help with rides to and from treatment. So much love, so much concern, so much real help.  

Treatment

My appointments were about 30 minutes away, and averaged between 10-15 minutes in length. I got to wear a mask fitted to my face that held me in place and bolted to the table. This helped ensure that the beam was placed exactly where it was needed. 

I had an amazing team of nurses. They offered support, advice, professionalism and friendship when I needed it most. My treartment team has a tradition of giving flowers to one patient each week. There were days that those flowers brightened my day. 

The first two weeks all I noticed was that I didnt want to eat, and that I was tired. I have been working to regain endurance and feeling this level of fatigue was discouraging. I tried to stay focused on the outcome. I was going to heal, fully. My tumor would be broken down my my body and elimintated. My son said that the beam was like a lightsaber, burning the tumor so it would die. His dad and I agreed, that was exactly what it was like. 

The last weeks I became more tired. Early bedtime. Naps. Simple tasks. Low stress. Nutritional changes to support healing. Meditation. We used it all. I tried to give my body every advantage to heal and recover. 

Coping

I used things like turmeric, garlic, ginger, and even pineapple in my diet to help reduce inflammation and support my immune system. I still puffed up as my lymphatic sytem became more stressed. My skin and hair became dry and brittle, but I was blessed to have no hair loss. 

I kept up with low impact movement; short walks helped me to stay connected without placing stress on my system. I read books on healing and recovery. Some people complain that movies like The Secret and authors like Joe Dispenza minimize illness. I disagree, I found their messages to be hopeful. Not as a minimization of illness, but rather an elevation of self. We are stronger than any challenge we will ever face. 

That is empowering to me. Some days I hurt. Some days we all hurt. But each day, I can make something better, even if it is not me. I participate in consistent self care. I engage in intentional acts of creation on a daily basis. I focus on learning more about myself and work to find ways to reach beyond normal limits, because we are all capable of working beyond normal limits.