25 Words

Recently I rediscovered a note I had written, back in 2013. This note was 25 words. These 25 words were to be a representation of what you would tell your loved ones if that was all you had time for.

Here are the 25 words I had chosen at that time.


God lives.
He loves you.
I love you.
Love others.

Be true.
Be patient.
Be kind.
Be genuine.

Have charity.

Look to God.

Love always.

May the Lord bless you in your days. Thank you for reading.

Accepting Changes

This week seems to be about accepting the changes and limitations I am now faced with. I have had a variety of experiences that have contributed to this realization.

1. I become quickly overwhelmed and need to reset on a regular basis. This means closing my eyes and deep breathing for three minutes.
2.  Sound and light are still triggering. You can guess with three active little boys how often that happens. (My mother in law is staying with us and has been helping since the day I went in for surgery, could not do this without her.)
3. No hearing on my left side. This makes it hard to hear as I have to turn my body and ask others to repeat themselves frequently.
4. Thoughts can become scattered and I lose my train of though quite often.
5. My balance is shaky and I still need to use my walker when going out for any period of time, it helps keep me grounded.
6. I sleep about 14-16 hours per day.
7. My visual tracking is off and I can become easily confused.
8. Stress and anxiety must stay low; anything that escalates my blood pressure endangers my recovery.
9. I am significantly slower at any task.
10. I cannot make any rapid movements; moving to quickly results in confused vision and loss of balance.

 My body and mind have experienced a significant event or trauma. It is ok to allow time to heal. Be patient with yourself and your abilities. This is a new chapter.

Hair

There is an awesome 70s song about hair. Learning to live without much has been an interesting challenge.

A shaved head on a woman makes a statement, regardless of the reason. You must embrace it and work it. Most importantly you must accept it. Short hair makes no allowances for bad days. No feathering to cover up swelling from steroids. No curls or cute styles to hide sleepless nights and palsy.

Coping with these changes is sometimes difficult and like anyone I have bad days. My son did something the other day that challenged my concerns with my hair.

I was called into the family room to see what my sweet toddler had done. I arrived to find him proudly sitting up on the couch holding a drawing pad. My husband then asked him to tell me about his drawing.

He looked up at me and showed me what he had drawn. Two circles on the page, stick arms and legs with one circle tall and one short. Guessing the answer I asked what the picture showed.

I was surprised and deeply touched at his answer.

"That's you" pointing at the tall circle. Ready to praise him I was stumped when he continued. "You have short hair. You are sad about your short hair. This is me and I have short hair. We are the same. So it's ok to have short hair. It's just you and me."

I choked out, " yup, it's you and me."

Kids get it. It doesn't matter what we look like, the labels and insecurities we concern ourselves with. How easy would it be when confronted with those labels (fat, skinny, young, old) to think again;

"We are the same. So it's ok."

When my son can find this beautiful,
I wonder what it is we are so worried about,
letting other people see us as we are. We are the same.
A little dented, a little marred, but perfect in our imperfections.

Warning -Explicit language.

What the Hell!

I am so angry right now I could spit. After a few issues already with the office of my doctor here we go again. My follow-up, the 30 day review of everything I have gone through is later this week. After hearing many times and the final day in the hospital "I want to see you in my office in 30 days." (not too many ways to misinterpret that.) My follow-up is set with a nurse.

Nothing against nurses, they do amazing work. But apparently unless I need surgery again, I will never see my surgeon again. I have received better support and attention from my primary care doctor after this then the person who did the surgery. I get that he has a busy schedule but say it like it is. Don't yank me around.

If I hear one more falsely cheerful voice say "That is our policy" I'm going to throw things.

So Thursday I will have my last appointment and then I plan to never be in that office again. (If this means I never have another tumor, even better.)

Rant over and done.

Update: The nurse was OK, not great, and really hadn't reviewed my case well. The doctor had planned to try to step in but was called out of state for another surgery. He called me later that night and we reviewed things better in 10 minutes, than 30 minutes with an associate. He is amazing.

The Thing About Lemons

So, I may not have explained at this time the whole reference to lemons and lemon-aid (yes, it was deliberate, thank you. No this was not a spelling error, it was a choice.)

When we were first told about my tumor, my little parasite, it was rather large. Post surgery, my morbid mind asked the doctor "How big was it?" You know, because that's something most brain tumor patients want to know. A lemon, he compared this thing to a lemon. "Holy batman! How in the ever-loving world did something this size sit in my head for, and I quote, decades?!?"

 

 

If you question my reaction, I calmly invite you to go to a nearby produce store. Pick up a lemon. Hold it in front of your face and take a selfie. Then look at the picture. Just to hazard a guess, much of your face will be covered by the aforementioned piece of citrus. Then imagine living with this for days, weeks, months, years, even decades. 

Questions from the doctor and his staff now begin to take on more ominous tones. "How are you still walking around?" "You really have only passed out the one time?" "What were you doing for a job?" "How do you keep functioning?" At the time I believed many of the questions to be facetious, lighthearted, joking around to keep things easy. Now, no not so much.

I recently saw the colored photos of my surgery that show the tumor sitting nicely abutted with my brain. I saw my nerves and the blood vessels giving it life  even as it tried to, unintentionally, take mine.

According to all statistics if you get a brain tumor, get a meningioma. Just don't get one like mine. It was big and quiet, and sitting just at the top of my brainstem. Many times through those harrowing 2 days we had miracles intervene. Those interventions, and I would say miracles of God, added up to equal saving my life and my identity. All this past the time when medical science would say it was possible.

People ask me how I am when they see me.  What else can I say but "Alive and kicking."

God bless and keep you.

Inconstant Memory

We exist as a collection of moments and life experiences. We become how and what we live. What then do we become when we can't remember? I'm talking not about, "Oh, I forgot" moments but when the memories themselves are actually damaged, say by someone working directly on our brains.

I went to sing to my youngest and after the first line, did not recall anything else. I have sung this song to him every night for months. I sat on his bed trying to recall and arrived at a complete blank every time. Not wanting to upset my son, we began a different song and explained that mommy would sing him the other song tomorrow. (After she could look it up.)

He was tucked in and ready for bed. Then mommy went to her room and sat quietly trying to accept and grieve for the loss of a silly ridiculous song that mattered to no one but my son and I. My heart ached with the loss and it was such a simple thing but to me it felt huge. My son handled it well, for which I am grateful.

All I can hold to is a scripture I memorized years ago (thank you Brother Larson, please forgive me if I make a mistake).

 "For God has not given us a spirit of fear; but of power, and love, and of a sound mind." 2 Tim

I can trust that I am in here somewhere. I will get it all back. I just need to relax and trust and God will carry me through this. The big challenges, and the small. Even if I cannot remember the words to a song sung only for a young boy, my God can. May He bless your day.

Happy Father's Day

Today is a milestone. I wish to use my time to spend with the father of my children. (I had my dad here last week, so he got spoiled then.)

If you do not have the opportunity to have a father here to spend time with, please look around you at the many examples of loving guidance and support that you have experienced. May God's blessings rest upon you today.

 

 

 

Past My Own Front Door

How often do we, in our daily events, look past our direct sphere of influence? Do we seek out the one and let the ninety nine rest in safety? Do we look for opportunities to serve? Or do we pull back, stay closed, and refuse to look past our own front door?

Today was a hard day. I hurt, a lot. My muscles and joints were sore. But more intense was the sorrow felt in my heart as I recalled all that was lost from this tumor. Time with loved ones, hearing in my left ear, muscle control, the ability to eat easily. Small things that we take for granted every day. I lay in bed with tears seeping from my closed eyes as I tried to block out the pain. I began to pray and a song from years ago came to mind.

"Have I done any good in the world today? Have I helped anyone in need? Have I cheered up the sad, or made someone feel glad? If not, I have failed indeed."
"There are chances for work all around just now. Opportunities right in our way. Do not let them pass by, saying sometime I'll try. But go and do something today."

Wake up. Go and serve. In the service there is healing, as you go look past your own front door.

Limiting Temptation

 

I had an interesting thought today. I was pondering all the things that God has asked of us; serve our neighbor, study the scriptures, be involved in the community, just to name a few. What is the purpose in so many charges? I feel completely overwhelmed, weak, and fallible when faced with the responsibilities of following Gods plan on earth.

In considering this, I wondered why would God give us so much to be responsible for? It is literally impossible to fit everything into a daily schedule. The thought came to my mind that there is a time and a season. If we are to trust God then we are intended to take on these challenges as our time and circumstances indicate.

I then took it a step further. This does not mean that we clutter our schedule intentionally to avoid Gods calling. What it means is that we use prayer and sound judgment to review our needs and the needs of our family and serve as we are able.

In addition to serving as we are able, the blessing of limiting opportunities for sin exists. In His very plan we are given a natural protection from the temptations of the devil and the natural man.

We cannot both sin and serve God at the same time. Man cannot serve two masters. This is the great divider of all things. We as individuals, during this time on earth, face decisions every day. We choose to be kind or not, be honest or not, be patient or not.  What I mean is that if we are involved in the act of helping a neighbor we are not also engaged in acting on temptations such as strong drink, sloth, or greed and selfishness.



As I considered all this I realized God has provided a way for us to grow closer to him even as we strive to master ourselves. As we engage in acts of service we limit the level of influence that sin and temptation may hold over us. The act of increasing involvement in positive activities enlarges our minds and souls.

Home Truths

This is a collection of thoughts and core beliefs I have identified over the past two weeks.


1. People, not circumstances, are irreplaceable.

2. There is always time for openness and forgiveness, no matter how short the time appears.

3. You can catch glimpses of God between the shining moments of your life.

4. Everything can change overnight, at some point it probably will.

5. Most people do try their best, often they are not even aware how much that means to the person they may be helping at the time.

6. Gratitude is never time wasted.

7. Unconditional Love is the greatest gift we can offer to another person.


"Greater love hath no man than this, that a man lay down his life for his friends." John 15:13

Me and my super cute sisters, they will totally kill me for this, but been there, almost done that.
The surgeon estimates that the tumor had been in my brain for decades.

Gross Stuff No One Tells You

After a craniotomy or craniectomy there is a lot to take in. A lot of changes. A lot to think about, and then there is the stuff that no one talks about.

1. You will not be able to shower. Yup, no water immersion of any kind until cleared by your doctor. Sponge baths? Yeah, get used to it. Someone will help you wash, no modesty here. The nurse will be super professional and not look more than necessary. You'll be on a lot of pain killers, so this is only a mild inconvenience.

2. Food has no flavor. Literally everything tastes like cardboard soaked in Elmer's glue. You will likely be on a liquid only diet and have a ton of medications so you won't really care. There is a point when you move to solids that it still tastes like cardboard. This will diminish over time. Stay calm and enjoy relearning what you like now.

3. You will possibly have iodine film in your hair; it looks like chunks of dried blood when you brush or comb your hair. It's red and sticky and looks really gross around your incision. This film serves a great purpose in surgery keeping pesky hairs out of your open skull, but you may still be removing from your head up to a week after surgery.

4. Your incision will itch, a lot. We are talking burning fires in the seventh circle of hell. You will wake up at random times certain that some evil imp is using your head as a drawing board with a quill pen. And heaven protect anyone who dares to touch any part of your head without express and written consent. It is strictly off limits.

5. Random body functions will become impossibly hard. I remember it taking me four weeks to learn to swallow again. This included food, drink, and pills. It becomes difficult when you hold your pain killer in your hand and prepare to attempt to get it down for the third time. Any of your functions may be affected due to swelling in the brain following the trauma of surgery. Ask your health care workers. They have experience in this area and can help you through the minefield of new experiences.

6. Bowels, #2, the backend. Whatever you call it you will not be able to poop for the foreseeable future. When you can finally manage it with the aid of stool softners it will be an epic event that you are likely to share with anyone in your closest vicinity.

7. Riding in a car is an ordeal. Let's be very clear, you will not be able to drive for an extended period of time. What you may not consider is that even riding will overload your system with stimuli. It can be intense. Simple changes such as polarized sunglasses and closing your eyes will reduce the overload and help you regulate.

Overall, your brain has been reset. You can and will experience myriad changes. No two experiences are the same. Your experience will be as individual as you are. Let it be. Talk to your healthcare team and don't be afraid to ask questions. You will only know what you need if you ask. Anything is possible; you have undergone a life changing experience, accept now that you will never be the same, that is ok. The possibilities are endless. God bless you.

A Whole New World

We are not talking Disney magic and flying carpets....


I am just waiting now. I have brain surgery in a few hours. Wow, just lay it out there all casual like. I have a brain tumor.

The cause for my brain inflammation was discovered this morning. I have a large meningioma sitting with my midbrain pushing it aside and pressing on vessels and tissue. They found it this morning through a contrast MRI. We were sent immediately from one ER to the [Medical Center]. We met the neurosurgeon and I was admitted.

The neurosurgeon met us and explained that I was being admitted. They would use steroids to try to shrink the tumor aiding in removal, I would have surgery either later today or tomorrow. He then asked a simple question. "How are you functioning so well?"

How was I functioning so well? The tumor took up a large part of my cranial space. He went on to explain that usually patients at this point had multiple blackout episodes and were unconscious when the tumor was finally identified.

Did I have headaches? Yes. Was I coughing? Yes. Did I understand the seriousness of what was going on? Oh, yes.

The final plan was to admit me and use steroids to shrink the tumor. I would have a craniotomy first thing in the morning.

Ok, this is really happening. Anyone else completely freaked because wow.

Update: Here are some awesome post surgery pics of my head, the doctor will remove the sterile bandage later but it looks kind of crazy. There is a red goo in my hair. Its an iodine spray they use to prevent stuff getting into the opening of the skull, so gross.