Eating

One of the biggest changes for me is pretty small and simple, but it affects me daily. One of the areas damaged is my ability to sense and feel hunger. I simply no longer have it. I also have lost much of my sense of taste. In the beginning I had noticed changes, when everything tasted like child's paste. At this point, I'm not really expecting it to come back.

I have trouble tasting salt. There have been some really bad mix-ups when I cook unless I have help. I also love sushi, so much. (This is funny because I hated it before.) I think I have pretty much narrowed it down to the spicy mayo, siracha sauce, and hot mustard. These, for some reason, taste to me. To be able to taste any food is amazing. I've started adding spicy mustard to sandwiches just so that I can taste.

I'm working with my doctors on keeping to a meal schedule and eating healthy portion sizes.  I tend to not eat enough and have lost a lot of weight over the last year. Some weight loss is ok, too much is not good because my body is still replacing lost and damaged tissue. We are tracking it and it is not at unhealthy levels. I have the most amazing team that help me to make sure that I do not suffer needlessly.

I loved food. Flavors, textures, the layers of savory and sweet. Oh well, every day there is something different, but every day I am here. I stumbled across a random fact the other day, a baby does not at first know how to taste salt. It takes four years for them to be able to detect it in their food. I'm giving myself four more years but not stressing over it too much. My husband loves sushi so for now, we just make sure that I get some on a semi regular basis.

God bless you!

Grey Matters: How can you help?

Many organizations and groups purport supporting research and healing for victims of tumors and cancer. Many of these are worthy and worthwhile organizations. Others have high overhead and operate to compete for donation dollars. Working with smaller and more local organizations is often a way that you can ensure that funds reach the actual programs that you want to support. For example; Meningioma Mommas, one brain tumor group, actively works to fund specific studies and research. Funding dollars go to the studies and programs they are earmarked for. You can use consumer watch groups to sort out what non-profits actually spend funding on the victims and research.

To help in you I am making some resources available here. It has become apparent with the success of programs like Indie GoGo and Go Fund Me that grassroots fundraising can do more than it was first thought. Through small donations and support great change can occur. I fully encourage you to do what you can. With Mothers and Fathers Day around the corner, consider making a donation, in their name, to a cause that they believe in and support. It could be the gift that keeps on giving, for more than just your loved ones.

Resources for finding quality charities:

Self: Best and Worst Cancer Charities

Charity Navigator

Cancer Charity Scam on CNN

This is hard enough. Knowing that you face death or at the least a very changed life is hard. Knowing that there are those who make a business out of diverting aid to victims for personal gain, is just plain vile. There is a special place in hell for those who think to profit from someone else's pain. Do your research but don't let fear hold you back from doing what you can. Through small donations Meningioma Mommas was recently able to fund a study into atypical meningiomas. A study run by a doctor who carries a personal and vested interest in finding a cure. I love that when we work together that great change is possible.

God bless you.

May 5; Revenge of the Fifth

Continuing with the play on words, each May 5th is Star Wars Day revisited. Its easy to see why, with May 4th being Star Wars Day, well fans of the Empire want to play along too. Its silly and in good fun.

One thing not in good fun, is the long term prognosis for brain tumor patients. Meningioma, the most common form of brain tumor has increased its likelihood of occurrence. It used to be thought that only a small percentage of these tumors would reappear, that once beaten, you were cured. New research shows that this is not the case. It is now believed that fully 50% of all meningiomas will regrow at 10-20 years post removal. With patients being diagnosed at younger ages, this leaves us facing life threatening conditions or surgery multiple times in our lives.

The journey is never really over. Like the Sith, it can rise and reoccur at any time. Multiple tests and scans will be done over my lifetime. Because of the need for follow-up MRI I am required to limit my exposure to other forms of medical assessment; dental and chiropractic x-rays must be on an "as needed" basis.

The other specter for the rest of my life are seizures. Any time, any level of intensity. While I am not considered a "likely victim" of seizure, they can still just show up one day. I have to be prepared on how to deal with it. I had to teach my toddler to call his daddy in case mommy gets hurt and can't wake up. As one friend said- "Lots of free sides."

The journey is not over, I'm not throwing in the towel by any means. The long game is what concerns me now. One day at a time, I can do this. So can you. Together we can work to increase brain tumor awareness and work to a cure.

God bless you!

May the Fourth; Lessons on Recovery from the Star Wars Universe

So, Star Wars Day. A play on the date of May 4, well, it makes for a lot of fun. I can't help thinking about some of the lessons of the "Force" and recovery. Think about it:

1. Fear leads to anger, anger leads to hate, hate leads to suffering. When diagnosed with any brain tumor, well, our emotions are varied and valid. Those that allow themselves space to grieve and then choose to move forward have a much stronger outlook. No matter your tumor type or impact, your quality of life has a lot to do with your level of hope and belief that there is value in the experience. We grieve. We are angry. We also have the ability to hope and work for the future. Researchers are beginning to look at the impact of happiness and hope on recovery, all my providers affirm that there is an impact but it has not been well documented yet, I look forward to those studies being completed.
2. Do or do not, there is no try. Some may find this discouraging. I don't. This is permission to rest, to take time each day to recover. Some times I am unable to accomplish things. I just can't do it. This is ok. I can say no and not feel guilty or worry that I'm not doing enough.
3. Finish your training. Pushing for results may cause circumstances you don't want; slow down and take your time. Luke didn't listen to Yoda when told to slow down and learn. He rushed out ready to save his friends, right into a trap and a confrontation that he was not ready or prepared for. It is so easy to want to push for more than we are capable of. Trusting care providers and supports in our recovery is vital. Learning to slow down, to learn, and to give myself time to really heal is vital. Some rush right out to regain their lives and are shocked when the body and brain rebel. It doesn't always happen right away, but as one person said "You can take the time now, or your body will insist on the time later. You choose."
4. Always say I love you. Han Solo did not respond to a declaration of love with anything but "I know." I do not want to ever assume that my loved ones "know" they are loved. I want to tell them, frequently, so that they never doubt it. I want my actions to match my feelings. I try to show love, communicate love, and commit to always closing each interaction with a reminder that love connects us all.
5. The Force surrounds us and connects us. We, in this community and life, are all connected to one another. None of us is alone. The loss of one life, affects all of us. We offer strength, encouragement, and support to one another. When one is weak, another is strong. By sharing our strength and remembering our connections we can each find the resources necessary to live our life to the fullest capacity.

Some Day

Brain tumors become a game of "some day". For many Some day will be surgery. Some day they will have a seizure. Some day they will lose memory or life function.

Numbness. Pain. Disorientation. Fatigue. Double vision. Hearing loss. All these can occur any time in any way for brain tumor patients, benign or cancerous. Surgery is often reserved for those cases where, to not go forward, guarantees death. Radiation and chemotherapy may offer hope and relief for some, but not all cases will benefit.

You could say I was one of the fortunate ones. Instead of years of some day, everything happened so fast that some day was today.

Now my some day consists of creating a life post craniectomy. Some day I will not shake. Some day I will be asked a question and know the answer without thinking about it. Some day I will drive again. Some day I will laugh and run with my children. Some day I will not be in pain.

As you can see, it becomes easy to get lost in some day. I try to focus on today, on now.

It's not always easy.

There are times where holding on to today, this moment, is all I can do. But I hope. I hope for healing, for growth. I hope that none of my loved ones will have to walk this journey.

I respect those that support their family, that hold loved ones when they wake up lost and confused.

Most of all, I respect these warriors. They wake up every morning, never knowing what will happen, knowing that anything is possible, and they choose to live. Every moment they choose life. Past the pain, seizures, anxiety and unknowns they choose to live a life you will know nothing about. (Thank God you don't, this journey is not for the faint of heart.)

They live around you, these warriors. Mothers, grandmothers, fathers and friends. They live quietly. Not making waves. Getting up and living their life, the best way they can. They work and play, laugh and love. Through all this they know how fleeting it all can be. But they still do it, every day, because it is not yet some day and they are here today.

God bless and keep you.

Why May?

Why May for Brain Tumor Awareness? May is flowers and Mothers Day. It is about spring and beauty.

Here are a few things you may not know:

3:1 - yes, this is another example of how being of the feminine gender creates increased chances of certain types of brain tumor. Some are looking at parallels of occurrences of breast cancer and ovarian cancer in addition to meningioma. Many of us hope that there is no connection. Most of all, we pray for a cure. We pray that no family loses another person to brain tumor, of any kind.

Go Grey in May

May is Brain Tumor Awareness month.  Go Grey in May. The world is getting closer to a cure and every day warriors battle on. Some live with their tumors having regular scans and praying for no change. Others have violent and invasive surgeries praying that the deficits from surgery will be less than those caused by the tumor. Many live with multiple tumors. Updated research shows that 50% of meningioma tumors will regrow by 10-20 years post surgery. Constant evaluations. Regular reviews. Specialist visits. All this is part of the life of a brain tumor patient. Every day in May I will explore another aspect of this journey.