So sorry, somehow this post didn't get posted!

Time marches on and soon we realize it has been several months since we’ve posted anything.  Life is good. Kevin remains stable and it’s the holidays! Thanksgiving was spent with family and we had a great meal with great company. Christmas is right around the corner and then we can begin thinking about spring!

Kevin had an MRI in December and we got great news! No progression! Thank you all for your continued prayers and support!

Something comes to mind that I wanted to write about. Does brain cancer cause personality changes?  Is Kevin the same person he used to be? The answer is not as obvious as it may seem. The explanation is more complex than it initially appears.

Any cancer diagnosis could bring about a change in personality for the person diagnosed. Some people consider it a “gift”, a wakeup call to the fact life is short and can change in an instant. Some feel it is a “gift” to discover who ones true friends are and to find kindness in the world.  I am happy for those who feel this way. I truly hope they complete their bucket list and go on to live very happy lives.  I’m not sure if brain cancer is different or if it’s just me, but I don’t see any of this as a gift.

In order to discuss whether or not brain cancer changes ones personality, it is important to define “personality”. One must first understand, the essence of “personality” is a summation of one’s life experiences to date, with possibly a bit of nature over nurture thrown in for good measure.  Brain cancer often brings with it, a number of personality changes, largely due to physical changes in the brain.  Try to put yourself in the shoes of someone with brain cancer. Consider for a moment, part of your brain is missing, what remains has been radiated and poisoned. You are now on any number of medications, and will remain on medication the rest of your life. Some of these medications cloud your mind and create a sense of detachment to the world around you. You constantly live with the fear of recurrence and the knowledge that you have a disease which to date, is considered incurable. You’ve been told by a number of doctors that this disease will almost assuredly recur and will likely take your life. You know that if and when it recurs, you may lose your ability to speak or walk or live life as you’ve known it. You may truly, truly lose your personality. You are in your early 30’s and are unable to work due to the constant fatigue and lapses in short term memory. You are likely physically unable to have children. You live in a reality where literally no one can truly understand your journey. NO ONE. Because no two brain tumors are alike. You, as much as anyone, want to be “normal” again. But like your personality, your “normal” has changed forever. Therefore, having undergone both a physical and psychological trauma, it is hardly surprising to find the cancer fighter is no longer a carefree bundle of joy, as they may have once been.  To overcome the above takes a mental strength most of us don’t possess. It takes the ability to realize that one’s outlook is about perception and one’s perception is one’s reality.

Kevin is the same person he’s always been.  He has always been an old soul. He is smart and kind and funny. Perhaps he needs things repeated more  often. Memory loss is like that. If you have memory loss, you may not remember not remembering. It helps to make a list, but one could easily forget to make the list. Or misplace the list.

To be honest, we all change over time, with or without brain cancer. The personality is in a constant state of flux. Everyone going through major upheaval will change and perhaps those with brain cancer change faster or a little more. Kevin wakes up every day, puts a smile on his face and goes about his day. He may be productive in a way which is different than he used to be. He may not always be as happy or social as he once was. He may not be the Kevin other people think he should be.  My advice to Kevin? People who love you will adapt. People who love you will not judge and will accept there are things about your disease they know nothing about. My advice to others who may want to voice an opinion regarding anyone else’s personality? Just don’t! Check your health privilege and be grateful you have one more day and one more week and one more year to spend with your friend who has brain cancer. Educate yourself. Understand that because someone doesn’t look sick, doesn’t mean they are not sick.  Have a little bit of empathy, because there but for the grace of God……

Thank you for following our posts.  Merry Christmas and Happy New Year!! :)

From a Mothers Mind

May is brain cancer awareness month. I allowed May, 2015 to come and go without posting anything brain cancer related on social media, without wearing gray clothing,  essentially, without overtly raising awareness.  I did, however, place on my wrist, the two brain cancer wristbands which have been hiding in my drawer. I decided it’s time for me to raise my own awareness inside myself.

More than once in the past two years, I have accused family members and friends of being in denial of the disease which has afflicted my son and which has collaterally affected my entire family. I have rationalized that a certain amount of denial is necessary to prepare oneself for the fight which brain cancer requires. I have justified actions of myself and others by believing that acceptance of this disease and its potential progression is far too difficult to take in all at one time.  I have told myself over and over that these feelings will pass and emotionally we will heal.

For the first few months after Kevin was diagnosed, I found myself on auto-pilot. Going where doctors instructed us to go, making certain Kevin got his medication, got to his treatment on time, watching for signs of seizure activity, preparing meals in a timely manner to coincide with his chemo, managing his appointments, taking notes and asking questions of the doctors so Kevin could concentrate on the one and only task he needs to concentrate on-feeling better, staying strong, being as healthy as possible and living life to its fullest.

There is a fine distinction between living in denial and simply not allowing a cancer diagnosis to define you. I have always considered myself a realist. I have learned there is a fine distinction between realistically understanding something on an intellectual level and actually accepting it as something one must truly acknowledge as a certainty. Two years ago, my biggest concerns were the awful Denver traffic, what to make for dinner, making the wrong decision about the highlights in my hair.  Is it possible to age twenty years in the span of only two? Stress is a peculiar phenomenon. It creeps up on us and surprises us with its veracity.  It attacks when we least expect and in ways we didn’t know were possible. Some lessons are learned the hard way.

May, 2015-Brain Cancer Awareness Month. I took this time to reflect on what it means to have a family member with this diagnosis. What it means to everyone involved, because the big C worms its way into the lives of everyone who loves the patient who’s been diagnosed, and everyone who loves those people as well.   I look down at my arm, wearing the grey and black wristbands, and allow the awareness to sink in.  I look at the calendar because I am now aware the first Sunday in June is National Cancer Survivor Day. It’s a day of celebration for survivors and inspiration to numerous others. I think of the many people I have connected with in this small but relevant brain cancer community-people of all ages, people from all over the U.S. and other countries. I forgive myself for allowing the denial to settle in me, all the while consciously believing I had reached an acceptance. I had not and I have not. But I understand that now. On June 7, the first Sunday in June, I chose to celebrate life. I made a promise to myself. I will take my own physical and mental health seriously. I will make it a priority. I will seek the spiritual knowledge which will allow me to live in today. I will continue to hope and pray for a cure.

All kinds of updates

Trip #1, San Francisco 4/3/15
Easter weekend Kim, Kevin and I spent a few days in San Francisco.  They had never been there and I was ready to go back and check more out.  We had such a great time, it was definitely too short of a visit.  We got there late Friday morning, hopped on the double decker tour bus then ended the evening at a great lil sushi place.  Saturday we spent the after on Alcatraz Island...it was AWESOME!  Kevin really was loving seeing all the history, it was really interesting to take the tour.  I highly recommend it if you can get there.  We ended that evening at Fog Harbor for a very expensive and tastey meal, then walked to Ghiradelli for some chocolate!  Sunday we spent the day on the double decker tour bus, checking out the Golden Gate Bridge, Sausalito and all that San Francisco has to offer visually!

We got home and immediately dived into remodeling the town home, talk about busy!  Something I personally have been anticipating for over a year, so happy to get it going!

Trip #2 4/24-26
What an amazing weekend we had in Houston at the Together In Hope conference, put on by MD Anderson Cancer Center.  I personally was not sure what to expect or how any of us would feel by the end of the weekend.

Rather than go into detail about all the different things we learned, I will get to the important, significant part...we each formed relationships with other brain cancer patients, care givers, spouses, parents, etc, and that is priceless.  Up to this point Kevin didn't have anyone he could call that fully understands physically and emotionally what he is going through.  Kim didn't have anyone to call who really understands her thoughts, feelings, fears, etc and I didn't have anyone who really understands my perspective, thoughts, feelings and emotions.  Now I can say we each have people in our support circle who we can count on to help make our lives easier. 

4/29/2015

Kevin got an MRI on April 26 and the results were great! No new growth! No sign of new disease!

Most of us can only imagine the amount of anxiety surrounding an MRI that will tell you one of two things, you are either stable or you have new disease growth. It’s a little difficult to wrap your head around the fact that the best he will hear is there is no new growth. Wouldn’t it be great if instead, he heard “every bit of cancer and tumor is gone!” Kevin tries his best to not allow the stress to get the best of him before the MRI date and luckily he is able to get his results immediately. The doctor plans to reduce the frequency of the MRI’s to once every 3 months, as long as they remain stable through the end of September.  So there is a new goal to look forward to! In the meantime, Kevin is busy enjoying each and every day! He feels good and is gearing up for summer bike riding season. 

Spring has sprung!

We are just having fun day to day.  While I keep busy selling houses and working on my health coaching, Kevin keeps busy in his own way. He made a quick trip to Dallas to visit friends and pick up some things from his employer and he spends a lot of time with his brother doing the things they love to do. 

We had a fun evening at my annual awards party last weekend,  where we got to dress up and spend time with co-workers.

We are excited about a couple of weekend trips we have planned in April.  Kevin, his mother Kim, and I will spend a quick 48 hours in San Francisco. I have been patiently awaiting my 2nd trip there, but neither of them have been to San Francisco. We are going to have so much fun and it will be great to get away for a while.

Later in April, we take another long weekend in Houston, to attend a brain cancer conference at MD Anderson.  We are anxious to meet others and hear about the latest medical developments and research. Kevin can also meet with doctors to get a second opinion about future treatment.

We  want to thank everyone who has donated to our fund. In addition to helping meet co-payments, insurance premiums and deductibles, it is helping us get to the conference. We are so grateful!

Stay tuned for trip updates and adventures!

God Bless!

Cheri

MRI UPDATE!

Hi friends,

 

Great news !! Kevin had his routine MRI on Thursday, February 26. Happily, the result was that everything looks stable, with possibly some shrinkage of remaining tumor. The neuro-oncologist was very pleased and Kevin is relieved to put one more scan behind him.

I think it would be easy to fall into a cycle of depression after such a life altering experience as Kevin has been through in the past two years. As the two year cancerversary approaches, I reflect on the many changes he has endured, from the initial shock of diagnosis and brain surgery, radiation, chemotherapy, to quitting work and  moving back to his home state. He has missed old friends and made new friends and become accustomed to a new “normal”. Any one of these things alone, might have knocked him to his knees. While it would embarrass him to know this, I think Kevin has demonstrated a strength most of us would be unable or unwilling to continue doing, faced with these circumstances. He stays busy. He helps others. He shovels snow and fixes broken things and works on vehicles. He makes it easier for all of us to accept the bumps in the road which happen in each of our lives.

We have a couple of weekend trips planned and will be going to Houston in April to attend a conference for brain tumor patients and their families.  It looks like it will be very informative, as well as giving Kevin a chance to connect with other brain cancer patients. There are some long term survivors and we all want Kevin to join their club!!

As always, we appreciate your interest in Kevin’s story and your continued donations. Kevin will be getting COBRA insurance beginning soon and it will be considerably more expensive than what he has been paying. It will, however allow him to continue with the care he has been receiving and allow him to travel out of state for medical care if necessary. Both of which are critical at this point.

Until next time….

Kim (mom) 

“You beat cancer by how you live, Why you live

  And the manner in which you live."  -Stuart Scott

http://www.gofundme.com/holistic4kevin 

Checking in

Sorry I haven’t written in a while, but in this case no news is good news. We are moving steadily through each day. Kevin is feeling well but the weather (wind and occasional snow) has prevented us from getting out and doing some of our favorite activities. We spend time with friends, his brother and girlfriend and family as much as we can.  

Please know we will be keeping this blog updated as much as we can. 

Continued thoughts and prayers are appreciated. 

MRI update!!

Kevin had his routine MRI on Friday and we are thrilled to share that everything looks stable. There is no new progression of disease and the doctor even indicated there was some shrinkage of the original residual tumor. This was in comparison to the October, 2013 MRI. This is amazing news and we are so happy that the MRI confirmed what we already know-Kevin is a warrior! We are so grateful for his youth, his strength and his health, prior to the diagnosis, all of which play a part in Kevin’s ability to fight. Of course we are grateful for modern medicine and his great neuro-oncologist, who was willing to speak honestly and openly and throw everything but the kitchen sink at Kevin to help make this happen. It was a long and difficult year of chemo but this MRI makes it worthwhile.

Kevin’s blood counts continue to improve and he doesn’t see the neuro-oncologist again until February, when his next MRI is due.

We are soooo thankful for all your continued thoughts and prayers! We continue to move forward with some of the alternative treatment options. The naturopath recommended a few supplements and Kevin has on them. He continues to exercise and does his best to eat healthy meals.

All in all, the past few days have been great.

HAPPY NEW YEAR!

Love,  us