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Thoughts from a Brain Cancer (Neoplasm Astrocytoma) Survivor

Updated on July 24, 2016

One of VERY few pictures of my scar from surgery

The first portion of the hub was written from my home 4 days after returning home from my surgery April 2010, with a three year update, followed by a five year update. I can tell you that going back and reviewing these views is very difficult for me. It has taken the incredible love and support of my family and extensive counseling over the past five years to bring me to a point of first understanding and then accepting the medical complications associated with surgery to stabilize a Glioblastoma. The biggest problem I have encountered is the lack of information in layman's terms for people like me. Since my surgery I have done extensive research to help myself and have finally reached a point in my life where I feel like I maybe able to help others.

Original Thoughts Post Surgery

Three weeks ago was admitted to the hospital due to what my husband thought was "mini strokes," where we had a battery of tests run. During this time we found that I had a 3cm mass in my right temporal lobe. While I am not a Dr. I wanted to let others know our experience so if you are researching brain masses as I did after finding out about mine you can see that it is not the end of the world. Yes, it is scarry, and yes, it is serious, but it is not the end of the world. Medicine has come a LONG way in the past few years!

For anyone doing research the technical name for what I had done was a "Stealth reduction of mass in cranium." Which is a nice way to say they took a golf ball size mass out of my brain. The process for me took about 4 hours, and so far the worst part has been that they had to bisect the jaw muscle in order to get to the mass which has been very painful (but pain meds are great!).

In all seriousness, I have no loss of memory, motion, thought or cognition. I am actually doing much better than I was prior to the surgery. (Please note that this line is updated below and time frames have been adjusted to be more accurate. Originally I thought and incorrectly wrote that this was written four days after surgery and less than a week from my entry to the hospital. Real time was a dianosis on April 17th, surgery on April 27th, and 16 days in ICU.)

I have a young daughter so my husband and I decided to have a "hair cutting party" the day before surgery so our daughter could see me without the hair prior to the surgery. She has obviously seen the scar now which is actually quite large and looks like a question mark on the side of my head, but we decided to not hide it from her at all. I wear a bandana when we go out just because it is a little disconcerning to others and we try to be considerate of them. Around the house, it is just part of who Mom is now.

We have taught her that she has to be gentle with Mom for a little while and if she wants to wake me up or get my attention she has to touch me on the legs for a while. This will prevent her from unintentionally hurting me. Children are often more resiliant than we are as adults. To her it is just a "boo boo."

Another thing that has been very helpful is using the social services groups at the hospital. That was very hard for me to accept at first, but they have been wonderful as well. Treating me with dignitiy and respect throughout. I will be happy to answer any questions that I can, and can send images if someone would like to see them, but don't want to offend anyone by just putting them up. It is a pretty large incision, but I have been very blessed, everything looks great for future prognosis!

UPDATE 3 years later

Well, if you are reading this let me say first that my heart and prayers go out to you. The only people who look up the key words above are either dealing with or have dealt with similar situations and for that I can say I know how difficult it is.

It is quite interesting reading my viewpoint from right after my surgery versus how I currently feel. It has taken almost 4 years, and much counseling to actually accept all that was lost due to my tumor. I will make this short and leave it open for questions if anyone does have any I am happy to answer or write a new hub about something specific.

  • I lost at least 4 years of my life, due to memory loss, originally from the tumor itself and then from the complications suffered during surgery to stabilize it.
  • Today I still suffer from issues due to the tumor and the negative space that was left with its removal.
  • I absolutely did and do need counseling in order to handle this in a way that is safe for my family.
  • Those who love us often suffer more than we do during cancer treatments.
  • A primary brain tumor takes over brain cells and destroys them. These cells never repair and never regenerate after removal. The brain does find work arounds but you also have to help it and be willing to accept help when it is offered.
  • A secondary brain tumor grows and takes over space in your cranium causing headaches. When it is removed the space is taken back over by the brain. This is not the case with a Primary tumor.
  • If you have brain surgery apply for social security disability IMMEDIATELY even if you don't think you need it... You may find that you do when you begin to accept reality.

5 Years Later

It took almost 5 years and extensive testing but we finally have some names for the conditions I currently suffer from and will be writing about. Secondary to medical condition is a fancy way of saying that the condition did not occur prior to my surgery and was directly caused by the surgery.

  • Right Temporal Lobe dysfunction secondary to medical condition.
  • Dementia secondary to medical condition.
  • Anterograde Amnesia secondary to medical condition.
  • Confabulation secondary to medical condition.
  • Retrograde Amnesia secondary to medical condition.
  • Depression secondary to medical condition.
  • Anxiety secondary to medical condition.
  • Insomia.
  • Post Traumatic Stress Disorder.

Most of my hubs will be about how we have personally found ways to give me a feeling of usefulness in ways that I never would have dreamed in my "previous" life as a college educated woman with a degree in Sports Medicine with a minor in Exercise Physiology.

I have had extensive counseling over the past three years and continue to see specialists who help my family and I adapt to my conditions. Continuing care is a vital part of managing something like this; however, it can become all encompassing if you let it. I will make sure to cite my definitions of the conditions as I address them but, most of the content will be how my family and myself actually manage life with them. The most important thing I have found over the years is that I can not only survive: I can thrive and contribute to my family even with the multiple and severe disabilities I was left with. There are many many technology tools and devices that can enable people like me with traumatic brain injuries to have highly functional lives; even if it was not the life we originally planned. This kind of acceptance takes time and help.

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    • Hope Kulin profile image
      Author

      Hope Kulin 2 years ago from Tampa, FL

      Hi Wendi,

      Thanks for reading and both are excellent questions. While I cannot say that the journey has been fun, looking back I can find more ways it has helped our family than hurt.

      Our daughter is 9 now and is very aware that there is something "special" about her mother. Her view point is that "God was not ready for Mom to join the party yet, so he left her here to play with me." She is old enough now to help and has learned how to utilize technology to make sure that I am not late for her events and such. She is more responsible than many her age, which is absolutely her way of adapting. We as humans are much more resilient than we think!

      It has been harder for my husband. He remembers who I was before and there are times he misses that woman. Before the surgery he and I were business partners as well as husband and wife, and someone with my conditions is not able to be a business partner. We have learned how to be married without the business. I am incredibly blessed, he loves me and we are still together but I am definitely not the same person I was before - of course neither is he.

      We are growing every day. I sincerely hope that someone can benefit from our experience.

    • lyoness913 profile image

      Summer LeBlanc 2 years ago from H-Town

      This is a very brave article and a brave update. I am glad I read it. I am sorry you have dealt with brain cancer but I am glad you are a survivor. How is your daughter? How about your husband?

      Take care of yourself, thanks for sharing.

      -Wendi

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