Welcome

Wife, Mom of Three and Writer

About Joanna

Joanna Murray grew up in Quincy Massachusetts as the second of six
children.  She has attended DeAnza Community College and wishes to continue her
education at San Jose State.  She currently resides in California with her
husband and three children.  As a stay home for 13 years, her daily activities
mainly include taking care of her beloved family. She has worked with children
in the past and volunteers for many programs at her children’s school.  In the
fall of this year, her mother passed away from COPD.  In her grief, Joanna
discovered a new-found passion for writing and is now a regular contributing
writer for the COPD foundation.  Joanna is also a 24-year cancer survivor, and
wishes to share her many life experiences of being a child with cancer, being a
mother and being a caregiver in the hope of offering solace and inspiration to
those facing challenges. Joanna has come to the point in life she wishes to give
back what she has abundantly received and hopes to help others through her
words.

Stepping back and Looking forward…

It is interesting how things truly do come back to you when you least expect it. Just recently, I had a hospital stay that involved emergency brain surgery. It sounds awful and completely scary and all in all, it was, but for me it was easier when you compare it to what I had gone through all those years ago. I do believe that due in some part to my age I did bounce back easier. When you are sixteen, you don’t think about how you are going to get better you just do it. Today, it is somewhat of an obstacle course I need to get through. On the outside, looking in I look great, but all in all, I do not feel centered, it will take time for me to feel like my old self. At the moment, some little tasks that once were simple seem to be overwhelming and out of reach for me, but I know that the more I work at them the easier they will come.

As I sit here today so many things come to mind, first off I recall those first few weeks home when I was a teenager, which were very interesting. I had double vision for some time after the surgery and I remember walking funny, holding on to the sides of the wall for support. Life at that time seemed out of focus for me. I was trying really hard to get my bearings straight and the more I tried the more I failed, eventually I did start to finally pull myself together and get myself right on track.

My life at home was quite interesting growing up; you see at that time I had this dysfunctional family and my illness did cause quite a tidal wave to some degree. Life did have its challenges; I pretty much had to fend for myself for the most part. My step dad whom I love dearly was an alcoholic but today he is sober, is in AA and has been for 20 years. Now, I trust him with my life, probably the best thing he ever did for himself was get sober. My mom whom passed away last year had her own issues at the time but she did the best she could for me. Twenty-five years ago, they did not send out a nurse or physical therapist or occupational therapist to help me get better. I had to do it on my own; my parents did not know what to do so I had to figure it out myself. Over the years people have asked me how I got through it and all I can say today is exactly what I said then, I wanted more for myself and that meant pushing myself every day to feel stronger and more motivated.

Something I do remember that helped facilitate my recovery was walking the dog. I already could not walk to straight, so walking Miss Piggy was somewhat of a challenge but I did manage. I ended up letting her do all the leading, so basically we went were she wanted to go. I do credit her a lot for helping get myself out and moving. She helped straighten me out for the most part. Miss Piggy died many years ago and the time I was gone and moved away from home and I was quite sad to hear the news, but recently I have come to realize how much she truly meant to me. She was a great dog and she was strong for the both of us. I remember thinking that I was on my own to some degree and if I wanted to get better, I would have to help myself. It was a lonely time but as I got older, I realized how strong and capable I had actually become.

Twenty-five years later, I feel back to where I started, unsure about the future and how I am going to get back to my life. This time I have a team, which includes a physical therapist, an occupational therapist, a neurologist, neurosurgeon and a medication specialist all helping to get me back on my feet. I also have three great kids, a wonderful husband, friends and family here for support. Although I have more support, this time feels different for me but oddly still somewhat lonely. Last time I didn’t have children to worry about, have any real responsibilities and I guess I wasn’t really concerned about the future, I had a “take it day by day approach”. My biggest fear right now is that I don’t want to leave my husband and kids; I want a full enjoyable life with them. I have people in my life who are expecting me to bounce back quicker because after all, “I did it before I should be able to do it again” but although this time in some aspects it was easier it still has its set of challenges. I have good days and bad days and it changes, moment to moment and I feel more fear about my future. I need to be patient and kind to myself and realize that this didn’t happen overnight – it won’t get better overnight.

I have been told that it could take a while to recover, some days I have my balance and a bit of energy and others, I am in pain and in a fog. I know that eventually I will get through this and be stronger for it but at the moment I have to be patient, surround myself with positive supportive people and learn all over again how to take it “day by day”.

And, when you can’t go back, you have to worry only about the best way of moving forward. ♥ Paulo Coelho ♥•*´¨♥¸.• ♥ ´*.*♥¸.•dotsie
By: ‎”gr8quotes”

Going Home…

All these years later, I remember almost every little detail, of what I had gone through all those years ago, when it comes to my brain tumor. Today in fact, when my children ask me, what it had been like for me? I end up focusing on all the positive things that had happened, it is about all the little things that I can find humor in now. At times, I still dwell on what could have transpired, it is my children that help me keep things into perspective.

My days in the hospital were finally coming to a close, I had been a permanent resident over a month. I was really getting sick of hospital food. I finally was going to go home, to sleep in my bed and have that peanut butter and jelly sandwich, I so longed for. So, much had happened to me, part of my hair was gone, I had to were a patch on my left eye, I had double vision for sometime after the surgery, and finally my face broke out all over, because of the reaction I had to the medicine. At this point, all I really wanted now was for my life to be back to normal.

When my parents arrived, my Mom tried to take my slippers off so I could put my shoes on, I did not want my slippers off, so I kicked her and told her “no, leave me alone”. She then proceeded to tell me I had to wear shoes, it was raining outside. I told her outright, I wanted to wear my slippers and my shoes. Dear me how was I going to get my shoes on over my slippers, my feet were swollen up like a balloon. Here I was sixteen acting like I was two, I can only imagine how my mom felt.

Please do keep in mind, I was on morphine, so the fact remains, I had no concept of reality right then. I basically ended up throwing a tantrum. What amuses me now, as I sit her telling my kids this story is how funny this must have been, as my kids laugh I can not help but laugh along with them. I realize now that I had many moments like this while taking care of my Mom, she too had tantrums, she was in-fact on a lot of morphine as well. Maybe, this is why I was meant to take care her, she took care of me when I needed her most, now I am here for her in her dying need. There had been times, when it was hard for me to really grasp how she felt, but generally I did understand.

On that faithful day I arrived home, the first thing, I did was go into the kitchen and attempt to make myself that peanut butter and jelly sandwich I so desired. “Boy oh boy, what a mess I made”, first, I could not get the peanut butter all on in one spot, second, the jelly ended up ever else besides on the bread and last but not least, I then decide to make myself a cup of orange juice, needless to say the juice ended up all over the floor, but it was not alone I sat along with it. As, I sat on the floor crying all my Mom could do besides, not to laugh, was help me up, hug me and tell me someday soon I will be able to make a peanut butter and jelly sandwich. She was right twenty-five years later, I am happy to say that I have become somewhat of an expert at it.

Day of the Surgery…

The day of the surgery was dramatic and overwhelming. I kicked the anesthesiologist, what do you expect, I was a sixteen year old and he wanted to poke me with a needle. As my mom and step dad tried to calm me down, and the nurse tried to get an IV in me and failed miserably. It is safe to say, I was in a bad mood. I had no desire to let anyone cut into me or shave my head for that matter.

At the point, they were wheeling me down the corridor and everything was set I started to see funny lights then I was out just like that. When I came to, this man with a big beard was leaning over me and asking me how I felt, “how do you think I feel?” I said, I was in the recovery room at this point. I remember wanting my mom; I was scared and felt cold. I was groggy and kept asking to go home, I just wanted my own bed. I felt safe at home, at times life was hard and my siblings drove me crazy but it was the one constant thing that I had.

My mom was in the waiting room the surgery had taken close to twelve hours, my former girl scout leader stayed with my mom the whole time. In retrospect, all I can think about was how devastating this must have been for my mom. She was not sure what to expect. I was not sure either; but when it’s your child it is different.

I was so full of morphine, I do not even remember if it hurt or not or if I was coming or going. I was eventually transferred to ICU, which was my new home for two weeks. I barely remember who visited me during that time; I do know my mom was constantly outraged with nurses because they let anyone in to see me.
The one thing that I do remember is my sister wearing my jacket, using my purse and sporting my nice white shoes. Oh my goodness, I was so mad I yelled at her and told her to take them off. My mom kept telling me that I told her she could borrow them. Yeah right, as if I would lend anything to my sister, she so annoyed me. The nurse kept trying to calm me down I was screaming at her. The nurse said it is raining outside, “do you want your sister to get all wet and then maybe get sick”. I said “sure I do not care”, okay maybe that is a little harsh but then again I just had brain surgery and was on morphine.

As the weeks passed all I could think about was what was going to happen next, was I going to survive, was my vision going to improve (I had double vision after the surgery), would my hair grow back, would my balance get better (my equilibrium was affected a little). Most importantly, what about the headaches were they ever going to go away. At the time all this was happening I honestly was not that concerned. I wondered what was going to happen, but I believed, like all teenagers that I was invincible.

Knowing what matters…

As I continue to express my story, the one thing that comes to focus for me is my children. How would I feel if they had to go through the same thing I did. My son was born with a club foot and I remember how devastated I was at the time. No matter what, when your kids are hurt in some way you wish it could happen to you or you could fix it. As I stated before I know that is how my mom felt, she took it pretty hard and at times I felt like I had to stay strong for her. I realize now it was in fact, her strength that kept me going.

It amazes me the things we teach to our children and things that we have learned from our parents. Not until now that my mom has passed can I really be grateful and thankful for the things she has passed on to me. Do not get me wrong some of those things I would rather give away, I am only human after all.

Due to the severity of my case, I was admitted into the adult section of the hospital. Even though I was still considered a pediatric patient, what I was going through was so adult like. Brain tumors rarely occurred in children at that time. It amazes me how many children today are diagnosed with the same type of tumor I had. I remember my room being changed several times, once because of all the traffic to my room and once because a patent next door did not like the smell of all the perfume my friends had on. When I think about this, I have to laugh.

On those first few days after my diagnosis I had went through a variety of tests. I remember just going through the motions. My family and friends came to visit me constantly it was a difficult time. It was not an easy thing to talk about or even explain. I called my family in Massachusetts and talked constantly with my brothers and sisters. I was not sure what was supposed to happen, it all seems like a blur to me now that I am older. What I considered devastating at that time, is so different from what I consider devastating today.

The night before my surgery was dramatic for me, I prided myself on my long beautiful golden brown hair. A tech came in with shaving equipment to shave my head, I was mortified, I kicked and screamed like you would not believe and made him leave. It was then I decided that it was best to shave my head when I was knocked out. I did make my Doctor promise they would only shave what was absolutely necessary. It is funny what I deemed so important those first few days, I can’t help but laugh at myself today.

I am happy and feel really blessed that I came through with little or no side effects and I count my lucky stars. Sometimes it is all just about the little things and appreciating what you have. For me is knowing what truly matters.

Mother’s Love…

Reliving my past, I thought would be hard for me, I think I have always avoided what I had gone through all those years ago, when I was first diagnosed with a brain tumor. At this point in my life, I have concluded that sharing is so therapeutic for me. I look forward to sharing my story with others, having a brain tumor and cancer is in-fact a part of who I am.

As I type this, I think about all of those little things that have made a difference in my life. It is funny at 16 what you deem to be import is of little consequence. Some of the things I thought I would not remember at all, are actually in the fore front of my mind at this moment. All of what I was going through seemed so surreal to me, I kept thinking is this really happening?

My Mom was so stressed out that first day, I remember she called my pediatrician for a referral to see a Neurologist, which was not easy. My mom had a hard time getting me into see someone, then again this was 25 years ago, and it was not like there were pediatric Neurologist available at every corner. I remember the Doctor I ended up seeing, said to me that most of his patience’s have no or little teeth. I was not sure how to take this, was he kidding or did they lose their teeth because of something he did. Actually, in fact he was amazing.

The first thing he did was scheduled me for a CT Scan, however they did not realize that I was allergic to the iodine. Here I am laying on a table ready for a scan and I started choking and broke out in hives. Dear me is all I could think, I did not want to run into anyone I knew or a cute boy for that matter, basically the only thing I could think about right then was how awful I looked with all those splotchy spots all over me.

So at this point something is up, they discovered I did have some sort of tumor pressing on my optical nerve. I was then admitted to the hospital, my Doctor stayed with me the whole time and explained everything. He continued to tell me I would need to have a variety of tests including an MRI scan the next day and then I would need to have the tumor removed.

My parents stood outside my room as he explained this to me, at the time all I could think about was how my mom seemed so upset. Now that I have my own children and because I have met other parents, that have had children with tumors that she probably felt like her heart was being pulled out and she could do nothing to fix this.

Sometimes we can’t see what is right in front of us, maybe in part I thought my mom was being selfish, all she could see was how this affected her. Now I realize when it is about your child in all essence it is about you. Now that it has been over 7 months since my Mom passed away I can truly thank her for being there for me. It must have been difficult for her, knowing how much she loved me, It was that love and strength that got me through.

My Brain Tumor Story Continued…

Some things, do come back to you when you least expect them to, like my mom always said when one door closes another will open. Over, the last 7 months since my mom passed away so many things in my life have changed. I feel as if, it is finally my time; the time for me to really focus on the things that matter most to me, and maybe part of that is just expressing things that have transpired in my life.

Last week, I started to tell some of my story, about my brain tumor and what I had to go through. It amazes me when I really look back at that time in my life; I realize there are so many things, which mattered so much to me at that time. In part, it is what has made me who I am today and there is so much more I wish to share, some good and some bad.

When you are 16 years old, you think you are invincible, it was true, for me anyway, I thought I was. Maybe, just maybe, that is what helped me get through. Technology was so different way back then, people did not survive brain tumors at least I never met any that had.

The one question, that comes to mind for me today is, was I lucky, did I have a guardian angel, or did I just have a really good surgeon? No matter what, I survived and thrived and I am so grateful that I can share a bit of my experience today; it is who I am and is in part how I got here.

The first thing I would like to express it about the day I found out I had a tumor, my mom was in the garage talking to my step dad and telling him what the, “Ear Nose, Throat specialist had told her. She was out of control, on the ground crying, I had no idea why? When, I questioned her I was crying uncontrollable too, I was not sure what was going on. When she finally told me, she said you have a tumor or a cyst in the base of your skull.

So, at this point I am thinking “what does that mean after all I am only 16-year-old”. Well, as I looked at her perplexed and cocked my head to one side I said, “Does that mean I do not have to go to work today?” She said no, and looked at me confused. I then said okay, stopped crying and called my boss. He was a little stunned; I did not understand why, “what’s the big deal?”

At, that very moment I thought, boy, older people make a big deal out of everything! “Really”, it’s not the end of the world, like I said; when I was 16 I did not think anything really bad would happen to me, who does when you are that age. Now, that I have my own kids today, I realize it felt to some point like the end of the world, especially for my mom.

My Story…

Last week, I shared how I was found by a group of parents that have children with Ependymoma tumors, like I had 25 years ago. When I received this introductory email from this group I could not stop crying, it really moved me. As I mentioned, in my earlier blog, for so long I have wanted to meet people who have gone through the same thing as I had to some degree.

The first thing I needed to do, to be introduced to this amazing group and I needed to tell my story. As I sat there trying hard not to cry while I typed, all I could think about was why I have never done this before. I count myself really lucky that I can put my feelings down on paper so easily, but for some reason sharing about myself when it came to my brain tumor and what I went through was hard. It is, one thing to express my feelings when it comes to a loved one, but for some reason for me it is different when it is about you. So, at this point, the best thing I can do for my self would be, to share my story little by little, my battle and struggle with cancer.

It all started when I was 16 years old and I started having headaches around my eyes, then black outs & vomiting started on occasion. I went from an Eye Doctor to an Ear Nose Throat specialist then a Neurologist. After various tests, it was determined I had some sort of tumor or cyst. Later I was eventually diagnosed with a Fourth Ventricle Epedymoma Tumor stage 3. It was Malignant, I ended of having radiation the summer of my senior year I had 32 treatments.

It was located at the base of my neck where all your nerve ending enter twine together. It was the size of a grapefruit. My surgery took place at Mercy San Juan Hospital in Sacramento, California. I do have a few side effects but nothing life- threatening, for the most part I am in good health.

I really do appreciate this group for reaching out to me and I am very happy I have had the opportunity to join the group and share my experience. Due to the openness of these parents I feel as if something inside of me has been awaken and I look forward to sharing more of my story with all of you.