The harsh reality of life with a brain tumor
Updated: Sep 20, 2018
The Reality: Well thats the first step...realizing the new reality of your life. **Throughout this blog I will be switching tenses on how I view things, how others have told me they view things and what people I know without cancer have asked me about.**
Now on the outside you may look normal or are able to make yourself look it but deep down I feel you and know what you are going through. It hasn't been and won't get easier...or one day will it? We hope and pray that is the case because this is sure exhausting. We may look like we are ok and not sick but that is not always true. We don't want to scare people, make people sad or think we need you to feel sorry for us but maybe we are not truly showing you the REALity of what cancer really does to us, our family and deep down inside. This new life is with a brain tumor and that will never change. I learned to accept it and you should too. Friends and family need to be accepting, kind and understanding as well..this is my new life...I may be different as hard as I try not to be .I have brain cancer and from here on out always will..there is no cure for brain cancer and unlike other cancers, you cannot remove your brain so you're stuck!! There is no 5 years "clean" and you are cancer free. The few treatments available are 21+ years old and there haven't been any real breakthroughs. You see trials done all over the internet for killing tumors but none of them are even close to being on the market for patients, especially brain tumor patients. The options are limited and nothing can determine whether the tumor will one day completely go away or will it stay small and stable enough and you can live with it...hopefully forever and the even more frustrating part is your doctors don't have a clue either. Seems the tumor is and always will be there. It has taken over and any little thing you feel that could be wrong brings on the most horrible anxiety and fear that it is growing back. It's in your head...literally!! A headache, earache, eye twitch, neck pain, even pain elsewhere in the body is concerning and makes you panic like the cancer has spread or caused something else to go wrong. You pray to God it never grows back, if it does, the future may not be what you picture and dream of and that terrifies me. I am scared to death of death and think of it way to often :( It is easy to say "don't think about that" or "stay strong", "you're gonna beat this", "I can't imagine (NO you cannot), "Hang in there"....What is the right and wrong thing to say to a cancer patient anyways? It is an awkward topic and subject but anything is better than nothing. Ask questions and if you see that person getting uncomfortable then stop and let them know when they are ready or ever want to talk, you are there. Also a little research goes a long way (but don't ever mention if you read something negative or your friend had the same tumor but she died last month)...YES this happens.....you want the person to be positive, stay on the topic of positive. Find some positive stories of survivors and share those!
How I deal: As I usually say, I just do. I have been dealt this card and I am going to win. I am only 32 why can't I just think of the future and stop thinking of the what if's....it is way harder than it sounds...trust me :( It isn't every single day but ugh its way more than I wish. I am very positive and very hopeful for the most part but it is so hard when every single day I see someone in my support groups passing away. Many of them my same tumor family and all ages. The prognosis for brain cancer isn't good...it is a deadly cancer and claims the lives of too many people daily, especially children. It breaks my heart and scares me. I am just getting started on this new chapter of my life, I need to be here. I just celebrated my 1 year wedding anniversary September 2nd, I turn 33 in October, we need and want kids so bad and I cannot wait to be a Mom (this is what keeps me happy and going most the time is knowing I will have kids sooner than later, I HAVE to) I can see the vision so clearly. Just seeing kids brightens my day...I am lucky there are so many always around where I live. Imagining my parents as grandparents and my sister as an Aunt makes me smile and I cant wait to see it. Although I can't get pregnant like most woman because of the huge health risks involved I know a surrogate will work out. THIS is not it, this is JUST a chapter....a shitty one but not it. There is more to my life and I will make it happen. I am so determined, I will have children, I will shrink this stupid tumor, I will be cancer free, I need to create more awareness of brain tumors, I need to explore the world more, I need to do more, I CAN, I WILL, I MUST!!!
What you never see: Not to mention all the feelings and side effects we experience, this entire new life is draining, stressful and expensive. We don't plan to spend it all this way! All my years of hard work and saving for my future has now all gone to my present. My monthly medical expenses are near $1,400 and that's just to survive. I am incredibly fortunate to have had a GoFund Me set up by my sister Kiersten. That has helped so much to keep me healthy, positive, hopeful and able to try holistic approaches that I know are working so well! I look and feel great most of the time and I know it is not normal. I am lucky and so thankful. Not many people are handling all this the way I am so a big thank you once again to everyone that has contributed to making this possible. I am able to use 100% pure cannabis oil (THC/CBD 1:1), essential oils, acupuncture, eat an organic keto diet filled with LOTS of supplements, meet with neuro cancer specialists like a naturopathic oncologist and plan to meet another in Spain soon, try therapies to rid of nasty toxins that are put into my body monthly and I was able to move back to Portugal and get my treatments done here which are not covered by insurance so everything is paid out of pocket. On top of these costs are the costs we will have once we move forward with having children, the cost of IVF was close to $20,000 and the total to have a surrogate is up to the $100,000 range. It will all be worth it but just to put that out there...this is the reality!!
Life today: I find myself referring to life as before my brain tumor and after my brain tumor. They are different, as hard as I try to do what I did before, I can't. My body constantly aches, my head hurts, my right ear now has tinnitus and so clogged up at times I have a hard time hearing, my mind and thoughts are foggy, all over the place and I feel different. It sucks. I am on monthly rounds of 5 day temodar chemo where I spend a week nauseas, my husband or Mom holding my hair back as I throw up and following me to the toilet each time they hear me go into the bathroom (which would be ok if it was sickness from being pregnant but no this is because I have a brain tumor controlling me), super anxious, headaches, tired, achy and unable to do what I need to do. It is depressing and a time where you feel you are literally fighting for your life, normalcy and would do anything for it to go away! Before having a brain tumor life was so easy. All the things that used to get me stressed, anxious, upset, sad or overwhelmed seems so petty now. I have had a wonderful life and am so grateful I have done so much. Traveled the world, owned my own companies, lived abroad, made money and could do what I wanted with no stress or worry ...the list goes on. This all started just 3 months after my 30th birthday with a grand mal seizure in January 2016, then surgery, then a diagnosis of a grade 2 Oligodendroglioma low grade cancer, watch and wait MRI's every 3 months...which if you don't live in the cancer world is the most stressful waiting period EVER. You are waiting to hear what your future holds. Watching and waiting...good results, you can now breathe for the next 3 months until....again watching......waiting...ugh....... for what!?? the tumor to grow back. If? When? Progression? You know there is only 2 options, you are stable and looking good or right there in an instant your life JUST changed and it was not the news you ever expected to hear...possibly hear again. We call it scanxiety and OMG it is so REAL. I am actually going through it this very second waiting on the results from my MRI I did 2 days ago!
The future: I truly am positive and hopeful what I am doing is right and will work! What you see on my social media is pretty much always positive and that is because I am. I also don't want to scare people or make them sad but sometimes the outside world has no idea what it feels like to be on the inside. I live my life happy with positive vibes and know I am so lucky and so blessed. It could always be worse. I have an incredible husband, the most supporting and helpful Mom and Dad, younger sister, family and countless friends. I have all the support I could ask for....but none of them know my pain..and I don't want to show it. I am different now having gone through all this, I will never be the same, be able to do what I used to and the more treatments the worse it gets and the scarier. I've had my skull cut into and put back together twice, that is called brain trauma and I feel it. I have undergone 6 weeks of radiation straight to the brain and months of chemo. My memory is not the same, I am tired, I am sad and I am scared as hell of the tumor coming back. I break out in random bursts of tears (currently typing this) thinking of surgery and recovering and how scary it was and still is. I can't believe I did all that....twice. The after effects can be just as bad, PTSD is real. I have been told different diagnosis', life prognosis I was told I would be lucky to live till I am 40....Maybe reconsider having children because I probably wont see them graduate. THESE are the things I have held back. It is easier to be positive and show the positive and live the positive. But that is not the way it always is. If you could feel my pain, my fear, my anxiety, my stress....but I pray you never do then you would understand.....And those that do, I am here for you!!!We can and will get through this!!! I am lucky to have met so many amazing people on this same shitty journey but it is such a sigh of relief to chat with you all and know I am not alone in this. Being diagnosed with stage 3 brain cancer at the age of 32 was the most shocking and devastating news I could have ever received. I just got married, celebrated being almost 2 years tumor free, was ready to plan my future and then I received news it was time for surgery #2, my tumor changed to a grade 3 Anaplastic Astrocytoma and would require radiation and a year of chemo. Google it then ask me again how I am feeling...NO DO NOT google it!! Google is the best and worst thing ever, but as a patient or even friend Google is very depressing. Oh yeah also besides all that fun stuff I found out that I wont be able to get pregnant so we went in to do IVF and freeze our embryos which lead to a blood clot in my brain and the tumor growing even bigger (Thank God it grew bigger before surgery but did make it harder to remove). This was all caused by the hormones and the reason why it would be way too dangerous for me to get pregnant. **See "Should I get pregnant with a glioma" for those blog details.
Everything about this is hard but one of the worst things about all of this is a feeling of being stuck. The feelings of uncertainty about my future. I may not "look sick", "be bedridden" (although I have been more then I would like), "lost all my hair" or the one that gets me is your lucky your chemo is a pill- Yeah it is JUST a pill.... of poison that destroys my body and fucks up a week of my life every month. There are comments some people make and you just wanna say- Oh yeah wanna try it? Or a lot of times I would love to switch places with you. Cancer is an awkward topic and I get it is hard to know what to say but don't give someone a look like they are dying, or say it will be OK...you don't know...truly.
So you feel me?? If you have no idea what I have been going through and now do...it is OK. I will be OK. I am OK. I just want you to know the reality of my new life...and for all people going through cancer....certain comments and things I have heard have upset me so I felt the need to put this out there....and not just for me and brain cancer but for EVERYONE going through any type of cancer. The most common comment I get is "ugh no one gets it" so maybe this can help...a little. Any kind, any age, any body part, IT SUCKS. Cancer sucks!!!! And if you are feeling the same, what do you do? YOU LIVE. If we live our lives worrying about the future than what good is living? Live everyday like it is your last and do what you want. Do you!!! No matter what anyone says believe anything is possible. Don't take no for an answer or believe the statistics out there because there is always hope and a chance to turn the no into a YES! Take that trip, buy those shoes, dance on the table and drink that champagne (extra brut, 0 brut or brut nature--No sugar added Keto approved YES ;) that is correct) Game changer! No one lives forever and although someone may have tried to tell you your expiration date which has haunted and won't leave my head and possibly yours too. Don't believe it. I don't. I know I have a long life ahead of me, I just do. I know it and I know you do too!!!!! Lots of love, health and happiness! XOXO