Sunday, July 31, 2011

My Darkest Times

This past week I experienced my very darkest of times during this whole radiation ordeal.  I had been burning and starving and completely disconnected to everything.  I shut myself off.  I got frustrated.  I went to a place so dark I didn’t know how I was going to get out.   I’ve been suffering more than I know how to explain.  The hunger, rather the starvation was (and still is) the most overwhelming feeling someone can possibly experience.  It’s difficult to describe.  My body has been starving itself to death.  My weight has kept on plummeting.  When I got out of the hospital – July 7th 2011, I weighed in at radiation at 105 pounds.  I knew this was mostly water weight because they kept pumping me full of fluid of I.V. fluid.  When I arrived home, I would get up 4, sometimes 5 times in the night to go to the bathroom.  A week later my weigh in at radiation was 94 pounds.  “An 11 pound drop in weight” the nurse says to me.  The following week we’re down to 92 pounds, then the week after it was 91 pounds.   Essentially my body has been eating itself and it feels like I’m starving to death.   There is just no amount of food that can fully satiate me.  I am on a diet of weight gainer shakes at 800 to 1000 calories a pop.  But when I finish eating my heart is beating out of my chest trying to digest. I need probably about 3,000 calories a day.  How does someone consume 3,000 calories a day? 
My whole life my heart rate has been extremely low at rest.  When they would measure it in the hospital it was in the 40’s– that’s normal for me.  Fitness and exercise have been a core of my life since I was about 13 years old.  I even have an undergraduate degree in exercise physiology!  Now my heart rate is 100 beats per minute at rest when I am digesting food.  It is very difficult to ‘rest’ when your heart rate is so elevated all the time.  It feels unimaginable that my body would be wasting away right before my very eyes.  Then there is the infection that rages in my mouth.   There are ulcers that cover my mouth and throat.   This makes it very difficult for me to speak at times.   Food does not taste like food.  It is disgusting.  It tastes mostly like sand in my mouth mixed with the infection.   My radiation oncologist told me that I would lose my sense of taste.  Eventually it should return back to its regular state but it will take a while.   I also can’t sleep like a normal person.  I’m on an extremely high dose of a steroid called Decadron – 4mg 4times per day.   I was placed on it while I was in the hospital.  They make me angry, impatient, completely disconnected, and awake for hours on end.  During the first bout of radiation the radiation oncologist and I decided not to put me on a the Decadron because usually it causes bloating and weight gain.  I had to endure a lot of pain at that time and I was on very high doses of Percocet.  During this second bout of radiation they put me on the steroid while I was in the hospital.   It changed everything.  I no longer have any pain.  I don’t need any oral narcotics but the steroid has made me a completely different person.  I’m almost positive that I’m overdosing on it.  Sleep is a huge problem for me as well.  I can hardly sleep at all – mostly because I am so hungry I need to keep feeding myself and then the digestion makes it impossible to rest at all. I’ll literally just sit and work for hours on end.  But I can’t manage to care about anything that I’m doing.  I notice that I can’t manage to care about other people.   On top of that, I’m confused.  I started to have cognitive deficits.  I noticed that I started feeling disconnected all the time and it scared me.  I would cry the drop of a hat because I couldn’t understand what was happening to me.  I noticed that I stopped caring about psychology – something that I know is my passion – but I couldn’t connect with it – it was an indescribable feeling of just not being able to associate to anything at all.  I was with Ili the other day waiting for my radiation and there was this lady telling me that she has lung cancer and she’s so sad.  I noticed first that I couldn’t follow along with what she was saying to me, her words were just lost, I was so confused that I couldn’t comprehend what was coming out of her mouth.  All I could think was, “Why is she speaking to me and who in the world cares about her?”  Ili noticed that I had this look on my face I could tell she was little freaked out about it.    She commented that I was emaciated and that I need to eat.  Everyone is always commenting that I’m emaciated.  That part is the part that I know.  I would look at myself in the mirror and I couldn’t recognize the girl that was looking back at me.  I hated looking at her – such a strong word and it’s the only one that fits.  She’s ugly.  She’s emaciated.  She looks like she came out of a concentration camp.  Her legs are just bones.  She’s disgusting.  She’s bruised because of the blood thinners.  All I can see is her ugliness.  I would put on makeup to go to radiation; I would try to smile at people but I knew that  was just being a total a fake.   My vision is also still blurred and I experience double vision.   It’s another thing that is driving me crazy.  I can see from up close and the doctor that I am seeing for my vision says that it could resolve on its own but so far it hasn’t.  These were all just constant reminders that I’m not well.  I was feeling so awful about having to go to radiation every day.  They make me lay down on a machine with this huge face mask strapped down to a bed that burns me every single day.  I feel it.  I taste it.  It’s been mentally excruciating.   I’ve just felt like screaming - somebody save me.  Then there were my poor dogs.  I was feeling so disconnected from them that I started having visions of killing them (no joke).  I told Nate that I was going to throw them off the balcony.  My parents really freaked out when they heard that!  Then there was God.  I didn’t know or remember that there was a God.  I literally didn’t stop to think of God. Who thinks of God when you’re starving to death and burning?  I couldn’t even manage to get myself out of a chair without extreme effort.   All I could do was wonder who was going to save me?  My body was just going to eat itself to death.  I had to take what seemed like way too much steroids, and I knew that the steroid medication was causing me to feel so disconnected.  I felt like I was overdosing on the meds.  On Wednesday my radiation oncologist started to wean me from the steroid- FINALLY!!!  My skin was also burning all around my neck.  The doctor gave me this excellent prescription cream but it felt like such an effort to put it all on all the time.  I had to do it because I literally felt the skin so hot all around me all the time.  Everything was such an effort. 
Yesterday morning at 3:00 in the morning I literally woke up.  I woke up after a much better day spent with my mother.  She made me laugh, and although I had some very hard moments I started to come out of it.  I slept for 7 hours and when I opened my eyes I looked at my phone and a prayer had been written to me by one of my parent’s friends that I do not know.  I took the time to comment on the last blog post appropriately titled, “Burring and Starving.”  I started sobbing of joy.  Poor Nate woke up thinking something was seriously wrong with me because I was crying so much.  I told him that I’m me again.  I could finally think clearly. I cared about everything – Nate, our love, my family, our dogs, my company.   I am no longer experiencing cognitive deficits, and I was touched, moved, and inspired by the Grace of God inside of me in a way that I can’t explain.  I felt as if a full embrace had been given to me.  It was something so beautiful that it felt like a miracle to me.  Right now as I write this I have my smallest little dog, Nike, asleep on top of me like the little angel that she is.  One of the most amazing things that came out of this is that we no longer have the dogs sleeping in the bed with us.  I literally became a Caesar Milan alpha dog over night.  I’m very proud of myself for this!
 Yesterday I spent time with my family and was able to fully engage and not be confused and care and laugh and enjoy life again.  I do feel that I’ll get through this.  I can tell I’m getting stronger.  My weight is also holding -maybe even going up a pound!  I can’t wait to get back to school one day and become the psychologist I’ve always wanted to be!  I never want to experience that kind of dark hole that I was in again.  It was excruciating.  I do still believe that I have been placed on an overdose of steroids and that is what is eating my body is making it so difficult for me to gain weight.  I’m not sure what kinds of steps I’ll take regarding this.  But today I am a fighter once more.  Today I know that I can get through this.  I’m working on breakfast already – weight gainer shake – been up since 2am and went to sleep at 10 – crazy that I just have to keep feeding myself but I’m doing it and doing it happily!
 I realize that I have the love of the most amazing family, and of course not to mention the most amazing fianc√© in the world!  I can’t tell you how much gratitude filled my day yesterday and already this morning.   Thank you to everyone that has been so concerned about me and that has been praying for me.  I truly believe that your thoughts and prayers have saved me!  I can’t thank you enough!

8 comments:

  1. Hang in there sister... This will all be a faded memory soon. We have so many wonderful things to look forward too. Love you always

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  2. Mari we graduated together. I am sorry you are going through this. Hang in there and be strong. God is helping you every step of the way. Trust in Him. I will pray for you and your family. Positive vibes r being sent your way.

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  3. God bless you Maria..we went to St. Brendan together and although I didn't know you very well your blog and your positive attitude on life, despite what you're going through, has touched me tremendously. Keep on fighting...you CAN and WILL overcome this. God Bless.

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  4. Maria, we graduated St. brendan together and we were acquaintances. Your story is inspiring and faith building. It is a reminder to appreciate the small things we take for granted. U r always in my thoughts and prayers. Ur words and Outlook are touching. With all of the prayers, God's grace and the Holy Spirit, u will be healed and u will fully recover. Stay strong. God bless.

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  5. Mari,
    I found out about this through a friend on faceboeok. I also went to st.b with you and I am so sorry. In the past few days things seem to have just gone nuts. It is a daily thing now, hearing from one person or another that life has changed in the most dramatic way. I am sending positive energy your way and hope you make a full recovery. Live every day to the fullest surrounded by family and friends....that has been a huge lesson to me in the past few years. <3

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  6. Hello Maria

    You do not know me. I heard of you through my cousin that went to St. Brendans. For some reason you've been in my thoughts and daily prayers. I will continue to pray for you and I want to ask you to seek God with a sincere heart and you will see the graces you will experience as a result. God Bless

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  7. Hi Maria

    It's Elena again (the one you don't know)..
    :-) I wanted to apologize as I have read through more of your blog and I see you have truly seeked God. I guess what I should advise is that you directly ask Him to heal you with all of your heart. In addition, it probably wouldn't hurt to consecrate yourself to Our Lady. Best wishes and God Bless

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  8. I have been following this website for more than 2 years now, admin kindly post and share this to give other brain tumor patients hope that they can get a cure.

    Three years ago I was diagnosed with GBM after a CAT scan. I went through neurosurgery, radiation, and 14 months of chemo treatments but the symptoms all remained and even doubled, the constant thundering headache, seizures was twice than it was before, i could no longer think straight and i had constant mood swing and trouble speaking i was almost feeling at the gate of hell because these symptoms were unbearable. I am retired but very active spending my time to make the world a better place. I retired from a career in law and non-profit administration, and judging from how active i was this new life was not working and i was patiently waiting for when i will give up the ghost. My husband never accepted the fact that he will lose me to the cold hands of death which was what made him to seek other treatment options and that was how he came across "elixir" a herbal medicine treatment which i took for 12 weeks and it gave me a second chance in life, gave me a new life and totally cured me of my cancer. My neurologist had told me before then while i was at the hospital that i had less than 4 months with the rate at which the tumor was growing and expanding. I am happy today because i am completely free of cancer because i have ran several tests and diagnosis because i am still in shock on the efficacy of elixir. Never give up hope or rely only on chemo or other surgical treatments because herbs work too, i never believed until now that i have experienced it. You can contact doctor Rahul personally for advise, counselling and how to get elixir on drghandiherbs@gmail.com I am grateful for every day that I am still alive and well.

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