This is about the daily struggles and miracles of waiting to die with a critical illness. I have brain tumours that can never be cured. When I received my diagnosis I was given two weeks to live, but it has been eight years, and many treatments . My life is for a reason and until I accomplish that I will keep “painfully waiting”. This is my journey.
I wanted to write a quick update to let all you readers know that I am still alive and am recovering from many hospital admissions these past few months. It has been a struggle for me physically, mentally and emotionally. I have even lost about 40-50 pounds while fighting, but I am trying to hang in there.
Along with all of my health issues and multiple illnesses, I am currently fighting a major bacterial infection that I acquired from contaminated IV fluids called, Sphingomonas paucimobilis. I was receiving these fluids as part of my treatment, but because of my lack of immune system my body was not able to fight this particular bacteria.
This bacteria should have been easily taken care of with antibiotics but unfortunately for me this was not the case. I feel like my body is actually breaking down. It’s like my organs have finally decided they no longer want to work and they are tired of fighting. Because I have no immune system to fight off the bacteria I have been on antibiotics for the past eight weeks and am scheduled for another four weeks. I currently am hooked up three times a day to my PICC line for the IV antibiotics and I can’t wait to be done with them. My veins are no longer usable in my arms to take blood from so they have been taking samples from the veins in my feet. I can’t begin to describe how painful this is, and they also run IV sites when needed in this location as well. The worst thing about it is all the sites get infected because of this bacteria in my blood.
As you can imagine I am exhausted and weak, and have been instructed to sleep as much as possible. Hopefully with this rest my body can fight off the infection and I will be back to writing as soon as possible. In the mean time I am hoping to have a couple of guest writers who will talk about their life experiences. These entries will be about their journey with a brain tumor, or experiences with the hospital and being sick. Some might just be about living life in general while others hopefully will just be funny tales to make us all laugh.
I hope that you all stick around even though the blog entries are not as frequent while I am trying to recover. One thing I will try to promise to work on is some of my bucket list stories that will be sure to make you laugh and cry. I am trying to make the blog more uplifting like it was at the beginning before I was so ill. One entry I promise to write about is my new tattoo and the meaning behind it. My tattoo was inspired by the ten week stay in hospital recently and is a great story.
I am out of the hospital and am trying to take it one day at a time. Eating is an issue as my body is rejecting solid food and even some of the liquids we are trying to prepare. It is a good thing that I had extra weight on me due to the steroid treatments I am on, so that I had some pounds to lose. Everyday has been a struggle and I have noticed it hard just to get up in the morning, I am so exhausted and sore.
I am finding it so hard to talk about, or even write about, my experiences from the last ten weeks in hospital from when my experimental procedure failed. I do not even know where to begin to discuss the trauma and horror show, it was continuous. My head is still bombarded with flashbacks and memories, and all that occurred from the experimental treatment. Not to forget the gong show that happened because of it. The memories are permanent, and I will admit, I am afraid that I might lose my mind because of all the new medications they have me on now.
During the treatment I ended up being trapped in my own brain. I was literally TRAPPED! There were two Pamela’s. I knew everything that was going on around me but could do nothing about it. I was unable to communicate what was happening to others and I was unable to tell them that I (the original Pamela) actually still existed and was still alive. Because there sprung out another Pamela who began to regress as time passed. I regressed all the way to about a three-year old. I was walking with a walker and no one could understand what I was saying because it was gibberish that made no sense. I was trying to communicate that another Pamela was trapped in my brain but it was hopeless. It was hell.
I hope that everyone’s summer is going well. I am out of the hospital but it has been difficult. I have found myself unable to keep any food down and have been surviving on peppermint tea and vitamin water. As you can imagine my body is struggling and starving. I am hungry but can’t keep anything down. It is so embarrassing because when I go out into public I have to keep a bowl or bag to be sick in.
My nausea is so bad and the doctors have given me the strongest anti-nausea meds, and they just are not working. I wonder just how long my body can actually handle not having any nutrition. I have tried eating just little pieces of cereal or crackers only for them to come back up within minutes later. There are times when I think to myself, and not lightly either, that I would actually trade in my nausea for more pain if I could.
I just want you all to know I am out of the hospital and back home trying to recover from just over nine weeks of fighting to regain some sort of health. It might take me a few days, or a week, to get back to blogging since I have to still wrap my head around all that has happened. I also have to absorb the miracles I witnessed and try to put them down on paper.
I want to thank you all for staying with me even though I had not written anything for weeks while in hospital fighting for my life. I was blessed with great doctors, nurses, care aids, and roommates all who helped me recover, even when I was fighting against their wishes when I was confused and septic.
One thing I hope is that my brain can still work the same now after all that has happened and with all these new meds. Truthfully I don’t feel the same and I am finding that I am struggling to write. Hopefully this is temporary and happens to writers, like after they take a vacation.
Speaking about vacations…… We are obviously not on the cruise to Alaska. I did not get to go on my bucket list cruise and take my mom on a Mother’s Day cruise because I was sick. Guess what happened when I went to get my money back? Norwegian Cruise refused to give me my money back. They took my money and said, even though I gave them a doctors document signed, “No”. I am so angry I can’t even talk about it right now. I feel like they have stolen from me. I am on disability I have saved up for a very long, long, long time. Now that money is gone along with my dreams and my mothers present. And my Mother is so deserving of a gift and a vacation. All she does is watch her daughter die, it would have been nice for her to see her daughter smile.
It has been a long time since I have checked in and was able to write for my blog. As some of you already know I was extremely excited because I was looking forward to coming to Vancouver for a four-day medically induced coma. Where I would be completely out of pain for four days while the doctors try to figure out a way to get me out of my extreme pain. Especially since my new diagnosis of Allodynia they have tried everything.
When I arrived at the hospital it was March 11th and I arrived bright-eyed and ready for anything. I had hopes of sheep bouncing in my dreams, and yes, my sheep had numbers on them like the Seely commercials!! Anyways, my hopes and dreams of having four days of pain-free sleep were shattered when mom and I realised there was a big mix up in communication between my doctors and specialists.
As you have already noticed by my lack of posts I have not been well. I went for a procedure and the outcome was not as expected. My brain is now registering things it is not supposed to. Such as my nerves are noticing my glasses on my face, the wind on my skin, the weight of my clothes, how heavy my hair is. This would be a cool party trick if it was not so painful. It is unbelievable, the pain is intense and constant. All my nerves that are supposed to be asleep are now awake.
Now the doctors have been trying to fix the problem which ever way possible. I know I complain a lot about my pain but now my pain has been ramped up so bad that the doctors only had two choices; put me on loads of extra pain medication or to sedate me. They chose both options.
Over the Christmas holidays it was hard for me to really enjoy the company of my family while I was in so much pain. I was just so uncomfortable and I had a hard time expressing that I just wanted to hang out with them and enjoy being around my family and their children. Everyone was so full of life and it was so great to see.
The kids made me smile and the teenagers made me proud. They have grown so quick and are so mature. In one moment in my life (16 years ago) I am holding an infant child, kissing them and changing their diaper. Now they come give me a hug and are such big boys they tower over me. One thing I love about them is that they are gentle and loving all at the same time.
Instead of enjoying the wonderful company of my family 24 hours of the day I ended up in the hospital. But the real shocker was that my mother ended up in the hospital as well. As you all know she means a lot to me, and without her I would be lost!