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A long awaited update

Posted Sep 11 2009 2:16pm
It has been a long time since I have blogged. I could chalk it up to many reasons including being busy or tired, but the truth of the matter is writing down what is going on makes it all that more real and there is some that has not been good. Let’s cover the good stuff before we talk about the not so good.

There have been many highlights in the last couple of months. In March my family threw me an awesome birthday party. Lots of my friends came. I asked them to bring photos, memories or stories instead of gifts. I am so blessed. Some people never learn how many people love them or the impact they have made on others, but I have been lucky to have that opportunity. Maybe that is one of the benefits of going through a life threatening illness.

I had a whirlwind spring. In April I walked in a 5K which was incredible and then I went to Camp Mak-a-dream in Montana. They had a retreat for Ovarian Cancer survivors. I met many wonderful women and learned from their experiences. In May I went to the Virginia mountains with my church for a retreat. It was beautiful and a great opportunity to visit with so many friends. A day after I returned from the retreat I drove to Missouri with my parents for my nephew’s high school graduation. I was so honored to be a part of that day with him. I can’t believe his is 18 and on his way to college.

In mid June the whole family including my sister and her family from Missouri headed to the beach for a week. The weather was not that great, but the company was terrific. I love spending time with my nephews. It was a little crazy with 13 of us and 4 under the age of five. I made some great movies of me and my nephews.


After my two months of travel I was exhausted and took some much needed time for rest. I was laid off from my job at the end of April and although I miss working; helping people, interacting with my co-workers everyday and having a reason to get my butt moving in the morning; it has been good that I am not working. I have been able to spend my days resting and seeing old friends and family. My health has been getting slowly declining.

I learned in April that the cancer had spread to my brain. This has added more symptoms to my already overflowing plate of ails. Breathing has been slowly getting harder and I found out recently that it is not fluid that is adding the pressure, but the tumors growing and compressing the lungs. This unfortunately means that there is not much they can do to alleviate the pressure and make breathing easier. I use inhalers and a nebulizer a couple of times a day. The goal is to ensure my airway is as open as possible to make sure that I am getting a deep a breath as possible. I have been having a lot of numbness in my hands and feet and have notice weakness on my left side. I am not sure how much longer I will be able to drive and that will be hard to accept. Giving up my independence is one of the hardest side effects of this disease to deal with. One of the things I notice the most is my loss of short term memory along with the difficulty of finding the right words. This is probably more noticeable to me than others, but is very frustrating. Sleeping has been a struggle. It is not uncommon for me to be up until 4 or 5am. It is so lonely in the middle of the night. I have many people who love me and are there for me, but in the dark the reality of life hits you in your face and sometimes I want to be held so bad it hurts. I think that if I can only put my head on someone’s chest and hear their heartbeat, I will be able to fall asleep like a baby.

I am not sure how much time I have left. My gut is telling me only a couple of months tops. I know this is hard for others to accept, especially since I don’t look sick. I really don’t let others see how bad it is. Mostly people just see me coughing and having shortness of breath, but it is so much more.

Last week a friend and author of a great guide to young adults with cancer came and visited me. She videotaped me while we talked about the issues that young adults face at the end of life. I was a great conversation and very cathartic. I hope that by telling my story and my struggles with dying that I will be able to be a guide to others in the same situation and maybe a comfort.

I am not afraid to die, but want somehow to make it easier on all those around me. Well enough ranting for now. I promise to write more often and provide updates.
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