Tuesday, February 26, 2008
I am working very part time and receiving radiation to my lungs (first round.) I did cancel my contract with Hospice. It was a combination of a strong feeling I had, and just a simple desire to keep fighting. Even though I made the decision originally, I couldn't come to peace with it. I tried to convince myself, but I knew it wasn't time for me to make that choice - not without trying the treatment for my lungs.
Of course with all of this, I am receiving the nastiest side effects. Right now I am experiencing some neuropathy in my feet, compliments of chemotherapy. Sometimes it feels as though I am walking on rocks barefoot. Radiation is bringing its own lovely side effects as well. Guess I am as pretty as a picture :-)
There really is so much to update on, which I will in the coming days. So much has happened with my mom (both of them) my reunion with my entire family and with Cameron. For now I must go, I have a lunch date with my good girlfriend.
Hugs to all,
Thursday, November 15, 2007
I've wanted to give an update and since stopping chemo I believe I have the energey now to do so! I am still in nursing school, haha! I won't give up. I've got only until mid December, why give up now? I'm doing home study at the moment, but I will be there for the graduation and I've completed all but 3 assigments to make up for clinical days. I may never work as a nurse, and I am OK with that.
After my last consult with my oncologist, I decided to meet with hospice and I signed on with them. The cancer is not only all throughout my peritoneum, but also in my liver and my lungs. I refuse to have raidation on my lungs because I've not yet seen it work and I have however, seen it cause esophageal contriction amongst other things. So the beast has won, I guess you'd say. I still don't feel 100% content with my decision, but I know that is fear of the unknown and the afterlife, the uncertainty of what is there for me.
I am just now coming to terms with the fact that the lives of the children I've touched throughout my 25 years of life may just be what I was here for. In time, I will accept that, I still struggle with thoughts that there was more for me. I guess time will tell.
So that is where I am at. If you email me, I will give you my phone number to keep in touch. I will still add Cam and Kieran on my blog to post updates should the time come that I'm not able to. As soon as I graduate, you can expect daily posts, if I am able. At this time the plan is to graduate and move to my biological mother's house. I know that causes some controversy, but I feel in my heart it is what is right.
Love to all,
Saturday, November 3, 2007
I've been taken off Gezmar (chemo) temporarily due to my CBC counts. My white blood cell count that in a normal person should be between 5,000-10,000 is 900. My Red blood cell count, which should be between 12-16 is 10 and my platelets which should be between 150,000-450,000 is 48,000. So my oncologist feels (and I agree) that it is too dangerous to proceed until these rise.
My oncologist has also palpated a mass on my liver, which means that is is possible (nothing is for sure) that it has mets to my liver. I am also scheduled for lung testing because I have pain during expiration, which isn't too typical of lung metastasis, but still possible.
My decisions at this time include school and further chemo. If I do in fact have mets to my lungs, I think it may be time to look into hospice care, although my oncologist still wants to fight it, even if mets to the lung, because of my age. But I truly believe in quality vs. quantity and I'd rather have the cancer kill me than the chemo kill me. My tumor markers have doubled within the last month as well.
I wholeheartedly believe that I am here for a reason and sure, I hoped that would be to live a long, healthy and productive life but maybe I am here for other reasons. Maybe I am here to continue to make the difference in the lives of others with cancer, especially children, which is where my heart is.
My other decision is about school. I wanted this so badly. I wanted to become a nurse, even if I died before being able to work as a nurse. I wanted to complete this program. But it may not be in my cards. I am behind many clinical and theory hours at this point. I have been making up my clinical by volunteering at Children's and Hospice and I've been making up some theory buy wrting care plans and case studies, but I still have another full semester after fall. It's something I have to really think about and I guess that probably depends on the possible mets and what prognosis that would be.
If I stop chemo permanently, I want to travel, I want to spend every moment possible with my biological family. I want to do all of those things that most people never take the time to do. I want to hold the hands of dying children more often than I've been able to. I want to do some incredible things before I die, because I want to make a difference before I go. What is life worth if you haven't made a difference?
So as the title of this post states, I have lots to think about and decisions to make. My oncologist has become a friend, and I can't let her make these decisions for me. I need to consider all of the facts and the stats. I need to use my own knowledge to make the best possible decision for me.
So that is where I am at.
I am sorry that this wasn't a happier post.
I will be adding my brother Kieran and my significant other, Cameron, to my blog as an additional poster so that they can post when I am unable or if things change because I do have internet freinds that I care for and would like them to have updates - the good and the bad.
Hugs to all,
Saturday, September 22, 2007
I have decided not to pursue beyond my RN and head towards grad school until I am in remission. I tire easily, and I'm sick most of the time. I do however get to wear these cool animated surgical scrub hats around the hospital. :-)
My relationship with my adoptive family is slowly healing with many ups and downs. The relationship with my biological family continues to grow and is beautiful, all of the time. My mom was here just last weekend and once again, we had a wonderful time.
My relationship with Cameron is growing too. He is here most of the time, we basically "unofficially" live together. He's a big source of support for me, both when I am studying or when I am sick from therapy.
I will get labs done next week and I'll know if I am responding to chemo. I asked my onc. if I could read my chart and I was shocked at much of what I read. I was unaware that they did a restaging of my cancer early on and put me at a stage 4 as opposed to the stage 3 that I was told. I was also shocked to read that palliative care will be "explained" to me if this chemo protocol doesn't work. (As if I need explaining)
Fortunately I felt better after talking to my doctor and she explained that although palliative care is something we may have to look at in some point of the future, writing it now, so soon, is something she needed to do for insurance purposes. Sigh.
I have the will to keep living and I have not yet developed an acceptance of death. I hate crying about the fact that I'm too young to die when I watch children die all the time, when I see Briana looking death in the eye and being so brave. But I truly do not yet feel as though it is my time. There is too much for me to do. Too much I have planned for. Maybe that's selfish, but it's just where I am at. Today.
Friday, August 10, 2007
As I’ve written before, my adoptive parents adopted a healthy infant but now have an adult adopted daughter that is not well. Does that matter as much? Is it less difficult to deal with illness or disease when the child has become an adult and your needs to parent a child have already been fulfilled?
Her comment also made me think of the fact that being adopted alone alters the state of the mental health of a person; doesn’t it? Doesn’t mental health matter as much as physical health? She has not once stopped to think that the act of separation of the mother and child will forever alter the mental state of this baby. Even if this child grows up to be overall emotionally well adjusted, being adopted does come with a price. You forever feel an emptiness that is impossible to overcome, even with reunion. Even when the outward appearance shows a strong sense of positive self-esteem, you forever feel an insecurity of letting someone love you. You forever worry about pleasing those around you, so you sometimes walk on tip toes to avoid upsetting people.
Being adopted doesn’t only change your name or your experiences, it changes who a person is. Our experiences in life shape who we become as members of society. The people who raise us as children guide us into who we become and what we contribute to that society. This changes who we are, or I should say who we were supposed to be. Just pondering who you were supposed to be, would have been, or should have been is an altered mental state; isn’t it? Why would people wonder about their other self? Shouldn’t there only be one self in order to have a truly healthy mental status?
So what if a baby is born 8 lbs, 20 in., with all 10 fingers and 10 toes. Does that guarantee health? What is meant when they say "as long as she is healthy?" Does that just mean that you hope the baby is delivered safely and free from outward medical concerns; a child you can bring home and dress up, show off, take to school and play house with? Does it matter if your child grows up and finds out at age 24 that she has cancer? Does it matter if your child grows up hurting inside while trying to merge the pieces of two different selves? Do either of those matter at all?
Tuesday, August 7, 2007
Good life -- for the first time in my life (I think) I am remembering so much of my childhood; from not being allowed out until senior year of high school to hiding in the bathtub so my father would not kiss on me with his whiskey breath; from driving to school with smoke blowing into my face; to my mother yelling at me when I was more than 2 minutes late out of class: trying to find my jacket, backpack and lunchbox in order NOT to get yelled at. I could never win.
I remember being embarrassed when she would go on field trips with me because she would always make a scene; while all other parents had fun, she would have us single file, like robots, not allowing us to stop and see the secenery, which was the point of the field trip.
I remember my dad would sometimes find me in the bathtub and pull me out and give me those kisses anyway. I would remember he would tuck me in and tell me about the birds and the bees and touch my chest while telling me how someday I would grow "breasts." I look back now and I see abuse; though he would never admit to it.
I dreaded either of my parents being or coming home. My mother stayed home and most of the time there she was as I would walk into the house. I recall never, ever, being good enough for her. Nothing I could do was good enough. My grades were perfect, but I was still not good enough. I remember sitting at the dinner table with a home cooked meal sometimes and just wanting to throw it all up, because being there made me feel sick.
Most of all, I remember my father coming home filthy drunk, the smell of his breath still with me. God, how I wanted him away from me. God, how I wished he wouldn't even come home.
A good life. A better home. A loving and married couple. As opposed to what? As opposed to my beautiful mother with a loving step father and gorgeous siblings? Maybe the beginning for them was hard; I know it was. I know they had very little money and the kids' presents on Christmas were even wrapped with re-used wrapping paper for Kieran I hear, so maybe they didn't get the newest craze that I did. But they were loved. They were cherished. Now money isn't even an issue that I can see. Their one bedroom apartment was left for a pretty, and roomy home. The kids are happy. My brother is in college, courtesy of them. They all feel loved and they all ARE loved. They don't have a single complaint about the way they were raised, other than that she was a bit over protective, probably a fear since losing me.
I realize that I hadn't had a good life. This hurts some because I've denied it my whole life, but it also hurts because I don't ever, ever, EVER want to hurt her feelings. I am scared to death to tell her life wasn't a piece of cake. I am scared to death to tell her that adoption was a mistake. That I long for her love like a small child, that I long for her to hold me and love me forever. I am scared to awaken her to what she would never want to hear. At the same tme, I want her to know ME. I want her to know MY life. What I've been through, just the same as I long to hear her story.
Monday, August 6, 2007
I wore my pink
"I'm not contagious, it's just cancer. Give me a hug," and I got so many hugs that I couldn't count. Hugs from children, parents, nurses and doctors. Seeing the kids brings me out of my pity party, which I love being out of. I cannot even imagine what it must be like for small children to endure this. It is so difficult for me; can you imagine small children? Scared of what is happening, not understanding it completely and afraid of the future? I am only 25, but I have experienced "growing up," I have experienced a first love, solid and loving friendships, and a reunion with my mother. These children have experienced at most, losing 2 front teeth and learning to play Nintendo Wii.
When I saw Briana, I felt straight from my heart, that I would give my life for hers. Truly, honestly and completely, I mean that. Briana is the most intelligent, fun-loving, compassionate and beautiful 16 year old I have ever seen. She has so much to offer this world. I would trade my "hopeful" diagnosis for her terminal diagnosis. But life doesn't work that way. Women will survive breast cancer, and some will die. Women will survive ovarian cancer and some will die. Children will beat Ewing's, leukemia and brain tumors and some will die. I can't make sense of why or how or who chooses who will and who won't become a survivor. Although as I told Briana, I admire her greatly. Her strength in the face of this inspires me. To be faced with death, hopeless for recovery, but to give her brilliant thoughts and ideas, to give her hugs and her undeniably heartfelt smile while facing death, is something to be admired. She amazes me. And if there is an after life, if there is truly a God, which I am doubting now, I wish I were Briana; because she is pure, beautiful and innocent. If there are truly gates of Heaven, they would open automatically and carry her into heaven. I am not like that. I have so many faults, so many wrong-doings. Heaven's gates would open very slowly and I'd have to answer to
many things, assuming of course there is a heaven. My faith is still dwindling. More now than ever.
Briana showed me some of her writings and gave me two of them. Last year in English, she wrote a paper about who she would like to be like when she grew up, and ironically it was me. I sobbed then, and I am crying again right now. She would like to be like me. To have such a beautiful and innoncent human being think of me so highly is is the biggest compliment I have ever received. Another paper is about cancer, death and acceptance. I now know that Briana knew she would die at her diagnosis, even though originally it was good. She knew that cancer would succumb her from the start, and she wrote with such grace and beauty about her acceptance of it, and why she thought she was in this world to begin with and to die so young. I will ask her permission to post these, because they touch the heart so very deeply.
When I left her today, I hugged her forever it seems. I was crying in this little girl's arms (aren't I supposed to be the strong one?) Why do these children and teenagers feel such peace and I find myself so sad or angry, or rageful? I look at this beautiful girl with dark brown hair and huge blue eyes, longer than long eyelashes, and a smile that would melt anybody.......and God? Maybe God? will take her from this life? Remove such beauty? Remove such promise? WHY? She gets it; why can't I?
After leaving Briana's I met Cameron at Starbucks (oh, yeah, I did say YES) and he was exactly what I needed. I have felt so much closer to Cameron since my mixed up feelings with my brother. To clarify: and yes, this is embarrassing; I felt as though I was falling in love with Kieran. Just the thought of him, seeing him, his smile, his voice, or even the phone ringing made my tummy get butterflies. We talked about this openly and we found some information regarding this; finding out that is is more normal than we thought. Once we talked, set boundaries and allowed ourselves to feel that love as brother and sister, I have been able to allow myself to love Cameron more. I told Cameron that I loved him. I did not stutter. And I meant it with all my heart. We have had a different relationship since......more open, more meaningful, and of course, planning for our future. Cameron is not just "some guy," it took me a long, long, time to even accept a date. I didn't trust him. It took me a long, long time to even call myself his girlfriend. And it took me, as he would say: "forever to kiss him." I enjoy kissing him now. I enjoy being in his arms. I can see myself beating cancer and retiring in rocking chairs with this man. I was so stupid to ever think about letting him go. Fortunately he is patient!
At Starbucks with a mocha on ice, we just sat there talking. I talked about the kids at Children's, I talked about Briana. I cried. He cried. In public! He told me that he hoped I would fight and fight hard, but if and when I ever decided to give up, he would not oppose my decision. It meant so much to me. He did express that he wanted to be my husband in either scenario and I honestly can imagine laying in bed with him until "death do us part," for the first time since I meant him. He knows me. He knows my heart and he knows my soul. He supports me in my fight, he supports me if I give up. He supports me in my struggle with my adoptive parents, and he supports me with my reunion and all the feelings that comes with. Who gets so lucky? Why me?
I will end this post with a picture of me taken 11 days before my surgery and diagnosis. So much has changed. But I guess the reason I am posting this is to show that ovarian cancer can happen to anybody; young or old. It is mostly associated with the elderly because that is where it is most common. But I'm not elderly. I'm not unusual. Take care of yourself. See your doctor when something isn't right or is unusual for you. Don't take a single moment for granted. Keep in mind, I am very different today. I am 35-40 lbs less, with little to no hair; for those "new friends" I may meet sometime......