gaile's Cancer Blog
October 5, 2008
| We're not done yet! | Views: 576 |
Well, my CEA (tumor marker) stayed around 3300 all through the 4 treatments of Taxotere I just completed. Very upsetting. So I had a PET scan last week, to see what was really going on. Also very upsetting. My liver tumors are larger and more active. The center of them are now filled with necrotic tissue (dead). I have a lung tumor now that is very active, and a lymph node, both in my right lung. The tumor in my left pelvis is larger and more active, and also filled with necrosis. The tumor in my right pelvis is a little smaller, well whoop dee doo.
So tomorrow I will start back on carboplatin which I was on last Feb., and a new to me drug, Gemzar. I am already so tired I sleep all day. I went to Yosemite with my two best friends two weekends ago, and had a wonderful time. But I didn’t get to sleep all day and felt awful. The weather was perfect, the food delicious, our cabin was so cute, my friends made me laugh… a lot. We hiked a little, it was on paved paths, but uphill. My legs hurt so much. It is the most I have done in ages. My friend Kristi brought a big silver pail that she had decorated on the outside. It said “Bucket Buddies” and had flowers painted on it. It was filled with bottles of wine, snacks, and treats, three personalized wine glasses, and pretty tissue paper. We are going to refill it and bring it on each of our adventures as we check off my Bucket List. Our next trip will be to the coast, perhaps Monterey or Bodega Bay, and then maybe Napa or Calistoga Hot Springs. Las Vegas is our big trip. I have to be feeling pretty good for that one, so we will go when the time is right.
Knowing you are dying is so weird. I still can’t believe it’s true. Some days I wake up and for a split second think it might have been a dream. I look at myself and my stuff that I have collected throughout my life. I wonder what will happen to the things that I treasure, as few of them mean much to anyone else. I look at the new work clothes I bought right before I was diagnosed. Silk blouses and wool suits and jackets… that I never got to wear. It is all so surreal. This house is mine, even though 4 of us have lived here for 13 years. I have decorated every room, bought every stick of furniture, every picture and mirror on the wall, all of the antiques that I scoured Portland and Seattle and London for.
I have boxes and boxes of family photos from relatives in the last century to my kids growing up. My grandmother’s quilts are bundled up, and I know the stories that go with many of the fabrics. I have 4 sets of china from different long gone relatives, and their crystal and some of their silver. So much, that I was the caretaker of, the story holder. I have shared the information with my 19 year old daughter. My husband isn’t interested, nor my 21 year old son. My daughter cares, but she is too young to be passionate about it. So I wonder, what will happen to these things.
I guess it won’t matter after I am gone, so I should stop thinking about it. I did give our family bible, with a list of births and deaths in it reaching back to the early 1800’s, to my niece. I am sure she will treasure it and pass it on. I just never thought I would be thinking about these things in my 50’s. I thought I would be a few decades older. Now I am on disability, which is a third of what my salary was. I expected to retire with a good income as I was investing so much. Now things will be changing. I was spending money on trips and my kids while I was still getting paychecks as I thought I would die soon and I should enjoy myself rather than sequester myself at home and wait to die. But I have outlived my paychecks. I’m not complaining, but along with that extra time comes more medical bills. So I will try to spend more conservatively. Although my biggest hope is to be well enough to visit my son Bryan in Tokyo in February when his school break starts.
I don’t recognize myself in the mirror anymore. Who is this person? What happened to the career by which I defined myself? I had just finished my second graduate degree when I got sick and was considering going for my PhD. That was who I was. Now I don’t know who I am. My relationships have changed. This Thanksgiving will mark two years that I haven’t worked. I still focus on my kids, and being a mom is a huge part of me. But my son is so far away. I am glad my daughter is at home, but selfishly. I also do what I can to care for my elderly parents. That is important, and part of who I am.
So I do have things, but my friends talk about work a lot and I feel so envious, and out of the loop. I am trying to be happy with the time I have left. I resent it when I see commercials where cancer survivors say, “I am thankful for every day”. I wish I could sincerely feel that way, but I don’t.
So, on to the next try at destroying some of the evil that lurks within. Hopefully this next chemo will slow down the growth and give me yet more time. I am at 22 months since diagnosis, 4 months beyond my 18 month prognosis. When I say that, it sounds like a TV show to me, and not like it is part of my reality. Wish me luck and say a little prayer, so far, so good… I am still here.
Thanks for your support -
Dear Gaile,
I don’t know what to say. This post has moved me so deeply. I am in awe of your honesty and your ability to face your reality head on. I truly hope that the new drug works well for you and allows you to enjoy your days more. My prayer for you is that you get to really enjoy every day of your life. It’s so great that you had a good trip to Yosemite! That’s a good start.
Peace,
Kathy
Gaile,
I cannot imagine what you’re going through right now. And to make matters worse, you don’t have the support from the one person who should be by your side through everything… your husband. I am sad for you, but also happy that it seems that you have fantastic friends and family helping you through this ordeal.
It is so wonderful that you’ve kept so many special keepsakes and photos of your life and your family’s history. There will be a time when they will appreciate this! I never used to want to watch old movies of my mother’s when she was growing up… but now these movies are priceless.
I hope your next chemo cocktail works better. I’m sorry you’re going through this. No one deserves this – especially someone like you. Take care.
Kelly
WoW,,,, how can anyone not read this and be touched… I really envy you for the strenght that you have in coming to terms with the end
It is not easy for a person to admint that they may be soon to there end,, but even at that you have not given up and are still helping other,,, like your parents.. Love goes so very deep within you ,,
Thought that i would comment a bit as i have also recieved notice that my time is short,, but just how short no one knows for sure,,and i am determined to do what ever i can…
So God bless and keep you in a special way for you are an exceptional person
Dear Gaile: my heart goes out to you as you face the challenges ahead. You are facing them in a very matter of fact way which is how I would feel. My hat’s off to you. Thanks for taking the time to share your feelings, your hopes, your worries. All of these posts will help someone in some way and yours always touch me. In time, I hope your son will cherish his family history along with your daughter and other members of your family. He’s young—-he’s probably got a marriage and family ahead——lots of drama that will help him mature through the years.
And what great friends! How wonderful that they are your bucket buddies and have the courage and strength that can help you have the best quality of life every day. Nothing’s better than laughter!
Keep us posted on your next treatment and your next big “adventure” in the USA.I’ll be thinking of you.
Gaile,
I was reading all of your posts this past weekend and I was so amazed how strong and positive you have been with this whole ordeal. You have this humorous and strong attitude, that inspires me a lot.
What you have said in this post is very touching. It made me cry. You sound so calm to describe your acceptance yet I feel your sadness, too. I really don’t know what to say, but I know you will be in my daily thoughts and prayers. I am glad you are enoying your life to the fullest with friends and family. That’s what life is all about, joy. You have great and solid friends and family.
Hugs and Prayers,
Yuyu
Gaile – I am sorry to hear about your test results. I think I am in denial today and don’t know what to say. I like to believe that nobody dies of cancer, but I am so wrong. Anyway, I just wanted to let you know I am thinking of you and sending lots of love your way.
Greetings, my wandering friend.
I can picture you and your friends, laughing like school girls, being silly just for the sake of silliness. What a wonderful time for all of you.
You are becoming more and more vibrant in your posts. The body may be weak but the spirit is able. Each of us will reach a point where our bodies will stop and we, alone, will know if we have lived or just logged time.
Your memories are your true treasures. Knowing about each quilt. Remembering who gave you the silver and why. Seeing the furniture, not as wood and nails but rather as time in Seattle or Portland or London. Your stuff can be scattered to the winds, but your memories last.
I pray for you daily and think of you with great fondness.
Blessing to you
Mac
When I first found this web site your picture was one of the first that I saw. You were bald and had a hugh smile. Your blogs were strong and powerful. Your photo gave me strength to accept my own fate of chemo and change. I ache for you and want to be a friend to you. You present yourself as strong and accepting. I wonder if your tears flow as you type. I mean it with complete sincerity when I write to you “it was your picture that brought me strength to try to face my fate”. If my health follows yours I pray that I am as strong on the outside as you present yourself. Like you I do not share my blogs with my family. I wonder if you now feel differently. If you were my sister, aunt, cousin or friend and I was strong enough to hold you I would as I say to you … tell me the stories of these possessions. Tell me the story of your loves. Tell me what you believe and allow me; my dearest friend to record it on video or to write for you. You are one of the special women God has given this world to make so many others stronger.
I wish I could do for you as you have done for me.
Sincerely
Shelly.
Gaile—I am wondering if you could take one of the targeted drugs…example:Erbitux?
I am so sorry for what you are going through.
I know what you mean about memories and ‘things’...I have 2 son’s and my ‘things’ are not important to them like they are to me…oh well maybe they will find themselfves in someones arms that love them later (the things)...
Gaile,
You seem like a very strong willed person. You inspire me with that. keep taking life day by day, as what other people have said for me to do, for my mother. I will be praying for you. Never give up hope, live everyday as it was your last. Glad you have a great support system. Just by the post alone, my mom could definitly relate to you in a lot of ways. keep fighting! loves of love!
-Rachel
Hi Gaile,
I want you to know that you are in my prayers. I was doing that walking around looking at my personal belongings things 9 years ago. I must say that there are no words to describe that feeling. I have read your posts and some others and I hate cancer even more than ever! I relate to a lot of what you write and I feel like I know you. If it makes you feel better to know that your not alone in all of pain and suffering…. then feel better. I only wish that YOU had more hope. I know that those blank stares from your Onc is NOT helping you. I have fired three doc’s and left the care of the VA hospital because of those hopeless stares! Take care and I AM praying for you to pull through! D
Gaile,.
Just wondering how your doing. Thinking about you and praying for you. if you feel like responding do, if not I really do understand. I will still hold you in HOPE and prayers. ~Denita
Hey Gaile…
Well those results certainly did suck…I am so sorry.
You are definitely a strong woman…and I admire you for having the will and strength to go with your friends on your girl trips ( they ARE so much fun)and I hope that your trip to the coast is great as well.
All of the things you mentioned that we seem to define “who we are” by (career, education, material things) can be taken away from us at any time…and when faced with the reality of cancer…their importance seems to just fade away. All we have left is who we are…and from reading your posts…you are a lovely, brave, caring and strong woman…with a wonderful soul.I wish you continued strength, love and laughter.
Celeni
I’m sorry about your results, Gaile. Yet, as everyone else has pointed out, you’re such a strong person. I don’t have such meaningful belongings as you do, but after reading your entry, I figure I should sort them out anyway.
Do you really have a Bucket List? I’ve been thinking about doing my own at some point. I guess I will know when the time is right. I’m so happy that you’re going out and having fun though. That’s the way it should be. :)
I am just in tears. I will send you so much strength and love. May god bless you.
Gaile,
Hi there gaile. I know you might get sick of the “i’m so sorry” but really i am. My father just passed away, he had lung cancer. I won’t go into too much detail. His girlfriend/fiance is Celani, she has a blog for dad here. What can i say, i hate cancer, it’s changed my life, brought me faith,broken my heart, and destroyed so much. The more i look around, the more people i see who are fighting for their lives. You really are an inspiration with your honesty and your strength. I’ve never met stronger people than cancer patients. They gave my father about 18 months, he lived about 6. You might wonder what legacy you’ll leave behind. I know it will be a great one. I wish you truely the best and hang in there , dad always told me “son..it’s going to be ok. no matter what”, he was right. I hope everyday is pain free, and filled with love and happiness.
sincerly,
wesley hughston
Your post was moving, I wanted to reach out and hug you. Someone posted elsewhere on this blog about tomography which she said had eliminated some tumors in her lungs. Would that be a possibility for you? Apparently it’s not available everywhere, but it may be worth checking. Thinking of you,
Kerry
Hi, Gaile!
Just wanted to thank you for your comments on my posts. Your comments are always encouraging. I hope you’re doing well, we haven’t seen your own posting lately (no pressure). Hope thing are going well for you.
Hugs,
Yuyu
Gaile—I am praying hard for you..