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Another 'chemo Christmas' and a 'same old/same old' New Year'c celebration. :(

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

After a glorious 5-month remission where I actually felt GOOD and had hair and eyebrows and a LIFE, my cancer has recurred and I am back in chemo. It's hard enough to know that now my cancer is considered uncurable and my treatment 'palliative'. But having it happen at Christmas makes it particularly hurtful a blow.

Christmas 2008 was the hardest period of my initial treatment protocol, isolated from my grandchildren because my immunity was so compromised, no Christmas parties or pageants at church or school, no shopping trips to the mall, no making gingerbread houses, .. instead needle sticks and long days at the clinic. And Christmas 2009 looks to be the same. I guess I'm in a self-Pity Party funk today. I need to be getting dressed to leave for my weekly chemo infusion, but am putting it off because my new port is so sore and I know how painful it will be to wiggle out of this robe.

I've been so very blessed in my life. I keep reminding myself of the decades of perfect health I enjoyed before cancer caught me. I see the pain in my family's eyes, and I know it is reflective of the love I have been so blessed to receive in such abundance. But I hate being the cause of their pain and tears. I can see the defeat in my poor husband's eyes, spending his days carting me back and forth to the doctor's and sitting there witnessing the multiple indignities and assaults on my poor body. The exhausting routine has gotten 'old' I'm sure and I know that he already mourns the losing the rowdy fun strong sexy woman he married, replaced by this haunted scarred old woman.

Wow. I really AM in a Pity Party! Yikes. The photo I use now was taken in October (just 2 months ago!) on our wonderful "Remission Celebration" trip to Greece, Turkey and Italy. We thought I was cured; I was my old self again, able to hike up hundreds of steps to monastaries and archeological ruins with ease. You can see how blessed I am, to be financially and physically able to do this just 2 months ago. Maybe I can get back into remission again and steal little chunks of the good life between treatment regimes! Okay. I've vented. I'm given myself a pep talk. I better go get dressed for chemo.

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

I would refuse to beleive your cancer is un-curable, dont' beleive it! About being in a self pity party funk, I love the words you chose. No doubt, I would feel that way to. First of all I am thankful we can get on this board to release the things we are feeling on our heart, and not to our family. Sometimes family feels burden not having the words to say to comfort. So, I am thankful to God for this site. I know when I am down, everything about me is negative, in fact I dont' want to be positive, I want to hate whats happeining to me. You have every right to hate that cancer has returned, I hate it!!!!! Its crappy, its lousy, the list goes on and on. It is very important for your health to release your anger and sadness. Spit it out! Emotions and feelings. God made our bodies to have emotions, so we can feel good, feel happiness because then we are able to express it in words.Its awesome to feel excited, peaceful comfy. I know we dont' like feeling sad and down and negative, but again, its emotions God made us to have, so we can put them into words and express them. Emotions and feelings come and go for the rest of our lives. When its good, enjoy the moment, cause thats all it is, when its bad, hate it, its only a moment.

You are wrong about your husband and your body. Your husband isn't in defeat and your still a beautiful sexy woman with or without hair, with or without cancer, your not the cause of pain or tears in your family, you taught them how to love deeper, appreciate a person and not take them for granite, beauty is not on the outside (like the world promotes), you taught them to see beauty within, you are bringing them closer to God, you are teaching them to give more. Its written when someone gives they receive back a hundred fold, you are making their lives richer. So, step back and see what you are giving and doing for your family. Thank God for doctors honestly dont' know where I would be without them. However, doctors didnt' write the bible, God did, doctors are limited, God isn't, doctors dont' know what will happen for you tomorow, God does, they dont' know your heart and thoughts, God does. They can't heal, God can and does. There is nothing to hard for our God, so hell with cancer being uncurable. You will climb this mountain just like you did in Italy, so get your boots on!

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I was my husband's caregiver for six years before he died in Oct. No one expected him to live as long as he did. He looked on his treatments as buying time. When he felt well enough, we made memories with family and friends. During that time we had a new grandchild, took our two older grandchildren on vacation with us 3 times, and visited with family and friends. He and I went to Hawaii after his 2nd recurrence. We put the trip together in a week. We laughed a lot and cried together. Yes, watching his body deteriorate was tough. Seeing him in pain was painful for me, too. My husband's greatest concern was leaving me behind. He used to tell me he was sorry he was putting me through this, and I told him he wasn't doing it the cancer was. I have to tell you though, that taking care of him was truly a labor of love. We had a wonderful marriage and we drew even closer during those six years. He became my hero. I admired his bravery. I miss him a great deal. Life is often not what we want or expect. Life's not even fair. We were supposed to grow old together. I am glad I was here with him. Every day was a gift. Often those days were not easy but they were a gift. Palliative care can last a long time, sometimes years.

Believe it or not some of our good times during the six years were in the chemo lab. Ours was large with several nurses. My husband often slept for part of the time and I read. Yet we got to know all the nurses and many of the other patients. I even saw some people I hadn't seen in some time. Many of us shared our stories. We laughed as well as cried. Every caregiver I met felt much the same way I did. We wanted to be with our loved one. We could hate the disease, but we never blamed the loved one.

Now is when Christmas is hard. When he was here and hurting, at least he was here. Now I am alone. Caregiving is hard, but that means our loved one is still here. You do sound blessed as I am with good family and friends. You are really and truly loved. Buy time; make memories. I told my husband that if he was an sob, we wouldn't care. I'm sure your family feels the same. Even if I had known I was going to face this heartache toward the end of his life, I still would have married him. The years we had together were worth it. I'm sure your husband feels the same. Fay

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Linda, your Self-Pity Manifesto does not sound so much like one as a well-written letter to family, friends and everyone to whom it may concern about how cancer pronouncements and treatments through these particular holidays can have such a dramatically negative impact on us and those who care about us most.

It also reads as a love letter to the people you care most about.

I am sorry to hear that they are bandying the words 'incurable' and especially 'palliative' about, Linda, as you and I both know what they generally mean, if we are not kidding ourselves, and it is clear that you are not. All I can say in that regard is that in many cases I read about today, people who are 'incurable' are also becoming 'manageable', or 'in maintenance' rather than palliative care.

There is always hope, Linda, there is always, as you know, humor.

In the meantime, celebrate as best you can given the circumstances this opportunity to once again spend time with those you love most (and even some not so well-loved, should they sneak through the door somehow :)).

I wish you the very best, including a wonderful Christmas and a hopeful New Year.

Take care,

Joe

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi Linda. I am sorry as I am a bit late on responding here but I was out of town helping a friend. I agree with everything Joe said. There is always a chance at maintenance therapy and I have two other friends doing it now. You did such a great job of getting the most out of each day that you were blessed with and I am sorry that your back in the chemo grind. And your not having a pity party. I think we all feel a bit bad about the toll cancer takes on our families. But at the end of the day you are loved and respected by your family and friends and that is pretty hard to beat. Your husband will go the distance because that is what a great spouse should do. I think we all deserve better from life but things are just the way they are. I hope for the best for you and your family. Bless you Slickwilly

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