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Still fighting the battle Still fighting the battle

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  #1  
Unread 10-26-2009, 02:36 PM
Still fighting the battle

It's been a while since I've logged on. For those that remember me, I have ovarian cancer, have had all the chemos and radiations I could have along with surgeries. I have a permanent colostomy (poop bag) and permanent Foley catheter (to pee).

I had started Avastin with a daily chemo pill (cyclophosphamide) last January and had to stop in April 09 in order to have emergency surgery to have my colostomy fixed as it had stopped working and I was pooping from my vagina due to a fistula (another problem).

Since April 09 every thing has been down hill - I thought things would get better but it seems that I always have to climb hills along my journey. The surgery was in May, it was hard physically. And it seemed I never recovered properly ...soon after (one week!) I had to have another emergency surgery to have a 15 inch stent installed in my right kidney as it had burst due to pressure from a tumour. Had a long time recovering from that too! I weighed about 97 pounds at that point.

About two weeks after that I had more pains than usual in my pelvis - went to emergency where I was admitted. This time is was a pelvic absess... they told me it couldn't be drained due to my weak condition and the fact that my abdomen and pelvis are described by surgeons as "frozen" -my colorectal surgeon told me 'it's a mess down there -no more surgeries!"

So I was on very strong antibiotics for 2 weeks that made me vomit all day, had no appetite, etc.. that didn't help me at all.

I tried very hard to take the summer to heal, replenish my body and soul. But in September I had to have my right kidney stent replaced (it's done every 3 months) and I had to have one installed in my left kidney too as another tumour was wrapping itself around my left kidney. It's been very hard .... I'm lucky to have a loving husband who has been my support system and my caretaker.

I had an MRI in late July that showed that the tumours were growing and have spread throughout my abdomen and pelvis so the vacation was over.
I'm lucky it hasn't gone to any other major organ all this time.

I just started the Avastin and daily chemo regime again about 3 weeks ago. But this time I have the Avastin infused every 3 weeks instead of 2 weeks as my oncologist feels I'm too weak to take all this. I have to have the Avastin infused at a private clinic as it is not approved for ovarian cancer. But this is all I have left ... except for the alternative.

I'm surprised as to how my body has deteriorated since last year. I'm having difficulty with this chemo regime this time. I'm constantly hugging the toilet bowl vomitng my guts out, even with the anti-nausea/vomit meds. I'm so tired, there are days I don't even feel like getting up to shower. I'm hoping it will get a bit better overr time. I take many pain meds for pain and that, along with the chemo, causes constipation. I thought I was on top of that but lately it seems nothing's working. I take a mild laxative daily (can't take anything stronger as my bowels are fragile) but it hasn't done anything to help and the pains get worse...it's a terrible cycle that never seems to end.

So that's where I'm at .... in pain, trying an experimental drug and feeling like crap (hope I can say that!). I try to be strong, positive, etc.. but after all these years it's becoming tiring and depressing. Every one reminds me how lucky I am to be alive ...and I know I should be, but there are days when I look at my poop and pee bags and feel like just wishing that I'd have died from this cancer. I know I'll get over the feeling and things will seem better on days that my pain is better managed and I get some energy back but there is always that little idea in my mind that says I wish I could be back to my 'before cancer' person, both physically and mentally.

I know my husband loves me, cares for me and I'm lucky to have him but I often think of the kind of life we both have now because of this cancer. We have to be honest here, I no longer am the same woman he fell in love with. I know vows are said at the time of your wedding but let's be realistic in this day and age .... sex for me is a thing of the past. I've gotten some counselling where I was told that there are 'other' ways of being intimate, my husband reassures me he doesn't 'need' the sex, I can wear a pretty camisole and hide my colostomy bag, etc... but deep down in my heart I wonder if all this is true. He is only human after all and a man. Lots of temptations out there .... I do trust him but why should he have to choose this kind of life?

It feels good to just sit here (in pain) and write about this - I mention it to him sometimes (the sex stuff) and he poo-ppos it all away, giving me a kiss and telling me he'll always love me no matter what.

Enough about this ... it's glad to be back.
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  #2  
Unread 10-26-2009, 03:06 PM
Re: Still fighting the battle

(((Maxime)))

First of all - it is SO GOOD to hear from you! I have been wondering and worrying about you lately.

I am so sorry that the pain and discomfort have not been relieved.

I am on Avastin too - as a single agent treatment. That drug has only given me headaches, and some abdominal discomfort. I'm sorry you are suffering from nausea and constipation. I know how hard those side effects can be.

Your husband is a gem - take what he says as truth, and don't second guess his decisions to be with you and stand by your side. That man loves you - and he wants to be right where he is.

I hope that this treatment can shrink the tumors and give you some quality of life. Take care Maxime - sending energy and healing light your way!

  #3  
Unread 10-26-2009, 03:17 PM
Re: Still fighting the battle

I haven't logged on in longer than I can remember, and here you are! When I read posts from you and other OVCA women, I get angry about WHY there isn't a screening test, WHY there isn't a cure? And for every second of pain and loss you suffer, I hate that for you and for the others.

You are reviewing your life, where you are now. You are thinking. What's good is that you are sharing with us. No one shares these parts of life very much. Remember Margaret (Ellen)321 who had OVCA and journaled all her years with it. Like you, she made it real and showed how she still had enjoyable parts of life mixed in with the bad. I hate you have to be one who is so unfairly tortured by a disease like this. I don't know what to say, except that I'm glad you are sharing your experience. I know you are weary of all this.

Your husband sounds like the perfect companion for all these times you have been through together. Sometimes it helps to just check your mind and body out of reality and go to a place of comfort and happines in your mind. All those videos of your mind, of your life. Just lie down and go there and forget for a while. I hope you'll ask your doctors how they can help you better to get through this.

I wish you love, a soft cat or pup by your side, dreams of lounging on a warm beach on a soft blanket with only the sounds of seagulls and waves lapping at the sand.

Keep talking to us here. You can't go wrong with us!
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  #4  
Unread 10-26-2009, 03:31 PM
Re: Still fighting the battle

Hi Maxime. I don't know you, but after reading your post I just wanted to say I care. You have gone through so much yet here you are living your life. Not the way you had planned to live it, but you are fighting the fight. Thank you for sharing your story. May God bless you and your husband.
Emily
  #5  
Unread 10-26-2009, 03:33 PM
Re: Still fighting the battle

Maxime,
You dear soul. I have nothing to complain about after reading your story. I would just like to say that no one has the right to tell you how you feel lucky when you feel like you do. Most women on the site know about pain and suffering so at least there is a respect for that! May I ask how you are able to provide your body the nutrients it needs? With being so sick, it must be difficult. I'd like to share my protein shake recipe with you-it's filling and soothing and easy on the stomach:
Cup or so of milk
1 banana
Handful of frozen strawberries
1 scoop of Proteins Plus powder
Tablespoon of Udos oil

Blend until smooth and drink with straw!
I live in Canada as well and you can get Proteins Plus and Udos oil at Zehrs grocery store or most health food stores

If you were to gain weight and strength, could they operate to ease some of your current problems?
God Bless you and keep us posted-we'll be watching out for you.
X0
  #6  
Unread 10-26-2009, 03:47 PM
Re: Still fighting the battle

You my dear are at the top of the prayer list tonight....how one little person can endure what you have is truly a testament to how we are made and how strong our will to just survive is. Hugs XXXXXOOOO
  #7  
Unread 10-26-2009, 04:50 PM
Re: Still fighting the battle

I have been thinking a lot of you since I read your earlier posts. I was so glad to see you posted today!
Thank you for sharing your story with us - it brought tears to my eyes, and it makes me wonder too about how strong you are in your will to survive. I admire you. And I am so glad for you that you have such a wonderful husband! Someone so courageous like you deserves a man like that.

I wish you lots of light and love.
  #8  
Unread 10-26-2009, 06:43 PM
Re: Still fighting the battle

(((Maxime)))
You remain dear to many sisters here so it was good to see your post. I'm so very sorry the pain remains as well as the continued trials. I also think you need to listen to your husband accepting that he loves you deeply and wants to be with and support you; I think he knows you would do the same for him had the cards been reversed. I'm sending positive thoughts your way and continue to keep you both in prayer.
gentle s
  #9  
Unread 10-26-2009, 07:42 PM
Re: Still fighting the battle

Maxime,

It's good to see your post but I'm so sorry that you are still having such a tough time.
I have to echo the thoughts of the others about your husband, he sounds like a wonderful man who chose an equally wonderful woman to spend his life with. You are both in my prayers.

Jean
  #10  
Unread 10-26-2009, 07:53 PM
Re: Still fighting the battle

Maxime, I will pray for you and your husband. You are stronger than I could ever be, you humble me. Sending you a Big Hug!
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