Wednesday, 20 February 2008

The Latest News After Visiting my Oncologist...

Edited to add: Apparantly I got it wrong it's not 8 -9 months Mum reminded me that it's actually 6 -7 months. I kind of wish she hadn't!

Hi friends, well I have been to see my Oncologist to get the results of my CT Scan and also to find out the plan of action. The news is not good. I am feeling just numb again, I don't really know how to put this so that it flows nicely but I guess at this point who really cares. It is the words that matter not how they are written. The news is that I have a very large tumor in my pelvis which already knew, I also have cancer in the lymph nodes in the back section of my abdomen, which I did not know about so that is bad news. I also have 'shadows' on my lungs but I have had these for several years and they haven't changed so possibly no danger there but not certain.

My Mum came with me to the appointment which I am glad of because it is very difficult to explain to someone what is said, especially when it is bad news and they don't want to believe it, I think she likes to think that I got something wrong or misheard something. Today she heard it all from the Oncologist and I think she wished she hadn't. In terms of fighting it, well we are just trying to buy me some time which we knew, I start chemo at the start of next week. The best proposition for me is a drug called Avastin which I have had before when it was at trial stage, however, now it is past trial stage but not yet passed by the PBS as our standards are extremely high over here in Australia. So it is available but we have to pay through the nose for it. It is approximately $3000 a pop and I need $25,000 dollars worth for it to have the desired effect! There is absolutely no way I could fund this, I asked my Oncologist 'so if all the drugs were free which one would you administer to me for the best results' no doubt about it the Avastin. So Mum says we will have it, of course we will have it, no doubt about it, absolutely, definitely, we will have that drug, no matter what! I wanted to make very clear to my Mum that even by me having the Avastin it cannot save my life it can merely extend the time I have left and even that is only a possibility. She understood that and still wants me to have that drug no matter what. So I am a very lucky woman in that sense, I have a Mother that can afford to pay for me to have the best chemo available at the moment for me to have. You know if I lived in the States or England, or Scotland I would be entitled to Avastin free but not in Australia because we are so strict on what goes through, it will become available eventually but I don't have the time to wait. So the time frame my oncologist is talking about is anywhere from 8 to 9 months, or possibly, if I take to the Avastin well maybe 2 to 3 years. I will be having Avastin and Xeloda which is another form of chemo which the Avastin works better in combination with and another type of chemo which I have forgotten the name of. I will also be losing my hair quite quickly. You know 3 years doesn't even sound long enough to me, Jack will only be 9!! What The !!!! It is also possible that the drugs will not work so great on me, I have had them before and apparently when you have them the 2nd time around they don't work as well. So 8 or 9 months doesn't even take me up to Christmas time! I actually can't believe I am typing these words, however it is the truth. I asked him what was making me so puffy and blown up and he told me it's stress pure and simple, there is nothing else that I am taking that would cause it.

Anyway whilst it is not good news I am so very touched that my Mum is wants to pay for me to have the best treatment available, at the same time I feel kind of yuk about it too. You know she could use that money for other things and it is not going to save me long term so I don't know, I just don't know... I am going to find the best naturopath available and do everything else I can to fight back at this disease. There are people that I want to talk to that have had very severe cancer diagnoses and have fought back and beaten it, I need to speak to them and find out how they did it and what their mind set was and their diet etc, everything that I can find out from them I will, I will be hanging off their words.

Now to the pain, he drew me a picture to show me where the tumor is sitting and it is sitting right against my spine, so it goes spine, tumor, and then I think bowel next, although I am not sure that I remember correctly but I think that's the order it goes in, I am positive about the spine and he said that is why it is so painful as the tumor is pushing against the nerves ouch! which is why it is so damn sore, to think I've had that pain for approximately 2 months, that means that tumor has been growing their for at least 2 months - not good.

Anyway my dear friends, please keep your prayers and good wishes coming to me as I really need them now and so do Jack and Jamie, if I die in 7 or 8 months it gives me so little time to get organized and do the things I want to do with them, I am trying to think positive and say that I will make it to 3 years but I am a realist too so I have to consider that it may happen the other way, I will try and get everything done just in case. Take care my special, dear, friends from the blogging community, I appreciate every word you write for me and send to me, I will keep you informed. I know I am not going to be feeling too good once I start the chemo but to be honest I haven't been feeling so great lately anyway due to extreme fatigue and pain. Still, I will be keeping up my blog as it gives me such comfort hearing from you all. Bye for now xxx

Oh yes and for those of you that started reading this blog for the scrapbooking know that I will be back into that with a vengeance as I am going to make a beautiful album of memories for each of my sons. I think that they will appreciate it one day, I want to write about things they did when they were little, I may even do one about me if I have time as children love hearing about their Mothers. I will show pictures on the blog as I create pages.

30 comments:

  1. Dear Jen, I have waited up just in case you posted. I am so sorry that the news was not good. I feel you are so blessed to have a Mom who loves you and wants the best for you and is able to get it for you. She loves you and she must do what she can do just as you would for your sons. I know you are a fighter. Maybe tired but a fighter still. We shall pray all the harder. I am so glad you didn't have to go alone to the Dr. Thank you for posting. I know you must be so tired. Good night my dear girl. debi

    ReplyDelete
  2. Jen,

    I'm saddened beyond words to read this post. But I hope you continue to write with such fierce and painful honesty. I'm simply in awe of you. I will continue to hold you in my heart as you begin chemo.

    I recently wrote a story for work that included info from Genentech, the company that produces Avastin. (Genentech is also 5 miles from my house). I went to their website to get some company background info, and saw that you can apply for financial help for several of their drugs. It may be worth your while to check it out.

    Much love to you, friend.

    Jill

    ReplyDelete
  3. Jen,
    Oh, I was hoping for better news for you - is there anything they can do for the pain that won't have terrible side effects?
    I think that the Avastin and other drug in combination have terrific possibility so that's positive news and encouraging.

    I understand the feeling of not wanting to accept your mom's financial help. My folks gave me a large amount of money and I balked about it initially. Then, my mom said, "it's really the only thing I want to do with my money - to help you more so than any car or house or anything" and now as a parent, I totally understand what she meant. Just like you do and would do anything for your boys, she feels the same way!

    Thank you for your last post w/the pics of your bag. You are one brave girl and I admire you immensely! Great before pics... love the lingerie but never had the guts to wear it myself.

    Thanks too for the update - sending you prayers, love and healing thoughts...
    Cate

    ReplyDelete
  4. I have been checking in during the day to hear how you went. I am glad your mum was with you. It not what you wanted to hear, but now you know what you are working against. It is understandable that your mother wants to do this for you - she doesn't want to lose her child any more than you want your children want to lose you. Take each day as it comes. Keeping you in my prayers.
    Hugs
    karen x

    ReplyDelete
  5. You have been on my mine all day to day (well actually every day)and I am so glad your mum was with you to hear such awful news. It is so far beyond my comphrension what and how you must be feeling. My words seem so inane, inadequate etc ...but know that i am sending out to you all the positive thoughts I can, to help you.

    Your friend Leeanne x0x0x0x00

    ReplyDelete
  6. Dear Debi, thank you for your sweet comments, I am very blessed to have my Mum want to pay for my treatment and be able to afford to pay for my treatment although it will take some juggling and yes I am a fighter but very tired!

    Dear Jill, thanks again, I will check out their website too, I know that Avastin is free in most countries but not Australia so maybe they will help thanks very much for the tip and thanks for your kindness and support, I so appreciate it. Jen xx

    Dear Cate in Cal, yes they are reasonably confident they can help the pain without to many side effects. I am working with a wonderful pain management specialist and it is going to be a bit of trial and error for a while until we get it right. Thank you to for your support. xx

    Dear Karen you're a champion, thanks for supporting me along my journey, it means so much, take care Jen xx

    Dear Leeanne, your words are kind and helpful believe it or not, when you all write to me it lifts my spirits immensley so don't feel worried that you don't say the right thing because just the fact that you care enough to drop by is fantastic, so thank you and take care Jen xxx

    ReplyDelete
  7. Oh Jen.
    So the fight begins for you dear brave one.
    You can do this. You are so strong and yesterday's news was not what you were hoping for, but now you can hope for something else...and time is worth fighting for.
    And as far as the hair goes....you are beautiful no matter what. We don't see your hair...all we see is your beautiful heart.

    The prayers are getting longer and more wordy and are still being sent your way !

    ReplyDelete
  8. Giving you the three year cheer!!! heck let's go for 7!

    ReplyDelete
  9. Jen-
    I am so glad your mom was with you and that she made the decision she did. And I am proud of you for accepting the help.
    I am so saddened by this news.
    I am holding you by the hand.
    I am praying for miracles.
    I am so grateful for every day that you are my friend.
    sending love your way-
    xo
    m

    ReplyDelete
  10. Dear Jen:
    I'm so happy you had the support of your mom when you went to the doctors. Please accept her help. You know you wouldn't take NO if it were your sons. It's the only way she feels she can help you right now. Think how fortunate you are to have that financial help right now. And hey, we need you! Much prayers and postive thoughts are coming your way for your family, doctors, friends and you. And thank you again for letting us into your world and sharing. You've opened so many eyes....
    hugs to you...laura

    ReplyDelete
  11. As a mum of a little one of a similar age to your little one, I wish I could do more for you than just write these words, I am thinking of you though and hoping that the chemo can do everything possible that it can.

    I really look forward to seeing some of your scrapbooking pages, what a wonderful idea!

    ReplyDelete
  12. We all know we're mortal, but to face it, that's a whole different story and to face it when your child is young and you are too, that's beyond hard.

    Could the edema be from the blocked lymph nodes? I think there are some people who know how to massage lymph nodes to ease the swelling.

    Take care and I'm sending a hug.

    ReplyDelete
  13. Stay strong, you are an admirable person with a gift into creativity. I really look forward to seeing some of your scrapbooking pages, what a wonderful idea and gift for your adorable sons!

    ReplyDelete
  14. Dear Jen,

    I also was so glad to read that your mum was with you...that you were not alone. Please know that I am checking in often to see how you are doing and thinking of you often...
    Sending you hugs...
    Annie

    ReplyDelete
  15. Dearest Jen - I am saddest that your days are fraught with so much pain and stress. It doesn't seem fair or right that you should have to go through so much to get to the other side. I want so much for you to have a peaceful, lovely time with your son and the rest of your family and friends. I will keep you in my prayers.

    ReplyDelete
  16. Hi Jen, I've been checking your blog to see how things are going, and I am so sorry to hear that they are not going so well. You are doing everything right, though, and keep fighting as best you can and also hold your children and friends and family close to you. It's not fair, but know that we are all thinking of you and sending you much love.
    Daphne

    ReplyDelete
  17. Hi Jen, I just wnat you to know that you are being prayed for over here in the states. My mom has metastized breast cancer and she was on Avastin in a trial for a year. It cuts off the blood flow to the tumors and it worked on her for a year. It has sinced stopped working, and she is on chemo again. But I know it has given her more time with her only grandchild. So don't give up hope, it can work and give you more time to enjoy with your sons.

    ReplyDelete
  18. Oh Jen, wow. I am so sorry to read this latest news. No words, just love.

    ReplyDelete
  19. Jen,
    Fingers crossed, sending you all my positive thoughts.

    Janet

    ReplyDelete
  20. (pained) Jen! Oh honey, I don't have words. I'm so very sorry that you have to go through all of this. I'm heartbroken over it. Thank heaven your mother was there to hear the news with you. You need help and care and she can get both for you.
    Thank you for posting this. Your honesty and bravery are amazing.You are a true blogging hero.

    ReplyDelete
  21. I am saying daily service for you Jen. It is the only mountain I can move and I am moving it, starting right now.

    ReplyDelete
  22. What a courageous story you tell!
    I was led to your site by Jennifer at The Word Cellar, and I am grateful. My prayer will be for complete healing for you.

    ReplyDelete
  23. How precious those scrapbooks and the love and life you will capture therein will be for your sons.

    Blessings on you.

    ReplyDelete
  24. I am new here -- and not sure how I found you...

    I just wanted to jump out of the shadows and let you know that you have one more person on your cheerleading squad. You have a beautiful stance on this. My heart is breaking for you and for your little boy.

    ReplyDelete
  25. Dear Jen,
    You are being prayed for as I write this. I am also saddened with the news from the doctors, however, you must still fight and research more, maybe seek another opinion about treatment. Never, ever give up hope. Where there is life, there is hope, and you are such a beautiful soul that can continue to give it your all. I was away from my computer for a few days, but you have been on my mind constantly. I am placing my arms through your computer screen and giving you a big and strong hug. I will continue to pray as I know you will continue to fight this beast. Love to you dear, Rosemary

    ReplyDelete
  26. Jen - my thoughts and prayers are with you.
    Although I've only been reading for about a month, I think of you often throughout the day.
    Please consider a 'donate' button. I know it won't..actually, I don't know. It could help offset the costs of the chemo or it could just be enough for you to occasionally treat yourself.
    You are so strong, so honest and that is beyond valuable to anyone who reads.
    ..sending much good energy.

    ReplyDelete
  27. I'm praying hard sweet friend.

    Remember...stay positive!

    Hugs!
    Kat

    ReplyDelete
  28. Jen,

    You don't know me from a bar of soap, and I don't know you from a bar of.... blog, I guess. I can't remember how I found your blog, but I found it a few days ago and hoped you would hear something positive at your appointment. I'm very sorry that wasn't the case, and I'm hoping that whatever drug protocol path you take gives you some time or relief.

    I understand you live in Melbourne? I do as well, and though you don't know me, if there's anything you might need, I would be more than happy to help.

    I don't really know what else to say, but I felt the need to say that, I guess.

    ReplyDelete