Calling all TNs
Comments
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LJ - I pm'd you, but wanted to make sure you knew I sent some $$ on as well. You are an angel for setting this up!
Christina - I'm not religious, but very spiritual. We have a knowledge now that I truly feel transcends time and place. While leaving my life here scares me so much, I take comfort in knowing I have true sisters waiting for me on the other side. Corny, I know, lol.0 -
Suze, not corny at all.
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All of you are truly amazing women! I strive to live my life like many of you do. I just find myself so down much of the time and really need to follow the examples you all set. I have been very sad lately with all the sad news and also I have not been feeling well for awhile, sometimes I just wonder what it is all for. Why all of this suffering? It is times like this I wish I was more religious or spiritual. Not saying that I am not at all, just that I have no strong convictions one way or the other. Why can't life just be easy? Well, if not easy, why does it have to be so hard and sad? I don't think my philosphy class is helping me! it is just making me question more!
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Suze..not corny...I'm with you with the spiritual thing...but sometimes it is so hard..a year or so ago my husband and I were walking on the beach and it was raining and windy and the sun was out and it was a totally awesome experience for me...I still remember that moment..I felt so ALIVE..but then I read things on here and have a friend's daughter who has Stage 4 tn...she is only 25...and I just wonder freaking why...what do you do..close yourself out from all the bad things or just try to face reality..it so hard.
Some people call it building "character"...well..I think we all have enough "character" to last us a long time...
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Susan:
OMG, not corny at all. Thinking as you do, is what keeps us going. While I am still so fearful of "how" I am going to die, since my daughter's death, I am not "afraid" to die, as I know she will be there waiting for me. It was a pact we made when hospice started to come to our home, that should she pre-decease me (which was so enormously impossible for me to even grasp), that her face would be the very first and only face to appear to me at my moment of death. I want her hand to reach out for me, not my husband's, not my dad's - just hers. Of course, I loved my husband dearly, and my father was always the beacon of my life, but my daughter - my child - I just want her.
Bak: While it's so hard to be feeling as you do, and we can all relate to it, you have been through so very, very much and still don't feel well. It's only normal to be feeling as you do. I can only imagine the toll going through all this $hit, not once, but twice, has taken on you emotionally and physically. I wish I could fast-forward this whole period of time for you so that you are finally healed and back on two steady feet (if in fact any of us every truly get back to two steady feet).
May today be kind to all of us,
Love,
Linda
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Suze, not corny at all... I have always feared death and the unknown. My parents were not religious or spiritual. I have had to develop my own beliefs and as an adult do find that I am more of a spiritual person. My mother passed away unexpectantly about 5 years ago, I was so grief stricken I could hardly function.
My mother lost her leg to diabetes in 04' and loved, loved, loved animals, the day after she passed I was driving to her house and a stray dog ran out in front of me. I tried to catch it for some time before I had to give up. I sat in my car for a while and cried to my mom that I was so sorry I couldn't get him home, I was sorry that I didn't help her as much as I should have, especially after she lost her leg. When I stopped for gas later an older lady asked for help using her card at the pumps. We got to talking, she was very grateful for my assistance as it was hard for her to walk on the prostetic leg of hers. Again I broke down in tears, she was so very sweet, gave me a big hug and cried with me. She said to me, see your mother sent me to you so you would know she's still with you.
The reason for the story, I KNOW in my heart and soul that I will see my mother again. I don't know what the future holds for me, I am still terrified but I have no doubt that my family, my husband & I will all be reunited in the end. I even hold out hope that freddy, our first dog is waiting for us.
That's corny.
but it's what gets me thru the day sometimes. 0 -
Titan, It breaks my heart and makes me sick to know someone at the ripe age of 25 is stage IV TN. I pray that this new vaccine their working on is our new cure. I pray every F'ing day.
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Good morning ladies. Today is going to be a good day. I'm making sure of it. Just thought I'd let you know that I've requested a good day for each of you too!
First of all I want to thank Raider Dee, Lynn 18, Suze 35, mitt Muffin, Swanny and Christina 19 for contributing to the fund for MBJ. If I have forgotten anyone please pm me. I've thanked some of you all ready. I would like to sign MBJ's card with all of the correct names.
Christina- I loved how you posted the positives of your day. It made me smile. "hearing the frogs" really made me think of spring. We have the spring peepers here and I always know it's finally spring when we hear them
Suze- so not corny!
Bak- I wonder about my own spirituality sometimes too. I asked my healer a few weeks back when my cancer was so bad if he thought I should start going to church and he said " I've never heard of a building saving anyone" . I hope this doesn't offend anyone. I've always been very spiritual and believe in doing the right things in life, love, don't judge ( struggle with this one) and try to be the best loving person I can, appreciate all that life has to offer ( struggle with this too) etc. I believe in karma. For some reason I am going through this BC for a reason unknown to me and I truly want to live life to the fullest.
LRM- you write so eloquently and straight from the heart.
McCrimmon- your story brought tears to my eyes.
I wish I could take all of the pain away from each of you and wish I could fill all of your hearts with happiness.
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Laura send me the pay pal info too and I will send something too
You are all strong amazing women and if I can draw just an ounce of your courage I will get through this crud0 -
You all are so amazing, thank you for all the lovely stories and memories of your loved ones. Laura, I too feel I am living THIS life for a reason, and I will know it eventually.
Linda, I have no doubt your beautiful daughter will be the first soul you see to help you make that transition.
I told my BFF to always leave a bottle of Chardonnay on her counter, and when I'm thinking of her, I will find a way to move it front and center.
I am headed for the boat today and won't be online until Friday. May you all have a fantastic week!
Susan0 -
Suze, Sweet breezes and happy sailing to you!
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Thank you, Tisthyme and Sugar for donating to MBJ' s laptop fund. I am hoping to purchase her laptop tomorrow. I am really hoping this will cheer her up.
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Laruajane - thanks so much for doing this. Have you heard from MBJ this weekend? Wondering how she's doing.
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Laura did you get mine? I donated last night..
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Oh, it just breaks my heart to hear about MBJ
Been a rough few weeks financially and emotionally so I broke down and renewed my anti-anxiety pill prescription. LJ please tell MBJ I'm thinking about her and I'll be PM'ing you for info to contribute something!Suze and LJ, I'm glad you guys are doing better with the latest meds - you're both in my thoughts daily as well.
I've been plagued lately with nightmares about doctors, hospitals, machines, darkness. Last time this happened I did EMDR therapy and it helped. I should probably look into it again. I did want to share, for those of you that know about this thearapy... when the electrodes were going and I was closing my eyes and letting my mind sort of free-associate... it would always turn to my dear grandmother, who died of a brain tumor back when I was in my teens. I loved her and she loved me. Going to her house would always bring a deep sense of peace over me and my mother said I'd always pitch a fit when it was time to leave
During the therapy I'd see myself alone, down on the table in the dark biopsy room, waiting for the doctor to come in and I was crying, crying,crying. And then the ceiling would open up and the warm sunlight would pour in and I'd be lifted up and out by my gramma and we'd sit together in a beautiful sunlit conservatory filled with little birds and the plants and trees we both loved. I have no religious beliefs, I don't know what will happen when I go, but it makes me happy to think of being with her again. Peace -
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Susan enjoy your travels....hope you all have a wonderful time
Laura thanks so much for organizing and arranging for a computer for Mary. I jsut pm'ed you for your paypal account info.
I started a yoga class for cancer survivors...the average age was 70+ and I think I was the least able to do the mvements. Didn't realize how tight my right side had become post surgically.
Lovelyface....heres to 100% good news.
I am feeling the sun and loving it. My son is home with me today and it is so nice. I am taking him to the train to go back to Boston later today. I truly hope to paint some this afternoon.
I have a piece in the Newport Museum of Art right now and laughed at where they put it. Even museums don't know what to do with outsider art.
Have a terrific day ladies.
Peace and love.
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I want to thank Karbarn,painting my way,phgraham and gillone for donating to the MBJ fund also.
Thanks again to all of you.
Laura0 -
laurajane-send my best to mbj. I think it is great that you organized this for her!
Suze-have a great time!
Yes, all this must have a meaning. I do think we are here to learn something and then move on to better things.
I had a much better day, no more moping! I went for a walk and did alot of studying for my classes. No excuses, every day is a great day!
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I have a funny..but not really funny story to tell you..remember I told you about the 25 year old that has stage 4 tn? she is kinda of a friend of my family..in a round a bout way.....anyway..I was talking to my niece (she works with me)..and we were talking about her and she was saying that this girl had a very rare cancer that only 1 in 7 survive...I was like..really? I have a co-worker that also had tn...she is 8 years out (!)...and I said..well...hmm..Linda and I are still here and we are tn's...My niece kinda looked at me very strangely..like she couldn't understand why Linda and I were still around...it was sad and freaky..but a little humorous in a way.
I told her that Linda and I were OLD and that we had had mammos and SBE's for years while even though this 25 year old had had breast pains since she was 18 that no one looked into her because "they" probably thought she was too young. and that mammos aren't that great for young girls and women with dense breasts...
Oh well I thought I would share that with you.
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Babs- I just loved your post.
Titan- thanks for sharing. So happy you're here! We love you.
Painiting- sounds like you had a good day too.
Have sweet dreams everyone. I'll look forward to talking with you tomorrow.0 -
I am having shoulder pain, so of course I spent the day researching bone mets. I don't have insurance, so It makes me really nervous. I think I am more worried about debt, than death. I see my BS on the 21st. I feel like I am robbing my boys. I've spent so many thousands of dollars. My eldest is a Jr. in HS. I don't know where I'll come up with college funds.
Just having a blue day, worrying about it all. Thanks for listening.0 -
OB, I'm sorry you are feeling down. I understand worries about money. I had debt before I got breast cancer and it is certainly worse now. No one expects this to happen to them and it on top of everything else that is awful about it, it is expensive.
I just saw that you just had your MX in December - you could be having shoulder pain from the surgery and different way you are carrying yourself or you could even have it from chemo. I haven't reallly been off chemo yet, but I have a lot of arthritis feeling pain all over that is from the chemo. I've read others postings about it and sometimes it takes a long time to go away if it ever does. I've also read others post that the pain from taxane drugs sometimes peaks some time after completion of treatment.
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obxk-I know what you mean. I feel guilty as I have not been working and my hubby has been working very hard and he helps take care of me and the animals. We are broke because of MY cancer that he had nothing to do with yet he is taking the financial hit-still working hard with no extra money. I don't have kids, so I can only imagine that added stress, trying to figure out how to plan for their future. I do help out with the ssdi, but with all the extra cancer bills, no extra money! And we have cut way back on everything. Maybe the kids can work on getting scholarships? School is so expensive,I am in my 40's and taking small loans for school:( Oh well, I have always wanted to further my education.
Titan, is that true? 1 in 7? Maybe 1 in 7 survives 50 years! And the 6 0f 7 survive 30 years! Ok, my mind can't go there...never heard that before though.
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oh, I think I have been stressing this week because of my rads set up tomorrow. Not worried about any part of it except for the scans and xray. They do have to do that don't they? Always scared they will find something...I have been having out of the blue crying spells and that is what happens when I know I have a scan.
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Christina - Thanks for the kind words. I had my bimx a year ago. I'm also having shortness of breath and fatigue. If I had insurance, I'd get a bone scan and chest CT. I only had them pre-surgery. When you don't have insurance, it can make you feel as you don't count. I didn't cry when I was told I had cancer again, I cried in the office of the business manager, trying to arrange payments. I had so hoped health care reform would help, but without a public option, I fear it will be too costly and I'll have to come up with the monthly fine. Pre-existing conditions have kept me from being able to get insurance.
I know tomorrow will dawn a brighter day.0 -
Bak - Oh, the guilt is awful isn't it! My husband is the greatest, and always tells me he just wants me better, but I know he worries too. Good luck with your scans tomorrow, wear some warm socks! It's cold in there. Holding your hand, hankie in the other.
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OBXK.....crazy no insurance....any free care at your hospitals? MAssachusetts has mandatory health insurance and offers it cheaply....wish every state did that.
Bak...things will be better than you imagine when you go but it is terrifying and no one can take away your worry...hang in there....breathe and hold on...it is hell but you will do it.
Have a lovely day all you beautiful women.
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Thank you KSMathews, minxie, babe and kk Clark, Gillone,raider Dee, Lynn 18,Suze 35, mitymuffins, Swanny, Christina 19, sugar, tis thyme, Phgraham,painting my way, Karbarn,Mccrimmon,LRM, for help with MBJ's laptop. I hope I've thanked everyone over the last couple of days. If you haven't seen your name please let me know so I can put your name on the thank you card.
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OBXK, Have you checked into how much the pre-existing condition insurance coverage would be? https://www.pcip.gov/
I know the details vary from state to state, and some states are more expensive than others, but check it out.
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No Bak...not true...basically I was trying to explain when my niece heard that 1 of 7 survived TN and that my co-worker and I were still around that she just couldn't understand why we were STILL HERE...like I said..kinda funny, kinda not... I didn't tell her about how many of us are on this board and still hanging in there...
I did got to Wikipedia and print her out some info. on triple negative...
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