Between the Devil ( the red one) and the deep blue sea
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hey Marybe, sorry about your friend Ellen. I'll add her to my prayer list, hopefully she is resting and free from pain. Good luck with chemo tomorrow and enjoy lasagna tonight. My DH owns a business and has an employee who's on SS. We have to schedule carefully so he doesn't earn too much and lose eligibility and therefore his medical insurance. It's a fine line to walk but can be done. Sending love and {{hugs}}
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Marybe, I feel bad that you felt obligated to post!! We just need a "....still kicking...." every once in a while to know you're as good as can be expected. Poor Ellen, what a sad journey she's had!
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Sorry to hear that they found more mets in Ellen. I hope they can get her to a painless state, so she can be comfortable at home.
I never feel guilty when B/C kills another sister, but I do feel the sadness for their lives cut short and outrage for this disease and it makes my own sense of mortality come into clearer focus; it always makes me think of the Donne prose poem..."...send not to know for whom the bell tolls, it tolls for thee."
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I'm so sorry to hear about your friend, it is so hard to see someone you love go through something you know so well that is so hard, my aunt was diagnosed last year with lung cancer, she was a great help for my mum I called them "cancer buddies" my aunt now has mets in her brain and isn't doing to well as she is too frail for treatment at the moment, I know my mum feels like you, I believe it's the positive thoughts you all give everyone and that god will know when your body is tired, I can only speak as a daughter of a mum with cancer and it's heart breaking to watch so many people go through this horrible disease,
I have learned so much from you all on this site and that is, although your scared there is always hope and I see hope from everyone of you! You are all an inspiration.
Big hugs xxxxxxx0 -
Oh Marybe, I'm so sorry about your friend Ellen! I'm also sad to hear of the guilt you're feeling.
You wrote: I am always feeling guilty that it isn't me when it seems like so many others have a lot more to live for than I have.....especially when they are younger since I have pretty much done all I wanted to do. What I am trying to say, is it's just not fair.
Aww, dear, you have so much to give and I believe you posted not long ago that you'd like to travel and meet some of us from this site. So, when are you going to be in my neck of the woods?? I want to fix dinner for you. I'm serious!
Hang in there! In case you haven't noticed, you're mighty special to us!
((( You )))
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I'm going to drive down and visit Marybe in the Spring. Great road trip!!
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So terribly sorry for Ellen and her family... will keep them uplifted in prayer. We are all born, and we all die, but it's the living that counts. I know she has had a blessed life, even if she may leave it early. I pray that she remains comfortable and surrounded by love.
We surround you with love too, lady... you are remarkable and an inspiration to many of us. Keep those counts going down !!
Lasagne sounds marvelous... but I have no taste buds now, so... you enjoy for me, PLEASE!
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Just a thought I'm going to throw out there, knowing that with so many undergoing treatments and ongoing changes it might not work.........if there is a group, or even a few that might be interested in a vacation in Italy, let me know. I've been there 9 times, including a couple of years ago, and am "hankering" to return.
I intended to be a tour manager for my retirement years, and, in fact, I took the course and did tour managing for 2 years, including the first year I was diagnosed with a recurrence. I haven't done any tours now for 2 years, but my yearning for travel has continued. And, being NED right now (SO FORTUNATE), I feel well and would love to help plan a trip, if anyone would be interested. Just let me know.
Lane
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Marybe: I've been off the boards for a bit and didn't see you anywhere when I returned. Glad to have found you again. I'm so sorry that your friend Ellen is not doing well.
I am posting this to you because I just spoke with a new friend in my hometown that has liver mets as well. She told me that her onc said that her liver looks like "swiss cheese" (Stage IV dx right off the bat). She was just released from the hospital yesterday after having a chemoembolization done. I'm wondering if any of your docs have brought this up? I haven't seen you mention it, not in the posts I have read, at any rate. My friend has also had Y90 (Yttrium90-radioembolization - I may have the terminology incorrect) done. I know you are doing Adriamycin right now and hope that is going well. I did that back in 2008 with my initial dx.
Peace and hugs,
Theresa
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Treso, I checked into chemoembolization as well as radiofrequency ablation awhile back.....once with my onco's suggestion, but that was after I had checked it out on my own. I should have done it the lst time....I think, am never sure since I know of some who did not fare so well with it.....but when my onco sent me which was several yrs later and after he had sort of pooh-pooed it when I told him about it earlier by saying it was a systemic disease and it would be a waste just to treat one area, the rad/onco said there were too many tumors and also said we should treat it systemically, meaning chemo, but none of the chemos I have done since then have worked at all on me. Now the tumors are all way too large so I think I missed my chance with that one. Maybe if we could get them to shrink we could do it, but I sort of have my doubts that will ever happen. Anyway, glad you found me. I am only up for a bit....had to cut up bread for fondue and grate a little more cheese since it's that time of year again for the fondue parties. I was pooped earlier so went to bed for a few hours. I am hoping it is not icy in the morning as I plan on driving to KY for Zoh's visitation....good thing I googled the funeral home or I would not have know it was in Lexington...I was heading to the town she lived in I thought and never would have found the place. So very sad about her.
I hope your friend does well after her procedure. I know it works well for some and hope she is one of them. Liver mets are scary. Yes, I am very late to the adriamycin scene....most do it to start, but I did all the hormonal stuff before doing any chemo at all. I am having some liver pain, (this is new), so am not taking that as a good sign.
Thanks for all your good wishes and prayers for Ellen. I talked to her husband on Tues night and they were making arrangements. They are keeping her sedated and she had communion and they placed a cathedar since she was unable to void on her own....last food she had was on Friday. He said it would just be a matter of time, but I have heard nothing.
I love Italy, Lane. Just a few nights ago my friend in NO called and said she wants to go to Venice....I told her just to keep thinking those thoughts, but I can't seem to get to Florida or NO and have been talking about going there for a long time now.....but I did make my trip to MI so hope springs eternal, right?
Night all.....am going back to bed now....had a nice little snooze then a dog woke me up and I decided to finish my prep for tomorrow so it will be ready.
Lasagna turned out great and we had a nice time. I have actually been eating sensibly since then.....the entire office is so that makes it easier.
Later, ladies. Thanks for bearing with me....I will be back to my normal chatty self soon...Beware.
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Marybe, the funeral home has three locations. Maybe double check if you haven't already.
Safe journey
GInger
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Marybe, thinking of you and your good friend. Take care.
Lane
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I found it and made the round trip....it was actually an easier drive than to Portsmouth, but of course I was paranoid about getting lost. Henry (DH) was very glad that I came and I told him I was there as a representative for all of us on BC.Org. I posted a pic of him and the children on the Zoh is a Special Angel thread. I do not like going to funeral homes, but am glad I went.
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Thanks so much for representing us, Marybe. Reading your other post earlier this morning was when I found out about Zoh. I hadn't seen the post about her passing.
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i love you. you know thar.. i'm so proud of you for going.. nothing else i can say....3jays0
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In my thoughts. Still lighting your candle.
Maya2
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Marybe: Thank you so much for representing us. I trust Zoh is in a place of light and love. My heart aches for her family.
Theresa
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That was so thoughtful for you to have gone to Zoh's funeral, Marybe. I did not know her, other than I remember her avatar with a little baby. Then, I read that she was only 44, and her daughter is now age four. That is so tragic when B/C (or any disease or accident) cuts a life short like that.
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Oh...it just breaks my heart to hear that a woman that young must leave her small child, but the story she told her little girl was so dear and touching, about the gold thread that would always connect them. I cry again just remembering it, and it makes me want to just hug my little grands so close to my heart. I didn't know Zoh, but she obviously made such a difference in so many women's lives on this site.
I so pray that she had a peaceful passing and is flying with the angels.
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Marybe: I was thinking about you today and your last post to me when you said that you had liver pain which was new. Here's a thought: never any pain, no chemos have worked, on a new chemo for you, pain in liver...perhaps this one is working. Just something I wanted to share with you since you have been on my mind.
From one wordy gal to another (you should hear how long my phone messages are...I think "stop talking, stop talking" and yet, I don't),
Theresa
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Saw the onco yesterday and he said since I am exhibiting new symptoms, we will schedule a CAT scan of the liver since that is the main concern....bone scans can wait. I am hoping they will be able to do it Jan 30, since I am off then......Yes, I am still working. Onco said when he saw me in my uniform I thought you were going to quit working and I replied Slowly, slowly I am easing out. Beat me with a wet noodle. He did not feel anything when he pushed around in the liver area. I asked him if I was being overly impatient wanting scans now and he said not in my situation, not overly. They did the dreaded CA 27.29 since I wanted it and I will get those results on Friday, but will have to get them on my cell phone since I am going home early that morning for Ellen's funeral and memorial reception. I will be content if they went up again, but not much like last time.....if there is a big jump, I think we can be prepared to see progression when I have the scan done. I asked him what then and he said Well, then we move on. I hate moving on, but at least he must have something up his sleeve and did not just shake his head.
Thanks for the positive thoughts Treso.
I am glad I went to Zoh's funeral. I hope her family is doing well considering.
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Marybe: I hope your liver scans go well. I have heard of people on this site that are living with liver involvement but have stability and no progression, so it is possible. I will pray that it is the same for you. Keep that positive inspiring attitude!
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Marybe, I just posted the following imformation on the Stage 4 fourm, in the Everolimus thread. You might be able to do hormonal therapy again. Ask your onco about Sirolimus (Rapamune), a drug in the same family as Everolimus which is now generic. My onco says that the French love it, and the Indians combine it with Tamoxifen for those who can't afford Everolimus. I started on this combo 3 weeks ago and I could see an improvement in the tumor site on my chest after less than 10 days. I have had no skin in that area for almost a year, due to the tumors breaking through my skin. Now, skin is clearly growing. Also, some of the lumps (they are on the surface) are gradually breaking down, while others have stabilised. They were growing rapidly before.
I am on 1mg of Sirolimus (1 pill a day) and 10mg X 2 of Tamoxifen. My onco says that most oncos consider Sirolimus as being in the same category as Everolimus, but the pharmaceutical people play down Sirolimus because it is no longer under a patent, so they can't make money from it. It's early days still for me, but so far it's been encouraging. All hormonal drugs stopped working for me more than a year ago, and since then I've been through quite a few chemos. They stopped working after less than 3 cycles each too.
Now there's hope. Please talk to your onco about Sirolimus, Marybe. (((Hugs)))
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Marybe ... I'm so sorry to hear about the loss of your friend Ellen.
I'll be anxiously waiting to hear your results on Friday.
I wish I could afford to just jump in my car and drive to Ohio and fix dinner for you. I swear, if my financial situation changes I might just have to do that if you'd allow it.
((( You )))
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Marybe, perhaps the slight rise was just dying cells dumped into your system? I`m glad you`re still feeling good, now quit the one job and enjoy some Marybe time while you still feel like doing something. What WILL you do with your new-found time?
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Thinking of you, too, Marybe. Start making some fun plans for your retirement.
Lane
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So sorry to hear of Ellen....prayers for her family. And always praying for you!!
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So sorry that you lost another buddy to this Beast!
If my washing machine can shrink the waistband of every pair of jeans I own, surely there is something that will shrink those liver tumors of yours. I would love nothing more than to check in here on Friday and hear some good news about those tumor markers. Fingers crossed.
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Marybe, I'm so sorry to hear about your friend Ellen.
And here's hoping the scans show your tumors shrinking!
Leah
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glad to see your'e back here, marybe.. ive been down and out, the thyroid #s are in the wrong zone again.. i'm prayijg for you daily, and hope the #s are going down for your liver!....i can't believe you have yet another funeral to attend.. you are unbelievablr, gitl.. a warrior for us to follow!. (i know you'll hate THAT one ).3jays0
