Bone Mets Thread
Comments
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patti...You will be in my thoughts and prayers. Watching you walking your path has been inspiring and very thought provoking for me. I only hope when I get to the same place in my walk, that I am able to show the same courage, and experience the same Peace that you do. Of course, as someone new to stage four (only six months now) I am perhaps using some denial as a way of saving my sanity... and talking to or even thinking about the end game is very hard, but I know it's coming and your words make me hope that I might be able to accept what's coming.
Oh for a cure....
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Patti, praying for peace and comfort for you and your family. I've posted in the D&D thread too, but I wanted to come back here because this is the place I first came to about my brother. It's been a scary couple of days but he's doing better in the hospital than he was at home, without any additional pain meds. Only a cough suppressant (Tessalon). They think the cough is from lung damage/inflammation from radiation, which showed up as "haziness" in the CT scan. Other than that, no mets, pneumonia, or blood clot. Hospice was talked about in his last appointment, but for now we're temporarily stopping Ibrance until his platelets come back up. Next PET is in March and we're hoping and praying for even a little improvement.
Hugs to all
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Patti - I am glad your loved ones are already visiting. The veil between this life and the next is very thin. You already know everyone is right there ready to embrace you ... when you are ready.
>Z<
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Thank you everyone for your kind welcome and words of support and encouragement. Those are the very qualities that led me to this thread. No one wants to be here, but it is very heartwarming as a newbie to feel the camaraderie and caring that exist among the group. I appreciate the suggestion to check out the Xeloda thread too. Although it's SEs sound daunting to me, I have been told they shouldn't be quite as bad as what I experienced 4 years ago with Cytoxan and Taxotere. I have twin grand babies due in July, so this Grammie needs to feel well!!0
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Thank you all for your kind words. Sometimes I think BC picks the loveliest women on earth. I'll stick here with you all.
Z, my friend, you asked, "Lulubee - thinking of you. How are you doing? Have you had taxol infusions? How did that go? In hospital, out of hospital? Feeling okay, feeling like crud?"
I had my second Taxol infusion this morning, at the Cancer Center at my local hospital. It is a Texas Oncology facility. I did get on the trial but I drew the Taxol-only arm. Frankly I'm totally good with that. God only knows what a Phase II drug might have done to my compromised liver, which failed in 2013 when some lobular scoundrels snuck into my common bile duct and glued it shut. I now have a mesh metal stent there and an insulted gallbladder. And after all that plus seven years of treatment, my once-glamorous liver now looks a bit like a fatty has-been on scans. And there's no way to know how a new drug will jive with my MTHFR.
So all that to say this-- yep, I asked God to be in charge of the roll of the dice on the trial. I'm totally groovy with Taxol only. He knows stuff I do not.
I think the infusions are going fine so far? I guess that sounds oddly non-self-aware for me, but the thing is I suddenly got hit with an array of things all at once and that makes it hard to pin the tail on the correct donkey as far as symptoms go. (For instance, I am remarkably weak right now, but I believe that's not Taxol but rather recovery from the heart drama and many days mostly in bed.) Since the first Taxol I've had another layer of fatigue, a not-very-festive steroid crash, and manageable constipation, but not one glimmer of nausea, thank goodness.
This feeling might not last, but right now not having to coordinate meals around popping pills feels a little like being on a holiday. And my Pollyanna side is kind of excited about losing my post-oooh, post-AI chin whiskers, which have become utterly magnificent. I hate whipping a goatee into submission on a daily basis. Ain't nobody got time for that. Also, with all this other crapola going on, I'm not noticing my bone mets pain so much! LOL. And that was our silver lining exercise for the day, my friends.
The pericardial effusion was a train wreck. It came with scattered atelectasis (areas of lung collapse) and some pleural fluid infiltrating the bottom of my lungs. All the lung stuff could be from the pericardium growing huge and pressing on them, also being hit with the inflammation in my system from the effusion. I had a sore, heavy chest, sharp shooting pains in my sternum, and I was literally gasping for air when I went to ER. Ached all over. Wondered if This Was It... so soon after being NEAD for so long?! I had looked so healthy (and young for my age, honestly) for so long that a whole lot of people had kinda forgotten I am even sick, and then overnight I'm on oxygen and have a heart problem. Dang, how I am suddenly so OLD???
But I keep reminding myself that anyone would feel like a truck hit them after all that, Taxol or no Taxol. I'm just the lucky one who got the truck AND then the Taxol. LOL
Breathing is still an effort, and so tiring. I wake up 2-3 times a night completely drenched with cold sweat. My nostrils are bloody and swollen from the tube and feel like sandpaper inside and they hurt! But if I take out the tube to get dressed or something, my saturations sometimes drop into the 70's... and I start to develop migraine symptoms... so I do still need it. The thought is the Taxol will kick in and my breathing will begin to improve after this second infusion. I am working up the courage to ask at my next appointment what exactly that means about the, umm, state of my lungs. Just really want to hear that it's not... well, you know. Yarg.
I had another echocardiogram yesterday and the report was good. "Trivial amount" of pericardial fluid and a good, strong heartbeat pattern. Solid ejection fraction, etc. WHEW. I'm doing my breathing therapy, and walking a little way down the sidewalk and around the house as I can. I feel a little stronger today, but then again that may be from those blasted steroids I got with Taxol this morning. We'll see this weekend (the crash cometh).
When I get off oxygen and off steroids, I will serve you all a virtual dark chocolate cake with raspberry cream filling and chocolate ganache accompanied by long-stemmed crystal flutes bubbling over with French 75 champagne cocktails. Because I am fancy like that.
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OMG - - I'll respond fully when I stop laughing, which may be tomorrow. I don't know how you can get through all that and still be so funny ... or perhaps that is how you made it through.
Of all the different issues, I am going to focus my prayers on your lungs may they recover fully, may breathing be easy and joyful for you. Soon. May your lungs heal so fully that the doctors don't believe the scans. Hoping for a virtual cake celebration as soon as next week. I'll be ready with my virtual fork. But I think you have a long weekend ahead. Please check in ... and take exceptional care of yourself.
>Z<
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OMG Lullubee - What an adventure, for lack of a better word. We should be preparing that cake for you lol! I will be sending you healing thoughts.
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Z,
I think I speak for many of us here, Must Laugh. My death squad is right there in with me. They recently named me The Hit.
Off to 2 MD appts today to move the end of life meds procurement. One at 11 and the other at 5. I'll nap in between
Did I tell you that my BFF has moved in with me? Is a complete gift.
Love,
Patti
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Patti so glad your BFF is with you! Makes this time so much better!
Lulubee. I just started round 3 of Taxol. I am more tired and have lost most of my hair. For me the worst se s are runny nose - no hair in nostrils so it flows down and every once in awhile I find a bit of poop in my pants. Don't feel it just find it !!!! So weird. All in all pretty manageable. Hope it's the same for you. Sounds like you have enough other issues to deal with
Babs
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You ladies are the BEST. I love your sense of humor in the face of such darkness and despair. Thank you! You all truly are a gift from God.
Amy
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Babs...I'm on Xeloda and I don't have any nose hairs either. Kleenex boxes now in every room of the house. About the surprise poopies, yeah, I get those every once in a while too. I wear Depends when I have to, no muss, no fuss.
Satti...so happy that your BFF is with you. It will ease the transition for both of you. Hope they don't delay those meds for any reason.
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Lulubee, you have such a wonderful sense of humor. The virtual cake sounds delicious, can't wait. Thank you for sharing your journey with us. You are a blessing! May God bless you with peace and joy!
Diane
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Lulubee, thanks for that lighthearted message, I loved it! Smiled the whole way through. Can you make that cake dairy free?
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Lulubee,Thank you Thank you!
Hope your lungs heal quickly so you can get to the virtual kitchen:)
Laughing is the only way to face this crazy disease many days...aargh!
Patti, so glad your bff is with you. The "hit" indeed! Sending hugs to you.
Love this group! Wishing for a painless weekend for all!
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patti- stay put. love and hugs MJ
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Patti, sending love and hugs. I so want things go well for you right now. MJH
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Babs - I am glad that Taxol is okay but it doesn't sound fun. How many more? Do you feel it is working?
>Z<
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BABS! I'm so glad to come across another Stage IV Taxol gal! I don't feel quite so all alone now. Maybe we should post over on that thread every now and then and see if we can draw out any more? Surely we're not the only ones on this treatment currently...?
ETA: Here's the sleepy thread-- Taxol for Stage IV
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z. I'm on Taxol until it stops working at keeping my mets in check! So I hope forever!!!!
Babs
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good morning, my friends.
Yes, it's a huge blessing for both of us. We had wanted to go for a 3-4 day trip to lie around at the beach in our jammies and yak, more sleep or whatever and didn't work that out so here we Are! I had just gotten a delivery or one of those home cooked meal delivery places, so we have loads of food (6 days!) and her family is nearby is case we need anything else. It's just heaven.
The meds are complexly approved, and I should have them by Wednesday or Thursday. I plan to take them next Saturday, around 3 pm PT. I'm so thrilled the end is almost here. The docs and their staff have been wonderful. I invited my MO to my KTB event, he said he might come! KTB =Kick the bucket
I remain lucid and mobile though no driving. Just discovered thecodeine and morphine make one goofy! I am talking Donald Duck goofy!
More later.
Happy Saturday!
Love,
Patti
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Patti, I admire you and your attitude. Who'd have thought that reading about someone's plans for her last days would give me a smile and a chuckle. I will always remember your use of the terms "death squad", "the hit", and now " KTB event". You have shown us your courage and shared your feelings honestly. You have taught me more than you know. I wish you joy and peace.
Lynne
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Patti!
Love your humor! Did you see this recent obit a doctor wrote for herself? Its just wonderful, I intend to steal her idea, completely... It would be great to write your whole life story in this lighthearted way, and really, its so just much more realistic and accepting of the end of life than the heavy and somber approach
http://www.dailymail.co.uk/news/article-4145600/Wh...0 -
http://host.madison.com/news/local/obituaries/hegg...
Thanks Cure-ious........Here is another article on Dr. Kay Heggestad. She is from Madison, my home town. She was well loved and liked as a physician.
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Patti, I too am blown away by your cheerfulness and positive approach to the end of your life. I'm not sure I could be so brave. I so admire you. I hope these last few days can be enjoyed to their fullest and that you are painfree and continue to be Donald Duck goofy or even Goofy, goofy - there's nothing wrong with that!
Amy
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Daffy Duck goofy?
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Patty, I wish you a very beautiful transition. Your peaceful happiness will radiate to all who love you. You will always shine on. When my time comes, I will re-read your posts and hopefully be able to emulate your grace.
((( hugs)))
Chelle.
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Happy Monday Patty! Hope you have a great week surrounded by friends and full of joy.
>Z<
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Patti - I hope you get your meds as planned this week. How are you today? Still goofy? I will be with you in spirit on Saturday and my wish is that you have a peaceful transition on the other side. Big hugs to you!
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Patti. Wishing you a peaceful transition filled with love from those with you!
Bab
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Patti, You continue to be in my thoughts. We are all with you in spirit.
Lynne
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