Best Of
Re: how about drinking?
I just got a message from Lori's (Goldie's) daughter Jeannette. Lori is now on hospice with her family taking care of her. This is what Jeannette sent me:
"Good afternoon. It is with sad news that my mom Lori Kiser. Wanted me to let you know that she is now on hospice and we arr keeping her comfortable. She loved you guys and that support group. She was very fortunate to have had the long life she lived. It was a beautiful one."
and
"Thank you. She is surrounded by family and is in good spirits. But she is in alot of pain and is ready to go"
Jeannette gave me permission to update everyone, and said that Lori would like me to update the group. I will pass along any info/updates as I get them.
Now I'm going to the blow up chapel to pray and cry.
Re: De Novo Stage IV
Thanks all, for your concern and my infusion went well! I had a pre-drip of saline, which was almost the whole bag. And then I had Herceptin for an hour. And NO shaking! I do realize that it could be different each time, though.
When I got home, I was very tired, but my BP was at a normal level, and my fever was only 99. My nurse did tell me that if I didn't do well, the next time I could have a steroid injection into my IV. So that is another possibility.
Speaking of bells….I was Stage 4 from dx, but my 3 liver biopsies missed the liver tumor. I had my dmx, chemo and rads, and then (back in 2003) the nurses threw confetti at me and sang (poor cleaners had to clean that all up). That was before bells.
Then, a few weeks later, my CT scan showed that my liver was filled with tumors, and I have been on chemo ever since. Several years ago, I lamented that I would never have another confetti party again, but the next time, the nurses gave me another confetti party since I was NED!!!
That sure was a teary-eyed experience and I never thought that I would still be battling this stuff after over 22 years.
denny123
Re: How long have you been Stage IV?
Stage 4 DeNovo - 16 years. - mets to lung and spine.
Herceptin and Arimidex from Day 1.
Currently, every three weeks, herceptin and arimidex
amontro
Re: Can we have a forum for "older" people with bc?
i had the MRI this morning and had an awesome tech, he got my IV started with 1 stick and found foam covers they use on children's ears to muffle the noise.
the test results were on mySanford Chart - not what I was expecting. Both the tumor and the swelling have gotten some bigger so I will be going back on the steroid for 2 weeks.The report also mentions neural degeneration with brain iron accumulation and Parkinson's disease.
Oncologist called me back and reinforced top priority is restarting the decadron and she'll call Tuesday to see how the headaches are doing, (no headache this afternoon or evening!). She'll consult with a neurologist and we'll deal with the Parkinson's later
Re: Ibrance (Palbociclib)
aprilgirl, love the Stones photo of you and your hubby! Dh and I try to get to a concert at least once a year. Last week we saw the Nitty Gritty Dirt Band in a small venue in Wheeling, WV. I knew we’d like it, but the show elevated us to some kind of magical place far beyond what we ever imagined. Quite unexpected! Afterwards, I said, “I think I just had some kind of religious experience!” (and I’m not a religious person, lol!)
Brutersmom, I’m unhappy when medical professionals look at us older folks with cancer as incapable and sickly. It has made me develop a steely resolve to advocate for myself. My favorite medical professionals have shown admiration towards me for my perseverance. I don’t want to be looked at as “oh you poor thing.” Look, I’m out here living life, plugging away at doing the best for my health that I can and making a go of it. I’d like to be seen as rather competent for all that I’m dealing with.
Several years ago, I had to set a couple of my older sisters straight, too. I told them to stop treating me like I was a death’s door. (exact words). I told them, “I don’t go around feeling sorry for myself and I certainly don’t expect anyone else to feel sorry for me.” And I said “I am a very capable adult.” They were trying to frame my life in a certain way, and I was not having it!
Re: My Husband, My Life, My Love, My Family, My Cancer
Hello, sondraf and all. I'm still here!
I'll go into Hospice care when my multiple illnesses finally get the best of me—which could be at any time—but in the meantime I'm lucky to live in an area where one agency offers a unique program that helps patients transition smoothly into complete hospice care at home.
Right now I am on pain meds only, with increasing doses to keep pain at a minimum. I don't want to be out of it any sooner than I must. I'm continuing my pro bono marketing work and go out and about as much as I can. My partner and I have cut back our attendance at social events to only the most important—only one or two a week. So far it's working.
Last week a big dose of Bridgerton did wonders for my spirits. (Don't forget your fan; it gets quite steamy!)
That's where I am for the moment. Love you all.
Tina
tina2
Re: My Husband, My Life, My Love, My Family, My Cancer
Thank you all for the concern. I am hoping to be discharged today. I have a feeding tube now and it seems for the next six or seven weeks I will be on in ice chip and clear liquid diet that is low acid while my esophagus heals. My main nutrition will go through the PEG tube. I'm also hoping that I can get an appointment with my oncologist soon so that I can get back on treatment. The blockage of pills was about 4 inches long so I'm not sure that any of the Xeloda that I was taking actually got absorbed. I can attest that a starvation diet does not kill cancer. They've been working on my labs all week to normalize them after I got so malnutritioned.
I am also loving the pictures. The rodeo was fun. I actually rode English most of the time but Prescott was a very "cowboy" town when I lived there so I gave it a shot. I think my horse was happy to go back to trail rides. That was something like 22 years ago. It all feels like another lifetime ago.
I will check back but I'm typing this on my phone which I am not very good at. In pockets for everybody that needs them and again thank you for messages of support. This group is amazing for that. @intolight congratulations on NED. That is amazing news!
emac877
Re: My Husband, My Life, My Love, My Family, My Cancer
cookie54 I don't even know what meridians of the teeth are, so that advice would have been lost on me!
I am 20 pounds overweight but my GP now says that''s fine. Don't lose. For the first time in my life, I embrace this twenty pounds. So no starvation diet here.
I went walking in the park along the river yesterday. It's quiet on Mondays. I saw a baltimore oriole, an eastern bluebird, and a lively family of geese. Also, because I had consumed a bunch of flaxseed to help with that familiar problem, I forged through the underbrush to a remote tree and sh*t in the woods, just as nature intended. I am sure that is more than you ever wanted to know, but as is often said here, it's the little things in life.
Re: My Husband, My Life, My Love, My Family, My Cancer
I’m going to cross post this on a couple of threads.
I monitor the comments that people make on my blog. I haven’t deleted one until today. When it showed up again, I labeled it “Spam.” Here’s the kicker—it came from a former college roommate. It went something like this: “Carol and others traveling this cancer journey. I have a friend who was told to go home and get your affairs in order and chemo burned her skin, She wanted to try other treatment protocols. I sent her to xxx.com. Also look up xxx cancer protocol at xxx.com. My friend went from stage 4 pancreatic cancer to stage 1 in a matter of weeks… Please give it a try. Love you, Carol.”
I’ve debated responding by saying that that kind of information is NOT helpful and please do NOT post stuff like this. On the other hand, I’m not sure I even want to engage with her. I think I’ll just ignore it, call it spam and make sure it’s deleted.
Why do people do this??? Who asked her??? If I put out there that I was desperate to find a cure and would try anything, I’d welcome such responses. I didn’t, I’m not, so STOP with the bad advice.
I guess I just wanted to vent. Thanks for reading my ramblings.
Carol
Re: Scared and alone. Please help.
thank you all. I really need the support right now and am thankful for your responses. My doctor called me in a prescription for Xanax because my Zoloft is just not cutting it right now. I did go back to work today after 2 days off, and it’s helping a bit to keep my mind distracted. I’m a preschool teacher. But my kids definitely know something is up. I’m waiting to tell them until I meet with the surgeon and have a plan so I can let them know how the doctors are going to help me get better. Thankful for my doctors who are also trying to help by checking in on me, making appts for me and communicating with eachother. I couldn’t be happier that I have them on my side during this