Cancer Support and Caregivers Who Are Trail Blazers!

rustedrims · 05-16-2022, 08:43 PM

I am heart broken. My cousin Dave has lost his fight of 3 years days ago. I will miss him terribly. It hit me hard in the parking lot at the hospital. Started crying and couldn't stop. I was there for a CT scan. I realized he wouldn't be there to tell how it went. We kept in close contact of what we were going through. I got it first but he got it harder and more of it. When I got in there I told the girls what was going on with me so they knew they were not hurting me. Lost it again. I was waiting for my jacked up water to drink and never got it. I told Jen that I didn't get my water. She told me why I didn't get it. Turns out there is a shortage of that stuff. They get it from China! When I get my treatments they mix it up when I get there! Why does that stuff come all the way from China and they can mix the treatment stuff up when I get there?!..

Got to thinking the other day....... My last maintainance treatment is October 2023. The other day I was out cutting up broken branches on a tree. A lady came out and asked me what I was doing? I should have told her I was staying in remission. Then started to think that every time I get
a treatment it takes away a little bit from me. I don't notice things right away but there are things missing. I love to do yard work! Cut branches up stack the sticks deliver them and mow yards! I will fight as long as I can to keep that part of me! What I did loose is strength balance and coordination. Gotta have that to ride the bike. Yeah I can zip around very short distances but that's not riding. Not relaxed and comfortable like I need to be to ride. Sold the bike today. That stuff took away 2 things I love dearly .Dave and riding.

Thank you for reading my ramblings and be safe out there.

s

pynkkameleon · 08-09-2022, 02:10 PM

It’s been an awfully long minute since I last posted here. Life happens and time just seems to fly by.

Sending out my deepest and heartfelt condolences to those of you that have lost loved ones. I can see that there have been some tremendous losses recently for some of you. I wish you peace and comfort to help you heal your hearts.

I was diagnosed with stage IV recurrence this past May. Breast cancer to my bones and chest wall. Treatable but no longer curable. Originally it was stage 2b in 2009. Although I’m pretty annoyed by this latest bit of everything, I’m in a very good and happy place in my life right now. My two youngest, will turn 21 in 3 months. Our son lives at home with us and our daughter recently moved in with her boyfriend of almost 4 years. My two older ones are very happy, stable and in strong relationships. One lives in Alaska and the other in Oregon. TexasCowboi and I will celebrate 7 years married next weekend, 10 years officially together. We purchased an old but (mostly) sturdy motorhome late last year (lovingly named “The Green Turd”) with grand plans of sneaking in some adventures over the next few years as TC inches closer to retirement. Right now, those plans are on hold though while we deal with this nonsense.

In the meantime, treatment for now is pretty straightforward. Ibrance and anastrasole pills daily, Zometa infusions monthly. This will continue until I build up a tolerance to the meds and have to move on. I have very few mutations, so for now it limits my options. I’m not eligible for any stage IV studies and there are currently only 5-7 treatment line options available for me, so the longer I can stay on one line, the better. Traditional chemo will be around the 3rd to 4th line. I’ll have my first new set of CT scans on the 17th to see if the medicine is working and everything is staying stable. Side effects so far are very tolerable. Some nausea, aches and pains and fatigue mostly. I just switched to a new Oncologist and she’s promised to keep us in the loop every step of the way and not sugarcoat anything. She’s young, smart as a whip and breast cancer is her specialty. This is still pretty new for us and we are learning as we go. I learned to be my own expert the first time around but we’ve quickly learned that metastatic disease is a whole different beast and treated much differently. Stability is the name of the game now. Scans every 3 months and monthly infusions with labs every month for the foreseeable future are the new normal. As are making lots of new memories and enjoying many adventures filled with laughter. Because that’s the way we roll anyway. This was just a reminder that time is short and to not take any of it for granted.

Thinking of you all. Check in if you feel up to it and let us know how you and yours are doing.
Big love. Be good to you.
Vonni -

clay · 08-09-2022, 09:25 PM

((((((((((((((((Vonni)))))))))))

It is great seeing a rep from you & here on BFP> BUT I am saddened to hear this latest challenge!

Thought of you over the last few years, wondered how you were doing, and smiling at our chats we had long ago!!

It made me smile, seeing you with TC & how happy you are!! I know how much you wanted that, too!!

As you can see, I am now married, waiting on my sweetie to retire in next few months, so we can travel! We bought a retro camper that is in excellent, original shape, with exception of a newer fridge. We dubbed her BleuBelle, camp with a great group of older ladies, & have a blast. We go a few days every month, & are booked up now until Aug 2023!! I am very happy, and have a winderful wife!!

Know I hold space for you in my heart & we send you white light energies!! Thinking of you & TC as you travel this challenging road ahead now.Much love, always, pynk!! clay

Quote:

Originally Posted by pynkkameleon

It’s been an awfully long minute since I last posted here. Life happens and time just seems to fly by.

Sending out my deepest and heartfelt condolences to those of you that have lost loved ones. I can see that there have been some tremendous losses recently for some of you. I wish you peace and comfort to help you heal your hearts.

I was diagnosed with stage IV recurrence this past May. Breast cancer to my bones and chest wall. Treatable but no longer curable. Originally it was stage 2b in 2009. Although I’m pretty annoyed by this latest bit of everything, I’m in a very good and happy place in my life right now. My two youngest, will turn 21 in 3 months. Our son lives at home with us and our daughter recently moved in with her boyfriend of almost 4 years. My two older ones are very happy, stable and in strong relationships. One lives in Alaska and the other in Oregon. TexasCowboi and I will celebrate 7 years married next weekend, 10 years officially together. We purchased an old but (mostly) sturdy motorhome late last year (lovingly named “The Green Turd”) with grand plans of sneaking in some adventures over the next few years as TC inches closer to retirement. Right now, those plans are on hold though while we deal with this nonsense.

In the meantime, treatment for now is pretty straightforward. Ibrance and anastrasole pills daily, Zometa infusions monthly. This will continue until I build up a tolerance to the meds and have to move on. I have very few mutations, so for now it limits my options. I’m not eligible for any stage IV studies and there are currently only 5-7 treatment line options available for me, so the longer I can stay on one line, the better. Traditional chemo will be around the 3rd to 4th line. I’ll have my first new set of CT scans on the 17th to see if the medicine is working and everything is staying stable. Side effects so far are very tolerable. Some nausea, aches and pains and fatigue mostly. I just switched to a new Oncologist and she’s promised to keep us in the loop every step of the way and not sugarcoat anything. She’s young, smart as a whip and breast cancer is her specialty. This is still pretty new for us and we are learning as we go. I learned to be my own expert the first time around but we’ve quickly learned that metastatic disease is a whole different beast and treated much differently. Stability is the name of the game now. Scans every 3 months and monthly infusions with labs every month for the foreseeable future are the new normal. As are making lots of new memories and enjoying many adventures filled with laughter. Because that’s the way we roll anyway. This was just a reminder that time is short and to not take any of it for granted.

Thinking of you all. Check in if you feel up to it and let us know how you and yours are doing.
Big love. Be good to you.
Vonni -

pynkkameleon · 08-09-2022, 11:00 PM

Quote:

Originally Posted by clay

((((((((((((((((Vonni)))))))))))

It is great seeing a rep from you & here on BFP> BUT I am saddened to hear this latest challenge!

Thought of you over the last few years, wondered how you were doing, and smiling at our chats we had long ago!!

It made me smile, seeing you with TC & how happy you are!! I know how much you wanted that, too!!

As you can see, I am now married, waiting on my sweetie to retire in next few months, so we can travel! We bought a retro camper that is in excellent, original shape, with exception of a newer fridge. We dubbed her BleuBelle, camp with a great group of older ladies, & have a blast. We go a few days every month, & are booked up now until Aug 2023!! I am very happy, and have a winderful wife!!

Know I hold space for you in my heart & we send you white light energies!! Thinking of you & TC as you travel this challenging road ahead now.Much love, always, pynk!! clay

(((((((Clay!)))))))

Well hello there old friend! It’s been far too long since we last caught up. Thank you for your words of love and support.

I’m very happy to hear that you’ve found your person and are doing so well! It sounds like you are truly living your best life right now. Long overdue but clearly you’ve just saved the best for last

Kätzchen · 08-16-2022, 09:53 AM

Just wanted to check in, today, and quietly share that I am getting a biopsy done today to confirm if i have cancer, or not.

Not sure what the outcome will be, but I live each day with zest for life and I plan to be present and clear minded about what I have to do next.

Blessings to us all,

K. 💐

pynkkameleon · 08-16-2022, 11:35 AM

Thinking of you Kätzchen.

Sending all of the positive into the universe for a good outcome. Here if you need to talk, vent or just hear a stupid joke or two to distract you.

BullDog · 08-16-2022, 04:31 PM

Best wishes to you Katchen! Also to everyone else in this thread and others who are facing challenging health issues. I see so much strength, determination, resiliency, and grace expressed here. I admire all of you and wish you nothing but the best.

I have been extremely healthy all my life until the last several months. I have never been in the hospital, had surgery, broken a bone, or had any serious issues at all. Up until recently I hadn't been to a doctor in decades and didn't have health insurance - both of those are no longer true (thank god for the ACA). I have always known I was extremely fortunate and tried to never take my good health for granted. But don't be like Bully - you need regular checkups just like your car does.

I have been referred to go see a cancer specialist in Albuquerque at the end of the month. I've been quite sick and lost 100-150 pounds - probably closer to 150 - and I have been in a lot of pain (have meds to help with that now) and have a lot of strange symptoms. I have received good care so far and I am very impressed by the qualifications of the cancer specialist.

Best wishes to all. I will keep fighting.

05-16-2022, 08:43 PM	#1
rustedrims Member How Do You Identify?: Butch Preferred Pronoun?: she/her Join Date: Mar 2011 Location: Northern Ohio close to Lake Erie and ice-cream places Posts: 445 My Photo Gallery Thanks: 3,125 Thanked 2,554 Times in 368 Posts Rep Power: 21474851	hi I am heart broken. My cousin Dave has lost his fight of 3 years days ago. I will miss him terribly. It hit me hard in the parking lot at the hospital. Started crying and couldn't stop. I was there for a CT scan. I realized he wouldn't be there to tell how it went. We kept in close contact of what we were going through. I got it first but he got it harder and more of it. When I got in there I told the girls what was going on with me so they knew they were not hurting me. Lost it again. I was waiting for my jacked up water to drink and never got it. I told Jen that I didn't get my water. She told me why I didn't get it. Turns out there is a shortage of that stuff. They get it from China! When I get my treatments they mix it up when I get there! Why does that stuff come all the way from China and they can mix the treatment stuff up when I get there?!.. Got to thinking the other day....... My last maintainance treatment is October 2023. The other day I was out cutting up broken branches on a tree. A lady came out and asked me what I was doing? I should have told her I was staying in remission. Then started to think that every time I get a treatment it takes away a little bit from me. I don't notice things right away but there are things missing. I love to do yard work! Cut branches up stack the sticks deliver them and mow yards! I will fight as long as I can to keep that part of me! What I did loose is strength balance and coordination. Gotta have that to ride the bike. Yeah I can zip around very short distances but that's not riding. Not relaxed and comfortable like I need to be to ride. Sold the bike today. That stuff took away 2 things I love dearly .Dave and riding. Thank you for reading my ramblings and be safe out there. s __________________ I don't want to be perfect because if I was then I will loose the ability to learn.

08-09-2022, 02:10 PM	#2
pynkkameleon Member How Do You Identify?: Queer Femme Preferred Pronoun?: Girly ones Relationship Status: Riding off into the sunset with my Cowboi Join Date: Feb 2012 Location: Texas Posts: 130 My Photo Gallery Thanks: 1,279 Thanked 484 Times in 98 Posts Rep Power: 7809054	Popping in to say hello.. It’s been an awfully long minute since I last posted here. Life happens and time just seems to fly by. Sending out my deepest and heartfelt condolences to those of you that have lost loved ones. I can see that there have been some tremendous losses recently for some of you. I wish you peace and comfort to help you heal your hearts. I was diagnosed with stage IV recurrence this past May. Breast cancer to my bones and chest wall. Treatable but no longer curable. Originally it was stage 2b in 2009. Although I’m pretty annoyed by this latest bit of everything, I’m in a very good and happy place in my life right now. My two youngest, will turn 21 in 3 months. Our son lives at home with us and our daughter recently moved in with her boyfriend of almost 4 years. My two older ones are very happy, stable and in strong relationships. One lives in Alaska and the other in Oregon. TexasCowboi and I will celebrate 7 years married next weekend, 10 years officially together. We purchased an old but (mostly) sturdy motorhome late last year (lovingly named “The Green Turd”) with grand plans of sneaking in some adventures over the next few years as TC inches closer to retirement. Right now, those plans are on hold though while we deal with this nonsense. In the meantime, treatment for now is pretty straightforward. Ibrance and anastrasole pills daily, Zometa infusions monthly. This will continue until I build up a tolerance to the meds and have to move on. I have very few mutations, so for now it limits my options. I’m not eligible for any stage IV studies and there are currently only 5-7 treatment line options available for me, so the longer I can stay on one line, the better. Traditional chemo will be around the 3rd to 4th line. I’ll have my first new set of CT scans on the 17th to see if the medicine is working and everything is staying stable. Side effects so far are very tolerable. Some nausea, aches and pains and fatigue mostly. I just switched to a new Oncologist and she’s promised to keep us in the loop every step of the way and not sugarcoat anything. She’s young, smart as a whip and breast cancer is her specialty. This is still pretty new for us and we are learning as we go. I learned to be my own expert the first time around but we’ve quickly learned that metastatic disease is a whole different beast and treated much differently. Stability is the name of the game now. Scans every 3 months and monthly infusions with labs every month for the foreseeable future are the new normal. As are making lots of new memories and enjoying many adventures filled with laughter. Because that’s the way we roll anyway. This was just a reminder that time is short and to not take any of it for granted. Thinking of you all. Check in if you feel up to it and let us know how you and yours are doing. Big love. Be good to you. Vonni - __________________ ~Vonni~ *Don't define your world in black and white..* *There is so much hiding amongst the greys* *❤❤❤❤❤*

08-16-2022, 09:53 AM	#5
Kätzchen Member How Do You Identify?: Femme Relationship Status: Involved with someone special in my hometown Join Date: May 2010 Location: In a small community Posts: 16,287 My Photo Gallery Thanks: 29,211 Thanked 33,648 Times in 10,737 Posts Rep Power: 21474868	Just wanted to check in, today, and quietly share that I am getting a biopsy done today to confirm if i have cancer, or not. Not sure what the outcome will be, but I live each day with zest for life and I plan to be present and clear minded about what I have to do next. Blessings to us all, K. 💐 __________________ “The way someone treats you is not a reflection of your worth: It’s a reflection of their emotional capacity,” — Jillian Turecki. ”Without justice, democracy dies,” — Jess Michaels (Epstein survivor). ”The planet can provide for human need, but not human greed,” — Dr Jane Goodall. ”The needs of the many, outweigh the needs of the few.” — Spock in Star Trek II: The Wrath of Khan (1982).

08-16-2022, 11:35 AM	#6
pynkkameleon Member How Do You Identify?: Queer Femme Preferred Pronoun?: Girly ones Relationship Status: Riding off into the sunset with my Cowboi Join Date: Feb 2012 Location: Texas Posts: 130 My Photo Gallery Thanks: 1,279 Thanked 484 Times in 98 Posts Rep Power: 7809054	Thinking of you Kätzchen. Sending all of the positive into the universe for a good outcome. Here if you need to talk, vent or just hear a stupid joke or two to distract you. __________________ ~Vonni~ *Don't define your world in black and white..* *There is so much hiding amongst the greys* *❤❤❤❤❤*

08-16-2022, 04:31 PM	#7
BullDog Infamous Member How Do You Identify?: Dominant Stone Butch Daddy Preferred Pronoun?: She Join Date: Nov 2009 Location: In A Healing Place Posts: 5,371 My Photo Gallery Thanks: 18,160 Thanked 22,637 Times in 4,462 Posts Rep Power: 21474857	Best wishes to you Katchen! Also to everyone else in this thread and others who are facing challenging health issues. I see so much strength, determination, resiliency, and grace expressed here. I admire all of you and wish you nothing but the best. I have been extremely healthy all my life until the last several months. I have never been in the hospital, had surgery, broken a bone, or had any serious issues at all. Up until recently I hadn't been to a doctor in decades and didn't have health insurance - both of those are no longer true (thank god for the ACA). I have always known I was extremely fortunate and tried to never take my good health for granted. But don't be like Bully - you need regular checkups just like your car does. I have been referred to go see a cancer specialist in Albuquerque at the end of the month. I've been quite sick and lost 100-150 pounds - probably closer to 150 - and I have been in a lot of pain (have meds to help with that now) and have a lot of strange symptoms. I have received good care so far and I am very impressed by the qualifications of the cancer specialist. Best wishes to all. I will keep fighting. __________________ Love consists in this, that two solitudes protect and touch and greet each other. - Rainer Maria Rilke