Life does not end with a stage IV diagnosis (really!)
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Wendy, you hang in there. I also thought I wouldn't be alive to see this. I'm so thankful I am. Wishing ev the best
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Oh my gosh, I was waiting to see a pic of Harper. That smile could launch a thousand ships! So cute! My big dream is to have my daughters move back closer and start families. it's unlikely my son will first as he is a traveling photographer....I hope you get the big C under control too Kandy.
Great picture GG!
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Hello everyone,
Just wanted to check in... I've been negligent about keeping up with everyone. There have been some interesting posts while I have been gone.... I was so happy to see the picture of Harper, Kandy....and I will admit, jealous. I think I've said before that I am so afraid I won't meet my own grandchildren.... so much so that I actually encourage one of my kids (my stepson. My husband just LOVES that...) to consider potentially having a child with someone. Isn't that terrible? But he's the most likely... and I want a baby in my life! They are so full of joy, life and hope. And Harper is a pretty snazzy dresser for a 12 week old!
Hope everybody has a good weekend.
XO
Andi
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so today I figured I would try something new. I love the dragon boating so I thought try out Outrigger was such a great idea. We left the harbour and went deep into the ocean where the waves are higher. Was all great until we tipped the boat. I thought. Okay this is how I'm going to die the icy water closed over my head and all I could think was haha cancer you lost
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Wendy,
Am chuckling over here...
Patti
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I love that screw cancer spirit, Patti 😆
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Today was the first day in over seven months that I actually went for a 20+ minute walk with my rescue Bulldog, Sofia, and my DH. I still have to use my cane (better than the walker I had to use back in April/May
)....) because of the right hip and other bone mets. Last scan showed that the cancer is infiltrating the bone marrow of my hip, and the mets in my thoracic spine are getting bigger, but I have to try and find some normalcy and joy in the outdoors.
Sofia loved all the attention from the people fishing off the pier. Entrance to the park was free today, too. Another blessing.
Warmest wishes to all my St IV friends out there. We have to keep on keepin' on.
Lita
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Lita, you look great. Good going on the walk. I'll enjoy it vicariously.
Love, and thanks to you all,
Patt
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Friends and family start arriving tomorrow for dd2 wedding on Saturday. Even though I just retired from wedding planning, I'm getting a little anxious about this one. I know it's going to be lovely, but being in the mom role and turning over responsibility to someone else, just feels unnatural
. I guess I never really understood how much I need to be in charge, until now.
Even though I'm supposed to let go, I've created a small folder with pertinent details and timeline just in case. Maybe it's my security blanket...who knows.
The one time in my life I'm hoping for snow just for the ambiance. I'll post a few photos next week.
Take care all,
Amy
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Amy- Enjoy the wedding! It is wonderful seeing your children so happy
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Lita, LOVE that photo of you and your lil pooch! What beautiful scenery around you.
AmyQ, a folder for the wedding details is not a bad idea, just in case something is forgotten. I look forward to seeing photos, wedding ones are a big favorite of mine
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Hi! I am new here, and to be quite frank, just need some friends. I was diagnosed in 2012 and have chased away pretty much everyone I knew.
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Dee12345....welcome. St IV DOES seem to chase people away on its own. But we're here for you.
Divine....those are our little foothills behind me. I live in the East Bay, and we have hills all around us. Mostly all California is beautiful, except for the valley areas, which are pretty flat, but that's where they grow all the CA produce (whatever isn't being converted into housing tracts, that is.
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Has anyone ever been to one of those "Death Cafe" salon-like discussion groups? There are lots of them in the US now. They were started quite a while ago, and it's for people to get together and talk about death and dying.
Well, I went to my first one this last Sunday. Out of the almost 20 people there, I was the ONLY one with a terminal illness!!! I expected to meet at least one other person who was facing a life-ending Dx like me. When I was driving home, I wondered, "Gees, there are so many other things one could be doing on a nice Sunday afternoon. Don't these people have anything else better to do than go somewhere and talk about death?" I know every single one of us is going to die - - eventually - - but these people are all probably going to outlive me!
Don't get me wrong....I think these Death Cafes are actually a GOOD thing. Far too many people refuse to acknowledge that death actually exists and that we all WILL die. We went around the circle and introduced ourselves. Most people were there because they had lost someone or knew someone who lost someone and it's making them contemplate their own mortality. One person works in hospice (so do the 2 moderators), and another one said she "just goes for the snacks." (One of the moderators always makes something homemade, and she made this lovely walnut/raisin-filled Hungarian pastry - I had 2 pieces.) It reminded me of some NPR panel discussion as some of the comments were very well thought out and astute. Another person likened it to an old '70s style 'consciousness raising' group.
I tried to contribute as best I could w/out being a total "Debbie Downer," saying that I feel so isolated at times going thru this terminal illness. Most of my friends have been there for me, but a couple of my oldest ones have just stopped communicating. We discussed this at length at the gathering. Many people are just scared to death when one of their friends/associates gets this kind of Dx. Especially if they (like me) supposedly lived a healthy life. It's so very random, we agreed, because we all know people who smoke(d), drink/drank like fish and NEVER got cancer...hell, a lot of them made it to their 80's and died relatively peaceful deaths.
I may go again next quarter, but I won't keep going unless I get something constructive out of it - something that I don't already know instinctively.
And, once again, the same comments: "You don't look like you have cancer...you look so healthy...you're moving so well...you have such an upbeat attitude..." DH said it's enuf for me just to keep going and show these people what a real, functioning St IV person with extensive mets looks and sounds like. As hard and as painful as it is, we're not all "dead women walking," who look like we're already half in the grave. We STILL get out there and do stuff and engage with life (or death...in 'consciousness raising' groups).
Just thought I'd share. Hope you all have a great Holiday season, free of pain and debilatating SEs.
Lita
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Lita, never heard of these camps, but somehow I am not surprised they exist. It sounds like it was insightful for you in that it opened your mind to the types of people who want to give more serious thought to the subject, and on a nice day, no less. It seems like a good place for people to discuss death and dying, a safe place where one is not being judged for questioning this very real part of life. How often are these held? Once a quarter sounds like four times a year. If that is the case, why not go three more times, it may give you a better feel for the meetings. One more thing, as much as you learned from others, your personal experience being stage iv offered great insight to those who attended the meeting. I think that is valuable for people to hear what it is like from your perspective.0
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Welcome Dee, sorry you have to be here but you will meet a lot of friends who are incredibly caring ad helpful. I know a lot of us feel like we have been deserted by loved ones and it is so hurtful. Other times I feel like I am chasing them away too. Lita I was born in Fremont and lived in the Bay for years. I think Divine is right, you are doing a good thing just by showing people that Stage IV people still walk around and do normal things.
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Thanks...I probably will go a couple more tImes. They also have them in Oakland and San Francisco, but I prefer going to the closer one.
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Hmmm. Lita, that is interesting. I have been an advocate for the right to die in Washington, DC, showing up at council meetings, etc, and had the same experience. One time I was the only person with a terminal illness there. I finally started introducing myself as the "dying person." Right now DC has passed the right to die, which I'm very grateful for, but with incoming set up of federal government, that might be challenged. Sadly, DC does not have statehood or a right to vote, and our local laws can be changed by Congress. :-(
Susan
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I am a newbie, Thank you so much for the kind supportive words of encouragement, I shall try to remember when I am st a low poin
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are you on chemo for that
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I am new to this, can anyone tell me how to stay positive thru this, Dx St 4, mets to bone and liver
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I am new to this and was also Dx with mets stage 4 right off the bat, had so many plans going to Utah to see my daughters new home, she is coming home now instead, hoping to go to her wedding in Florida this March, so depressed not sure if I can deal this, have to work no choice, also don't know how will pay for all this, I am on taxotere, herception and terazatab sores in mouth and severe heartburn after 1st chemo thx can someone help m
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do you have a lot of se on these drugs? Just had my first chemo a week and 1/2 ago still nauseous sore mouth and heartburn I would appreciate the help
Thanks,
pauls
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Hi Pauls ( Paula?),
For most it takes time to deal with all the emotions of a stage IV dx. My best advice, and things are different for each of us, is to enjoy each day, even each hour and don't put your life on hold or put your foot in the grave even one minute before you have to. So many of us are living longer and better than we ever expected, so you never know. I am 5 years+ from my dx and wasted very little time in dwelling on being terminal. I do not know when I'll die so I keep planning on living. This probably won't last forever,,but I will keep on going and being happy until I can't. I also take Effexor daily and keep Ativan on hand to use as needed! Take care
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Great comments, Ex. I can't add anything else to add emotions-wise. As for SEs, I suggest looking each drug up on the internet...the data sheets usually list all the SEs, but keep in mind not everyone gets ALL of them. Every woman is different.
Hugs to everyone here.
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Yes Paula, ebrnxgrl has the best advice. One day, one hour at a time. Don't give all of your stuff away, don't curl up and give up, don't withdraw from life. Go out and live and revel in feeling good. You will have low moments which you deserve to indulge in. Then snap back and move on. There really is nothing else we can do and why not live all you can? I am 16 months out and most of my days now are pretty normal. Scans are stressful, changes too. But all in all not much has changed yet.
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Wiegp, plz look thru the forum for threads on herceptin and also having chemo in general. When I went thru that part of treatment, I found the chemo thread to be incrediboy supportive.
A stage iv diagnosis does knock you off your feet. It will take some time to reorganize your thoughts on everything in your life, because everything s affected by this. It is quite a shock. Prioritize and do only that which is necessary for the time being. Keep that wedding trip as a goal to look forward to. It is good incentive to move forward. Ask your doctor for antidepressant if necessary.
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DD1 applying touchups before DD2 walks down the aisle
Grandchildren anxiously awaiting their roles
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Me with the fellow who presided over the wedding ceremony.
I've got a few more pictures to track down and share but in the meantime, the wedding was beautiful and just perfect for DD2 and my new son-in-law.
They left on their honeymoon to Mexico just in time for sub-zero lows here
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A few more 
It started snowing and didn't stop for almost 24 hours
The lovely ladies.
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