My Husband, My Life, My Love, My Family, My Cancer
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Thanks to all for the food and pocket duty cinnamon buns blueberry muffins tea tacos nice mess. Uneventful putting and now I wait for results.
Mae congratulations on stable. Your team sounds amazing-results so fast.
Moth definitely find out what they want to do. Now I’m in your pocket for these calls.
Booboo I know what you mean. Food for thought treatments bs QOL. Deep sigh
Tanya
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I definitely can understand the qol vs treatments. My decisions on that would be based on being on my own here at home. I don't want to spend time in bed on my own or not be able to take care of the cats or myself. If I took something that did that, I would stop it and let nature take its course. Easier for me to say that because I do not have children or a spouse. I know my family would be alright though a bit sad if I pass. I want my life with as much qol as possible with me looking after myself.
Having said that, we all have different positions on qol vs treatment and what we would do and different reasons for each. Not a one size fits all.
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Friend tested positive for Covid. And a co-worker of his is also positive.
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Sorry to hear that candy, hope they are both going to be OK.
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Friend is 50 years old, like me. He said he is feeling pretty good, but his dad, age 78, has a loose cough. Will have to watch that.
He said the Health Dept called him today. He said they did not ask for names of people he has been around lately (for contact tracing). The news makes it sound like they would interview you and then call people and say they have been exposed. But I guess that is not what really happens. Too many positives to do that, not enough staff? Makes you wonder who you could possibly be around with Covid and you just do not know. Scary. 8 months into this Pandemic and we have no plan still. People refuse to wear masks. They still gather. Places still open. And not the contact tracing that needs to be done. Sad and stupid.
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Until people get with the program and more places are consistent about their messaging, the pandemic will continue. Other than my brother and their family, I have no close contact with people even though our area is allowed to have a small social bubble. I mostly am around people when I walk to a restaurant or grocery shop. I don't hang out with people every day or anything. Stay solo otherwise.
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Asking for pocket duty again. Spine MRI scheduled for Friday, hoping they don’t see lepto mets but won’t be terribly surprised, seems like when, not if, in my case. Either way, there are treatments.
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Mae,
In your pocket and holding your hand for your scan on Friday.
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Mae- Pocket duty for Friday.
Well got a call that we lost a long time member of our church--- I grew up with him as a leader in the church. He was in his early 70's. They think heart attack. Collapsed at home. Husband and father to 3 children and had grandchildren.
I am tired of death. I am tired of losing people to death. We have lost 3 faithful church members just this summer. And, with Covid, I cannot say my goodbyes by going to a funeral.
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Mara,
All of what we are going through has many different parts to it, and treatment type and length is very much an individual decision. It took me a very long time before I understood that I could actually question and then “ok" or “deny" the treatment plan proposed by my MO. That's more than anything what my earlier message was about.
I will certainly be one of those patients who decide to stop treatment due to side effects. I don't have children either, so the decision is a little easier for me because of that. My husband totally gets why I may stop treatment. He's seen firsthand how poor my QOL is when I'm in bed sick because of these toxic drugs. I also think it makes sense to try a reduced dose before moving on from a drug that has promise.
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That is a good idea to find out what happens with a reduced dose before stopping a working treatment. I definitely see the worth of that.
Mae, in your pocket for sure.
Candy, sorry to hear about the person at church.
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Mae,
Also reporting for pocket duty. I’ll bring the Reese’s PB cups.
Candy,
So sorry to hear about your church friends. Right now it is so hard to deal with that kind of news. We already feel scared and depressed over COVID. You certainly don’t need more bad news piled on. I will pray for peace for you my friend. If you need to vent, pm me and I’ll give you a call. Hugs.
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We got snow a few days ago with cold temps warming. Luckily, they got 11-18 inches in the fire zones. Didn't extinguish them, but slowed them down which is so good. My friend gets to go back to her home today. I agree about treatment vs QOL. I started feeling really bad with fatigue and no appetite over last weekend. I'm on Piqray now, and thought it was the problem. Called MO Monday and she agreed that I should stop a few days and then we'll discuss a dose reduction over Zoom. I feel much better each day I'm off it. Tomorrow is day 10 of our COVID quarantine after my husband's exposure; so far so good.
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Hi Tanya, Hope you’re well.
Mae~ definitely in for pocket duty. Sending hugs. Wear the sweater. Lots of pocket goers!!!
BooBoo~again today cried again about Tag. One commercial wrecks me. I’m such a heartbroken pathetic soul when it comes to my dogs. Thought about you and hoped you were doing good.
Mara~Hello sweet friend. Hope you had a. Nice day. It was raining here. I spent sometime with my DD. Which I love. Been a lot more lately. I love that. It’s times like that having cancer gets me the most. Is my kids. I won’t know the difference, but they will.
Waving to BevJen......Runor.... hey you. Sunshine. Hello hello. Rosie~ hope things are good. Good to see you. Goldens~. 🌹🌹hello do you too!! Elderberry~welcome back! Always nice to see you0 -
Candy, sorry your friend got COVID and very sorry for the passing of your church friend.
Mae, glad to hear stable scan. In your pocket for Friday spine MRI.
Tanya, sending best wishes for good results on your scans.
Moth, do call and find out why the RO referral. It frustrates me when they don't leave more complete information in a phone message. They just don't get the anxiety they can create.
Mara, I think it's you who loves beans & queso? That's all that sounds good to me and pretty much my diet albeit with melted cheese. I think the queso I have is too spicy for me to tolerate. Have to say that is so sweet you helped out that mom. I bet it made her & dd's day.
Hello to any I missed or who are reading along. I swear it's tough to keep up on this thread sometimes! Lol.
Edit: Mel, hugs for you and Tag.
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oh man, I'm so bad at knowing which thread I updated...realized i missed my living room "let's sit crooked and talk straight" peeps
My liver mets are continuing to shrink but my lung met has come back to life and grown in the last 8 weeks. The RO appt is to talk about a radiation trial to radiate that met. Unfortunately it would mean coming off my current trial and right now that's the only way to get immunotherapy here so my MO is torn. She's trying to get Roche to give me compassionate access to it.
Overall I'm actually still considered stable because total tumor burden hasn't exceeded the RECIST criteria but this lung met is problematic as it's large. We thought it was all necrotic but nope....
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Oh Mae - so sorry - but hoping for positive results. I'm holding you in my thoughts & will be holding your hand virtually Friday.
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Bliss~Thank you for the kind words Some days life just sucks. No Matter what. It just happens. Sucks. Hope you're well. Went back and noticed you haven’t been feeling good on piqray. I’m sorry. I hope a dose reduction is what the ticket is. Don’t want you to Not be on treatment !
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Moth~I hope You get the compassionate access like you mentioned I hope it works and kicks some met ass. I’ll be thinking of you.
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Thanks, Mel. I'm feeling better each day, but just hope the reduction makes me feel less crappy, and yes, does it's job! Hugs.
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Bliss,
I tried Piqray and got so sick my MO took me off of it. My current MO won’t even prescribe it because the couple of patients she tried it on got very sick too. So you are not alone when it comes to difficulty with that one. Hoping the very best for you whatever the outcome.
Mel, big hugs. I’ve been very depressed this week, which I expected. I loved that crazy dog so much. But I prayed that God would take him before me....he was my boy. So I’m grateful that he is no longer suffering and is on the Rainbow bridge with Tag. We get to love them for a relatively short time, but man, what they give us in return lasts a lifetime.
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Morning ladies.
I love you all here.
Booboo- Thank you so much, my friend. I cried when I read your post to me about "praying for peace for me". And offering to talk. So much caring and compassion here.
I am ok, I think. Just a lot to deal with anymore. The cancer and all that brings about. Then Covid. Normal illnesses and death. Sometimes it gets to be too much.
My thoughts are with you all today. What we have here is special.
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We are sometimes given too many things at the same time to deal with and it certainly can be hard to deal with. No doubt about it. For me, it was dealing with My mom's death, parting ways with my younger brother at the same time, dealing with household bills and my own bills until the condo got sold. My older DB, SIL, their kids and DB's in laws all helped in hauling out the stuff that had to be donated and then they found the apartment for me, got the house sold and set things up so I could keep my disability as well. Even though I participated in that, I could only deal with one thing at a time. One box at a time. That is the only way I can deal with things. It was the same with the grief. At different times, I grieved for the loss of my younger brother, his son and grandson but the brother was toxic. Better to avoid. That was one thing and then finally get to the point where I was not crying my heart out for Mom. I have mostly got to that point and if I feel sad, I just watch her birthday video of her laughing at our really bad singing and allow it to make me cry and move on afterword.
I agree Candy, too many things going on at the same time for so many of us here, I am so glad we all have each other to help us get through the tough stuff in life, pandemic and cancer.
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Good morning all!
Mel - go ahead and keep crying. When you lose something you love deeply, there is much grief. How is the other pup doing?
Mae - more pocket duty. And if I forget to say something for anyone else needing it, I’m there for pocket duty too!!!
I’m blessed that after just after 14 months dx for MBC I’m stable with no progression. Thank you Lord! I pray that all of you will find and keepthat sweet spot as well❣️
I finally had my radio frequency nerve ablation yesterday. I had what the doc considered extensive treatment (burned 8 areas which required 3 needles per burn) and was advised that it will take 4-8 weeks b4 I can expect ultimate results. In the meantime lots of ice packs to back and tv time. May need to download some books. This morning I’m having more muscle soreness than actual pain. Feel like I was hauling 50# bags of dog food home from the store🤣.
Expecting sunshine today here in the Ocooch Mountains of Southwest Wisconsin. Sending some to you to brighten your day☀️☀️0 -
Enjoy the sunshine and rest up Goldens. Glad it is more of a muscle soreness than pain for you. When nestled in a comfortable chair or bed, you may not feel it too much.
Not doing much over here today. It is gray and cloudy. Will do a few shorter walks and may go downtown to pick up a new smart card for riding the bus. I lost mine and someone did get to use it. I hope they at least were a needy person so I can imagine those rides were helpful. Also doing more surveys for cash, want to get some groceries tonight without using my money, just the survey money.
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So I just had my first Palliative Care Zoom appt. Let me explain.
I posted on here that my local cancer center (rural) does not offer Palliative Care. I moved to a larger cancer center-- University affiliated-- and at my appt in Sept I asked MO if they have Palliative Care for the patients. She said No. I was surprised and disappointed. I saw a flyer for a virtual health fair set for the first week of Oct. I logged on to the health fair and saw that they offer free (not billed to insurance) counseling services for the cancer patients. I scheduled appt (Zoom too). The counselor said that it is 8-10 sessions. I said I wanted something long term like Palliative Care. She said "we have Palliative Care". She gave me a phone number. I called and made todays appt (Zoom).
So today I met with a doctor, a Social worker, and someone else? Me and 3 others. I told my story and kind of what I was looking for. I said I have been stable for 3 years and on first line therapy so I have learned to adapt. Depression at times, but still up and going. Side effects of meds, but dealing with it. Good appt but still unsure of what really they will do. I am to see them again in 3 months. Having next scan in 2 months so we can see if I have progression or treatment change. They did say they are here for the long haul and will work with me as things change.
I am happy I have this in my arsenal now, but hoping I won't need them any time soon.
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I am glad they will be there if needed but I can definitely agree that I would not want you to need them soon.
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As I have thought about my appt today, I really don't feel I have a handle on what they will do for me. I mean, I am stable--so far-- and I do not see them again for 3 months. Today seemed to be a meet and greet and I am now thinking I really do not understand it all. There was a doctor, but what is her role? There was a Social worker and she asked about a living will. Then there was someone else, I cannot remember her title. Seems that there really isn't much to do until things get worse with the cancer. Is that the way it should be???? I think I will call them tomorrow and ask some more questions. I feel confused after my today's appt.
Mel- You said you have a Palliative Care team. Does my description sound about right? Just establish a relationship but not really do much until things get worse?
Maybe I am just tired tonight and not thinking straight.
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my palliative care doc houses all of my medicine and side effects and they are with you until you progress to need other assistance, they help you determine care and plan with you and your oncologist about going forward. They help with qol issues now. Helping you do the best you can with their help when the time comes and The patient should Worsen. Then they let you know options recommendation. They work with your family. I really adored my One doctor, she left the group this year. I was gutted. You build these relationships with these people. Then poof they Move on. Mine have helped me so much
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Candy did you tell them about the pain that really is not being treated very well??
You wrote. “I said I have been stable for 3 years and on first line therapy so I have learned to adapt. Depression at times, but still up and going. Side effects of meds, but dealing with it.“ It sounds like you minimized the problems and tried to show you are doing great all things considered? Perhaps they can improve on adapt, still going, and deal with it — if you express that you hope there is room for improvement in your quality of life and would like help?
P.S. Good for you, finding resources. Can you participate in both the counseling and the palliative services?
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