Choices

Hello Ladies!

So tomorrow starts my first round of 10 rounds of radiation to my sacrum. I spent the last few days wrestling over my emotions about this whole thing. TNBC, when it metastasizes can spread to the brain, liver, bone, and lungs. I have managed to hit two out of these four spots. It has been a little rough for me. Metastatic TNBC has an extremely bad prognosis and I find myself having landed in the middle of it all:

"...For triple-negative breast cancer patients with bone metastasis, the median overall survival (OS) was only 5.5 months after detection. The 3- and 5-year survival rates of BC patients with bone metastasis were 25% and 13%, respectively."

The article continues with the acknowledgement that therapies can change the prognosis:

"However, with the development of hormone or bone-targeted drug therapies, BC patients including metastatic BC patients experienced a better prognosis. Additionally, surgery or radiotherapy for patients with bone metastasis can provide effective local control and improve quality of life, especially for patients with pathologic fractures."

So... For triple negatives hormone therapies do not work. I left this in for our readers. Bone targeting drug therapy is used to strengthen the bones but also has some nasty side effects and I personally would be wary of trying something like that. Radiotherapy, or radiation is what I will be doing. Pathological fractures is what happens when cancer metastasizes to the bone and weakens it. You could be doing something you normally do and suddenly experience a fracture. Claoh I am concerned about this for you. Of course yours is not advanced to that stage and may never advance to that stage, but still I wanted to give you a heads up.

All in all with the research that I've done it seems that nobody knows exactly how long someone can live with bone metastases. I have seen other info saying 19 to 22 months. In that amount of time new treatments can come out that will change the data to even longer survival rates.

Okay enough techie talk lol. The simulation Friday was simply being run through a CAT scan and then having marks drawn on my belly and sides so that they can line up to those points again. They added a permanent tattoo consisting of a little dot on a couple of them so that when the marks wash off they will still have the points of reference required to continue the treatment. My first treatment tomorrow shouldn't be too bad. Usually in radiation you become more tired as it goes along. There's also a chance of radiation "sunburn" so to speak but I use a cream called CeraVe after each radiation treatment to keep from burning and peeling. I used it on my last radiation for my breast cancer in 2013 and it worked well. I only ended up with a deep tan. That's why I call radiation my targeted tanning treatment lol.

Marla I am so glad to hear that you found someone in your support group that is close to the treatment you are going through! It was a little rough for you at first but it looks like you may have a friend that you can talk to or go out to coffee with. That's so important when you're going through treatments. I was curious about your quote from Ray Bradbury - I assume that you've read some of his books? I think my favorite one was Fahrenheit 451. I was reading his books back when I was reading other books like Animal Farm. That was a long time ago lol. But still it had enough of an effect on me that I still remember quite a bit of it. I think about it when I see these AI robots that are coming out. Especially the ones that are robot dogs.

Claoh I hope you are enjoying your time with your friend. Did you ever find out what was going on with that spot on your breast? It seems as we travel this road of choices each one of us, you, Marla and myself are putting together a legacy for others to read. I still think it would be nice if others jumped on board. It wouldn't have to be triple negative. Just other people and their choices and their outcomes.

Dang I write long blogs!

All right ladies, I need to get ready to go out to Cleveland tonight. We will be staying in a hotel so that I can get to the early appointments tomorrow. Y'all have a very blessed day! Marla keep up with that creativeness! Hugs

Info from:

https://atm.amegroups.org/article/view/35943/html#:~:text=The%203%2D%20and%205%2Dyear%20survival%20rates%20of%20BC%20patients,among%20triple%2Dnegative%20BC%20patients.

Hello ladies!

I spent the day mostly sleeping. I've been doing that a lot lately. I find it odd because I haven't had any treatments but I am very tired. I keep thinking that maybe it's because my body is fighting this cancer that is in my breast and my lymphatic system and now in my sacrum. It makes it very hard to sit and I usually end up with putting an ice block on that area (tailbone) to help with the pain. They told me that the radiation treatments will take away a lot of the pain from the cancer in my sacrum. They also told me that the radiation is to stop the cancer growth but not to cure it. I will be starting back on chemo October 30th. I made sure that all my nausea meds were re-uped so I guess I am as ready as I ever will be. Marla, do you know how many treatments you have left? I know this has been really hard on you. My heart goes out to you for all the side effects you have from chemo.

Well ladies, it looks like we are getting popular. The American Cancer Society has taken notice of our blog and is looking at possibly running it through an AI to create a book on triple negative and the need for research. Personally I am grateful that societies and others are taking notice of triple negative and the need to do more research on it to possibly come up with a cure. I think if we can help with this it would be awesome although I am a little gun shy about it lol. I also think that allowing people to read about our personal choices and the effect it has on us is important, both now and as a legacy. It would also be nice if our partners got involved and added their side of how they are or are not handling the care requirements for this. I know that my husband is going through a lot of anger and frustration over this. That's the reason we're going to be talking to a breast psychologist. This is someone who understands breast cancer and can talk to us about dealing with triple negative.

That's it for now. I'm really looking forward to the two of you adding to this blog. I miss you both when you're not on it.

Hugs

Hello ladies!

Marla I love you jokes! What a great idea to add levity to this conversation! I can't wait to hear what the results are from the ultrasound on the 11th. I would think it would have shrunk but that's just me. What kind of surgery are you going to have done? Are you just doing a lumpectomy or a mastectomy or a double mastectomy? I had a lumpectomy done on my first breast cancer in 2013. They checked the sentinel node but it was clear. It was a long way away from what I am dealing with today. Everyone thought it was odd that I would have two different types of breast cancer also.

So here's what's going on with the American Cancer Society. My daughter is opening her coffee shop, the Brick and Mortar , on the 21st of this month in Columbus, Georgia. Instead of having a ribbon cutting event she has contacted the American Cancer Society to be an integral part of her opening. Like I said instead of having a ribbon cutting event she will be handing out pink ribbons to customers. There will also be speeches on breast cancer and specifically on her mom's (my) triple negative cancer. There will be also be a lot of other events for this including a Relay for Life. The American Cancer Society was curious about our blog so I sent the link to them so that they can read it. They are wanting to convert it into a book that people can buy. The proceeds from this will go to cancer research, and specifically triple negative cancer research. So I guess the three of us will be contacted to make sure it is all right with each of us before they publish. Like I said, for me I think it's great that they're doing this because they're just isn't anything out there about triple negative. Seeing our different choices will open up the realization that more information needs to be made available. People will be able to see what our different diagnosis were as well as the choices we made and what happens with those choices. So I guess you could say Claoh's blog was a godsend to us and others.

I don't know much about Curry but I have heard that Cayenne and other hot peppers have Capstan in them which is what makes the pepper hot but also I can see where that may actually help with triple negative. I'm just not sure I could do anything hot, especially when my mouth and my tongue feel like they're burning already. Usually that comes with mouth ulcers but I don't have any of those. This was just another side effect of chemo. When I restart chemo on the 30th I will continue to use the drugs that I used before (which are listed somewhere back in the blog). When I didn't have chemo for a while I asked my oncologist since all of this is maintenance only if they were giving up on me. ,"Absolutely not" was her answer. In fact we would have started the chemo sooner but she wants to get through the 10 treatments of radiation before we start chemo again. There will be a week's rest between the two of them to give me time to recover a little bit. I do get tired easily now and I'm sure she's keeping an eye on that as well.

Claoh, Marla and I miss you and we hope everything is okay and that you had fun with your friends.

Okay my turn to tell a joke. What did the teacher do when his student wrote a report on the history of cheese?

He grated it.

I know, I know boo hiss and with that I'm signing off. Y'all have a blessed day! Hugs

I have to say that I love the Cinderella joke! That made me laugh!

Sadie, yes I love Ray Bradbury's books, read them when I was in high school and beyond. I like his subjects and the way he writes. I can not remember which book has the subject of his tennis shoes and how fast and light they felt. Maybe you remember?

Tomorrow is chemo #4 so I might be off for a few days. My computer was hacked and the computer repair guys fixed it remotely. What a pain!

Today is a lovely day, but very very warm. It is very strange not going anywhere or having plans to go anywhere or do anything. But I am feeling really good for the last 3 days and enjoying it a great deal. I sit outside each day and enjoy all of the plants and flowers. We have a great deal of mosquitos so I have to be careful not to stay too long.

I do have the burning mouth, tongue, and very hot hands and feet. The doctor said "Side effects"

I don't even have a joke, so sad huh?

talk soon, take care ladies, and Sadie praying that everything goes well with your radiation treatments

Good morning to all! This is Don aka Doc Roc. My better half is Pat aka Sadie. My wife had asked me last night to write on this blog and to encourage spouses or significant others or really anyone who is affected by this miserable disease. The one thing I will emphasize, is you are not alone and there are others who feel exactly like you do. I have no answers whatsoever but I am here to listen, to encourage, and to empathize. I want to take a few moments to let everyone know my emotions and my feelings through this. First being a man my first reaction after finding out Pat's diagnosis was to fix it, that's what us men do, we fix things. The bottom line is I can't fix this, I'm helpless. Absolutely the worst feeling in the world.

My wife asked me last night if I would please watch my language :-) I will do that to a point, but I also need to be true to my feelings and to let others know that it's okay to have these feelings and these emotions.

Pat and I have been married for over 20 years, and the thought of losing her is unbearable. I have been a musician / drummer since my teens. At 62 I just formed a new rock band and I am trying to build my stamina enough to keep up with the younger guys in the band :-) my thoughts and emotions are best summed up in the music I write and warning, there is some course language in these lyrics but this is truly me and how I feel. I am bitterly saddened, I am very angry and I am grateful to have a way to get those feelings and emotions out. Below is most of the lyrics that I have written in the last few months, not complete songs yet but they are being worked on.

Swimming in the depths of chaos, drowning in the flood of pain.

Misery is the undertow, seems everyday is the same.

F*** you and your sick diseases, far too long you've walked as you please.

MF that's some nerve you got, really thinking you have a second shot.

What do you expect from me, I am just a man.

Put the f****** weight of the world in my hands. I'll drop the ball, I'll let it all fall, and bury them in the sand.

I cannot stand alone, I'm broke into the bone.

Only just living to die, watching the world turn as I stand silently by. Is there a hope in the silence or an idle cry, trying to piece together where it all went wrong.

Was the past the truth or just one big con.

Look at me, I'm smoking just to burn. Look at me I'm broken to the point of no return. Not quite sure why you let her burn, not quite sure what the lessons learned.

Won't you take the time to whisper the lessons learned.

Is it to kill me slowly in quiet despair. Or is it to crush me into pieces no emotions, just a stare.

Dying to live with so much to give where's the healing. No more f****** stealing. Living to die, seems such a far cry from what the promise was supposed to be. So guess I just pack it in and wallow in my sin, just waiting for the final scene. What's it all about, this supposed good life

Morning y'all!

Guess I can't say ladies anymore since our new visitor is a male lol. Don those were really great lyrics, brought tears to my eyes as you spoke of what you personally were going through. And I also want to thank you for keeping your language down to a dull roar LOL. I'm curious to see how the other partners in our lives feel. It would be nice to hear from them also and to get their perspective on dealing with this. Like I said before, too often the caregivers are put in the shadow and I'd like to bring them out in this blog so that people understand that it is tough for them also.

Claoh, was your nurse okay with you rotating between the opioid and the tylenol? Especially if the opioid contains Tylenol in it. I know my palliative care doctor made me step away from any Tylenol or Advil with the use of my pain meds. I don't know the exact reason why, I just know he was pretty adamant about it. Maybe next time I see him I will ask.

Marla, I know you're trying to get through the chemo effects right now but you are missed and I can't wait to hear from you again! Chemo is rough. You will have to let us know how you did with your first dose of taxotere. It sounds like they're using a lot stronger chemo on you than what you had before. When I start the next go round of chemo after my radiation mine will be the same as what it was before. October 26th I have another echo just to make sure that there aren't any changes there. I know that in my chemo in 2013 they did a second echo towards the end of the chemo. I asked them why they did that and they said that a lot of people come in to chemo with a 70 to 80% efficiency on their heart and that when they're done with chemo they have a lower efficiency. Mine was reduced down to about 60% but the lady there said she had seen some people that had a reduction down to 20% from the chemo. Sometimes it makes you wonder what the benefits of chemo is. For you Marla it gives you a chance to be free from TNBC as yours did not metastasize. For me, the chemo along with the radiation and gamma knife surgery are what is extending my life since I am a stage 4 TNBC. I do agree with you Marla, I think the vaccine to stop recurrence of this nasty cancer will come out just about the time you will be eligible for it. That does my hear glad to hear news like that!

Okay y'all enough of the long blog LOL. Y'all be blessed and ladies, talk to your partners to see if they want to join. I think it would be good for all of them to be able to talk with someone who is going through the same thing that they are.

You all have a blessed day! Hugs

Claoh

So many tears as I read what you wrote. I feel your pain, you're uncertainty and yet your faith is still there. It may waver but it's never gone. You are truly a strong woman!

I think about the machines I'm on. All to extend a life., none to cure. it's ike God is letting us down slowly, an advanced warning to let us know our time is near. One year, 2 years, perhaps even 3 years although my view is dim for something that long.

My ability to be mobile has become less and less. Between the chemo-induced RA and the chemo-induced peripheral neuropathy my ability to walk has decreased to the point where this past week I had my primary care doctor order me a wheelchair. Is this quality of life? I used to love hiking and rock climbing and horseback riding and canoeing. Now all this has been taken away from me. Is this quality of life? Perhaps that's how it shall be, that all joys will be taken away one by one leaving the world dull to me. Yet still, my husband' Don is a great joy to me as is my daughter Heather. I suppose that it is a good thing that not all joys will be taken away from me. In this, I see quality of life, I see love.

The radiation treatments are exhausting. I was hoping to go through this first week a little bit better than I fared. One more this week and five more next week and I will be done with those treatments. I will get a week to recuperate and then I will be back on chemo. Somewhere in the near future I will be getting another PET scan to see where the next pop up of cancer may be in my body. Like I said, this is all whack-a-mole but I wonder if at some point that it really blows up. For now I will be grateful there is only small pop-ups on my body. They will continue to treat me to extend my life.

Is this quality of life?

Pennsylvania has a waiver program that pays for In-Home Care. My primary care doctor had everything filled out except for one thing. It was a question as to whether or not I would need to be put in a nursing home if anything happened to Don. Sadly, that answer is yes. I have not been able to make my own meals for the better part of a year now. Don has been taking care of all my meals as well as cleaning the house and doing all the laundry. This is such a strain on him. Between all the chores and the fact that the woman he loves is slowly dying is really too much for him at times. His anger is understandable. He hates seeing me go through pain and sickness, the nausea and everything else that goes with these treatments. Each treatment requires him to drive 3 hours to the Cleveland Clinic. He does all the driving as I cannot due to my chemo-induced peripheral neuropathy. No Claoh, he wouldn't curse you. He totally understands what you are saying. We both do, and it tears our hearts to hear your open honesty about what is going on in your life. In fact I barely made it through the last paragraph, I was crying so hard that I couldn't see the writing.

So this is our lives. Is there quality of life in any of this? I find the answer to be yes, and it is held in the fact that there is love. As we love one another regardless of anything else love is something all of us share and thus it defines our quality of life. Remember this, remember the love when it seems like everything else is against you and you end up in a dark place. Love shines brighter than all these things. And that is what I define as true quality of life.

Pat

I am here now, I have had a very rough time this last week with Chemo #4. I had my breast ultrasound the other day and will go to the doctor today to see what she says. Will update you all.

To answer your question about quality of life. I have seen so much of life as a nursing teacher for over 30 years, I have to agree with you that Love is the quality of life. I see it in my husband as he cares for me. My children and grandchildren are good with phone calls every week and sometimes more often. Their spirits brighten my day, I remember when I was my mother's spirit and my children's spirits to brighten their days and lives. It is all just a circle of life. I witnessed so much from working in nursing homes, I guess that is what I draw on. However, at this point, I am able to get around and do almost everything that does not tire me out and I have a light at the end of my tunnel. Fingers crossed that by May this will be over, I will have hair again and hopefully never have TNBC again or anywhere else! I will have seen my grandchildren and great-grandchildren through some of their lives so that they will remember me. My legacy.

Sorry to write so much, but that is what I feel about the future.

But I could have a stroke or heart attack along the way! Who knows what the future holds for all of us!

Take care my friends and talk soon! stay on the board!