Choices

Sadiej

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.

Sadiej

Hello ladies!

So I didn't have my radiation as planned. My doctor who is out of office this week wants to wait until he gets back before the first treatment.

I had a good conversation with my oncologist about all of this. I really do appreciate her honesty and her willingness to express herself. Yes I was correct when I said that both the breast cancer as well as the brain and sacrum cancer are incurable but that they have the tools to maintain it so it doesn't get out of hand as well as allow me to have a quality of life that I would not otherwise have. She also recommended that I speak with a breast psychologist which you got to admit makes you kind of laugh when you think about a psychologist sitting down and saying "hi breast! I see you're taking your lumps!" LOL. Okay I admit that was bad. But it was funny. :-)

Marla you are mighty quiet. Is everything okay? I'm hoping that my comments don't bother you because those comments have stage four which you definitely don't have. I am very grateful that you don't also.

I'm expecting to hear from Claoh pretty soon too. It's quiet on these boards when I'm the only one talking.

That's it for me ladies. Short and sweet. Have a good night. Hugs

Sadiej

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

marlakeeth

Good morning,

Thank you Sadie for checking in on me! The last few days I have been feeling really okay and enjoying feeling well.

My brother came over to see me yesterday and he said he was reading an article about TNBC and Cleveland Clinical trials. It was written by a woman who is in the phase 1 trial, saying that she had been cancer-free for 2 years before she could get in the trial. The FDA was fast-tracking the vaccine so maybe in 3-5 years would be available to the public. If things go as we are thinking, I might be in the right time window for it.

"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" This is interesting how did you receive this information?

I have been going to the support group on Wednesdays for 1 1/2 hours on Zoom and listening to others and what they are experiencing. Although everyone seems to have a different treatment plan, we all seem to have the same side effects. One young lady is saying that curry and cayenne pepper in her food have helped her a lot with the nausea. Interesting huh?

I do not have much news, my next Chemo is Monday the 9th, and the ultrasound is on Wednesday the 11th to see if the tumor has shrunk. Then I start the next 4 cycles of Taxotere, so I should have these completed in February 2024. Then 4 weeks off and then surgery. I can't remember if radiation is in the future, but I just want to kill it all! Even though I am finding out that it will come back somewhere sometime. Not a great thought.

But glad that you are here and hopefully are in the radiation window now.

Here is the joke I leave you with, How do you repair a broken pizza?

With tomato paste!

take care, everyone.

Sadiej

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

claoh

Hey gals, just got back from the trip to my childhood best friend. It was so good to reconnect after 30+ years. Had lots of laughs and recollections. It was curious that we both had recollections the other didn't remember, but much more that we shared and laughed about. Packed a lot into two solid days and would love to get together again in the new year some time.

Just before I left, my nurse/doctor ordered two new pills for me to get me off so much Tylenol and Advil. It is quite a jump as one is a low dose morphine which they hope will keep the pain away for two twelve hour periods. The other is one I can take between the morphine if I need to. I plan to start this evening now that I am at home in my own surroundings in case I have side effects from the morphine.

I wore my little plastic sleeve necklace with the DNR and contact information the whole time I was on my trip. Gives me peace of mind that my wishes will be followed if something were to happen. I plan to wear it the three days next week while my husband will be out of town also. My friend thought it was a good idea.

Still hoping to see the doctor about the red raised area which is a major source of pain. Will follow up with my nurse on that.

Sadie, when is your doctor back in the office and you plan to start the radiation. Does that mean a trip to the Cleveland Clinic every week?

Marla, sounds like you like the zoom meeting. Are you also going to the in person one, or will zoom replace that?

That is awesome news about the interest of the ACS towards our blog. Curious how AI is involved?

My joke: Why was Cinderella so bad at soccer? She kept running away from the ball!

Till next post.......Love ya!

marlakeeth

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

Sadiej

Hi ladies!

Claoh so glad to hear from you and I'm really glad that you had such a great time with your friend! It poses a great question as to when we all reached out to our childhood friends.

I finally decided to check on DNR jewelry and googled DNR medical necklace. The search came up with all kinds of necklaces and bracelets. Some of them are really pretty. I think I may get myself a necklace as a bracelet with slip off my hand. That's such a good idea! I know you've talked about it before and I really think I need to get myself one now.

Claoh, this is what I know about your two new meds. Not that I'm an expert but I am familiar with the meds because my palliative care doctor has also put me on them so I wasn't doing so much Advil and Tylenol, just like you were. The extended release morphine helps to keep a steady dose of pain med in your system for 12 hours. The other medicine is used for spikes or if you need a little bit more because of pain levels. They start you out with the lowest dose possible and adjust accordingly depending upon your pain. That is something the CDC recommends. They also have recommendations for taking you off this type of medicine. You cannot just stop the medicine without tapering down because of side effects. Some of those side effects can be pretty nasty but I would not be afraid to take the morphine and other pain meds just because of that. These medicines are very helpful and keep you from having the kidney damage that you would get from taking too much Advil or Tylenol.

So starting tomorrow I begin my radiation treatments, one per day, for this week and next week for a total of 10 treatments. I have been sleeping a lot and I hope that I am caught up enough in my sleep that I can get through this without any major issues such as exhaustion. I don't see any problems with the first week but it would be the second week when I start getting dragged down from the treatments. Not saying that I won't be tired the first week but it won't be as bad as the second week. My husband is doing a great job of taking care of me and making sure that I don't have to deal with any worries other than getting through this treatment. It's a lot on him. I asked him last night if he would like to add to this blog as seeing these choices and paths as a caretaker. I know it's really tough for him to talk about it but I think that it will be helpful in the long run, both for him and others that are going through the same thing he is.

Man I write long blogs!

Marla, I believe the book that you were thinking about was Ray Bradbury's "Dandelion Wine". Getting new sneakers was the best wasn't it? They did seem magical when you first put them on. I know you won't get this info right away because of the chemo you're taking. I hope you're feeling better soon and can join us again. I love your sense of humor!

Hugs all!

DocRoc

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

claoh

Hey there gals, glad to hear from you both.

Marla, do the burning mouth and tongue affect your eating?

Sadie, are you going to Cleveland Clinic for radiation or staying closer to home?

Well, I took the morphine two times and told my nurse I'm not in. Took first at night, no issues. Took second in the morning and within an hour had nausea and dizziness. Later that morning brought up my breakfast. Still spent afternoon in and out of slumber with dizziness and less nausea. Honestly, I can't imagine that you two go through this countless days, but that is one of the reasons I choose my path. You are the true warriors!!!

I don't mind the lower strength opioid that was prescribed at the same time as the morphine and will rotate between that and the Tylenol and Advil. Nurse told me to be sure I take a snack with each one. For now, that is my regimen.

On the DNR necklace I bought a pack of two plastic cases and then bought a nice plain silver necklace from walmart as I thought the lanyard was too thick and noticeable. Mainly because others in the community are not aware of my cancer yet so didn't want them asking questions. : ) This way I am carrying the actual DNR statement from the doctor that enforces my decision. Not sure just DNR on a necklace will suffice.

Sadie, what was your husband's response to being on a blog?

Take care my friends, and hope to see you both soon.

Love ya and want you to know you are center to my life even though we've never actually met.

claoh

Don, glad to see you entered the blog. My heart is broken as I read your lyrics and feel your despair. It is sad but good to see your side of this issue. Through it all you have been a rock for Pat and when she writes of you I can feel the love and thankfulness she has for/with you.

DocRoc

Claoh,

Glad to be here. Definitely a very emotional time for the both of us. Thank you for the welcome.

Sadiej

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

Sadiej

Let's talk Quality of Life. So Far, my trip has been less than perfect (understatement) which brought the realization that we haven't talked about it.

So what is Quality of Life for you?

Just thought I'd throw it out there to see what your answers would be.

Talk to y'all later. Still getting radiation treatments, which I will tell you about when I get back.

Hugs

claoh

Sadie, I have thought of asking that question many times.

As I mentioned before, when I was sick one day, it gave me new perspective on what you and Marla are going through on a regular basis. That was a big reason I choose the road I am on. Quality of life for me is living each day as usual, without feeling ill at home. I could not face almost a year of recommended treatment, even if it meant my time on Earth would be less.

My faith is also strong in my assurance I will live on in another existence where there will be no pain and only good.

Perhaps if I didn't have triple neg, my choice would have been different. After doing extensive study and finding triple neg very aggressive, less responsive to chemo (and older age also less responsive), and resilient to return that reinforced my decision. I've said it before also, I don't want to go through this 2 times, as it often reoccurs.

I have no regrets and am positive I will be in great pain sometime down the road but will take these present days with gratitude.

So to sum it up, I want to take the good days as long as possible; being my age I have lived a wonderful life and am satisfied without seeking to prolong it knowing I am on the down slope and other ailments will arise with age; and I will only move from this Earth to a better existence.

I have felt your thoughts leading to this topic the last couple of weeks. You have fought so hard and yet new battles arise. My message is not "hang in there" as much as "find peace and direction in your inner soul." We as individuals are the only ones who can decide the road we take. I can also hear your husband cursing me now if he reads this.

We pray for each other often, but my prayer for you is peace of mind and strength to go down the path that gives you peace and direction. Like all of us, either road we travel is through pain and yes that does SUCK.

claoh

Good Morning Sadie, Ron and Marla.

I think the last couple of postings shook me more than expected. Had a couple bouts of tears and reflection last night. Even though I don't have "regrets" I do have great sorrow the last week. I think mainly feeling that I've gone up a notch in realizing what lies ahead.

I think it started with my reaction to the mild morphine. I've held that out as the drug to alleviate my pain at the end and now find the lowest dose was not receptive by my body. Haven't talked with nurse or doctor yet, but that is definitely on my list to do so. Talking with and seeing the doctor are also on my list. The protruding lump in my breast is still of concern and hope to prevent it from becoming ulcerated and an open wound. Is that possible?

Even my devotions the last couple of days hit me hard as they stated how God cares for us in our suffering and answers our prayers, which I struggled with. I believe we may all go through these times where we ask "Really!, why is this happening then!" I would love to have a miracle and have this disappear, but also do lean on Him to see me through.

We are mere humans who love our lives on Earth and our families and it is normal to cry and be upset when our lives are disrupted, and scared. Then, lean back and say there is more to this existence than our years on Earth, and suffering may be a part of that. Even with all life's glory there is a dark side to existence on this planet, and we unfortunately are experiencing some of that.

All this to say again, find peace on your path, lean into faith in God even through the terrible, tough times.

I will strive to practice what I preach.

Sadiej

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

Sadiej

Claoh and Marla - are you two okay?

Marla, I'm waiting to hear what your answer is to what you think is quality of life.

marlakeeth

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!

Sadiej

Morning ladies and gents!

Marla, you and Claoh both wrote great answers to that question on quality of life! I guess it's something that we don't really think about until we end up in a position such as ours.

Marla, I'm really concerned for you. I would think that your oncologist could either reduce your chemo (like my oncologist did for me) or give you better meds to handle the after effects of chemo. I'm also looking forward to what your ultrasound results were. I would think that the mass has shrunk with all the chemo that you have been taking.

Marla, I find it very interesting and comforting to know that you have had 30 years of teaching nursing. I think that helps me, selfishly, to be able to ask you questions as I go along this path.

Claoh how are you doing? I know your answer was very tough on you but I still believe that you are a very strong warrior. I covet your prayers as I'm sure all of us do on this board. Thank you Claoh. At times like these I can really use them as I am sure you also can use our prayers for you. I also wanted to let you know that there are a lot more medicines than just morphine out there. They have both medicines and patches available for us and I'm sure they will find one that will work for you.

As for me, I am beyond exhausted. I am also in a lot of pain even with my pain meds that are made available to me. I have two more radiation treatments to go and then I will have those behind me. My husband is just as exhausted as I am and it's all he can do to take care of me and the everyday chores that the house requires. We are both not sure where we will get the strength to be able to go through these last two treatments but I am sure it will be there when we need it. As for me, I sleep anywhere I can, whether it's in the car or in the waiting room or just sitting in my chair at home. It's not by my choice either. I just all the sudden fall asleep. My tailbone and lower back are both screaming at me from the pain. But I'll get through this just like everything else.

All right y'all, I'm going to sign off for now. Be blessed and have a good day... Something we all deserve. Hugs