Choices

Sadiej

Marlakeeth you look great in that short haircut! I too cut my hair back to about 3 in but I didn't have any pain like you said you were getting. I wonder what that's from? Last chemo I ended up with the clumps in the shower so this time I am ready for my hair to fall out. It hasn't fallen out yet, what it has done it's gotten curlier and curlier. I used to have straight hair! I actually have been thinking about cutting mine back to 1/2 in and I think when I do you will have to show me how to upload a picture. :-)

Marla, I'm really sorry about your friend's daughter. Hearing stuff like that makes me angry. The fact that cancer can snuff out a young life... anyway please give your friend our condolences. It has to be so hard to lose a child to cancer. I couldn't even imagine it.

Claoh, where do you find how many people are looking at our link? I am glad to see others who may be curious. Like Marla, I would like to see more people on this board also. I think it would add some good experiences so the others can read and make their own choices. (Had to think about "good" in the last sentence, because if I had my choice none of us would be here)

Claoh, I agree with withdrawal symptoms when nobody's on this board LOL. I keep checking throughout the day just to see if anybody posted. At least I keep checking when I'm not sleeping, I'll put it that way. :-)

But as Marla said, PMA and smile. I like to keep my little saying nearby so I can read it a dozen times a day: "Laugh louder harder longer, that we may enjoy our lives together, whatever moment that may be. " It was just something I came up with on the fly but it speaks a lot to me about where I'm at right now and to remember to enjoy the moment.

You know, I totally forgot to ask the nurse about the sugar? Ha ha. I wonder, if cancer like sugar so much, why you couldn't come up with something that you could add to sugar that would kill the cancer instead of having to do harsh chemo chemicals. Hmmm...

Hugs to both of you,

Pat

claoh

If I go directly into the cancer survivors discussion site it will list the number of views when I click on my "choices" icon. Right now we are at 926.

marlakeeth

well Claod, I tried to locate the area you are speaking of with no avail. I click on the drop-down menu, and subjects are listed, but can not even find us! Humm?

Maybe we could contact the CSN to ask how to put up our discussion board. What do you think about that? My scalp stopped hurting the very next day and except for being fatigued now and then, I am okay, but by 4 pm am really hungry. I am drinking 64 oz+ of water every day and at least 90 grams of protein. I am relishing the coming week, since I hope to continue to feel pretty good. A bit concerned about what the second round of chemo will do, but I can not control that for sure.

Last night my neighbor came over, very nice sharing couple who are quite involved in the community, operating a local tree service and very involved in their church. The reason I explain this is so you might have a bit of their kindness and who they are. The husband came over and said, "I am going to do something for you!" He then proceed to go with me to the back porch, leaned his head over, and with his clippers, shaved his head in my honor!!! I was moved beyond tears! I don't know why I cried, what a generous offer. I can not explain why I was upset and cried. Do you know why?

I actually think that my tumor has shrunk a bit. Maybe my imagination or something. I believe in the power of prayer and have so many praying for us all. May God bless us all.

Talk soon Ladies, hugs to you,

Marla

claoh

What a beautiful gesture from your neighbor. Yes, I believe we all have a great faith in God and know we are in his care through this process. About crying, we have so many emotions going on over these situations. Never know what will trigger it. Mine are usually songs we sign in church as there is so much more meaning now when words relate to God's care or the life after here. I will say that after I made my decision to forego treatment, I have far less teary eyes and more peace for the journey.

Perhaps I can see how many views we've had because I started the link? Did you go into the cancer survivor discussion right off the bat, rather than clicking on one of our discussions? I know I don't see it from our discussions, when I get a notification that one of you left a comment.

Sadiej

Morning Ladies!

Ha ha, glad it's not just me. I couldn't find it either, so Claoh, I vote you to keep tally lol.

Marla I think I would have cried too. What your neighbor did was so beautiful and selfless! I think that knowing that someone cares that much would bring tears of gratitude to anyone's eyes. Mine were tearing up just reading about it!!

One comment I keep seeing from you Marla is that you were drinking 64 fluid ounces per day. I need to do that, I was told to do that to flush out the chemo but I have been ignoring it. Maybe that's why I'm sleeping so much? Anyway I think I will start on that today and see what happens. That may be the ticket to get through the next round of chemo a little easier on the 21st.

I woke up at 3:00 a.m. today in a lot of pain, mostly from my chemo-induced RA with fibromyalgia. It's hard to deal with the flares but I'll figure it out somehow. This is just one of many things that my last chemo did to me. I also have peripheral neuropathy in both legs and a whole bunch of other stuff caused by the chemo. That was why when I found out I had to do chemo this time I told them that I would only do it for the sake of my husband and daughter. Otherwise I wasn't interested and would have probably gone the same route as Claoh. The oncologist at the Cleveland Clinic took note of that issue and is prescribing chemo so that it doesn't damage my body much more than it already is. I can't drive, I can barely walk and it really stinks when I used to hike all over and rock climb and go horseback riding. I loved canoeing but at least I can still swim. Okay enough of my sob story LOL. At least you understand what the decision was behind me taking chemo. Anyway, so 64 oz of water every day and I will walk the walk. At least I have very good friends like y'all to talk with. I so enjoy your posts!!

I had an interesting encounter a couple days ago. I was playing games on my phone and of course getting the usual ads in between levels. They even consisted of Bible ads but I already have a Bible on my phone so I wasn't really interested in them. Anyway, this ad popped up and somehow I knew it was from the Lord. It was a scroll that started out telling me how much he loved me and cared for me and that he was with me in this walk. He said he knew that it was difficult for me but to remember that he is there. He went on to repeat how much he loved and cared for me and now happy he was with my faith. (Although I don't feel very faithful right now LOL). Anyway he told me to hang on and that there would be something new. I don't know what that would be so I will just allow the Lord to work and watch and learn. I have never seen this ad before nor have I seen it since. Remember Marla that he will dry our tears. Good thing too because mine are streaming right now LOL.

Just as an FYI, I also think my tumor has shrunk. I'm trying to understand that because I know in my gamma knife surgery they stopped the growth but did not remove it so to speak. So what's making it shrink? Is it the fact that the chemo is taking away any nutrients for the tumor and it's just dying off by itself? Haha, leave it up to me to try to figure out the how and why of things. I guess that's why most of my life I was a mechanical engineer.:-)

Okay that's my heart laid out for today. I love y'all and give you a big hug! Be blessed today!

marlakeeth

Sadiej!

love this comment!!

So what's making it shrink? Is it the fact that the chemo is taking away any nutrients for the tumor and it's just dying off by itself? Haha, leave it up to me to try to figure out the how and why of things. I guess that's why most of my life I was a mechanical engineer.:-)

I do know about the sugar and cancer cells, they have a faster metabolism than other cells and the reason our hair everywhere falls out is because cancer cells attack the fasted growing cells, like hair and nails. I am a nurse and used to be a PET scan salesperson for a company when the machine first came out. Private offices with Drs. would have them of (course to make money from) before hospitals could afford them. Now they can be in trailers to be mobile and in hospitals and the insurance companies will pay for the scans.

I feel very tired this morning and naptime is here and it is only 8 am, but have been up doing laundry and stuff since 5:30 am so I will close for now. Jesus we trust in you!

talk soon, marla

Sadiej

I didn't know cancers attack fast growing cells! I am learning so much from the both of you! That's really cool Marla that you used to sell pet scans! Was it hard back then to convince the doctors to get it?

Claoh, I found the counts! When I go to my bookmarks to pick this one the number of views is there. So I guess you don't have to give us the counts after all lol.

Sorry about my earlier post. I was looking back at all the crap that was done to me rather than looking forward at what is possible. Got myself turned around again and I'm ready to continue the course. I have two more chemos to do and then I assume they're going to do a PET scan as I don't see any more in my schedule. In September the only thing I have is an MRI to see how my brain is LOL. I'm pretty sure it's still there haha.

claoh

I think it is the chemo that attacks fast growing cells - the stomach (which causes diarrhea); the mouth (which causes the sore mouth); and Hair (Which causes it's loss.) It also attacks the cancer because it is a fast growing cell. Powerful stuff.

Pat, I meant to say how wonderful your homestead sounds - can't imagine going to a cabin could be any more pleasant. You even name your wild animal visitors. Fantastic.

The counts are very interesting, maybe they're so high because I keep checking to see if you guys are on with a new message so much! : )

Hope you're feeling better Marla.

Sadiej

Good morning ladies!

I hope everybody is feeling better today.Claoh, that's not a cabin that's my house lol. Those "critters" can get annoying sometimes like when Sweep comes up and stomps her hoof because she is impatient for her breakfast. :) Did I tell you that Sweep got her name because she went through and ate everything, sweeping it up like a Hoover? Peaky got her name because when she first came around the house she would look over the top of the bank in our yard. All you would see were her ears and eyes, then she would duck down and then peek over, repeating it over and over again. They're all quite the characters. Chucky was funny last fall when he took off with about 6 ft of my cantaloupe vine. He took off running to his house with cantaloupes bouncing all over the place lol. Chucky seems to be the only one that won't follow the rules. :-) I have a weed line in my garden and have taught the deer that the one side of the weed line was theirs and they wouldn't be allowed on my side of the weed line which was garden. They all follow the rules although I have to teach the babies when they come up the first time. Jeffrey, the blue jay, came around 2 years ago when he was just a baby and loved eating the dry cat food I would leave out on the porch for the feral cats. Now he's just obnoxious screaming out when he doesn't see the food he likes on their side of the weed line. The rabbits that come around ignore everything preferring to eat the clover that's in my yard. I told my husband that sometimes I feel like Dr Dolittle LOL. Towards the fall (hunting season) I shut down the feed. I mostly keep it for the lactating mothers and their babies. But I do not want them to get too familiar with me. It makes it safer for them come hunting season when they go back into the wild. I've been doing this for a few years now and the neighbors get a big kick out of all of it. I don't want them getting used to humans as this could spell death for them when hunting season starts. But it's so cute in the spring when the moms bring their babies out who aren't any taller than about 3 ft. They see the path to the river and run up and down it jumping and bouncing around. So that's basically my house. :)

Marla, I hope you're feeling better today. I was wondering if you had a full PET scan and a brain MRI? I was also wondering if you were going to get a mastectomy or not. If you do, were you planning on reconstruction? I am so sitting on the fence about that whole thing. The thing that the doctor told me about recurrence and whether or not I have my breasts removed gives me pause. I would really like opinions here. I'm just not sure what to do. I'm really too old to care about looks lol but I wonder if mastectomies are even worth it for triple negative breast cancer.

Y'all take care of yourselves today. The most important person is you. :-)

claoh

LOVE reading about your home and critters Pat. Sounds magical!!! Along those lines you might enjoy a book I recently read "The Oceanography of the Moon." There is magic, romance and mystery over the two main characters "secrets" which are well revealed until towards the end which kept drawing me back.

The prospect of a double mass was the only thing I was on board about. I'm big chested and wouldn't mind losing a few pounds that way. I did not do any research to see what was actually involved and wondered where/how the skin would be applied after the breast removed. I even hoped the surgeon would remove the breasts without chemo but was denied. I did feel I would do a double, so not lopsided. Like you, at my age I'm not too concerned about cleavage appearance. I strongly believe you will know the right direction when you have complete peace about it.

marlakeeth

Ladies, I am having these very same thoughts since I don't want to do this again. Right now, just thoughts.

"wondering if you were going to get a mastectomy or not. If you do, were you planning on reconstruction? I am so sitting on the fence about that whole thing. The thing that the doctor told me about recurrence and whether or not I have my breasts removed gives me pause. I would really like opinions here. I'm just not sure what to do. I'm really too old to care about looks lol but I wonder if mastectomies are even worth it for triple negative breast cancer."

My PET scan was from the base of my skull to my knees. I wondered why my brain was not included as well.

The topic for another ask of the dr. later. I call it my Angelina Jolie but, no money, no body LOLOL.

Update today,

my very short hair 1/2 long is starting to fall out, pubic hair and all. Sill have eyebrows and eyelashes for now.

Feeling pretty good, just resting now and then. Take care my friend and have a wonderful day!

PS Sadiej, love your stories!

Sadiej

Morning ladies!

Marla, I have not lost any of my hair yet but I am expecting it won't be too long before that happens. How many treatments have you done so far? I figure I can use that as a guideline for my hair also. But hey look at the bright side, we don't have to shave anymore LOL. On the subject of a brain MRI, that's how they found the sesame seed sized tumor embolism in my brain. That's why I was curious as to whether or not they had done one for you. That may not be necessary as yours is not metastasized as badly as mine has. But you're right that is a question to ask your doctor.

I want to thank you both for your inputs on your thoughts about mastectomies. I decided to go back to the FORCE boards to try to find information that will also help with the decision making. This website mostly deals with hereditary cancers but it also packs some powerful information on things like mastectomy decision making, questions to ask the doctor etc etc. I'm including a link here:

https://www.facingourrisk.org/

The website is free and has a lot of very good information. I am currently looking at this page in their website:

https://messageboard.facingourrisk.org/t/questions-to-ask-doctor/4648/2

I'm hoping that I can find out a lot more information that will also help in the decision-making process. From the "ask the doctor" questions on the site it looks like I need to do a lot more research on the subject. Like, what is a drain? What do I need for surgery? Will I be hospitalized? Right now I'm feeling pretty ignorant on the whole subject lol. Yet at the same time I keep remembering my doctor telling me that even if I have them removed there's still a chance with triple negative to recur in the chest wall behind where the breast was removed. So is it worth it? Just so you understand, triple negative can recur anywhere in the body but I am just not sure about doing more damage by removing my breasts when it can be just as easily recurring behind the breast on my pecs. So is there a point to this or not? Just having your breast removed does not mean that you are guaranteed that you will be free from recurrence. As you can see, this stuff is dizzying to me.

Thank you both for your kind words about my crazy household LOL. I'm curious as to what stories you have about where you live? I'm sure you have some and it will definitely lighten up the board which by the way is over 1,000 views. Congratulations Claoh, I do believe you have the largest amount of views on this website lol.

Claoh, just wanted to let you know that I picked up an audiobook of "The Oceanography of the Moon" you recommended. I am looking forward to listening to it. The sample sounded very interesting and I can definitely relate. Thank you for your recommendation.

That's it for me right now ladies. I pray that you both have a very good day today.

Pat

marlakeeth

Went to bed last night at 7 pm, yes I know it was still light outside!

So far the nausea only lasted a few days after chemo, and it took about a week after chemo to feel okay. This last week just has fatigue and I rest and nap for several hours and I am good. I get tired, winded, and have shaky legs walking back and forth..

I will be having my second chemo on Wednesday the 23rd. I have heard that you start to lose your hair around day 14 after first chemo, but everyone is different. Mine started around day 14! I bought this natural oil to put on my scalp, Organic Amalaki scalp oil serum,I just put it on 30 mins ago as recommended and now going to take a shower. Will update you in a bit!

marlakeeth

Well, lots and lots of hair fell out. It is only 1/2 inch long but it was everywhere! I just patted my head to try it somewhat since every time I touched my scalp more came out.

Also, whenever I feel a bit nauseous, I ate some apple sauce, my new best friend. Try to eat small meals often and DRINK LOTS of WATER!!!! Limit your sugar intake too!

I think that we will have a new person joining us, thelazyaranch4.

I truly hope that I provided her with accurate directions to locate us!

thelazyaranch4

Hi all, thank you for instructions on how to get here. I was expecting a chat room and not a post so that was the confusion:)

If you read my post from today labeled “TNBC Reoccurrence” you will know where I’m at. I’ve just recently traveled this long road and unfortunately on my way down the same path again too quickly! My hair is about two inches long now but I will most likely loose it all over again.

Hugs to all 💕

Sadiej

Welcome to the board thelazyranch4!! I'm really, really sorry that you are dealing with a recurrence, especially so soon after finishing up your last treatment. We were just talking about that when we were talking about mastectomies and whether they're worth doing them based on recurrence. That is the one thing I am concerned about. I would think that your doctors would pay attention to your lifetime toxicity level before putting you back through all of that treatment again. {Removed the sentence about immunotherapy not working on triple negative. That is a false statement. I was thinking hormone therapy which is totally different than immunotherapy. My apologies to everyone on this board. I need to be careful when I make my statements to make sure that I don't misrepresent.} Have you gotten a full body PET scan and brain MRI just to make sure that it has not metastasized elsewhere? Know that we are all here for you if you need someone to talk to or just need an encouraging word. I can't even imagine how terrible that must be to barely finish up and then to face it again!

Marla, I think you got your haircut just in time! Do you have ,"chemo caps" for your head? My daughter got a bunch of them for me for my birthday last June. She is so sweet and thoughtful! I am still waiting for my hair to fall out, although the oncologist and nurse said that may not happen. I have had five chemo treatments so far which started on July 10th. My sixth one will be August 21st. I guess they really are taking it easy on me. Of course I was a crying blithering idiot when I first spoke to them about how much I didn't want to do chemo because of the damage that was done to me from before. They are stepping lightly with me apparently. I think I remember something about day 14 and didn't even realize I had passed that date. I know that I am definitely grateful for the 10 days between the chemo rounds. But I will admit as I go through these rounds I am getting sicker and sicker as well as tireder and tireder. (Is that a word?) I had a nasty flare that I've been dealing with for the last 4 days. It was a ra/fibromyalgia flare that was hitting the pain level of about a nine. I asked my oncologist if that had anything to do with the chemo and she said normally ra and fibromyalgia are better during chemo but that is not always the case. Whatever it was it was very hard to get through. Isn't it interesting that we all have different symptoms? But then again Marla I want to thank you for keeping on my case about drinking water. Someday I'll get there LOL. You just keep telling me. :-)

Claoh you are mighty quiet. I know that your path is different but it's just as important as ours! Love to hear from you also. I don't think it was very fair for your doctors to deny you a mastectomy just because you weren't doing treatment. That makes no sense to me. But then again after doing a little research on mastectomies without reconstruction I can see where the norms tend to put up roadblocks for anyone that has different ideas. Or maybe they're just afraid they'll get sued if / when it metastasizes. Who knows?

Here's a tidbit of information about going flat after mastectomy. There are women out there that have asked for no reconstruction after mastectomy but just wanted an "aesthetic flat" chest when they were done. Even though the doctors and surgeons agreed to that, these women would wake up and find folds of skin where they're breast once was. Seems that the surgeon decided it was better if he left folds of skin "just in case" the women decides later on that they wanted reconstruction. The number of women that was happening to was approximately 1 in 20. As the lady mentioned in the dialogue, it is such a difficult decision for each person. When you finally come to peace with wanting a flat chest and are good with that decision, and then when you wake up from surgery you see all these folds of skin that you did not agree to it tends to set you back. Now you have to go through the emotional distress to make it right when they should have done that to begin with. That's why this stuff reminds me of the fact that there are some out there that will not accept a woman's choice. And as the lady said, that is a red flag and you may want to go and get a second opinion elsewhere.

Geez I write a lot!

Again, thelazyranch4, welcome to Choices where we each write about our own experiences. Everyone is entitled to their own path and everyone helps each other along the way.

Okay ladies I'm signing off once again LOL

Pat

claoh

Love reading your posts and will look at the website you noted Pat. Welcome LazyRanch. I look forward to finding and reading your previous posts.

Mainly quiet as my sister in law was visiting the last few days and we've been busy keeping her busy : ) I'm also in a state of not much change which I am very grateful for as that was my hope. Next Wednesday is my next visit to the palliative doctor. I do have some questions for her: Why does my pain increase shortly after taking Advil or Tylenol, then settle down? Does the occasional numbness I feel in my arm have any relation to the affected nodes? Can I use the CBD cream on my breast? How do my blood pressure medicine and pain relievers affect each other?

I am aware that there has been some spread as the breast tumor is larger and more burning in the chest area.

However, I am fortunate these are still very controllable. It's not every day, perhaps once a week that I have the numb feeling.

As for my residence, I live in a 55 plus modular community in Florida and have a beautiful view of the lake from my windows on the back of the house. I wasn't a real fan of moving to Florida and that was my one stipulation to make the move : ) We have lived here for 4 1/2 years and have enjoyed many of the sport activities that are available.

Sadiej

Hi Ladies!

Claoh, your home sounds wonderful! The first question is if you can go fishing in the lake LOL. Or boating. Or even fishing while you're boating. :-) Do they have croquet there? I love croquet and used to play it a lot when I was growing up. That and badminton. My lifestyle is more sedentary now so sports wouldn't work for me anymore.:(

I am so glad that you're sister-in-law came to visit you! Family is so important! Of my whole family I only have one brother left and I do not see him very often at all. He is more of a recluse and likes it that way so I respect his boundaries. I also have a brother-in-law but he has been keeping pretty busy since my sister died of endometrial cancer a little over a year ago. Once in awhile we get together for lunch or breakfast. So other than my nephew I do not get many visitors in my family. My daughter lives in Georgia and although I wish we lived next door to each other that just isn't going to happen at this time. We talk everyday though. She's more of a best best friend than a daughter. I am very grateful for that relationship. We can talk about anything and it's okay.

It looks like you have your questions ready to go for your palliative care doctor and I can't wait to hear what the results of that conversation will be. Those are really good questions. I'm still wondering if you shouldn't get a second opinion when you wanted a mastectomy and your doctor said no. I don't think that's fair at all to you. Especially since it's getting bigger.

For anyone following this board, I wanted you to know that the Cleveland Clinic is doing trials on a new vaccine specific to TNBC:

(From their website):

"Cleveland Clinic recently opened a clinical trial to determine the maximum tolerated dose of a vaccine in patients with non-metastatic triple-negative breast cancer (TNBC). The breast cancer vaccine was invented and developed by Cleveland Clinic immunologist  Vincent Tuohy, PhD, and his research team. '

Link: https://my.clevelandclinic.org/podcasts/cancer-advances/triple-negative-breast-cancer-prevention-vaccine#:~:text=Cleveland%20Clinic%20recently%20opened%20a,PhD%2C%20and%20his%20research%20team.

What's up with all these long links?!?

Marla how are you doing this morning? You guys can't leave me to make all these long-winded comments lol. I thought of you when I saw this trial since yours has not metastasized. If nothing else it's now in our conversations in case anyone is looking for trials for triple negatives.

Lazyranch I'm hoping to hear from you soon. I see you love horses. You would appreciate this then. I was once a guide on a dude ranch for a summer. My favorite days of course were my days off when I could take a horse and just go exploring in the woods or down to the creek to take the horse swimming. Always loved the feel of the horse when it was swimming, it reminded me of the carousels at amusement parks. Those were great times and I miss them dearly.

Okay y'all once again I think I have conversed long enough. Y'all have a great day and be blessed!

marlakeeth

I am so stinking jealous of this post you wrote:

"I was once a guide on a dude ranch for a summer. My favorite days of course were my days off when I could take a horse and just go exploring in the woods or down to the creek to take the horse swimming. Always loved the feel of the horse when it was swimming, it reminded me of the carousels at amusement parks. Those were great times"

Love horses even though I never had one, but loved to ride my friend's horse and rental horses! I love your long-winded posts, make it almost like we have known each other somewhere in time! Love to hear about all of you critters too! I have a few feral cats that I am reluctant to feed, they were left from when my brother and his wife lived in the house next door. They left them in my care..that was two years ago. But I love animals so I feed them. The funny thing is that my brother and his wife come to see and pet the cats every week now and when I let them. it can be tedious since my sister-in-law asks so many questions and then has to repeat them to my brother and he says humf. My brother does not do well with any health issues, never has and never will. I am having my house painted and they have just arrived, so gotch scoot for now! take care ladies!!!

claoh

Yes, we do have a lot of activities here. For sports we participate in golf, shuffleboard, cornhole, water aerobics, ping pong, biking. Then we have the two very close couples that are sharing my "secret" of cancer. We get together every Thursday evening for gaming (so I'll be there tonight) and going places "off campus". The three girls get a yearly membership to the Community Theatre for 5 musicals a year.

Our lake is a quiet lake, mostly fishermen. I thought of buying a small aluminum boat and hand motor to tool around, but when I saw how much bird poop gets on the dock and boats, and I'd have to lug the gasoline out to the boat I changed my mind. Now we get a boat fix once of twice a year by renting a pontoon boat in a neighboring lake to share with family when they visit. We did rent a couple of jet skis for my birthday 3 years ago in a neighboring lake and rode them through a couple cannels to see our house from the lake - it was fun. I'd love to do it again, but that small marina is no longer operating.

Lazy Ranch - I did look at others previous posts you have and too am so sad to read how soon this beast has returned. My heart goes out to you. Please keep sharing your choices and concerns so we can support you.