Choices

Sadiej

Evening ladies!

Before I forget, I will be in Cleveland tomorrow having the thumb surgery checked. I may be able to get back on when I come back as long as I'm not too tired. My rheumatologist is going to send in some prednisone to help stop this flare that seems to be going on and on. I will actually see him next Tuesday and can fill him in on everything that's happened to me. He just gets a little bits and pieces for now so this will give me time to explain it all.

Marla how does your house look painted? There's nothing like a freshly painted house to brighten up the area. I'm sorry your brother and sister-in-law are so trying at times. It's probably pretty rough on you especially when you're tired or recovering from chemo. Guess that would be a good time to set a boundary LOL. Tell them that I said that they can come over as long as they promise not to talk about anything health related haha. Not that I have any say in the matter of course. :-)

Claoh I hope you're having fun tonight! Sounds like there are a lot of things for you to do where you live. I had to laugh when you said cornhole. :-) Seems like that's a popular game everywhere. You must have had a lot of fun on those jet skis. But I can see your point about not keeping a boat out on the lake with all the bird poop. Yuck!

Okay just a short one tonight. Just wanted to let you know that my long-winded dissertations will not be there tomorrow morning. :-) You ladies have a blessed day tomorrow also. Y'all deserve it!!

Pat

marlakeeth

Good morning!

Sadiej,

I hope that your thumb check went well. How are you feeling morning? What did you have done to your thumb anyway? I know a woman who had thumb surgery and it took a long time to heal.

Do any of you ladies do any crafting? Card making, scrapbooking, embroidery? I have and do all of these but not so much anymore. I have tons of supplies and looking to donate them somewhere. I know that you guys live far away, but might have any ideas as to where to give them too.

Finally, most of my hair has fallen out. I am so over it and want it gone to get on with it. I am tired of shedding everywhere like a dog!

Finally finished painting my house. I will try to include a photo. Light blue-gray with white trim, the hose color is called Distant Star. Very nice and I am done spending money on the house. Last year had the interior painted, the kitchen tiled, and a tiled walk-in shower with a seat. I had no idea how lucky I was to have all of these things done before.

So that is my story for today. Hope that you are all feeling well. Take care my friends, and remember

The storm said to the warrior I am coming, and the warrior said I AM THE STORM!

Sadiej

Hi ladies!

Wasn't really going to write anything today but I needed to jump on to remove the statement that immunotherapies don't work on TNBC. That was an incorrect statement. It's hormonal therapies that don't work on TNBC. I really need to watch myself when I make statements like that and I apologize to anybody that's read that and believes that to be true.

Marla, I found out specific information that applies to you about the vaccine for TNBC. Although I do not qualify as mine has metastasized it might be worth it for you to look into. Here's a snippet of that conversation I had with the Cleveland Clinic:

"... I understand that you are also reaching out about the trial to provide your friends with triple negative breast cancer more information. I always refer patients to the National Cancer Institute's public website at clinicaltrials.gov for more information on specific trials. These web pages include information such as a detailed description of the trial, recruiting status, and eligibility criteria. 

You can search for the study directly on the website.

The clinicaltrials.gov ID for this particular study is: NCT04674306

The full title of the study is "Adjuvant Therapy With an Alpha-lactalbumin Vaccine in Triple-Negative Breast Cancer"

This website will provide you with all the information that is publicly available about the study.

There is one more thing to note. At this time, we have completed our initial cohort for enrollment onto the triple negative arm of patients not currently receiving Keytruda (pembrolizumab). However, as we continue to review study data, new enrollment slots may become available.

This trial is only available at Cleveland Clinic Main Campus. If your friends believe they may be eligible for enrollment and are not currently patients at Cleveland Clinic, I would encourage them to reach out to our Cancer Answer Line at (216) 444-7923 to become established with a Cleveland Clinic Breast Medical Oncologist. "

Marla, I know you live in California but there are a lot of options if you choose to follow this course. The best thing you can do is get a hold of them to see what is available to someone living on the West Coast. They have helped my husband and I tremendously through foundations and grants and may be able to help you also.

So ladies, this will be a little short today. I am having a difficult time coming to grips with having another door slammed in my face AKA the vaccinations and really need some time to come to grips with it all and then to keep looking. Y'all be blessed and have a great day.

Sadiej

Hi again ladies!

I don't care what anybody says, movies do good for the soul LOL. Dusting myself off and moving down the road again. Marla, cute hair! I like your profile picture!

I want to let you guys know that I'm headed back to Cleveland again tomorrow for an early day of chemo Monday. I have doctor's appointments pretty much every day next week with various doctors so I'll get onto the boards when I can.

Miss you all! Keep on writing!

claoh

Hi Gals,

Marla, had a chuckle when you said you were shedding like a dog. : ) Also like your final quote, goes along well with Sadie's fight song. It takes a lot of resolve to keep strong, and you ladies are a great help in this journey.

As for donating your craft items, perhaps a shelter of some kind could use them? I have oodles of painting supplies, both watercolor and acrylic, that I don't use much. My two close friends have had a couple sessions with acrylic with me, but we need to do more.

Our youngest son and his girlfriend visited this afternoon. They live about an hour away. Had a very pleasant time and hope to get together again in a month or two. He just graduated from college last Fall, and has two weeks under his belt as a new teacher. I suspect these two will be married within the next year : )

Always love to read your posts. Hope lazyriver shares some more with us.

Sadie, take care. My heart goes out to you and look forward to hearing from you soon!!

claoh

sorry I misspelled our friend lazyranch wrong. Hope she returns.

claoh

Sadie, hope you're home and resting comfortably. Think of you often.

Marla, think of you often too and know you have your next chemo Wednesday.

Was just making out my list to talk with doctor on Wednesday.

Prayers go out to both of you as we travel through this.

Sadiej

Morning ladies!

Claoh, thank you so much for keeping up your prayers and encouragement. I do believe that those helped me a lot and I am deeply grateful for you sending out those to help me get over that last blowback.

Had a deep talk with my oncologist nurse yesterday. Trying to understand what the TOTALgoal of this is as well as whether or not to do mastectomies. I told her that this is not a personal decision that I am asking for, I am looking for just the factual information on why or why not that should be done. It took me a few times but I think she understands now that I am not discussing personal decision but rather anything dealing with the facts of recurrence regardless of that decision. I'm waiting for her to reply to me after she talks to the Head oncologist in charge of my treatment plan.

Today is my visit with my rheumatologist. It will be good to catch him up with everything that has gone on with me. The most information he has on this has been when I called and say hey I have this or hey I'm hurting. It should be a good conversation considering that my RA and fibromyalgia are both chemo induced from my last chemotherapy.

Tomorrow is your big day Claoh! I'm really glad to see that you have put a list together of all your questions. I can't wait to hear how it went. God bless you Claoh, you are the real trooper in this blog! By the way, my fight song as you call it is really just a little ditty I came up with off the top of my head LOL. I have been writing poetry since I was a little girl. My daughter wants to publish them but I told her I didn't want that done until I was no longer on Earth haha. I told her I didn't want the attention and she told me that she could publish them under the name Sadie Jane. :-) That was our last conversation anyway. We'll see what happens. Right now she's too busy working and opening up a coffee shop and going to school. I don't know how she does it considering her job requires her to be there 10 to 12 hours a day for 10 days and then off for two. She's planning on opening the coffee shop mid-october after the construction is done.

Marla, how are you doing? Are you getting prepared for your chemo tomorrow? I had to laugh because my nurse oncologist told me I had to be drinking 64 fluid ounces of liquid everyday. She told me it could be anything except caffeine drinks. I snickered when she said that as I thought of you! You are the best! :-) So I guess between the two of you I better get my 64 fluid ounces in LOL. So I'll start off this morning with my coffee of course and a protein shake. My husband puts the protein powder in 16 oz of milk in a blender to get rid of any chunks. It ends up tasting just like chocolate milk. I'm really not much of a water drinker anymore but I usually can get two 16 oz bottles in me so I guess I'm close. She said I could drink juice or Gatorade also. It's good to have choices. But hey, isn't that what this board is all about? :-)

All right ladies I'm signing off for now. I have to get ready to travel to my rheumatologist. Thank you both for being here. It means a lot to me. Be blessed and have a good day!

marlakeeth

Good morning ladies! This is a photo of the front of my house. I thought I would share it with you since this has been a busy week. Well, we all weathered the Tropical storm without incidence. I live close to the mountain range, but far enough away not to be in the way of mud. The property lies on a mild slope and there are 3 houses on the lot. My house is at the end of the driveway. I own the middle house too, that is where I had my patient move into since he is 76, today is his birthday, and he needs some help. I have looked after him since 2014 when his mother died. He is a bachelor and has had a heart attack, kidney stones, prostate cancer, and had fallen a few times. He decided to sell his family home for a cool 2 million CASH. He decided since the house would be available for rental when my brother left, he would like to move it. No family left to look after him, so my husband and I sort of adopted him.

I have lost all of my hair, no hair left under my arms, and waiting for the rest to fall out. Always a surprise in the shower! I am so glad to hear from you ladies, always a bright spot in my day. I have bits of nausea now and then esp if my stomach is empty. My manicurist gave me two wigs, one auburn and a light auburn with highlights, I like these, they almost look like the way I wore my hair before. My sons both said, "Looks good, looks just like you!"Today I am very tired. Don't know why, just am. I have been up and dressed since 6 am, and it is now 8:30 am and I am ready to go take a nap. The drs. office just called to confirm my chemo appt, (like I would forget) lolol. This is the wig I got from my manicurist yesterday. Looks like me!!

claoh

Love your home Marla - you painted that all by yourself!? So very nice to hear of your adopted neighbor - very sweet and caring.

Your wig looks a lot like one my sister loaned me when I was contemplating chemo. I also bought just "bangs" to wear under a hat or scarf. Even bought stencils for my eyebrows.

Typed out my questions for the doctor tomorrow. Did find a nice site that listed all the symptoms in other areas the breast cancer could mastasize (sp?) to. Looking forward to seeing her again.

Will touch base tomorrow with any updates.

marlakeeth

Thank you for the compliment on my house painting. I had professional painters do the work. My brother and I painted it 10 years ago and that was enough for me! Took a 2 hours nap and some food, feel much better now. That fatigue hit me hard, out of the blue.

Claoh, how are you feeling? let us know how you are doing. I admire your bravery!

Any word from Sadiej yet?

claoh

I really am doing well at this point - no change in my activities. However, I do feel the tumor is growing as well as the lymph nodes and sturnum as there is a bit more "heat" there. I also have changed my sleeping position - used to be on my side but feel that was making my breast ache from night movement. Last two nights have changed to sleeping on back and think I'll look into a sleep bra to hold the girls in place comfortably.

Sadiej

Good morning ladies!

Marla you never cease to amaze me! I can tell you have a big heart the way you take care of your neighbor. Put a smile on my face when I read about it. And your house is gorgeous! I really do like that paint color on it. It's like it was always supposed to be painted that. Love your hair too! That color looks really good on you, although as you mentioned that's the way it looked before. Like I was telling you earlier, the good news is that you don't have to shave anymore LOL. Always got to look on the bright side right?

Claoh I think you're a lot more ambitious than I would be. Typing up the list of questions? Geez I think I would just take my scribble sheet in haha. I can't wait to hear what happened at your palliative care doctor today. I'm a little nervous for you, with that getting into your lymph nodes and possibly your sternum. I'm concerned that it might metastasize into your lungs or lymphatic system. Like you said there are areas where TNBC can metastasize to aka the lungs, the brain, the bones. I had something going on with my sternum but they weren't concerned with it at this point in time. I just pray that I don't metastasize to my bones. I hear it's very painful. My rheumatologist set me up to get tested for bone density yesterday. I'm wondering if that might be a factor in everything else that's going on with me. I never thought to ask him LOL.

I'm glad you gals are still writing on the boards. Even if I don't feel up to it I try to catch sneak peeks of it when I'm not at my best. I never heard of a sleep bra before. Is that what they're really called? I always use a sport bra both during the day and at night. It seems to help me anyways. Had to get one a couple sizes bigger to fit my swollen breast into.

So I decided to take a different tactic on my chemo to see what would happen. As you know Monday was my chemo day so I spent most of my time in chemo munching on snacks that they had there for free to try to keep something in my belly. Not the most nutritious thing to do but I think it helped to continuously feed myself so I didn't get nausea so bad. The next day was the standard day of being very tired and nauseous along with diarrhea. Took my medicine required for the above and then decided after my rheumatologist appointment that I was going to stay out as long as I possibly could. My husband and I drove around the countryside and then he did something very special for me. We stopped at one of the many dude ranches so I could pet the horses. I choose one, or rather she chose me and I walked up to her and started petting her after the usual hand to nose introduction. I talked to her for about 15 minutes with her being totally attentive to me. So I sang her Renegade's song. Renegade was the name of my horse I had down on the dude ranch when I was a guide. He loved country music and when it was on the loud speakers he would "sing" along with it. It's kind of a guttural hum actually. So I sang Renegade's song to her while I was leaning over the post. She pushed her head into me while I was singing and then eventually put her head on the top of my back. I could feel the weight of her head as she just relaxed and listened. Sang that for about 5 minutes to her. Apparently she really liked it LOL. Got home late and managed to barely get something in my gut before I fell asleep. Like I said all in all a good day and I'm glad I fought through the fatigue.

Okay ladies here's my extra long blog for the day lol. Just a couple extra things to add: Marla did you find the blog count? If you have this one bookmarked you will see the count when you go to the bookmark underneath its title. Claoh, if you need to edit the blog go up to the top of yours and pick those three dots on the right. You can edit a blog up to a week old.

Be blessed and have a good day!

marlakeeth

I wish this site was easier to use. Every time I sign in unless I see a message from you guys, I get twisted around in the site!

"If you have this one bookmarked you will see the count when you go to the bookmark underneath its title. Claoh, if you need to edit the blog go up to the top of yours and pick those three dots on the right. You can edit a blog up to a week old." I have tried to bookmark it but it doesn't show up. I will keep working on it.

Today seems pretty normal after yesterday's long long nap!

Sadie love your story about the horse! Made me smile and wish I could have been there to enjoy it with you! I hope that the day goes easy for you!

I will look into the vaccine site and read about it all. Not much to chat about right now. Will check in later.

Claoh, glad that you checked in just to say hi!

Hang in there ladies!

claoh

Loved the horse story also, but did I miss the title of the song? Can just picture you and the horse "connecting". Glad you had a very special day and fought the fatigue.

Well, it was an interesting visit to the palliative doctor today. The next sentence may surprise you like it did me, but hang in there. She said she was going to refer me to hospice. Now, I remember when hospice meant you were at the end of your trail. She explained that hospice is now sought much earlier and they are also into palliative care and will do the same as she is doing, for as long as I need it. They will just "reinstate" me every six months. The benefit is they will come to the house for my appointments and be with me through the complete progression. I was saddened a bit because I like her so much, but it will be nice not to make the trip to the hospital. Not as long as yours Sadie, but about 90 minutes. So, on the ride home the hospice office called me to make an appointment for tomorrow morning at 9 to start the paper work! Talk about fast. As I suspected, it is the hospice that I was trying to get into a couple months ago for palliative care - just needed a good referral. I did tell the hospice person that I wanted an unmarked car and for the person to just state who they were visiting and our address to the gate person. The gate people are community people, and I didn't want the word to spread before I'm ready.

The doctor also stated that CBD and marijuana products are definitely a "go to" so I will stop at the local medical marijuana facility in the next few days to set up an appointment to see an appropriate doctor and get a medical marijuana card. They did say not to "smoke" the marijuana because of raspatory issues, but to get gummies or cream. Who knows, if it works well I may be able to keep at the same level of pain meds or reduce to nothing. Am I being too optimistic : )

We discussed a bit where the cancer may spread, as I felt it would be close to where it is. The answer was TNC can spread anywhere in the body, not necessarily stay close. I did find a list of symptoms to watch for in other areas of the body that I like. I couldn't find symptoms for cancer in blood, but it did say it was very rare to spread there, and the doctor confirmed this.

She also gave me a prescription for lidocaine patches to put on my upper left chest/shoulder area to help with the tingling/numb feeling from the nodes. To be effective, she said they need to be worn for 12 hours then off for 12 hours. Think I will start this evening from 6 to 6.

Take care and thank you for sharing and being here for support. I love our communications.

claoh

Well, I just had my visit with hospice and feel very good. The next step is I will be contacted by a nurse team and set up an appointment for first meeting. Very impressed with how thorough and thought out the system is from start to finish. My husband sat in and was impressed also. One clarification I appreciated by him was my pain level of 2 is with medication. I realized that was true, without I'd probably be at a 3 or 4 for sure, which is evidenced when I get those short jabs.

Back to the sleep bra. Yes, it is probably the same as a sports bra. I was surprised when I put "sleep bra" in the search category of the computer and actually came up with some. Don't know where I may have heard the term first time, or thought of it out of the blue when I wanted more support. I think I would like one without hooks, but they might also be tighter to put on. Who ever thought we'd be discussing bras on the site!!!! : )

thelazyaranch4

Hi ladies!

I am sorry I haven’t posted anything for a few days! I’ve been busy scheduling and going to appointments. I had an appointment with my actual oncologist yesterday. She is suggesting surgery asap, radiation and Xeloda for 6 months. She is going to present my case to the cancer board to see if there are more options for me. She is concerned because I did not tolerate chemo well at all and immunotherapy didn’t shrink my previous tumors. I am also getting a second opinion from a breast specialist. I see my surgeon this afternoon and have a brain mri and chest ct tomorrow morning🙏🏻🤞 Everything is happening so fast already and that is a good thing!! I hope everyone is doing well!! I’ll catch up on all your posts when I have a moment of downtime.

hugs to all💕

Karen

marlakeeth

A special good morning to Karen! Glad that you are here! It will be interesting to see what the cancer board has to say. I am always looking for information!

Going for my second chemo in a bit. I am sure it will go well and I have an ice cap of sorts that I got from Amazon, since I had such a painful headache last time. Ice helped a great deal. Kinda looks like a turban with inside pockets to put the gel ice packs in. Will let you all know how It goes..

For Claoh, just how do you pronounce your name? I have been wondering for a week now!

I have had many patients in hospice and yes, they do vary wildly with the care they provide. It seems that it is mostly the nurses and Home Health Aides. It sounds like you have a good company! Glad to know you have hospice available to you.

For Sadie, Good morning, and hope that you are feeling a bit better after your last treatment. Hugs to you!

Talk to you gals soon!

Marla

claoh

Thanks for update Karen. Glad it is moving quickly for you and so happy you include us in your support. Your are definitely in our thoughts and prayers.

claoh

real name is Cindy : )

Will be interesting to hear how the ice cap works Marla.