Choices

claoh

Thank you both so much for the replies. My heart is lighter when you are on line. The compression socks are a good idea. I need to also get the diabetic sock to stave off the swelling of the arm. I don't remember if I mentioned the nurse also said to raise my arm as much as possible while watching tv and such to aid in the fluid draining back to the main body? I try to do that, but often forget. This week I've become aware of how much I cross my legs and am working on stopping that to help with the blood pressure : )

Sadie, I'm sorry to hear you're in such pain from the tailbone. Can you sit on one of those rubber donuts to take pressure off? Hope the radiation really helps lessen the pain.

Love, hugs and prayers to both of you!!!!

Sadiej

Morning ladies!

So I took your advice and got a padded cushion for my tailbone. My husband had a couple of them laying around so I used one and just keep my tailboneoff of it which really does help. Thank you for your advice!

I spoke with my palliative care doctor about the pain I was in and he allowed me to drop one of my pain meds from 4 hours to 3 hours. So it's a little rough in the morning when I haven't done one for a while but usually by the second dosage it seems to be under control. He will be getting with me on the 19th to see if I need a med change. I remember saying that I hoped I didn't get it in the bone because I heard it was very painful. Yep it's painful LOL.

Marla, I hope when you are done with your treatments that you will not get a recurrence. Don't forget that the Cleveland Clinic is working on a vaccine to keep triple negatives from having a recurrence. This is hopeful news for you and others who have TNBC.

Claoh, I'm not sure what a diabetic sock is. I have compression socks for my legs but I also went to Amazon and got a compression sleeve for my arm. It's decorated so it looks like I have tattoos lol. I laugh when I see the disapproving looks from some people. Ones that know what it is thinks it's pretty cool. :) You may want to have hospice measure you for a sleeve. I got my measurements done at a local rehab and then I had the nurse at the Cleveland Clinic help me pick out the size on Amazon. They do seem to help although my hand looks really fat because it doesn't cover the hand. I'm like you and don't ever think about putting my arm over my head when I'm watching TV LOL. I'm also supposed to be getting a vest that covers my upper chest, back and of course my arm down past my hand. Lucky for me Medicare pays for that and my supplemental picks up the difference so it will cost me nothing. Those things are really expensive! They had others that were just sleeves but when I tried it on I wasn't getting that much lymph out of my arm. The one I'm talking about gets the lymph out of my arm, my breast area and my back. I didn't even know I had lymph nodes in my back LOL. She measured me before and after and there was a significant reduction of lymph. Maybe then I don't have to remember to keep my arm over my head. :-)

So the 19th is going to be a pretty busy day for me. I have six or seven appointments at the Cleveland Clinic including chemo. I expect that I will be really tired and probably even sleep on the way home. The 20th will probably be a recovery mode of me sleeping and taking my nausea pills. Just wanted to let you know and if I'm not on the boards for 2 days it will be because of this. As I said, my chemo treatments are for maintenance only so I will be continuing them for the rest of my life. Marla you are so blessed to have caught this a lot sooner. Mine just blew up overnight. I went to bed that night and when I woke up my breast was three times the size of my other one. That was something that even a mammogram would not have caught in time. So I was diagnosed with a stage 3 and I'm now in stage 4 and that was with the chemo treatments. I also have my brain MRI that day so I'm curious to see if there are any more pop-ups. I know I've had a headache every day for the last couple months which really didn't require anything because they were so light, but they continue to grow more and more intense to the point where now I get really bad migraines. Marla thank you for your advice on the ice cap. That seems to help calm down the migraines.

So that's it for me for today ladies. Y'all be blessed and have a great day! Hugs

claoh

Sadie, I can't imagine what you are going through and yet your are so positive and supportive. Thank you for answering my call several weeks ago.

I was just told to use a diabetic sock because of the low compression as it is very slight at this time. Didn't have a measurement or anything. I'm not even sure if I should wear it all the time? Some questions for my next nurse visit. Also, your mention of "lymph" - never equated it with an actual substance!!!! Will look that one up. The tattoo looking sleeve sounds interesting for down the line : )

We are on track to go on our trip this afternoon. With my blood pressure spiking I wasn't sure I should go but today it is normal. I took one of the super pills last night as it seems to spike during the night and so far so good. One brother did call to say his wife came down with covid so don't know how much time we'll spend in his city. We'll just wave to Linda from afar. Does mean we'll be getting a motel rather than staying at their house. If brother is still able, he can join us for a couple things that were planned.

Oh, with all my talk of not seeing you I want to give you a heads up that I don't know if or how often I will be able to be on line. I'll check if I can use my tablet, hope so. (I'm not real computer savvy!!) I will be returning on Friday the 22nd. Know you are both always on my mind and in my prayers.

Love ya!!!!

marlakeeth

Good morning Ladies,

I really look forward to your postings and it seems that everyone will be off for a few days. Sadiej and I are having chemo treatments and Claoh is off to visit family and friends. I admire both of you for continuing to press on because we really have no choice!

Glad the seat cushion helps Sadie so sitting is a bit better. It can be so painful. And yes I am glad I caught it early. My next concern is "What if the chemo did not shrink it?" I have an ultrasound scheduled for next month after my 4th and final (I hope) A/C treatment. Then on to the next poison chemical Taxotere. Either of you had Taxotere?

That is all for me and checking in when I can, I think I will be down a few days but will be back!

Take care both of you esp Claoh!

claoh

Good morning. Hope both of you are OK. I am enjoying seeing family but seem more achey, both my brother and sister in law came down with covid so rather than go that way we went south to Ohio to see my husband's family. We did see my younger brother and his clan in Michigan. It has been very pleasant surrounded with lots of people and laughter both places. Really no mention of my fate at either place. We will stay here couple days and then head home.

Going back to my acheyness I think between the high blood pressure and a bit more pain, my mood has gonlittle down. Between the loads of laughter I feel a little more melancholy. Will share this with my hospice nurse. I feel it may be something we all share as our individual journey lingers.

How are you feeling Marla? I have not taken taxotere. How is it different than what you are currently taking? Same or different side effects? Did you find the site for the bangs? I looked it up again, the cost was more than I remembered, but did like them under a hat or scarf.

Sadie, how was it at Cleveland Clinic , what were the results?

marlakeeth

Good morning Ladies!

Claoh glad to hear that you had some great family memories and a good catch-up with them. Yes, I can understand a bit of melancholy for sure.

As for me, I completed cycle 3 of A/C and it hit me pretty well as far as energy levels. Nausea is still hanging around although the Compazine helps. I have no energy to do anything and spent most of yesterday just lying around. Did want to read or watch TV, nothing. Today is a bit better. Woke up feeling better. As far as what the chemo nurse said the Taxotere side effects are pretty much the same. Poo on that. I did find the bang site, thank you.

Sadie, want to hear from you.... hope you are okay.

Sadiej

Good morning ladies!

Sounds like everybody is in a funk right now. I just got to the point where my exhaustion finally caught up to me and I've been sleeping ever since my appointments last Tuesday. I think I might have even slept in the dressing room while I was getting ready for the MRI LOL. This morning I'm finally catching up to my exhaustion and feel a lot better. Marla I have never done taxotere, but I did get a chuckle out of your comment "poo on that" :)

So right now I'm waiting for the radiation oncologist that I met Tuesday to set up my radiation appointments. It will be 5 days straight of radiation to my tailbone area. I made sure that I have some CeraVe. It's the cream that I used the last time I had radiation. I didn't get burned I just got a deep tan because I kept using that after each treatment. In fact I started calling it my targeted tanning treatment lol. Hopefully it does the job for me again.

Claoh i'm a little bit concerned about you. I totally understand you're being melancholy especially hanging around your family. I try real hard not to look in that direction because it would spin me off into a depression which I do not need right now. Granted, I got a little anxious when I saw that I had no more chemo treatments but also nothing to replace them. I try to keep my mind busy with things I like to do like jigsaw puzzles and watching old westerns. It's hard when you can't see ahead to know what you will be dealing with.

Time to throw a little levity to this conversation. Why were the dogs named Rolex and Timex? Because they were watch dogs. Okay, I know, that was really bad LOL.

And on that note, I think I'll just sign off for now haha. You two have a blessed day. I pray that the funks that you are both in be replaced with joy and happiness. I know this is hard on all three of us but at least we have each other to lean on and for that I am very grateful.

BTW my brain scan came back clean!

claoh

Awesome news on the brain scan Sadie!!!!!! I was wondering, who will get to see your new tan : )

Yes, had a great trip but also ready to get back to our regular routine, at least for a week. I have two more short trips in October. I realized in the airport that I would be on my own for the next trip, without David to handle all paperwork and backpacks. Tiny little panic attack, but will get through it. Looking forward to reconnecting to an old friend haven't seen in about 40 years. We were besties in middle and high school.

This coming monday the renovation on our master bath will begin. As I'm writing this, I realize we are no where near our "normal routine" this month! The renovation has a window of 3 weeks before our trip to our son in Missouri.

I looked up Cleveland Clinics in Florida and the vast majority are on the East Coast. Anticipating a meeting with you Sadie when you get that RV.

Marla, hope you are continuing to feel better.

Thanks for all the pick me ups you guys offer. Blessed with your companionship.

marlakeeth

Sadie, I am overjoyed that your brain scan was CLEAR!!! huge, just huge!!!!

What are your favorite westerns? I love westerns and grew up on them. I watch Gunsmoke, Laramie, Rifleman, Paladin, Wanted Dead or Alive, and of course John Wayne, and Randolph Scott in about anything. What comes to your mind?

Claoh, what is your bathroom renovation all about? What are you doing?

Going to the airport alone would cause me some anxiety too! Who will you be visiting? friends from high school?

I am 6 days post-chemo #3 and finally feeling like myself. I went for a walk yesterday and drove to the store, post office, and bank. That was enough for me, came home and had a 2 1/2 hr nap. Wow! Finally, the nausea has backed off into its little corner of the room. Hope it stays there.

I had another support group meeting last Wednesday, and thank goodness it was much better than the last 2 times listening to one young girl cry and cry. So depressing! Can't say that I learned anything, but one of the women, this is the second time she has had breast cancer and chemo. Interesting that everyone has had different treatments.

Good for now, hope that you ladies have a joyful happy day!!

claoh

Will be visiting my "best" friend from youth. Stood up in my wedding, but then I moved away from Michigan to Texas. She moved to Kentucky. We visited her a couple of times when passing by to visit family in Ohio and Michigan, but then drifted apart, except for Christmas cards. A couple of years ago her husband passed and I called to touch base. We instantly connected and have been saying we need to get together. Well, the cancer has prompted us to do that. I will just be seeing her for the two days, and possibly meeting her daughter who is in her 30's.

The bathroom demo is resizing an older 4 ft shower to a 5 ft shower with intent to be easier to get into as my cancer progresses, and possibly needing assistance. Will also put in a grip bar. I am also going to have the shower head on one side and the water control on the opposite. Thinking this will be more convenient for whoever may assist me. The day after we had the contractor come out my old shower door started falling apart and I have to be very careful when sliding the door shut that it doesn't fall out!! Great timing : )

Do you share in your support group Marla? How many are in it? Was the young girl who cried at this last one, or just more quiet? I looked for a support group earlier but wasn't successful. The one at our local hospital was only for their patients. Can't imagine any finer support than you two have provided me. So thankful for our connections. Checking every day is so vital too. You're only a click away rather than waiting for a once a week meeting. I am in no way belittling your group Marla, just trying to express how wonderful having you two is and I am so grateful. I hope you are getting great support in your weekly meeting also.

marlakeeth

I totaled understand about the group support meeting!!!!

Two of the 3 meetings that I have been to were just depressing because of this young lady. Seemed like she was treating us in the group like her therapy session which is different than a support group. The group leader/moderator just kept quiet and let her go on and on.

So that being said, where are you located? I think you said Florida, right?

There must be some virtual cancer support groups that you could check out.

I am so glad that we can check in on each other everyday, not weekly!

Is your shower going to be a walk in shower? I am assuming so. Sound good too!

claoh

I did enter a virtual cancer support group and they were very grounded also, close like we are. Didn't feel the urge to continue though. Might have if I didn't have you and Sadie. Very satisfied.

It will have a slight edge. Did not opt for the zero entrance. Figured I wouldn't put in a wheel chair or such anyway.

It will not be attached to a tub.

Yes, I am in Florida now. Have lived in about 9 different states as my husband was career military. Enjoyed the moving and seeing different areas. No regrets.

Sadiej

Good morning ladies!

Claoh, I'm so glad that you have so many people, both friends and family loving on you. Their support and their love is worth its weight in gold. That's how I feel about you two. I would have felt so isolated without you and Marla.

Marla, is your support group part of the American Cancer Society? I know they have support groups along with helps like free wigs and free bras and financial aid etc.

Claoh I am happy that you're getting a shower upgrade. It sounds like it's going to be a lot more convenient for you. Be careful of that old shower door, there was a time when they made them out of just glass instead of tempered glass. I would hate to see that fall and shatter if that was true. Are you going to be putting in a built-in seat or will you just be using a bench? I've been using a bench for years. My peripheral neuropathy won't allow me to stand for very long or walk very far. In fact when I go to the Cleveland Clinic I always grab a wheelchair.

Marla I don't think I have a favorite western movie per se. I just like the ones that have a lot of action. I don't really like the ones that show the "damsel in distress" type either. I guess I'm too much of a tomboy lol. Hope I didn't offend anyone by using the word tomboy but I'm too old to care about nouns, adjectives, pronouns and such anyways. :-)

So I imagine that I will be hearing from my radiologist next week to set up an appointment for my cat scan and appointments for radiation. I'm not sure but I think I am already feeling the effects of the cancer in my tailbone. I'm having an even more difficult time standing up and trying to get around but this morning when I tried to get up it felt like somebody had driven a spud bar all the way from the bottom of my heel up through the length of my leg. It was incredibly painful. Then on top of that I had two bouts of just bile regurgitation. That seems to be happening more and more and I'm not sure why because it's been a while since I've had chemo. I guess I get a chance to ask the gastroenterologist when I see him on the 2nd. Another thing that I did last week was to stop at the cemetery and make sure that everything from the opening to the closing was taken care of. Now I just need to stop at a funeral home, get that taken care of and then make sure my will is up to date. It's amazing how expensive this stuff is! My brother-in-law told me that funeral homes have insurance to pay for their part so I need to check that out. Once I get this all taken care of and wrapped up so that I don't leave this stuff on the shoulders of my husband or daughter I can go on living without worrying how they would handle all this. My niece told me to make sure that I had all my bank accounts and credit cards in a file that would be easy for them to take care of. I guess when my sister died she didn't have that information and they had to scramble to find it all. I don't want to do that to my husband or to my daughter. I realize that this might be a morbid conversation for some but it's a fact of life and given my situation (as well as Claoh's) I just think that it's wise to make sure that I have all my ducks in a row so to speak. :-) Granted right now I just have pop-ups in my body (because of the cancer in my lymphatic system) but you never know when it could actually become full-blown. It will be a relief to get this stuff done and behind me and then look forward to whatever the future brings, including spending some time with two of my wonderful friends on this board. My oncologist already confirmed that my chemo (along with my pet scans and brain MRIs every few months) was for maintenance only. I really appreciate her openness and honesty as that helps me to make decisions also.

Okay ladies, that's all my news for now. I pray that you have a wonderful and blessed day today! Hugs!

claoh

Sadie, my eyes water as I read your last paragraph. I have been wondering how you're taking the news of maintenance only but have been reserved in asking. It is important to share what's happening and your feelings. You have been sharing your concerns for my future, and now I am reading how that is affecting you.

My husband and I have also been preparing for when he is on his own as far as paper work. Several years ago we both got long term care insurance policies and definitely plan to use mine to bring in home care aides as needed. We also signed on for cremation four years ago. I want my ashes spread on a lake behind us but do need to make plans to have a couple pontoon boats brought into the lake, as a marina on this lake we used three years ago for recreation has closed. It may sound silly, but I also got a plastic sleeve and bought a 22 inch plain necklace to carry my DNR paper as well as contact information to reach my husband and hospice. I don't always carry my purse, and wanted to be sure anyone trying to resuscitate me sees the info when they open my blouse : )

I've told a couple of my friends already that they will need to divide up my house plants as David will not be taking care of them : ) He has a "rock garden" in our front yard of just small white rocks. Won't let me plant anything in that : )

As for the shower, like you Sadie, we plan to use a bench when needed.

I also am a "tomboy". Grew up in a neighborhood where my best friends were two boys living behind me. Climbed trees, jumped off garage roofs, ran around our three backyards playing "army". I would help my dad with outdoor chores and let my sister do the inside chores - both satisfied : ) Was just thinking the other day about a time when someone asked me why I always had my hands in my back pockets in my younger days. Guess I thought it looked macho!

Look forward to your next posts!!

Sadiej

Hello Ladies!

Claoh, don't ever be"reserved" in your questions to me. Don't forget that this board is all about choices and each one of us has chosen a course that needs to be talked about. I am fine with anything that you need to ask or any opinions that you may have. You too Marla. You've been pretty quiet lately. I hope you're all right. Besides I miss your wonderful sense of humor! While!you were talking about nausea in the corner I was envisioning sit stay! LOL What a blessing it is to have your sense of humor around!

So the Cleveland Clinic called me early this morning to set up my first sets of appointments this coming Friday. The first one is with the nurse and the second one is for simulation. What they do is they run you through a CT scanner and simulate, or create a model of your sacrum which is the triangular shaped bone at the end of your spine. They will also mark your location when they dio the modeling so that the next time I go in I will be in the exact same spot for the radiation. Also when I go in there this Friday they will give me my five appointments to add to my calendar. It will be one radiation per day for 5 days. There will also be a follow-up in about 3 months to make sure they got it all and to check for any new growths.

So this is where I'm at. They have stalled the incurable breast cancer and even made it shrink a little bit, used gamma ray on the incurable brain metastasis and they're getting ready to do radiation on the incurable growth I have on my sacrum. This is what maintenance is all about for stage 4 triple negative. Through their maintenance they are extending my life while trying to give me a quality of life. Like I said, this is all going to be whack-a-mole from here on out. At least I get to tell you girls about all the really cool toys they get to use on me lol. I'm definitely learning a lot through this process.

That's it for me right now ladies. Marla looking forward to hearing from you! Hugs!

claoh

Not a lot of news today. Did see the hospice nurse today and she is contacting the palliative doctor to see about me using Tramadol rather than the Tylenol. After researching the product I'm not feeling I'm ready for the higher narcotic pain reliever yet. However the nurse feels it is less dangerous for my body than taking the max of Tylenol each day. I'm feeling like I'd like an actual doctor visit prior to taking Tramadol but we'll see.

marlakeeth

Good morning ladies,

Been quiet these last few days, just battling the nausea. Trying to rest more often and that seems to help, but I am always so busy that it is hard to slow down. Not getting up at 6:30 am and staying in bed until 8 or 9 am is new for me. Too many years of getting up early either to work at the hospital or teach school.

I think the high doses of Tylenol can be harmful and less effective over time. Maybe a drs. opinion would be a good idea.

Well, I have learned something new. I spoke with my oncologist since I have developed a pattern of chills and sore, very hard-to-swallow sore throat. I do not have tonsils. The reason my lymph glands in my throat are swollen is they are catching all the dead cells including dead cancer cells from my body. Treatment, drink lots of water to flush it all out. It sure seems to be a regular occurrence. Do any of you girls have this?

Not much new today, I started to write yesterday but have been busy with car insurance and home insurance. I have had Farmers for the last 45 years and their prices have skyrocketed, So I checked with AAA and they were half the price! So I have been busy taking photos of kitchen, bathrooms, hose exteriors etc. At least it kept me busy and not think about the nausea. 10 days post chemo #3 although physically I feel pretty good.

I have my support group meeting today and will let you guys know how it goes.

I have a joke for your ladies,

Enjoy and talk soon! love to you

claoh

You lightened my heart Marla. Have withdrawal when you gals aren't on and it was only one day!!!

Guess that's a good thing when we don't have news to share, but always fear something bad may be the reason.

Love your jokes, and this should be a regular sign off. Here's a favorite from my son when he was young.

WHAT DINOSAURS ARE TERRIBLE DRIVERS.

THE T REX!

marlakeeth

Hello ladies!

This is the second day in a row that I feel like myself! Hooray! I hopefully will have the rest of this week and next week to feel good before #4 chemo. Not a lot to report, however, I did have my support group meeting yesterday and it was pretty good. Most of the conversations were about treatments, mastectomies, and how a few of them are doing post-surgery. I did not have much to add since I am not in that group. There is a new lady who just joined and I think that I am closer to her in the treatment plan.

How are you guys doing? I know that this is Thursday and Sadie is going for her simulation Friday. I am sure that there will be much to report as her style is to tell the story. I love it! Reminds me of the "You Are There" program years ago.

I don't have a joke, but a quote from Ray Bradbury, " Creativity is like a cat, it just follows you around for a while."

Much of my creative plans are just like that, they follow me around until I can make it happen!

Take care my friends and I too look forward for your posts!

claoh

You impress me Marla that you make your creative ideas happen! I have creative ideas but also am a procrastinator so many don't get past my mind. Guess that's the cat : )

Today woke up with a little bit of concern. Mentioned earlier in week to my nurse about a red spot on my breast where most of my pain generates from and thought the tumor might be pushing against a nerve or blood vessel.

This morning I felt the bump is more pronounced and concerned it might be "fungating" or "ulcerating" which are fancy words for possibly becoming an open wound. I think it is more concerning because of my trip next week and I want to be prepared if it happens when with my friend. I may be concerned over nothing, but would like to know what the experts think.

I called my nurse asking her to call back to talk some more about care should it happen. Would also like to see the palliative doctor if possible but only have two week days before trip so don't think that will happen.

Will keep you posted.

Take care.