Choices

marlakeeth

Well, I know that was a long comment, worthy of Sadiej!

Yesterday I attended the support group and was saddened. most were triple negative and much younger in their 30's and early 40's. Several had young children 7 and under. One lady did most of the talking, an older woman who just turned 65. A few Asians did not talk much, just listened. One young lady was full of energy and I could be friends with her, but the other 33-year-old was sooooo depressed. I guess she is a musician of sorts and loves to be "free" outdoors and does not like to be couped up in her appt. So, a bit depressing.

For me, I have been feeling better almost like nothing is wrong! So I am good and enjoy you reads!

This is the best group to be with!

take care girls!!!

claoh

Thanks for info Marla, I will look into it. I was hoping to find one without the back hooks for sleeping. Thought that would be more comfortable. The ones I got are one piece pull overs. Not made for support. Took me a while to make the first choice and like the concept, but do feel they could be a little more tighter.

Sadiej

Morning ladies!

Here's my standing ovation to the both of you for the information that is much needed on this board! Marla you're correct, you're definitely in line with my long-winded blogs but at least yours is a lot more informational than mine lol. Although I'm still not getting the difference between a sport bra and a support bra. I wear sport bras all the time so I'm not quite sure how all this works. :-)

So tomorrow is my second PET scan. I'm still really on the fence about what I think they're going to find or not find. I was talking to someone yesterday whose mother had triple negative. She described it perfectly when she said "it's a demon unto itself". I may get a chance to talk to her again. Her mother died from the triple negative but I still think she has a lot of information that would be helpful.

So I just got the phone call from the nurse where I'm getting my pet scan done at. Got to do 5ea. 8 oz bottles of water and lots of fruits and vegetables no carbs. Sigh. She's letting me drink the rest of my coffee though which puts a smile on my face. (Love my coffee!) Looks like today is going to be basically sleeping for me. I've been a little more tired than usual anyways so maybe I'll catch up on some of the sleep that I think I need. It's hard because the more you sleep the more you want to sleep and I don't want to get into that mode. I just want to give my body enough to say that I slept only for that and no more. How are you two handling sleep? There's a subject we haven't broached yet even though we have all mentioned it here and there.

All right ladies that's it for me for today. I don't have much to say. Y'all be blessed and have a good day.

marlakeeth

Another day of warm sunshine!

Going to the chemo clinic this morning, and the doctor. wants to draw blood from my port since I have had a red, swollen feeling in my throat. Dr. wants to do a blood culture. I think that I don't need it, I have no fever or other symptoms, but what the heck. I have nothing to lose.

On the sleep issue, many days I have a nap at least once during the day for about an hour. Sometimes just a cat nap for 15-20 minutes. When I go to bed, I read until I am really sleepy and hopefully sleep through the night with one or two bathroom visits. Lots of water throughout the day and try not to drink much at all after 7 pm. Your body I think is so busy throughout the day it holds on to the water until you rest at night. Then it is all systems go to clear out the water!! lolol. Anyway, I think so. Sometimes I cannot sleep so I take an Ativan and that helps me sleep and shut off my brain from thinking.

Enough about sleep for today, what about you girls? I feel pretty good today, but keep thinking about the young girl from the support group who feels couped up. I am not sure but I don't think it is helpful for anyone to listen to. She is so very depressed and alone. I have never been in a support group so I am not sure what to expect.

I will attend again next Wednesday again to see what happens.

Sadiej praying that everything will turn out okay for you and your PET scan. That is all I have for today.

claoh

Enjoy your posts. On sleep, every day is different : ) I usually get about 6 hours at night and catch one more in the afternoon. I was surprised that I needed a nap this morning when I got a good, no bathroom break sleep last night.

Hope both of you receive good reports on your procedures. Not a lot to say on this end.

Sadiej

Hmmm...

Okay so my sleep habits are nothing like either one of you. But let me start back a little bit. Just recently as in within the last few months it has gotten extremely hard to swallow. I choke on water if you can believe that LOL. Breathing is hard too but my oncologist said she'll take a look at all that when she gets the pet scan results. As far as sleep, this is the first day that I was actually awake all day. I usually sleep the entire afternoon and all night. I just don't have that energy. It could be where I am in treatments. But seeing what you two wrote makes me realize that something may not be quite right. :-) That's another reason I like to do comparatives, I can catch things that I wouldn't normally think anything about. Really appreciate you two stepping up to the bat on that one.

Marla that girl that you talked about that was in the support group... I don't know anything about it but it could be that because she is so alone that she does go to support group to feel like she's part of something. She may be a downer right now but you don't know what would have caused that. I would think that feeding her positive things, complementing her etc would do her a world of good. Even letting her know you're there if she needs to talk would be important. You could also invite her to the boards. We have no rules and regulations as to who joins. Everyone is included. Those are just my thoughts about the whole thing. She obviously has touched your heart somehow. And you don't have to accept her negatives, and for that matter you don't know if she'll accept your positives. Like I said those are just my thoughts. You will have to decide for yourself. But whichever way you choose, keep that ray of sunshine coming to this board! We love it here!!

Talk to y'all later

Pat

Sadiej

Hello Ladies!

So I got my test result back from my PET Scan today and will be going over it with my doctor tomorrow. Good news is the breast tumor and the lymph nodes have shrunk a bit but there are also three new places that show metastases. All I can think of is whack-a-mole LOL. We get a couple of them taken care of and the next thing you know boom there's some more. I talked with my husband about the results and we both agreed that I will be very tired as it is stage 4 but to be careful that I don't wear down. There's a big difference between being tired and being worn down. I think I will go grab myself some bananas to help. Anybody else have any other ideas? Anyway that's basically it for me, tomorrow is my chemo day so I will probably talk to you on the flip side.

Take care ladies

Pat

claoh

That is both good and watchful news Sadie. Look back to your list of 'go to" activities to keep you from not getting worn down, especially the dude ranch and your horse encounter.

This weekend was a bit different as I was fighting some serious high blood pressure. Took extra Lisinopril to get it down and was ready to head to emergency room but also didn't want them to put me in the hospital for "monitoring". Finally did call hospice even though I didn't feel I was a "crisis" case and it was Saturday evening,.

They were very sweet, as usual, and one of nurses gave me the tip of lying with feet/legs up and such. Called back hour later and the blood pressure was down enough I didn't feel need to go to hospital. She offered to come first thing Sunday morning but I mentioned the PA was coming this morning so I felt I could wait and she agreed but to call if I needed her. PA hasn't arrived yet but said she would between 10:30 and 12:30.

Along with that story, there is a side note. I have befriended a lady in her 90's who lost her husband a couple years ago. She has also lost a daughter to cancer, and has had some breast cancer herself. I have not told her of my situation as I think she will be very distraught. Well, when another acquaintance told her I wasn't at shuffleboard because of high blood pressure, she immediately came over to see what was the matter. She was shaken and I just assured her all was well, I have had high blood pressure for many years. She finally calmed down and as she was leaving said "I can't lose you." I mentioned to my husband that is why I'm so afraid to tell her. I have spoken to her son and he feels she is strong enough to bear it but I'm still concerned. I would like them to be near when I tell her but also don't want to impair their visit. He lives in Maine and is coming in October for a visit. The family is visiting her for an internment of her husbands ashes, which has been delayed twice already since his death. How to I lay this on her plate?!?

marlakeeth

Good morning ladies,

It seems that we all had difficulties this weekend. Mine were very very stingy eyes Friday, Saturday and Sunday, no matter what I did. I have dry eyes anyway and so I have several kinds of drops, but to no avail. The doctor told me to put ice on my eyes which helped a great deal. Just another tip if this happens to you.

My daughter-in-law was going to come over and take me to lunch, but the doctor had called me with my blood results and my white count was very low, and should not be around people. I was very sad since I had not seen my grandson who is 6 for many months.

Over the weekend I watched several YouTube videos on how to use scarves to tie around your bald head. I got a really good idea from a lady who has had alopecia. Just a half yard of fabric sewn or tied into an infinity scarf and wrap around your head and you can use colorful head bands for a pop of color. Many compliments! If you are interested in watching the video I will find it and post it here.

That is about all for me for now.

claoh

Marla, Sad to hear you had to cancel lunch with daughter-in-law and grandson. Did you need to get a shot to raise the white cells?

Have you ever seen the headband with just "bangs" to wear under a hat or scarf. I had ordered one from Godiva wigs when I was contemplating chemo. Liked the look very much.

PA sent a prescription to lower high blood pressure quickly. Then my nurse also called to say she wanted to come tomorrow to check me again. Haven't got the prescription yet, but hope to this evening or tomorrow. It is better, not in a danger area like the last two nights.

marlakeeth

Morning ladies!

I am writing this morning's note to you guys while I eat my Cream of Wheat cereal to keep my stomach happy.

No real nausea this week thank goodness, but this coming Friday, it is on again. 3rd dose of chemo.

Claoh, have you seen the headband anywhere else? Seems like a good idea. Thanks for the information. I hope that your blood pressure is under control now. Does the Lisinopril make you cough? It is one of the side effects.

After two days of putting an ice pack over my eyes, finally, the stinging has gone away. Don't know why, but there you are. Did you know that the only part of your body that doesn't freeze is your eyeballs! Just another trivial note

for you gals. I hope that Sadiej is feeling better and can go and be a horse whisperer again. My long-time girlfriend and I had lunch together and had time to catch up on everything. Did my soul good.

That is all for me today, looking forward to more thought and stuff from you guys.

Sadiej

Morning ladies!

If there was a way I could reach through this to give you both a hug I would. The difficulties you're going through both saddens and concerns me. Claoh I really hope that you get your blood pressure under control. I'm also glad that they have a prescription to help you with that. It's very concerning. Marla I am so sorry that you did not get time to spend with your daughter-in-law and grandson. Did you set up another time for when your white blood cell count is higher? Hearing things like what you and Claoh are going through makes me realize that my troubles aren't as great. Not that they are important but I just can't imagine what you two are going through right now. :(

Like I said, I don't feel like mine are as important as yours but I figure I may as well go ahead and tell the board what's going on with me. Yesterday I did not do chemo because my platelet count was too low. We'll see what happens next week when I go back in for chemo again. As far as the cancer is in the tailbone which my oncologist verified that it is definitely cancer in the bone, I will be getting radiation for that. For the problem in my throat, I am being referred to a gastroenterologist who will check it out to see if there is anything there. (Sometimes I choke on something as simple as swallowing water.) She also noted that the small Islands of cancer that are cropping up are the same cancer with genetic changes to try to get past the chemo. Haha it's not going to work this time because we're going to use radiation on it LOL. I'm pretty sure it doesn't have a genetic change for radiation. :-)

So my oncologist verified that the chemo I am taking is for maintenance only and I basically will be taking it for the rest of my life. She also set up pet scans for every 2 months to check for any more crop ups. She liked the term I used, whack-a-mole as this is what it's really all about from here on out. As far as getting my breasts removed, that's pretty much out of the question. She told me that because I am getting these metastases cropping up that I would have to prove 6 months of stabilization (from the chemo) without any new crop ups before I would be allowed to do that. She's also interested in the brain MRI that I have coming up on the 19th of this month and has set up an appointment with me the beginning of October to go over those results. She did verify that if the chemo is not working as well as she would like that she does have other concoctions that she could use.

So my husband and I have talked about this. I think what we will be doing after I get my paperwork in order is to sell the house and get an RV to travel around in. My oncologist said as long as I was near a Cleveland Clinic that she could continue my chemo. I think the first place we're going to go is Florida. Like I said, I just need to be close to any of Cleveland Clinic satellite places. There are quite a few of them along the east coast and one in Las Vegas Nevada so I have a lot of choices. I'm thinking springtime before we get the RV but that's just me. Best laid plans and all if you know what I mean.

All right that's it for me right now ladies. I really pray that things turn around for both of you. It's tough enough dealing with this without life throwing both of you curveballs.

Be blessed and have a good day. Hugs.

Pat

claoh

Hello Marla, had a chuckle with your tidbit about eyes not freezing : ) I have not seen those bangs anywhere else but Godiva. They were very quick in sending them. I think if you put in Godiva wigs for a search they will come up.

Glad you had lunch with your long-time girlfriend.

No news on the blood pressure but that is good as it is back to "my" normal, which tends to be higher than the dr's like. I haven't noticed a cough from Lisinopril. I've been on it for five years, but a very low dose. I'm a bit more concerned with the new drug that's being prescribed. Because it is fast acting I don't want it to lower by BP too much as my body is used to a higher reading. Don't want to get light headed or faint because of it. It is really only to use when the BP is over 200 and that doesn't happen often. Nice to know I'll have it and don't need to run to the emergency room unless it doesn't do the trick.

I also hope Sadie is ok. Little concerned that she hasn't posted. Sadie, if you're reading this give us a thumb's up (or have your husband do so)

marlakeeth

Pat!

You have taken the words right out of my mouth! My husband and I want to buy an RV and travel around as well!

But not until next year when I am finished with all of this. For some reason, my brain is thinking that once I am done with chemo, surgery, and radiation, I will be cured. I am hoping that this is true. No one can predict the future beyond that. Maybe I am living in my own bubble, but for now, that is where my mind is. I hope so. Tomorrow is another Support group meeting and I hope it goes better than the last. I shall report to you guys, cuz that is what we do! Talk soon.

claoh

wow, we were typing at the same time!!!!

Sadie, you are so gracious. There is no way I am going through anything greater than you are!!! The RV idea is awesome and when you get to Florida we will have to meet !!!!

Lots of exclamation points going on : ) I am both overwhelmed with your prognosis and joyful that we may meet one day on Earth.

Hugs and Prayers going out to both of you.

thelazyaranch4

Hi ladies,

Just wanted to give you all an update. Surgery went as planned last Wednesday (only ran about 3 hrs behind, talk about anxiety!!) I'm healing well and will hopefully get the drain out tomorrow. 

I received the pathology report tonight and margins were not clear for the axillia tumor. The two lymph nodes removed were negative. My head is now spinning once again. I have no clue what will happen next. My oncologist appointment isn't until next Wednesday but I will be calling tomorrow morning. 

hugs to all💕

claoh

Glad to hear from you Lazyranch. It sounds like good news to have negative nodes. Hope the oncologist continues along that vain. Please keep us informed about your progress and decisions.

claoh

Where are you guys - I'm have withdrawal issues : )

Working on our trip for tomorrow and a couple of issues cropped up. First, when we got ticket notification they had changed our flight from 6 AM to 5 PM. At first we were going to try to change it, but my brother isn't available until 7pm any way and we don't have to get up at 3 am to get to the airport in the morning.

The second issue is my ongoing blood pressure issue. Seems every night it goes over 200. I did get the prescription for the pill that lowers it quickly and do use that. This morning I work up more painful than usual and the high pressure and wondered if I should make the trip. Now I am back to normal and feel all is ok. I was thinking to take the pill this evening before I "need" it, but don't want to take if I'm in good normal range. Perhaps that is why our flight was changed "miraculously" to evening. By that time of time of day I should be regular. Everything has a purpose : ) Will see what tomorrow brings.

marlakeeth

Claoh!

I hope that your blood pressure will remain within normal limits. Maybe the excitement of your trip has something to do with it or the anxiety. Either one can make it go high and be concerning. I did not think I was anxious or nervous, but my body said it was when the doctor put my port. My hands were sweaty and my heart was racing even though in my mind I was calm. I hope that your trip[ goes smoothly.

On another note, yesterday Wednesday was my second time in the support group. As usual, the young lady I spoke about last week spoke for over 30 min. again and was still crying and depressed, but not as much as the week before.

I am going to give it one more try as I had agreed to before I make a change to another group. I was depressed all evening and it does not help me at all. Tomorrow is chemo day 3 and I don't want to go, but I know I have to. I listen to your stories and know I can do this. You ladies help me a great deal and I wanted to let you know that!

I have been enjoying nausea-free days lately and am happy about that. So on that front, nothing is new.

I have to pull myself up by my boot straps and get on with it.

Sadiej

I'm here LOL. No withdrawal symptoms Claoh. :)

I'm in a lot of pain today from the cancer in the tailbone and trying to find a good way to sit that doesn't hurt. I'm really hoping that lazyranch's next appointment shows encouraging news for her. And Marla you're so funny! Maybe we will run into each other while we're out there RVing lol. I have to stay on the East Coast so that I am near a Cleveland Clinic so it looks like the long travel time will be yours.

Claoh I did a little research on flying with high blood pressure and was wondering if you had compression socks for your trip?

Marla how did the support group meeting go?

Okay ladies, seriously I am in a lot of pain right now so I am leaving this short and signing off. Y'all have a blessed day! Hugs