Choices

...sooner because I can see that I think we would get along really well. Sorry about the broken up message I accidentally hit post LOL. Obviously if there's anything I can do for you at all then you just need to ask. I don't understand why life has to be so difficult and why we have to pick our paths like this. It's pretty much been thrown at us and somehow we're supposed to go through it like everything's okay when you and I both know it's not.

Have you found palliative care yet? It's really helped me a lot - I'm actually getting full nights sleep I'll go this morning I woke up around 2:30 hurting but I didn't want to take my meds just yet so I waited until 5:30 to take them. Would be nice if you find someone that will actually take care of you and who you are and your decisions. If I tend to ask hard questions I don't mean anything by them and I hope I don't offend you. This is a learning lesson for me also. Remember I was trying to decide whether it take your path or the one I'm on. Like you I always recheck my decisions due to our conversations. Yes what my family went through was very hard. I remember my sister at the end. She had just had a radiology treatment to her brain and I really think that was what did her in. I remember going back to her bedroom and her laying there. When I went to take her hand she tried to speak to me but couldn't. She mouthed the words that I couldn't quite catch. I did a quick prayer and told her to be at peace. It wasn't until hours later that I realized she said "I want to go home." She had had enough of the pain and didn't want to be on this side of heaven any longer. It was within that month of her radiation treatment that she died. It's sometimes hard to let go and I know that people around us that love us can actually make it so we don't. I have seen that many times, more than I would have liked. I let my sister know that it was okay and I was okay with letting her go. I think that's the hardest part on people that are left behind. How does someone say it's okay go and allow them to die? Sorry I'm getting a little philosophical here but I'll never forget that moment of time with my sister in the bedroom. 😭

Life stinks and I know that while you're in heaven I'll still be down here struggling with this crap. That's why I think your decision it's just as wise a decision is mine for personal reasons that each of us has. Perhaps we'll meet on the other side. Big {{hug}}

Pat

Hi Claoh

After a week of ignoring it, then researching it, then deciding did it really was time for me to start talking to people again LOL. So you would be the first person that I really wanted to reach out to and hope you're not upset it my absence for the last week. I've got my chemo worked out which will start on the 10th of July. She's giving me a chemo that will be easy on my body and a regimen that will be 2 weeks on one week off repeatedly for six sessions. I also have to see the brain doctor the following day to set up surgery for the metastases he found in the brain. It's very very tiny, about a 64th of an inch, so I'm assuming he's going to be going in with a gamma knife even though I don't like the face mask that they put on you cuz I am so dang claustrophobic lol.

How are you doing? I thought of you everyday and was hoping that you found someone in palliative care to help take care of you during this time. I really feel for you and it's hard to even think of what you're about to go through. I wish there was a way that none of this would have ever happened to either one of us but is my mom always said, "if wishes were horses biggers would ride". I guess that's true in this case too and I will have to learn as I worked on it this week to accept where I'm at and allow myself to cry once in awhile. I had a one day cry last week added into all the other stuff of hiding and pretending nothing was going on and trying to deal with new information etc.

Anyway let me know how it's going for you sweetie. I hope this finds you in a comfortable and peaceful spot.

I also hope that anybody that has this in the future will be able to see our hopes and dreams and fears and I hope that somehow this will help them through this just like you and I have each other's friendship. God bless.

Pat

Hi Claoh!

Man it's hard to take with ET LOL. Much easier is in text to talk. Took me about three tries to rate your greeting.

I'm glad you're so low on your pain levels. I've got some serious medicine from my palliative care doctor to help with mine. Yesterday was hard. My arm has been swollen up from the start and yesterday it was so swollen up it felt like my arm was broken. Much better today and I will take that as a positive sign. I have an ultrasound coming up for my thyroid. They saw something on my pet scan for my thyroid and my sternum. They haven't said much about any sternum tests but they seem to be concerned with the thyroid. I'm starting to feel like a lab rat by the way LOL. You got a bazillion labs and doctor's appointments and of course my chemo. I was supposed to have surgery on my thumb on the 7th but I seem to be having issues with healing. I had my last couple chemo toenails taken off (from previous chemo) on June 16th and they still haven't healed up properly. I got some antibiotics last week through my primary care doctor to help. I wrote my doctor concerning the upcoming surgery and told him that my ability to heal seems to have gotten lost in the shuffle LOL. We'll see what he says.

Sorry about dropping off. I should have told you I just needed a chance to run away for a week. Sometimes it gets really overwhelming and then just need to shut down for a while. I think next time that happens I'll make sure to send you a note telling you I'm taking a sanity break. 🤣

They really need to get moving on your palliative care. I found it a long time ago that you are your best advocate and you may just want to find a different route to get to your care. It seems that sometimes doctors and others don't understand the seriousness of our condition and that it's not something to sit on. I remember many times when I first started out on this one telling people "hey look, this is a very rare and a very aggressive cancer. I don't want to fool around. I need this done." Perhaps you will need to do the same to get the care that you are entitled to. People just think that it's like any other breast cancer and it's not. You deserve all the help you can get both palliatively and emotionally. That's one of the reasons I joined the support group although I can see it's basically just the two of us LOL. I'd hate to think that I would have to take a break about the time you needed someone to talk to the most. Very hard to get people to understand.

Hey ya know, if your family visits are anywhere near Pennsylvania...

Just kidding. I wouldn't put that kind of pressure on you. I'm not sure sometimes if I'm encouraging or Debbie Downer. I try to keep some of this as light as possible; it helps to outweigh the seriousness of it. I am so grateful that you don't have any issues coming into it like I have. Although the good news is my oncologist is being very careful with me because of the damage that was done from before. She picked chemos that were much easier on the body and I am on a 2 weeks on 1 week off schedule the rest of it, the brain tumor. the thyroid tumor and the sternum tumor are what I consider just cleaning up the mess LOL. I truly believe that I've gone to the best place I could because I really don't think any other place would have actually taken the time to find out these things that I have. So then there's that LOL.

I am truly grateful that yours is easy on you. We both know what mtnbc is all about and I am grateful, truly grateful for you. Not that you have it obviously but that so far it has been very gentle with you.

Isn't it funny, when you look back on your life all the craziness from being hippie teenagers with exactly three televisions stations to where we are at today. There's a lot of things I don't like that's going on today and sometimes I wonder if it isn't better just to go and let him have at it. Like I said I'm doing this for my husband and for my daughter. Both of them are who I consider my best friends. Sometimes I just plain get tired but I'll keep walking it through. Same as you, this was given to us whether we wanted it or not and we both are strong enough to make it to our goals. I'm very proud of you. You are very strong and in that I find encouragement and strength. Thank you for being a friend. ♥️

Hi Claoh

So glad that you're looking forward to being with your family and close friends. They should make a great support team for you.

I found this article on the Verywell website that may enlighten you on various symptoms. Even though they're looking at it from an oncologist side, I think you will be able to glean some good information off of this so you know what you're looking for in case you need it:

symptoms of metastatic breast cancer:

I have always believed in staying informed myself. I thought this was a pretty good site to explain what to look for in the metastases. I hope it helps you.

Perhaps the psychological doctor's appointment might have to do with the depression as shown in this article. I know before I see my palliative care doctor I have to fill out a questionnaire that asked me how I'm feeling.

Please let me know how your palliative care doctor meeting went. I pray that he will take care of you through this entire thing. Towards the end you also might want to be looking at hospice care. It may relieve the strain on your husband for your care, but heck what do I know? This is my first time through it too.

Thank you for walking through this with me,

Pat