Choices

Thank you Claoh for your kind comments and for your advice. I really appreciate you! Don't let anybody tell you you are not awesome!

So Mashedpot, I haven't taken the time to properly welcome you to our little board of triple negatives. We are each speaking our journey for anybody that comes along later (or sooner) so that they can get their own ideas and make their own decisions from a real viewpoint. What you're going through is very important to both of us and we offer encouragement as you travel your own path. Your decisions are yours, and we will not try to sway you from them.

That being said, I was diagnosed after I found my lump in April. The doctors in my general area I didn't feel were competent enough to deal with such a rare and invasive cancer so I travel 3 hours to the Cleveland Clinic for my treatment. As a matter of fact I'm getting packed now to head out there for tomorrow's surgery. I have no idea where this will take me nor do I know whether or not they can get this thing under control but I do know that I have great friends right here that I can walk with. I started chemo this month as well as getting the gamma knife surgery tomorrow. My chemo runs as 6 sets., once a week for 2 weeks and one week off. I'm not sure what happens after that but I assume since I'm getting a port put in at the end of this month that my go-rounds aren't going to stop there. I have had two chemo treatments so next week I have off. I haven't lost any of my hair yet but they said it's usually around the 3rd or 4th treatment that you start losing your hair. At least it's summer LOL.

You will find Claoh to be a great friend and an encourager along the way. I hope that I can do the same for her when it comes to a little bit more than a small dose of aspirin. I'm very grateful to have found this site and I'm very grateful for Claoh being there. I was getting a little frustrated trying to find anyone else that was dealing with this when I came across her post and we basically have been going back and forth ever since.

Anyway, welcome to our little "club". I'm sorry that any of us have this but at least we all know that we have help and support. That includes you too mashedpot. We are here to support you and throw hugs your way as we travel this journey together.

Pat

Good morning Claoh!

Thank you so much for your thoughts and prayers! I had a serious panic attack coming out of the hotel and my poor husband didn't quite know what to do with me lol. I had to get to the car and away from everybody and just sit in the car. I wouldn't even let him have this morning coffee at the coffee bar until I was in that car. How's that for silly. But the car was a familiar thing. I needed something familiar to calm me down. After I was in the car I let him go have his coffee. It wasn't exactly nice of me but..

The all day (6:55a - 3:00p) went better than expected. Everything was done and I was out of there by 10:00 a.m. . And they were right when they said you're tired afterwards. I was extremely lethargic and really couldn't do much more then turn over and fall back asleep again. I slept the whole way back home, through the night and late into the next morning. I saw your text but as everything else I was simply incapable of answering it or doing anything else. When I finally got up it was a bit rough for me. I have low back issues and laying on that MRI bed and the hospital bed that they had me on for that amount of time took away all feeling in my right leg and I found I couldn't walk. It took my husband a few trips around the house with me hanging on to him and even then it was pretty iffy. I had to use my cane (something I rarely use) for the rest of the day. (Usually when I get to CC I will grab a wheelchair because I can't walk long distances). I hate to admit that because I always loved hiking and rock climbing and canoeing and horseback riding. I try not to think about it because it would frustrate me.

Anyway on a happier note the treatment was a success (so to speak) and I go back for an MRI in 2 months to see what the status is of both that metastases and to make sure there are no others. What the gamma knife does is kill the metastases but does not destroy it which makes sense because if it destroyed it you could get necrosis in your brain. So the point of the gamma knife is to simply stop the growth. Dang, I think I'm learning a lot more medical info then I have ever wanted or needed to hear LOL.

How are you? I can't say how much your prayers really helped. I thank you so much for those! That was probably the reason I got out at 10:00 instead of 3:00 and it went, as the doctor put it, excellent. I still say prayer is real and helps us along the way. So are you still on just aspirin? How did your palliative care doctor visit go? I am so glad you have one now. They're extremely important in our walks.

I guess I have "talked" enough. Thank you for being a friend Claoh. Mashedpot, we would love to hear from you too! Drop us a line whenever you feel you need to talk to two very understanding friends.

Pat

Good morning.Claoh

I think that sometimes having a light week with only a couple local doctor appointments really isn't good. Had an appointment with wound healing at the foot doctor (still dealing with previous chemo issues and had to have two more toenails removed) and getting myself measured for a lymphedema sleeve. Then what? I seem to sink into the realizations of what I'm dealing with and the only thing I can say is that it's a very tearful experience. Tried to break out of it but sometimes it's just gets hard. So I think that the crazy schedule, AKA 5 appointments on Monday at the Cleveland Clinic, is actually a lot better way to go because it doesn't give you time to think. Having a real hard time getting over the word "terminal". I'll get there, I'm just saying it's hard sometimes.

Since this was my week off I begin the chemo treatments again next Monday. The good news is this Friday I'm getting this cast off my left arm and hand that's been driving me crazy so I can actually have TWO hands now to do things like make my own coffee LOL. I told my husband that they had better take it off or I'm not leaving ha ha.

How are you doing sweetie? I know you missed my posts and I think of you everyday. I even wrote your appointment for the palliative care doctor you're going to in my calendar lol. I think what set me off before in the first paragraph was when rehab asked me what happened to me. I walk in with my cast on my left arm, my cane in my right hand (needed for balance because of the chemo-induced peripheral neuropathy), trying to fill out forms for them when my ET is so bad. Yeah I think that's what threw me for a loop LOL I missed you dearly and our conversations. Having you as a friend is very important to me and helps me get back to a place where I need to be. I go through these things trying to remember that it will get better (aka the gamma knife surgery that stopped the brain metastases as well as noticing the swelling going down a little as chemo starts to work with my system). I have to remember to look at the blessings in my life like my husband and daughter so I don't get overloaded. If anyone reads this and is in the same position I highly recommend that you focus on the things that bless you and bring you happiness. And as for you Claoh, I cannot tell you how much I am grateful for your prayers.

Pat

P.S. just found some interesting reading on the. FORCE boards that I follow:

https://messageboard.facingourrisk.org/t/rad51d/9914

Welcome to the site marlakeeth. This is where we triple negatives talk about our journey and try to encourage each other as we go along our paths. I'm sorry you were diagnosed with that. I'm going through chemo and I had gamma knife surgery a couple weeks ago for a metastases of the brain. I'm tired and like you get headaches and nausea after the chemo treatments. My treatment schedule is once a week for 2 weeks and one week off. It's getting harder but for the sake of my family I will continue. If you have any questions about this particular board for triple negatives please feel free to ask or just comment on how you're feeling or what's next on your schedule. We welcome you with open arms even though we wish you weren't here and were healed and whole. Each of us has their own journeys but we have chosen this choices board that we may tell others what we are going through so that they can make their own decisions. I hope that you will continue to input. It feels good to have people around you that know what you're going through and we encourage each other. Welcome.