Choices

I did read your post and I’m interested to see what happens with everyone. We all have to stick together and tell ourstories.

Claoh welcome back! I hope your visit was wonderful!

Marlakeeth, I totally get what you're saying. It seems chemo wipes us out for a few days afterwards not to mention the horrible nausea the night of the chemo and into the following days. Recovery seems to be getting slower for me. Is it for you? My nutritionist told me that I had to have 110 g's of protein everyday to help offset the chemo effects. I see her again next Tuesday during my treatment so we'll see how well I did. I got busted for not eating and they put me down as having mild malnutrition. My daughter came up and straightened that out and has me on lots of fruits and vegetables and for protein I drink the premier protein shakes. They're about the only ones that don't taste like crap. I get the latte flavor and add it to my coffee so that I can still have my coffee and still get my daily protein values I need LOL. Got to have my coffee. :-) Did a nutritionist talk to you about your needs concerning chemo?

Claoh it is so good to see you back! As you can see it was pretty quiet on the boards although I am grateful that we have another friend now to walk this journey with us in Marlakeeth. I finally got my port in Monday so no more through the arm chemo. I have a huge black bruise around the port area that is very sore LOL. It looks like somebody punched me haha. I also have a cut at the base of my neck that has been taped and it's also sore. It's nothing that you notice until you accidentally touch it. The one at the base of my neck was used to put the port in down below. Tuesday was my first treatment with the port and I appreciate the fact that every time I moved my arms I didn't set off the alarm on the pump. :-) Like I said next go around is this next Tuesday so I, like Marlakeeth will probably be off the board while I try to recover.

Marlakeeth do you have any plans concerning your TNBC? I wasn't sure what stage you were at when it was discovered for you, but I have been told both mastectomy and no mastectomy and haven't really found any good answers yet concerning either one. Thankfully that's down the road for me because for right now they're only trying to get it slowed down. They found tumor embolisms in my lymphatic system so I'm really not sure where all this is going. I was stage IIIB when I was diagnosed but that was before they found the little embolism in my brain so I'm not sure what stage I'm at right now. The one they found in my brain was tiny, no bigger than a sesame seed. The gamma knife surgery was really easy and I was out long before I was supposed to be with no more ill effects then sleeping for two and a half days LOL. As Claoh and I have discussed, palliative care is essential for your journey. I am grateful that for now Claoh only requires aspirin. TNBC can get nasty and it always helps to have someone backing you up such as those in the palliative care.

Okay y'all, I think I have yammered on long enough. Waiting to hear from both of you. Claoh, I missed you dearly and am grateful that everything worked out so well for you when you visited your family. Marlakeeth, I appreciate your openness and look forward to your next post.

Pat

I am fortunate that my cancer has not metastasized anywhere! Just localized in my right breast. Feeling yucky yesterday fourth day after chemo was throwing up and nauseated. Most of the day today seems better. I’m at least dressed and have some coffee just a little bit Zonie if you.know what I mean.

Ha ha, I'm the kid in the group. :-)

I am 66 years old and live in Pennsylvania. I'm close enough to Cleveland to be able to go to the Cleveland Clinic which I am grateful for. They have provided me with oncologists, nurses, nutritionists, palliative care, mental health professionals (mostly using for caretaker overloads) as well as help for places to stay when I have two days back to back up there. I'm grateful for all of them and glad that they understand how much I hated chemo going into it. In fact I have been messaging my doctor's office today and told them about my exhaustion so they gave me the option to lighten the dose this time to see if that helped. They also recommended exercise for the exhaustion but really all I want to do for that is to swim (which I love). Problem is my left hand is in a cast and will be that way for another 3 or 4 weeks. I've considered dragging a chair down to the creek behind our house and sitting in the middle of it with a fishing pole and my feet in the water getting a nice massage. I figured the exercise is getting to the creek LOL. Another interesting thing that happened to me is due to this particular chemo I have developed burning tongue. The front half of my tongue feels like it's burning. There are no sores in my mouth like some people get but it is tender. The head nurse in the oncology department recommended I get L-Lysine 500 mg or if I can't find those to get 1000 milligram tabs and cut them in half, 500 mg twice a day between meals. I never had burning tongue with my last chemo so this is all new to me. I am on the second go round of chemo which consists of 4 doses. I am at number 5 which is 4 in the first go round and 1 in the next go round. I suppose I should feel grateful that the chemo hasn't really affected me until the last one. I'm still surprised I still have my hair. Like I said, they're taking it easy on me because of everything I went through in the last chemo and the damage that was done to me which was great. So I've got a couple more chemos and then we do a pet scan to see where I'm at. I keep thinking about the fact that this is treatable but not curable. I wonder how long I will be on this journey? Perhaps during this time they will come out with a clinical trial that bespeaks a cure. Wouldn't that be great for all of us? :-)

I am so glad to see both of you on the boards. Your experiences really do help me. I am grateful that neither one of you are going through what I am. It is refreshing for me to see that.

Marla, I'm sorry you had trouble with your port. I think that happens more often than they care to admit. When is your next chemo? You will have to let me know how it worked out with your port. I understand the headaches. I usually take a couple Tylenol to calm mine down. That and as you said a lot of sleep LOL. We'll have to see how I feel the day after tomorrow with my chemo. I can't let myself wear down because it's too easy to get sick when that happens. The doctors are keeping an eye on my blood work just to make sure nothing is there. Have you found palliative care yet? I can't recommend them enough for what you were going through. They can help you with headaches as well as your breast pains. They keep an eye on you and make sure that your quality of life is as good as it can be at this time.

Claoh you are the best for always putting in a good word and you're encouragement. I know you think that this kid (me) is the encourager but I really think that you are much more. I didn't know that about the sugar. That's interesting that they know that. Did they tell you anything else about it? You got my curiosity up LOL. Of course I love my sugar so I'm not really sure what I'm going to do there haha but there's nothing like a bowl of strawberries and blueberries with cream and sugar on it. I'd really have to think about that one before I gave up my sweet tooth. :-)

Claoh that is so sweet that your son is doing that for you! I just love that!! Thank you so much for sharing! It definitely put a smile on my face.

I think I will ask the nurse tomorrow what she knows about sugar also. Guess that turns us into our own detectives trying to figure this one out LOL. It's not quite June's journey, which I am familiar with, but kind of sorta our own little investigation. :-)

It's getting late and yes I'm still up. Not looking forward to chemo tomorrow but we'll see what happens. Tried to get as much protein in me as I could to see if that helps to offset the chemo. I will admit it is hard for me to get 110 g's but I downed about three bottles which gives me 90 g's. I'm pretty sure my meals made up the rest. Thank goodness this drink doesn't taste like crap.

So obviously I won't be on the site Tuesday after my chemo. I already know that there will be nausea with that and it will take me about 24 hours to recover from just that. I'm really hoping they do go with the light version of it just to see how my body will react. I really wanted some hard-boiled eggs for on the way out tomorrow but we ran out of time. The extra protein in the eggs will get me started for the day and help keep my stomach settled going into it. I know it only takes about 15 minutes to make them but it seems that and everything else had to be done. Our helper, Sarah, from the Area Agency on Aging is on vacation this week celebrating her birthday. She will be back Thursday and I can't wait until she can come over. I'm hoping that I will be able to see her Friday. Of course after this chemo I have 10 days off before the next go round. My husband and I have talked about possibly getting a cabin just to get away from everything for a while and try to have something a little more normal in our lives. Of course up here at the house I'm not really sure what's normal haha. We have the cats to take care of, both the indoor and the outdoor (feral) ones as well as an Peaky and Sweep. Those are two female deer that hang out behind their house in the field and bring their babies up so we can see them. Peaky is the mother of Sweep who is now 2 years old. This was Sweeps first year of having babies and unfortunately she lost them. I expect to see her with babies next year and a little better idea of how to take care of them. Peaky has taken on grandmothering and will bring out another couple females with about four or five babies to let them run around the field like it was the Indy 500 LOL. Then of course we got Chucky our groundhog and Jeffrey our blue jay who seems to have gotten mighty obnoxious since he was a baby a couple years ago. :-) Anyway this can keep our attention when we're home and our minds off of what's going on with me. It's nice to be able to look outside instead of inside yourself. Seems like all that does is drag a person down. As you can probably tell, I am surrounded by the forest and find it refreshing when I can get away and just enjoy nature, with its clean, emerald green woods and clear streams. It brings a peace to my soul that I can find in no other place.

Just in case anybody has cats, make sure you have someone else cleaning the kitty litter. The chemo makes you compromised and can make you sick if you try to do that yourself. It was something I learned on my last chemo. My husband takes care of it for me.

Anyway I will probably chat with you Wednesday or Thursday at the latest. Let's keep the boards going!

Y'all be blessed!!

Morning Claoh and Marlakeeth!

I feel like I have a bad fuel filter LOL. I got up every single day with intentions to write on his board, and zzzzzz. Wake up again, really need to write and zzzzzz. Okay, seriously, I need to get on this board zzzzzz. This time I'm getting smarter about it and writing you as soon as I wake up. :)

I had the standard nausea for a couple days after chemo and for some weird reason I had a bout last night. They say that fatigue gets worse the further you get into chemo and I believe it. Last week after my session I was so fatigued I was downright lethargic and couldn't move other than to turn over and fall back asleep. I told my oncologist about it and she lightened up one of the chemos by 20%. Seems to help because now I am just tired and not beyond exhausted. Actually I didn't know you could do that but I thought I'd ask her anyways. Hey the worst that can happen is she would say no lol. I am through my 2 chemos and don't have to go back until the 21st for the next go round. (Whew).

Claoh, I'm a little bit concerned about you. Make sure that when you see your palliative care doctor you basically tell her what you said in your above comment. She's there to help both for something besides your aspirin as well as something to help with the pain in your breast. Has your arm started to swell? Mine did when it metastasized to my lymph nodes. I had to get measured for lymphedema sleeves so that I didn't end up with DVT. I didn't want any ugly ones so I went online to Amazon and the nurse at Cleveland Clinic helped me figure out what size I needed so now I have two really cool sleeves, one to wash one while I wear the other. They are expensive but it protects me from blood clots.

Marlakeeth are you okay?

Pat