My Husband, My Life, My Love, My Family, My Cancer
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Thanks for pocket duty yesterday for my scans. I posted yesterday about the long day on the Ibrance Thread. You can read there for that post. Now for the wait for the results. Appointment with MO Feb 17, but I am sure I will look into getting results way before then- haha that is me.
Hope everyone is doing ok today.
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Candy, glad the long day is over for you and hope you get your results soon.
I am doing well, walked to and from the hospital yesterday for my chemo. Today, went out for groceries walking in some snow. That was more of a workout but in a good way.
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It is so quiet here. I am guessing because people still have issues they have to deal with. My thoughts go out to those who need them. Everyone who is sick or recovering, may you get better soon. Hugs. I will keep checking on people.
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I was just resting from trip into office when I thought to check my email on phone. Found an email from dad from two days ago I must have missed, with a much longer string attached from my brother. Brother, who I haven't spoken to in 6 years (for a really dumb reason too), is undergoing tests for lymphoma at age 38. Dad advised him to contact me directly for the more substantial medical history and also tone down any email to mom so she doesn't get upset and catastrophize.
He doesn't have any signs like night sweats, weight loss or fatigue and I have no idea how he even ended up at an ENT in this situation. I'll email him tonight when my laptop replacement power cord arrives. Ironically when we were kids mom always freaked out about one of us having cancer (though clearly mellowed by the time sister came along some years later). Guess it'll bring us back together.
I know nothing about lymphoma but a quick scan online shows its pretty treatable?
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Sondra, I think it is like a lot of cancers as to how early it is caught. There are definitely treatment options for it. It can definitely be recovered from as I have had friends with it. The outcomes depend a lot on response to treatment, drug tolerance and luck I think. Same as it is for us. There are also different forms of lymphoma that I am aware of (hodgkins and Non-Hodgkins). Not sure about the difference between them.
I am sorry to hear about your brothers lymphoma. No matter how long it has been since you have spoken, he is still your brother and my thoughts are with you and your family over this news.
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Update: Throat scope yesterday confirmed that my left vocal cord is paralyzed and the right can't compensate for the gap. Today is had a procedure to help, it was the injection of a filler (like for plumper lips) into the vocal cord but they seemed to have trouble, so not sure if enough got injected to see much benefit. No talking for 24 hours, which is difficult since I had to get a mask fitting for 5 sessions (scheduled during my birthday week ☹️) to clean up brain radiation and now I wait for another brain MRI. I'm writing notes to the various techs but it is just so inconvenient. Still thinking this is temporary and it better be because choking and coughing on everything put me in a pretty crappy mood. Anyway, I'm sure tomorrow will be a better day. Wishing you all well.
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Mae, I am so sorry. This is currently such a clusterf@#$ right now. I hope this is temporary for you and you can get back to eating and talking. I don't blame you for being in a crappy mood. May you get through the testing quickly and if everything would just heal, you could do something really special for a belated birthday.
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Mae,
Hoping that procedure worked. Sounds frustrating not to talk for 24 hours, especially when you are dealing with medical stuff! You've been a trooper and it's time for you to get some better luck. Agree with Mara that you deserve an extra special birthday celebration, even if it is a bit delayed. Wishing you well.
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so sorry to hear about the needless and stressful damage you've been suffering Illimae, I hope that whatever those clowns do to repair the problems they have created is effective and permanently resolves the issues. My best wishes...be strong...this too shall pass!
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Mae, sorry to hear this continues. I am always hoping for better news for everyone.
Micmel, where are you? Still with that rotten sinus issue? Hope not.
Wave to all. I don't drop in quite as often as I used to but still pretty often and Mel's living room is my main stop.
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Definitely rough times Mae - hang in there and keep focus on getting to the other side of this. I cannot imagine how frustrating this has got to be. Keep us posted and keep that chin up!
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Hello Ladies~I am finally coming up For air. Dripping nose and all. I've been busy with some doctors appointments and some visiting with my aunt for a wonderful afternoon. She also has breast cancer. She's struggling with acceptance. We all know it well.
Runor~ thanks for noticing I wasn’t around, Life can get busy sometimes. But then again I guess that's good for me. I've taken up cross stitch and I'm loving it Such a. Soothing thing to do. Helpful mind calming. Neuropathy therapy I always think as I feel my fingers argue with which way. Lol but I'm doing it.
Mae~oh sweet Mae. I don't like reading that you're having such a hard time... it's bothering me and it's not even me. I wish I could snap my fingers and have you okay and not dealing with this shit. I mean we are not talking about a toe here. These are vital things one must have. I am thinking of you non stop. I don't want to come here and blubber all over you, because I know you'd hate that. But you are on my mind for sure. I get scared because nerves are tricky things. I've had a paralyzed hemi lung diaphragm since 2013 surgery. They are finicky things. Glad you're getting a procedure to help. I wish I had done that as well I regret not doing it when they recommended it to me. 24 of no talking. I think my DH and I would be screwed, it's how we talk all week long when he's at work all week. Texting it would be. You're a strong woman. Amazing is more like it. You'll be singing at the next concert in no time !!!! ❤️🌹
Hello Mara, Candy, Karen,Tanya, BooBoo, Minnie, Sondra, Simone,Frisky,Chicagoan, always good to see you here darling.
Hope You're all hanging in there as well!!!! Hugs to you sisters. Thanks for keeping the thread going when I'm gone guys. My crew!!! ❤️🌹0 -
Mae I just want to say a flurry of curse words right now. Argh! I am upset and frustrated for you and this situation and that it seems like you don’t have a break ahead. Damn this disease! I wonder if they could give you a break for your birthday or is that not a good idea?
How are you feeling energy-wise? Are you up for moving around and taking a little walk outside?
Sending love (and bad language)
Philly
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Well, I can talk now, no improvement. I must admit, I’m pretty pissed off that it wasn’t worth what I went through yesterday. The vocal cord injection consisted of a scope down my nostril and a needle through my throat and it took everything I could muster to allow it to happen.
I realize I could have worse problems but for a foodie who enjoys cooking, this is just cruel.
Anyway, DH and I are going to the 2nd annual Komen South Central MBC conference. I’ve got ladies from MDA’s MBC group there and updates from the San Antonio Breast Cancer Symposium. Not a fan of Komen myself but in this case I support them making an effort for MBC instead of pretending we don’t exist.
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Thinking of everyone, even though I am not online as much.
Mae, so very sorry reading all of your difficulties. I literally think of you every day and send my very best wishes.
Sondra. My youngest brother was diagnosed with Hodgkins lymphoma at age 29 in 1995. He did chemo and radiation and has been cancer free since, although the radiation damaged his heart and he is still dealing with that. In 2015 my cousin was diagnosed with the same in his early forties. He had chemo and no radiation and remains cancer free.
We have been working hard on consolidating and organizing our Christmas decorations. It's the first time in many years we have had everything in one place. It's been eye opening. I am hoping to finish that this week. DH is also planting more flowers for us to enjoy, along with new lettuce and herbs. I have no idea what I am doing in the garden, but we have enjoyed some of the produce. Our lemon tree has the teeniest lemons now and they are so adorable!!!! Have to read up on how many lemons to leave on each branch. I will struggle to eliminate any.
Thinking of all of you!!
Movingsoccermom
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Mae, thinking of you every day and hoping this is sorted for you soon. I feel sure you will win out in the end.
Love and best wishes to all xx
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Mae, I will be glad when your eating goes back to normal. Glad you can talk though, the notes all the time would have sucked.
Mel, glad to hear from you as well.
Sondra and everyone hope you have a good weekend.
I had a good week for a change. Left the house everyday this week, walked a lot outside. Walked to and from chemo which actually makes me feel better. Then it snowed around here so I got to walk in the snow which is even more of a workout. Proud of myself for not having to browbeat myself into going out. It is easy to walk on a treadmill, the outdoors is the better workout. Treated myself to a burger dinner and it was good as well. For a hermit, I got out quite a bit. I feel quite happy. Being active needs to happen everyday I think. I also cancelled my nurse visits. I have so many services in place that if something happens to me. This service was redundant and frankly I was tired of having to stay home all day as they all worked different shifts. The nurse yesterday called me after having waited around most of the day to say she could not come. Since I already called the service and said I wanted a discharge, I told her to forget it We could do the discharge over the phone or she could do it later. Was not interested in wasting another day for waiting. I am getting quite stubborn in what I will and won't do or put up with.
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Movingsoccermom - thanks for that reassurance! I emailed him and got a long email in response about what is up and it sounds like he has two doctors in disagreement (neck node that he noticed and kept growing over a few months), so they are going to core biopsy the swollen node. Im trying to decide if I tell him all about my situation or just high-level what the doctors may need to know (that it was in the nodes), because who wants to be going through cancer diagnostics and find out their sister is terminal? It would be nice to tell someone in the family the whole honest truth but maybe just not now.
Those lemons ARE adorable by the way... are you sure they aren't limes?
Mara - I am so glad to see you getting out in the fresh air, exercising, and that you are in a better headspace this weekend. Also, taking control over your time and needs can give that boost too!
Mae - That sounds, ah, not fun. Is this still considered temporary while nerves heal? Im not sure what else to say that hasn't been said already in here, but good for you for going to the Komen conference.
Not sure what we are up to this weekend - I am feeling very squirrely and need to get out. I was thinking of attempting the pool today for a very short session, there is a big storm coming in tomorrow and its looking pretty grey this morning so far, may as well! The To Do list is piling up as well and I should sort some things out, that will help too.
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Micmel, of COURSE I noticed you weren't around. We all did. It's always a little weird when the hostess gets up and leaves the room. But seems we're a capable bunch and kept right on while you took some time. You say you are cross stitching. I used to Xstitch and loved it. It has been years since I've done any because my eyes have gotten so bad I would have to call it cross eyed stitch. I can't see a damn thing anymore! It is the one needle art that Daughter was briefly interested in when she was young and I have the few pieces she made framed and hanging in my house. What do you do with your finished pieces?
Mae, sometimes I think there is a PTSD that can sneak up and bite us after we've endured, submitted to, been subject to, some unique cruelty of a test. I remember thinking, as I laid on the table with my boob exposed and some lady stuck three needles into my nipple, who in the hell can even sign up for these jobs? I mean, thank god people do, I guess, but ewww. I think it's good that you and Hub did something to divert your mind from the misery. That is a lot, a needle in the throat with a tube up your nose? Are you f---king kidding me? I was about to say I hope you got drunk but that's not likely to happen with your swallowing trouble. I am so sorry for you.
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Hello Saturday crew. It got cold here 45 but will go up to 70 . Crazy weather. Forced myself out of the bed and went to the gym with a friend. I did one class weights and aerobics. The next class was line dance 💃🏿. I made it through one song and got on the stationary bike. Maybe next time I'll just do line dance bc it was fun.
Mae what you went through yesterday was grueling. Hope you're eating good food soon. Enjoy the komen conference.
Mel welcome home.
Mara getting outside is the best exercise and tonic.
Waving hello to Minnie Moving soccer mom cute lemons 🍋 Runor love from philly Sondra and frisky candy Chicagoan booboo and anyone I forgot. Have a pleasant weekend.
Tanya
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Having a good Saturday so far. Just finished a really good lunch with a beef patty, spinach, a few tortilla chips and wheat bran for fiber. All of that was ground up in my little chopper. Added some left over cheese and a little queso and sour cream. Though it did not look even a little appetizing because of the spinach, I found it delicious and an inexpensive meal. Fills me up. Also freshened some blankets with dryer sheets as well for about 5 mins in the dryer, smelled wonderful. Did some financial plans which are always good to keep up on. Planning to walk the treadmill today as well. Just have to finish my chocolate bar.
What I do is nothing compared to what a lot of you ladies accomplish with what you are already dealing with, but I find these little accomplishments mentally encouraging and you are more interested than my family would be, so I tend to just tell you. I appreciate the support every day and do not know what I would do without you all.
Tanya, I remember line dancing when I was younger. It was a lot of fun. I was not good but I didn't care. It was just really, really fun. Glad you got to do that.
Runor, no doubt a lot of us would have PTSD from what we have gone through with this disease. I am surprised I don't have PTSD after what I went through last year with my mom, cutting my younger brother out of my life, selling and moving out of the condo to a small apartment (which I love), grief blah blah blah. This does not include any SE drama from the disease. Not looking for extra sympathy, just a general comment. My sympathies are with everyone here having a hard time while balancing volunteerism, family commitments, jobs or just life in general. Cancer is enough to deal with but then you have to add life to it as well. It is a lot for ALL of us, whether we have/had early, advanced or metastatic BC. We have all been through it and for us to be here is amazing and shows our strength.
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Relaxing Saturday for us. My DH is making a corned beef in the instapot. Many a thing is being made because of this purchase. I took a nap kinda. In and out I’d say. Not solid sleep Has coffee too late into the afternoon. Bathroom breaks! Weird weather past two days. But otherwise pretty quiet. Which I don’t mind. Hope everyone is well!!!
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Line dancing sounds fun Tanya! Just been out tonight and a couple of friends were dancing. My dancing days are over, with the hip that doesn't weightbear but I had to do a bit of sit in the chair and dance! A bit of fun.
Enjoy your corned beef Mel. Hope you are feeling better now.
My best wishes to all xx
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Mel, that sounds good for supper. My brother has been trying to get me to purchase an instapot. I will have to research it because my kitchen is so tiny, there is nowhere to keep it unless I put in more shelving units in the living room. I know you can just throw things in and leave them as well. I am going to research more and see if it would add to what I am already liking to eat. Glad that your purchase of the instapot is being used.
I am going to make a chicken patty, put onion and garlic powder on it with shredded cheese on top with a side of garlic bread. Don't want to eat it like a burger, using a knife and fork. Then I will walk another half hour. After that I will make some liquid soap out of my bar soap which is unused as bar soap and add my peppermint oil for scent to stretch out my soap. Works really well and satisfies my frugal side as well. I do the same with laundry soap. I just fill a pyrex measuring cup with the amount I wish, put the bar in and cook in microwave for 2 to 3 mins, leave it for another 15 mins. I pour the liquid soap into a dispenser. The laundry version of this is added to an existing laundry soap to stretch it out. Smells and cleans very well and means I don't need to purchase so much laundry liquid detergent. The bars of soap last quite a while as well.
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Hi All,
We have friends visiting from PA, so I haven’t been online much. They are staying for two weeks, so hoping I don’t go nuts. I never realized until lately what a quiet life we live. I love this couple so much, but any company for that long is, well, LONG. But they are very easy to host. They cook and clean up, so that’s nice. Anyway, it’ll be another week until departure, so I won’t be on much.
My new treatments (Abraxane) are going well. I haven’t lost anymore hair, so I am hoping I may get lucky and keep what I have left. It’s enough that I don’t have to wear a wig or cover, so I’m very grateful for that! I am tolerating it really well, and have few side effects. Very happy about that too.
Mae, thinking of you and praying for recovery soon.
Mel, hope that nasty cold goes away. They are no fun either.
Tanya, hope all is well. Can you believe we are going to be in the 80s next week?
Love to all.
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Mae~ thinking of you and hoping you’re improving daily. I am constantly sending you good thoughts every day,,!! You truly have a determined and wonderful spirit.
Mara~I like to stick things in a pot and walk away from them and have them cook. The juices in that thing are something to behold. Love how you walk everyday. Love your determination as well.
Tanya~ Hello friend. Hugs to you sweet woman.
BooBoo~ thanks for the good wishes. Cold is finally moving along. Runny nose is lingering.. annoying actually. But doing ok. Soon bloodwork and scanning for me. Blood work in February and scanning in March . It has been nine months since ,My last scan. Ibrance better keep on working. I’m entering my middle 40’s in months taking it. Been so long to scan. I’m a big chicken all over again. I don’t feel any different But I know that may not matter really. Even when we felt fine. We had cancer. But I don’t feel new pains or anything. So. I just move along.
Minnie~ I danced at my daughters reception, and that was the last time since I was able to dance like that It was like someone knew I needed to feel good for those hours. I was thankful!
Hello to everyone else. Lynnwood, Chicagoan, Simone ,Karen, dodgersgirl,frisky, Have a wonderful Sunday ,! Much love to all,
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Thanks Mel, just got back from more walking. Woke up this morning with a craving for a burger and knew that if it was delivered, it would be a lot of money due to fees tip etc. Decided that if I just had to have that burger for dinner, had to walk to go get it. Sidewalks are most snow covered so that was a workout and took me about an hour, but 2.5 miles total there and back home, I had my burger. Under 5 dollars instead of closer to 20. I am pushing myself hard because the walking has really improved my mental state. This makes 7 days in a row of walking, some inside, a lot outside which is new for me. I want quality of life while I can have it as I know it can be yanked away quickly.
Hope you are feeling better and that everyone is doing well too. Hugs and thoughts to those who are not. Mae, I hope your conference was informative for you and that your vocal cord gets better soon.
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Mel- Thinking of you and your scans. I think it was Jaycee on another thread that said the longer we go, the more anxiety provoking the scans can be. 40 something cycles on Ibrance is a good run. Praying you can say 50, 60, 100 cycles.
Mae- Always thinking of you. Hugs.
Mara- Wow, walk 2.5 miles in the snow for a burger. Boy, you REALLY wanted that burger. Hahaha. Hope it was big, juicy, and full of pickles and onions. Now I am hungry for a burger.
Quiet day here---laundry and gathering tax papers to turn in to tax preparer.
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Candy, the burger will be good. Just going to chop up spinach and melt cheese all over the spinach and reheat the burger. I am thinking of walking to the grocery store to look for liver. Need to burn off stress of a visit with DB and SIL. I have a trust account set up as I was only allowed to keep a certain amount of assets in bank with my disability. The disability gives me benefits which is why I need it. What I was irritated about is that I wanted to take some of MY money out to beef up my income each month over a year but had both DB and SIL shoot it down. Their reasons are sound but I felt not exactly bullied but sort of put into a corner. I hate having the trust because I feel like a child asking for an allowance. It has to be there or I lose part of my money every month. It is a no win situation. Even though I explained my position on why I feel I need it, they feel it makes no sense to take the money out. Ugh. I am going to just table the discussion for now. Can't afford to be in conflict with the only family left in my life. I know they mean well, it is just like being on my mommy's purse strings. They are lucky they have no idea how this feels. If I somehow live long enough for old age pension and I don't have to keep the trust, I will have something else set up in its place that I control. Only 17 years to go. Assuming I live that long. I think people have forgotten the Stage IV and the fact my brain was the first site of mets. Not a great combo.
Sorry to be such a debbie downer, it is just I was having a great day after being able to walk so far only to have it become depressing. So damn annoying.
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Micmel— glad you are back posting. Worry about you when you are missing.
Illimae—continuing to send you good vibes for continuing recovery. Can’t wait to read how you are eating garlic bread. I know you have stuff to deal with and know you are very strong. One day at a time.
Mara—. You go girl. I read all the accomplishments you do and hope to follow in those steps.
BooBoo1– Glad your new treatment is going well. Enjoy the time with your friends and then rest afterwards!!
Minnie31– chair dancing sounds very festive. Do you sing with the music, too!!
I have been MIA. Having a hard time dealing with SE (bid D) from rads to hips. Been in the hospital since Friday.
Waving to everyone and hoping this week will be good to us all.
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