My Husband, My Life, My Love, My Family, My Cancer
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Micmel, glad you are ok and things went well other than you being awake. That would have been hard for me too. But glad it’s done now and you can heal! Hugs
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Micmel, you really shouldn't have done that, but I know I would too
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Tanya. I'm so sorry for the "crime scene" in your bone marrow. You have such a good attitude, I think I would be stomping mad. So the plan is that you won't have chemo until the criminal can be seen?
Micmel you showed us a new side of you. You must be freaky strong to have done that. I do know that living alone makes me do a few things I really shouldn't do. That was a funny story, though, with your good side and stubborn side arguing. Ha
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Hello ladies~ I have slept most of the morning. Surgery exhaustion finally hit me.
Tanya~ thinking of you sweet woman. Cancer is crap! Crap crap crap!!!
Muddling ~ I agree I should NOT have done that. But I know I am stubborn for sure. It does look really nice though.. I wanted to be able to feel like I can function. I'm sure we all have our moments!
Gracie~Thank you darling. How are you feeling and how is Abraxane treating you. I think of you often.
Grannx~ lol I honestly felt that I was having a conversation with three people about this nightstand. I realize now, I could have maybe waited for my son. But I don't like not being able to do things I used to do! LoL at freaky strong! Made me laugh. I dont think I can accept my new normal all the time.
Minnie~you're right my friend. But I did it! You would definitely have done the same thing. I think it's how we are wired..
lynne(50's) thinking of you as well
Holmes ~Hope all is well in your world.... haven’t seen you around
Lynne (Man)~I saw a Kia today, I think it was pretending to be a Mini Cooper. Shame shame on Kia. Not even close! 😁. It was red and was trying really hard to look like a mini. Just couldn't pull it off! I tried to get a picture of it but there was someone sitting in it, and they were looking at me funny. Lol. So I hurried along...
Much love ~M~
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Micmel-I have 13 stairs to my second floor (where my bedroom is), I would have left it for my husband (or whoever showed up before him). Especially, the day after surgery! YIKES! Glad you are ok! I know about wanting to do things you have always done. My mother always wants to drive me everywhere! I told her I can drive myself to my appointments, just not the chemo appointments. She wanted to drive me the 2 1/2 mile ride to the pain management building this morning. She thought I was getting a shot. I said that no, this is just the consult. Well, my shots will not be happening until the day after Labor Day, that was the earliest with any of the drs they had. She gave me a prescription for predisone. 3 a day for 5 days (no tapering down), to try to help with the pain. Of course the pain in my left leg is almost gone, and is now starting in my right leg. I've got a very busy month and will just have to suck it up I guess. She did say to call if it gets really bad again. I thought why, if I can't get in until the beginning of Sept. There is no magic pill. I went through them all while I was there for a year, trying to kill the chronic pain. I did ask on the way out if I needed someone to drive me after the shots, and they said no. I only drive about once or twice a week, let me do it MOM (she's 80 1/2 by the way!). Of course some of the stuff I would like others to help me with, doesn't happen. I've mentioned multiple times, that my floors and one rug are filthy, and of course nothing happens. I can't tell you when the floors were last washed (even with the swiffer) and the rug on the stairs has be vacuumed (I'm ready to tear it out!). Both kill my back. I do sweep the floors, empty and fill the dishwasher, do the laundry, wash the toilets and sinks (I can't do the tub and the shower anymore). I can even mow the lawn (when I get sick of looking at it so long). But could you please just do what I ask, that I can not do??? Grrrrr! Too funny about the Kia! I always think the Fiat looks like a Mini from a distance. We wave at other Minis, and I have to ask my husband if it is a Mini or not, when it's a Fiat. LOL
Off to Boston tomorrow afternoon. Hopefully, there is another chemo, or other treatment, that isn't once a week for 3 weeks, then one week off, and doesn't give you a lot of side effects.
Have a good evening everyone!
Lynne
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lynne(Man)~ the better get on the ball and get you settled. You need a gentler treatment after everything you have been through. All those taxol Infusions... i used to use 5% lidocaine patches on my back, and the ointment for my joints. Maybe you should try the patches. They really do help. Last for about 4 hours or more. Since I have been diagnosed, I always have them on tap! Get them. They help!!
hope your other leg feels better. Soon! Much love ~M~. I wasn’t sure what I was looking at, I knew it was an imposter. (Minis look better I agree)
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Lynne, your last sentence made think of the Huey Lewis song. "I want a new drug, one that does what it should, one that don't make me feel too bad, one that don't make me feel too good." Although we would take feeling too good, right? ?? Seriously, I hope they come up with a great combo that will be very tolerable and effective for you.
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Micmel!! (hands on hips, giving you a stern stare, and you are appropriately repentant) DO NOT DO STUPID STUFF!
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Dear Ladies! I keep trying to catch up, but apparently it’s not going to work for me. By the time i’ve read all the posts, I can’t see clearly enough to write anything. I have so much I want to tell you! But if I try to just write it all out, it would be pages and pages. So, let’s make a deal: ask me whatever you want to know, and I will try to answer as best I can. A bit of warning, though. To go along with the failing eyesight, I also have some kind of nerve damage where my fingers twitch and jerk, So sometimes what I’m writing doesn’t make a whole lot of sense. And I can’t see clearly enough to know that.
I will say this, though, Hospice seems to be a good decision at this point in time. And it’s helpful to know I’m not locked into it; that I could drop out at any time without penalty.
Let me see if I have a good picture to share with y’all.
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Magda~ Hello beautiful~ I am so happy to hear from you. Thank you for taking the time to include us in your thoughts. We think of you every day. I honestly just want you to know we love you and are in your pocket cheering you along. Hospice can be very helpful, and your strength and ability to bounce back will come through after hospice gets your issues under control. We just wanted you to know that you are loved and missed here and that your bar stool will always have your name on it. Waiting. If you're having issues with writing. No one can blame you for not wanting to stress your eyes or those nerves out trying to type when you don't really want to. Just a little hi will do. It will be goo to know our sister Magda is watching and knows we adore her! I heard your visit went well with one of the BCO ladies. And that's fabulous!!!!! She was mentioning how lovely your home was and how happy it makes you. That is just plain awesome. Friendships are so Special. I am giving you a great big hug. Miss you! Love the picture. Hello lovely!! Much love ~M~
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Magda. So glad to see you. You're at home on hospice but still receiving chemotherapy? If so which one? Thank you for writing us, we miss you.
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Magda, happy to see you post and that you are satisfied with hospice.0
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Nice to see you Magda 😀
Good morning everyone. So far, day two of retirement is going to be a lot like day one...receiving texts from former coworkers about how to do things, cleaning up around the house, running errands and cooking myself dinner. Last night was mini turkey meatloaf with mashed cauliflower and sautéed squash and zucchini (pic below), tonight will be penne pasta with spinach and chicken and a Cesar salad.
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Micmel-I've been on Lidocaine 5% patches for 13 years. Since I was having back pain (later found out it was cancer that came back in my spine). I use 2 (one on each sciatica side) daily. They stay on for 12hrs. 12 on, 12 off.
Muddling-LOL! I love Huey! Went to see him in Worcester, MA, when he was real popular! Yes, I do need a knew drug, that won't make me sick! LOL
Magda-So good to see your beautiful smile! I am glad you feel you did the right thing going into hospice. I did not realize that you could stop and start it as you feel necessary. Good to know! I have a few twitchy fingers myself, as well as nueropathy. I'm always correcting as I type. Please chime in on here once in awhile, let us know how you are doing. Big Hugs!
Hubby should be home any minute for my ride to Boston. I'll let you guys know how I make out!
Hugs!
Lynne
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totally thinking of you Lynne(Man). Please let us know what the second opinion looks like. Much love and support 🌹~M~
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Mae~ yummy. How I wish you were my neighbor. I have a feeling we would get along very well all of us in fact! You have made me hungry.
The bridal shower ladies is ok one week Saturday! I never imagined everyone except two people would not be able to make it. I am having 30 people for this bridal shower in my home. My DD is on her way to take inventory, and make a list of what we still need. Which shouldn't be too much. I remember they all looked at me like I was crazy. Buying everything so early. I remember hearing “Mom you have 8 months before all of this What are you doing ?" I said that before we knew it, it would be time and we would have nothing done. But instead, now, most of it is complete. Just a lot of me work now. Puttin together the center pieces together and last minute helium balloons!
I'm already sweating the entire thing. I'm just so worried I won't be up to it. Lady ibrance #19 finished today. My week off starts tomorrow. Usually, I had great weeks but lately not so much. Sometimes I am convinced the chemo is accumulated throughout your body and brings out some to kick your ass when you have a week off. As if to say. “I'm still here". I had my test results come back from my surgeries , and all the lumps removed were thankfully benign. Fat necrosis and adhesions of extra scar tissue. Phew 😅 glad to get that! Much love to all ~M~
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Looking for feedback. I really like my onc, she is personable, friendly, well informed, knowledgeable about new treatments and always asks about our life outside of cancer. What she doesn’t do is say much in regards of how she thinks I am doing , what she thinks will happen next, or give me any feedback on how she thinks I am doing compared to any other of her metastatic patients. I’m on my first line treatment, cycle 39 of Ibrance/Letrazole and I think that’s good. She never says wow , cycle 39 or anything like that. Today my husband remarked to her that he thinks I am doing so well for as long as I’ve been dealing with this and she had no response. This bothers me. My husband says it shouldn’t bother me, that I know how I feel and that should be good enough for me. She asked me if we have any grandchildren and I told her that we need an engagement and wedding first and that I hoped to see these things happen before I die. Again, no response other then to say she bets it’s fun being a grandparent. Am I being too sensitive? I am definitely not the type to “ fish” for reassurance but it would be nice to hear a tiny bit of it. Don’t get me wrong she is not negative at all, just takes things visit by visit and doesn’t bring up what she thinks may or may not happen in the future. My friend said that perhaps she takes this approach with all of her patients, especially because she is an oncologist. Am I being too sensitive? I’ve been in a mood lately so maybe it’s me. Appreciate any feedback, give it to me straight, I can take it! Lol!!0
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So saw Dr today, numbers are still up but he thinks it is because of my Gem because bilirubin and stuff is OK, so that relaxed me some and I will relax about upcoming trip.... 7 weeks,
On a fun note I have thrush..... 😕
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lynnwood, I tend to agree with your DH and to not place much importance on her response. Perhaps she is actively avoiding such conversations because cancer and treatment is so individualized or because we dissect every word (or lack there of). I noticed quickly that my MO doesn’t want to answer those type of questions either, so instead of her telling me how good I’m doing, I tell her how good I feel and leave it at that.
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Thanks Ilimae! We did have a conversation about how much better I feel since starting Gabapentin. I went to a pain management doctor because I had different pain from different things and needed some guidance. Gabapentin has helped immensely. My onc was happy to hear how much better I feel. I DO tend to dissect everything said and not said.0
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Magda, nice photo. Btw, this thread moves fast and I can't always keep up with it, either. Popping in to let us know how things are going for you is all that is needed! Many hugs to you.
Micmel, my advice is to cut out all the unnecessary activities you can this week before the shower. Don't worry much about the house, the meals, the laundry or sorting out anyone else's troubles. Take it easy! I too, have a habit of jumping in and doing to much all the time. My foot is in an air boot now, so my involvement in manynthings is miniized. I'm trying to learn from it. I've asked dh for more help around the house; thankfully he's very willing to do that. I prioritize and take my time. The yardwork will have to wait. More take out this week and less cooking. I hopped on a motorized cart at the store and did the grocery shopping.
I went to a birthday party for a two year old last Saturday. Somehow a large knife was left lying out and a tiny child was reaching for it. Several of us sitting far away saw it happening and my sister sprinted to the table and grabbed the knife in the nick of time. I had to resist the urge I had to go for it myself and let her handle it, since my foot is out of commission. Sometimes the best thing we can do is *less*. That's my prescription for you this week!
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Lynnwood~my oncologist is Japanese, he speaks broken English, he nods his head and listens but never offers any thing in type of success stories or the wow factor. What I can tell you is that if you weren't doing well, YOU would know, THEY would not Be so blasé... they would be changing your medicine or sending you for tests!! My Palliative Care Doctor, does play cheerleader and she should. The last time I saw her she told me about two women in the same practice as I was in, take ibrance also. One is going on 45 months. And the other 43 months. And a third one was 30. some Docs are just numbers people and to the point. I know for a fact my palliative care doc tells me how good i am doing and I am starting number 20 after my week off. You're kicking a** is what your doing my friend. Keep going and going and going. Much love ~M~
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Keetmom~ thrush oh no! Sorry. I've had it. It can be a bear for sure. Very pleased your numbers are ok! It's always something. I always say! Good to hear from you! ~M~. Hugs
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Keetmom, I've had thrush several times in my adult life, which is not too common, and it is MISERABLE! But mine is quickly treated with some simple meds that used to be banana flavoured and were great and now have that sickly cough medicine flavour that they call cherry. Yeah, cherry that someone puked up. Gross. I hope you get a handle on it quickly!
Lynwood, I do not think you're being overly sensitive. You are a person, not a process. A doctor is treating the whole you, not matter how they might like to piece us up for their convenience. I think it is the doctors job and responsibility to ask how you are doing, because in your response, or non-response, or denial, there are clues that a good medical professional puts to use to determine how you are doing. And that is what they should want to know, first and foremost, HOW ARE YOU DOING? They are all supposed to pledge to DO NO HARM, but unless they open the possibility of dialogue and exchange, how can they ever determine when you are indeed suffering harm? Or are doing alright? Or need a little support? Or a break? Or some counselling?
My regular doc, who was new to me at the start of this cancer bullshit never once asked me how I was doing. Not once. He was not pre-emptive at all with his attitude or conduct. After a year it felt like medical neglect and I left him. My new doc, on the FIRST meeting, asked how I was feeling, how was I doing on Tamoxifen, was I getting back into life? I LOVE HIM! While your doc might be reluctant to give you feedback out of the blue, she should at least lay the groundwork for you to freely discuss things that are on your mind. A simple, tell me how you're doing? is enough. I do not think medical care is complete or adequate unless there is CARE, not just procedures, involved.
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So, got home an hour ago from Boston, from my 5pm appointment. We had the top down on this 90 degree day,which was fine when we were moving on the highway, when the traffic got bumper to bumper though, way to hot, and put the top up. He put it down as we were leaving, and we got about an hour from home, and saw the lightning, black clouds, and then it started downpouring. He waited until the traffic slowed down to 20 mph (the only time we can put the top up while driving), and finally put it up. We were both soaked. We hit the NH border, a half hour later, and it's sunny. We did see a rainbow when the rain stopped though. Ok, now back to the second opinion. The breast oncologist from Dana-Farber, gave me 3 different chemos that my local oncologist gave me. She thought it was too soon for Gemzar, and the other chemo my local oncologist gave me, they don't even use for breast cancer anymore down there. The first one she suggested was navolbine (I'm sure I'm spelling them wrong, I was just writing them all down as she spoke, haven't looked them up yet!). Only downside, is it's once a week, so all my weeks will be spent there. Second one is CMF, a mixture of 3 drugs, which is once a week for 3 weeks, so I am leaning towards that. There is also a pill Abamcyclile. Of course my local oncologist is only in the office on Fridays. I guess I will have to try to get a hold of her, in the morning.
Tomorrow, we are heading out by 10am (or so my husband says), for a 6+ hour car ride to visit our youngest, who moved out 2 months ago, to Rochester NY. His girlfriend is finishing her last semester in college, and is also from there. They are moving into a new apartment this weekend. No furniture moving (it came furnished, and includes everything but cable), just their clothes and stuff. We will be staying at her parent's lake house on one of the finger lakes (about 40 minutes from their apartment). I wouldn't mind so much, but the sciatica has moved to my right leg now. It's not as bad (yet) as the left leg was (that's a lot better), but I don't want this ride to make it that way either. I told my husband that I was putting the seat down, and turning on the heated seat for the ride. They scheduled me for steroid injections the day after Labor DAy (oh yeah, a month away). She did give me a prescription of predisone for 3 a day for 5 days. We'll see if that helps. I'm starting it tomorrow. Hopefully, I can sleep on them.
Keetmom-I would get thrush every 3 weeks from the steroids I had to take before and after my last chemo. No fun! I rinsed with bacon soda a lot, and took the prescription liquid (the bacon soda worked better for me). I hope it goes away soon!
Lynnwood-I've been seeing my local oncologist for 13 years. I still find it hard to talk to her. She's probably 10-15 years younger than me. If I don't ask her questions, she doesn't offer anything. I think you are looking more into it than you should. She would tell you if there is something wrong.
Micmel-Good luck with the shower!
Have a great weekend everyone!
Lynne
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Micmel, shower... EEEEEEEEEEEEEE !!!!
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Divine~ thank you for saying that. Because you know what you're entirely correct. I already feel it and it's after my operation even. They called me a beast. Said you're strong. No one usually ever does local anesthesia. I said I think more and More do it than you think. I hate being put under. I get clouded head, lasts about a week. I dont have that this time and I am pleased about that. I agree though. Staying still lately has been hard for me. I know how much work DH has been putting into my room for me. I love it.
He painted it and got me a beautiful night stand. The chair that we have in here now is a rocking chair and you just can't sit on it too too long. So I got my DH a surprise thank you.. really cool chair with an ottoman, that way we can be in here together. It's coming soon. I will NOT be carrying that up for sure. I'm so excited for him to see it. That way he can be comfortable also like he has always made me. I am such a lucky lady!
I realized we haven't seen Holmes, or Elle , or Blueshine in good while now. Just hoping all is ok. Gracie as well thinking of you sweetheart... always thinking of Lynne (50's) as she takes her break. Lynne (Man) How was your second opinion? Thinking of you as well!
Chicagoan, also hope all is well.
Waving hello to Tanya .... Daniel and Leslie....GP....Stilliving...Runor~ I know I am stubborn. It's a part I believe will never change. I still have to laugh at Grannax saying I must be freaky strong. That really made me smile. I have always been strong. And athletic. Before cancer gutted me. I guess that's another reason it so hard to accept this new normal they all can't wait to announce to you. Blah! Blah! Hello dear Minnie hope you're doing well. Hello muddling. Hope you're doing good also.. Hi to Pots.... one of our newest bar stools pulled up. Welcome again. Chelle ❤️ Nan💙
Keetmom~ Hello strong woman. You're on my Mind
Iwrite~ congrats on your new grandbaby! Would love to hear the details! 🍾🍾🍾🌹
I have heard several mentions that this thread moves fast. I guess I don't realize that it moves somewhat fast... but the medical ones ibrance and bone mets move like lightning. I thought this one was actually a lot slower. Am I wrong. Lol or just way over weddinged.
Lynnwood~ breathe deep darling. Mae~ how was dinner? sounded delicious to me. 😁
Waving hello to Divine.....I hope your foot is healing well. Magda again... glad to see you!! Always! I'm going to sleep. I hope I haven't forgotten anyone. Good night ladies ! ~M~
I got the results back from lump removal. They were all benign, I am so very thankful. The shower is August 11.. I’m scared 😱. Help!
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Lynne (Man) bacon soda, eh?
Keetmom, when I got thrush with first rounds of chemo, my cousin had me do a mouth rinse with food grade hydrogen peroxide. Worked like a charm, probably not as tasty as Lynne’s bacon soda though.
I have been busier than a one-armed wallpaper hanger since I’ve been home! Isn’t hospice supposed to be restful? So apparently I’m not allowed to be left alone lest there be an “event”. If you’ve heard me talk about my cousin/caregiver/housemate, you may recall that she has something of a shopping addiction, that is to say, she goes shopping every day. It’s always been something of a mystery to me, as I don’t like to shop, like at all. If I have to shop, I prefer to do it online. So I’ve been haunting amazon, Wayfair, overstock, chewy, etc. decorating the new house has been something of a challenge, as I’ve had to tussle with my dislike of shopping, while enjoying finding nice things that I really like - something I’ve never been able to do, always having had to compromise with DH, whose tastes were very different from mine. I’ve consulted with DC, because she will live here when I’m gone, and because we don’t differ too much in taste- she actually does pretty well buying clothes for me. Would you ladies be interested in seeing some of our rooms, or would that be too boring? Let me know. I still haven’t seen all she’s done, since I’m pretty much confined to the bed.
I’ll try to do better about posting; I still read everything, but my retention is pretty much non-existent. So I send my love to you all, and whatever is going on in your lives - by the way, did someone ask if I were still doing chemo? The answer is a resounding no! No more chemo for this girl! As I see it, it’s the chemothat caused the domino effect of the last 5 months: Gemzar -> vasculitis -> DVT -> pulmonary embolism. I see a clear line of cause and effect, even if it can’t be verified. Things continued to go downhill when I was switched to abraxane, which tells me that although it might not have been doing any further damage, it is quite possible that it was, and even that it was doing more damage than can be known. I just decided it was time to stop playing Russian roulette with my health, however much time I have left.
Ok I’m done (and done in!) for the night! Go sleepy bye as I tell my fur babies. That’s what I’m gonna do.
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Hi Magda, good to see you. Hope you are comfortable. Sending lots of love x
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Magda~ Hi sweetheart.... please share with us your rooms. I am also re decorating and love ideas. Grannax just shared her new room with us a few weeks ago and it was magnificent. I shared one of mine so far. If you feel like sharing anything with us. This is why we are here. I don’t care if it’s the color of your socks. Having you here knowing you’re ok is all we need, and if you don’t feel like a long thing just say hello! We love you darling.
Waving hello to sweet Minnie. 🌷🌷🌷
Much love ~M~
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