My Husband, My Life, My Love, My Family, My Cancer
Comments
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Parrynd1, I had to cross a huge mental barriere to accept morphine due to pain from skin mets. Just today I have increased the dose so that I´m taking morphine three times a day together with another pain killer (nerve pain). The latter makes my dizzy for a couple of hours, that´s it. Since my pain has come somewhat under control I´ve realized that it was also a constant mental reminder of my disease. The pain does not go away until our skin mets have been knocked down, so I can only recommend that you join me in the druggie club :-)
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Mae, Alan Parsons Project....WOW!!! So exciting!! I’m anxious to see more pictures and hear about this amazing adventure!!
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Tanya, OUCH!!! That looks very sore!! I think it may take a while to heal. I’m glad that you weren’t very seriously hurt but that looks pretty bad to me. Thank goodness for the kind people who help us when we’re down, in your case literally down. I call them Gods angels on Earth.
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Parry, good luck on your new treatment. You know that we will all be in your pocket! Wishing you minimal side effects. As far as worrying about becoming addicted to meds, my feeling is that our bodies need the meds to function. It’s not like we get pleasure from them. At this point in my life, i will do whatever I need to to keep the pain at bay. I don’t like the “ drugged” feeling either and so far am managing on Tramadol although it’s not as effective for as long as it used to be.
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Lynne, you are always in our pockets and today it’s our turn to be in yours!! Wishing you successful treatment with minimal side effects. Let us know if the icing is effective, I’ve heard that it can be very effective for neuropathy. Stay as warm as you can.
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Micmel, I know I’m not the first to express concern that you are going to run yourself ragged. You can’t pour from an empty cup my friend. Not a lecture, just genuine concern . I admire your ability to forgive and move forward, forgiveness is my biggest character flaw. I am not very good at it but am a lot better then I used to be. Try to rest whenever you get a chance.
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50’s Lynn I’ll jump in your pocket too! I dress extra warm for infusion days so no worries on the cold. Maybe my little rock will help keep you warm even with the hands and feet. Good luck today!
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Hello ladies. Hi Lynne 50’s good to see you beautiful.
Lynnwood~ I 100% agree with you, my back isn’t doing well and I am hurting a lot more than before. I am not napping like I was and my spine knows it. I ran into see him today for five mins. Grabbed the laundry. My step monster was there. So I took that chance to hit the highway. I need to rest my tweaked back. My goodness such pain. Wow. Thank you for being honest with me. I need to hear it sometimes. My DH also doesn’t want me over doing anything at all. I’m afraid I’m getting a cold. I’ve been coughing. Didn’t want to make him sick. I’m glad I get to stay home the rest of today and tomorro. The weather is my concern. This is so difficult. I can’t be a caretaker. I need one. It’s realh rocking my world and my body. They weighed him today. He Is 6”3 and now weighs 106 lbs. skin and bones. I don’t know how much longer this is going to go on. One week and I am in tears. I am forced to slow it down. Ugh! Love you ladies.
Hi Parry honey. 🌹💕 I also have to have my pills. Sometimes we have to do what we must to relieve our own suffering from this shit hole cancer.
ADDK~Welcome to our little home. Like cheers. Everybody knows your name. Pull up a stool and join team FU cancer! Welcome to you!!
Tanya~My poor sweetheart... I know how much it sucks to fall. Ouchie!!! I am so glad someone was around to help you. My goodness, I’m so glad it wasn’t worse or you broke something. Rest and ice sweet sister. Feel
Better soon! We are all so strong sometimes and weak others. I hope that it heals up quickly For you!0 -
Thank you all for your words of encouragement and support. It means a lot to me. I am home now. The infusion was uneventful. I did ice my hands and feetto try to ward off neuropathy. Some people on the taxol thread had recommended it.I hope it works. I also hope that taxol blows the cancer cells into oblivion.
We are expecting snow beginning tomorrow night. I want to run back to Florida.
Hugs and prayers from, Lynne
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Lynn, glad things went well! Praying for you to have no bad se's!!!!
Everybody starting new chemos, thinking of you today as I do #20 weekly Abraxane!!! Praying it keeps the cancer at bay. They aren't using the port, I think my Inc is going to send me to the surgeon....time will tell.
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Parry I will miss you by one day at UCSD. I am heading there tomorrow morning for MO appt then blood work and chemo if my platelets have improved. not sure about that. I checked symptoms of low platelets and dizziness is right at the top. I have been dizzy for 5 days and not enjoying it very much.
Micmel hang in there and REST.
Mae how special that you are with Alan Parsons, a true music legend! Enjoy every moment.
Lynne 50s sorry you had to return from Florida and go right to treatment. I hope it is easy for you. It was for me but I only had 3 treatments.
Everyone I am thinking of you all and hope we can find a piece of joy today 😍.
Donna
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Parry~I got hit with the cold This evening... I am down for the count. Early sleep tonight and there is talk of snow. This cold really sucks outloud! I hope it doesn’t linger. There is too much going on for me to be down with anything. My back is really really hurting. Straight down to the sciatica nerve which is just plain awful sensation like an electric charge running down my leg...
love you ladies.
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Donna~Thank you for the kind words of rest and sleep. I am going for bed ASAP for sure. My energy is gone and I have a terrible headache. This cold is a doosey.. hope none of you ladies get it!!
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Tanya glad it was uneventful. I’ve had nurses recommended ice as well so hopefully it helps.
Micmel noooooooooo! This cold has been one of the worst for me so hopefully you fair it better. Mucinex liquid medicine and Fisherman’s Friend cough drops have been wonderful aside from good ole hot tea with lemon and honey.
Gracie crossing my fingers for many more treatments beyond #20
Donna I saw your MO’s name on the ‘on time’ board so we do go to the same place
I like the new facility with the private infusion center. I’ll be there tomorrow too! It’s like a part time job with all the appointments, haha. Tomorrow I’m at the pet/ct building though to see about zapping these brain mets.
Today I didn’t actually get any chemo. I knew I was supposed to start to Gemzar, but the Neuro onc never put in the order! But my MO wants to put me on the Gemzar-Cisplatin plan. She compared skin photos and agrees Halaven isn’t working. Next week will be a new treatment. I’m nervous as she said this one is really hard on people and they do t typically do the Cisplatin for this reason. I’ve already had Carboplatin though (which is the normal pairing) and am worried my cancer is resistant to it from last time. She also said she doesn’t know how many lung tumors there are, but I’m not very symptomatic so # doesn’t change plans. Boo. Wish me luck that they can do something about the brain mets tomorrow
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Parry, prayers for a better day for you tomorrow!!
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illimae so amazing for you plus these pictures are heavenly especially for this evening of us freezing in the Midwest for what has been a brutal winter. Enjoy and live it up
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Micmel, stay in bed and rest today! This weather is brutal! I opened my black door for a second and it was all icy rain falling. Perfect day to stay in and rest. Don’t forget fluids!
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Lynwood, totally agree with what you said to Mae about her pictures! It’s been cold and rainy here too, so pics of beautiful weather, beaches, and tropical waters cheer me up too!!!
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Parry how did it go today with the brain mets. Any determination on zapping them? I have to go get an MRI tomorrow because, since I have been dizzy, MO said that any nuerological changes make them want to check for brain mets. Oh joy, she wants it ASAP and the only time this week available is tomorrow night at 10pm. PETs I can do, but MRIs freak me out. I will take my drugs and put on my eye mask and do deep breathing. Then I have to go Sunday for a possible transfusion and again the following Friday for another possible transfusion. This is getting to be crazy time consuming. Finally got PET results from 2/4 scan. Out of four liver mets two stayed the same, one is responding really well and shrinking, and one has slightly higher SUV uptake. 2 lung mets are static, adrenal glan met is static, lymph node met is resolved and one spinal met is resolved and one is on the way out. Phew. I am staying on Carbo/Afinitor.
Micmel, I hope you are having a restful day and taking time to treat that cold. Pay attention to your own needs. You are the one who is important right now.
Donna
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Thanks everyone. Sounds like the weather is being icky for almost everyone. Great time to break out the cards & puzzles...I’ve been working on one for a while that’s proving very hard.
Donna it went ok. They are going to do 1 SRS session and try to time it for my Gem/Cis chemo off week so I don’t need to miss any chemo. I don’t get to reuse my head mask so that’s another day & car ride I have to make. I’m not supposed to drive but hubby has to work so every extra appointment is hard. I’m just glad they can do rads. I’ve noticed my balance is a little off and so I told them I would like to make this as expedited as possible and it sounded like we can get all the scans done in the next week or so. Great news from you scan!!! It is tiring running back and forth for so many appointments. Cancer is a full time job. I hope the brain mri goes well and is clear. Could the dizziness be from low blood counts? Hopefully the transfusions make you feel better. When I go for MRI’s I try to take a nap or do meditation to relax. Sometimes I use the time to plan things I want to do and that distracts me. I have a breast MRI coming up and am going to try and get some rest!
Hugs and hopes for good things out to everyone0 -
I'm right There with you in the dizziness and headache. My brain mri is on the 21st. I've had gamma knife to one spot, I don't know the exact size but the Dr said it was the size of the first joint in my thumb. Sounded pretty big to me. Three sessions and it seems to have worked unless they find out differently on the 21st.
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Omg it’s actually the freaking flu. Second year in a row. Will I ever learn ? I didn’t get my flu shot. Only simply because I just didn’t want another needle, another doctors visit another co pay! My fault this I know. But damn. This shit sucks the royal big one. Wash your hands ladies. And if you haven’t gotten the flu shot. Please run run run to the doxtors. No sprint!
Hope all is well back to my bed! Ugh! Ugh!
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Micmel,
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Oh no the dreaded flu. Life is so strange sometimes. But the flu did answer your concerns about trying to do so much for your father. You are now grounded! Not only from the hospital but from everything. Your friends will leave soup on the porch but won't come in. I had it last January. I was in jail for a week. I live alone but friends and DD brought food, RX etc to my porch. Lol I was completely house bound and at the end of the week I was going stir crazy wanting OUT.
I want to write to each of you but my NYC trip is only one day away.
Tanya you injury made me cringe. Did they x Ray? What new treatment?
Mae you lucky duck! I'd love, to hear the story about how you got picked for that trip. Now you're a celebrity artist. Trip of a lifetime. WOW
Gracie you are so brave. I think I'm too. Chicken to do brain TX.
NYC here I come. Anyone live in NYC? I heard it's supposed to snow. I hope I'm bringing the right clothes and shoes, etc. Any advice? I really won't be in it much because I have to spend all day Saturday pretending I'm a model. Meetings with the designer, interviews, reporters, photographer, hair makeup, practicing with international models who will walk me drown the runway. Drop dead gorgeous hunks! Don't mind that a bit.I think I'm packing more shoes than anything. From sparkly heels to boots. But I can't wear my boots with my cocktail dress to the play. I did get my mom's mink in the bag. , It weighs 20.
Can you tell I'm excited?
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Grannax ~ represent!! Beautiful woman. And yes down for the count. My dd was just over with Pierre water for me and is getting my dads clothing and taking there in the am.
I hope you have an absolute blast. Soak in every moment you so deserve. We have our star stepping up again to represent us ladies. 🤩🤩🤩🤩 team fu !!!
Much love ~M~
Soup is sounding good right about now
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micmel— try elderberry! It seems to be all the rage this winter for cutting the flu time and symptoms down. I’d say check if ok with ibrance though. My mom bought it in liquid at natural grocer but I saw it at nutrition stores as well!
Get much needed rest, you need it! I feel for you, the flu is like double hell with cancer.
Grannax- have fun in nyc! I loved it there and want to go back so bad! I know I could never walk around much bc of my chemo though. Good choice trying Xeloda befor abraxane. Abraxane was hard on me and blood counts. Took it all out of me!
Sarah
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Grannax, will be thinking of you this weekend and praying things go stunningly!!!!! You are going to rock that runway!!!!
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I can't leave you girls alone for one minute........
OMG, Tanya-the knee looks ugly. Must be so sore. Hope it heals so fast- my DDs like Arnica gel?
Micmel-How absolutely rotten the you contracted the dreaded flu....just what you did not need. Operating word is REST!
50's- How are you making it? Glad the infusion went well. The snow is so pretty! If we are going to have winter, we may as well have snow...
skitz-my sister has had good results with elderberry...
Gracie, Parry, and Donna-placing you in my extra special positive vibes category with all you have going on. Love and gentle hugs.
Grannax-I saw a segment on the news about your NYC fashion show! I kept exclaiming to my husband " I have an MBC sister that will be there!" We are all taking a vicarious pleasure in your NY debut and cheering you on! Glad you are going on Madame X and I hope it's as tolerable for you as it has been for me.
Mae-Looks as though you are having a great time! Thanks for the photos!
I had liver MRI yesterday which made me aware of how tenuous our situations are. I thought of all of us and what we go through as I lay there in that tube of claustrophobia. The techs performing the procedure could not have been nicer or more caring, which helps. I am anxiously awaiting results and of course hoping for stability. Will be curious if anything is going on in the left lobe as Y90 zapped the right lobe last May. The MBC rollercoaster-a ride in some dark twisted amusement park...
Thinking of you Bighome, Muddling, Lynne(Man), Minnie, Lynnwood, dorimak, ADDK, and all of you dear MBC sisters....
Happy Valentines Day- Love always prevails, MJH
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Kingfield, Maine, my 2019 X-Country skiing debut. Very cold, but strikingly gorgeous. I was a little unsteady and fell about 3 times, but i made it ! and loved it! Power to us all!0 -
MJH!!!! You go girl!!! Gorgeous picture!! I so admire you!!! Your last post mentioned Arnica gel, that is the only thing that helped with my knee pain. My neighbor gave me some and I was very skeptical and pleasantly surprised! Highly recommend it. Waving hi to all, hope we all stay warm and well.
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