My Husband, My Life, My Love, My Family, My Cancer
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everything about the word cancer is terrifying, and everyone feels the way they feel and it's valid.. no matter who you are are what your “status is" can change as well. So it's just words that allow us to breathe that breath and take another step. Somedays I find the emotional depression enough to feel like bricks on my feet instead of shoes. Preventing me from even walking down the steps to even eat anything. It's paralyzing and knowing it is there period is enough to scare the hell out of you.
Nead or Ned bring no guarantees. It just merely means this is a reprieve from more extreme torture. There are still awful sickness side effects, from the medication we will never be free of, but to perhaps just change with out warning. The crippling exhaustion that nothing can penetrate.... even ritilan... as I have learned. It is like running an engine with no fuel with that last cough of fuel reaching the pedal to power through the last few feet before there is nothing left.. Cancer is the purest form of evil there is just nothing worse than any disease that one can never be free of. Everyone's feelings matter. Of course it's natural to feel that way. We all want the same thing. For sure. A cure. Or to hear don't worry. You're clear. I love each and everyone of you because I understand. Don't ever be afraid to say how you're feeling. Ever! This is hard stuff. Beyond imagination hard. I value every thing about you ladies. Especially, your words. You're all valuable and I wish nothing but NEAD OR NED for us all always. CURE would be even better. Much love ~M~
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Tanya ~ you must have a hole in your pocket darling.... I was there holding your hand. The pic line sucks! I don't understand where our veins went. Somedays it's like. My port is well behaved and other's it's. Clogged!! I am wishing you nothing but good results.
I have to laugh at your comment about the decorations. I am tied to what I can and can't do. This time it's not in my home so I have to wait to get into the venue. Which means the bulk of things can't be done until that day. But tonight I begin the rose petal Glueing. I have everything ready to go. Just need a million minions to get it done! I love you my friend! Much love ~M~
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Micmel, you are right. NEAD are four fabulous letters but CURE would be four miraculous letters!
I am sincerely thrilled for anyone who is NEAD and hope it stays that way for a long, long time. I'm still trying to get to stable but I am grateful that I'm better than I was. Some days better than others but trying to... muddle through as best I can. Today was the last Ibrance day for this cycle. I'm kind of 'whupped' at the end but won't feel a lot better in the off week if past experience holds true. I'm grateful to have this medicine and plan to hang on until the next best option comes along.
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Muddling~I am on my week off now and I am exhausted... I seem to feel differently each month. Last months week off was great. I felt good. Not so much this month around. My problem is eating. I don't eat much. I feel hungry, but Taste nothing. Makes it hard to want anything really. Casualties of treatment. I always watched that chemo drip into my body wondering what other damage would occur. Gastric issues for sure. Sometimes ibrance makes my vision blurry. Not a lot but it happens. Taste buds shot. Neuropathy in fingers and toes. Joint pain is awful...a lot of physical discomfort as we can all understand at some point. Just plain sucks!
Much love to all ~M~
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Tanya, I’m so sorry, I’m a pocket hog! 😆 sending good vibes your way right now.
Also, NED or NEAD would be nice but bone mets evidence rarely disappears completely and my MO basically told me not to dwell on that, stable is good enough.
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Illimae, stable is verrrrrrry good indeed :-)
Micmel, sorry your taste buds aren't doing their job. For a few months most things didn't taste right to me. I was grateful that turned around and most things taste like they should. The strange thing is that I now have a 'sweet tooth' when I never did before. So far I can keep it in check which is good because the letrozole is packing on the pounds even with me eating like a bird.
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Hi to all of you beautiful ladies! I was away from you for a very looong time. I stopped couple times here, but too exosted to write. The moving is officially over. We sold the house, moved with my DD for a while and now we are in our new place, which we bought 10 days ago. Still unpacking but at least no more pressure. Tomorrow PET scan......I hate this ...., because I am scared every time.
Sending prayers for healing and a lot of love to everyone. Elen
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Mae~ Maybe that is why I can't feel my ankle today. Lol stable works for me. I just want to live. We love you Tanya!
Muddling~ omg. Yes the sweet tooth is there for sure! Same thing for me. Never really cared. Now I love cake!!
Blueshine ~ I am so happy to see you. I hadn't seen you in a long time and was concerned. I kept mentioning your name hoping you were all settled and relaxed in your new home. I know scanning is hard, we all plain hate it. I am holding your hand even though you can't feel it. I am very happy to see you back here. Wishing you nothing but good results! Welcome back. Missed you!
Much love ~M~
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oh micmel, what a read 😥
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Divine, Lynne and Sheilamarie, I think as human beings it is in our nature. Well said, all of You. For me, stable is something to celebrate. We have to believe in a cure, sometime, maybe not in our time, but for those who come behind us, so our daughters and granddaughters do not have to suffer this.
Big cake fan here too, and dark chocolate, with mint if possible
Good night ladies. Sending positive thoughts to each and everyone. X
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Tanya, hoping you get a really good report
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Micmel, truer words were never written.
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it really touched me deeply. It was written by an oncology nurse who was diagnosed with breast cancer and finally “got it". I thought I'd share because I know you all get it! Maybe some of you have Even read it before. It just touches me to the core.
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~ xoxo
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BigB - somehow I just now saw your “secret” post. Lol. I won’t tell... I promise
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Thinking of you, Micmel, & sending you healing thoughts. Don't exhaust yourself with party prep - your daughter will have a wonderful time surrounded by the love of your family & friends. Save your energy for the party. (And I hope your taste buds recover in time to enjoy all the sweet treats you'll be serving!) Just wish I could be there; I'd help you decorate!
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Youre so very precious aren't you my friend. JKL!!! I have already begun. I started the official centerpiece petals that go around the mirror and I had to measure them. The glue needs to dry before I add more or it gets to heavy. Here is my starting point.
I'll be adding more pearls and a silver glitter on the end and some gems will Be placed around in every color. Then the cylinder vase goes towards the end of mirror with the votive candle between the petals here and the vase. I have Put so much planning into this.i am already tired. No matter what I do. I glue.a Few and sweat for an hour. I'll get it done somehow. I've always loved crafts. I just need another week maybe. Ugh! Hello to everyone.Shelia. 🌷. Mae 😊🌷.
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MicMel, so sad and so true.
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Micmel just as I imagine you and a glue gun and millions of sparkling things. I know you love it take it easy though. It's going to be spectacular and the pictures won't do any justice but please post them anyway. Thank you for posting the nurses revelation. I know people try but no one really gets it unless you're suffering through it.
Thank you all for holding me up today. I was really struggling and almost broke down when i pushed the button to be removed from the machine. My DH was there and stayed in the room with me. Gave me an extra pill and I avoided total emotional collapse and stuck it out. An hour and a half may be too much for the pocket guys but thank you always for being there.
Gracie thanks for reminding me. I want good results, stable NED and all that good stuff. That's why we suffer through this, just looking for a break a plateau. A feel good day.
I made an appt with a pain management DR. today. I've been enduring this back pain bc the meds are too much and make me feel ill, lethargic. I'd actually rather pop an alleve or tylenol and try to do something to take my mind off of it.
Again Thanks to everyone
Tanya
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Tanya~we love you, you are our sister. We will be here as long as we have breath in us. I feel like you’re all apart of my family. It’s a wonderful thing to have you all to share my inner most fears, when telling them to anyone else would scare them too much. Hugs to you sweet lady. ~M~
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Tanya, glad you were able to make it through your test. We will stay in your pocket no matter how long it takes. I also made an appointment with a pain management doctor in July. I felt like I had a lot of pain from different reasons. I felt that my pain was not cancer pain but treatment pain. I went and told them that I just needed guidance to get some pain relief. I got some trigger point injections in my back which helped a lot. They gave me Gabapentin which has helped immensely with not only my pain but my hot flashes as well. They referred me to an orthopedic doctor where I got a cortisone injection in my knee which also helped. She wrote to my onc to make sure that they were both aware of everything. I still have pain, but it is much better and a few Tylenol usually work. The pain management doctor assured me that she will help me stay on top of the pain, I’m so glad I went. Also a little mad that I kept complaining to my onc for months about the pain and she had no suggestions. I will address this with her at my next visit.
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waving hello to Lynnwood! Hope the funk has passed.
Tanya. Thinking of you. Shelia also.
This is my first finished mirror accent—-needless to say I have 21 more to finish. It takes a lot of time. But it's fun. I have many days to attack it. Lots of work this weekend. At the home stretch now!
Where has our lynne(Man) been? Hope all is well. Miss you! -
Hi Everyone, I'm back!
I was on vacation at a lake here last week through Labor Day. I unplug on vacation. My mother came. She looked pale and was having a hard time keeping her balance walking. She got lightheaded and out of breath quickly. Luckily we had a/c in the house we rented. She usually would go in the water every day. She never even put her feet in the water. I later learned from my youngest sister that she hadn't felt good in weeks, but was determined to not miss another vacation. She missed last year's lake vacation, as well as Disney this spring, because of her COPD. Tuesday, after an appointment, I stopped at her house (in the same neighborhood, and is my youngest's sisters house) on the way home. She was using her O2 during the day. She only uses it at night. Her O2 level was in the 90's while on it and sitting. Taking a walk to the bathroom (very close by) and back, with the O2 on, would drop her to the 80s. I told her to call the dr. She said they will just send me to the ER, She called, and of course had to wait for the nurse to call back. She said she should go to the ER. My mother told her she didn't want to go there, because it's always a 5 hour ordeal. The nurse said she would call her dr, who was off, and call her back. Maybe should could get away with going to Urgent care. An hour later she called back and said she should go to the ER, and they would call and let them know she was coming. We finished watching last weeks America's Got Talent, then watched the second show to see who made the cut. I said you're really delaying this aren't you? She said yes. I drove her car (easier for her to get in and out) there. My white cells were low, last week so I wore a mask. The place was packed. We waited an hour to get a bed in the ER. I had called my youngest sister before we left the house, to let her know we were heading to the ER. I called again once we got there. She was driving home from work and saw she had 2 missed calls.She called me, and I asked if she could come over and relieve me, so I wouldn't get any sicknesses. She was there in an hour and a half. She has been anemic for months now, but it was only a little low. The labs came back she was very low. She got a room (much to her dismay) and a unit of blood. She felt better after that. They schedule her for an endoscopy in the morning, the dr said. Well he forgot to schedule her. Her dinner after going to the room at 7 was half a banana and crackers, that my sister had brought. She was fasting, so no breakfast, when they found out they didn't schedule her she had to be squeezed in. They told her 2pm, so no lunch either now. She didn't go in until 4:30. They found some capillaries were bleeding and cauterized them. She finally got dinner at 7pm. She had to stay another night, and came home yesterday. She feels so much better, and looks better. That's why I've been gone so long. My 3 sisters came up to the lake, one stayed 3 days. My 3 older kids (my youngest is now in NY, I miss him!) and 3 grandkids came up different days, and all stayed over, some multiple days. The weather was great (well Mon and Tues were in the 90's and very humid, my sister and I floated in the water those days). Only rained one night.
I had my 2nd CMF treatment yesterday. My white cells were 1.00 and the Citoxin wants it at 1.5, anything under and they lower your dose 25%. At least I could get the treatment. I was there again for 3 1/2 hrs. Mostly waiting around to see the PA. Drives me crazy! So far so good for side effects. The running to the bathroom hasn't started yet...
I am so sad to hear about Keetmom. She will be sorely missed.
Sheila and Grannax-Sorry about the progession.
Magda-Beautiful gate.
Muddling and Mae, and Gracie-Wonderful news on your test results!
Lynne-I don't mind you sharing my story. If it helps someone, even better!
No-1-So sorry. Hugs!
Tanya-Hope they take care of that back pain quick! Hugs!
Micmel-When is the reception? This weekend? Boy you are putting a lot on yourself. Ask for some help!
Boy does this forum go fast! I had to read 6 pages to catch up, and take notes.
Seeing my grandsons today (I saw my granddaughter Wed). They all started school last week. The boys on Tuesday, and Ryleigh on Thursday. She's in 3rd grade (almost 9), Matthew is in 2nd (7 1/2), and Aiden is in 3rd (6 in Dec). Here's a pic of the boys first day, I don't have one of Ryleigh (the difference between my daughter taking pics all the time, and my son, who rarely does, and never posts it for me!).
Hugs and prayers to all!
Lynne
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Lynne those little boys are the cutest! I'm smiling just looking at their photo. That grin with the missing front tooth - priceless.
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Lynne's (Man)ears must have been burning. Sounds like one exhausting scary thing with your mother. I'm so glad she is feeling better. I hope you're doing good as well. You're such a strong woman being there for your mother, when I am sure you were already exhausted yourself. Welcome home. Get some Rest and great idea about the mask. I always tend to forget that. I usually end up regretting it. Good to see you. 🌷🌷and I agree with muddling. Seeing those precious faces made me smile like crazy. First day of school any year is a big deal. My DSS started his senior year this week,can't even believe summer is over.
Waving hello to muddling!
I am knee deep in rose petals and work. My back started to hurt. So I napped and woke up and started it again. I'll pick way at it. Tomorrow we steam and iron the linens. There are many many linens. Chair covers. Table sizes6 ft 4 ft 8ft round. Ugh! Busy week ahead. I can't believe the reception is one week away today! Wow. Don't know where the time went. I just hope I have a good feeling day!! If I don't feel strong and well it will ruin all this planning and work. That's why I'm spreading out all of the craft parts and at least I can sit while doing those. I have quite a bit done. Three more in the big size and 12 smaller sized. So. On I go! Back at it in the morning! Goodnight ladies hope everyone is well. It's supposed to rain here all week t better not rain for this day. I just hope it doesn't. ~M~ much love
Muddling.
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good morning ladies. Back to the rose petal push. Hope all is well with all scanner and waiting for results ! Love you guys. ~M~
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Micmel, you're very artistic and it's easy to see your passion lies in creating beauty and warmth in your surroundings and for special occasions. I look forward to seeing your finished rose petal centerpiece.Here's a photo of a beautiful mum I bought at Lowes yesterday. It was on clearance for 9 bucks because the pot it was in was cracked. Plopped it into this white pot I already had and it adds the perfect seasonal touch to the back porch. Lucy is patiently perched on the table waiting for me to open the door so she can go inside and eat.
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Divine, pretty flower and beautiful cat! We had a male cat with that coloring. His name was Kiki and he was a spoiled baby and he knew how handsome he was. I swear he would pose and preen, LOL.
Micmel, you will feel good on the day, we decree it. We'll be in your pockets holding you up and each sharing bits of strength. Slip us a cupcake or some chips when no one is looking.
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Totally exhausted !! Ugh! And I remembered something else that has to be done!! Arghh. The napkin rings. With the napkins. I have 12 large ones done and two smaller ones done. I have 10 more to go. Then I can start the napkins. I wish I had a clone. (Who didn’t have cancer ) my DH is kicking ass with the iron ! Thank god for him ! Much love ~M~
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