My Husband, My Life, My Love, My Family, My Cancer
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Jo~Pick some grande sized pockets! We will try to keep it down and limit the noise. We are with you!
Waving hello to GumDoctor! 👋
Hugs friends. ~M~
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Well Ladies, tomorrow is my 4 month pet/ct scan - cap to mid thigh. Always a little nervous but I've been on a kisqali break since December so we'll see if letrozole can hold the line. Looking for Texas size pockets
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JoE, I’ll be representing Houston and jumping in those big ol’ pockets. Any leftover peanut m&m’s?
Micmel, I had no idea you had previous lung issues, please be careful and well.
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Starting to worry about Parry! Thinking of you for sure. Miss your sweet funny posts. Love you sister
Mae~Unfortunately I had been in a tubing accident in September. 2009... injured my arm terribly. Fast forward five surgeries. My lung was a complication during surgery. That's why I am always dealing with respiratory issues constantly and reoccurring infections! It's another constant battle to fight and win. It was my right arm. Which is my dominant arm. But thanks for noticing. 💙
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Oh, Mel, I am so sorry you are dealing with this - you deserve a break! Here’s hoping that your pain goes away & that you mend quickly. You are a strong woman & have a whole lot of people pulling for you ... hang in there, take care of yourself & feel better soon!
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Micmel , good lord! I hope your lung is clearing by the time you read this. Choking is one of those things I fear, since I eat like a cow, chew poorly and swallow in a hurry. I'll be one of those statistics taken out by a wayward wad of weiner. But I hope you get your airways quickly in good working order!
Grannax, doing the happy dance that you have a team you are happy with. What a relief.
Divine, there is a Bonfire thread? How did I not know this? I tend to hang around the Steamroom For Anger thread and the Stupidest Things People Have Said To You thread, because I am a spiteful person by nature.
Tanya, your day at the beach looks so peaceful. I could hear the waves as they rolled in.
Muddling, that was upsetting to read you thinking you would die alone in the night. I am very glad that you are still here to write about it. Once I woke up when Hub's radio went off in the wee hours of the morning. He used to get up for work at 3:30 every morning and the radio was set to play a station, not some god awful buzzer. So the radio is playing and half awake I am listening when I realize, with growing terror, that I cannot understand a single word that is being said. I had a stroke! I bloody well had a stroke and I can't understand speech any longer! Oh my god, I wonder if I am also paralyzed... no, I seem able to move all my limbs and everything. Then the announcer came on and said we were listening to Radio Netherlands. Everyone was speaking Norwegian and here I am flipping out that I've had a stroke. Since when does our radio station just up and start broadcasting from Norway in the middle of the night? Stupid radio station. Muddling I hope you get on a friendly frequency and feel better.
I had to write a list to keep this straight! Tamoxifen induced brain fry.
Parry... we are thinking of you. Hugs to all.
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Micmel, very scary time for you indeed! When fluid or food goes into your lung it’s called aspiration. The problem occurs when this causes an infection because it’s not supposed to be there. They call this infection aspiration pneumonia. Different then viral or bacterial pneumonia. It is actually quite common in older people, we used to see it a lot in our nursing home. Antibiotics are given so that’s a good thing that you are already on them . Thank goodness you are getting medical attention. The chest X-ray will give them information about how bad it is. You are already compromised because you have previous lung damage so they will be keeping a close eye on you. I’m sorry that you are having pain, no doubt from the trauma of trying to clear you throat and breath. Sending a prayer that you feel better soon. Please keep us posted.
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Back to the subject of people saying the darndest things about MBC DX and just not getting it, my SIL takes the cake.
So, two years ago I told all of my family and friends about my stage IV cancer, TWO years ago. My DD helped by texting cousins etc. She also talked a lot with her aunt, my DIL, because she is hard of hearing, etc. Fast forward two years, I'm in a group text with ten family members getting updates on a cousin's new baby who was born with numerous deformities and is struggling to live.
Somehow, we got in a discussion about how I was doing. I texted about going to a new doc and how I hoped she could help with my growing mets to liver, chest and lung. I said something about stage IV cancer being full of ups and downs with constant changes in tumors depending on whether it's responding to treatments. My SIL said Oh Vicki, I'm so sorry. When did this happen, stage IV. Oh my you must be devastated!!
I used every ounce of diplomacy I had to explain without making her feel like she was dumb for not remembering. I've been at her home numerous times during the last two years, I think in her mind, she just couldn't comprehend that I could be active and helpful if I had stage IV cancer. An impossible concept to her, evidently. Sometimes, we just have to laugh.
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thinking of you Joe~. 🌹🌹
Grannax~I had someone say oh I forgot you had cancer because you look so good. You're hair is longer than mine. Wow how did you do that? And she meant my hair. Nothing else mentioned or asked about my disappearance of cancer or anything so weird as that. People are just dolts sometimes for sure !
Runor ~Hello sweetheart your posts always make me smile I am always so wishing we could all gather together and just be! Hugs my friend!
Lynnwood~ yikes!! I am a mess I'll admit it Somedays I don't know how I even move honestly you all know the funk days , then the anger days. I just can't kick this bronchial thing. That scares me alone. My tumor markers were low again. But I always get scared every ache and pain. 🥵🥵🥵so annoying to be forced to live this way. I believe MBC is a curse. You look normal, but not one damn thing about this is normal, I mean nothing. I cant even wear the same clothing anymore. Swimming? Now that's a horror show I would never force anyone to witness. Uh no I care too much for humanity lol. Thanks for the info. I'll pay close attention! Going to nap already! Worn out!
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Good afternoon all
We’ll be there with you tomorrow Joe.
Tanya
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I'll be in that big pocket for you Jo. Could you put a Lone Star long neck in there for me to sip 🍺 lol!
Donna
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Hi everyone. I’ve been a little mia in my own headspace trying to handle everything going on. I’m still sitting in pockets for all the scans and doctors trips going on. Aside from that I hope you all keep on keeping on
Tanya, I love your spontaneous beach trip pictures. The very last one looking into the sunset made me think it just captured the feeling and community I find here. Plus the beauty and sense of peace and love I get from it actually brought some tears to my eye. Glad you got to get out and enjoy some beach and time with loved ones.
Mae yay for stable!!!
Donna I'm so glad you got a good pic of the bloom! My husband has had to make sure I stay in the car trying to take pictures of the side of the freeway with all the purple and various flowers and plants blooming...so pretty. And people really don't understand stage 4. People ask me all the time 'so when will you be done'?Uh...when you get a invite to my funeral? Really people....UCSD has a new Immunotherapy trial I’m on the wait list for. I wonder if we will bump into each other one of these days and not even know it!
It's hard to deal with the ignorance, but I was once one of those people too. Patience runs thin on cancer for me. Hope you are well otherwise. Have you seen anyone for palliative care yet? My MO wants me to start seeing them for pain and care and to decide when hospice is the right choice. Hope we make it to Texas soon! I have found 2 dream homes so far and I don't want to lose more!
Joe I'm in your pocket for you scan. Today's snack is hard candy to combat dry mouth, lol. Very exciting I know.
Muddling Last week I had a similar experience. I woke up and couldn't use my arms well and I didn't feel good. I couldn't explain it better than that. I could barely walk and I needed to go to the ER. Called hubby to come take me. I was sure if I were to go in I was coming home again. It was sad and scary. Turns out I was super anemic and needed some food. Glad you are ok too.
Rurnor, that radio incident would make me so mad for all the freak out it would cause!
Micmel, Get well soon! We will need to put you in a bubble to hide from all the germs when you visit your dad. I can honestly understand his tantrum. He knows he is sick, is it too much to ask to have your one thing a day that helps you relax or w/e his reason is. My brother's dad (not my biological dad and we only met a few times) moved across the country to live with my brother because he was told he had maybe a few years to live. He needed to be somewhere else with better air and climate to help his lungs/COPD out. When he moved he got super pissed the tv guys would be a day late. When all you do during the day is have your shows you watch at certain times and things you've built a schedule/day around it's very frustrating to have that structure removed even for a day. At least your dad calmed down after he got his drink. Love you sister, hang in there! Beat this darn cold!
Hugs to everyone posters and lurkers and sisters taking a break
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Things here have been so up down I don’t feel like I have time or energy to post! My bff backed out of our trip because of an obligation she forgot about cake up. Well I’m supposed to be starting a new treatment in the next few weeks. I won’t know when the infusion lady will be or how sick i will get or the dosing schedule so unless we go now I don’t know how long it will be till a vacation time opens up. I’m thinking maybe hubby and me can just go. He needs a break. I’ve been having a hard time. I get these micronaps often now. Being on my phone is a trigger. My hope is it’s a temporary SE from brain radiation. I have a torso and pelvis CT scan today. Scared about what they will find. I had my MO list all the mets locations so I can keep track. There’s this new area of concer right behind my breast bone. MO says maybe lymph nodes. I have palpable lymph node tumors in both underarms, an areas of concern by my collar bone and hip bone both right side. Good need is I had a biopsy this week on one of the tumors in lefty to see if any new mutations are present or anything that would help treat me. Pain management is still a huge issue. I’m on a lot of strong drugs my MO said she isn’t sure what else to do so palliative care team here I come. Brain MRI isn’t till 4/15 to see if radiation helped those 2 tumors. There’s only 2 roads resulting from the MRI. If it killed them great and if not then there’s nothing else they can do. I want to be positive for all those out there but sometimes it’s just not there. My body feels like it’s dying. Slowly losing the tug-o-war. Dismal I know, but I don’t want to hide what I’m really going through. I still have a lot of good times and I don’t focus on the bad or try not anyways. Hubby was finally able to talk about some of my wishes for my final wishes. He was upset my brother wants some of my ashes to turn into a gemstone. I love the idea of Turning ashes to diamonds. My brother isn’t taking all the ashes and what else are they gonna do? Sit in an urn and gather medust till he gets dustified and we can get mixed together finally. Then be returned to the earth, wind and water as one. That’s what’s I Hope happens anyways. We will be driving up to see our parents Friday..exited for that but nervous. They worry so much and they will see I’m not doing well. Mom wants to come live here on the sofa to take care of me. I should be taking care of her now not the other way around. Anyways, sorry for the long rant. Hope you all are doing well or will be soon! I’ll try to take some pretty blooming pictures on my way to scan today. Oh, we are also attending a cancer and cannabis class tonight. I’m interested in what they have to say.
Cheers
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oh Parry, I wish I had something brilliant to say. I found this somewhere at some point in time. I think I found it in a book I can no longer remember which one. It makes me feel a teeny bit more at peace with this journey called life (and the inevitable death).
"There are the years I will not live, but set against the vastness of eternity, the time I've lost is but a moment. What is forever is the same as if I'd lived another sixty years or more: those I loved will always be a part of me, and I will never cease being a part of those who loved me."
Unknown author
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Sunset, I’m so glad you shared that. I’ve been feeling that way for a long while. It’s how I explain to my hubby that I know we will be together and this time we are apart will be like a blink compared to the forever our souls will have. To my family and loved ones it’s how I explain things as well. Unfortunately I am not so eloquent or graceful or to-the-point and end up with a mess sometimes. This quote you found summarizes it for me nicely. Glad I checked back in today...funny how God cooks sometimes.
Hugs
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Parry~My sweet sister. I was so happy to log in and see your beautiful words. I know things are hard honey. I know how frustrating flying as a piece of clothing on the clothing line. In the breeze. No control. Holding on by one clothes pin. But you are holding on, and we are holding on tight to you. Your sweet DH will never accept anytime without you. That's what real love is. My DH. Just wants to be around for our grandchildren, even if I can't be. Holding them for me. Telling them stories of me. Stories on how I put away special things for them. I never thought I'd see my DDmarry but I have. No one knows what is in store for us. But I feel somehow. Someway something has to come along to be your ticket. I will also accept nothing less. I love you my sweet sister.
Abeautifulsunset~ Thank you for sharing that beautiful special thought. I wrestle with feelings of Leaving my family. My babies. My son, the other day. For the first time. Realized what I actually have. I don't think he really knew it meant I was dying. Somehow it finally sunk in to him. He laid in my arms and shook and cried. Immediately, again I hated MBC more than anything I could possibly throw at an automic sized atom Bomb at.
I saw my young little toddler who hadhurt his knee in my arms again. Although he is 22. I can't let go of that feeling of they are my babies. The realization, of loosing my father and loosing my physical strength and being. It Is paralyzing, after my episode yesterday. I can tell I am getting weaker and weaker. Steam is steaming away. I am praying some how I can kick this. It's been a month. Doesn't make me feel so good worrying that perhaps this shit is moving into my lungs. But then I go back and forth, the doctor said they were clear. I am just so terrified of constantly having to live terrified everyday. My heart is breaking watching my father die. 💔🥵 I'm loosing my steam. God help us. (I also struggle with my faith also. Just to throw it out there ). Love you my sisters. Very much
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~BIG~soft~HUGS~ Micmel
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Parry~ and my other sisters. and Leslie!!
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Good morning ladies~ I hope everyone looks outside and sees the sun this morning. Hugs to everyone.
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.......words to live by.........Much love ~M~
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Micmel,
I read your story and I choke back tears...
If I could send you flowers easily...I would. Instead I send you virtual flowers from my favorite room...my safe haven...
We can be grateful we are still here to enjoy the beauty all around us...
Gumdoctor
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Some days I do not really want to live this 1/2 life that I've been afflicted with. I want to be what I cannot be. And I'm not really sure how to get over that.
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Gumdoctor~My heart sometimes has a mind of its own. I wrestle with being ok to leave his earth. Because my DH is so special and it's so much for him. I deeply love him and sometimes loving someone means letting them go. We may not have that choice. He should be happy, I feel guilty that I have become this unpredictable burden he worrys about. Life is so hard enough. Throw in a diagnosis like this and it's a blown up life with too many shards of it to ever be put back together again. Knowing this. Will be the same type of effect if and when I die. My children. Will be the ones who suffer. We are so very close. It breaks rivers to my eyes just typing this. I feel broken and powerless. Thank you for sharing your beautiful place with me. With us. It's nice to catch glimpses of beautiful places other sisters are. What makes them happy. Is important as well.
A beautiful sunset~youre not alone, I am living the half life as well. I struggle with who I am and have become so much inside. It's difficult to accept who I am now. Today was so hard. I showered, visited my father, went and got my medicine, came home for two hours to rest up. My step mother asked for my help with taking my dad outside in the wheel chair since it was so nice. She and I wanted him to have a change of scenery and fresh air. Luckily he was too tired to want to go, but I went back anyway go meet her there. Second visit of the day.... he asked me to stay with him until he got his medicine and fell asleep. Which was about an hour and a half. So I did. And we talked. It was nice special time alone with him. We watched gunsmoke and Andy Griffith. I found the old channel he likes. He smiled that I knew it was Gunsmoke.
I live in fear and honestly love in fear. Because while love is the most beautiful thing imagineable. No one can bare to loose it. It's cruel and mean. Especially this way. I love my life. I love everything about it. Every single thing. Except cancer. I would need nothing. No other ever. I have three such wonderful kids. I love my best friend Iike a sister and there is no other closer woman to me on this planet. I have gotten my sister back, whom I have desperately missed but didn't realize after all those years gone. My step mother realizes I actually am a wonderful daughter who loved and loves my dad unconditionally. She can never take that away. The past three years of my life have been spent mourning and grieving who I was before cancer. I want to carry my father. In which before I would be able to with no problem, at all. Then later this evening after a looong day. Our dog Tag has his second stroke. HEs swaying and his back two feet aren't working and I had to carry him up the steps alone. It took every ounce of strength I had to do it. I'm scared tomorrow will be my last day with him. If he cannot get up and down the stairs, it won't be good. We have three floors he needs to handle. I can't carry him. He's over 62 lbs. I did it today and I don't know how.
I care for each and everyone of you. So remember you're really not ever alone. Not truly alone. There are phones and face time.
Love to all.
Daniel? Leslie? Grannax. When is the gala??!! Minnie?? You ok sweet lady. Marianelizabeth? Mae? Dodgers girl....Hi Parry my sweet. Gracie. Still waiting .... Bigbhome... joe......thinking of you. ... Rosie... Kayla.... Katyk.....lynne(50's) you ok darling...? Runor......JKL....holmesJFL......Lynnwood..........Tanya....Muddling...BooBoo!....Vlmph.........Donna...Bella......Roseabella.......miss Bianca....footprints....GP....Elleonwheels.............Blueshine....I changedmyname..stilllivin..and of course if I missed anyone you. know I'll be back! Hugs to you all special ladies who linger but don't post (honey and others)
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Abeautifulsunset,That is how I’ve been feeling a lot lately. Even though I have plans and stuff to look forward too, why? What’s the point?
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Stilllivin~Everyday I feel the same way. Lately for me. I just try to get through the visits with my dad. Im used to napping and resting. I am wondering. If I keep pushing myself. It will either keep making me sick, or ill somehow adapt. But today I pumped myself with pain pills. I try so hard to limit them. Whenever I was born, I think someone forgot to include a manual on how tos. How to live with shitty cancer. How to still function or be what others are used to, as well as what we are used too! How to just accept like the doctors seem to think we should.
Next......damn ugly pink gown.. sit on table....results...exam..... discussion......silence... still shock..... all of a sudden you're walking. Back to living half life again. No choice. Love you friend. ❤️
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parry i hope that your treatment is the miracle that you need. you are in my prayers.
micmel- love the plants! they wouldn’t look that way if i had them. lol it’s great that you’re getting these special moments with your dad. micmel i know how you feel about every little ache thinking that the cancer has moved. since starting ibrance i have been a mucous factory. yuck!!! this month was really bad. i got such a bad headache i went to the er. the good thing is that they did a ct scan and my brain is clear. just these darn sinuses!’ i hope you feel better soon
mae stable is great!!!! you’ve been stable for a while now right?
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Up at 3:45, yes 3:45 to catch a flight to Milwaukee. Then a strawberry vodka lemonade and cheeseburger at Sobelman’s for lunch. Now it’s bedtime as I, my bff and her 3 kids head out to the Wisconsin dells for the weekend in the morning.
I hope everyone is well and doing your best to enjoy the day. Sorry for those of you struggling, I wish there was something to say or do.
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Life really is funny sometimes. Yesterday, I was thinking to myself what a relief it will be when I go. Not that I want to hurry it up or anything, but seeing the stress and burden on my loved ones. My own burden and pseudo life. I just thought when my times comes it will be ok and I hope that my family can be happy that I’ll be free and they will be too. Right now I’m working to find things to look forward to that make this struggle not so ugly. There is definitely a roller coaster of emotions. One week things are good and life isn’t bad, then there’s the bad streaks. Seems like many of us are in a down slope right now, but just you wait...the up is coming.
In trying to get my ‘up’ back I’m planning a little road trip with my bff/sister up Pacific Coast Highway from San Fran to the Redwoods (almost Oregon border). It’s such a beautiful place I don’t see how to not be in awe of those forests and coast. Plus, we are doing a horseback ride. I love horses and have only ever gotten to ride and be around them very little. I’m nervous because of my open wound stuff, but I don’t want that to hold me back. It’s taken too much already. Not sure what the kick will be to feel happier again, but it won’t happen with me not trying I suppose.
Hi to everyone 😊
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It is not possible for me to keep up with all you especially how Micmel does but I do read and think of all you as i do. I am here and caring in my own way for your sadness and happiness and family worries. Do the best you can, each and every one of you. I am looking forward to Game of Thrones starting in APRIL.
Marian
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Yes. Game Of Thrones. Marianelizabeth
Parry~sweet hugs. You should go and see those sights. Oh yes you should. I often feel the same way. I understand. So precious you are.
Mae~ sweet Mae. Rockin and Rolling along. I am going to start pushing myself more. I mean what do I have to loose. This time is so important!
Would you believe that my super dog made it again. How many strokes can one dog. Have ? Amazing. I love this dog.
Love you all!
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