My Husband, My Life, My Love, My Family, My Cancer
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Oh. Candy~ I m so sorry for that loss. This beast is enough for us all to handle. There is really no one I know either. I met someone in the infusion center when I had blood work last month. We held hands and stared at each other. No words needed to be spoken She was older than me but at that moment nothing else mattered but knowing how the other felt. I long to see her again. I hope for her every night. Just like all of us.
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Candy, I am so sorry to hear about the lady you met in October. 40 is so young. This disease is a beast. When someone dies, it reminds me that I am not in the clear. Things could change at the drop of a hat for me, so I had better enjoy my relative good health now as it can disappear anytime.
Mel, hello yourself.
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Booboo sorry to hear about another chemo plan Maybe second opinion. Sucks man.
Candy sad to hear about MBC and dying young. I hope emotionally you’re ok these stories affect us to the core.
Mara you’re right makes you think about how we feel today bc tomorrow God only knows.
Everyone’s trees are bright and beautiful.
Tanya
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BooBoo. sorry to hear about your onc who doesn't seem able to read the signals you're sending. It must be exhausting.
As I get older light has become more important, because my eyesight has taken a serious hit. I sometimes wonder if it's not the tamoxifen, but I have cheater glasses in every room of the house. Daughter tries to show me something on her phone and holds it up by my nose. As if I can see anything that close. No, out here, as far away as my arm can hold it, while I squint and give it side eye.
I resent that I make an effort in front of the bathroom mirror to look presentable - you can put a silk dress on a sow and it's still a sow - but at least I try. Then we arrive at our destination and I flip down the visor mirror to make sure I don't have food in my teeth or something suspicious flapping from my nose and that's when I spy it. In the slanting sunlight beaming in the window of the truck - a chin hair so big that Tarzan could swing through the jungle on it. Good god in heaven! I can't go into the gathering with this THING sticking out of my face, this tether, this cable! But do I ever have a tweezer in my purse? Hell no! That would be sensible. So I shuffle around looking for a lighter, convinced that I can burn it off if I just quickly stick my chin in the flame. By this time Hub thinks I'm trying to light his truck on fire and takes evasive action. Bats the lighter out of my hand. I shriek at him, "Why didn't you tell me I have this thing on my face! How can you let me leave the house knowing this is how I look ?!" He says, "What are you freaking out over, you should be used to your nose by now, so it's big. Get over it. " My horror escalates to a whole new level. "My nose?! Do you think I have a big nose? How long have you been thinking this? Oh my god, I can't go in there with a big nose AND a massive chin hair!" Hub quickly tries to make it all better. "No one will notice your nose or your chin hair considering the shirt you're wearing. "
This is why Hub goes to a lot of social events by himself. Light matters.
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Boo - I think the 'many treatments left to try!' line goes along with the 'women have been living many, many years with this' and 'we treat MBC as chronic disease now' statements. Sure, they are true for some, but not most, with (as we all know) varying degrees of success based on individual biological differences that cannot all be known at this time, let alone how they may interact with the drugs currently available. They are statements to soften really tough conversations and decisions on both sides amongst too many unknowns, where side effects are abstract until they are real. Maybe they can come up with some VR tool to help these doctors understand what they are dishing out. You take care and get that second opinion.
Candy - being young with MBC is really lonely too. You don't fit in any of the age or stage groups - the older ladies who've been through one war only to get MBC in their 60s or later, the late de novo group, the late 30s/40s in the low stages, the gen pop in your own age group. The cancer experience may be the same, but the life experience isn't and it really brings into sharp relief the shit hand you got dealt. At least online its almost age blind and easier to feel part of the broader crowd.
Cold/dark/cloudy here today, the cats are driving me and partner bonkers, and the house has GOT to be cleaned, although partner is sounding like he needs a bit of a break from demands (me, cats, work). We've always worked well as a team and watching him try to juggle all this stuff right now makes me worry. I encourage him to hang out after work with his friends, or to get out on the weekends on his own for a very long walk and record shopping, but I wish I could help out more.
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Runor,
You could have a career as a comedy writer. Once again, you had me roaring. Thanks so much for that bit of levity in my day!!!
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Have to agree with you Bev Jen! I woke up to read and immediately roared with laughter. Damn you’re funny Runor.. I adore you sweet friend You make me laugh so often I feel so lucky we Are friends. I was literally cracking up. Thank you..... LOL
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Sondra~I am desperately always trying to help my DH. I always feel less than. When this plate of beautiful food plops down in front of my face. I'm starving and he knows it. He is thoughtful and kind to me in ways only a compassionate person could be. He amazes me all he does inbetween working and everything he does.
this week will have been the 12th he was hit in his vehicle driving down the highway to work. I am thankful this year for my family and being here with them another year. Sometimes I wonder why they want me around. I basically just sit there. I'm trying to get more productive by meeting mister adderall and he has helped me. I just want my old Micmel self back. Anyone anyone? Buhler Buhler?0 -
runor,
Thanks for the laugh this morning. The way you wrote it made me feel like I was sitting in the car with you watching\hearing the whole dialog.
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Runor, I definitely agree, you are certainly funny.
I am happy to report that I got rid of the blue light in the house. Waiting for new LED bulbs that should be yellow but did buy 2 pin adapters so I could put my halogen bulbs back in while waiting for the new LED to come. The yellow light is much better for me. Love it. Keeping the blue bulbs in case I ever move but I will never use their blue looking flourescents again. Felt like my kitchen looked like a prison.
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All,
Thanks so much for your replies and suggestions. This is why I feel so good about bringing this stuff to Mel’s living room. No one else truly understands but those of us who have this crazy disease. Your support means the world to me.
So I found an onc with Baycare, which is where I have all of my scans done. My Cardiologist and Pulmonologist are also with Baycare. I made an appointment in early January, and cancelled all of my other appts. with the old onc. I feel like a weight has been lifted. I know I made the right decision, and I can’t wait to meet my new MO. We are very fortunate in the US to be able to switch MOs at will. I am very grateful for that. Will let you know how things turn out.
Runor, I can’t believe you wrote about the facial hair. We had friends here for a few days, and my girlfriend and I rode in the backseat on the way to a restaurant. She leaned over and said, “Oh my God...you have a hair on your chin so long, it’s starting to curl.” She plucked it out with her fingers...that’s how long it was! So I’m with you....time to carry those tweezers in our purse! You do crack me up, woman!
If I haven’t said it before, or enough, I love all of you ladies! You make my life better just knowing your support is here anytime it’s needed. God bless you all
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Booboo, glad you are switching out your MO. Hoping the best with the new one.
Runor, I would have chin hair but I shave my face and chin every day. You can't see the facial hair as it is blonde BUT I cannot stand it. The final straw was when one of my nephews was younger and pulled the facial fuzz along my jawline. I just use a regular razor since I do it every day. I cannot stand tweezers as they are too painful.
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I’m in the hospital a few days with pneumonia. I really really want to go home ugh. The people are nice but the food is awful and you can’t get much rest. In fact I’ve been waiting in Er for a bed to open on the floor One opened today so to a room I go. I hope it’s more quiet with an un-bad roommate This is my first hospital stay in 24 years. My heart rate is up from anxiety. I was up all nights having tests and labs and changing beds then changing rooms. If I dint get a fever today I might be able to go home tomorrow let’s hope.
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Moomala, I am so sorry you are in the hospital. May you not get a fever so you can go home with whatever medication needed to boot this bastard out of you. Hugs my friend.
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Moomala,
Thinking good thoughts for you! Hope you can return home soon.
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Moomala, sorry to hear you’re in the hospital. But I hope the tests give needed info for your treatment, and I’m glad you’re getting close attention. I know the atmosphere is lousy though.
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Moomala~I am so sorry you have landed in hospital with pneumonia, my goodness you poor woman. Please make sure you’re getting the best care possible. Pneumonia is a sneaky thing. I hate hospital food also, and I hope you have NO roommate. So you can get the rest that you need. Only rest will help pneumonia and a boat load of strong antibiotics..... rest all you can sweet woman. I wish we could come visit and be supportive in person. Sending you healing hugs...
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Moomala, sorry to hear you landed in the hospital. Praying the drugs work quickly so you can go home.
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Oh Moomala - thats awful! And I hate how at the hospital they take vitals like a billion times and you realize how much higher your blood pressure and heart rate is in that environment. Best of luck to getting those nasties knocked back so you can go home and rest in your own bed. Like, actual real rest, not whatever that is they call in the hospital.
Feel better soon!
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Plopping down on Mel's sofa to visit a while.
Mel- Your story of meeting the MBC lady and "We held hands and stared at each other. No words needed." Beautiful. And YES so true.
Mara- " When someone dies, it reminds me I am not in the clear" YES. I am stable now and I relish in that, but.....
Tanya- I am ok. Just weird that I met that lady in Oct and in Dec she is dead. She was in pretty rough shape in Oct, but.... wow. May she Rest in Peace.
Boo- You have a plan, girl. See what the new MO thinks. I will be praying for you.
Moomala- So sorry you got pneumonia and landed in the hospital. Prayers to you. I made a note that you were to see neuro doc this last week. Did that happen and I missed the post??
I try to make notes of everyones upcoming scans and doc visits and try to follow up for the results. But sometimes I miss some. I have been on the phone ALL DAY today concerning changing insurance carriers in Jan and checking with docs and pharmacies to make sure they have the new info and verify coverage. Good grief. Makes you want to pull out your hair.
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Moomala,
Prayers for a speedy recovery, and that you get out of there soon. The last place in the world to get rest is in a hospital. It’s crazy. You’d think it would be the opposite. I was in for 4 days last year and literally cried with relief the day I went home. I was so tired, I slept for 14 hours straight!
Take care. We’ll be thinking of you
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Hello everyone. I have been a silent reader since inception of this thread. It’s such a warm and loving place that Micmel has created. Thank you, Micmel.
I was recently dx Stage 4. Sure didn’t take long to get back into the world of phone calls, schedules, tests, meds, etc. I had forgotten how involved the patient is with all the set up. I think I have spent half of today on the phone verifying if a doctor is in my plan, or setting up 100 (slight exaggeration) tests and appointments.
Had an MRI this week which resulted in my new diagnosis. Mets to the thoracic spine. Next week is a PET scan to see where else mets are. Later this month, a brain MRI. Freaking me out. I am glad my MO is being thorough but didn’t expect brain MRI without symptoms. See RO later this month. Hoping rads will quiet my back pain. It’s been difficult to sleep at night due to pain and hard to sit at my desk for work
Learned this week how hard it is to tell your loved ones that you are terminal. DH is taking it really hard. I find myself comforting him. He has been by my side for 43 years and will be at my side through what’s ahead. There have been lots of tears.
Looking forward to sitting in Micmel’s living room with all of you!!!
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Moomala cringing at you in the hospital with pneumonia. I pray you get released healthy and soon! Keep looking out the window and soon you’ll be outside.
Booboo I’m happy to hear you’re changing oncs. We go through so much with this disease we don’t need insensitive doctors. My ONC lost his wife to MBC a couple of years ago. He sits with the conversation in his office and doesn’t act like he has anywhere to go until I ask all my questions. I appreciate it.
Candy I meet and talk to patients in the waiting room but I haven’t shared my contact info with anyone yet. I started to once but the lady stopped me and now that I understand the morbidity of MBC I know why she didn’t want to befriend one of us. Ugh
It’s a cloudy rainy day in FL. Having some painting done and painters are off for weekend so living in an organized wreck for awhile. House in dire need of paint since my daughter and 5 kids stayed with us for 2 years.
Have a good weekend all
Tanya
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Welcome dodgersgirl we pray for treatable results for you and your DH. There's no easy way to hurt our loved ones with the MBC news. Sorry you're on this thread
Tanya
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Tanya,Thank you
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Damn dodgersgirl, welcome but I wish you weren’t joining us “officially”. So many tests, tears and fears but I hope you know by lurking that you can still live well with stage IV. And I realize nothing we say can make it better but we are here always.
FYI, the brain MRI is easy, it sounds like a mix of sci-fi move and a construction site.
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Oh Moomala and Candy, hang in there ladies. Sometimes we don’t realise until we start to feel better just how crap we really were feeling, until someone reminds us just how easy it is to end up in hospital or dealing with the whole bloody insurance thing.
Aaah chin hairs, Runor you’ve started something. This is a constant battle ....WTF how come I had none yesterday and now there’s about 6 monsters? Def a tweezer lady me.Oh and my DH is also one who would take the piss!
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Runor, loved the telling of the rogue chin hair. So funny. When all my hair was gone during A/C chemo, it was my chin hairs that returned first. So not fair. They are like the weeds in our gardens, growing when plants won’t. Still to this day, my eyebrow and eye lashes are not as they used to be.... but dumb chin hairs always grow back
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Dodgersgirl, it's awful that you're here but you have joined a pretty powerful mix of people. As much as any of us can support each other with a keyboard as our means to reach out, you will be supported.
Mara, I am a pretty hairy unit by nature. Tamoxifen and age seem to have upped the game to an alarming level. I remember way back when I first met Hub and he was trying to grow this pitiful, sparse moustache. At 18 my moustache way outpaced his! I used to bleach it but then I'd have this olive toned skin and an upper lip of spectacular golden fuzz. Not good. So I plucked the worst of it and ignored the rest.
Now that I've entered the time of my life where I sprout chin hairs like a Chia Pet (and my moustache) I have to up my game. So I watched a few videos on how to do facial threading. Easy peasy. Wrap some thread around your fingers, twist it like thus and so, zip it along your face but start on your cheek where it looks like you have no hair, you know, to practice and HOLYMOTHEROFCATFISH you never know how many hairs you have on your face until you start yanking them little suckers out. If you have incontinence issues, this will make you pee your pants for sure. It hurts so bad! I am really bad at it, I do not have my technique figured out. But I do have to say, with my eyes watering, nose running and as I gasp for breath, this has done the best job of ridding me of hair of anything I've tried. No bleach that makes me glow. No Nair that eats my skin. No hot wax that is too hot and burns. No razor. A piece of thread and honest to god it rips those suckers out and leaves you begging for mercy. But it works!
Booboo, if you have friends who will rescue you from your unseen face hairs, those are true frineds indeed!
Moomala, I hope you get out of the hospital soon and get some real food!
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omg there she goes again. Lmfao! Oh dear me. You’re so damn funny. Lmao
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