My Husband, My Life, My Love, My Family, My Cancer
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I am feeling better since nothing was found in my head CT, lung xray or bloodwork. Whatever is causing this has no physical cause that can be found. BP is fine, was not low or anything. All I can do is move beyond what has happened and if I feel funny again, just lay down if at home or sit with my head between my legs until it passes. It does not come on during a walk, so I should be fairly safe when I go out. The fall I can understand due to the shock and pain when I landed, I was overheated when I passed out at christmas and yesterday I had just done a vigorous walk. I will mention it to MO and just have to keep plugging on. No easy answers to be had.
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Mara- Good that all scans and blood work ok, but also frustrating that you don't know what is causing it. Talk to MO about it. Take care.
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I will, thank you Candy.
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Sometimes unexplained fainting/dizziness etc is due to the vagus nerve, which goes right up and down the spinal column from butt to brain, connecting everything. This nerve is what's responsible for the gut/emotion connections (butterflies in tummy from fear, etc). I was getting an IV, fell asleep, and managed to bend my arm and drive the needle deep into my arm (OUCH!!!) -- I immediately fainted, due to a ventral-vagal reaction (?sp) of the vagus nerve, and then threw up... I'm mentioning it in case it might be relevant.
On another note: I want to express my gratitude to all of you on this thread for letting those of us not in stage IV participate, and helping expose us to the unique aspects of stage IV cancer. I am out of state right now, helping a dear friend with stage IV lung cancer thru a chemo, and it has been very helpful to have more insight into this experience she is going through, in order to be a better helper and friend.... Thanks to this thread and "What you wish your friends knew," I'm much more aware of feelings and fears that might be unspoken. Very grateful to everyone for sharing with so much honesty, and teaching all of us how to be better supporters of people we love.
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Micmel, sorry you are feeling so punky. I know what yu mean about the creaky body! When i get up off a chair the first few steps look like I'm going to fall over. Hobble, hobble, stumble, stagger, ah there we go, the body is getting on board now.... Getting off the sofa has become a two man job!
Mara, you can sit with your head between your knees?! Good god woman, are you some kind of yoga expert? If I tried to stick my head between my knees the fire department and the jaws of life would have to attend to get me unstuck! Things I used to do with ease, like bend over to vacuum under the fridge, have become grunting, groaning challenges. When did my body seize up like this? I blame the tamoxifen. All my joints have suddenly quit working. This happened too fast and too severely to be old age. (says me as I lounge on the couch and wonder what it must be like to exercise - LAZY!)
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I have to say, some days I feel half decent. Today is not one of those days. I am achey on both hips. My ribs ache, my stomach has that something is gnawing at my cells feeling. Odd pain that can’t be explained. Weird pressure points that ache like mad. Just over all feeling crappy. Never do both of my hips hurt. Never do both my ribs ache. Like wtf ? I’m sick of this entire cancer gig. I didn’t ask for it. No one did. Runor, I feel 90 I am freaking 49 to be 50 in May! I truly feel aged beyond a mere number. I feel like my joints are sand paper begging for a drop of oil like the Tinman in the wizard of Oz. The arches of my feet hurt. Aches across my back. I feel like I have been hit and left for road speed bumps. Haven’t had a shit day like this in a while. Not a sickness shit. A cancer feeling sick. Movement = nausea = pain. How long can we do this? My tummy is also bothering me! Achey! Yuck!!!!!!!
Mae~ I’m sorry to whine. I feel like ass!
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Mel dear,
I totally understand how you feel...
what works for me—when my joints feel like sand paper begging for a drop of oil like the Tinman in the wizard of Oz— is magnesium citrate and omega 3 fatty acids. 400mg of magnesium and 3 capsules of fish oil in the morning with breakfast, and another capsule of magnesium at Night with dinner and 500mg calcium citrate if the aches persist...
I hope these supplements work as well for you!
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Mae, completely justified and appropriate “pity party" you had at your appointment. If that doctor had only said “Happy F-ing Birthday" instead of simply “Happy Birthday, it would have made all the difference!
Mara, my goodness, there is nothing whiny with you. Fainting out on your walk, and then feeling the way you did in your room, that is scary. Especially as it threatens your wonderful habit of walking for your physical and mental health. I hope your docs can figure this out quickly and that it is something simple and easily fixable.
Micmel, I am waving my hand for pocket duty. This will be my first pocket experience. I will be there for you as you stare up at the white squares. I will bring dark chocolate chips and dried cherries mixed together.
Those fluids perked me up and now I am eating like a horse to make up for nearly starving. The time leading up to the trial, and especially the past ten days since starting the trial, and going to the ER on day eight, have been so stressful. I feel that nobody was properly looking out for me. I still have not heard from my onc to discuss my next steps; I don't know why. Right now, I wish I could go out and have a good time and forget about it all, but I can't even remember how to do that. I hear that people do, though. Right now in my city it must be happening. But I don't know what to do with myself. I am spent.
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Checking in. No more puking, neuro rads onc put me on low dose steroids to relieve the radiation SE and my brain MRI came back good, no new lesions, no bleeding and no swelling. The blood thinner shots suck but DH is a gentle nurse. I got myself Britbox since I’m a huge British mystery fan, so that’s kept me occupied. I tried a PBJ sandwich today but the peanut butter was too sticky, oh well, not ready for that yet.
Anyway, thinking of you all 😀👋
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Shetland, if I could, I would take you out to any movie you might want to see. Maybe a good comedy for a laugh to take our minds off our problems. Glad to hear that you are feeling hungry again and hope you hear from MO soon to find out what is next.
Mae, glad they have stopped the vomiting and given steroids to help with brain SE. Also glad to hear no new lesions or swelling in the MRI. Enjoy your mysteries.
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Morning to all my virtual friends out there.
Mel- Yesterday was one of those days for me. I went and got my port flushed and my Lupron shot yesterday morning. Ran some errands. Then yesterday afternoon comes the fatigue. Laid down for a while and then the chills. Usually I am hot with the hot flashes, so the chills is not my norm. I chilled for 3-4 hours AND felt fatigued. Plus all the other "normal" stiffness, tin-man aches. Felt cruddy. Feeling back to my norm this morning.
Shetland- Glad to hear you are doing better. Hugs.
Mae- Hoping better days are in your future. Hugs.
Quiet Saturday for me. TV and reading book and of course checking in here. Shetland- People are out there partying??? What??? A friend texted me that he has a company shindig tonight. Woohoo for him. Would be nice to feel like doing things without the aches and pains and fatigue. Would be nice to feel like a normal 49 year old - my age and his.
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Candy~I am also 49, I would love even the thought of going to some shindig. I’d have to pump myself full of adderall and hope for the best recovery the next day. I do feel a little better this morning But my body is freaking tired. No other way to put it. I slept over 10 hours. I should feel awake. NOT. Feel like I’m Counting down The hours till napTime. Cancer just plain pisses me off. I hope you’re feeling better as well today..
Mae ~ thinking of you for sure. Hope you’re feeling closer everyday to yourself So much! We need our correspondent back in the field. 🌹 hope DH is ok also, caregiving is hard work. My DH get so exhausted. I just don’t want to be sick anymore. It also gets exhausting.
With scans coming up, my nerves are starting to Fray. It’s just plain torture every single day. Some days it’s in the back of my Mind, others, it’s just banging down on my head. I worry everyday, what is going on inside this body that has rejected health and replaced a serious disease that will take me decades earlier than I ever imagined.
Shetland~ ♥️🌹 thinking of you too hoping you’re feeling better. Rest up on this Saturday! I have to find some binge worthy material, I’m cruising through everything.
Much love to everyone.
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Progress Mae... brilliant however small.
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Well, grabbed the walking bull by the horns. Went out twice, once to the grocery store. Sat around for a bit after, had a nap. Then I decided to walk to the burger joint that I was walking to last Sunday when I fell and then fainted. Decided to get rid of the fear of falling by tackling it head on. I am still doing a bit of a march with the right foot which is the one that gets caught in gap between the sidewalk. When I lift it a bit exaggerated, I am far less likely to fall as the right foot has always been the culprit. I actually got dinner and ate at the restaurant. Nice to have fresh food, the walk home was nice too. It was cold but nice and sunny. Going to keep practicing the new way of walking until I am more used to it. I know they say look completely ahead when walking but I still keep checking for those side walk gaps. Did not even come close to falling.
Candy, we are the same age. Sometimes I feel younger than my age, other times, I feel like a decrepit bag of bones as well. Today, though it was tiring walking the new way, takes more effort I think and more steps, after I got home, I felt good. Got to keep this up.
Mel, I am sorry scans are causing the damn anxiety that can go along with it. In your pocket anytime, not just when you are at your appointment.
Now I am going to have a chocolate bar. I deserve one.
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had my first bone scan plus CT scan this week. MO called to tell me results were stable with some areas shrinking. That is the kind of news I needed after spending that week in the hospital.
Like Micmel writes, I am sooo tired right now. I just want to nap in my recliner all day. But I am making myself get out of the chair and get something done, even if they are small tasks.
Mara— your posts continue to give me hope that I can get back to doing things I need to. Hope you avoid anymore falls.
Illimae— sounds like you have turned the corner. I hope you continue to move forward. Happy belated birthday.. hope you can soon have that birthday steak and garlic bread. Keeping you in my thoughts.
Micmel— again, thanks for providing such a loving living room. Sure keeps me from feeling alone on this cancer crap.
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Dodgersgirl, glad your scan was stable. Stable and shrinking are definitely what we like to hear. I am sure you will get back your strength as the side effects wear off.
I do semi march now. Helps me lift my foot. Not as likely to trip on the gap between sidewalk blocks. I am actually getting used to the semi march. When I get tired of doing it, I swap to the side of the road on less busy streets. Since no gaps, no need to exaggerate lifting my legs. I got less tired too. May make myself walk to the store daily for a chocolate bar or something to keep it up.
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Morning to all my friends out there. You don't know how much you mean to me. This cancer crap is lonely.
So Me, Mel, and Mara all about the same age, 49 or so. Too young for cancer. I think Philly is around 40 and I think Nicole is young too. I am just feeling the blues today. I want to be my age, but not sick. Working, going to 'shindigs', living life. Not doctors, scans, meds, and an early grave.
I am going to church in a bit. Hoping that will lift me up. But then home and nothing planned for the day. My friends and family are busy with their own lives. I texted a friend yesterday, no response. I know she is busy.
Mel- In your pocket for the scans. Crappy we have to live from scan to scan.
Mara- I am glad you are enjoying your outings and that you have not let your fear ruin that for you. Maybe I will walk on my treadmill this afternoon.
DodgersGirl- I posted congrats to you on another thread, but congrats again. Stable scans deserve many congrats.
I will be checking in here later today. See if anyone is around to say Hi.
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Mae,
So happy to hear you are coming along. It’s slow going, and that’s ok...I just know that you will have your travel adventures again before too long.
I am slowly getting over the flu. I never realized how something like the flu can affect me for so long given my compromised immune system. I did not go to my scheduled treatment this week. I was not well enough to go. I see my MO on Tuesday, so we’ll see what she wants me to do (continue treatment or wait another week). I just want to get out of my house. I’ve been stuck inside for almost 10 days now. But I can’t take a chance on picking up any other airborne viruses out there.
Mel, count me in for pocket duty. You know I am always cheering you on.
Dodgers, so glad to hear you are home from the hospital. Praying you recover completely, and are back to doing the things you love.
Waving hi to Mara, Candy, Tanya, Shetland, Karen, Runor, and everyone else.
Happy Sunday!
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Candy, you sound so down. Rightly so. It's hard to find that updraft to lift you up when the world is a fly swatter whacking you back down. I have no words to help. Like everyone else who reads here I offer my hope. Hope that something good will find its way to you. Something small and simple and quiet and warm. Something so silent that maybe you don't even notice it at first. But maybe after it has slipped by you will say, hey, that was a good moment. Good moments. Hard to see but sometimes they leave a sweet scent floating behind. I hope that for you and for everyone who sees only gray and hurt and tired in this daily journey.
I read here all the time and even though I don't mention everyone by name, please know that everything that is posted is read with significant attendance. Each of you has a voice and look in my mind (some helped by actual pictures of you!) and I imagine you making your post then turning back to your life and getting through the day. I feel that here I am part of a cloud of hovering earth angels that floats along with every one of you. Carrying you in the collective heart and mind. I think that's the most we can do for each other, care. Attend. Listen. Hope. Cry or cheer. You take time out of your day to write, that is your offering. Others take time to read. That is their offering. We all bring what we can to this table in an exchange that is as real as we can make it. The value, here in Micmel's large and generous living room, cannot be overstated. The perking coffee, the scented candles, the comfy sofas or pile of pillows on the floor, the laughter, the food, the talking. Home.
I hope today we all find a little slice of exactly what we need. Hugs.
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BooBoo1– the flu... yuck. May your recovery be FAST.
Candy-678: hello! Thanks for the congrats. My MO had warned me that I was likely to see progression since my treatments were paused for rads. So double happy to learn that wasn’t the case. Speaking of church, I connected with a handful of Christian nurses who shared their testimonies and prayers while in the hospital. I knew they were put in my path for a reason and I was on their path for a reason. Very uplifting experience.
Micmel— will report for pocket duty for your next scans. Hoping tests go quickly and results continue to be NEAD.
ShetlandPony— May you get your strength back soon. So sorry your trial is kicking your butt. I have followed your posts for a while now and always impressed with your knowledge and have learned so much from you. Sending you positive thoughts that you experience good events now.
Illimae- keeping you in my thoughts. Glad the results of brain MRI was so positive. May you continue to improve each day. As Micmel talked about, looking forward to reading about future travels. I love to travel (which is not something I can do right now) so truly enjoy traveling “with” you via photos and your posts. And love the new photo.
Frisky— waving hello. Always learn something from your posts. What a smart lady
Mara51506– I think you posted a photo recently on a different thread. You are quite lovely.
And to everyone else, thinking of you and hoping you are enjoying the weekeb
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Hi - I'm new to this subforum. I'm still in the can't quite believe all this is happening phase.
A bit about me:
I was dx'd originally w/ stage 1 while doing my pre-requisites to apply for bachelor of nursing admission. I finished those exams between breast surgery and chemo, did chemo, got admitted to a great school and started while I was still finishing rads. It's an accelerated program and I'm exactly 1/2 way, and now this. It happened all during reading break and now on Monday everyone is going back but I'm not and I'm so sad. I was a straight A student, had excellent clinical reviews, and I just LOVED it all.I'm married since 1991. Dh and I actually went to the same high school but it was a huge school (graduating class of over a 1000 & we didn't really know each other. We started dating in 1986 while at university. I got a political science degree and he's a geologist. We have 2 kids, 25yo dd (she's a newly graduated BSN RN), and 21 yo ds (college student). As real estate prices here are super crazy, they live with us. We're a super tight knit family. We homeschooled, travelled together, spend so much time together.
The other love of my life is dogs. I used to have 3 but now am down to 1 and it's another thing I'm grieving. I had a plan for all the dogs I wanted to get for various time periods & what I thought I'd be able to handle as I aged. I used to foster and volunteer for a rescue. I dabble in rally-o and agility but haven't been competing much.
It's hard to wrap my head around losing all this. So many things not yet done.
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Moth~Welcome to our second home. I’m sorry you have to be here with us, but we are a loving sweet family here and we genuinely care. I am shocked still even after 4 years of this cancer dance. I don’t truly think I’ll ever accept it fully. I am so sorry for the things you have lost due to this awful disease. I don’t think it’s fair for any of us. I miss so much from my old self. It brings me to my knees. I was just ugly crying on DH’s shoulders last night, gutted with fear because my scans are coming. I am filled with fear and that’s that! Nothing I can do except move my feet and drink the hand lotion for the scan. I hate cancer for us all. So very much. I am sending you hugs. To all of you
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Candy, I am sorry you are having the blues. I can definitely empathize and still sometimes have them too. I struggle to maintain a better attitude, even though I am not going through major issues physically. I just keep walking. I think listening to good music while treadmill walking is very cathartic. If you can take a walk outside, even just around your block is even better. You come home feeling better both physically and mentally. Again, I like music, though just in one ear to hear traffic etc. It can feel really really good.
Dodgersgirl, thank you for the complement. That picture was with a lot of makeup and eyebrows I drew on. I really liked that particular wig I was wearing as well. It was inexpensive on amazon and wore that one for many months. If it wore out, I just replaced it. I do like that picture, one of the few I like how I look.
Booboo, hope the flu leaves you soon, that is rough. Rest easy my friend.
Moth welcome to the living room here, pull up a chair as Mel would say. I see this is a new diagnosis for you. I am sorry you are dealing with this. Keep talking to us for support as we can understand a lot of the side effects, emotional effects that non cancer or caregivers might not understand. I encourage you to keep active to help with some of the stress and bring someone to appointments if they are giving a lot of information. I personally found there was so much, I could not follow it all the time. Know that things will settle down given time. I have been here 5 years, sometimes struggling, sometimes not so much. I also have different support systems. I have my people here, talk about cancer mostly at the cancer clinic with doctors and nurses. I try to keep my life as normal as possible. Walking has always helped me, especially of brain radiation. I will not say fear of the unknown will not creep in, but life does continue and it becomes a little more in the background. Do as many normal things you can that you enjoy. Sometimes just checking out of the cancer, even for a few hours can be good. Hugs to you. Others will chime in for sure.
Mae, hope things are still improving as well.
Shetland, hope you are regaining your strength as well.
I am about to go for a walk, it is nice and sunny and milder here. Just have to put on some hair and have lunch. I may walk up to the grocery store to buy one chocolate bar. I bought 4 of them yesterday but with all the walking, I got really hungry and ate them all throughout the evening. Pretty bad, but I did really enjoy them.
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Moth welcome. Sorry cancer put the brakes on your studies. I hope your treatment is gentle and effective. What are you taking? Mel and I are on ibrance but from what I glean from the posts is that we live with cancer and SE’s and try to be resilient so we can do the best we can. Some setbacks and emotional roller coaster for sure but a lot of support from those of us who have been through or are living with cancer.
Mae hope you’re eating whatever you want right now!
Mel of course I’m in your pocket. The emotions you can fight and they come sneaking back. Thanks for Dh and good friends and family and of course the living room.
Candy Dodgers Mara Mae and Philly I always think of you young women living through the prime of life and battling to have a semblance of normal. I do understand. I was diagnosed at 46 stage III. I thought it was a death sentence. Scans were then And now an emotional horror show. I’m 62 now and have progressed to stage 4. I have a bunch to be grateful for and I pray you all stay as healthy and resilient for years and years to come.
Booboo thanks for checking in. I breathed a sigh of relief when I saw your post. We shall have to have another lunch date soon.
Runor I love your encouraging post. You are an excellent writer and you capture some poignant musings of us all.
Waving hello Shetland Frisky Karen santabarbarian and anyone else I missed. It’s after 1:00 so I guess I’ll get dressed.
Tanya
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Welcome Moth, I know the stage IV thing is very new to you and it’s hard, we get it. I just want to say that nothing has to be completely lost or over, you’ll likely find that you can still enjoy many things, perhaps postponed or adjusted once you settle in to this new life.
Having the Sunday night crowd over for Walking Dead, DH is making Beef Burgundy, I think/hope I’ll be able to enjoy some 🙂 Also, I booked our hotel for the next trip, Punk Rock Bowling in Vegas at the end of May. I have to be better my then, there’s so many restaurants I want to try.
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Thank you ladies for caring. I guess the blues just hit sometimes. The weekend. Others with plans. People talking spring and time change in a couple of weeks. Spring fever. Summer coming. My friends with health, jobs, living life. I am so thankful to God that I am stable. And I could be feeling much worse health wise. I just don't feel like the old healthy me--working full time, planning activities, staying busy. Anymore I get up from sitting slowly--creak, tin man like. And fizzle out early in the day, in bed by 9pm. Geesh. And planning a long evening out just sounds tiring!!!!
Church service was good. I am going to walk on treadmill this afternoon, listening to some music-real loud.
Boo- Hope you feel like your old self soon. 10 days stuck inside can drive one batty. I have not gotten sick this flu season, yet. I wore a mask to church today--everyone coughing. And scrubbed my hands when I got home.
Runor- Thank you for your beautiful words and your caring. I can picture Mel's Living Room-- how I wish it was a real, tangible place we could go to.
Moth- Welcome to Mel's Living Room. Sorry you find yourself here, but this is a good place for you to be. As Tanya asked, what is your treatment plan? Any questions you have, please ask. And come here anytime with your fears, anger, or anything else.
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Hey moth - glad you were able to find the Living Room and felt comfortable to come plop down and introduce yourself. We welcome all to share or not share, whatever they feel like.
Not much going on here - I went to the pool today and felt so good afterwards and I am over 24 hours on the painkillers, which I really take more for inflammation purposes. I did stop to get some Omega 3 tablets and Mg spray to start, oh, and a small packet of brazil nuts too. See if the fish pills (actually think they are made from algae) help out in the stiff joint department. I took one when I got home and I like to think its helping already
I made a big pot of red lentil and chorizo stew for dinner to help the iron numbers - got bloods/MO this week. And its tasty and cheap Made sure to split a side of garlic bread with Boy, and I thought of the garlic bread fans on this thread.Think Im going to start cutting down on the sugar and wheat in my diet because a) its way too much and b) we've moved past the critical phase requiring emotional eating and c) I want to see if it helps cut down on some of this inflammation in my back and pelvis.
I hope everyone has a good week - if you are ill to feel better, if you are sad to feel happier, and if you are truckin' to keep on going
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Well ladies. I walked on my treadmill today. Haven't been on it since Jan 1. I cranked up the music real loud. And thought " Cancer try and catch me".
Mara- You are our walker. How does this sound? I walked 1 mile in 38 minutes. Alternated between stroll (1 mile per hour) with fast walk (2 miles per hour) and even jogged (3 miles an hour) a few times. Wasn't pretty. Sweating and gasping for air. But I did it. I need to get myself in better condition.
Today cancer didn't win.
But I did doze off when sitting on the recliner a little later. Hahahaha.
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Candy,
You go girl! You don’t know how bad I need to get on a treadmill or just take a walk outside. I think I will be able to get out tomorrow....I sure hope so. But I will need to wear a mask too, Candy. I picked up the flu from going to the supermarket, so hubby is going to do that chore until I get my strength back. I am super nervous about the coronavirus. If I get that, I’ll be in the hospital for sure! Or it will finish me off. So I’m going to talk to my MO on Tuesday about ways to rebuild my immune system.
Anyway, Moth, so glad you found us. We share a whole lot here....nothing is off limits. The support is the best ever! I hope you’ll come in and stay awhile.
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Thanks for the welcome, everyone.
I don't actually have a firm treatment plan. What I have is a several options and we're not sure yet which will go ahead.
Plan A is a clinical trial which is slated to open here in March. Atezolizumab + Abraxane + a 3rd drug/placebo. This is part of the ongoing IMpassion trials. I still have to qualify for the trial & the trial has to actually open to enrollment soon. The MO is wary about waiting too long.Plan B is getting atezolizumab from the manufacturer, which depends on my tumors testing positive for PD-L1. Atezolizumab is available in Canada now but is not covered by our health plans so best options are to get it through trials or compassionate access from manufacturer but apparently they don't really want to give it out to non PD-L1 positive pts.
Plan C is just start chemo and give up on the immunotherapy but the MO really hopes we don't have to go that route.
Bone scan is getting done tomorrow. I've been on Prolia for just over a year & it's supposed to reduce risk of bone mets so I'm hoping for some good news there...
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