My Husband, My Life, My Love, My Family, My Cancer
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runor - good news! Celebrate! I had adenomyosis and was not taking tamoxifen so it happens for various reasons. It can be a pita but menopause is the cure.
I had my CT yesterday and they couldn't access my port. Tried twice and missed so they used a vein for the contrast. I had swelling around the port yesterday but it's better today. I just has the port accessed on Thurs for chemo so it's patent. So that was weird and uncomfortable.
Trying to stay on top of pain better this chemo cycle. So far it's been manageable. Mandatory naps tho lol
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Candy - thank you for being such a good accountant of what's going on.
Moth - I had heard of endometriosis but never adenomyosis. That was new to me. My research says that menopause is the cure, as you say. According to my most recent blood work I am indeed a menopausal woman. My adenomyosis should be a non-event, yet there I was, bleeding like a stuck pig (then, not now, no bleeding since the biblical bleed March 27). It appears that tamoxifen use can cause adenomyosis to rear its ugly head and cause bleeding in postmeno women. But now that I look into this condition I am pretty darn convinced that I had it for years, decades. My periods have always been utterly horrendous and in the last few years before breast cancer, they had controlled my life. The bleeding was so intense, so flooding, of such great volume, that in desperation I made myself cotton, washable period pads. They had quilted bamboo or terry cloth inside them. I would place one of these pads on top of my store maxi pad because cotton grabs liquid much faster than paper or plastic topped pads. The presence of the fabric would grab the flood, prevent bleed over, allowing me time to duck waddle to a bathroom to deal with the crisis. I actually started making and selling these washable cotton pads. Now that I drip pee all the time, I wear washable pantiliners that I have made. If I wear a paper or plastic topped store liner everyday, it's not long before I have a nasty rash. The breathable cotton helps things not get wet, mucky by containing some air and also I think reduces some of that nasty odour that develops. I know, too much information. But I had these horrendous periods and no doctor ever thought to even do an ultrasound to see what was going on. They all shrugged and sent me on my way. Pisses me off that I only learn about this stuff when shit is going sideways. How did you learn that you had adenomyosis and did you do anything to treat it? Also, naps should be mandatory!
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runor .. i guess I just have a really awesome GP. I had very long periods, like weeks. More periods than non periods in a month. My GP sent me for ultrasound and an MRI when I reported it. I had both promptly, got a dx and was given option for referral to gyne or to wait it out while watching my bloodwork for anemia. Later was dx with breast ca & chemo put me in menopause. Had last period just before starting adriamycin. So that was the end of that.
Today I'm irritated that someone keeps bringing me stuff I don't want. They really really should know what I want, and nope, I do not want to discuss it with them because I'm pissed they're so clued out. But it chafes my ass.
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moth: I have never used my port for contrast stuff. I go to Life Labs since it is two blocks from where I live and I can get it done a day or so before infusion. They can't do bloodwork draws from my port.
What do people keep bringing you? ;-)
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Weird nuts. And houseplants.
Only RNs can access ports here. I go to hospital labs for bloodwork. Used to have to when I was on clinical trial and now I just do it because I don't like Lifelabs. For the CT Fraser health has policy that if you have a port they're supposed to use it. They won't book me for scans at facilities or times that an RN isn't available to access it. First time I had a problem with it.
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moth: weird nuts? I live a block from Ayoub's which is very bad for me since I love all nuts. They roast their own and if you go in when they are roasting the scent is sooo good. Houseplants? Do they think you need something to take of, as if you don't have yourself to look after. BCCA in Vancouver does my PET and they don't use the port. I am not a fan of Life Labs but they are so convenient and the choice for me was going over the bridge a few days apart or getting the blood work drawn same day as my infusion, adding to the time spent there.
You posted a few times about wanting acreage and a pony. I wanted to have goats and maybe a donkey. I seem to be attracted to animals that others think are somewhat "inferior." I am small enough and not very heavy. I could ride my donkey. But acreage would put me too far out of town and I do prefer living in town. The older I get the less I want to live somewhere that realtors call car dependent.
Menopause as a cure? I guess there has to be an upside to all the sweating, flushing, peeing.......
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runor: I am so happy and relieved for you. PHEW. Getting good news can be unsettling too. You get so wound up and then - poof - it is kind of hard to let go and relax. I am sure the ladies on this thread are all cheering. I have never heard of that condition either. There is always something to learn!! Doing a Happy Dance for you.
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omg lol what are the odds? It is Ayoub's 😅😅 I'm just not a fan of their stuff and much isn't labelled and some isn't vegan. I like plain nuts, esp hazelnut and Brazil but these are just not my thing. and i know they're not cheap.
Developers & land brokers are sniffing our block. Apparently might be getting decent offers? Maybe I'll get acreage after all lol
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Runor, such good news! It's hard to trust the good stuff sometimes when we are expecting the worst. I'm so happy for you.
Booboo1 and Candy - glad you both are on the mend.
I continue to hold you all in my prayers at night.
Still having some low counts. Nothing major but enough to have weekly draws for a few weeks. My MO seemed concerned at my last appointment that I am still having so much pain. I've been off work for a month now on a leave due to weakness and fatigue and significant pain in my legs. She ordered a PET scan just to make sure we aren't missing anything. I have some ongoing pain in my left rib cage so I think doing the PET isn't a bad call. Date to be determined pending insurance authorization. For the moment I just do what I can do. I'm walking as much as I can tolerate and got a few tomatoes planted in the garden.
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moth: Ayoub's has those as well but I like the cashews that are dusted with rosemary. And the lime and black pepper nuts. No, they aren't cheap. My Dh likes their dried beets. They really taste like beets (ugh, one veg I am not keen on) I would think their roasting oils are vegan.
Can I come and pet your pony when you get your land?
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Hi ladies, I had an interesting visit today, it was a nurse housecall check up, done annually by my United Medicare Advantage plan. After a quick introduction, she whipped out her scale to get my weight (I assume this was when she began her assumptions). She was nice but seemed a bit surprised when my BP was literally 120/80 and my A1C was a perfectly normal 4.9. After reading the A1C I heard a quiet but distinct “huh?” Yet another healthcare worker thinking that because fat, I certainly must have other issues.
Anyway, nothing new to report other than gamma knife brain radiation is scheduled for Friday morning, not how’d I’d choose to spend the morning but at least I get a free breakfast, lol
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Moth, your post about nuts and houseplants made me giggle! It seems rather strange to give someone either one unless you knew their favorite or if plants were a hobby.
Hope everyone is recovering from procedures nicely and I'm ready for pocket duty again this week for all who need it.
I have a telehealth appt. tomorrow and then labs and Fasoldex on Tues. Tonight after dinner I realized that somehow during dinner I chipped one of my front teeth! How do you chip a tooth eating a lettuce salad and lasagna. I have ONJ so I have to be very careful with dental work and I have no idea how this will be fixed; it's a big, jagged chip
Mel, thanks for remembering me; I know I don't post often but I am always following along and trying to keep up with everyone.
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Mae, my oncologist is now aware of my attitude toward my weight which is that I do take it easy on a lot of things but as long as I can walk the long distances and I fit in my bigger clothes, weight loss is not my first priority. My heart is healthy, walking is an effort. I did 14000 steps between two walks this morning, walking round the grocery store for stuff and after dinner at DB, went with DB and SIL and their great pyrenees. It was more challenging due to hills but I managed, only stopped us once for a less than a minute rest to gather my breath. My SIL kept asking if I was OK because you can hear the exertion, not shortness of breath, just the effort. I said I was just fine. We had hotdogs for supper, very good, he put out all the fixings and really enjoyed myself. Nice to see both my nephews as well. Glad they are in my bubble.
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Lee~ I am soooo sorry about your tooth my goodness. I hope it’s a quick fix for you. We always have the pesky side effects of treatment to worry about.
Mae ~ you showed her.
BooBoo ~ hope you’re healing nicely
Moth~ developers sniffing around means bulk land sell. That can be interesting I’d given the right circumstances! I hope it is for you.
Elderberry~waving hello to you.
Sondra~ hello to you also
Emac~ good to see you here. Always.
Runor~ still smiling.
Lynne50’s~ hello sweet friend. Always a pleasure to see you here. From the very beginning
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Well, woke up feeling super exhausted and off balance. Just really unwell, almost feel like something in m y chest. Decided to walk for half an hour after taking advil and tylenol. Not hellping yet, going to hit my bed and see if that helps. The walk did not even help. Feel like my head is stuffed with something. Hopefully this is just a one day thing. Not good at feeling ill like this. I slept well after yesterday so it is not my sleep making me feel this way.. Only plus side was that I still managed to walk half an hour without any stumbles or falls.I just thought the walk would make me feel better which it did not.
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Bummer Mara. I hope it’s a short-lived thing today.
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Mara,
I don't mean to be alarmist but from your symptoms it sounds like it could possibly be Covid. I hope you can stay inside and rest until you are feeling better. I hope you feel better soon but if you continue to feel sick, please call your doctor. Take care.
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Three things are on my mind this morning:
1. Mae: do you have to wear a helmet or other head gear with the gamma knife radiation? Do they lock down your head so you can’t move? (I know nothing about it, so planning to look it up too.) I don’t honestly think I could do it if the head is immobilized. I have such bad anxiety with any procedure that restricts movement. I can do PET scans because the one my facility has is very open.
2. Runor: what is the origin of your name? I have always wondered.
3. Emac: when were you able to ditch the walker? I am 6 days post-op, and still feel very much attached to the walker.
Hope everyone is mendingwell and has a good week.
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Mara, I hope the advil, Tylenol and rest help.
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Mae- You showed her with your great BP and A1C. This got me when you said "Nothing new to report other than gamma knife brain radiation"--- good grief what the life of a MBCer is like. We are tough women!!!!
Mara- Hope you get to feeling better soon.
Lee- Sorry about your tooth and the ONJ. Something else to have to deal with.
Well, I think I have a kidney stone. I have had them before, but not for 3 years. Sigh....
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Candy, thank you. I think the tylenol and advil throughout the day will help. I did lie down, not much rest due to kitty yowling outside the door but it helped a little. I am going to keep walking if able after breakfast since if I stay home, I will just tell myself I am sick. Doing some laundry first.
I am also sorry to hear you have a kidney stone. We are strong women but still. Life could give us a break.
Lee I am sorry about the oral issues you are dealing with too and ONJ, that sounds like a lot to deal with.
Mae, you definitely are one strong woman, would love to tap into some of that.
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Laurie, your head may be immobilized using a mesh mask locked into place or a helmet looking thing screwed into your head. It is important that the head is not able to move. I did an MRI while wearing a mesh mask. I still fell asleep during the MRI. If a person is really scared, an antianxiety med can be given for a person to relax.
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Doing OK over here pain wise, just tired. I got up and showered and took a 15 min walk around the block ok, but then just had to have a nap. Definitely better than yesterday. Between the GA and the long wait time and fasting I think it has just tired me out.
Boo, glad to hear you are up and rollivating! Walking is the best medicine, even just a few minutes a day!
Mara, take care of yourself.
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checking in on everyone. Sounds like some challenges are going on for us all. Some physical, some emotionally or family related. Or both. I just want to say. We deal with a lot of things. Let’s promise not to be too hard on ourselves. Pocket duty for whoever and whatever is needed!
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Thanks Sondra, something has me wondering if I am just tired out from yesterday. Did a lot more than usual. I will walk and lie down as needed but getting breakfast first. I am not surprised after the day you had that you would be super exhausted either.
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Mara,
Take care, my friend. What you said earlier really hit me. “Life could give us a break.” Boy, is that true. We bounce from feeling our highs from “stable results” to lows with too many to mention. Some days I feel tough, but not today. Feeling frustrated that I can’t shower easily, can’t walk to the refrigerator and pickup something on my own. I am just not a person that likes to have things done for me. My DH has been amazing through this whole surgery, both pre- and post-op. He couldn’t be a better caretaker. It’s amazing to me how we almost ended things back in December, and to see us now you’d never believe we are the same couple.
I need to find some gratefulness. It’s usually not a problem for me to find. But today....well....I’ll just have to chalk it up to the healing blues!
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lee - sorry to hear about your tooth. Ugh who needs this? Hope it gets fixed with minimal pain and hassle.
Mara - take it easy today. I hope it's just fatigue catching up to you
Mae - I missed that you needed gamma knife. Good luck for that procedure!
Sondra - I hope your recovery continues smoothly. Those first groggy days can be rough.
Booboo - times crossed for continued improvement to mobility!
I Had an ok day yesterday - fatigued but did 2 walks and did not need hydromorphone. I'm still trying to see how i feel today. Weird how sometimes I just can't tell if I'm ok or not at first lol
Hugs
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booboo, yes, unfortunately I do need the metal head frame again and it is literally bolted to the table but honestly the worst part for me is the numbing injections. I’m very needle phobic and seeing the techs come at me with needles to inject into my forehead is incredibly stressful, they do provide Ativan but it’s still bad. The screws for the frame secure to your skull and do pierce the skin, not fun at all but I know what to expect now, do I can handle it. (Pic below)
My secret to living a good life despite all the various troubles is very simple, low expectations. It may sound sad or like I’m settling but really I’ve just always been empathetic and observant, seeing others struggle has taught me that things could always be worse and that perspective has made me see the silver linings more than the clouds.
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Cross posted:
Hi, all,
Quick check in to let you all know that I'm okay. As you may know, they found issues with both my L and R femurs - did a complete hip replacement on 4.19, did a rod and pins on 4.24, and I left Hopkins on Friday 4.30. All of that time I was IN BED, and I basically lost all functionality. They sent me to a subacute placement (basically a nursing home with an hr a day of PT/OT) on Friday (BAD idea) and I cried all day long. Next day got into an acute rehab place and that's where I am right now -- started intensive therapy today. Hopeful that we will get good results from working hard. Not on any cancer treatment right now until my wounds heal and then we'll revisit.
Thanks for all the notes from everyone. I really appreciate it.
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Bevjen, thanks for the update. I saw a post about the loss of functionality the other day and was alarmed but I’m happy to see you check in and hope for a great and speedy recovery. Sending hugs!
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