My Husband, My Life, My Love, My Family, My Cancer
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Thanks for the pocket duty everyone. The scan was fine though I had to wait a long time for the venous support team to put my IV in. I chanced an IV so that I would not have to wait for the team to de access my port. I think next time, I'll book the port access for my MRI on July 26 since the booked a port de access.
Walked there and back to the hospital. Ate some lunch at home and then decided to see if I could book my second vaccination even earlier and I was able to get an appointment for the shot at a nearby drugstore. Works better for me, did not want to be sick on my infusion day next week I will be fully vaccinated tomorrow which is much better than being done in September. I will feel even safer behind our masks. This Friday, Ontario will finally be open. Higher capacity shopping, indoor eating and such. I will probably visit my burger joint to have a burger inside. We will see. I won't be doing as much of the ordering out as I was but a treat once in a while is not a problem.
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Got a lab draw and Faslodex injection this morning. Not sure why that always wipes me out but it does for the first few hours afterward. We were watching the labs because my kidneys had taken a hit and my GFR and creatinine were trending in the wrong directions. Fortunately that seems to have reversed itself. Labs were normal with the expected abnormal WBC and ANC values. That was good news. I am not going to see my MO this month because she retired and so I will not meet the new one until the end of August. I have felt a little better off the Aromasin and all is stable as far as I know. I will find out if I have to do more imaging at the end of August but for the moment I'm cruising on stable and staying out of the heat.
Mae, that looks like a blast. I can't believe people would watch Jaws floating in the water. I couldn't do it! I don't even like going in the rivers here where the scariest fish is probably nothing more than a Salmon!
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Mel, I’m sorry it’s not much difference. Hopefully we can both get some sleep tonight. Hugs
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Count me in for pocket duty too but instead of candy, I’ll have veggies, since I’ve been putting too much weight back on. I’ve got an appointment Thursday with my PCP, I twisted my knee last week and it’s been popping and a little swollen, hoping it’s nothingserious and I can do the virtual 5k next week benefiting Florida manatees (it’s called Save the chubby mermaids, lol).
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I am so tired of feeling like the little Wounded bird with one broken wing. Bouncing and hopping thinking I could fly again if I just try hard enough. I think about all of the good things in my life. I love my home. I'm blessed to be able to have the time to rest when need be. I just feel voided. Like empty……I'm sick of being the one who feels like shit and doesn't have the energy to get up. Fatigue is like a huge grizzly bear hovering over you. I want to feel powerful again. I want to feel useful. Even stupid little things like cleaning a bathroom is a big deal for me. I am a fish caught in the net. Knowing that someday the water won't wash up quite as far and I'll be left gasping for air. I just wish they had a damn cure for us. Makes me so mad. 45 diagnosed. Here I am. 51 scared to flip the month on the calendar.
The other thing wearing on me is my son and his moving out quest. I don't want him to move if I'm honest. My DH is the driving force behind that. While I know. The intentions are the best they could be for his growth as A man. I just don't mind him being here. His room is a mess though that I don't like. So I feel both sides. It just grinds on me. I want him to be safe and happy. Sometimes I just get tired of living such a difficult life most times. I get tired of how it effects everyone around me. I just want to be able to do things like I used to. I don't know why this has even happened to us? So maddening…..
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Mel, sending you a great big hug. I really understand feeling like the wounded bird. I was diagnosed with stage IV at 41. I feel like at the time I had worked hard to get to what was supposed to be the crowning point of my career and ambitions. I had all these goals for my life that just got taken out at the knees with a cancer diagnoses. It's been hard to see my coworkers and friends fly and chase further dreams while I have struggled. I've been in a recover and redirect mode for two years now and I don't get it and yes, it is maddening. I don't understand life at all sometimes; it can be wonderful but also irrationally cruel.
I wish I had answers . On my low days I cry a lot and when I'm not crying I'm raging at the world for all it's injustices. I have my favorite blankets and go-to things that comfort me. I consider coffee my emotional support beverage. Bless those around me during those times because I'm sure I seem like I've lost my mind. If there has been any silver lining to this at all it's that I have a greater appreciation for joy and the happy times in life. They seem somehow sweeter when they do happen because I have known the darker corners of pain and sadness.
I think this thread has been an amazing help. All credit to you for starting it and to all of us here who keep it going. This truly feels like a group of people who would otherwise probably be completely disconnected were it not for our shared struggles. Knowing you all get it on a level that no one else would, had they not walked through this diagnoses, has been a light in an otherwise blinding storm. I have a huge respect for you all and feel connected to you even though we may never meet in person.
So I think this is a very verbose way of saying thank you. Because even though you stated you feel weak and like you aren't useful, you have created and bound together a group that has had an impact across several countries. Not just for the persons in this thread (all of us, even the lurkers), but you've made a lasting impact on the breastcancer.org community. I mean, this is a 729 page thread (to date) spanning just over four years! It's routinely on the most active threads list! That's a pretty mighty feat if you ask me. I wish I could reach through the screen and help fix the tangible things, I can't. I do hope you get some good sleep tonight and that this gives you some piece of mind and made you smile.
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Mel, I totally agree with emac. She said it beautifully. Thank you for this thread. I know this is just a little thing, but when I know I have to do something like clean or fold laundry, I put my headset on and listen to music while doing it. Somehow it makes me find the energy I need to get the crap done I don’t want to do. Just a thought.
I also understand about your son. My daughter lived with us until she was 25, and her room was a mess as well. She is married now and has my awesome grandbaby, and their house is spotless. Not fair. Anyway, i understand both your point and your husband’s point. If your son is open to finding a place of his own, that’s a huge step for him. I forgot how old you said he is. My daughter is 31, and she is the sweetest thing. If she comes for a visit and then goes home, she always knows she has to let me know she got there okay. Once a mom, always a mom. Hugs.
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thank you ladies for the sweet things you said about the thread. I do much wish it was a real place for us. Insomnia is hitting me again tonight. My son and this whole moving thing has me sick to my stomach with worry. I know he’s a man now, I don’t do well with change. My DH for 16 of the 18 years we have been together we’ve had two houses , one he would live in all week and then come up here with me for vacations and weekends. It was a hard thing for him. Now he’s moving up here with me in the same house. I am not used to everyday. Not used to worrying about having things a certain way. Things don’t bother me like that. It’s change. And it’s hard. I waited so long for this and now I’m scared that we’ll get sick of each other. I love my kids around. I like things the way they were . I hope that it’s just time I need to adjust. Life is hard enough with out stupid cancer. Just makes things shittier. Hope everyone is at least doing ok today. I had a good cry today. Sometimes I just gotta let it out. I miss my old life/person, life is beautiful but can also be so very cruel. I don’t know how humans live to be honest. It’s always something to deal with. Things cost so much money, people aren’t civil or kind anymore to each other. Pandemic, it goes on and on. When will things start to be better for us. I think we all deserve a huge break from being that hamster on the wheel.
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oh and I miss my dogs desperately. .
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Mel, I am sorry you are struggling so. Sometimes everything just gets to be too much and we need to let it out. The mind can definitely be a hamster wheel. Mine is certainly no difference and I know that can be a torturous thing. I am also sorry that your heart is still broken about your dogs. It is painful.
I had a pretty busy day today. I got rid of my cat's old litter box and set up a new one, that was a fair amount of physical work and lifting. I also went for my second shot as well so that was good. Just feeling tired and have a headache, but that is OK. Feel a bit safer now.
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Yay, Mara. So glad you were able to get your second shot. It was such a relief when I had them both. It felt safe to me as well.
Hope you can get some sleep, Mel. I struggle with insomnia. It messes with your mind and makes everything so much harder. It robs us of our resilience.
Thanks everyone for your outrage on my behalf about my invention, and Jeff Bezos. It still rankles sometimes (usually when I'm checking my bank balance) but mostly I try not to let it get to me. I joke that at least I can say I've had a conversation with the world's richest man. It's my "claim to fame", so to speak. 😏
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Joining the insomnia crew as I wait for my coffee to finish brewing. This morning it was cats barging in at 4 am demanding to be fed (hey, the sun and pigeons are up so that must mean food time, right?) and I couldn't get back to sleep after. And this letrozole generic is just so crap this month that I get really achy every few days and that can keep me up if I forget to take ibuprofen. Ah well -- nothing happening at work this week (summer in the UK, everything slows down from mid July) so if I need a nap later today to just catch up a little on sleep its no big deal. Weather is finally shifting to summer as its been cloudy and mid 60s for ages. So grim, and we had a tropical downpour essentially on Monday evening where a storm just parked over us for an hour and a half of rain and thunder. Brian May from Queen was complaining on the news about his basement flooding with "unsavoury black water" and a bunch of Tube stations flooded too.
Almost done with the needlepoint tapestry I started in March but.. I ran out of cream wool right at the end as I think they packed the wrong ratio - needed one more skein. Had to order wool on next day delivery, so my lovely DPD guy is arriving in an hour and a half. I should be able to finish it up today and then I can get my next project on the frame!
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photos please???
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Update: The blue heron chicks have left the nest and are exploring a neighbors driveway and lawn. Recent rain has likely stirred up bugs in the grass, so this is a great learning opportunity.
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that looks pretty awesome.
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oh I love herons; what adorable babies
hey everyone - popping in to say not much new with me. Been enjoying the weather and having some really good days. My parents came over for a coffee on our deck last weekend - first since our winter lockdowns. We're almost all double vaxed now - my son is getting his tomorrow. The rest of have been done for some time so we're feeling a bit safer. I've been puttering around the garden, tending the plants on the deck and playing games with Olive. Now that the crazy heat is over, it's my kind of weather. I like it mid 20s to mid 30s. I've been hanging out on the deck; read a couple thrillers in the deckchair by the fountain with a cold lemon water in hand.
I've been in a good place both mentally and physically. I'm going to add weights/resistance training to my workout. It's almost weird - apart from a bit of pain and decline in energy and endurance, I feel almost normal. How can I be sick & on IV chemo for >16 months when I don't feel that bad.. My MO returns next week from her sabbatical so I'm looking forward to hearing her assessment of my condition.
hugs everyone
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Moth, my onc often assesses my current condition thusly: "You look great!" She is the only person who gets to say that without my giving an eye roll.
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My onc tells me she thinks I will live for several more years at this rate. I like to hear it but take it with a grain of salt.
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Mae, such cute little babies! I love it!
Mara, grain of salt, or no, I'd take it from that source.
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Moth~ it is really great that you’re feeling so good. I’m thrilled to hear that. Gives me hope. Some days aren’t so bad…. Others. The pits. Keep on going girl!
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Good morning (evening) all….I made it to Maine. I have been hesitating to post because the weather here is so perfect (rainy and almost cold), and I didn’t want to sound cocky since our PNW friends have not had it easy. Sondra, you probably think I lost my marbles, but I live in FL, and it’s been consistently in the 90s for awhile now. And oh the humidity…anyway, I am enjoying myself very much. My niece and her 3 month old baby is here with us, and what a wonderful time I am having spoiling him (Alexander). Have not yet had any lobster (Mel), but will certainly have some before we leave on Saturday.
I hope you are all doing ok…I had a little episode trying to get to my plane in Tampa….had a complete panic attack that I wasn’t going to make it….but I did.
I’ll check in again when I get back to FL. I’m thinking of you all and hoping that no one is suffering too badly.
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BooBoo~ Hi sweet woman.. I’m glad you’re enjoying cooler temps. I hate the heat. Much rather the cooler temps these days. I’m happy Alexander is filling you with joy… you deserve to enjoy every second with family. I’m sending gentle hugs for everyone. I’m sorry about your panic attack, I’ve had a few my self. Not pleasant! Love you!
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Emac~ your post , I can relate tocompletely. I see my friends vacationing. While I vacation on my pillow. I would not be any fun anyway, I can’t do anything. My DH and I were discussing renting an r v with a bed in the back for me to travel with so when I need to lay down I can lay down. What we will do where we would go. Who knows?? I’m always too tired to even think about going anywhere. I’m very much a. Homebody. Always have been. Don’t know why. Maybe it’s because my family home my mother lost to the bank and it’s haunted me forever because I loved it there. It should still be in the family. I think there is a connection there.
Also here for any pocket duty, Candy with the run down. Sweet woman. Hope you’re good too.
Tanya ~ hello dear.
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Hello all.
Just reading along with all your posts. I did PT today-- going once a week and doing home exercises every day. Not much help so far, but what can you say. It is what it is. Need shoulder surgery, but cannot have that. Chronic back issues, so not going to miraculously get better.
Now, I have insurance issues---- I had to switch insurance July 1. Prior auth needed from doc for the Ibrance and Lupron. I have been on these meds all along, and need refills/ appt for shot, and we need the paperwork done with insurance. So rush rush to make the calls and get the paperwork before run out of meds. I am doing the legwork(calls) and I am the patient. My doc office nurses--- PCP and MO-- are frustrated they have to do their job and submit the paperwork.
Just tiring being a cancer patient.
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Hi, Candy! I’ve been wondering how your insurance has been going. I’m so sorry you’re having to deal with that. I have good insurance through my husband’s work, but they only refill Ibrance a few times before I have to go through the crap of getting everything resituated. I went over the top on one of the specialty pharmacy people once because I was about to miss doses, and she said, I understand how you feel! Wrong thing to say, Lady. Oooh, I let her have it. I was so frustrated, as I had been trying and calling nonstop for over a week to get someone to help me. There was a go-between that had to approve the med. I finally found someone at the insurance company to hear my pleas of help. She was wonderful and got everything squared away die that time, but we shouldn’t have to be out through that. Hugs, and I hope it gets worked out quickly.
Booboo, enjoy that weather and that baby. They are so fun.
Mel, a change of scenery might so you some good. Ima homebody as well, so I understand. It’s hard to come out of the comfort zone.
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Hi, Candy! I've been wondering how your insurance has been going. I'm so sorry you're having to deal with that. I have good insurance through my husband's work, but they only refill Ibrance a few times before I have to go through the crap of getting everything resituated. I went over the top on one of the specialty pharmacy people once because I was about to miss doses, and she said, I understand how you feel! Wrong thing to say, Lady. Oooh, I let her have it. I was so frustrated, as I had been trying and calling nonstop for over a week to get someone to help me. There was a go-between that had to approve the med. I finally found someone at the insurance company to hear my pleas of help. She was wonderful and got everything squared away die that time, but we shouldn't have to be out through that. Hugs, and I hope it gets worked out quickly.
Booboo, enjoy that weather and that baby. They are so fun.
Mel, a change of scenery might do you some good. I'm ahomebody as well, so I understand. It's hard to come out of the comfort zone.
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Laurie, I am glad you checked in, have been thinking about you a lot. Glad you are seeing family and enjoying spoiling your great nephew. That is great.
SeeQ, you are right, I should take the information at face value until something happens to say otherwise about how long I may have. No one really knows.
Have not done too much today. Been doing surveys, watching videos for money and listening to the radio for money. I managed to save up enough survey money to replace a portable washer/spinner combo for a cheap price. Enjoying that, just getting things arranged to store the other one since its spinner already works. Already sent the old one that stopped working to recycling. Will probably just go to the grocery store and do short walks since it is hot and humid here. Tomorrow may be exciting because we are finally opening up tomorrow, meaning indoor dining, more regular shopping, gyms are open. I am debating rejoining a gym that is inexpensive to get more arm and leg strength training since I have no problems walking. Been doing squats, hamstring, calf and hip exercises. Adding one at a time per day. Tomorrow, I will be up to 15 of each. Figure that stronger legs mean it is easier to get myself up off the floor should I fall without having to hang on to something.
Talk to everyone later, have a good day.
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I could take A listen to my oncologist who tells me how well I'm doing. It just doesn't match up with how I feel. So it's gotta be the medicines.. and or cancer fatigue in general…
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Mel- I agree with your statement. Prior to the small steady progression of my liver mets, my MO would say I was doing good. But... the fatigue, and the ickies. Really, I was doing good??!! Even now, she says that the cancer is slow, but.... I feel so yucky. Guess the meds is what makes us feel so cruddy. Or just having cancer in our bodies period.
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Hi everyone, I've just been reading along all your posts, I'm still feeling tired even after the blood transfuseion and extra week off chemo. When I took Finn for a walk last Sunday, he accidentally put his scooter in front of my feet and I fell down, I didn't hurt myself but I was so weak in the legs I couldn't get back up, this lovely young couple had to lift me off the ground, I was quite embarrassed, luckily we weren't too far from home. I'm thinking I might have to start some leg strengthening exercise like you Mara.
I have a petscan next Tuesday, hopefully the vinorelbine is still working. I'm like you Mel, I've become a real homebody, I go to my bingo and the hospital and I have Finn over for visits and that's it. I'm in for pocket duty if anyone needs it and take care of yourselves.
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