My Husband, My Life, My Love, My Family, My Cancer
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Just feeling kind of lonely and blue today.
Last night an old friend called. Had not heard from her in over 6 months. We chatted about her family, job, etc. It brought back memories of when I used to be friends with her. And how my life is so different now. Then this morning I had a friend request on Facebook from an old co-worker. Yet again, old memories brought to the surface.
Not much going on today--- laundry and reading. Quiet in my home alone. So I tried to call my sister to chat. She was busy with her family and was going to plant a rose bush in her yard this afternoon. I told her to call me back when she gets the chance.
I just feel adrift. No workplace or co-workers anymore. Not much to do in my "retirement" , and the Covid world we live in now. And I feel so "separate" from others anymore. My world of scans, biopsy, test results, meds. I just feel like I am living a different life from the other people around me.
Cancer life is lonely.
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I hope I am not being too annoying here by offering unsolicited advice but I suggest those who are feeling sad or hopeless about living with cancer check out the book "Cancer As a Turning Point" by Lawrence LeShan. Other women on BCO have found it helpful. This is a book you can either use by yourself or with a therapist to do some deep soul searching to find out who you are and how you can make your life better even with cancer. There are several written exercises to do to help you think about your life, how you would like your life to be and concrete ways in in which you can make it better. None of us can go back in time to where we were before our cancer diagnosis, but we can move forward and figure out how to live a more fulfilling life during the time we have left.
It's not just passive reading-there are 29 exercises which can feel overwhelming. I think I did maybe one a week and still have more I could. The exercises encourage you to reflect on who you really are and what you want out of life and what is attainable today. I wish I had read this book before I got cancer-in my twenties or thirties.
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Candy, I empathize. I think togetherness is going to take a much longer time than we want with this pandemic. Some regions are luckier to be opened up now but it will be a long time before we can get together again with friends.
I kept myself busy with the laundry since I can only wash one blanket at a time, got tired out so I tried the machine here at the apartment complex. Got a lot washed but would have had to wait a while for the dryer so just brought them home and tossed in my wee dryer. That was my purpose for today.
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Morning all--- evening to Kittykat with the time change.
Thank you Chicagoan for the book info. Maybe I should get that book as I am a reader and maybe it could help.
My sister did call me back last night-- sometimes she says she will call and does not. Anyway, she was talking about her daughter, my niece, graduating from 8th grade this week. Going to high school in the fall. The school is having the graduating ceremony on Tuesday night. Our area schools have not been in lockdown and have went to in-person class most of the school year. IDK how many are in her graduating class, but each student got 10 tickets. So, if a class of 30 (rural school) then could be 300 in attendance. In the gymnasium. So, of course, I cannot go. Then, after the ceremony, my sister is having family/friends over to her house for a party. Yet again, I cannot go. Yes, I am vaccinated for Covid. But my sister and her family are not. And, I bet, most of the extended family is not either. As probably most of the graduation crowd. I live in an area of anti-Covid, anti-vaccine, anti-masking.
If not for the cancer and the low counts, I am vaccinated and should be well covered against Covid. Wear a mask and go. But.... with the low counts, the recent slight progression of the cancer, the recent PE, I do not want to take the chance. So the cancer wins again.
See, I cannot forget the cancer.
Last night I made spaghetti for my evening meal. I took a bite and felt sick. Sometimes I do that. I tried to eat it, but ended up tossing most of it in the trash. I do not feel well a lot of the time--- nausea, tiredness, you all know the drill. So I do not feel like doing a lot of stuff.
Yes, I need distractions, a life outside of cancer. But easier said than done.
I am trying to be upbeat today, but hard to do.
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So this week's pocket duty list--
Sondra- CT Monday
Moth- MO Monday for scan results
emac- Check in? How did your scans and MO appt go?
Intolight- Check in?
Me(Candy)-- Tempus results of liver biopsy sometime this week and maybe televisit with MO to discuss next step (next scans)
Elderberry- Telehealth MO visit Monday and infusion Tuesday
Anyone else?
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I was really bad yesterday because I ordered out twice yesterday. I did walk a lot and work hard with all my bedding (which I will not exclusively wash in the bigger machines here|) and walk about an hour so I was really hungry. It overfills but does not make me feel sick at all.
Today, am sticking with the basics small amount of beans with sprinkle of cheese, small amount of beefless ground, bran cereal 1/4 cup for crunch and queso with a dollop of mayo, combine, sprinkle with onion powder and salt. Yummy and a nice small portion to tide me over til lunch. Nothing else going on, ordered a window fan because I was a fool and got rid of my last two when I moved here duh. I will also have to buy a new AC window unit as well as the free one died.
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candy: I am sorry about your feelings of loneliness and blues. Cancer is a lonely place even when surrounded with friend and family. The pandemic has only made it worse. When I was first diagnosed I would watch people out walking on the streets and resent them for just walking around like everything was just fine. Stupid. Of course, everything was fine for them. Not their faults the world just got turned upside down for me. I am so done with Covid. I can't wait to have friends come over. I am thankful for emails, Skype --- but dammit -- I want to hug someone other than my husband and my cat. That being said, I am glad I have a best friend in my husband. I am an introvert but I do like seeing people. The past year must have been so hard on single folks.
BIG THANK YOU, Candy, for keeping track of all of us and all our tests, scans. I can barely keep track of my own.
My last blood work was really good except my potassium was - according to Googling Mayo Clinic -critically high. Yikes! Having read the Mayo Clinic I am now aware of "heart palpitations, tiredness, weakness" Before reading my results I was clearing out a bed to prepare it for vegetables, filled window boxes with flowers, scrubbed my bird feeders.......I felt pretty good. I have my tele-appointment with my MO tomorrow. I have my infusion on Tuesday and I am hoping the high potassium doesn't throw it a curve ball.
Cheers to all!
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Candy, I am sorry you are feeling unwell and that the meal you made did not taste good either. I don't blame you for not gathering at your sisters place because they are not vaccinated and you would certainly not want to infect anyone, I totally get besides just looking after yourself. I hope you feel better soon.
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mara- I would not want to infect my family members or the general public, true. But I was thinking more about how the efficacy of the vaccine is not as good with the immunocompromised. For instance, they say the Moderna vaccine has 94% efficacy, but with the immunocompromised it may be less---we do not know the number, but, say, 75% effective. So I still have a chance to catch Covid, even though I am vaccinated. And with them not vaccinated they may be spreading asymptomatic illness.
Edited to say- My nausea is not that I think I have Covid, or any other illness. I do this sometimes. Fix a meal and then too icky to eat it. This happens some and has been that way all along. The meds?? Especially the Ibrance?? Just the joys of all this--- periodic nausea.
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Candy and Elderberry, I wanted to say something supportive and then realized, what can a person say in the face of this...ugly truth? I remember just after diagnosis, sitting with my Hub in the same coffee shop we go to every wknd, surrounded by the same local folks. It's a scene I am usually part of, but all of a sudden it felt like I was watching my own life from underwater. My body was there, looking normal, only I was somewhere else. Separated. Walled off. A glass dome had descended and closed over me. Everyone could see me. I could see them. But I was out of reach. In a different atmosphere. Like discovering that nto only were you adopted, but your biological parents are aliens. You no longer fit in where you used to. It's like you don't belong. I am looking for a way to describe it but am failing. It's a free fall into an unknown life and it's shattering. I think even if life returns to looking normal and we manage to fake our way to appearing normal, we never really are. We are, on some level, forever changed by cancer. The only people who get this are those who have been there and know what you mean.
Candy - I am a stress starver. When I am stressed out I can't eat. At all. WHen I thought I had ute cancer in April I even quit drinking coffee, which is a signal to everyone that I am on death's doorstep. Because I will leap over tall buildings in a single bound to get coffee! I loooove my coffee. But when stressed, nope, no way, forget it. All I want to do is barf so food is a no -go. It would not have mattered how good the cooking, nothing appealed. Not only are you dealing with meds and misery, but the combination of the two can lead to stress starving. It's a thing.
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I hear you Candy, side effects from our treatments suck rocks for sure. I did read that the efficacy of vaccines may not be as great with immune compromised people.
I still plan to mask up for the forseeable future even after I get vaccinated tomorrow because I like the idea of avoiding cold and flu season as well.
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Hi Candy, just dropping in to give you a big hug from down under, I can relate to constantly feeling unwell. Hopefully your MO can let you know Monday which direction he intends to go in regards to your liver biopsy.
I the pocket of everyone needing support this week .
Mel, you're always front and foremost in my thoughts as well. Love to everyone from me, no matter what the week holds in store for you.
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Grannax, love the pic, so glad you got to make it to the game.
Mel - I'm hoping tweaking your meds gets you feeling better.
Candy - are there any parks near you that you can get to? You're weather should still be be pretty comfortable. Risk of transmission is much lower outside, and you should be able to keep your distance. Just sitting with nature around you might lift your spirit; maybe pack a snack and a book to read? We have very short spring before sweltering summer, so I'm trying to get outside every day while it's nice. I feel so much better when I've had even a few minutes outside. You've had things building up for awhile; it would be nice if you could find a little release.
Your description of being under a glass dome was a good analogy. I felt that way for awhile after diagnosis and cancer consumed my every thought. Life-altering experiences change us, but not the world around us; it just goes on as it was.
I have a parathyroid scan tomorrow. I found out Friday, that I have to go, spend about an hour there, then leave and go back four hours later. I have routine blood work on Wednesday. Then, we're getting ready to travel to go house hunting and visit family soon.
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Candy, hope today will be a better day.
Pockets for anyone who needs it.
Will be getting my first vaccination jab today at noon. When I get home, going to order an AC unit from Home Depot and have it delivered within 3 hours. My brother initially was saying not to order one until we saw one together but he was busy last weekend and this weekend so pulling the trigger on a window unit. Did not want to do it tomorrow in case I was laid low. I plan to proactively take tylenol and advil along with buckley's at night. Not looking to get major SE. Still plan to walk around as well. Going to UBER there too. Don't feel like taking a bus to an unfamiliar destination. Other than that, nothing going on for me.
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SeeQ, Good luck with the parathyroid scan. I’m very interested in how it goes for you, as I’m being watched for issues too. In your pocket.
Hello to all, I’m a bit behind on reading because we were away for 5 days with only spotty internet. I’ll be catching up today. I’m here for pocket duty for anyone needing it too.
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Morning all. Pocket duty for Sondra, moth, Elderberry, SeeQ, and mara today.
Well, get this. I had Zoom gaming last night. You know I have been doing that. Games we can do online instead of in-person. It is 3 people and me. We are all vaccinated. And we are nerds, so we take the virus stuff seriously. Anyway.... it was mentioned about since we are all vaccinated maybe we should take the plunge and meet in person and do a board or card game that we could not do online. So... we are going to meet next Sunday night in person. They were really nice about my situation with the immunocompromised status. Said if they ever feel under the weather-- not covid but just a cold-- they would cancel. And they would wear a mask around me if I wanted. And I could even sit separate and they would move my game piece around the board for me. Haha.
I am going to give it a try. I still worry though. It has been over a year since I have been out except for the medical stuff. And, also, with feeling icky sometimes--- fatigue and nausea-- I worry about planning something and then feeling bad when the time comes to go to the event/gaming. I didn't used to be this way.
And then, the next treatment. What med? What side effects?
But, just take it a day at a time. I guess.
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Good Morning Ladies ~ I hope everything and everyone is doing good. Monday's kinda suck. But it's sunny. To look at the bright side. Don't know what I'll do today laundry? Yuck. But it gives me something to do. Hugs to all who have anxiety.. I've been having some really bad anxiety. I want a service dog. I'm a mess since my dog died.
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I hope you can get another dog as an addition to your family and therapy as well. You deserve happiness and joy back to your life.
I got back from having my first vaccine jab. Got the Pfizer one and am already scheduled to go back in September for the second one. Only took about an hour round trip as I ubered both ways as it was across town. We will see if I get any side effects. Swinging my arm around randomly to avoid the arm pain, lots of water as well. Going to take tylenol and advil with meals and immodium to hopefully avoid any digestive issues. We will see how it goes.
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Virtual mbc meet up in about 30 minutes. I look forward to seeing you all, if you can make it.
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It was great seeing you again, Mae. Would love it if more could join.
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I will try next week. I had appointments this morning.
So go my full scan results - mixed. Liver mets continue to shrink, new spot in lung susp for met & abdo lymph met grew a bit.
MO gave me option to switch tx now or rescan in 8 weeks and see how things look. New lung met is near radiated area for prev met. Probably cannot be radiated again but we will ask RO to look. I chose to wait 8 more weeks. The new areas are small and not in critical areas so we can wait a bit. Also gives me more time to mentally prepare for letting go of my 1st line. Things have been going wonky since Nov but I was still holding on to hope I would be a super responder to immunotherapy. My liver responded well, technically beyond the median pfs in studies; but still of course want longest time possible
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Mel, I prescribe a foster dog... When you are ready. Or a kitty, for a change. Animal people need animals!
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Moth- Sorry for the "mixed" results. Hoping your scan in 8 weeks will look better.
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Hi, Moth. Missed you today. I’m sorry you’re having issues with the lung met growing. Yay for stable liver. When you say abdo lymph met grew, how do they see that? I’m sorry about that as well.
Hope to see you next week.
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DH and I are allergic to cats. So no go with the cats. I want to sumo much have another dog. Is something on my mind. But if DH doesn't want to do it. I can't, because he would have to help and be apart of it. There are nice things about taking a nap and not being woken up by a bark fo go out. But I would do it in a second to have him back. My friends are looking into a comfort dog for me with my anxiety. Ones a nurse and the other is a social worker. I'm going to get the hospital involved as well. Someone knows something somewhere. Tomorrow is xgeva. Oh boy! Thrilling. Get it over with. Hope everyone who needs pocket duty tomorrow gets more than enough of it!
Moth sending you thoughts.
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KBL, the lymph met in the abdomen apparently shows on the CT. I've seen the CT report on my met in the mediastinal node before so I guess they show on CT
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Moth, can the suspicious king spot be biopsied before making a decision? Or could you have an infection of some kind?
KBL, nice to see you too.
Hopefully we’ll be at the cabin later this week. If we are, I’ll give a quick virtual tour of the cabin deck and mountain view to anyone on the call.
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Sorry I ducked out again for a bit. I was back at work and that is a continual challenge for me and it takes a few days to recover. I am also still sitting with my PET scan results and trying to wrap my mind around them. It's good news. The PET scan showed that the lesions in my bones have healed. I had no abnormal uptake in my bones at all! There was an area of "diffuse" uptake in the right breast near where my original tumor was. The correlating CT showed thickened skin but the report reads that the findings "could relate to recurrent malignancy or posttreatment findings." I have so many questions!!!! Part of my brain is exploding with joy because to my mind this reads like I am NED but at the same time I'm waiting for the other shoe to drop. It's like an alligator that used to be on the surface but has now dropped below. Is it still there and we just can't see it? The bit about the uptake in the breast is concerning. I was outside pulling weeds when the doctor called and she only left a brief voicemail so darn it, I missed her call and have a message into the portal for clarification. It's good news. I couldn't have asked for better and I feel like I have a new lease on life. At the same time I'm still having a lot of pain and exhaustion so that challenge has not gone away, even if the cancer has, possibly. So it has been an emotional roller coaster in my house this week.
I'm rambling, sorry. My mind this week is a mushy mess and I'm tangential and forgetful. Hugs to everyone here. I think about you all, even when I am not routinely posting. To echo several of you this cancer thing is lonely. It is a life that I think no one completely understands until you are in it and that in itself is isolating. I think that's why this group is so great. We all "get it" here.
I will check in again before I go back to work this week. I am off to Arizona to see family May 24-31st so if I disappear again, I'm sitting in the sun trying not to fry my glowing white Oregon skin.
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Emac,
I so admire you that you can still work with this disease. In the very early days after dx, I was still trying to work, but had to lay down many afternoons because of fatigue. I felt guilty because I was still on the clock. I always got my job done, but knew I couldn't continue like that for long.
I feel like your positive attitude is a result of being engaged in something that keeps your mind active and away from MBC. Now that things are starting to open up and as new opportunities present, I am going to try to find something that would fulfill me. I think it's the key to living with MBC.
BTW, congrats on the very best news ever. NED. Wow. Wouldn't that be awesome?
All the best to you.
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Emac- Congrats on the good PET report !!!! I had been stable for the last 3 years (just recently some small increases in the liver mets) and I too have the exhaustion and yuckies. I guess it is the meds. To keep us stable, but makes us feel crappy. I too do not know how you continue to work with all this. Some on here still in the workforce. Stronger than me, I guess. Enjoy your family time.
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