My Husband, My Life, My Love, My Family, My Cancer
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haven't seen Minnie around at all lately.
Bliss was thinking about you today. Good to see you. welcome back dodgers as well. I'm sorry these are tough days. I know what you mean. I realize my five year since diagnosis is coming quick and that's what is bothering me. I'm just positive my scan will be shit. I'm worried already. I hate having cancer. Ugh! For us all.I’m sorry Mara. I wish there was something I could do. I lost dad. May 13,2019. So it’s still raw for sure. Same for you dodgers. I’m so sorry
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Thank you Mel, I put on some mindless TV and just finished the crying I obviously needed to do. Guess the best thing is just to feel it and let it go. I will say I did not call my older brother about my distress as I did not want to upset him if he was not thinking about it but if it gets that bad again, I will call.
I will be in your pocket as well with cinnabons and coffee or whatever you like. Thank you.
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every year since this has happened I have had issues around this time of year I don't realize until it gets really close. It just reminds me of the hell I had to go through and I don't want to ever do that again. Or anything close. Maybe after this day goes by I'll feel better. I sure hope so.
I’m sorry you were so upset. I know that feeling when you just have a day of tears. We love and live. Sending hugs.
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Insomnia rearing it's ugly head. It gives me time to think about things I don't need to , or want to think about. It's like every time you walk you stub your toe really bad and the pain takes time to get there. That's how my mind feels when I feel down and funked out like I have been. I hope this new load of fabric that my DH got for me will help. It's so bright and cheery. Not to much either. Just like lynnes 50's generous gift of fabric. I have more now to fuss with, it felt good to sew today again. I enjoy it. I'm going to do more tomorrow. The different choices are wonderful. I did valentines for my dd she asked me. So I did
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Candy - so sorry about your friend losing her dh so suddenly. On another note, I really appreciate how you keep up with the pocket duty list.
Mel - the Valentines mask is cute. Your dd will love it.
BevJen ‐ is so frustrating when people don't hold up their end. I try to be pretty laid back and patient (okay, okay, I said 'try'), but that's all out the window when there's a deadline (your Tuesday) or there's just no responsiveness. Then, I'm a PITA until it's resolved.
January was a hard month for our moms. I lost mine 1/26, but it's been many years and it's not as raw. She be of the mind that there was no point in carrying on, and to just get on with things. She's still a regular part of my life, if that makes any sense.
Someone at my MO's office must have been working this weekend, because my bloodwork popped up in the portal today. Some of it looks a little wonky, but my ALT/AST were a-maz-ing - the lowest they've been in 18 mos. Still waiting on TMs.
Pocket duty for Karen, Mae and dh, BevJen, Rosie, Snowdrop and...anybody else?
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Good morning
Jumping in for pocket duty Bev Jen, Karen and Booboo.
Sorry for the January anniversary of losses.
Candy sorry for the sudden loss of your friends husband.
Take care all
Tanya
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Mara,
What a tribute to your Mother. Your love for her is so big, and tears are a way of showing how much you still mourn her passing. I share your sadness, and hope that today is a better day.
Love and big hugs
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I’m there for pocket duty too! Bevjen - hoping Keytruda does the trick. My SIL works for Merck (developer of drug). He runs the final animal studies b/4 drugs go to trials. As such, he needs to attend all meetings and read all literature and all he can say is what a great drug it is beyond its initial use for lung CA.
Booboo - fingers crossed for your needing Abraxane again.
Mae - pocket duty for hubby!
I know I missed someone but I’m there for all of you.
Requesting pocket duty for hubby on Wednesday. He is scheduled for cardio version for afib which has been going on for a few months already. Had this done 2x in the past and both were successful for 2-3 years at a time. Just wish I could go sit in a corner in the hospital and not just drop him off. COVID stinks. He at least has had both shots of vaccine (no reaction to either!) so that reduces chance of him bringing it home to me.
Hugs to all
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Morning all.
I spent yesterday afternoon making some phone calls to church friends. Then I did the Zoom gaming last evening. So I have been off the boards till now.
BevJen- Since this is now Monday morning, I am sure you are getting the prescription situation worked out. But it is frustrating to have a delay that way. Pocket duty for you starting Keytruda. I would be anxious too. I stress over new meds and how I will react to them. I have not had to change cancer treatments yet, but when that day comes I will be posting asking what to expect. Good the pharmacist was excited about you starting Keytruda. That sounds promising.
Booboo- Pocket duty for you starting Abraxane on Wednesday. I do not see that in your profile as a previous treatment. I hope it treats you kindly.
Hi to Bliss and Dodgers. Good to see you guys.
Mara- Sorry I was not online for when you posted. I am sorry you had a tough day thinking of your mom. I lost my mom 7 years ago. The first couple were especially hard on the anniversary. But it eased some over time. And I am glad she is not here to see me fighting MBC.
Mel- 5 years with MBC is a big milestone. First, congrats for making it. But also I understand the trepidation of the anniversary.
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In Mae, BevJen and everybody's pocket today with cinnabons and whatever you need.
I woke up feeling tired but not so sad. Sat around a couple of hours, then forced myself out for a walk. Was slightly slippery but my boots handled it pretty well. Not feeling upset today. Thank you for everyone. When I was in my bed last night, I was no longer crying, just mentally telling my mother I love her always. Then I fell asleep.
Mel, I am glad that you have the masks to keep you busy definitely helps with stress. Like the patterns as well. So glad people are providing you fabric to make them as well.
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Mara, thinking of you. I lost my mom in 2009. Talk to her a lot still. I’m glad you’re feeling a little better today. Hugs.
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Mara,
Ditto what KBL says. I lost my mom in February of 2016, and the five year anniversary is coming up. At this point, I am able to think about her in a different way, and remember good times that we had together. I wish this for you as well.
Hope you have a better day today.
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Dodgers, I will be in your pocket on jan 20. My only thing I can do is give you virtual thoughts as well. I am sorry about your Mom.
I will say I am tired today but feeling mentally better. Just going to walk around outside today so I don't sit on the couch all day. Already been on one walk, goiing for another walk.
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Mara51506– thanks for pocket duty Wednesday. I sure did miss my mom but part of me is glad she isn’t here watching her daughter die from cancer.
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Hey friends, I was trying a new thing on the weekend where i really limited how much time I spent here. Anyway, back again.
ready to jump into pockets!
I'm sad for those of you missing your moms.
I'm also torn on the mom issue. My mom is alive and I'd say we have a good relationship but she also can irritate me and as she's very anxious herself, she's not a calming presence. I've been sort of relieved that covid has minimized our interactions since my mets dx. At the same time I feel bad for her because if I had to watch my dd go through cancer at a distance I'd be going out of my mind with frustration. So then I feel guilty. But also relieved. But guilty...
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Just checking in after seeing my MO today. MO was not really phased by the mri report of interval increase in 2 liver mets or the call for the better contrast. She still suggests we consider ablation of my liver mets and is setting up a consult with an IR. She’s been trying to get a pet scan approved by my insurance and thinks maybe having an IR involved for a possible procedure will get it to be approved. I wonder why getting a pet scan is such a big deal for my insurance, it seems like others have them all the time.
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My mom would be so sad right now if she were here and watching three of her children suffer with cancer at the same time. I can’t even imagine what that would feel like.
Mara, usually when I cry, I feel less stressed after. I don’t cry often,but I sure feel like I could use a good one right now. My husband has taken the brunt this week of one hellacious mood swing. I keep telling him I know I’m doing it, but I can’t seem to help myself. I’m on my week off of my medication, so hopefully it will calm down once I start again. As soon as I lose my cool, I tell him I know I’m doing it, but it just spits out. He felt very picked in the other day, and I don’t blame him
I went to go to an office today, not a doctor’s office, a government office. Totally forgot today was a holiday. Yep, two-hour wasted trip. Thankfully, the traffic wasn’t that bad. I got home, and ten minutes later I heard all the sirens. It was right where I just was, a car accident. So along with the bad luck, I have to count the good luck.
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Dodgers, my mom was around for four years of my cancer and she was quite stressed out all the time, understandable but stressful for both of us. Then she got a lung cancer dx in November 2018 and that was tough managing both of our diseases. She was much weaker and I was in charge of arranging some of the nursing. Truthfully, I am glad she is no longer anxious about me nor I about her. Her passing truly was peaceful as she went quick. She declined for a year and a half when doctors treated her like it was heart disease causing issues without checking her lungs until it was much to late to treat it.
KBL, it is lucky that I don't have someone living with me. Partly for me so that I don't have to stress someone out with my crying or have someone try to make me feel better. I needed to let it out. I also had not slept well for the last few days, self inflicted by going to be very late. I am feeling better today though feel a cold coming on. No loss of smell or fever so not concerned about covid. I am just keeping up with tylenol and advil and will take buckley's tonight and put vaporub in my ears as well. The two walks have been nice too. I plan to walk one more time after young and the restless as well and call it a day. I am so glad that you were not involved in that accident.
I ordered in my burgers so going to have them for lunch. They are snack size and nowadays, I order them plain and I add shredded, cheese, garlic powder on the cheese and use onion powder on the burger and toast it up in my breville. Add a small amount of mayo on each bun. Quite yummy and enjoyable.
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Good day everyone. Thinking of you all. So happy to see some folks stable! Sad to see the sudden death of a DH, especially sad to see progressions, which include me. Ugh. This space is so valuable reading about how folks are living with this @#$% disease, and moving from one therapy to another. When options are presented I feel more confident having read though these experiences.
Had progression on my CT in late December. Met with the oncologist 14 January. Will be joining a clinical study using Fulvestrant (a relief since I know that one), switching to Verzenio, and adding Copanlisib, an infusion PI3K inhibitor. I just have to have normal WBC and ANC prior to starting the study, so no medications for 2 weeks. It does feel a bit strange.
Sending positive thoughts to you all.
Moving
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Movingsoccermom, I'm now on Faslodex and Verzenio. I have PI3K, so I'm very interested, as I'm sure others are, in the study you're joining adding Copanlisib. I don't know of that drug, but Piqray did not work out for me. Please keep us posted.
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Movingsoccermom,
I'm another person who would like to know more about that clinical trial -- I am starting another drug tomorrow, but Verzenio is apparently on my list for possible future use. Haven't heard of that other drug so am also very interested.
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Hi all.
Moth I can relate to the mom being anxious. My mom had a lot of anxiety issues. So if she was alive to see all this with me, it would just make it worse. I would be anxious for her being anxious for me. Weird to say, but I think it was God's timing that she died before my cancer diagnosis. Know what I mean?
Rosie- Sorry I cannot remember your "increases" without going back in the posts. How much did your mets increase by (and what are their sizes now) for your MO to want to move forward with IR?
KBL- Thank God you were safe from the accident.
Movingsoccermom- Pocket duty for your new treatment.
Boring, blah day here. I did get a load of laundry done, but just do not have the umph to get anything done. Not much to do anyway, but just not in the mood to do anything. Then the thoughts start about my old pre cancer life. The wishes I didn't have MBC. Etc.
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Thank you both.
Mara, I’m sorry you’re starting to catch a cold. I hope you kick it out quickly.
Moving, so sorry about your progression. I hope the trial will kick it back.
Candy, I have those kind of days where I don’t feel like doing a darn thing. I try to just let them happen. I hope you were able to relax and not stress over it.
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Moving, I too am sorry about your progression, good luck with the trial.
Candy, I have those days myself. I find on those days, I tend to feel more depressed about minor worries going on in my life and much more tired.
I just got a call from a lawyer who says that my testimony in a murder trial is being put off until October. I first went to court for the preliminary hearing in Sept 2019 and I was supposed to testify in Feb 2021 but due to covid it is being put aside. Not a big deal anymore. I found bloody clothes in my backyard in Jan 2019 and called police. Did not see anything but did call police as I was worried. Oh well, I don't mind if it happens later.
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Candy, My most recent (end of Dec.) mri didn’t give any measurements at all, just said “interval increase” in the Impressions section. It seems there weren’t many good views of the mets, maybe because of the contrast used, I don’t really know. Before that my (Nov.) ct said the previous 6 mm met was now almost undetectable, but no other mets mentioned. I’m pretty sure there are more. I think my MO is trying to get imaging to see what’s really going on—if I really have as low a tumor burden as the scan reports are saying. I just feel like maybe the scans aren’t good quality, if there’s such a thing. I’d be very happy if it was true but I don’t want to get my hopes up. I think the ablation idea is to get rid of whatever is still there and hope it lasts for a while. She said she’s seen good results with that on her patients. I hope that made sense.
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Trying this sleep thing again. One never knows. A miracle might happen and I may sleep an entire night. Or even fall asleep before midnight. Hope you’re all resting and sleeping like babies!
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Good night Mel.
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Mara- murder trial?? Wow that's scary yet exciting at the same time. I have a big interest in True Crime so would be all over this. Weird maybe.....
I'm having trouble sleeping lately. I'm gonna try ASMR videos again. Anyone else enjoy watching these?
Ttyl
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Mel have you ever tried melatonin coupled with sleep hygiene?
One of the things my MD had me do was regulate my sleep and set a strong circadian clock. Here were the rules; NO light in BR. Use a towel over the lights on a phone or other appliance and black out drapes, Room must be COLD (ideally less than 68 degrees) tons of blankets fine but cold room. Take 20mg melatonin at roughly same time at night. (Start w 5mg WORK UP to 20 slowly...). Melatonin has anti cancer benefits as well at 20 mg. Get outside in sunshine first thing in am, even just walk to mailbox or around block.
The biggest difference came from Neurofeedback. That totally changed my sleep. I did 20 sessions of NF a system called "neuroptimal" 30 minutes per session. It make my sleep deeper and more restful. NF works with the "habits" of the brain (vigilance, arousal etc) and help the brain be calmer and less easily roused. Small change, much better sleep after.
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We have new couches coming today after ordering them in September, and my grandson is coming for the day tomorrow. I really needed to clean my house. I put on my wireless headphones and was singing at the top of my lungs. I don’t know why my doxie kept asking to go outside. Haha. Man, I need to listen to music more often. It can make you dance, laugh, and even cry when you know you need it. I almost cried during one song, but it wasn’t quite there yet.
I tried melatonin once. I had some weird dreams. I don’t know what strength it was. Maybe it was too much as a beginner. I should try again at the lower dose.
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