My Husband, My Life, My Love, My Family, My Cancer
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Thanks everyone. I am so glad I have put cleats on my shoes because even going across that ice to put garbage out, no slipping and the foot raising is still happening, feeling more like a march than actual walk, my wonderful shoehorn is great as well to swap from the cleats to other sneakers, spent time practicing and don't need to sit to use it. I am going to try to calm my mind down in the meantime as the worry just makes me angry feeling and that will not help me or my cats as then I feel cranky toward what they are doing. Will work on that over the coming weeks.
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Pocket duty for you two, Candy and Mara.
Mara, Your building upkeep issues could become very serious/ dangerous. Documenting them and complaining tothe owner sounds like a good plan. If there is a Building Safety department in your city I would hope they’d get involved. You might have mentioned that already and I forgot.
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Thanks Rosie, doing both of those things. The garbage is not being taken either so I will take pictures as well. I f I could afford other places, I would move but I cannot so just plain stuck.
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Hello everyone.
I'm not sure where to post this, but I'm looking for some advice.
I was looking over some past scan results from this year and I'm feeling worried.
I've had 2 brain scans this year and thankfully no sign of mets.
But, there is mention of white matter disease, possible small vessel ischemic disease, or dylementation. The most recent scan from August mentions white matter change is greater than expected for someone my age.
I have switched MO'S a couple times this year, so I'm wondering if this got missed. It doesn't seem cancer related, so is it possible nothing was said because of that? I mean it sounds like maybe it's important? Has anyone dealt with this.....I'm gonna cross post.
Thx
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Mae, I hope you get your insurance stuff straightened out in time. It's good that your trailer stays cozy in the cold weather. The weather has been crazy here - 70 one day, 35 the next, but no snow! I know the next two months of weather will be the worst, since I'm not acclimated to winter weather, but next year will be better.
Mara - in your pocket for scans this week. Your new landlords are the worst. Since they removed the hallway trash can, maybe the residents could put one out with a bag in it and take turns taking it out? Do be careful with all that ice.
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I’m here for pocket duty. As always, I have lots of wisconsin cheese!
Mara - your housing situation is appalling to say the least. That ice is an accident waiting to happen. And not picking up trash is just a invite for 🐀🐀🐀🐀🐀. Great job documenting. A picture is worth a thousand words!
I started PT for my shoulder. Sure hope it helps. After 43 years of marriage we had to switch sides of the bed when I got out of the hospital. Still need the “wrong side of the bed” due to pain. I see my new MO this week. Then a new Ortho for my back. So many new docs now that we moved. Still need to find a dentist.
Wishing all of you a good week
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SeeQ, I have put a box out there to collect flyers and I pick up things here and there and add to the garbage I take out, flyers are also shredded on the regular too. I will be careful out there as well. I do not have a garbage bin but that may be something to consider even if just from the dollar store. Will look into it.
For pocket duty peeps, I moved today's CT to Jan 27th due to the amount of snow we are getting. Even going in a car seems hazardous so would prefer less snow considering I have to be careful to stay on and lift feet, can't see that happening in deep snow and it is that fine snow that keeps going. We have warnings to stay off the road in my area of the province too. I am also feeling the sadness of losing Mom 3 years ago today and just cannot deal with weather as well.
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Rosie and Candy, I am joining everyone else in your pockets.
Mara, I am glad you decided to reschedule scans. It is not worth the risk of injury going out in that horrendous weather.
Mae, You and your dh are doing an amazing job on your cabin. I can’t wait to see more pictures as you complete more tasks. I would be exhausted. Your cereal story reminded me of a time with my two oldest sons and my MIL. We were spending a week with my in-laws at their cottage in Maine. The boys were eating cereal, and my MIL asked them if the wanted sugar on it. Their eyes grew wide and they smiled broadly and said “yes” in unison. Little did my MIL know that my sons had never had sweetened cereal or added sugar to unsweetened cereal. It opened up a whole new world to them. My dh and I laughed hysterically. I guess we were really mean parents back the. Lol.
Mel, I hope your son has recovered from Covid . It is good that you were not exposed. The virus is out of control around here. It seems that everyone has it or knows someone close to them who has it. Surprisingly, when I went for scans on Friday, it seemed like there were fewer controls in place at the hospital than previously. There was a sign announcing that masks were required, but that’s it. No screening what-so-ever. I casually walked down the hall to radiology and half expected someone to run after me yelling “STOP!!NOW!!”, but nope. They do limit visitors but that must be done on the patient floors. Weird. The cancer center has many things in place to screen and limit people. I know that the other hospital in that same town still screens.
Boo, it is nice to hear that you will be moving to PA to be close to your sisters. It will be so good to have them close for support and/or help if you need it. That apartment is a fantastic find. It is too bad that your dh won’t be joining you. Maybe he will at least visit sometimes.
Tanya, it was good to see you posting. You don’t seem to be online as often lately. I hope you are okay. The other day a picture of you flashed in my head. I was thinking about Hawaii and remembered a few years ago when you posted a picture of you in the water when you visited Hawaii. Just the thought of that place calms my mind and soothes my soul.
I hope that everyone finds something to enjoy today.
Hugs and prayers from, lynn
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Mara, I'm sorry that you're having a rough day with snow and missing your mom. I lost my mom in 2009, so I can totally relate. Hugs to you.
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Mara, sorry you're having a rough time with all your housing problems and weather, and thinking about your Mom. I lost my Mom in May. Even though she was 93 and we knew it was coming, it's always hard.
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Thanks everyone, my Mom had just turned 79 in 2018 but went quick after lung cancer was diagnosed. I am not feeling too bad now, just keeping busy but treating myself to whatever I want to eat. I ordered in a Tim Hortons cheese, sausage and egg on english muffin and hash browns. Not sure if I will order anymore meals. Might take a while to get here as well due to the snow but I will wait. Need to turn my mind off so keeping busy with housework, laundry and some dusting as well. Doing my surveys, and other assorted things to make some money as well.
I have to get to the point where I don't let everything overwhelm me and just roll with it. Remember Mom today but not spend the day crying. She would want me to keep going with whatever I need to do. Besides, I am actually glad she is not around for the pandemic. She was anxious just like me if I don't fix my thoughts and I think vaccines, shots, deaths and the lockdowns would have really stressed her out.
Mocogram, I don't think age makes it any less sad. I know people say they lived a good long life but it does not make it hurt less. Hugs to you, and m\y condolences to you, her family and friends as well.
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Goldens - in your pocket for you first new MO visit. I just got that process started and have a visit with my new PCM at the end of the month...who I need to see for referral to a new oncologist. I'm having to drive about an hour for the PCM, but the oncologist I think I'll see is only about 30 minutes away. There are doctors closer, but none contracted with Tricare.
It's been so long since I had to look for a new doc. I missed a step and had change PCMs twice. I checked all the reviews and details I could find, but didn't call the docs office first. It turned out the first doc I picked recently left the practice. My second choice is, apparently, so popular he screens new patients before accepting them - I was a little surprised he agreed to accept DH and I. Need to find a dentist, too. That's a different insurer, so I think it should be easier.
Mara - hopefully some of your other neighbors will pitch in. I lost my mom 18 years ago this month. Hardest thing ever. ((Hugs))
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Mara that ice looks treacherous. My goodness you'll start sliding as soon as you put your foot down. Stay safe and be careful.
50's had some adjustments to my schedule earlier this year when my daughter and two young GC moved in. But mainly the pandemic stopped my travels. I hope to get done with covid any month or year now so that I can resume some fun activities. I hope you're doing well.
Cereal hmm. I remember liking captain crunch but also sometimes eat reeses pieces cereal. Straight up sugar junk food.
I hope to see some of you today on the 2:00 call.
Take Care all.
Tanya
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Tanya, I agree. The cleats on my shoes do keep me from slipping and sliding which is good. We had a bunch of snow so the ice is covered up but I want to make sure that at least the snow is taken off the steps and I found a way to get rid of the icy patches with alcohol, dish soap and hot water.
I also don't know now who to report the snow and icy conditions to as there does not appear to be enforcement as per the email I received today. The city does not handle property complaints about icy patches on private property.
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(Cross posted with Liver Mets)
I had an interesting appointment with my MO about what my next treatment will be. I've recently flipped to triple negative. MO reviewed her two most likely recommendations (Xeloda and Taxol) and a clinical trial being done in my hospital system studying a notch protein in triple negative bc. She still wants to get the info from Foundation One before deciding on a next step. My contact info has been given to the clinical trial staff and I would need to qualify by being tested for this notch protein that's common with triple negative. That's about all I know about the trial other than it's been going for some time and accruing some positive results. I'm up for going further and finding out specifics and whether I qualify. Two weeks till next appointment and although I'm concerned about the new lesions, I could really use two weeks to recover from my hip/leg pain and my lack of appetite issue before starting a new treatment.
Edit: found the trial info. https://clinicaltrials.gov/ct2/show/NCT04461600
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Hi Lynn, Hi Tanya,
So good to hear from you. My situation with my DH is complicated. He does not want to stop drinking, and I am not willing to live with that. When we moved to FL in 2019, our thoughts were to join a church (which we did) and make friends there. Some of our best friends from home were made through church in PA. Anyway, Covid hit that winter, so it has been very hard to meet new people and develop a social life. I have been spending the last 3 years pretty much sitting on my chair and watching my DH fall further and further into alcoholism.
But the biggest and most important reason I want to move back is my family. I never knew how much I would miss them. I have been so lonely in FL, even though I was able to meet our beautiful Tanya. You are the only reason I’ll miss FL!
My DH will definitely be up to visit me, and we are not talking about divorce (yet). I honestly don’t think I have that much time left, and I’d like to spend it with those I love, and those I can trust. Right now, if I needed to get to the hospital in a hurry or for any emergency, I am not confident DH would be there for me.
Anyway, I am very excited about this move, and am hoping and praying I will stay well enough to do the drive from FL to PA. My youngest sister will be flying in to go with me, so it should be a fun trip.
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Rosie, glad you getting some well needed time off to address your hip and leg pain and hopefully the appetite shows back up for you. Hugs and in your pocket for always with dealing with a BC flip into triple negative. That is certainly a lot to deal with.
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Rosie, I hope you have a better few weeks and your appetite returns. I know when my appetite is low, even though they cause a little bit of nausea, I drink a Boost to at least get some protein. You could either get some of them or a different brand.
BooBoo, I'm so sorry about what you're going through. You hadn't posted about his issue in such a long time, I thought he had made progress. I'm so glad you're going where you know you belong. You love it there. Please keep us posted about your trip.
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Boo, I also thought that your dh was doing better. I am sorry that you were suffering in silence. I am wish that I were close enough to help in some way, but my heart is with you. Is hospice coming to your home now? If so, do you feel it is helpful? Will you find a new hospice team in PA? I look forward to hearing all about your road trip and about your adventures as you settle into your new apartment. You remain in my prayers.
Hugs and prayers from, Lynne
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Rosie- I do hope a few weeks off will help your appetite return. I do pray that a new treatment whether clinical trial or conventional chemo will be an answer to your triple negative diagnosis.
Booboo- I am so sorry for what you have been going through on top of this cancer shit. What a lonely place to be. Going home to your family is the right decision to be loved and supported the way you deserve to be.
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Mara- Sounds like the right thing to postpone your CT till next week due to the weather.
Rosie- So maybe a clinical trial? I need to check the link you posted. And good that you can have 2 weeks to get your bearings. Also getting the Foundation One studies might send you in a different direction-- maybe a mutation like PIC3CA or BRCA that you could use a targeted therapy.
tangandchris- I cannot advise you on the 'white matter" issues, but maybe you should ask your PCP if you need to investigate it more. If not a cancer issue, your MO might not want to address it. I think that is how my MO is, if not cancer she wants you to see someone else for the issue.
Goldens- Pocket duty for your new MO appointment this week. Let us know how it goes.
I got my CT chest today---to follow up the right lung nodules seen in November. They have gotten smaller. Woohoo. MO thinks it could have been a flair of my autoimmune issues I have. Increased inflammation thing. I do not see a rheumatologist on a regular basis. Was on meds prior to the cancer diagnosis. Meds were stopped when the cancer came, and the doc did not want to restart them. Maybe I should follow up with a rheumatologist again.
As my MO was coming into the room and washing her hands and pulling up the computer, she started the conversation that I was ahead of the game concerning the 4th Covid vaccine for the immunocompromised. She said that she had not kept up with the news and when I messaged her (thru the patient portal) about me going and getting my 4th dose, she had not heard about it. She said after I messaged her, she then heard news reports about approving a 4th dose. So, she laughed and said I knew about it, and she didn't. She then agreed that I could get one. So now I have approval from my MO and PCP, so I will go to a local pharmacy later this week and get it done.
We will follow my liver mets per MRI in a few weeks. It has only been 2 months since last scan for the liver.
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Candy, WOOHOO for your good CT chest results. I am doing the happy dance for you. I hope the liver MRI in a few weeks also gives you good results
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Thanks 50'sgirl.
My MO still asks me if I have thought more about doing ablation of the liver mets. We discussed that option back in the summer. Then my sister got sick, and ultimately died. Then I changed from Ibrance to Lynparza. I am still on the fence about local therapies for the liver mets. If the pills (Lynparza) is doing the job, I hate to do an invasive procedure. Pain, and post-procedure care with living on my own. But I think my MO wants me to zap them.
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Candy-678, yay for good results, and blahhh on having to make another decision. I'm thinking of you.
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hugs for Candy!!!
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Mara: check with legal aid, but in USA, at a certain point you are not obligated to pay rent if the building is not meeting basic codes...
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Yay Candy, smaller is good news! Hoping for the same when you have MRI.
Thanks all, for the pocket duty and the support in your posts. I think the MO appointment used up all my energy (even though it was a good appointment & discussion). I had a 2 hour nap after dinner. Way to mess up my night, lol. I know I needed it so maybe it won’t mess up my night.
Booboo, I hope you enjoy your time up north with your family. You deserve to be with those you love and who make you happy.
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Candy- Yay for great results! 👍
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I saw my son today after ten days of quarantine. He came over to the house for his shaver, I missed him. I took one look at his beautiful eyes and teardrops started falling. He's doing good and settling into his new place. Which is what is supposed to happen. I'm getting used to him having moved. Being so close has helped that a lot. I love my kids so much it's hurts. It makes me happy to see him succeed in his new place becoming fully independent and the man he should be turning into at age 25. His birthday is the 31 of January. Going to take him shopping for house stuff. Now that he's better. I'm just thankful it worked out for him and didn't cause any problems of him and DH squaring off with difference of opinions. Didn't want any hard feelings. The timing worked out perfectly. I'm so thankful for that . I'm getting my nails done next week along with my hair. Two things in one week. Wait three therapy Monday. Boring January. February sucks also and so does March because I scan after a year. I always get freaked out. Drive someone insane. I can't wait to get him to agree to my shelter dog. I want one badly. Need the companionship and interaction. I want a bigger lap dog. I'm desperate for a dog.
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Mel, I’m glad you got to see your son and he’s feeling better. I know how much you love both your children. The fact that you want a dog makes me happy. I hope your husband comes around. I’ve seen videos where the person who doesn’t want the dog ends up falling head over heels. I hope he gives in.
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