My Husband, My Life, My Love, My Family, My Cancer
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Mae, I hope the plan is to go after the tiny but new brain mets. Clean CT and bone scans is great news. Keep on livin life!
Mara, Wow, stricter lockdown coming for you. That’s good that you won’t be too hampered by it. The lack of vaccine for you in Canada is disturbing. My state is slowing down with vaccinations, I just heard, due to greater supply and waning interest. It sounds like there are a lot of people not planning to take it. Maybe some of our supply can be sent to Canada. It benefits all of us if other countries have the vaccine too.
Candy, I’m so glad your report said no cancer in your shoulder. But now you’ll have to hear more about the injections and PT. It seems like this imaging is a step forward in trying to address your pain, I hope things keep moving for you. Pocket duty for your Monday appt!
So, I get to spend an hour and a half in the dentist’s chair on Monday. Not looking forward to it. I had a corner break off a molar and my dentist says it needs a crown. I know they’re pretty common but it’s a first for me. I leave with a temporary crown and go back when the permanent one is ready.
Hello to everyone. 🌷🌷🌷
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Hubs had another cardio version, which was successful and he was discharged from the hospital. The imbalances and falling were due to toxicity from one of his seizure meds. Fingers crossed that this cardio version lasts more than a couple days. Thank you for all your kind thoughts during this craziness
Requests for pocket duty on Monday. Have bone and CT scans.
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Mel I am so sorry, I've lost a couple of dogs and loving a dog and losing a dog is an emotion that is just too big for one word. Sending you hugs.
Candy I share your frustration. I am so glad you are advocating for yourself. It is such a broken system we have to navigate.
I am doing better slowly. I had to take a leave from work and am still navigating the paperwork on that with my doctors. It's only a few weeks hopefully. I've lost 10 pounds in two weeks not having an appetite or on the flip side, not being able to keep anything down. I think that is where most of this weakness is coming from. I'm almost a week now off of the antibiotics and things are slowly normalizing so I'm hoping it was just a bad reaction to the meds. I see my PCP Monday and my MO on the 27th to follow up. Today I had a little more appetite and kept almost everything down and even tolerated a grilled cheese sandwich with my soup for dinner. I decided Mara's system of counting steps as opposed to miles made a lot of sense. Today I was only able to do 3300 in my loop around the block and it still takes quite a bit out of me but it was almost 80 degrees out and too beautiful to sit inside.
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Thank you Rosie, just so frustrating that the lockdown should have just been done earlier. The variants are worse too.
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Mel, thoughts with you on the loss of your beloved pup.
Goldens - good to hear your DH improving and hope it continues.
Candy - sounds like a good scan and having had years of shoulder problems myself, the jab and PT should help.
Mara and others in Canada - bit of a shocker for you all re Covid cases etc. Even made the news here. We’ve had pretty strict lockdown after lockdown, but also a rapid vaccine roll out. We’re gradually easing out now. Kids will all be back in school as of Monday and we’re allowed to travel outside our local area in Scotland but not stay overnight yet. Shops are not fully open nor are hospitality/ leisure. But I get my haircut on Tuesday after 4 months!
This morning I had my second Covid vaccination. Done with military precision and organisation at my GP surgery...where the most vulnerable have to go. The masses go to big centres specially set up. Turned out the doc who did my jab was the GP who got me referred 3 years ago...haven’t seen him since as I now deal mainly with the Beatson. Bless him.... after we said hello’s not seen you for ages, he said lots going on for you, how ARE you? And we parted with him saying, don’t feel like you can’t come in a talk to us if you need to chat things through.
Now waiting on CT scan report from last Thursday. Anxious as first one since starting Capecitabine.
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Goldens- Thank goodness they are getting DH fixed up. Hope things go better for him now.
Intolight- If you are reading here, how did your scan go this last week?
Elderberry- How about your PET?
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Karen, I think our problem was the lockdowns in my province were a patchwork. There were less restrictions in some places, more idiots having parties or protesting masks etc. I think had we done a severe lockdown when they say the numbers going up in December, we would not need to introduce further measures as giving police powers to stop anyone and ask where they are going and their address. I am worried about racial profiling in this case. Not sure. We just need more vaccines. I need our provincial and federal governments to get real and I don't care if they need to beg, we are willing to use AstraZeneca, it would be good if the US does not want them, to loan them out to get our vaccinations started to reduce ICU and deaths. That would go a long way for us. Me, I am just going to grocery, takeout and walking outside. I am always masked except for the walk and double masked when on the bus or in the store. I still have a lot of hand sanitizer and rubbing alcohol to spray stuff off when I get home.
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This weekend is the LBBC (Living Beyond Breast Cancer) groups annual conference. It is free online with guest speakers on MBC. So today and tomorrow I am going to listen to discussion on "bone mets" and "upcoming research on MBC", and "managing side effects of new treatment". Also, I have to get my thoughts/notes in order for my Monday MO appt--- discussing next step since liver mets increased on March scans.
Seems my life revolves around MBC. I should have some other interests, but seems I don't. I called a friend last night. He works full time, has family things going on, and is a car guy, so working on his cars. He asked what I did this last week. Hum,,, went to ortho doc about shoulder, the upcoming conference this weekend, my MO appt Monday. See, all medical stuff. But that is my life now. No work talk. Not much with family. He asked me if we could get together after he gets his 2nd Covid shot. I said depends on plan for next treatment--- if Verzenio, for instance, could have diarrhea issues. Or could have side effects of the new med. Or what if we decide to do an ablation of the liver met. Just do not know.
Kind of weird anymore, but this is my life.
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my life revolves around MBC as well candy. I agree with that so much.
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candy: waiting anxiously for my PET results. It is now the weekend so I am hoping Dr. S calls me Monday. Was it you to whom I mentioned radial shock therapy? It was like a miracle for my calcific tendinopathy in my shoulder. If it works for you it would be one thing out of the way. Medical appointments, SE from meds, chronic anxiety --- such is our lives.
Goldens: relief that your DH's issues were from meds. That should be rectifiable. My husband has had several cardioversions over the years. I've had one a few years ago. I have never had another issue (fingers crossed) and my husband's cardioversions usually last for a few years. I hope your husband will do well.
mara: Ontario is a mess. BC is stumbling along. Biden has offered 1.5M doses of the A-Z vaccine. Had I not had the Pfizer I am pretty sure I might have risked a rare blood clot rather than risk Covid. I also take Eliquis so I have the naive notion it would protect me from a dangerous clot. I am still not seeing friends and masked up to shop. Even when there was dining in allowed I wasn't doing that. I won't go anywhere near a bus. I used to view them as vectors of disease even before the pandemic but I did take public transit when I needed to go to downtown Vancouver. There is a fabric/notions store on Hastings that I really really miss going to. It was one bus with a stop about about a block from where I live, express and stopped a block or so from Dressew. I could usually go there, shop and get home again on the same bus ticket -- senior rate. I miss that!
waiting to hear from runor, Dutchiris, Intolight, ilowen, BevJen, Karen ---- who have I missed? The Waiting Game. UGH
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Elderberry- I don't remember talking about radial shock therapy. Sounds like they want to do a steroid injection and therapy for me. Will see about the injection with my low white counts. And hope I can do PT with the Covid situation still going on.
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Elderberry, I hear you on that, Ontario is a mess for many reasons, lockdown like we have now should have been done when we started climbing. I don't believe the provincial gov't is rolling out the vaccines they do have properly. Essential workers should be getting them right now so it does not spread in stores or from delivery people. Health care is getting theirs. I also think the lockdown should have been province wide from the start. If they could also get a release of some of the 20 million Astra Zeneca that are just sitting around in the US since it is not currently being used due to potential blood clots. The risk of everything falling apart in the hospitals is much higher and I would take the vaccine if available. We just need to get the help from the US since it is not being used according to news from a couple days ago.
I don't mind the lockdown myself, it will shrink numbers some with more vaccines going once we get more.
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candy: must have been another met sister with shoulder problems. I couldn't lift my arm at all. I would practically scream pulling something over my head. I had PT with zero results. I was diagnosed with calcific tendinopathy and the radial shock therapy sent these pulses through the muscles that broke up all the calcium deposits. RELIEF - no shots, no PT. Much will depend on what is causing your pain.
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Just popping in from the hospital -- been posting a little bit on bone mets. Surgery Monday -- R hip replacement, L will get pin shortly. Mets in head of femur -- had no idea.
Thinking of all of you.
Bev
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Golden - on board for pocket duty.
Emac - Hope you continue to see gradual improvement. Positive outcomes gratefully accepted.
Candy - Cancer is like ammonia. It displaced oxygen. You can be in surroundings that look totally the same but suddenly, you can't breathe. That is what cancer does, everything looks the same, everyone carries on as normal, and you lay there in all the normal looking world and gasp for air. It's the most mind boggling thing.
Elderberry - sorry you are riding the Merry-wait-around. The anxiety is brutal.
BevJen - thinking of you on Monday.
Mel - you sound sad. I am sorry to see this. I stand by and offer silent (mainly useless) supportive company.
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Wow Bev, wishing you a speedy recovery.
Candy...hoping an injection does trick for you shoulder.
Elderberry... still waiting. I'm waiting for test results for ESR1 and PIK3 before I know my next treatment. I was told it will take a week or 2. My MO also requested receptors be tested on the MBC tumors from the ovaries. Maybe I'll here about sooner?
I am so tired. I mostly sleep and eat. Maybe I'll make myself do more tomorrow?
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Mel, I will be taking you into my arms and squeezing you tight. I am still sorry about your dog and the heartbreak it is causing you. So painful and all we can do is just get though it but it is never easy nor is there a timetable to know you can remember your family member with fondness and not so much sadness in those memories. I hope that time is kind and allows that sometime in the near future.
Well Elderberry, you said Ontario was a mess with COVID, the latest news says premier Ford is taking 25 percent of London's vaccines to give to the Toronto area even though our Medical officer of Health considers us a hot area. We don't have enough either. Go figure. I just goes from bad to worse. Thank goodness I don't work with the public in essential services.
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I hate that we have to struggle so often, with pain, anxiety, being stuck in hospital, depression, all of it. Sending my kick ass girl gang my best vibes.
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Candy, I'd like to share something I experienced with shoulder pain. Several years ago (pre COVID, pre Stage IV) I was having severe shoulder pain. I could not lift my left arm to wash my hair and just hanging up the bath towels was excruciating. I never went to the doctor, but just dealt with it.
Around that time, my cousin told me about an eating plan and said that it really helped her with some digestive issues and that it also helped her lose weight (she was never super heavy). I thought, why not? I wouldn't mind losing a few pounds. Anyway, the book she had read was called The Plant Paradox by Dr. Steven Gundry. I got the book and read it. I was intrigued, although I felt like the guy was a little "snake oily" with trying to sell his special supplements.
His basic plan is to avoid lectins which are in wheat, night shade vegetable and I forget what else. I tried this "diet" (I hate that word) and I kid you not, my shoulder pain was GONE in three days. It was shocking! I didn't stick with the eating plan forever, and now eat pretty much what ever I want, but I just thought I'd mention it.
Again, I'm not saying this is the answer for you, and to be honest, I find him a little too slick for my taste, but his eating plan did seem to work for my shoulder pain. I've started eating popcorn again and I think my shoulder is protesting a bit (corn is on the "off" list), but it's not hurting enough to give up popcorn just yet.
My apologies if I offended anyone by "advertising" (I'll remove my post) or if you're a patient or fan of Dr. Gundry. Just my experience.
Now I'm off to have some popcorn and a glass of merlot. (I'm partial to Skinny Girl popcorn - my son calls it "Skinny Bitch - haha.)
Carol
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Love the idea of being in the Kick Ass Girl Gang Mae! 😂.
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Well Petscan for me tomorrow to see if the navelbine is doing its job, I certainly hope so, I'd hate to be feeling this miserable for nothing.
My thoughts are with everyone suffering from pain, languishing in the hospital waiting and for those at home waiting for results and also waiting for surgery dates.
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KittyKat, I will be in your pocket as you find out what the navelbine is doing for you
I have a scan of my lungs. The last CT showed some osseous glass and inflammation as well which I do not notice. Not too worried but MO just wants to be sure there is nothing else going on. Hopefully will not yield any issues but if it does yield BC mets or lung cancer, I will have to make some tough decisions as being on my own, not sure I would want major intervention like chemo or anything. I have no children or spouse and older brother would be alright in end.
Not sure what brought that on but I do have some ideas about what I would be willing and not willing to do if I progressed. My family knows too.
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Thanks Mara, I hope so too, not sure where I go after this if its not working. Luckily, like you, I can still maintain my own house.
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Hello ladies.
Sounds like we are all in for pocket duty where needed. I have my "list" ready, but sounds like you all have it taken care of. Love you all. You are the best.
Here goes-- if I miss anyone then chime in---
Kitty- PET on Monday
mara- scan to check lungs
Snow-drop-- MRI and results
NicoleRod- MO Monday
AlabamaDee- scans Monday
Karen- awaiting CT results
Intolight- scan results
Elderberry- PET results
BevJen-- surgery and in hospital now
runor- D&C on Tuesday
dutchiris- results to determine treatment
Goldens- bone scan and CT Monday
me (Candy)- MO Monday to discuss liver tumor boards recommendations from the increase in liver mets size in March scans. Also discuss the Guardant results taken last month. Essentially decide next step since the progression. Also, discuss the shoulder issue (review the MRI to verify no cancer in shoulder).
Geez lots going on with us all. I hope I got it all.
Sunshine- I don't know anything about the avoiding lectins diet. Like most people I guess, I get in a rut and eat the same things all the time. Probably not good for me foods--- too much sugar, not enough fruits and veggies. Thanks for your post. Maybe diet would help. IDK. But I think this is mechanical. Rotator cuff and arthritis with bone spurs.
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Candy, thank you for keeping track of the people getting scans. I am in everybody's pocket and I will refer to your list to keep up.
Not doing much today. I woke up before 5 am but have been in bed between 9 and 10 pm of late so that is why. That will work in my favour as I have to leave to walk to the hospital at 7am. Nice part is that I will likely not be there that long and don't have any contrast to take which is fine by me. I may figure out a way to take the bus to a grocery store at opening hour. We will see.
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Good luck to all of you who have tests, scans, appointments, and procedures this week. It looks like a busy week. I made some yummy blueberry muffins and will share with anyone who like them.
My governor dropped the state mask mandate effective last Friday. I just don’t understand the timing. Our numbers are up, and NH was added to the list of hotspots last week. Individual towns and businesses can still require masks, but they won’t have the clout of a state mandate to back them up. I thought I would have more freedom to get out and shop this summer, but I don’t know now. (DH and I are both vaccinated.) perhaps I will continue to have the same exciting outings that I have had for the past year. This week was particularly exciting - two outings - one to MO’s office for blood tests, exam, and chemo, and a second outing for CT scan. Wow, right?
Hugs and prayers from, Lynne
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Candy...I also sending a great big thank to you for keep track of people's upcoming scans, appointments, and pending test results. I appreciate the consolidated pocket duty itinerary
We are going to need a lot of snacks.0 -
Thanks from Me too Candy!
Mara, weighing up your options is a good thing. All these treatments, as we well know, affect us in different ways. Don’t discount anything until you’ve tried it or at least researched the particular options for you. For some of us chemo hasn’t been too bad and QoL is still good - when they get it right.
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Candy - thanks for listing all the pocket duty needs. Count me in for duty. Praying for positive outcomes for all
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Good morning, everyone. I have received my bone scan and CT results. Everything looks great with shrinkage all around. Yay!
In pockets for everyone having appointments, scans and procedures. Candy, thanks for keeping track of all the goings-on.
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