My Husband, My Life, My Love, My Family, My Cancer
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Thanks Mel. Yeah, getting a relationship built and then they leave would be hard. My first MO was great. He was smart and compassionate. And he was the one that sat and held my hand as he delivered the Stage 4 news. When he moved that was hard. Now, since I moved to a new cancer clinic I miss the staff at the old one. Going in for Lupron and Xgeva shots I got to know the infusion nurses. I miss them. The only "cancer" meds I am on are the Ibrance and Letrozole. I am on Pepcid and a BP med, but those are handled by my PCP. And as far as working with my family, I go to appts alone so my family is not really involved (yet, and who knows in the future).
Shetland- I did mention the pain. I feel I hogged the appt time, felt like I was rambling. They didn't ask about SE's or pain, I just told them. I said I use Prune juice for the BM issues. And told them of the untreated rheumatoid arthritis and the low back/disc issues. And the pains I have. They mentioned trying yoga (You Tube videos since with Covid I don't feel comfortable going to the YMCA). The one staff member who I don't know what her title is, said she would send a RX to my pharmacy for a muscle relaxer-- Zanaflex. And she said to try OTC lidocaine patches on my low back. That is the recommendations they had for the pain. They did say to continue with the counselor for the 8-10 free sessions. Then... they didn't say.
I was up at 3am and couldn't sleep. I wrote down some questions, and I am going to call the Palliative Care office today. I just feel confused on what their role is. Especially for right now.
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Mae I'm in your pocket for the back MRI. I hope that the "when" is not now or ever. I'll bring my new edible milk chocolate bar.
Candy about your friend with COVID is he the "one?" I remember you always writing about a friend who was socializing while you were isolating. I know Covid is on the rise yesterday I heard of 3 people that I know who have it this week. My grandkids school secretary and her family-c0vid, my husbands friend, my friends ex husband-(he said that's why he can't pay child support this month)-who knows if he has it for real. I do think people are stupid with this pandemic. I was invited to dinner at an old friends home. I asked if we would eat outside and was considering going until she told me that her family is divided on whether or not they think it's a hoax. No thank you, I'll see you guys another time. Your palliative care team sounds like they're gathering information to make a plan for you. I know you are an expert at advocating for yourself so you will get the best of what they are offering.
Booboo I remember your piqray se's with the pneumonia and everything. I definitely understand QOL. I'll be nibbling on those reeses.
Bliss how does your husband quarantine? Is he isolating from you too inside the house? I also found the queso i bought from trader joes to be too spicy. I do love the cheese though. Sometimes I use bruschetta and then sprinkle some cheddar and melt it.
Moth sorry to hear about the new mets but hopefully the treatment will take care of them. Do you know what the plan is yet?
Mara your motto one box at a time is definitely a survival mode. It requires lots of focus and patience.
Golden great news on your treatments- I'm hopeful that your ablation will work. I really feel like I might have progression or really bad arthritis because my back sciatic nerve etc. still hurt and my last treatment was Sept. 9th. We'll know soon enough.
Shetland as professionals you would think that they would understand that some patients minimize their symptoms because admitting the level of pain is acknowledging cancer which sucks.
Mel I'm sorry Tag is still breaking your heart. I'm happy you have those memories.
My two daughters father in law passed away last night after a four month battle with liver and lung cancer. (Both married to brothers) another funeral we will miss. My daughter and the children are on their way to NY.
Waving hello to elder, rosie, runor, sondra f, anyone and everyone I missed.
Tanya
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Mae, in your pocket for the MRI eating all the peanut butter cups.
Tanya, you are right, one box at a time works or one thing at a time.
Candy, I agree with SP in that some of what you said appeared to minimize what you are going through.
Just doing some short walks in between surveys and laundry and not much else.
In any pockets where I am needed. Hope all have a decent day.
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Tanya- Yes, that is the friend I post about that goes to car shows, eats out every day at his favorite restaurant, goes to in-person church services, etc. I am checking in with him on how he is doing with the Covid. He is doing good. Said today he is feeling great. His dad has a productive cough they are watching.
So I called the Palliative Care office and asked some more questions. They are a "small department" she says. The 3 ladies I met with was an Outpatient Palliative Care doctor, a "Fellow" doctor, and a Social Worker. The doctor and the Social Worker will be my team, the "Fellow" will be there a year to learn. They have a Chaplain and other doctors that work more on the In-Patient side of things. They do not have acupuncture, yoga, meditation, etc. They do not offer counseling services. So after my 8-10 sessions then nothing, I guess. She said to think of the doctor like a PCP-- observes all issues and coordinates to help with things to help QOL. Plan right now is to meet every 3 months or so--- my next scan is Dec 21 and Palliative Care appt is Jan 5. If progression and treatment changes, then we will have more to discuss. If still stable, then more a check-in visit, I guess. Coast until they are needed more.
I am glad I am established with them. For the future.
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Nurse called clean scan thank God.
Thanks for all of your support
Tanya
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Tanya- Woohoo!!!!! Good news for a Friday afternoon.
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Tanya,
Wonderful news. Now go and enjoy your weekend!!!!
Bev
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Great news Tanya!
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Wonderful newsTanya!
Mae- Hope your MRI results were good
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congrats Tanya 🎉
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Great news Tanya!! 😁👍😁👍😁
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Tanya,
Time to celebrate. Tell your DH to buy you those Reece’s!!!!!!
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thank goodness Tanya.
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HAPPY HALLOWEEN to those who celebrate it !!!!!! This is my favorite Holiday. Wish there were no Covid. My church is continuing their plans for a cookout tonight--- I firmly disagree with their plans with lots of Covid in our area. But, if there was no Covid, sounds like fun. A bonfire. Good bonfire food--- hot dogs, hamburgers, smores, halloween candy. Going to be sunny and 60 today with tonight being clear and cool. And it is time change so another hour of sleep--- makes one feel they have more time to party.
But.... this year is different.
I went to Dollar store early this morning-- no crowd. I bought some hot dogs (haven't eaten one since probably last falls cookout, or maybe the year before). Bought some chips. And a bag of halloween candy. I am going to have a party of my own. Though no bonfire. Maybe turn off the house lights and light some candles. Put in a DVD of a good movie.
Not the same, with being alone. But it is what it is.
I hope next year is better, and I am well enough to enjoy a cookout. Others can think of the time where there is an end to Covid, but with MBC we wonder how we will feel at that time.
HAPPY HALLOWEEN!!!!!!!!!!!
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Candy, Happy Halloween to you, too. It is unfortunate that there is the gray cloud of COVID hanging over your favorite holiday, but it sounds like you are making the best of it anyway. Enjoy your celebration. I will be thinking about you tonight, so you will have my virtual presence there with you. I don't know if that's a good thing, but there you have it. My town is allowing trick or treating, but I don't expect many people here. We don't get many people during a good year, so this year will have a sad turnout. I have put candy bars into Halloween bags and will place the bags on a table outside at the bottom of the stairs. If someone takes multiple bags, that will be okay. My dh and I have been isolating ourselves since we are both considered high risk for COVID. I haven't been in a store since late February. My MO/chemo spots are my field trips. Lol. At any rate, I will peak out the window to see the kids in their costumes. I really enjoy seeing them.
Tanya, congratulations on the great scan results. I saw the picture of you getting ready for a ride on a jet ski. You daredevil, you! I love reading about how you are enjoying your life.
Mara, I also like reading your posts. You don’t let MBC hold you back, and I admire you. I have just started daily walks again. I am trying to build up to 3 miles a day, but I am not there yet. We don’t have sidewalks or stores or public transportation near me.You are amazing.
Mae , I hope you receive positive results for your scan. I will check back to read about it once you post.
Hugs and prayers from, lynne
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What a relief Tanya! So happy the clinic nurse took the time to let you know asap.
Mae, hope you get your results soon & they're super squeaky clean.Hey, on Friday I participated for the second time in a zoom metastatic support group: 1 facilitator and various pts. It was so good. They're every 2 weeks usually. So nice to talk. And we had serious talks but also we laughed and it was just ...good.
The Canadian channel that plays the Hallmark Christmas movies starts with a premiere tonight (you US peeps started last week) so I'm looking forward to that. I have a bunch of presents to wrap. I've been stacking them on my desk and they're gradually taking over my working space so I really need to at least move them to the closet but I think I want to just get the wrapping started. It always takes way longer than I think it will.
I hope halloween is quiet. We're turning off our lights & not handing out candy - I can't imagine many trick & treaters will be out anyway.
My dog is ok with fireworks and thunder far away but people were setting off screeecher type things close to us last night when I was walking and she got very scared & wanted to run home. Private fireworks are being slowly banned in all the municipalities here. When I was doing dog rescue the days after halloween sucked as we would have teams of volunteers and shelters workers all out looking for dogs and cats that got scared and bolted & so many were never found.....
Hugs everyone, enjoy the weekend. Anyone doing NaNoWriMo? I've done it before & briefly considered it but I think I'd rather just do my own thing right now.
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Thank you 50s girl. I am debating a long walk today or tomorrow. Don't really care if it is rainy. If I do not walk today, I will pull out my cubii elliptical and pedal while I click videos to make money. Not sure what I want to do. I at least have to get milk at the grocery store. I like my fiber one honey flakes cereal but I had been eating them mixed in melty peanut butter of late and I think that is too big a calorie load for me. I need vitamin D from the milk as well and the vitamin makes me light headed for whatever reason.
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I’m doing what I always do tonight, turn out the lights and watch the original Halloween.
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When I am gone so much happens here that I feel negligent for not being on top of everything. I do try and keep up but have to admit that it has gotten entirely away from me. There are ups, there are downs and I cheer or weep as the situation requires. But I do check in because the names here, the people, they are grounding and a community that was vital, VITAL and remains so.
I am busy doing god knows what. Less time at the computer checking on here. But as mamm time draws near I feel my tension and worry rise. I have my mamm some time in December and I'm not sure how it got pushed to that month but I wish it wasn't. I really hate even thinking about breast cancer bullshit over the holidays. It's a trigger, receiving the first call saying , 'uh, come back for another look because there's something weird in your boob', in December. Then the following year I was going through it all again in December when they thought maybe there was still cancer in my boob so...enough with the Christmas crisis already. Christmas is not my best time of year anyway, THIS doesn't help! So, that's what's on my mind these days.
Hi to everyone in the living room. Stay well and take it easy on those mini chocolate bars!0 -
Rock on, Mae - Ill be watching The Fog. Side note: Friday I started going through the four or five boxes labelled "office" laying around the house. Stuff like old bank statements, random paper, etc. The one I grabbed had a lot of "memories" stuff, like old concert tickets. I found the ticket from Halloween 2015 when we went to see Alan Howarth play in an old chapel the themes he had composed with John Carpenter. Five years!! I could swear it was more like three. The next year we got to see Carpenter himself play, on Halloween, aaaaalllll of the tunes. The cheer that went up when the visuals flashed Adrienne Barbeau!
It made me feel a little sad to remember those great times and how it was "before cancer". Well, 2016 was during my L5/S1 disc hernia, but 2015 feels like the last really solid year, before injury and illness and stress and the world being such a mess.
Nothing happening here tonight other than someone a few yards over lit off some firecrackers a few minutes ago. This morning the news of a potential November lockdown came through, so I had to quick run to the larger town to return a box too big for our local post office and pick up some things to wrap Christmas gifts to send home. A new lockdown doesn't change too much for us anyway.
Glad you got some good news Tanya!
Hello to all!
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Good one Mae. I was going to watch a DVD, but then I realized most of my movies are VHS. I know, I am not too techy. I guess I don't watch too many movies. So I will see what is showing this evening on the TV. (No Netflix or those things either, just expensive Cable). But still will turn down the lights and hope something good with channel surfing.
Yes, Sondra, I think of my life events as "precancer" and "postcancer". Sad.
Windows open--- sunny and in the 60's. Nice to bring fresh air into the house. My cat likes it too.
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me too Mae! Nothing like the originals!
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Just finished putting up some decorations and decorating my 6 foot long tube. We are going to socially distance but still give away candy on our block. It's a beautiful day here so I think we will get some kids. Happy Halloween!
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My neighbourhood does have a lot of houses, never have been out to see how many kids come around. My apartments are secured entry so nothing here. I stopped giving out candy once there were no smaller kids out trick or treating. My old condo did not used to get many kids at all.
Chicagoan, the chute idea is good for social distancing and giving out candy for sure.
Runor, I did see you have a mamm coming up that is causing you anxiety, I will take up residence in your pocket until you both have the mamm and of course get results.
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nice to see you Runor!!! In your pocket for mammo time. Itwill be ok.
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Thanks to all who were in my pocket and well wishers.
Phew!
We ordered a tent and will pitch it at the beach and watch the sunset and then if I’m exhausted or whatever I can chill while he fishes or whatever. He goes out 5xs a week at sunrise, by himself and I’ve been sitting home bc of pain, tired etc. Booboo I will eat Reese’s pieces and think of you dear friend.Candy and Sondra F it’s amazing how cancer pre cancer life compares. I try not to think about it but it always comes up in my thoughts.
Lynne it’s great catching up with you. Enjoy your Halloween night with candy! Candy 678. We don’t expect anyone bc Covid is rising in our area.
Chicagoan that’s a cute idea for giving out treats.
Mara and Lynne my exercise has been reduced bc it’s gotten a bit cooler here (was swimming) and my back is painful walking. Today though I danced on zoom with my mom sister grandkids niece for 20 minutes. I paid for all those moves very shortly thereafter but I had a blast.
Moth your support group sounds great. When Booboo and I met we talked cried laughed for a few hours. It’s just a holistic connection, so happy you have that
Mel have they cancelled socializing in your area? It seems rural and quaint.
Have a good night all
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We had exactly 3 trick or treaters tonight, all in one group. My neighborhood is cluster homes and very few kids, so not really surprising. DH really enjoys Halloween and was disappointed not to have any more, but we've never had many in the 4 years we've been here. He rigged one guy above our deck, then we thought maybe another one wouldn't hurt to keep him company.
Runor, pocket duty for your mammo. Hope all is well. I have one on Thursday but for some reason not really nervous about it. It was scheduled by my surgeon after my lumpectomy last year, and MO said we'll use it as a baseline but normally just go on my what my CTs show.
Enjoy the movies for those with special plans!
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I had over 100 trick or treaters! My little candy chute worked great. It was so nice to see the kids having fun and getting to enjoy a bit of normalcy. (Of course that means I still have about 40 pieces of candy left-not what I need but I'll enjoy it!).
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I know you know it ok to live your life. We will be here for you when you get back. We all have our story and your chapters are among ours. We will see you then :-)
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Trick or treat Chicagoan
Tanya, the dance party sounds like a lot of fun. When I have a really sore back, I usually pedal my cubii jr elliptical to get warmed up before a longer walk in my case and I always take advil with breakfast when I am planning a longer one. I did my longer 11km one today, just to a dollar store but I did do the warm up of muscles as I have a few places that are normally painful.
I really did not observe Halloween in any fashion this year, was too busy watching TV and writing a ton of surveys. I almost have enough for another good sized grocery shop.
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