My Husband, My Life, My Love, My Family, My Cancer
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I am totally on the other side of the country from you Seattle ladies. Those trolls look massive and are pretty cool looking. In my town we have ceramic horses, they are all over town. Different designs. Those trolls look like they took some work to put together. Thanks for sharing them.
Sondra~ pedal your little heart out. Sounds like a good idea, I hope you get the benefits out of it that you need.
hope everyone has a good day today. It’s finally not raining. But it’s definitely fall outside.
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I used Fido for internet and they are the ones who want the modem back. Not going to bother returning it, too much of a pain for me to find and unplug the cord which is taped up so cat does not step on and turn off the power bar. I will simply pay extra on bills going forward as needed. The account is closed as the charge is only 54 dollars instead of 76 showing me that I was not charged the full amount. Glad to be rid of them.
Paratransit coming today to take me to my Herceptin, supposed to pick me up after. My body also told me to sleep lightly on the couch instead of bed for fear of sleeping in so am tired today. Trying to counter the I'm tired routine in my head, usually listen to music with earbuds or in my head. Had some chopped beans, corn and cheese, microwaved them and added steak and a bit of chicken powder. Took usual digestive enzyme and immodium. I am adding immodium in diet for the first few days after Herceptin as it seems to want to cause the big D, not interested in that.
Hope everyone has a good day, in pockets for those who need me.
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I, too, despise those commercials. Talk about false advertising! And on top of that, think of the cost to air those things. There should be a federal law to prohibit advertising of cancer meds and requiring manufacturers to put those funds into financial assistance for patients. If I wasn’t so damn tired, I’d write my Congress person!
I’ve been doing lots of papercrafting. Will get around to posting some photos. Love the painting!Sending thoughts of comfort to all my sisters. Mel - how is your sister?
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Goldens~ always nice to see you. My sister is still fighting. She radiated some cancer and it did ok, but her scans showed new growth. So they are discussing. What treatment she should go on to since she had the heavy chemo already. I really appreciate you asking. That is very special. I hope everyone is ok in your world. I am glad you’re here. Enjoy your crafting.
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Sondra-The underdesk mini-bike sounds like a good idea. Don't worry about starting at the bottom. I've had to do that a couple of times in the past 7 years but the main thing is to start and do what you can. It is definitely possible to regain strength and stamina if we put in the work. Have fun pedaling!
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@aprilgirl1 the trolls are awesome haha. There is a town here with really cool metal sculptures all over. Next time I'm over there I will take pictures.
Thanks all, I'm glad you enjoy the pictures and painting.
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I was supposed to have my scans tomorrow and I tested positive for COVID this morning…😐️ so now everything is pushed into next week. Waiting to hear back from the MO and hopefully get Paxlovid. Could really use a vacation right about now.
@aprilgirl1 Those trolls look awesome!
@micmel I am sorry to hear about your sister. I hope they find a treatment that works for her and isn't too harsh.
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@keris113 So sorry to read you have Covid. Praying you get the Paxlovid , have a light case, and some good rest.
@sondraf Those underdesk bikes work great. We got rid of ours when we downsized a few years ago, but I have been thinking of getting another one. Let us know how you do!
All our Seattle girls, I am flying into Seattle this weekend before boarding for a cruise. Looks like rain the whole time. Any tips?
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Yay so glad to see the sun out today. It motivates me to get some things done to get ready for my trip to Florida next week. DD is coming over today to cut DH’s hair💇♂️. I have an appt at her salon on Friday for my hair 💇♀️ and a pedicure 🥰.
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@intolight , no tips, just bring layers and lots of rain gear. Rainpants, waterproof shoes, waterproof jacket, gloves, hat, umbrella. It looks like the weather has turned for the year.
My partner getting over Covid and it looks like I escaped it. Yay.0 -
I rarely post, but I just wanted to throw my two cents in for anyone who might be reading along. I, too, think those drug commercials are stupid. Who is going to make treatment decisions for something like metastatic cancer based on a television commercial? We have oncologists for that.
That being said, not everyone's experience with medications is the same. I would hate for someone newly diagnosed to think that MBC treatment always means extreme fatigue and always severely limits your activities. I've been on Kisqali for 18 months and I actually do run, 4-5 days a week. I ran a half-marathon last month. I say this not to toot my own horn, but just to say that an active life may be possible for those on these type of medications and to give encouragement to those who may just be starting treatment. Everyone’s bodies react differently to the treatments we are prescribed.
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Mozuke, glad you are a able to do all that activity.
I got out of Herceptin about 90 minutes before bus trip home on paratransit. Going to walk again to the other side of the hospital and come back to pickup point.
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weninwi, I set up my spreadsheet with the dates across the top and the test names (component) down the side. I made another column next to the test name with the range. I have a tab for CBC and another for CMP. I include the tumor marker results on the CBC sheet.
I like to highlight the tests that are problematic for me like WBC and Absolute Neutrophils. Then, I color code the results that are high with a red tint and those that are low with a blue tint. I freeze-frame the sheet so that the test names and the dates are always visible.
This process gives me a tiny sense of control in my crazy Stage IV life. It’s a bit of work setting it up in the beginning (as you know) but then filling in the new info each time is very satisfying, and I like seeing at a glance how my numbers are doing. Occasionally, Scripps will change the values, so I change mine accordingly.
Candy, I have a love-hate thing with those cancer drug commercials. Especially when they mention all the possible side effects, which could lead to death. I’m not going to be jogging anytime soon. I get how sitting in a chair at a bake sale can be exhausting.
Shanagirl, my husband loves art. He and my dad design art projects together and he likes to paint abstract paintings. I don’t have the creative mind or even a desire to have a creative mind. My crocheting has been my current favorite thing to do. My knitting is feeling neglected.
Sondra, seriously about the fatigue not being a problem??? In whose world? Certainly not mine. And how can one be nauseated and hungry at the same time? I CAN!
Mara, I’m sorry you’re still dealing with Internet issues, even if it’s “just” trying to close an account. Sheesh!
My EEG for tomorrow got rescheduled. My MRI of my C-spine came back stable (YAY) so I cancelled my appointment with the neurosurgeon. That call only took 45 minutes to get through and then two minutes to cancel the appointment.
I have a “phone date” with a former classmate today. He was actually a year ahead of me in the academy (church school) we both attended. He took me to the Junior-Senior banquet. (We didn’t have dances, so we had “banquets” instead.) Nice guy. He’s now married to Kevin. It will be fun to catch up with him. He said he read my blog and wanted to talk with me.
Waving hi to mel, mae, intolight, cookie, mkestrel (lovely painting, by the way), aj, bellelove70, aprilgirl, goldens, Chicagoan, keris113, mozuke1, and anyone I’ve missed. What a great group we are!
Love to all,
Carol
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Well, got home finally. I had to get on at the next street over and same when I got home. I walked on the road, apologizing to workers but they thought the lumpy road was still the safest place to walk. I enjoyed the Paratransit rides, getting a lift up and lift down. Did wind up waiting an hour and a half after done Herceptin so did a couple of long distance walks from one end of the hospital to the other, was just over 5500 steps. People in the cancer clinic and the paratransit were quite talkative which I did not mind today, keeps me from jabbering on with nurses who need to look after other patients. All in all, Paratransit is a good service, walking in the hospital was good and I am able to walk in the lumpy road also.
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I would agree the commercials don't tell the real picture but they are trying to sell a product and this life would be a hard sell, they have to know that. Seems like false advertising though. When I was bone only mets I feel like I did reasonably well. I had fatigue but was working and going to the gym and able to garden. These progressions have been another story. I would like to go back to that old MBC life. I'm not sure I trust the Piqray and I won't mind if they can't renew the grant that allows me to afford it. My blood sugars are so high I'm afraid I'm causing more problems and I am not convinced it's working. We'll have to see what the scans say. I figure the Taxol is flexing where the Piqray might fail.
This week has been a hard one. I feel a little like a wilted plant. Usually after my Thursday Taxol infusion I do okay for a day or so then have a hard day where I'm fairly sick and slowly start to rebound. This past week the sickness hit Saturday and has remained. I'm so weak I can hardly get off the couch or a chair (or the toilet). Lots of vomiting and diarrhea. I got a call from my MOs office today to tell my my potassium labs are low so I'm waiting to see if I am going to have to go in for fluids. I'm just having a down week. I questioned several times whether I can keep going. Tomorrow will be 8 of 12. This has been the hardest treatment so far for me. 4 more weeks after this one. I'm just telling myself I can get through it.
We got a little rain here in Southern Oregon but not nearly as much as we needed. The atmospheric river that hit was mostly along the coast and petered out by the time it got here. Still, the cooler temperatures and a little rain was a welcome break from the smoke and the heat. It's a perfectly beautiful Fall day today.
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@mozuke1 Hi😊You inspire me that you run. That’s wonderful. I used to do all that in my 40’s & 50s. Run and ride and jump horses. Then came the hemorrhagic stroke, survived that, the came breast cancer stage IIIA in 2009, survived that, then came knee replacements 1 & 2 5 years apart, then came stage IV to to the bone this past January. surprise, surprise. Now i’ms no longer running and riding, but I do walk, although not in th summer heat. I’ll get back on the boardwalk with DH now that the weather is cooler, and yet today, again, I am not feeling the energy to even paint…still. I’ll get back to it but not today😉🩵.
@sunshine99 Yes, like your DH i so like to paint Abstract with fluid acrylics, and just started with that in 2020. It’s fun and I loved watching the paint move and decide how to react on the canvas. It’s great because, it’s so beautiful when it flows and if for some reason, it doesn’t come out good, I can still use the canvas for embellishment or a whole new pour. I usually embellish my failed pours with painting animals or birds, over a beautiful background. I love to paint many different subjects. Ocean, animals, floral, and sea creatures, as well as. Shells😊🎨👩🎨🩵
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Mozuke~welcome to the room! I am thrilled that you’re able to run and enjoy it. I’m impressed and hope you’re able to run Those half marathons for a long long time. You’re always welcome here. We are like a family!
hello lovely ladies! It’s not raining in the northeast anymore today Theo doesn’t look like a wet rag doll. He mops the outside with his chest he is so small! But the love is a plenty. I’m so lucky to have him.
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Mozuke-Thanks for adding your 2 cents. I am able to have an active, fun life right now while on Ibrance but know that could change at any point. There was one Ibrance commercial that showed a woman being tired and taking a pass on a boat ride with her family-I thought that was a good representation. She was able to enjoy some things but it acknowledged her fatigue.
Last weekend, I got to run the bases at Wrigley Field-what a thrill that was. But even better was watching one of my co-workers who has cerebral palsy and usually uses crutches walk the bases unassisted. He put his crutches aside. Two people were on either side of him but not touching him and he did it! We were all practically in tears. I've been very fortunate to work there this year-I have co-workers with Down's Syndrome, in wheel chairs, on oxygen, we all do what we can.
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I’m loving these inspiring comments
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Emac, I'm sorry you're going through such a rough time. I hope you can hang in there. But, if your body isn't able to bounce back, maybe you can take a short break. Hugs, Jan
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chicagon That is a beautiful story and a very cool experience for you. Glad you got to enjoy it!
emac So sorry you're having a rough week. Sometimes it just seems endless. I saw a quote that inspired me "The beautiful view comes after the hardest climb". I am hoping your beautiful view is a scan that shows improvement or stable. Hugs
Mara Sounds like paratransit is working out very well for you. Love that you are always still walking any spare time that you have.
Carol Congrats on stable C-Spine , you could use some good news!
Mozuke Happy to hear you feel good and are able to run, that's wonderful!
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@Intolight - How fun to take a cruise to Alaska! I have always wanted to take one of those. The current forecast for this weekend looks party sunny but cooler. Like AJ said, our weather just turned to fall/winter really quickly. In Seattle, it's best to have a raincoat with a hood - it's usually a drizzly rain when it rains and umbrellas don't work well in drizzle. Will you stay in a hotel in downtown Seattle before the cruise? Depending on how much time you have, I recommend you visit Chihuly Garden and glass www.chihulygardenandglass.com. This is a truly stunning collection of Dale Chihuly glass sculptures. I often bring out of town family and friends to this exhibition. I would get advance tickets if you can plan ahead. It is located near the Space Needle in Seattle Center. A lot of cruise attendees ferry over to Bainbridge Island for the day. It is a beautiful ferry ride (you can walk on, no need for a car). Once the ferry is docked, you can walk back on the ferry to head back to Seattle or walk into the town of Bainbridge Island which has nice shops and restaurants. It's a bit of a walk to town (maybe 1/4 mile?). Seattle Art Museum is downtown Seattle and a great place to visit on a rainy day.
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@aprilgirl1 , those are all good ideas!
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@AJ and @aprilgirl1 Thank you both for responding to me. They are great suggestions. I have visited Seattle before but it has been well over 10 years. My DB and SIL lived on Anacortes, and my parents lived in Bellevue but they have all moved on. Unfortunately our hotel is close to the Airport so not too close to the city. My DH will be gone for the first two days leaving me alone during the daytime, but my son will arrive after the first night so we will have one day to play with.
I will not be responding to this chat room for the next two weeks. I will miss you all!
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Hello all, just lost fairly long post, looking back over other's comments on previous pages, so I could respond. So frustrating and cannot retype due to fracture and what I think might be my 2nd bout with Covid. I'm utterly, fatigued, and lethargic - all of that!
For now I will just say that I am following along and have many comments to make to
many of your posts, but just can't right now, due to no energy whatsoever.
A wonderful hello to all though, and extra positive thoughts and wishes to those going through extra rough times right now.
(Hope this one doesn't disappear.)
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Mara, I’m glad the paratransit is working for you. It sounds like you had a long day. I hope you slept well last night!
Emac, I’m sorry you’ve had a rough week. I’ve heard Piqray can be tough on us. I’ve had to go in twice for IV fluids due to vomiting and dehydration. Mine was due to swallowing issues with my Ibrance, but it still wasn’t fun.
Shanagirl, DH often paints in the back yard. Occasionally, he takes the hose and rinses off what he just painted. He uses acrylics and sometimes Kilz primer from Home Depot as a base for his paintings. It’s quite entertaining.
Mel, glad Theo can go out today without mopping the outside with his chest! We went through A LOT of towels on rainy days with our Airedale.
Chicagoan, I always tear up when I see the videos of someone with CP or another mobility disability walking or running without crutches. It’s so inspiring.
Jan, welcome (again, if I already said that.)
Waving hi to cookie, aprilgirl, aj, Chris, and anyone hiding somewhere in the living room!
Carol
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@emac877 i’m sorry you are going thru a slump after taxol. That is a rough drug to deal with. I do remember being on those infusions when my Onc had me on it in my first BC diagnosis in 2009. That decline and weakness during treatment and slow rebound was cumulative for me. I’m finding that now, coloring my 4 week injections of Xgeva & Fasoldex. I’m still in a slump from Sept 17 injections. Today is just as bad. I think this weather is adding to it too for me anyway. It’s another dark rainy chilly day and again, just wearing my comfy sweat pants and hoodie, with a blanket, my IPad, Pugs and TV. Again, I’m totally devoid of any creativity or energy to paint or do anything else. I hope you feel better this evening and sleep well.💗.
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@mara51506 I’m glad you’re doing good with the paratransit. Be careful on those lumpy road walks. I’m going to get some motivation and go downstairs and cook some salmon fillet and clams. DH brought t home for me. He and my son are going to have pulled pork sandwiches for dinner, but my digestive track will never go for that. So I’ll make the salmon. My pugs love Salmon too🥰🐾🩵
@sunshine99 I’m still not feeling like painting. I love that your husband paints. That’s great.🎨😊
@threetree I hate when I lose a long post. Then when that happens I don’t feel like typing it all over again. One thing I do now is I “select all” and copy, after typing a few sentences than if I lose it, I girls.can just paste the copied paragraphs.😉
@intolight I don’t like when my husband is away. You must hate when he’s gone. I’m in your pocket the next two weeks☺️.
@AJ and @aprilgirl1 both Seattle. I’ve never been that far west from the east coast…I’m not sure how I would feel about the drizzly weather. I think fall has really begun here too.
@sondraf Enjoy your trip to Seattle
@micmel Little Theo must love going out in the rain. My guys Sammy & Ollie don’t like it at all.
Waving Hi @chicagoan and @mozuke1 and everyone else stopping into the living room👋☺️💗
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Waving hello to all you fine folks. Slightly better day for me. I got permission to take Ativan not only for bed time but for panic attacks. What a difference after just one day of tx. Here's hoping it keeps working well.
Interesting deep dive into DH's genetic makeup with last Lab Corp. peripheral blood testing. It appears he actually has CLL not non-hodgkins lymphoma, if I'm reading the reports correctly. We will have to wait for his next ONCO appt. for more information. I noticed they use FISH testing, and look for mutations that include TP53 plus ATM (lab info that ties into breast cancer, too).
I watched a few MetaSurvivor stories today. A few takeaways was damn the pink ribbons and tutus. One MBC patient recommended asking where the donations (that are being collected) go to. If it's not for research, challenge them or inform them of the needs for MBC patients.
In pockets for all that have scans and health needs.
Laurel
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Love those takeaways, @irishlove. 🙂
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