My Husband, My Life, My Love, My Family, My Cancer
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Well, I finally kicked my butt onto the treadmill for 30 mins so far. Really did not want to exercise but had to really convince myself to do it. This gives me enough energy to take the bus out to Walmart and get a few things. I also will make myself walk outdoors this afternoon and evening. I know that this urge to stay home and sit is harmful to me and I need to keep up with the physical stuff, even if I don't want to do it.
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Oh hai, summer!
Man, it showed up with a bang - 97F today at 4pm. We lit up the grill and had hot dogs for dinner (and some chicken breasts cooked for tomorrow night and a salad). It'll cool down a bit and then mid 80s all next week.
The gardener came today and so the yard is all tidy and clean too. Everything is starting to get locked down again so any attempt we were thinking of making for a trip away is kaput. Ah well, this is still a much nicer place than where we lived before, so its all ok.
Have a good weekend all!
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Good afternoon all,
Just staying inside as usual. I did swim a bit earlier. It's hot here. I did some light gardening- very light- like turned the water on.
i slept really well last night. Of course the Ibrance fog in the morning where I didn't want to wake up but I did it. amazing
Mel your finger looks bubbly and painful. Wow cold water burn cream- that kind that they gave me for radiation is the best for burns.
My daughters (two daughters married two brothers-but one of them is divorced from one brother now) father in law was diagnosed with advanced stage liver cancer about a month ago and nothing has worked. He has one more second opinion appt. Tuesday. He's done the y-90 and whatever else but nothing has worked and he's in a lot of pain -69. Amazing how this disease just shows up. He's resolved to fight and if it doesn't work he'll do hospice at home. He lives upstate NY- so the grandkids down here are going to see him Aug. 4th. At least they are allowing his wife to stay in the hospital but she wasn't allowed in when he did treatment.
Mara the masks thing is just a diversion at this point. Most people I see when I go to the store (not often) have on masks. When these kids get rammed on crowded buses with face masks under their noses and dangling from their ears next week the covid will be spread again. Some of the private schools here have opted for started online and then gradually going back after we see the two week downturn that we've been waiting to see for five months here in FL. My grandson is a history teacher in Atlanta. He said they start next week but only the teachers will be in school and the kids will be online. Zoom or google rooms or whatever. He said that it's easier for him but he worries about students who will fall through the cracks. Trying times for sure.
I saw neighbors across the street and waved and shouted out to them. I told my husband to come on the porch. We both stood there smiling weve been deprived of socializing to the point of acting like crazy people.
Have a good day all!
Tanya
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So I had a telehealth appt. today with my MO, and we reviewed the results of Tuesday’s PET scan. Apparently my right femur has enough cancer that she said I may need a rod put in the bone. Overall, I had more progression, but still have cancer in just the bones. She did say I had it pretty extensively throughout my body. So, she’s starting me on Gemzar next week; three weeks on, one week off. Scan again in three months. In the meantime, I have to get a regular X-ray of my femur. She is going to consult with an orthopedic to see what next steps are. So onward we go.
I have another summer cold. I pickup everything. I guess I got it on Tuesday when I went for the scan. I’m living on Advil Cold and Sinus!
Tanya, thanks for the info about pain management at Moffitt. I appreciate it!
Mel, I hope your finger is okay. That looks painful.
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Booboo sorry to hear about your progression. I'm glad that you and your doctor have a plan. I know you struggled with finding a doctor that you liked. Praying for you dear sister.
Tanya
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Boo- Sorry to hear of your progression. Wow, maybe need a rod in your femur. I pray the Gemzar is easy for you-- I need to look that one up. Hug from here.
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BooBoo~Haven't danced with gemzar, I am hoping it will be the thing to keep those Mets stable. I hope you don't need a rod in your femur. I'll be sending you my constant Energy and thoughts. Hugs to you sweet sister. I was wanting to send you some masks also, since you and I were very close to meeting until you suddenly moved. I would like to be able to do that, if you would use them. Of course. I Went down to the dispensary today with my little basket of 100plus masks. People went crazy for them. They were asking me about them be they couldn't believed I had made the myself first time ever trying to sew. I gave away almost 30 masks they employees were adorable and were excited to see them. I gave at least two to eacg employee. My friend Ida got 4 she's a cool chick. So it was a good day giving something back! At least people will use them. Which is what I want. I'm going back down for the second shift so I can get my favorite people that didn't work today. It's really been a nice addition to my days , I am thankful. Now all I need is my desk. 14 days , hopefully sooner.... goodnight ladies Hello Runor! Saw you snuck in there. 🌻🌹😃
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Booboo, sounds scary and hope the new plan knocks the mets back a bit.
That burn looks sore Mel and Mae delighted food is now something you’re finally enjoying after such a long haul.
Found out this week I have a DVT in my knee... long term treatment makes for ‘sticky blood’ apparently. Now on a blood thinner as well (Rivaroxaban). Have posted over on the Ibrance thread to see if anyone has any experience of that. Although I’m fine as long as the drug works and I can still keep active, it’s a reminder of how things will go especially when the MO says ‘ with metastatic patients it’ll mean you’ll probably need to take these for life’. Bought myself some flowers to cheer myself up!
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Karen,
Rivaroxoban (who comes up with these names?) is a good drug. I used to work for Johnson&Johnson, and it was a much celebrated addition to those available for DVT. I hope you will see great success on it. I like the idea of buying flowers for yourself. I need to do something like that too! Great idea.
I am trying to stay positive through the news of more progression. I am choosing to celebrate life today, and leave the other stuff in the dark. At least it looks like the hurricane is going to miss us. See? Silver lining.
Mel, I would love a couple of your masks. I’ll send you my address. And don’t count out seeing me when I come North for a visit to see relatives. I’ll say it again about how very proud I am of you. Isn’t giving back the secret to staying positive with this disease? It sounds backwards, but it really works. You are an inspiration girl.
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Booboo, I too am sorry to hear of you progression as well. Glad there is a plan to help deal with it. Thinking of you.
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Karen, I am sorry you are having to deal with DVT. I know how dangerous that can be. My mom had to take blood thinners for a different issue as well. I have heard of the drug you are on.
Laurie, I admire your attitude and choosing to celebrate life. I could not agree with you more on this and glad the hurricane has missed you.
Mel, I will PM you my address, hoping you can send me a couple of masks, I managed to shrink the other fabric ones in the dryer so they no longer fit properly. It would be very kind of you.
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Mara~Of course honey. I find the best way to clean them. Is to steam iron them They clean all away all bacteria at a certain temperature. That’s how I’ve cleaned all of mine I read a prep video and it says that’s the best way to clean the cloth masks. Washing them will take them out of shape or shrink them completely. Depends on what they are made of. Bathing suit type obviously wouldn’t be pressed. But the cloth masks are comfortable. What colors would you like ? Do you consider yourself small or medium in your face ? It matters. I’d be happy to send you some as well.
BOOBOO~ I would love to see you, send me you’re address also ! love to alll.
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Well ladies. I knew of 2 other women in my area with Stage 4-- one bone only and on year 8 and stable, the other was liver and bone. The liver and bone lady died this morning. She was 83. Just diagnosed with Stage 4 within the last year. Was on Kisqali. Stopped treatment a couple months back-- couldn't tolerate it. So was not on any treatment for a couple months.
There may be others out there in my small community, but as far as I know, it is the bone only lady and me.
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Mel, thank you so much, I consider my face medium I would say. Colour wise, I am not fussy but my favourites would be black, white, grey. Colourful and patterned masks would also be nice, in those cases any colour or pattern would be good. I really appreciate it, I will definitely steam fabric masks in the future and just hang them on my drying rack.
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Mel there is a silver nitrate ointment that works incredibly for burns.
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Living room ladies, I have a question.
I started tamoxifen three years ago. It stopped my periods (which were regular at that time) dead in their tracks. I have not had a period since July 2017. Not a hint, drizzle or splotch. Nothing.Today I am bleeding. Cramps, the whole nine yards.
My onc did tell me earlier in July to quit taking tamox for a month, he was thinking of switching me to a different hormonal. I went off tamox for maybe a week or so before I decided to stay with the devil I know rather than start juggling around trying to find something I might tolerate better, or tolerate worse! So I was off for maybe one week in total and then put myself back on tamox. And now, a week or more later, after stopping then starting again, I am having a period. At this point it might only be some spotting, too soon to tell. If this keeps up for days then it will be a period. Or, something.
I do not need to see a doc about this, right? This is a non-issue, right? It's just a little bleeding (after three years of nada) so I do not need to bring this to anyone's attention, right? RIGHT?
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runor, I'm passing you a soothing beverage and saying you know you have to report it. But they'll probably say it's because of the tamox break and just wait and see. Or if they are super cautious, might send you for a transvag U/S.
I know my nursing school notes are that any episode of vag bleeding in a post-meno woman must be reported and worked up
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runor, seeing a doctor is recommended. Tamoxifen never impacted my periods but it does cause thickening of the endometrial lining and is associated with an increased risk of endometrial cancer. It has a positive estrogenic effect on reproductive organs while blocking estrogen in breast tissue. It started out as a fertility drug although was never too successful for that purpose. You should have any endometrial issues ruled out. I recall needing to have a D&C to remove some of the endometrial lining while on tamoxifen. I also had to stop it a bit early when my lining was getting dangerously thick.
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Runor, I’ve been on tamoxifen over 3 years now, no period either but I’d be freaked out enough to at least send my MO a message about it. Please notify them and go from there.
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Runor- that is like my greatest fear even though I get shot up with the big capsule every month. For that reason I keep some 'supplies' around still. Definitely a call in and not a wait and see - what if the meds need to be adjusted?
Karen - was it really obvious swelling - like your calf and ankle on one side were significantly larger? This is my other major fear as my father has had any number of blood clots and is on blood thinners for life. MO mentioned to me at the outset that any international flying would require compression stockings due to the risk of blood clots, so I guess its flagged somehow about the cancer.
I finally went out today to the next town over to my favorite bakery to get some maple scones, stopped at the little shop that has a bunch of cheap fun things and picked up some random bits - a tray for cocktail nibblies, tiny bowls to hold olives and dips, squishy toy things for kid xmas gifts - that sort of stuff, and then hit up Whole Paycheck. Walking in there it smells just like home, even if most of the brands tend to be European. I was beyond thrilled to score some proper American tomatillo salsa (Mrs Renfros) and proper light tortilla chips.
Lots of people out and about having coffee outside in the sun, shops open, etc. I guess we will see how long that lasts, but it felt almost like normal - except for the guys hosing down public spaces with disinfectant. Lots of masks on too.
Mel - any news from Philly?
Florida and Gulf Ladies - what is the news on that hurricane and how are they going to socially distance in shelters this season?
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Sondra, sounds like a nice trip out for sure.
Fl people definitely let us know about the hurricane. I had not even thought about how shelters would go.
runor, I would also report the bleeding as well. May not be anything but better safe than sorry.
I just got back from my third walk of the day. Went first thing this morning and tackled a steep hill. Got up it fine but found the heavy breathing took less time to subside for me. I have done the hill but found myself breathing hard most of the way home. That is encouraging. Went on another walk after lunch, flat ground this time. Had a short nap after. When I woke up, decided I wanted Christie Pirate Cookies. They did not have those at my grocery store so I got oatmeal cookies and more peanut butter. Same difference anyway. Other than that, nothing else going on. I though maybe would do something with DB and SIL but not very likely as the weather is taking a turn. Oh well, they certainly are entitled to their own lives and things to do.
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Good afternoon
Runor definitely call and let them know. Lots of great advice here. I’ve had I think the equivalent for five years arimidex. But I had menstrual cessation at 46 after the adrymicin, taxol, taxotere chemo regimen back in 2004.
Mara nice walks. I watered and got my swim in.
Weather report from Tampa the west coast of Fl. Today sunny and hot 93. A few clouds ⛅️ blew by. Tomorrow is supposed to be cloudy and chance of rain. The east coast of FL is where the storms supposed to be heading.
Mel I think bigbhome used to report from FL east coast.
I haven’t watched TV yet today. I think I mentioned that I read with my mom and daughters Mon-Sat at 11:30. Today I woke up at 11:00. Wow don’t even remember turning over! We’re reading American Dirt. It was on bestseller list.
Karen sorry about the DVT. I hope the medicine is a gentle easy solution.i buy myself flowers too!
Candy sorry those ladies in your town have BC. It’s scary every time I hear of another BC patient passing.
Waving hello to all.
Take care
Tanya
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booboo, I echo everyone here and hope new tx knocks back the progression.
Mel, hope your finger is better. You're awesome to do all that sewing; esp wounded!
Karen, hope that drug works well for your DVT. Was it dx from swelling and pain?
Candy, so very sorry to hear of the loss of a friend.
On the mask wearing, I talked with a friend from Vegas the other day. She informed me the virus is over in her opinion because of herd immunity. A new phrase she just heard no doubt. I disagreed with her and said there won't be herd immunity until there's a vaccine. She changed the subject by asking what I've been doing? I told her, staying home. Clueless.
Waving hello to anyone I missed and all others reading. Philly?
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BooBoo~Johnson and Johnson was my account when I worked for Fisher Clinical Services. I was responsible for all the billing and colllections and any invoice issues or questions. It was a huge account I enjoyed it a lot. Before I got sick I had it for Four for years. Miss feeling independent with working and making my own money. I just got done picking out your assortment of masks. I'm thinking Monday I'll head over to the post office and then the fabric store. I have to make my weekly purchase. I like to have fabric on hand. To meet requests.
Mara, I chose your also , I have a marble grey pattern I'm sewing now. If they are done. Which they could very well be. Ill throw one of those into the envelope. I hope everyone you wer the mask you'll think of me.
I Iove all of my sisters. Runor, put in. A call. Just to be safe. Always err on the side of caution I'm sending you strength and good thoughts. Candy~ I'm sorry for your loss. They all just suck. You should have your package Monday That's what the tracking says. Looking forward to see if you like them. I just want the to be useful. My way of giving back.... right BooBoo? I enjoy the sewing part I have to admit I could see all days. Sewing away. But I do have to take breaks. It's worth it. To see the end product. Who Hooo!!
min tired. Can't wait for bed. Up and seeing I'm sure. I know Dh is on a painting mission for his office space. Which is good. Can't wait till it's totally done. I'm excite for him. I can't wait for my craft work area desk, puzzles sewing , crafts. Scrapbooking. Anything I should need or want. I'm very exited to get it. The downstairs is nothing I'm familiar with it. It makes it look like a new house with new furniture! Truly thankful. Hope all is well with everyone. My burn is healing slowly. I did manage to get the cream you all mentioned. It was a miracle cream for sure. Thank j goodness they have that stuff. It really hurt. Goodnight. Unless insomnia strikes.0 -
Mel,
How about if I send you some $ to cover postage? I’ll send enough to cover a bunch so that can be my way of giving back.
I can’t wait to wear them so I can brag about my friend who makes them!
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I have them all picked out. I hope you like them. People at the dispensary were flipping out over them. It was funny. You're also sweet to offer. I don't mind doing this for my sisters. I want you all safe. So if anyone one else changes their minds The offer is still standing. I have 85 after the ones I separated for you and candy. So I have plenty. I also have 7 or more fabrics. I'm addicted. I made more yesterday and will start soon again. Soothing for sure
sending you hugs my beautiful friend .0 -
A couple of you asked about my DVT - Booboo thanks for the info on the Rivaroxaban, that’s reassuring! No pain luckily, just pressure and pins & needles. Here’s a pic:
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Mel- Looking forward to the masks. I will let you know when I get the package.
So last night I did something totally different for me. I was talking with a friend a couple of weeks ago (who takes Covid seriously) and he said he would try to get a group together on Zoom for us to play a game. Last night was our first game---- Dungeons and Dragons. I have never played before. It was interesting. Hard. A little confusing. But fun. There were 4 of us, me included. We played for 2 1/2 hours. We are "Zooming" again next Saturday night. Need to read up on the D&D characters this week--some homework.
But then after we signed off, the fatigue hit, hard. My sister texted to see how things went with the game. I could not even think. I had to go straight to bed. Thank goodness it didn't hit DURING the game. I hate when the fatigue hits. Kinda scary. Like, cannot think.
Today is church online and not much this afternoon.
Karen- definitely swollen
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waving hello to Karen! Waving to candy! Good morning ladies. It’s rainy here. Today. Humid soup day. Yuck.
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Karen, I hope the med does the job on your swelling. It’s definitely concerning when something swells up. Also, I love to read about how things are in Scotland. Please keep it coming when you feel like it
Booboo, Sorry too about the progression. I hope the new plan is tolerable and knocks back the mets. The rod sounds a bit rough but it’s pretty amazing what things can be done nowadays. And maybe it won’t be recommended after all.
Candy, It does hit home for us when we hear someone dies of MBC, and it must be even worse when you knew them. Im on a local FB page for my city but I haven’t met anyone in person. The woman who “found” me on another FB page and told me about the local one passed away this spring. She seemed to be full of energy even though she must have been pretty sick. Your D&D night sounded fun. I’m not really familiar with the game but learning any new game can be hard. Friends tried to teach us how to play Bridge once and it wasn’t exactly successful. Good for you for being open to it.
Mel, Glad you’re enjoying the mask making. I’d love to get 1 or 2 if you have a lot available. I’ll PM you. Getting new furniture is fun, hope you get your desk soon!
Sondra, I’m glad you had a nice day out and found some great snacks.
Hi to everyone reading. I’m another year older today, 61. DH and I are planning to have dinner at a restaurant patio. The spacing is usually pretty good with the distancing rules. At least that’s what we tell ourselves.
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