My Husband, My Life, My Love, My Family, My Cancer
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Morning all-- 8:30am here.
The TV movie was silly. A woman that takes a yoga class and the instructor is a weirdo that stalks his students. But, hey, something not very intellectually deep.
I just get fed up that my circle of friends/family cannot be there for me. I go to appts alone-- always have. I live alone. Sometimes I just need to talk. To voice my situation, talk out my choices (MO change, change in med routine, etc), talk out my fears. I LOVE this virtual family. I don't know what I would have done if I wouldn't have found BCO. But, I just wish for a flesh and blood human to sit and talk to. Someone I could see their eyes, feel their arms around my shoulder, them tell me "WE got this". Then, when the opportunity does arise to talk, they don't get it or they say "you will be fine, you are strong".
I do not monopolize my conversations with cancer stuff. I talk with church friends on the phone and discuss church stuff, their things they are going thru, their family issues. I actively listen and offer advise and tell them I will pray for them. I call my friends to check on them--- I have one friend that is dealing with her sister's illness and they go to the doctor today, so I am going to text later and ask how the appt went. It may seem on here that I live and breathe cancer, but I do have other interests.
Mae- I do not think it was a bathroom emergency-- LOL. After he said "well I have to go now", we took time to say our "hope you have a good week" statements. We tied up the conversation.
Mara- Oh I get the "basics" thing. Usually when someone asks I say "Oh, I am hanging in there". I do not launch into a long, detailed explanation of my treatment every time someone inquires.
Booboo- Glad you had a good time.
Today is some light housekeeping--dust, vacuum. I may walk on treadmill--haven't done that in a couple of week, my bad. This Wednesday I get another CBC to check how the new Ibrance routine is going. Bev has MO appt this week I think. Any other scans/appts for anyone?
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I only talk about it, if I’m asked Even the caretakers can feel slighted because it’s always about us. I can see how that might get old That’s why it’s torture. I don’t want to not look fine. I am happy that battle is over at least for now. People could never understand unless they walk about 25 miles in our scan shoes. Feel your feet? Didn’t think so. Constant pain? Awww suck it up , no clue the fatigue, no clue the skin crawly feeling or nauseous just because we have a ton of medicine to take every freaking day. It’s hard for us , the family. I hate cancer. I hate it more than I could ever hate anything else. People keep you at arms length, they just don’t get it
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Hi, all,
Candy, as you noted, I did have an MO appointment this week.
I just had my Telehealth consult with Dr. Cristofanilli at Northwestern regarding my blood biopsy and circulating tumor cell reports, as well as my latest MRI of my liver (which may have shown progression -- IR appointment tomorrow.)
Got a ton of info from Dr. C -- he is the consummate MO, I'm telling you, and I wish I lived near Chicago so I could see him on a regular basis. I just LOVE him!!! Anyway, he gave me some food for thought about a possible treatment change based upon my recent reports, and I have to talk to my Hopkins MO about it. But he was very interesting, and he just makes so much sense when he talks.
So I'm still in a holding pattern, but hopefully some things will be resolved soon.
Candy, I feel for you with your friend. I have had a close friend for many, many years -- our kids basically grew up together. But these days, when we talk (which is now infrequently) she has no interest in hearing about anything that I have to say, especially about my illness. Her mother died of BC metastasis, and I think that when I talk about it, it cuts just a little bit too close to her, so she hurriedly gets off the phone with some flimsy excuse. I get it, but it also ticks me off royally. As a result, we have very much drifted apart. Like you, I don't talk about my stuff that much, but as a 30+ year friend, you would think she could sit through a little bit of it. Not so.
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Laurie, great to hear from you. I feel the same about Mel and her style. I most definitely am not a style guru. Wigs make the hair easy but I have to plaster on the makeup and contour my face for me to feel particularly attractive. I wear T shirts, jeggings and leggings. Hoodies and vests when colder weather comes. I don't go places that require me to have particularly nice fancy clothes. My nails are clipped short.
I have been looking at my wee apartment trying to think of things to buy to make it store my stuff when I realized something. Instead of just buying stuff to hide what I store, why don't I get rid of stuff. I am starting with the broken panda spinner taking up room in the bedroom closet. I posted on a buy and sell place to give away for free, just would leave curbside. Will see if anyone messages. If they can fix it, they can sell it. We will see how that goes. I would like not to bug my older brother about it but I do not know when I will see him next and he has a busy job.
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Hi BevJen. Glad you could give us a report on what you know so far. Let us know how the IR appt goes and what next treatment will be--- I was thinking you said Piqray and Faslodex maybe. I can understand with your friend losing her mom to MBC it would be tough to see you walking down the same path. But she should have empathy for you and know you need her now. Sad that 30 years of friendship is now strained due to something that is out of your control. This cancer is so sad.
mara- I agree with paring down stuff. If the panda spinner is broken, and you do not plan on fixing it, get rid of it. Simplify.
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Candy,
I agree with what you said and it cutting a bit too close for comfort with my friend. I can understand it, but she won't acknowledge it and therefore we've grown apart. Yes, cancer is sad.
Doc in Chicago and doc in Maryland differ on next treatment if there's a treatment change. I may come down to a biopsy, so the IR may be the determining voice. We'll see.
Mara, yay to getting rid of stuff you don't need or want. I am trying to do that now -- but DH isn't so accommodating on that. He's a pack rat!
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BevJen, I am just tired of having stuff take up room in my home that I do not use. I am getting the broken spinner taken away for 60 because I am tired of having it in my closet. I put two window fans I have not used in almost 2 years since my condo and put them in the entryway of the apartment. I made sure to note they both work and are free. I will put my working panda in the closet. I have a large cat carrier that does not fit anywhere else, I stuck it next to my bed. I am going to make sure that my clothes don't spread beyond the closet or bedroom
I am also setting hard limits on my laundry supplies. I don't need all this extra crap that I don't use in the house. If it is not used, it goes. I have also tossed two bags worth of junk into the trash and will continue this way. My apartment is small and I need to scale everything back without having to buy a bunch of different stuff to house everything. In days ahead, I will address my living room closet as well. Lot of stuff in there I don't need on the top shelf. I am being heartless because I have such a tiny apartment.
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Booboo, waving back.
BevJen, I hope you get answers soon. Thinking of you.
Candy, I go to my appointments alone as well. They won’t allow anyone in with me at this time because of COVID. I’m sorry you feel so alone. I am sending you a virtual hug.
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Mara,
I love purging! When we moved to Florida, we got rid of so much....even the dining room table, chairs, etc. I knew I didn’t want a house with a dining room that we only used twice a year, and sure enough our current home does not have one. We were supposed to have a community yard sale here when Covid hit, and it got cancelled. Hoping we can have one this year. I just love getting rid stuff. My friend from PA that went to Hilton Head sells so much stuff on eBay. She told me she made $10,000 last year from selling stuff. That’s crazy. I would do it to but I don’t want to get into the whole shipping thing. But she sure enjoys it.
Anyway, keep going. You will soon have enough room to maybe move things around. I love to do that too. Feels like a new space when you do.
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I actually managed to get rid of the panda spinner that was broken and two window fans I don't use. I used a company that only charged 70.00, much less than the 150 I was quoted from other places. They were also able to come today. Older Db and sIL did not need them and I really wanted to get rid of them. I put the working spinner in my closet in the bedroom and can work to clear things off the floor where they were. I plan to put in a large dresser in the living with fabric drawers and a wood top and take my but I will need to pay some stuff off first. Storage that is not seen would be preferable as well. Not too worried about that yet.
Feeling a bit lighter and still have a ways to go. Rolling clothes and putting into existing dressers as well. If I can keep stuff off the floor that would be good. Also don't want to have to use extra containers as that means I am buying too much for the size of my home. Same goes for laundry, I plan to keep about half of what I have now. Don't need a lot here, including gads of extra beans and food. Even if stores go back to an earlier stage of opening or closing, our supply chain has been pretty steady and stores already know to set limits on things so we do not have the blank shelves.
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waving hello 👋🏾 To all
Booboo welcome home. That sounds like a perfect after isolation vacation.
Tanya
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Thanks Tanya. We drove, as did everyone else. My sister and her husband live on a ranch in TX in the middle of nowhere, so I wasn’t too worried about Covid. My friend from PA is Covid crazy, and she actually got tested before she came. Negative of course. So we were all very careful to wear masks, and even did our best to social distance. We rented a house with a pool and hot tub, and man did that ever get used. Couldn’t get the group out of it.
It was just so good to get away. Also to talk to others face to face. I’m ready now to start my new chemo on Thursday. Hoping this one works.
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sounds heavenly. Missed you while you were gone. BooBoo! You deserve the good time! So does DH. Glad all is safe.
my heart was happy when I read you took the masks I gave you. My precious friend. I also am a PA person as you know. I almost got to meet you. One day I’ll have someone. Near me. Philly is the closest. She’s still pretty far though. She doesn’t really drive to much because she lives in the city. I don’t drive long distances. Because of my spot on my spine. Sucks. Philly , we miss you!!!!0 -
My other one is hiding. A lot. I think he’s sad0 -
Mel I am sorry Deeoghee is still so sad. To be expected but still sad to watch I am sure. Hope you are doing OK.
Laurie, so glad you got away and enjoyed the trip.
I am sitting here pedaling my cubii with the laptop on my little bed table that adjust. Playing a game for money, playing the radio for money and just chilling out. After the business yesterday, I am just chilling today. Not sure if I am going to walk. I have pedalled for two hours so far. Love the mini elliptical. Have a good day all
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Sounds great booboo! We’re planning to have a mountain top hot tub at the cabin, can’t wait.
More packing today and a couple mysteries
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I am impressed you remembered my other dogs name Mara. 😃🥰 you ladies are amazing...
Waving hello to BevJen and Mae, Sondra,Tanya
Santa , hoping your package arrived by now!!!
I hope the fires are calming down,some scary stuff there. Between hurricanes and fires....floods. Sum crazy shit.
Looked down and realized three more until 17k wow!
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Hi all.
Laundry for me today. Windows open-- in the 70's and low humidity.
Tomorrow I go get blood drawn--see how Ibrance schedule is doing for me. I was thinking, the only times I get out is to go to the doctor, or lab, or pick up Walmart curbside. But, with Covid concerns I really cannot do too much out and about. No shopping or piddling at the mall, no going out with friends, no church. So not too much to do. Getting tired of it. 2020 has been spent living in my 4 walls of my home. And no end in sight. Sigh....
Boo- I hope the new chemo is easy on you.
Mara- You go girl. Keep pedaling.
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Mel, \I remember partly because I care about your posts and the distinctive spelling of the sweetie's name.
Candy, I managed to pedal for 3 and a half hours in total. Not sure if going to do more., probably not I like it because I most definitely feel the effort and there is no foot pain. I can sit and do my money making as well and be active. My cubii was well worth the cost. I can also understand the not going out for covid concerns. Since the kids have gone back to school, there have been outbreaks at universities and flu season is coming up too. Our social gatherings have been shrunk down since people are partying and not paying attention to safety. A lot of anti maskers here as well. Stupid people.
I do go out but limiting it as I want to minimize spending and adding unncessary things to my house. Same goes for food. I also need to stop adding hand sanitizers to my supply too. I don't think I will run out of them anytime soon.
Mae your cabin sounds amazing.
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Aw, Mel, you are so sweet. I am serious when I tell you that flying into Allentown is the cheapest and best place for us to fly. When the time comes that I feel safe to fly again, I am coming to visit you. You are so very special to me, and I’d be so happy to see you face to face. But look out....we will probably need several hours since I know we’d talk each other’s ears off! Just like when Tanya and I had lunch. Felt like I knew her forever! Can’t wait to have lunch with her again.
BTW, that picture of Deeohgee is so adorable. He will be ok because I know you are showering him with extra love.
Mae, I hope you do get a hot tub. My body felt so good in there.
Thank you Candy. I’m hoping I can tolerate the new drug and that it works!
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Booboo, That time with your friends and family sounded so perfect. I could “hear” your joy in being with them in person again. We had a tiny gathering with my son and my brother for dinner recently and I felt a sense of connection with them that really lifted my mood. I agree with everyone else on the hot tub, yes please. 😊 Best wishes with your new treatment.
Mae, also agree that the cabin sounds awesome. Enjoy! Maybe a pic for us if you can?
Mel, Poor Deeohgee does look down in the dumps. It seems you’re all mourning Tag together.
Mara, That’s a good plan to give away items you don’t use anymore. Freeing up space is good for feeling and makes space when you decide what new things you might want.Candy, Good luck with the blood counts. Today my masseuse said she thinks Covid is winding down. I’d love that to be true, but kind of doubt it.
Tanya, Any back relief?
I think I mentioned my arm and shoulder pain last week. Not lympedema, but my primary doc called it rotator cuff impingement. I got a 6 day steroid pack and a physical therapy order. But today, I had a deep tissue massage (first one of those) and man, was it just what I needed. I hope my looseness lasts a while. She also worked on my underarm tightness on the other side from my lymph node removal, really needed that too. I highly recommend trying one if you haven’t had one before. (Or maybe just a relaxation massage, which is what I usually get.)
Hello to everyone. 👋
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Mara you should add up your miles and keep track. I think you'd be in Hawaii by now if you could go as far as you've pedaled and walked.
Mae I hope you get a hot tub, That sounds like a slice of heaven.
Mel sorry your (deeooooggee) is still grieving. He looks like he wants to go to the park.
Candy I hope your blood work is better and you get to continue on the 5/2 regimen. How do you feel? Any different, less tired or anything?
Booboo thanks for sharing your vacation. It sounds like everyone was super careful and it all worked out. I think we all need your vacation. I hope when you fly into Allentown it's an easy trip for you and you hug our dear sweet mask making Mel. She takes care of all of us thinking and asking about us.
Thanks Mel-you're appreciated!
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Candy,
Hope the bloodwork is good!
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my daughter got a beautiful gift from a friend of hers.
She’s having me one made0 -
Definitely getting a hot tub. I want it on this outcropping but DH wants it on the deck (I think it’ll be too heavy filled with water though). Here’s a pic of the valley view too that a friend took with his drone.
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Mel, that piece is lovely and a loving tribute to tag. So glad you are getting one made too!
Candy good luck on your bloodwork
Tanya, I did go pretty far. Today I did 4 hours on the elliptical. So nice sitting on the couch and being able to do my surveys and games. No sore feet either. I have Herceptin infusion tomorrow so I will be walking to the hospital. My DB wants to go out after supper tomorrow. Hope I am still away by then, we will see.
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YES!!! I was away over the last few days seeing my aunt (got a covid test before, & drove) and returned to find them! They are stunning!!!!! Gorgeous ! You picked wonderful patterns and colors!! I am very grateful, I will love wearing them!!!
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Mae - we are all going to road trip to your secluded mountain top cabin at this rate!
Nothing new here other than government dropping new restrictions that don't seem to matter much to how we live anyway. Ive either lost a bit of weight or put on some muscle as I've noticed clothes fitting a bit looser, which is good. Somehow Im in better shape with terminal cancer than I have been at any point in the last five years. Go figure.
Potential new MOs office called today and I will be heading over for a second opinion/discussion (face to face even!) on October 5th. They proposed next Monday but a) work schedule was way too busy to rearrange and b) I am scanning next week so putting through any switch until that is completed doesn't make much sense.
I tasked Other Half with making dinner tonight (usually I make it as I need a mental break at the end of the work day) and he really outdid himself with a pork tenderloin and white wine and mushroom sauce with roasted baby potatoes. I also had a giant serving of my beloved red cabbage salad.
Hello to all - and welcome to the first day of fall!
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Sondra, the cabin location really would be a great place for a weekend retreat and I find myself in pretty good physical shape as well, weird.
We had pork loin last night too, I cooked, DH will cook or find himself something tonight, I’m taking the day of.
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Tanya -
How is your recovery from your ablation procedure? How long ago was it and have you had any relief? I’m getting my last nerve block test next week and hope to move on to ablation in October. I can’t wait. Last week was bad and had to rely on some hard core pain meds for a couple days.
To all of you stuck at home, I feel your pain. We moved to Wisconsin a year ago to be closer to our grandkids and now I can’t see them. Only go out for doc appointments (well, except for taking Mariah out to play ball every 2 hours - lol). We are struggling with what to do for the holidays. At least we still have time to decide. I'm so excited that our best friends of 40 years are coming to visit this weekend after quarantining. Lots of talking, eating, sharing good wine and game playing. Just what I need to help me feel normal for a few days. I wish the same for all of you this week ☺️
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