My Husband, My Life, My Love, My Family, My Cancer
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Just want to say hello and have a big group hug. I don’t know why things feel so bleak right now. I’m glad we have each other. Mel, I hope it’s OK if I just take a nap on your living room couch. Keep talking - I love to hear conversations while I’m dozing.
Caro
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Mae - killing me with ordered hot tub and now this adorable bar. I’m on my way
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Mae- love the bar shed! When is happy hour because I'm on my way!
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Mae, looks great. Enjoy!
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The beach bar is definitely exciting and I’ve been accumulating the decor for years. The plan is to have a big outdoor entertainment area, a place we’d want to visit without coming down off the mountain. Hopefully, I’ll be attending the zoom group from there in just a few weeks but I’ll also be posting plenty of pics here, just try and stop me, lol
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hello Darlings, runor… I missed your post, please know that you’re not alone with kid issues. I’m about to tell my 20 year old she can stay at school, I’m not a servant with unlimited cash for you to spend, for heavens sake.
I’ve missed everyone.All seems well. Some calcifications on the last mammo, opposite side, with a follow up Monday past. I am embarrassed to admit that I absentmindedly applied deodorant prior to the annual in May. Hopefully I’m right. My instincts tell me I am but who knows. What will be, will be.
Beautiful bar Mae!!! I loveit.
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Mae - that looks like so much fun!
Elderberry - Im lucky if I can make it to 10 these days, I fell asleep in a concert last week because it ran past 1030 (to be fair, it was the kind of music where sleeping is somewhat encouraged). But.. I wake up at 430 or 5 and get my Morning Time, which I just love. Quiet coffee and best brain capabilities, so I work on stuff I want to do that is important. It helps that the sun comes up about 4 am here in the summer!
Ergh, I just realized I need to file US taxes today for the international deadline
Its usually somewhat straightforward with TurboTax, but we missed depositing one of the pandemic payments and IRS said to reclaim it back through the tax filing as they weren't reissuing checks to international citizens. Gonna be a FUN day.0 -
Mae~an umbrella drink , some wings and some German potato salad. Sounds wonderful. I love the. Color. How are the puppies ??
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Well, the least favourite part of summer has arrived, hot and HUMID. By this afternoon it will feel between 100 to 110 F or 40 to 43I am going to acclimate by going on short walks to simulate catching the bus to go places a few times today. No more than 10 or 15 mins. I will be armed with my handy neck fan which I can place the charger in my purse so it does not run out. I will also religiously use the UV umbrella to keep sun off my head. Since I cannot uber everywhere, I will need to employ this method to build up tolerance to the heat. Figure 3 or 4 walks gradually getting longer should be good to build up the tolerance whilst having tools to keep cool.
Hope all have a decent day today who can, anyone struggling with scans, I will be in your pockets as needed and offering support.
Edited to add that I just got back from a 15 ish minute walk. I did use both the UV umbrella, still put sunscreen on as well and the neck fan. I did stay cool even though it was a 102 so this is a good system to have when I have to be out for getting the bus to places. Most walking will still be indoors. Not going to take chances as I have learned how dangerous that can be. Biggest indicator is that my face was not lobster red.
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Hi Everyone,
I’ve been a lurker of this thread, mostly watching for posts from Moth as, like you, I am hoping things turn around with her liver numbers. However, the career conversation resonates with me so I thought I would post.
Unfortunately, for most of us, our careers are one more thing that MBC sidelines. I was in senior management until I stepped away from work in early April. Prior to diagnosis I was looking to continue to advance my career, moving into increasingly senior positions. When the diagnosis came, with all its uncertainty, I felt that put an end to any advancement thoughts as I didn’t feel right about taking on more demanding roles given treatment related side effects. My workplace is pretty demanding and high stress, particularly at more senior levels where the expectation is that you are “on” 24/7. Did I really want to put myself in that position?
Ultimately, I was okay staying put in my current role as it was very fulfilling and I had a great management team above me that were very supportive. Ironically, once I got past the initial diagnosis period when I had a lung full of fluid, I had fewer sick days than all of my colleagues! But fast forward five years and the cancer had spread to my liver. Treatments were getting harder and I was finding that it was difficult to work full time so I chose to use my LTD to reduce my hours. That was a big improvement and I was able to continue to do my job, performing at a high level despite the reduced hours. Unfortunately, then my boss retired and her boss retired within weeks of each other. Had I not had MBC, I would have been the heir apparent for my boss’s role of Executive Director. Instead they brought in someone with limited experience and a lot of attitude. 🙄 While I think she thought she was doing me a favour, she kept dumbing down my job to the point that she was asking me to sort files on our network drive. Seriously? This is a job for an administrator, not a senior director. I was miserable and hated reporting to this individual. So… decided it was time to pack it in and go on full LTD. Best decision I’ve ever made. I am so much happier and appreciate the lack of stress that came with not only the job but trying to work through the side effect du jour. The timing turned out to be good from a health perspective, coming off back to back treatment failures, a new met on my cervical/thoracic vertebrae that was causing issues requiring radiation and greatly increased fatigue from the new chemo.
Sorry for the long post but wanted to let Emac and Sondra know I get the struggle with work. It sucks that for most of us, MBC robs us of career aspirations but sometimes the alternate path is not so bad.
Hugs to everyone struggling. I scan on Monday and fingers crossed things are improving with my liver mets!
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sadiesservant, I had my bosses bosses job when I medically retired at 43 and I really enjoyed working too but after brain mets I was concerned about not performing at the level necessary and that I expected of myself. Fast forward to now and I have nearly zero stress, freedom to do whatever whenever and between LTD and SSDI my monthly pay is the same. While I’d certainly rather not have cancer, this retirement thing is pretty sweet.
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So interesting appointment with MO today. I was shocked when she told me that the avascular necrosis of my hip was actually caused by Xgeva. Apparently a very, very rare occurrence in less than 1% of all patients. Thanks a lot! Here I think I’m getting this drug to strengthen my bones and instead it’s killing them. The most common problem with Xgeva happens as osteonecrosis of the jaw. We discussed the recent Ibrance study. She explained that Ibrance delays the period of progression, not necessarily extending life. I have essentially met the time frame for when one would expect to see progression on Ibrance, which is 2.5 years. But that does not mean that progression will occur and much depends on the type of MBC and amount of time between 1st BC dx and MBC dx. For me that was 30 years! With any luck I have a very slow growing cancer! For current patients on Ibrance, she intends to keep them on the drug. New patients will likely be given Kisquali. I also asked about going down to 75 mg of Ibrance to manage fatigue. I explained that we had moved here to be close to our grandkids and I want to have the energy to go to all their activities. Since I have been off Ibrance for over a month and feel so great, we will start at 100mg and meet again next month after my scans. If scans are ok, we can discuss the lower dose. She did say Ibrance at 75mg is as effective as the other doses! It is a natural prospect that if 75 is good, 100 or 125 mg must be better. I asked if there was a period of time I needed to stay on Ibrance before having a knee replacement. She explained that as long as I was on anastrozole (or letrozole) that I was still receiving treatment as those were the standard of care drugs before Ibrance became available. In all, I was very happy with the appointment and learned alot
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This is all so interesting with the studies about Ibrance. I had my scans today. I'm 2 years and 3 months into my MBC diagnosis and am currently stable. Don't get me wrong - I'm glad, but feel guilty for those who are NOT stable, especially moth. I know I "shouldn't" feel guilty, but there it is.
Carol
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Carol, I am slightly different in my feelings about my overall stability. I am very lucky for the stability from the neck down and relatively few brain issues as well. Been going for 7 years now.
I do not feel guilty but that does not mean I don't feel extreme compassion for those who are struggling with treatment, SE from treatment or life in general and overall pain. I also feel for people dealing with varying degrees of depression, I am one of them too. Progression is also really sad to hear about and having to try other treatments. Moth among others is on my mind a lot also.
I don't think you should feel guilt, keep thinking your kind thoughts as you usually do but let yourself enjoy being stable. Everyone here is happy to hear someone is stable and it can perk some of us who are feeling down about our current situations.
Just my opinion.
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Hi Sadiesservant. I had to stop my career in 2017 with my diagnosis. I could not do the lifting anymore, and the 12 hour shifts. And my supervisor was not kind about me being off for doc visits, scans, etc that comes with MBC. I am glad I stopped work--- due to the SE I have. I know I could not do the job anymore. I went on LTD, and then SSD. I have less money now and have to live more frugal than before, even though I have always been frugal. But I still mourn my career loss. I was 47 at "medical retirement" and now I am just 51 (soon 52) and I should still be working and living like a normal 51 year old. I still dream about my job and my co-workers and wake crying.
Goldens- I got 4 years out of Ibrance, before I moved to Lynparza. So I think I got a very good run from Ibrance. Hoping Lynparza does good for me too--- 9 months so far.
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Goldens, I would say you do have a slow growing disease. I’m similar in that it was 16 years between my initial diagnosis and MBC. My MO said he expected me to do well for a good long time (not very specific but…). I am now 5 1/2 years since my MBC diagnosis and have had liver mets for a year and a half. In some ways, I don’t think I have done as well as he expected (unfortunately Ibrance and my bone marrow didn’t like each other) but this continues to be a slow moving beast. The downside is that traditional chemo is not very effective so, beyond Xeloda, I have not had much success outside of endocrine treatments and may now be resistant. Hoping that’s not the case and I can squeeze out a couple more options, perhaps in a clinical trial.
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I’ve been on ibrance for 56 cycles and I’m hoping for many many more . I ve already had the big guns chemo so I won’t be going down that road again. I hope they can somehow come up with a cure for any type of cancer. The time has come
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goldens - thats very interesting and tallies with what I have picked up over time from my MO. I stayed on letrozole for the month of the mastectomy/node removal and went right back on on schedule, though at the lower 75 dose because I was having such issues with counts and fatigue. The idea was to keep me on it as long as there was no other growth but unfortunately one of my spine mets reactivated itself and grew quite a bit at some time in the four months between scans, which was, as usual, a surprise to everyone. Ive said before that it just didn't feel like the drug for me, although it clearly is for others!
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Mel, I am similar, no other systemic chemos for me. My older DB and SIL already know that once the Herceptin fails, I will not touch another chemo and would ask to get the hospice stuff underway. I am alone and have no desire to live dealing with chemo again. I have always felt this way as well. I am at peace with dying early, I don't have children or that to consider hanging on for.
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I love to find out that someone in our group is stable. Hearing that you have been stable going on 7 years is very encouraging to me. It has only been a 1 year and 4 months since my De Novo diagnosis. Last month my PET scan showed no active disease, for which I am very grateful. I, too, do not feel guilt, but do feel both compassion and empathy for those who are struggling with this disease.
As I often say in our support group sessions, a positive attitude is very important in "fighting" MBC. Negative thoughts are something I don't entertain. I hope that my attitude and support has and will help others.
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My third creation!0 -
goingtobeatthis, I think a hopeful attitude helps, telling yourself you are living with cancer not simply dying from it makes the burden a little easier. After 7 years and 6 after brain surgery and brain radiation, I am still here. Lost my livelihood and miss that but at the end of the day I am realistic. I know what I want when or if the time comes to make those decisions. Treatments are better and a lot of it is luck as well. If a hopeful, positive attitude gives you enough energy to deal with life in general, then that is a good thing. I knew someone at my cancer clinic who was told she was dying and she was the most miserable negative person but that even helped as she was also very stubborn. She went into remission and I have not seen her in about 3 years. Whatever works, do it to make your life easier.
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Mel, lovely picture. HOpe you are getting those framed and hung in your place or someone else's.
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just wanted to say I'm physically better and working to keep improving. Mentally I'm a bit all over the place and trying to ascend a logical way. Thank you all for private comments here and on email and on ig. On my blog I posted an article about survival stats - this is one of the things I feel I suffer with. Reality remains bad... some of you might not want to read it but I've been unable to ignore it because there's weird outlier publicity and it causes me pain
I'm scared to have my tests. Next week will have liver tests ( & i guess some chemo) Don't know when to do scans. I want to live a long time but at same time I realize that's not real. and while I know it, I'm unable to adjust emotionally that there's an end. I'm on psych meds, maybe that will help.
Hugs
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thinking of you moth. Sending hugs
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sadieservant pocket duty for your appt Monday.
Mae the she shed is fabulous. I hope you report from there on Monday.
Molliefish waving hello.
I struggled with many jobs I disliked but always made friends in those places. My last couple of jobs I was forced out of. The first time was very emotional and it took a whopping 3 years to work again. The last time with cancer returning in 2017 I knew immediately that I would leave. I did volunteer a few times after I left but the new director was jealous and insecure so I quickly left for good. I enjoy my free time but I know if I were younger it would impact me more. I knew that working wouldn’t enhance my QOL and May expose me to stress that would compromise my immunity. It was a financial loss but I spent more money on clothes gas and eating out while working then now since I’m hime
Mel your painting is bright and colorful. You should frame and hang them all.
KBL sending hugs. When is your upcoming appt?
Moth I read your blog. Thanks for sharing all that sobering information. I hope you make an impact on treatment and research priorities. The way social media is these days you never know how far your voice will reach.
Waving hello to everyone
Tanya
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good to see you Molliefish. Hugs for you too!
Hi Tanya!
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Moth, glad to hear from you. Will be in pockets for all your tests and results. Glad you are at least physically feeling better which is half the battle. Hope psych meds help with the mental part of all this.
Before I got cancer, when I lived at the condo, I was able to work from home taking calls for a cell company. It was wonderful not to have to take the bus, had time to walk before my shift. It was lonely because if a call was stressful, there was no one next to me to bounce it off. My mom hated it because she always felt the TV downstairs would be too loud, it never was though. I lasted the first year of cancer but when the met grew rapidly and swelled my brain, had to hang up the headphones. It's too bad because I was able to watch TV or do surveys between calls and I almost always scored 90 to 100 percent quality. I could not work that kind of job here, too noisy and not sure after all this time if I could handle abusive customers anymore.
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Mel, I love your latest painting! How long does it take (or am I not supposed to ask) you to complete one?
Moth, it's always good to see your updates. I tried responding on your blog but couldn't figure out how to do it. Not your problem, I'll just respond here and/or on IG. Your article was so interesting. I just saw a commercial for some "miracle drug" that talked about survival stats. I don't even remember the intended use of the drug, but I immediately thought of the article and the graphs you shared. We all hope we're on the "good" side of the stats, but as you pointed out, we don't hear from those who were on the bad side.
I'll be anxiously awaiting your next results. I hope they're better than you hope for (if that makes sense.)
Extra hugs for you.
Mara, molliefish, tanya, sadieservant, and all the other lovely ladies here, I wish you a peaceful evening and a restful sleep.
Carol
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micmel that's beautiful!
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