My Husband, My Life, My Love, My Family, My Cancer
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Hi everyone, I was listening to the radio as I was driving yesterday. Bill Withers ''lean on me '' came on. The words immediately made me think of this thread. The lyrics are so appropiate and made me smile!
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Waving hello to all and welcome to newcomers. This is the place to be, thanks to Mel for inviting us. In pockets for all with scans and all needs. And a thank you to all for caring so much. We are blessed.
Quiet here today. Genevieve inherited a guinea pig to add to the crew. Still has one white mouse, other went MIA. Two cats and two dogs and a bearded dragon that she dresses up. Kids are closer to getting their RV remodeled and then they will move. sigh. DH had his heart echo and cardiologist visit, no restrictions. He never offers further info and doesn't care to inquire from doctors. He had his blood test today, hoping still stable that he doesn't need to start chemo for non-hodgkins-lymphoma. Can't imagine how we'll function in the future. He does all the driving, grocery shopping, bill paying and most of the cooking (lately).
I hope everyone has a peaceful, painfree day.
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Emac, I hated losing my taste! I still remember when pizza from my favorite place turned on me, I was so upset that I cried in my office and didn’t come out for hours. Only ramen and candy were good throughout chemo.
bellelove, yes, we’re back and enjoying our friend this week.
Trying to get more work done on the cabin but it’s going very slow, ugh.
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I’m turning in for the night. I want to wish everyone a good night and peaceful sleep. I’m really tired so I will take a zolpidem to sleep tonight.
@micmel I’m so grateful to have your welcoming living room to come to and “be” with everyone sharing their journey here. I just want to say hi to @bellelove70 @anx789 @mocogram @denny10 @wren44 @elainetherese 💙
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I finally got the results of my scan, when I had a face to face meeting with my oncologist. He had been waiting for the consultant radiologist, who was holidaying in Rome, Italy. The results were mixed: shrinkage in lungs and breast , other bits stable. My liver had tumours with shrinkage but some growth in others. My tumour makers are up too and they have always been a good indicator of what's happening , so another change of treatment. I am hoping vinorebine treats me kindly. At least I wont be getting steroids with this, such a relief , as I overreact to even small doses. Wishing everyone their best day and a good nights sleep.
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Thanks keris13
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Wren, I’m so glad your endoscopy went better than you expected. I was so nervous about my first one, too. I need another one, but I’m not worried about it. My pulmonologist wants to do a pulmonary lavage. I looked that one up and it involves anesthesia, so it should be ok. I Googled it last night at 2 am when I couldn’t sleep.
Denny, this group is the best, isn’t it? I love the song, “Lean on Me.” Good theme song for this group. I just read your second post. Mixed bag results can be rough. I hope the change of treatment does treat you kindly.
Irish, that seems like good new about your DH’s heart.
Mara, sometimes your energy just wears me out! (She said with a smile.)
Couldn’t sleep again and was coughing last night. Sigh… My friend is coming over this morning to teach me a (hopefully easy) crochet pattern.
Waving hi to mel, keris, mae, irish, and all the others I see in the living room. I love how many people we can fit in here. It never feels too crowded – just warm and cozy.
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Hi lovelies~ I’m sorry for mixed bag reports. It seems there is always something to worry about. I like “lean on me” it is fitting for our group. Not just friends. But the other family. The one we can spill it all out too. Realizing this is my life now. Even after 7.5 years of it. It never seems to sink in. I’ve lost myself, who I was is gone. I’m not the same. I’m deteriorating in front of my eyes. More fragile. More unbalanced, more tired. I realize that ibrance hasn’t been tested this long for patients taking it. My old onc told me I was the longest patient taking it he had. So I was the reference for alot of his patients. I wonder if he told them my issues. The mouth is the worst of it. Along with endless fatigue. I know each tx has some to go along with it. I think I’d deal with that no matter what. I’m going to nap. DH is back in town. Monday night , Tuesday, through Wednesday night, I have Theo alone. No breaks. It wears me out. But I love it. He’s getting bigger. He will be 4 months Saturday. We are hooked! DH too and he’s usually not like this with animals. He loved his Tag though. Theo has big shoes to fill where Deeohgee and Tag are concerned. Tags been gone three years this month. I still cry each day for them. Theo helps tremendously, but is not a replacement for that love and bond. Hope you ladies have a half decent day. Hugs to all!
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Mel, sending hugs for you today. Seven and one-half years is a long time for one med. I have been seven and one-half since diagnosis also but have been on four different drugs. Disease fatigue is a real thing! My major complaints on Verzenio are fatigue and diarrhea. I resonate with losing self. I have lost the ability to play my music…cello and piano… and no longer sing in the choir. I just don't have the energy. My Princess helps although she is my DD and DGD's dog. Still, she comes upstairs and lays with me a lot. Fortunately my DD cares for her so that saves me.
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Sending love from us Mods to this beautiful group 🤗
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Up with a little insomnia and neuropathy in my feet. I'm sorry to be reading about mixed results and struggles. Sending you all gentle hugs. I completed round 7/12 today of Taxol. My labs are also mixed results. Tumor markers are within normal limits which is great. We tested Ca 15/3 and CA 27/29. Unfortunately they also came back with 3% megalomyocytes and 1% nucleated red blood cells. My MO says this indicates bone marrow dysfunction but my other labs were within normal limits so he is going to watch it for a while as the only way to know what is going on is to do a bone marrow biopsy and he felt I wasn't really warranting that right now. I have labs again next week so we'll see what happens.
Thinking of all of you and thank you for the posts on Taxol. I'm finding juices, fruit, yogurt and popsicles taste okay. I can also do fruit smoothies and throw some kale in there so that makes me feel better. Cheese, bread and any kind of meat taste awful. And anything that should taste salty or savory tastes bitter. Mae pizza sounds amazing but that's pretty gross right now too. I can empathize crying over it. I almost did over some Chipotle the other day. It's definitely frustrating.
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@emac877 i hope you get your taste back soon.
@threetree sorry to read you fell and broke your arm. Ouch. I hope you heal quickly.
All are invited to soak in the hot tub. It has better be hot when I go out today lol. Yesterday there was a filter incident. I hobbled around five stores and nobody had it. Ordered online and tried to clean the filter better. We have very hard well water. It's just a little blow up tub but it helps. The hot springs in the mountains are best...here's one I have been to.
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Mel, glad to hear you are enjoying Theo and that DH is as well.
Emac, I sympathise with the taste issues, in my case was mostly when on my first chemo and a bit after brain surgery and radiation. I mostly drank carnation instant breakfast. This was before beans and stuff entered my diet or smoothees would have included spinach, beans etc.
I did shop last night, when the machines were busy last night, had to walk up to the high school. My brother was concerned I was in the road but no choice really as there is still a lot of stuff on the side that prevents keeping to one side, made it to the van at the high school and we proceeded to shop.
Unsure about today, may just stay home and earn some extra money, due to switching internet, I am tightening my budget which mostly means don't order takeout and save money if I want stuff delivered. I did wind up getting some canned vegetables, nothing fancy, corn and some peas and carrots and of course my black beans, got a giant bag of pancake mix, 10 lbs so lots of ways to make pancake bread. Planning a sweet version this morning with choc mild, an egg and 1/4 beans and wheat bran. In between laundry and everything, going to march and do a PT exercise, if I do those throughout the day, it becomes very easy to have it done. Thinking of some marching as well, good to keep leg lifting muscles up to date as well. Also doing another 5 pushups as I need to pace myself. I do find now that I am not as badly balanced as before and better able to coordinate my feet. Told DB as far as the brain concerns go, I am not having any until MRI next month. If it does not show anything then it proves that I need to keep doing the exercises.
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Beautiful picture! I’d like to go there thank you ! Thanks for sharing.
hello Mara~
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Mkestrel - Oh, I think that hot tub with the beautiful scenery is just what I could use right now, along with some very real in person conversation with the "ladies of the living room" (do we have any gents?) - and I'm not usually a hot tub sort of person. Just having one those mornings where I am "so at my wits end" over all of this. I'm sure each and every one of you can relate. That aside, I hope the rest of you are all having the beginnings of a reasonably good day, if not a superb one. Good thoughts to all!
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Three~I’m right there with and the end of your wit. You’re not alone, not even close.
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It's so nice to have company, Mel, and know you're not alone, but does it have to be like this and under these circumstances? Guess so.
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I guess weve all been dealt the crappie hands. Wrapping you in gentle hugs
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micmel,
I looked up the instructions that Bristle Health sent me after they evaluated my oral sample. Not sure these ideas would apply to your situation, but I would share if you're interested? If you send in your own sample you will get their treatment recommendations along with your results.
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Wen~I’d try anything at this point. It’s so kind of you. Thank you !
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Newest Theo pics !
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My heart is heavy reading about losses and restrictions that this cruel disease has bought upon our lives. @intolight I'm so sorry you can no longer play the cello or piano or sing. The stringed instruments have always been my favorite since I was a child. I hope you still find joy in listening to music. We thoroughly enjoy our vinyl albums, especially Jackie Gleason's music. He never played an instrument or sang, yet produced some of the finest music. @micmel Seven years is quite an accomplishment, yet I understand your quality of life has not been good. I wish that researchers could find medications that would be gentler on our bodies. I hope you can find joy in little things in life and of course, Theo.
Some good medical news today about Astra Zeneca's phase 3 trial for Er+ b.c. Looks like the results were very good, including extending patient survival. I can't recall the name of the other trial, began with an "M". Again good results of phase 3 trial.
On another note, I read the comments in a different article and found some posts by oncologists, stating that bone mets is one of the most painful types of cancer and doctors are not doing a good job of dealing with the pain. Oftentimes they are prescribing meds that just don't work for bone mets, or work minimally. A pain management doc said NSAIDS are the best, not opioids or morphine.
Here's to climbing into a hot springs or hot tub with a good glass of pink zinfindel. In pockets for all in need.
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Mel Thanks so much for the Theo pictures. He is so adorable and every time I see a picture of him, I get a nice warm feeling and a smile on my face,
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micmel,
Not sure this will help your mouth condition, but it may be worth trying. Also sending in a saliva specimen might be revealing. I was surprised by my results
Treatment Phase 1:
Bristle recommends brushing twice a day, flossing once per day, tongue scraping once per day, mouth rinse twice per day for only 2 weeks at a time.
"…mouth rinses can be extremely useful for “resetting” the oral microbiome. In some cases, using a mouthwash can help clear out dysbiotic microbiomes to make room for beneficial species."
They do NOT recommend alcohol based mouth rinses or chlorhexidine.
They do recommend "chlorine dioxide mouth rinse twice per day for only two weeks at a time."
Chlorine dioxide mouth rinse = Closys (brand name). I used this and found it very gentle.
"Why it works - Chlorine dioxide is a general antiseptic that functions as an oxidizing agent. Oxidation is the process where electrons are “stolen” from a target substrate, such as a bacterial cell wall, proteins, or DNA. This oxidation is extremely potent at killing anaerobic bacteria that can cause gum inflammation, halitosis, and oral microbiome dysbiosis. An important note with antiseptics is that while they are effective in eradicating pathogenic bacteria, they may also eliminate beneficial microbes in your mouth."
They did not recommend oral probiotics for me during treatment phase 1, but after this two week period, I did order their oral probiotic (they have their own brand). I haven't sent in my second oral sample yet.
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Ty wen~ I snap shotted the screen for reference. I’ll try anything
threetree~I get the same feeling when I look at him also. He’s super sweet also. We love him. DH is hooked!
irish~it will be 8 years in January on this line of meds 7.5 years it’s taken it’s toll. Ty for your kind words. Theo does make me happy.
cookie~ I’m constantly taking pictures of him.
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I'm not sure why NSAIDS would work for bone mets. They don't work for anything else.
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Irish, I was told by my onc to avoid nsaids. They are not good for my blood counts. You should ask your onc first. When my current labs showed some slight anemia, my onc told me to make sure I avoid nsaids and herbals.
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Morning all. Yet again, I am sorry I do not comment on each of your posts. I do read them. And I will say to myself "oh my" or "good for her", but I don't post back responses like I should. But I do care how each of you are doing.
I guess I am plugging along. My scans and new MO visit are in a few weeks. Of course, I am worried what the scans will show, and will I like the new MO. The daily nausea I had for a couple of months - June and July, I think- is some better. Still bouts of nausea, but not daily. Now I am having hair shedding. In the shower and when combing my hair. I have not messaged my doc. I read it can be lack of protein or vitamins, and I was not eating well when I had the daily nausea. So maybe that is it. I am trying to add more protein into my diet.
Do you all that are stable on your treatments get bloodwork between scans? I am scanning every 4 months. And at that time I have bloodwork and MO visit. But I am not getting any labs between, so just labs every 4 months. I wondered if I should get bloodwork more often. I am going to ask my new MO how he wants to handle it. My now MO seems ok with just every 4 month labs. But I wonder about monitoring TM's and blood counts.
Anyway, I do read here daily and care for you all. Mel— Theo is precious. I know my cat is my best friend. Animals are a gift from God.
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