My Husband, My Life, My Love, My Family, My Cancer
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My MO called with scan results - generally stable, nothing new and nothing grown. Have to keep an eye on the brain and liver though. I am now diving head-first into the pumpkin spice season and available for pocket duty.
Mae, treatment is going fine except a little HFS, manageable. I think our DHs have alot in common. I worry mostly about him without me. He would love to retreat to a cabin in west Texas and just drink whisky, if he could. I really need to get to a mental place where I'm ok with progression. I'm reading "When Things Fall Apart" which is helping some.
Mara, I'm going to try vinegar in the laundry. DH shared an article about dryer sheets not being so good, but he hates when I bust out the vinegar for cleaning purposes. I'll tell him "Mara said". In your pocket for the 18th.
Thanks everyone for the warm welcome! Nice to have this space to share with those who understand
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Congrats Kikomoon on the stable scans.
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Welcome, MoCoGram. I'm also so happy to see those who are a bit shy stepping out of their comfort zone.
I'm on pocket duty for anyone who needs it.
Booboo, I hope your new treatment kicks ass.
Kikomoon, so glad you're stable.
I'm sorry if I've forgotten anyone. Today was a very busy day. I got so much done and had ime with my grandson. I'm pooped, but it's a good pooped.
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Kikomoon, Congrats on your scans, and welcome to the living room. 😊
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ladies~ I just wanted to echo and tell you how pleased I am the lurkers/readers are coming to join us. It's always so good to know that there is always someone to listen. Always someone chillin in the living room just decompressing or just a place to let rip some anger. I've been known to do this sometimes. But over all I really care and would not wish this awful disease on any of you beautiful souls.
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kikomoon, I don’t think anyone really gets to a point where they’re ok with progression. However, after living with MBC for a while, you can get to a point where you might expect it. My first was the discovery of brain mets, just a couple weeks after my initial chemo/surgery/radiation and I was devastated but they’ve been treatable and now it’s more frustrating than anything. The flare up of my initial bone met got my attention but did not take me down.
DH suggested we do something together soon, so mini trip plans are being tossed around, maybe fishing, a weekend RV trip to a state park, perhaps a day trip somewhere. I’ll let you all know once we’ve decided.
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Mae~ more footage on the critter cam!
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Kikomoon, you won't regret it. If he needs a laundry smell, make up a spray bottle containing 1/4 fabric softener to 3/4 water. Will give a nice freshly washed scent without being heavy. Some of my old crusty towels are soft now.
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Welcome to all the new posters. It's always great to see new people join in. Not much to update on my end. I had some XRays done on the 6th and the fracture in the right femoral neck is stable. It has even started to heal a bit which is great. I see the ortho oncologist on Tuesday but it's looking like I won't need a hip replacement right now so I am pretty excited about that. In any case, the rod is stable and the pain is better. I'm doing the American Cancer Society walk 35 miles in October challenge. Couldn't help but think of Mara when I signed up. I'm sure you'd have that done in about a week or two. I am up to walking a mile and a half now before the pain gets the better of me.
I think it was Laurie that mentioned she liked to browse TJMaxx. I do too. I wandered through with my mom today. I didn't get anything but I like to smell the candles. They had a rack with macramé plant hangers and my mom got a chuckle out of those. Back in the 60s she took a macramé class in college and used to make them as gifts. Now they sell for $12 at TJMaxx. I don't hang my plants so I didn't get one but I think it's fun how different styles come back in to fashion.
Mae - awesome mention in the article. You do have a beautiful name. I think it's great that they are bringing awareness to the fact that younger people are getting this and very cool that you are an advocate for it with such a great attitude. I was 41 for my first diagnosis and my MBC was discovered a year and a half later. I have a friend from nursing school who is 39 and just finished treatment for stage 3. She had a complete response to chemo so I am in hopes for her that she doesn't have to find herself here too.
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Karen, KBL, (and anyone I missed),
Thanks for the good wishes. Lynne and I are on the same regimen, so hoping we can both kick back the cancer. I have a PET scan scheduled for next Wed., and it'll be the first scan in awhile. I know there has been progression since I quit treatment in the Spring, so I'll need to brace myself for that. I could definitely use some pocket support. Thank you.
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Kitty,
Thinking of you and wondering if you are still in hospital? I really hope they can figure out why your blood pressure keeps spiking. Prayers for you, my dear.
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Thanks for the warm welcome everyone! And I'm glad others have joined in as well, Kikomoon and MoCoGram. I'm originally from PG County, MD but live in Texas now. Boo I hope the treatment works for you and I'll be in your pocket for your scans, with gummy bears! Kiki that's great news on your scans!
So I hadmy second Lupron shot Wednesday and check in for cycle 2. Turns out my WBC went back up to the normal range during my week off! So I get to start cycle 2 today at the same dosage!
Happy thoughts and hugs to everyone
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I am not doing too much today, laundry, housework and a grocery run with older DB as well early this afternoon. Other than that, random walking throughout the day.
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Katyblu, howdy from Houston 😁
Emac, thanks so much for the kind words.
Good morning to all and hoping you have a nice weekend ahead.
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Hello everyone, welcome all the new ladies to Mel's living room.
Well unfortunately I'm still in hospital, I have a gallium scan scheduled for next week to try to narrow down the infection that is causing my temperature to spike as soon as the paracetamol wears off. My oncologist is pretty confident that it's not chemo related so at least I don't have the added worry of changing treatment. The echo gram of my heart also came back normal, my oncologist thinks that possibly the steroids I've been taking for the 3 days after chemo may have made me more susceptible to infections.
I'm not sure if anyone wants my germ ridden body in their pocket so I'll be cheering from the sidelines. Laurie and Lynne I hope this new line of treatment gives you the results you're both hoping for.
Mae, I hope you enjoy your little mini break away with DH. To everyone else try and have the very best weekend possible.
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Kitty, jump on in my pocket this month if you want just as I am in yours hoping to get out of hospital. Glad it is not chemo related. I have my brain MRI to make sure the enhancement is not more mets and prepping for my testimony in the trial this month.
Katyblu, glad your WBC is back up
I found this on face book which made me laugh, love words spelled backwards that are funny.
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Kittykat- You had me stumped with gallium scan and paracetamol. I googled the words. Gallium scan is a nuc med test to find areas of cancer, inflammation, or infection. Had not heard of that scan before. Also, paracetamol is acetaminophen or Tylenol. Those I am familiar with, just not paracetamol. Hope they find some answers soon.
So this is not cancer related, per se. But I posted a page back about my ortho issues and not having surgeries DUE to the cancer. Well, I made an appointment to see my ortho doc about my hip and back pain. I saw him today. I have known him for years and he does not sugar coat things. He walked in the room and said "how you feeling". I mumbled something to the effect of "oh ok". He said "like shit, right". He asked about my sister--- last time I went to him she was in Hospice. He gave his condolences, then said "now you can concentrate on you". We discussed my continued hip pain. I had an MRI of the hip in July/August that showed moderate to severe arthritis and a large effusion. He had suggested an aspiration of the fluid and a cortizone injection. I did not do then due to my sister, and also nervous about being off blood thinner. So today he said "well things have not changed and I still want you to have this done".
He said I am my own worst enemy. True. I hate taking nausea meds (Zofran) because it makes me groggy. I hate pain meds (he gave me tramadol before and it made me feel sick). He said to take the Zofran before the tramadol to help with the nausea the tramadol causes. He said I just need to try to help my QOL. He again said that I am not a surgical candidate-- for back disc issues and for the hip. "Conservative treatment" for me, he said. So BevJen no surgery for me.
I think I need to quit complaining. Just suck it up. Nausea with cancer meds, so what. Pain with ortho issues, who doesn't have pain. I appreciate his candor, but also kind of aggravated me too. Like, why come to the office when he already said what he wants me to do-- take prescribed meds and get injection. I know he cannot fix me. I guess just hurts to hear the truth.
I guess I will be doing the injection soon.
Maybe I am a glass-half-empty person. I dwell on my aches and pains too much. He also said that I have a lot of time on my hands (not working anymore) and that is not good for me. Also, maybe true. Maybe I need to just grumble to myself in the privacy of my home, but say "I am fine" on here or when talking with people. I don't know.
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Candy - hoping the procedure that the ortho suggested will help you with your hip. I take tramodol at night (it doesn't cause me nausea, but I just take it at night so that i get a good night's rest). So maybe taking it at night would work for you? Also, have you tried CBD oil? I ordered some and take once daily. On the box, it says it helps with nausea as well as other things. It does not cause me to feel high or groggy or nonfunctional in any way.
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GoKale- I did try the tramadol at night, but just a couple of times. This was before the new cancer med that is making me nauseous now. The tramadol did cause me to feel nauseous and gave me a headache. I am up a lot at night--bathroom and restless, so I was not just zonked out, and did feel the nausea and headache.
I have not tried CBD oil. I am iffy on the "standard" treatments, lol, so getting something not FDA approved, that they sell at a convenience store or gas station, seems real iffy for me. I do have a friend here in my town with MBC to bone and has a lot of pain. She is trying CBD pills. She said she started on a lower dose, then upped the dose. She said it didn't really help her pain, but did not make her "high" feeling either.
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you need thc with cbd to get a high; cbd itself is not psychoactive. I have a CBD/thc blend & microdose with it occasionally at bedtime.
My son made a nice dinner for us last night. This morning I popped into my metastatic zoom support group & I'm in a treatment chair now - it's immunotherapy day.
It's a long weekend here - Cdn Thanksgiving. We're not doing anything special, but I'm glad dh will get a break. His mom was moved to a new rehab place & we're hoping she will have more services there & more physio so she can move back to her assisted living home.
Hugs everyone
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Candy, it's hard to suck it up when you are in constant pain and I am sorry surgery is not an option for you. I think doctors don't appreciate what people live with when dealing with chronic pain. It is hard not to complain too given your situation and all you deal with, mental and emotional stress. It is an awful lot.
If you need to vent your pain, do so if it eases some of the stress on your shoulders. Changing our inner thoughts is tricky, I have to do this daily myelf for different reasons. If venting your issues is not good for you, try dealing with the pain. As far as zofran goes, the pill can be cut if that is how you take it. Eg, if 4mg or 8mg, both can be cut in half to minimize grogginess while helping the nausea. Not sure how many times you might need to take it in a day but just a thought to help with the pain med.
I had a good time with my older brother when he took me shopping, so nice to just be with him and talking to him, hit the packed Costco, found more seasoning, maple and steak and a few grain salads and 2per cent chocolate milk for really cheap as well. Got 6000 steps just from that trip alone which was nice, when we stopped at my neighbourhood grocery store, I kept going to get one item at a time to clock in more walking to put in the cart. I also treated myself to a chocolate bar with almonds. Looking forward to adding the grain salads to see how I like them. I do wish I had an extra freezer to put stuff in. Only other thing I am doing is trying to bleach one of my wigs with hydrogen peroxide and baking soda, we will see how it goes.
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Getaway trip plans are falling into place. I reserved a beachfront RV spot in Corpus Christi for a few days the week after next. One day will be seeing the USS Lexington for DH and another will be the Texas State Aquarium for me. We’ll leave a day free to enjoy the beach, fishing and crabbing. Last mini vacation and beach trip before heading to the cabin (hopefully in just a few weeks) to work on some final construction before it gets cold. Asusual there will be pics, honestly, you all couldn’t stop me, even it you wanted to, lol
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Mae, that sounds like a lot of fun, and I can’t wait for pictures.
My daughter decided to get genetic testing. I didn’t really think anything would come back because my brother (with breast cancer) and I didn’t have any mutations. Did I think about my husband’s side? Nope. She came back with a Chek2 mutation. I was already scared she was going to follow my path, so I need to not let this play with my head. Poor thing now has a blood clotting disorder from my side of the family and Chek2 from my husband’s side of the family. I pray she doesn’t ever suffer from cancer. My MIL died from lung cancer. I now know what may have played a role in her getting it. She didn’t smoke. Now to tell my husband’s siblings so they can get tested.
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I think if you look far enough, you'll find some kind of cancer. It's the number two highest killing disease of humans. Heart disease being the first I believe. Cancer weasels it's way into every family somehow However distant. My daughter also has to be tested withmammogram early because I was denovo. No braca gene. I just hate how it effects so many beautiful families and people!
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Cancer was in our family. My grandfather had bone cancer and father had colon cancer. No breast cancer in the family to my MO pointed out there is a link between colon cancer and breast cancer and that was like the cause. Only other cancer I worry about is lung cancer since my Mom passed from that. Game over for me if another cancer presents itself.
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My dad passed from lung cancer at age 59 and my sister from lymphoma at 66 only 6 weeks from being diagnosed.
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It’s amazing how many families suffer with this horrible disease. My aunt died of lung cancer, uncle was thyroid cancer, MIL lung cancer, me and my brother still living with breast cancer, my other brother renal cell cancer and also died very quickly after learning about it. I’m sorry for all of your losses as well.
My grandmother was healthy as hell and lived to be 96. She did end up with macular degeneration way late in life and was virtually blind when she passed.
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Candy - I find it interesting that your Ortho would not consider you for surgery. Of course I don’t know all your details but despite my severe scoliosis in the lumbar area along with severe osteoarthritis in every nook and cranny of my lower back AND having MBC, every doc I’ve seen has said if I want surgery, they would do it. This includes my Ortho doing bilateral hip and knee replacements and an Ortho spine specialist willing to do a procedure to relieve some of the pain caused by stenosis. I also have had every injection available in my lower back to try and relieve the pain. My MO referred me to the pain management clinic at her university hospital, to a particular doc who works with her cancer patients. Have you ever considered that route? Pain is a bitch and affects my QOL more than MBC. Of course in your case, you’re now dealing with a new treatment protocol with its own side effects. But I encourage you to do everything you can to make life better. I’m fortunate that I have a pain management doc who actually prescribes narcotics, which now that I had my knee injections, I never need. I also saw a pain management anesthesiologist who works primarily with cancer patients, and she is very willing to help me with pain management. She described my low dose narcotics as baby steps and said there are bug guns out there when needed. I am lucky that I don’t have side effects from these low dose pain meds and I know many people do.
I was the first in our family with breast cancer. Grandparents on both sides lived long lives. Father and brother had prostate cancer, brothers had metastasized to bones. Our son-in-law’s aunt died of colon cancer at 44. His mom and one aunt are religious in getting colonoscopies. Other aunts and uncle are not. The new recommendation of getting a colonoscopy 10 yrs prior to close relatives dx would mean our SIL should have had his first one at age 34. He is now 37 and has not had one. I have pleaded with my daughter to talk to him…..need to plead some more.
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Goldens- I don't know. Maybe it is rural area thinking, I live in a rural area. Maybe if I went to a "big city" with those specialists they may say "Yes you can have surgery". But, with limited resources-- income and support system-- I need to stay close to home. And, to be honest, do I want major surgery on my shoulder, then back, then hip. I don't know if I want to face that. With MBC the doctors and procedures never quit. I just had the thyroid biopsy (needed it to confirm no thyroid cancer and it really was a simple procedure) and I thought "I am tired of being poked". Before the thyroid it was the liver biopsy (NOT easy at all). Now, if the Lynparza doesn't shrink the liver mets, my MO wants me to do the Y90. I don't even really want to do the aspiration and cortisone of the hip. Just leave me alone. Know what I mean? I want the pain to stop, but I am tired of procedures. I don't know if I would mentally be up to a major back or hip surgery-- the hospitalization and rehab. Probably would have to go into a Nursing Home for a period of time as I live alone and only friends to drop by for a hour or two, not to stay with me.
I was even thinking of maybe a minimally invasive procedure for my lumbar spine. Maybe like what your Ortho Spine Specialist meant when he/she talked about a procedure for your stenosis. I kind of mentioned "maybe a procedure" to my ortho yesterday and he glided over it as not a choice.
And one doc did say she would do an epidural steroid injection for the back, but then looked on my chart at my WBC's and said No she would not do it after all.
I don't know.
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