My Husband, My Life, My Love, My Family, My Cancer
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Emac- I value your assessment of my situation. It is multi-dimensional. Yes, Covid and the germ factor. Yes, the Stage 4 dynamic and that others cannot fully understand our situation. Yes, I do shy away from doing things with friends. But, Yes, they also decline when I initiate the activity too. Yes, my texting friend works a lot, and having a day off he probably needed a mental health day to do what he loves- work on his classic cars. But, maybe it is because he is a guy and doesn't think like us women, I was frustrated he did not come up with the idea that he could have asked me to lunch (outside) or thought of me as his friend and how isolated I live. I guess I wanted him to come up with an idea to reach out to me versus me saying to him "HEY I AM LONELY CAN WE DO SOMETHING TODAY?" Like, open your eyes and see I am reaching out.
And me being out of the workforce anymore just compounds the problem. If I was working, I could get the socialization I crave from going into the job. Now, I am home all the time, a retired person- at the age of 51, with no feeling useful to mankind. Yes, I could volunteer. I did that before Covid. But Covid changed that. And I don't feel well enough to do that too. I was talking to a church lady-- she is 76, but healthy. She volunteers by helping others-- taking them to the doctor, helping them in their homes. She is also in a volunteer group that meets out of town monthly. She is going out of town today, for the meeting tomorrow, and will stay in a hotel tonight. She is busy, busy. But, I don't feel like doing all that. I posted on here I had bowel problems the other evening, out of the blue. And the fatigue is where I need to rest most days--- and, Yes, I try to exercise to help the fatigue side effect.
Yesterday I had another "Hum" symptom. I woke as usual. Felt fine. Showered and dressed. Then could not get warm. Added a fuzzy winter button down sweater. Sat in the recliner with a fuzzy blanket. No other symptoms. Just could not get warm. It was sunny and 80 degrees. I thought about turning on the furnace but did not. I took my temp a couple of times-- normal. Then about 3pm it was like a light switch and I shed the blanket and sweater and was warm again. Fine since then. What if I was scheduled to volunteer at something. And woke like that and had to cancel and maybe put someone in a bind. That is why I hesitate to sign up for things. I just do not feel well anymore.
I will not give up. I am too stubborn for that. I just get discouraged at times.
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Rosie, so sorry to hear of the progression. I hope oncology comes up with some great thing for you
I had a busy Saturday & I did too much really. Sunday I didn't feel well at all for most of the day. Everyone spoiled me with lovely gifts for Mother's Day but I just decamped into bed with various aches & pains. It's a bit better today so I'm hoping it will finally go away.
Our little trip is 4 weeks away - I feel like I should start getting myself organized. I had a panicky moment yesterday when I was feeling so unwell & thinking, oh no, what if I'm like that for large chunks of the trip? Oh well, can't predict how things will go...
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Rosie your new scans are upsetting for sure. I'm not sure about being positive and negative in different areas but I seem to remember someone having both on another thread. Hopefully your team of doctors will come up with a treatment regimen that can work together with what you're doing already.
SeeQ I talk with my mom, sister, daughter and a few friends daily on Messenger. I like it because we can see each other and I look forward to it. we read a book but talk and voice our opinions throughout. It feels like a real visit. My husband said we should write a book about the book club. He gets entertained but usually leaves. (It was good seeing you today)
Emac you are super busy. Does the tub caulking bother your back? One project a day is a lot but I'm proud of you. My project is usually outside in the garden and ongoing. I never get finished just done with something.
Denny10 painting is hard work. Prep and clean up are exhausting let alone actually rolling the ceiling. Great job- 3 more walls to go. You may be finished sooner than you think.
Kikomoon I hope you enjoyed your brunch!
Chicagoan a mile in 30 minutes is great after all you've been through. I think we can all remember when we could do things stronger and faster and now I'm celebrating with you that mile is complete.
Mara I'm glad your mothers day was pleasant. I didn't do much today either. Just regular chores and I've been working on a puzzle. I need to get a better table for it because I can't sit bent over for too long without back pain.
Mae It was great seeing you and Chris today. We are all in your corner. Did you flash the puppies? It was so quick I didn't see them.
Moth do you feel similar side effects after treatment? I remember planning vacations in between treatment and how I usually feel after day (whatever number). Vacation and traveling makes me feel better and something to look forward to is tonic. I'm hopeful that the vacation will be a big distraction and enjoyable.
Waving hello to all.
Tanya
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Geez, got an email from the property manager. Sometime a week or two ago now, I was supposed to be having my light fixtures updated and in future a new toilet put in. The email said they were unable to enter my unit but I was home between the hours they said and no one called or knocked on the door and they want to enter on Wednesday when I have an MRI and Herceptin. I will not be home the later hours. Told the property manager about the appointments and that they will need to provide keys so they can enter my unit. I can't stay home from the appointments and they were already adjusted so I cannot change them. Sigh, Did what I could in emailing them where I will be. Nothing I can do and am not leaving my door open either.
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Mara, what a pain in the butt. So sorry you’re going through that.
Mae, it was so good to see you today. Everyone mentioned you and how much they hope for good news. There were also a few tears shed for you. You are loved.
Rosie, I’m sorry about your progression. I hope they can find a good treatment if your current treatment is changed. Thinking of you!
Candy, I’m here to tell you men will never be that perceptive. I’ve been with my husband for 40 years, and to this day he cannot read my mind. I have to ask for what I want. Please don’t hesitate to ask your friend. He would probably be open to it if he knew you wanted it.
I’m finding I only have time to come on once a day most days, so please forgive me if I don’t respond until a full 24 hours after I post.
Hugs to all, and I’ll be in anybody’s pocket who needs some company.
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Rosie - i was sorry to read of your Not Great scans. However, about the stomach thing - are you still on Ibrance? I had several nights of really bad indigestion on that (never could figure out what would trigger it) which went away when they put me on a PPI (lansoprasole) for surgery. You may want to consider asking your doctor about a drug to protect your stomach lining, but in the meantime, get in some liquid Gaviscon or Pepto! I remember trying to ride those events out with Tums and it just wasn't strong enough.
Candy - I had that super cold feeling (but not chills) the other week. Chalked it up to the Big L (this is when I managed a 97.1F temperature) as it passed after a few hours. It really is the drug that keeps giving, Ive been waking up the last few mornings with some muscle ache feelings that are new.
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Candy~Checking on your pain! Hope you’re feeling better.
Mara~ those people couldn’t hit the side of a big red barn. I mean get a clue people.
Mae~ yes you are loved. Thinking of you on your travels.
Tanya~ hello beautiful friend. BooBoo ~ you as well.
Living~ Gm to you.
SeeQ ~ waving hello
Goldens~ how are you today?
KBL~I usually check in once a day also. Makes sense to me. You do what you can. Or feel like it.
Sondra~ sending hugs!
Rosie~ I hope the plan that they come up with kicks cellular asses…..
Where’s runor been. ?
I don’t like that the page only contains like six posts before a new page before it was at least double. Makes it harder to scan back to read posts and address all I want. Please add some color mods. Our poor eyes.
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Hello to everyone, in pockets where needed as well. I know there is a lot going on for people here as well.
Mel, you are correct, they really are morons. Why would the property manager not show up with the electricians if I am not home or call me to say they could not get in. I will not be home after 245 is tomorrow since I have my MRI and Hercceptin and those appointments were already adjusted. The manager should be here when I cannot be and I will not leave my door open.
Not much going on today, did some laundry, some Paul Eugene exercise but this time, put a knapsack on my back with about 10 lbs to start with. Was harder to balance that way but made it through. I do this workout standing and since it is 10 mins it certainly helps the meal move along quickly. For anyone dealing with heartburn, if it is possible to move legs whether sitting or standing for about 10 mins, that may help some as it will leave the stomach much faster. I also recommend digestive enzymes as well unless there is a medical reason that this would be harmful. I was able to come off my heartburn meds and can eat pretty much anything again and my stomach was damaged with the constant steroids for a few months after being dx'd with my big brain met and surgery.
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Mel- Thanks for the shout-out. I am just frustrated with the hip steroid injection. I knew it would not "heal" the arthritis. And it did help with the intense pain. But I was hoping it would help enough I could get back on the treadmill or could do the exercise video. I still limp and use my cane and cannot move/exercise like I wanted. It has been a full week now since the injection, so I guess I am seeing the results I am going to see. Just disappointing.
How are you? How is the therapy? How is your fatigue? Are you getting to do more things like you want to do?
Not much here today. I am going to wash up my winter jackets/coats for the season. Record heat here today--- high in the 90's and humid. Next week down to the 70's forecasted, so better, but the cool temps are gone till November now. So I will wash up winter gear and put up for the season. Will read some on a book. Check in here. Quiet and by myself as always.
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Sondra, no, I’m not on Ibrance anymore. Moved on to infusion chemo. I think the stomach thing has come on gradually, but now I get this indigestion more often. The night episode could have been related to lying down soon after getting home from a big meal out and a bigger than usual alcoholic drink with grapefruit juice, among other things. I rarely drink nowadays, and decided I’d have one to celebrate Mothers Day with my family and also heading into my off week from chemo. So whether or not the drink was the culprit, they’re now associated in my mind and it will be awhile before I have that again! I’ll definitely try the pepto next time it gets bad.
Mara, Your pocket duty response was so sweet! I hope the repairs get done soon, without any more complications.
Candy, KBL hit the nail on the head about your guy friend not thinking to ask you to do something on his day off. I didn’t think of it myself, but after KBL said that, I realized I’ve lived it. My DH is a great person, but also needs to be told some things directly.
Tanya, nice to see you here. You always write such thoughtful and helpful posts.
I have a call in to get a call back about my scans from either MO or his nurse. I want to know what we can do to slow down the spinal Mets that seem to have appeared suddenly. Next week I have an in person appt with the doctor’s NP. I’ve met her but this will be my first appt with her. My mind is in a bit if a panic and I’m hoping getting more info sooner will settle me down some!0 -
Candy~therapy has been pretty good. I've been painting more, abeach setting. It's been fun. Fatigue is awful. I guess that's just the way it is. I'm sorry you didn't get more relief. I was really hoping you would ! Sending hugs.
Mara~ I wouldn't leave my door open either. Not a chance. I agree completely.
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Candy - You brought up some valid points and I can completely understand where you are kind of stuck between a rock and a hard place. I also agree with KBL, sometimes people have to be told things because they just think differently than we do. You are dealing with a lot and I can see why you wouldn't want to get into a volunteer situation etc. that you may not be able to do. I always hope that I am being honest in my responses but not harsh. Harshness is never my intent.
Tanya - I got the first layer of caulk off the tub before I got tired and had to quit. It does irritate my back but mostly it just exhausts me. It is going to take another round of scraping and a good wipe down before I can re-caulk it. I just don't have the endurance for things that I used to. The tub thing may take me a while. I am blessed to have a two bathroom home so I am using the other bathroom while I'm taking this in small chunks. I wanted to work in my yard but the last week or so we have had a wet pattern roll in and it even snowed a little on Mother's Day. By the end of the week it's supposed to do an about face and be near 80 and sunny.
I am a little freaked out about some post-menopausal bleeding I've been having. It's been off and on for the last few months and I saw an OB nurse practitioner who said the uterine lining was thin and there was nothing to worry about and to just watch it. Last night and this morning it got bad again. I see my PCP on Thursday and I think I may run that by her and get a second opinion. The clinic that did my ultrasound struggled with it. I ended up with a skin tear from them pressing so hard and I just kind of had an unsettled feeling about the whole experience. The bleeding seems to get worse after activity. Yesterday I was working on the tub and it started again. I have also had it get bad after I walk or am at work. It's one of those things that even though I know it's probably a benign bleeding fibroid like they say, it still freaks me out. Trying to talk my mind off the ledge I guess.
Moth - I hope your trip goes well. I'm excited for you and wish you good health for your travels.
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Hello everyone, I was pretty flat still on Monday & feeling not too well but today seems better so yay!
One of the things I got for mother's day was a t shirt which says "i'll be positive when there's something to be positive about" which cracks me up. I think I will wear it to chemo lol
I'm going to make a little to do list & hopefully get through some stuff. I'll see how I crash this afternoon.
Tanya, the side effects on this chemo seem to really vary from cycle to cycle. It is not a consistent thing at all....plus this trip is actually after my scan on the 20th, where I might find out that I'm switching treatments to something else anyway. My oncologist doesn't even know yet I'm going on this trip as I hadn't fully booked everything last time I saw her & then she was off on a long holiday for Ramadan. Hopefully we'll make it work somehow! I'll pack steroids if necessary to give myself a little upper lol
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I am not worried at all about tomorrow and if someone shows up. I don't intend to leave my place open, did my part by notifying the property manager that they need to let the electricians in and that I will not be home by 245 or three so they need to come by noon.
Candy, was hoping that you would get some relief as well from the shots. I am sorry it is not better for you as well.
I still have not done much today, mostly mobile games for a bit of money, surveys and that is about it. Feeling lazy. Oh well, going to get lunch and do another 10 mins of Paul Eugene. The weight in the knapsack was tough to do but I figure I can practice the balance when or if I ever decide to go to the grocery store myself. I've been terribly lazy for my outdoor walking.
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I don't know who of you will get this, but I get really excited about vacuum cleaners and containers. I recently bought my dad a Shark Stick vacuum. He wanted a DustBuster type vacuum, but I saw this one and ordered it for him. I put it together over the weekend and tried it out. It works great, and I'd love to buy one for myself, too. (Don't tell DH!)
The second thing I just bought is called a Trolley Dolly. I saw someone on the street with it and asked her about it. It's one of those rolling carts, but it has heavy duty fabric and really beefy wheels. I tried it today when I walked to the grocery store. It worked great, except that I got too much stuff and had to ask for an extra bag for the salad mix, bread, and two boxes of Swiffer cloths.
If I can post a picture of the Trolley Dolly, I will. Otherwise, check it out on Amazon. It was under $50.00 and I got it in blue.
It collapses down, too. I'm such a nerd, but I'm a happy nerd!
Carol
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Emac- We are totally fine. I am not upset. You were not harsh.
I have never been married, and I know I am not the marrying type. I would go crazy if I had to live with an air-headed, one-dimensional man. Having to spell out everything to them like a dunce. I don't have enough patience for that. Just dealing with my guy friend I have can be too much sometimes. I like him, but, wow, he frustrates me sometimes.
And I do wish I felt better physically. My cancer is stable, I guess it still is. I have next scans May 23 so I am getting nervous. I just wish I felt better overall. Tonight I have a Zoom meeting at 7pm for a committee I am still on, with my Public Library (I have been with this volunteer thing for several years now, was in-person and now I do Zoom). I am sitting here by my computer so tired. I wish I could just go to bed early. I did my You Tube exercise video today--- more modifications with my hip pain, modifications on top of modifications but I did it. My hip is really giving me fits now.
Emac your post-menopausal bleeding worries me. Talk to your PCP Thursday. And let us know what he/she says.
Moth- Glad you are feeling better !!
Sunshine- I like the Trolley Dolly. I am a nerd too. I bought a new purse (online) and loved organizing my stuff from the old purse to the new one. I threw away some stuff and feel even more organized !!!
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I used to have something like that Trolley dolly as well for groceries, my only issue was when I was walking home from the grocery store, I dragged it behind me as I did not enjoy pushing it and my arm would kill me at the shoulder. I may rethink something like that but I have to find space or else I cannot have it.
Candy, good job on the youtube exercise video.
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Emac~I’ve had fibroids they can bleed up a storm. Hope you get confirmation on that soon. Bothersome. I know. Do you get cramping !?
Moth~So glad you’re feeling better today! Yay!
I like the trolley dolley! I’d use one for sure.
Candy~some people just don’t marry. I find it fine. Just like someone who chooses not to have children. My son said the other night he’s not sure if he wants them or not. Can’t say I blame them. It’s hard being with the same person day in and day out sometimes for sure.
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Thanks Micmel I will let you know. I think one of the things that worries me is the cramping I've gotten. It feels like menstrual cramps sometimes even though I know it can't be. I also seem to sometimes feel like I have to pee frequently or that it's hard to completely empty the bladder. LOL. TMI, sorry. I will let you know what I find out. It bothers me that I feel they weren't really able to get a good view of anything on the ultrasound. I do know my CT in February was clear of anything suspicious there except for some fibroids and I have another chest/abdomen/pelvis CT coming up in June.
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Candy - the Echo Show is an Amazon device that can be used to do multiple things, such as play music or games, watch videos, display photos, recipes, etc. It can also be used for video calling with other Echo Shows. Facebook has what I think is a similar device called the the Facebook Portal. Google probably makes one, but I don't know it. I don't think I can video call other, non-Amazon devices, but I can call my sister's and kids (or anyone else with an Echo by saying, "Alexa, call so and so" from my contact list. I can also answer the calls on my phone (with the app) or some other connected devices (which I don't have). The concept is like Zoom, but easier (no meetings to set up, just call), and you feel more like you're in the same room.
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emac, it's not TMI.
Have they looked at your ovaries? I don't have a uterus, thankfully, but I do have my ovaries and cervix. I sometimes still have dreams that I'm having my period. Even in my dream I'm thinking, "But that's impossible!"I hope they find out what's going on with you.
Carol
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Mae, I do not attend the Zoom calls, so I did not hear your report on your latest brain scan results. I have read comments on the zoom thread, and it sounds like the news you received was not good. You have not discussed the results on this thread, and I apologize if I am overstepping my bounds by bringing it up here. I am sorry if the news was bad. You have always been so strong and show a great deal of compassion, understanding, and support to everyone here. Your input is appreciated and respected. In addition to your support, I always look forward to hearing about your experiences and adventures, and your sense of humor is so refreshing. I don’t know all the facts, so I am not sure what to say to you. I will leave you with these heart-felt thoughts. We are all here if you need us. I know your life attitude will help you through this, but we are all here to give you the same kind of support, compassion, understanding, and listening ears you have so selflessly given to us. There is a lot of love here for youYou are in my thoughts.
Hugs from, Lynne
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Mae, I was not at the Zoom call either so don't know exactly what you learned from your scan but I am in your pocket all the way. If it was bad, we will all be here no matter what. You do have a persistent attitude and I will get things done mentality which helps a lot but we will be here when ready to share or not share your news.
I have my MRI for the brain AND my Herceptin after so will be busy at the hospital. Planning to take a bus or possibly UBER due to it being almost 30 celsius. Not interested in being all sweaty. Any extra exercise will be done at home.
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My heart hurts for those who are hurting. I'm so thankful for this living room.
Carol
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Mae~Is family. Just like you are 50’s….. you ladies are amazing both of you. Mae chose to share the news with us on May 4th. We all love and support each other I want to take away everyone’s pain and issues so bad I can taste it. You ladies are always on my mind. BooBoo as well. Bigbhome having issues. It’s blowing my mind. Hoping good things will start to show themselves. I worry about us all. What we go through. I’m holding you all close. At heart
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Mel, Thank you for straightening that out about Mae. I thought maybe Mae had received information on Friday about next steps. I will blame my lapse on mbc in general, old age, or chemo….take your choice. I am concerned about Bigbhome. Everything seemed to come to a head so quickly.
Booboo, I hope you are doing well. Do you have a treatment plan going forward or will you continue without treatment?
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50’s, you never overstep. I mentioned previously that the Brain MRI was bad. I had to delay the move by a few days to go back for a Spine MRI, additionally an appointment popped up for a neurologist consultation with the brain and spine center and the tumor board is meeting and discussing next steps. Lepto seemed nearly certain this time but I received a call last night that the spine is clear. Yay but I’m stumped. Something is coming but I don’t yet know if it’s new rads, new chemo or what. I’m in El Paso today for treatment as scheduled and I’ll continue as usual until I hear otherwise, just another day on the cancer coaster.
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Oh, I am glad to find you all here! I keep getting a "the discussion boards have experienced an error from which it could not recover" message and I thought we were gone. So frustrating. I do miss the old site.
Mae - in your pockets. I too appreciate your attitude through all of this and hope that the tumor board comes up with something that is both effective and tolerable for you.
Mara - in your pockets today. Also wishing for the management/construction people to pull their heads out of their collective rear ends and get something done for you.
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Mae, “yay” hardly seems strong enough for no lepto Mets. WOOHOO, YIPPEE, somersaults, cartwheels, and the happy dance are all called for
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Well I got a nice surprise today. I was doing my metastatic support group per Zoom (offered thru my cancer center) this morning when someone knocked on my door. It was a delivery person with a vase of flowers. From my Church. I came back on the Zoom call and showed them the flowers and said "I wonder why they sent them, nothing is going on". One member laughed and said "you say that as we are meeting with Stage 4 cancer". Hahahahaha.
But it was a nice surprise. I called the church receptionist and she said they are doing that each month. They pick the name of a member and send them some flowers, as a pick-me-up.
I would post a pic, but can we do that anymore with the site being messed up?
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