My Husband, My Life, My Love, My Family, My Cancer
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Mae, hope the infusion went off uneventfully. 🤞🤞
Emac, that’s a lot to worry about, your parents (and your brother causing issues), and your mom’s vertigo. And, your own work life and your health. I know they say ask a busy person if you want to get something done. But I won’t ask you any favors, lol.
After a couple quiet days, my fever spiked again last night. I called my doc’s after hours line and was eventually told to go to the ER. So they ran a bunch of labs and tests and I got 2 bags of fluids. Tylenol, and Iv antibiotics. Went home a couple hours later with no fever and feeling better. I guess I should be glad for all they didn’t find—no covid, no flu A or B. no blood clots or masses in lungs, etc. But what the heck is causing this fever to keep showing up. Oh, and more blood cultures, just like last week at MO’s office.
I read as much as I can here. You all are a busy bunch! Happy belated bdays to Mel and Sunshine.
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happy anniversary!
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My infusion was uneventful, yay! No telling what SE’s I’ll have but chemo that I’m not severely allergic to seems to be kind to me, so I’m hopeful that whatever develops can be easily managed.
Great hospital food is an unexpected treat but MDA, with all its funding as a teaching hospital and through donations must be restaurant quality, especially with patients from everywhere in the world. I assume the other big hospitals are similar but it those little things that make me really appreciate being local and taking a lower paying government job, it set me up to be in a good place in an terrible situation.
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Mae, so glad it was uneventful. I hope the SEs are few, if any.
I was four pages behind as well. I’m thinking of you all
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My goodness - what a busy living room! I check in every morning while having coffee and with so many pages, I can barely remember what was at the beginning! I’m here for pocket duty with lots of Wisconson cheese🧀🧀🧀🧀. I can’t believe it is Memorial Day weekend. The kickoff to summer. I bought beautiful planter boxes for our front porch railings and 3 standing boxes for next to the garage. We went to a nursery yesterday and it had the most amazing selections and beautiful arrangements of hanging baskets I have ever seen. Place was so big I couldn’t walk the whole thing and ended up sitting while hubs went to look for selections. I wanted red geraniums so we found those and he picked another type of flower that would hang over in the hanging planters. He started planting yesterday but we had more rain so only got one box done. Hopefully he’ll be done today - gotta keep the retired hubs busy although he has been very good as my driver. My PT is helping and I can feel small improvements every day - just basically less stiffness. I don’t think I’ll be able to drive for another couple weeks given the hip replacement was on my right side. My husband got sad news - his nurse just b4 we moved from Ohio had been dx w/aggressive breast cancer - she was in her mid 30s w/one young daughter. 3 1/2 yrs later she had died from this damn disease. I’m also on a Facebook group for MBC and I am continually gut punched by the number of young women dx as stage 4. When I was first dx 34 years ago there was never a mention of MBC nor was there anything much written about it in the resources I read to learn about my cancer. Obviously I’m more tuned into MBC since I have it but I’m still overwhelmed by how much there is.
Onto a happier subject - any plans for the big weekend? We are picking up Dungeness crab clusters and beef tenderloin to take to our daughters on Sunday. Weather is supposed to be lovely. Wishing you all good times
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Goldens, you’ve got my weekend beat! Crab and tenderloin, yes please 😁
I love Wisconsin cheese, when I was there visiting my BFF in 2019 TSA were smiling at the many packs of bread cheese loaded in my carry on, lol
So far, so good today. I dropped the morphine Wednesday night and didn’t need a muscle relaxer last night, I’m pleased to be “regular” and no longer puking.
Today we’re running errands that were delayed due to my hospital stays and prepping to check out tomorrow. Lots to do but nothing too difficult.
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Goldens, what a delicious sounding weekend! I hope your DH finishes up those planters, and that you are continuing to heal from your surgery.
Mae, what a relief that the infusion went well, hope you have no more puking in your future. Wisconsin cheese, mmmm.
Kikomoon, how's your vision, is it still better? What a frustrating ER experience.
Happy belated birthday to Sunshine, and I hope your tummy can handle something delicious over this holiday weekend. Also, seems logical that the specialty meds would be in the specialty bin, you'd've thunk they would look there?
Elderberry, I chuckled at your comment that you and your DH haven't tried to kill each other. After 22 years married myself, I am sometimes amazed that we still put up with each other!
Emac, I hope you may be getting some time off soon? That rose is beautiful.
Relieved that it's a long holiday weekend, going to the local bakery for a mixed berry pie which we shall nibble at (aka inhale) with ice cream. Waving hello to everyone here.
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Mae, glad to hear your infusion was uneventful. Hope the SEs are minimal! I'm glad you're no longer puking. That's the worst for me.
Thank you for the birthday wishes!
Goldens, your garden sounds fun! I'm looking at some planter boxes – well, not exactly boxes. They're called "vego garden." I'd love to put one in my side yard or back yard to grow herbs or maybe tomatoes.
Here's the link: Vego Garden 24" Wide 17" Tall Herb Flower Garden | Twin Pack
They have different shapes and sizes. I like the longer size. (Mods, let me know if I'm not supposed to post a link.)
Carol
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Hello all. I have been reading along, but right now I am not going to reply to the posts, because I need to vent/express myself by typing out how I am feeling. I just need to write this out---
My scan results posted to the patient portal today. I had them done Monday and saw my MO for the results already, but they didn't flow to the Portal till today. So today I got to read the report for myself and see what the rad had to say and see the measurements of the liver lesions. I had shrinkage, as I already posted on here. I AM THANKFUL, VERY THANKFUL. I know things could be way worse. I read on here about those that are struggling--- brain mets/ new treatments/ elevated liver enzymes/ having to have ascites fluid removed/ radiation to shrink tumors/ etc/ etc. I know that someday that will be me. And for now I am doing good-- real good. As far as the cancer is concerned. That got me to thinking this afternoon about how I should live my life NOW while I am doing "good". But how???? I still FEEL icky. Nausea at times. Needing to nap (short naps) each day. The low white counts--- having to be somewhat careful about germs--- Yes I am a germaphobe and need to chill some, but there is a true risk with the low counts. Not just Covid, but any germs going around the community. I am an immunocompromised cancer patient still. I have been thinking about what I COULD do---- but I am stuck. Workforce--No, those days are gone forever. Out for lunch with a friend--No, nausea issues. I may feel hungry and eat a meal, but then afterward feel sick and stomach cramps. That would be embarrassing. Volunteering---No. The fatigue hits and I need to stop and lie down.
I want to be stable with the cancer AND feel good. Put a pause on the "cancer patient" and just be like it was before I got cancer. Not be stable, but feel like crap and cannot enjoy life even with being stable.
My church's Homecoming Service is coming in a couple of weeks. That is a yearly special service with special singing and preaching. And a wonderful meal at noontime. But.... It cannot be like before. Before I would dress up, in heels. Have fun. Eat a lot. Now...... IF I went, which I probably won't, it would be in comfortable clothes with comfortable shoes due to my arthritic hip hurting and walking with a cane. No heels for me anymore. I would be masked up with an uncomfortable N95 mask, while others are unmasked. I would shy away from shaking hands/ hugging. And have to see the pity looks from people. And I would not stay for the noon meal--- have to have mask off to eat (indoor meal) and would be concerned about feeling sick after eating. So the kitchen helpers would fix me a to-go container and make statements about wishing I could stay--- again being pitied.
I guess I am just grieving my old life. And wishing with the cancer being stable, for now, I could get my old life back for a bit until the cancer worsens. I am just tired of all this. Thanks for listening.
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Hi, I just posted this info in another thread so I thought I'd better make sure to update here too.
I had a long telehealth appointment with psychiatry this morning because I'm so sad & mad & just frozen... I'm going to start some psych meds. I'm super sad & mad about my diagnosis & my progression. I hate triple neg & how shit it is. There are lots of other thoughts which hopefully I will try to pull together either on my blog or IG in the near future but yeah... that's it. I'm just not well. Not well physically or psychologically or emotionally or anything.
m
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sf-cakes: I was once asked if I had ever considered divorce. We had been married about 30 years at that time. I replied "Divorce. No. Never. Murder?" followed with a shrug. My DH and I had been friends for about 2 years and knew each other through our various girlfriends/boyfriends. We were both without one when I told him I didn't want him to go home the night he was just visiting. Frankly, it was scary. Where we about to ruin a very warm friendship? It is the friendship that carries us through. I always say you cut your friends more slack than you do a lover.
candy: I don't know where you find the energy to keep the pocket duty list going so faithfully. Yes - to have our lives back to some semblance of normal. But stable is good. Shrinkage is better. It is a pity you cannot attend the church function. I don't belong to any church but I understand the concept of "fellowship" that goes with churches and their congregations.
goldens: your Memorial Day feast sounds super. I love cheeses, except those orange squares that taste like the plastic they come wrapped in. I finally got my front flower bed planted with wild flower seeds. There are plants emerging from my last year's planting. I let the flowers go to seed. I have lots of foxgloves. Doing battle with comfrey that has become a total thug in a small narrow bed in the backyard. I am going to have to pretty much nuke the soil and let it lie fallow for a year. My tomatoes are in pots so they will be okay along the fence by the bed. Most of the Province and certainly my city have banned Round-Up and other lethal herbicides so I have to go with citric acid and such.
mae: are you going home to the cabin?
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Oh Candy and Moth! My heart is breaking for you both. What a shit hand we’ve all been dealt.
Candy I get it. I'm so sorry you feel like you can't enjoy your shrinkage and life is so different, for all of us really. I wish I had something more helpful to say. Just that I get it.
Moth, I have no words. Just a big cyber hug, for what it’s worth. I hope finding the words and expressing yourself (and the new meds)will give you some peace. 💐💐
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Yes, cabin bound tomorrow, probably late afternoon and arriving in the wee hours or maybe crash at friends on the way, if we’re too tired.
I heard about a bunch of shooting stars possible Monday night, if it happens the view will be magic on the mountain.
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Oh, damn, damn, DOUBLE DAMN, moth! My heart hurts for you!
Candy, I read your words, but had no adequate response.
I hope it helps just the tiniest bit to know that we care so much about you both.
(((hugs)))
Carol
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Moth- All I can say is I care for you. I am so sorry. Please PM me anytime you need to talk. I will listen.
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Hello ladies
I posted a long response a few days ago and lost it or maybe its there so...
I've been reading along and this thread gets pages a day which is great bc we are always read by someone and boy do we need to be heard.
Moth sending you hugs. Thanks for sharing that you are seeking help for the sadness and angry. It's all just too much. Hugs hugs and more hugs.
Kikomoon sounds like you're holding steady with your treatment for now.
Candy great scan results. I hope you can find some things that you feel comfortable doing. It's a real challenge with all the things you have going on. Thankfully you have your cats.
Mel happy belated birthday! I hope you find that chair painting in real life at the beach and you sit in it!!!!
Rosie 24 waving hello.
Mae I remember you wrote something about acupuncture and someone else had asked about acupuncture a 100 pages ago. I get it weekly. It helps with pain nausea and my energy level. The b-12 shots that she gives me are in the acupuncture points. I feel better for sure the first day and then it wanes. Since my insurance covers it I am happy to go for the once a week tune-up.
Goldens yes I noticed too the young people who get MBC de novo. It's something environmental I'm convinced.
Booboo i get the faslodex shots. Tenderness at the injection site for sure but it subsides usually after a day or two. Theres a trial where it's a pill but it hasn't been approved yet.
KBL I'm reading along with you daily. Schools out for the summer so I'm looking forward to getting help in the garden. I give the kids roblux for payment. It's some coins for a game they play on line.
Elderberry Happy Anniversary.
Emac wow that's a lot of caring for you parents. It's a tough job so take help when you can. You still have your health appts. too. The rose is beautiful.
SFcakes waving hello.
Sunshine that's crazy that they couldn't find your medication. The pharmacy in my area seems to be overwhelmed with patients. It's always busy and as you said you can hear them answer the phones and put people on hold.
Waving hello 50's girl
Mara I cook my beans with the spices. If I use dry beans I soak them and boil them. You work with a lot of good flavors. Interestingly enough since my daughter moved in I notice she puts peanut butter in sauces and things like you.
Ladies I know I probably forgot some folks but I am riding along with you all in the living room. Memorial Day weekend I'll be home. I have to buy cat food tomorrow and maybe get some dirt for some plants. I really need to replant at least a half a dozen plants that have overgrown there pots but I haven't had the energy. And then there's the weeding. I did walk this morning.
Take Care all
Tanya
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Candy, yes to what you said: "I want to be stable with the cancer AND feel good." It's so damn unfair.
Moth, I hope psych meds can help. This whole diagnosis is such a massive emotional weight. I'm so hoping you can at least get some emotional relief.
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Candy,I’m so sorry for all you’re going through. I wish there were something more I could say, but I am sending you a cyber hug and letting you know I hear you.
Moth, I hope the medication can help. I’m sorry for all you’re going through as well.
Tanya, I just finished day 4 with my grandson up at our ten-acre property. If only I had the nonstop energy he has. Holy cow, I’m pooped. Lol. One more full day, and then we’re headed back home Sunday morning. I hope his mom is ready. I need a serious nap. Lol. By the end of the day, I’m taking two Motrin. My back is killing me. He’s having a great time, though. He loves it up here.
Mae, I hope you get to see the shooting stars.
Waving hello to those I’ve missed.
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Mara- how have you been today?
I have a lot of dried beans I’m too lazy to try but I’m not able to season the canned back beans to my liking. I’m letting you do all the experimentation.
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Candy and moth, my thoughts are with you. I HATE cancer! The way I try and cope is to say to myself ''I will cry and stay in bed tomorrow''. It does not always work and when more days are bad than good I will take whatever drugs I need to feel better. I hope you both (we all) find relief soon, hugs.
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Moth,
You are in my prayers. I applaud you that you are going to take care of your mental health like you do your physical health. Please know that we love you and are here for you.
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Candy and Moth - prayers for you and hugs. In fact I pray for all of us and then all cancer patients. I’ve always said the most consistent thing about cancer is that it is inconsistent. There is just no explaining it, how it hits, when it hits, who it hits. And when it does it is a crap shoot. So we put our boots on and wade through the crap. No one else understands it - just us. So vent away - that’s why we’re all in Mel’s living room.
Candy - have you tried the zoom meetings offered here for MBC patients? I attended a few at the beginning and then we were in the throws of moving and other medical issues so haven’t been back in a while.
Mae - bread cheese. OMG - so yummy by itself or with different toppings! For the uninitiated, bread cheese is a 1 inch slab of cheese that you put in a fry pan and gently heat till golden brown on both sides. The cheese doesn’t melt but it gets warm, softenedand so delicious. There are other flavors too - bacon, pizza, spicy…. I love to top it with savory or sweet depending on my mood. Will need to pick up one for this weekend.
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Morning all. Saturday morning here. Supposed to be sunny and around 80 today. I will have my windows open for fresh air to come into the house. Maybe sit outside to read. Gotta do laundry-- that is a never ending chore. Next few days are supposed to be around 90 and more humid, so today is the pick weather day. No plans for the Holiday weekend, duh, of course not. LOL.
Goldens- No I have not joined the Zoom group here. I am meeting with a Zoom group from my cancer clinic--- all different Stage 4 folks. Some with MBC, some with kidney cancer, endometrial cancer, etc. But all of us Stage 4. And we all live around here (well I am the furthest away at 2 hours). We meet once a week.
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Moth, I truly hope there is something to help your physical, spiritual and mental exhaustion that you are experiencing. This aspect of cancer is not talked about enough. Regular people don't have any idea what some of us go through unless they are going through something similar with other diseases or mental wellness issues.
Tanya, the last batch of dried black beans did turn out well. They are a little more chewy but soft as they should be. I did liberally season the water with my favourite spices and put the water from the boil in an old water bottle to be used to infuse pasta or rice when I use those often and they would benefit from the flavour as well. Can also use it to add to an egg, rice and beans dish I may have for breakfast.
Enjoy the sunshine Candy. I am itching to get out too. Really want to walk to the mall like I used to. If I do that, I would bring my walker as it is a really long walk and would want strategic places to sit. I know for a fact the reason I really stopped walking so much was due to the nasty fall I took that fractured my elbow. I need to get over it, watch that my feet don't cross in front of each other. My foot lifts all the time now so a wider stance may help keep feet from wandering in front of each other. We will see. I can also use the walker to carry the groceries in front vs behind. We will see, it is a beautiful day.
Oh my goodness, wish you guys could ship me your laundry, I would do it all for you. I did grate up some regular bar soap for hand washing. I boil the water and fill foaming containers as expected, gradually getting it all used up. Use some Crabtree and evelyn body wash at the bottom to make it smell wonderful. I use this soap for my hands and even in the shower. It does not necessarily foam as much but I still get a wonderful smelling clean for a fraction of the cost. Foaming containers from both a dollar store soap or Bath and Bodyworks. I bought so much bar soap, there are piles to use up and there is no real point having it just sit there. Grated a bar up this morning for refills and put in airtight container.
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I'll post more later in response to the others, but mara when I saw your name as the most recent post, I had this sort of flashback to when I was a kid.
Every day when my mom would pick us up from school, the first words out of my mouth were, "What's for dinner, Mom?" So, when I saw your name, I was thinking, "What's for dinner, mara?" LOL
More later. Our kids are visiting for the weekend.
Carol
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Mara-Do you think you could get some physical therapy to help with your walking? As I recovered from a broken leg, I worked with the PTs on walking. It was amazing all the exercises they had to train specific leg and foot muscles as well as my core. They also would look at my gait and give specific exercises to improve it. The other thing I am doing that helps with walking is Tai Chi. There is a lot of emphasis on being conscious of how you are walking, shifting weight deliberately both between the feet and from heel to toe. I know for me that walking outdoors, especially in the Spring, is a great mood elevator and I would love to see you back at it!
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mara, moth: dear Ladies --- the emotional, spiritual, mental aspects of MBC doesn't get much open discussion. Those Godawful ads on TV "We demand more time" and everyone is dancing, singing, opening stores.....They have HAIR, they have ENERGY, they are full of smiles. Hurrah -- small print: you don't really have all that much time.
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Moth- please know you are in my thoughts and prayers. Cancer sends us into a physical, emotional and spiritual spiral. How can anyone understand that isn't in this position!
Candy- cancer can lead us into a very lonely dark place. I do hope you will reconsider going to your church event . I know how important the fellowship is for you although it's been a long time.
Mara- I'm sending my laundry out to you! This includes blankets and comforters. Lol
I have never had bread cheese but it sounds so very good!!
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Moth - I have seen several of your posts on various forums and I haven't commented because I don't quite know how to say what I'm feeling. I wish I could just reach through the screen and hug you. I hate everything about this cancer and what you are going through. mTNBC is so unfair. Know that I am pulling for you and you are an inspiration to a lot of us with your IG and blog and dedication to research. I continue to pray for a miracle for you.
Goldens- I think it was you who mentioned younger people getting cancer. I have a friend I went to nursing school with who is just 32. She just finished tx for stage 3 ER/PR- HER2+. She has two adorable little girls. On one of her PET scans she had a positive lymph node show up. It's not there now, last PET was clean but at 32, what the heck? She has always been super active and healthy too. Her MO said they are seeing more and more younger people with this.
Candy - I grieve my old life too. I think I cope by not thinking about it. I do still work but I'm no longer trying to hit career goals like I was, I'm mostly just trying to stay working as best I can because I wasn't planning to retire at 44 and don't know how to afford that. I need my insurance. I'm a clean freak but not a germaphobe. I think that probably helps some. I hope you can find something you enjoy with your new stability.
Booboo - I think you are right about our hips. It is probably the rod and post surgical pain also that causes my stiffness in that leg. I think the body remembers trauma and it never quite functions the same after surgery. I have pretty good mobility with it now but the pain is still there at times and I have a knot of tissue at the longest incision scar.
I heard the best way to make God laugh is to tell him your plans. I was supposed to work Wednesday and this weekend. I ended up calling in because my back has just given up. I have been having increasing pain in my neck and lumbar spine but it's to a point now where I am not walking great. I'm also having a lot of pain in the T spine area around my fracture that radiates to my right rib cage. It's that deep bone pain, not the muscular pain I had been dealing with so I've been hobbling around. I'm better today and may attempt to go to work tomorrow and Monday but if I can't do it I guess I will wait and see what my scans say on Wednesday and Thursday. I don't know. I'm doing the best I can stretching things out and sitting with the heating pad on my back. The rug just got completely pulled out from under me on this one.
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Tanya, I did cook the dried beans in seasoned water and kept it. Using it in the fried beans and eggs meal. I used it instead of mayo so my bran and other seasonings did not make things too dry. I also will keep bean liquid to cook up pasta or rice in as well. My breakfast today consisted of 1/2 black beans, egg. Cooked them in a pan starting on high then turned to low heat and covered. Poured bean liquid which was already seasoned into the pan as well. Infused a nice tasted including the egg which sucked it up. Heated some beefless ground in microwave, it burns in the frypan. Added my wheat bran for more fibre, some sloppy joe seasoning, salt and just put in a little more of the bean liquid to bind things but did not add mayo or my queso. It did taste good to me. I will cook the dried beans using my last method, rinsing dry beans, bring water to a boil, dump in dry beans for two minutes of boiling, soaking in the hot water, another rinse and then cook them on a simmering temp with all the seasoning. I do collect the liquid produced when cooking. They are much more tender and not bitter. Saves me soaking overnight. I also plan to make a bean spread for an english muffin. Toast with garlic on top and spread a blended bean on top, just to give some variety to my beans which keep my anemia away.
Chicagoan, I still use the walking poles for balance when walking around the neighbourhood. I plan to get out this weekend with them again. It would be easy to carry those around with me. Perhaps just use for balance more than speed. Nordic type walking could be done elsewhere, plenty of free tracks or parks to practice with. The wide stance and conscious lifting of my both feet. I can also go to a flat road on the side streets to keep up the longer pace. I do use the poles a couple of times a week, even just going up and down my parking lot if I am practicing speed. I would go back and forth down the hallway sometimes too. Just not consistent enough. I have always tripped here and there but could pick myself up when younger. These issues were around from when I was much younger. I just need to have a mantra that I will not trip, use the poles for balance if walking shorter distances and the walker if I crave a longer distance walk and be aware of my feet. Today my workout will be several bags of garbage and finally taking a portable washer that has been using up space in my front closet for a long time.
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