My Husband, My Life, My Love, My Family, My Cancer
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We had no goblins, princesses or monsters coming for candy. We are outside city limits in a fairly new development where houses are on 2 acre sites. Only 7 houses and only one w/ young kids. Means I didn’t have to buy candy and then proceed to eat half of it b4 Halloween, requiring another trip to the store 🤣.
Had my virtual visit w/MO on Friday. She agreed to decrease Ibrance to 100mg dose next month to see if it would help w/fatigue. She also told me results from scans now go to Mychart as soon as they are read by radiology. Prior to this, she would either send a message thru Mychart if results were good or make an actual phone call if there was a problem. Thankfully never got a phone call. Also grateful that I didn’t have to wait for an actual visit to learn results. I told her I had no problem seeing results right away, regardless of outcome. Bunch of scans after new year so it will be interesting how quickly scan readings get loaded.
It is extremely windy here and our 2 yr old golden loses her mind when it’s this windy and the leaves blow. It’s so comical to watch her try and go in multiple directions at once. Hope everyone here can find something to smile about today! 😊😊
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It is windy here too. We are also told that there will be snow squalls tonight. Needless to say, I am staying in, was going to walk a long one today but the weather stinks.
I did go behind the couch where my shelves are and pulled out my winter cleats for boots and shoes. If it does snow as much as they say, there may be snow and ice to contend with. Have to get used to walking on it.
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It finally stopped raining here and tonight is quite warm and humid - low 60s right now, so I threw open the back doors to air out the house a bit. Very comfortable, considering a short walk. Supposed to cool off to low 50s for a high rest of the week but CLEAR and SUNNY thank god!
Partner is watching the Vikings - Packers game and says its snow flurries. I miss the Upper Midwest some parts of the year, and even maybe those early snows before the holidays, but come January I'm always thankful the worst I have to contend with is feeling damp in my raincoat or strong winds if a storm comes in off the Atlantic.
Goldens - I hope the dose reduction makes you feel less tired!
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Hello all.
Church service online today. Called a couple of friends and talked for a bit. Took out trash--tomorrow trash pickup. Windy !!! and cool here-- in the 40's, but the wind makes it feel colder. Sunny with blue skies though. Upper 60's, around 70 forecasted for Wednesday. So not cool for long.
No trick or treaters here last night--- never do. No kids in my neighborhood.
Another month now--- November. Seems time just flies by anymore. Faster and faster. Like a sand hourglass and the sand just keeps flowing. Scary in a way. My mind always goes to the 5 year survival stats for us, and I am now year 3 (as of Sept). Try not to think that way, but hard to stop the thoughts.
Hugs to all.
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It is hard not to think about survival stats for sure, I have been on this train for over five years now. Soon it will be six years this coming Feb 2021 when I was first dx'd. I have largely gone beyond thinking about when I will end and just do the best I can now. I have felt that way at least 3 years. Life can be hard but I have to make my way through, day by day. I do my surveys to earn money so I can keep more of my disability and have decent food I enjoy eating or my laundry supplies I love so much. Small things keep my mind off of the dark cancer or grief over my mother and brother who are gone. Focus on the ones I have left and just live life one day at a time.
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It's beautiful and sunny here! I think we're forecasted to hit 17C officially but I'm sure will be higher in the sun. I raked a huge bunch of leaves and swept up some pathways. Olive got zoomy while I was raking so we played a bit too. It would have been a nice day for one last spin on the water but we thought of it too late (& honestly we have too many things to do) so instead we're winterizing the boat (well, dh is. I just stand around going "yeah, good" and helped him park it lol).
We upped my taxol back up to max this week & omg, am I ever feeling it. Yesterday was the first day in a long time where I thought about the hydromorph I have in the cupboard. I didn't end up needing it so far but I'm glad I have it on hand. Also have no appetite. Blergh. Oh well, just 2 more weeks and then I think we'll switch to abraxane. Hope that's easier on me.
It's All Saints Day & tomorrow is All Souls - the day for remembering those who are no longer with us. My mother will be going tonight to light candles on the graves.
hugs everyone!
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Hi, everyone. I’m back from my vacation, and it was not the best. The weather wasn’t great for the first few days, and then we got almost a direct hit with Tropical Storm Zeta and 50 mph gusts while sleeping on a cot in a metal building. I can now say a cot is not something I should be trying to sleep on. I didn’t get much sleep in the seven days I was gone. My husband doesn’t understand why I’m so exhausted. I won’t go into all the other details of what went wrong because it would take up a whole page. I was looking forward to the leave change, but it never happened. We were too early this year
I’m back to my own bed. I tried to take a nap earlier but couldn’t sleep. I will be taking Zquill tonight for sure.
I’m thinking of all of you and have caught back up. I started on Page 582. Lol. This page does move very rapidly.
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Moth,
Seems everyone is tired and weary....of COVID and Cancer. I used to be such a cheerleader on this thread...now I can’t get up the energy to type anything here most days.
I emailed my MO today to tell her I think I am done with treatment. I just cannot tolerate any more of the toxic stuff she is prescribing. My body feels like someone has beaten me. I have no appetite, and just cannot continue down this path. Not sure what she will say, but I am ready to stop the madness.
Sorry friends for being so depressing. But I really am down today.
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Booboo Laurie
I’m so sorry to hear this but I know you have fought and had some terrible side effects to contend with. Whatever your decision I’m here with you my friend. Dealing with cancer sucks. The Covid is a monster. The politics and isolation are all a heavy weight. Pray on it and see how you feel afterwards.
Tany
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Laurie, I too can empathize with what you are going through having read your posts over the last little while. You have certainly been through the wringer. I am sorry and will think of you also. The MO will have to simply accept if you decide to be done with the treatments. Perhaps there will be something else she can suggest without the horrible effects though at the end of the day, she will not be the one taking the drugs and trying to deal with SE.
To be honest, if I was told to switch to a different chemo, I most likely would decline it being on my own. SE and what you all go through is beyond what I could do by myself.
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I can definitely relate to feeling that way Just to be free of the waY we feel. I emphasize beyond words. I understand you. I hope you know I am holding your hand even if I can't be there is person. It does make you wonder when we have all had enough but, sit a spell and know you're loved very much. You're a very strong woman. Hugging you.
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Laurie, don't ever be sorry about unloading what you are going through, we all have difficulties but for some of us, like you, too many things have piled on and we all have down days but they are worse when we are sick too. I hope some time off drugs allow you some semblance of a life.
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Booboo, I'm sorry your treatments have been so difficult. When you no longer have any QOL I can see making the decision to stop treatment. I agree that you shouldn't hesitate to vent or share serious thoughts here. We're your friends and care a lot about you. Please keep letting us know how you're doing. 💖
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Hugs to all of you.
(((Booboo))), we're especially here thinking of you today/tonight.
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Boo - whatever you decide to do, you know you have the support and encouragement of the ladies here. Even if you aren't up to posting, we are thinking of you.
Candy - I keep a paper monthly calendar taped up above my desk so I can reference quickly and keep track of appointments better. It always saddens me when I have to take one down and put up a new one, but it feels like August was ending just yesterday.
Woke up with the usual sinus headache I get every time there is a big windstorm/wind event as a front moves in, but at least I can see blue sky and sun
It's going to be a tumultuous week for sure, best wishes to all.0 -
Hello Ladies~. So chilly here this morning. Wow. Wind and all. Yuck. I just woke up. Coffee in hand, I wanted to come and let BooBoo know I’m thinking of you and wanted you to know.
Hello to everyone. On this Monday. Ick0 -
I just logged back on and read the posts from yesterday.
Booboo- My friend. I am sorry I was not online as you posted. I support your decisions. Let us know what your MO says-- maybe still treatment, but something easier. I pray you find peace in whatever decision you make. PM me anytime.
KBL- Glad to see you back. Sorry your vacation was not enjoyable. I was hoping you were having fun.
Rough nights sleep last night for me. Back pain. Took Tylenol but didn't help. May nap this afternoon. Trying to stay positive today, but already having a tough time (too early for depressing thoughts, sigh).
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Laurie, still thinking of you this morning, thought about you last night. With what you are dealing with, it is so much to deal with.
Candy I am sorry you are having back pain, that really sucks when it happens and you do not get the sleep needed. I also understand the link between poor sleep and depressive symptoms. Happens to me all the time, bad sleep means almost 100 percent the next day will involve fighting thoughts of why didn't I go first (before Mom), why am I doing this when I am alone (I am not completely alone, older DB and family). Those days are exhausting because I know these feelings are not real, just pent up sadness coming to the surface. I have to actively think my way out of them and that is hard.
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I am going out today, looks decent after last nights howler of a windstorm and snow. Does not look like the snow has stuck but I pulled out my traction cleats I wear for winter walking. I will probably pick up some extra sneakers that slip on and off so that I can have one pair fitted with the cleats and another pair to change into. I can never get them to stretch over my shoes at the store. Easier to change shoes at store. Also going to start walking in my boots too. Get used to the heaviness.
It is going to warm up and be sunny this week so the snow we got will not stay but did not enjoy the howling winds.
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booboo, I hear you. After the bad SEs I had with Piqray, for the first time I thought I can't do this anymore. I feel so good being off it a week that I almost don't believe I have cancer and I fear restarting it. Today I have a Zoom call to discuss restart with reduction.
Tanya, you asked pages back about me & DH quarantining. We were staying far from each other in the house, wearing masks when close, but we mostly just stayed home for 2 weeks except for medical appts. Today is day 14, and all clear thank goodness.
(((Hugs))) to everyone struggling with hopes of better days ahead.
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Laurie booboo - I hear your weariness. Come lean on my shoulder a bit while we hang on this couch & I keep refilling your tea cup. You will make the right decisions but I'm going to say one thing: I suspect you're still grieving your little dog. Grief distorts everything. Some things get dampened, some amplified. Pain tolerance, energy levels are all affected by grief. So I'm not saying it's not real - it's real, but it might not be forever. And your MO might have some tricks left.
hugs
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Had not even thought about her grief increasing problems, good thoughts and advice Moth.
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I completely agree about the grief. I feel it with my Tag Makes me feel weak. You need a break from that medicine and to re group your body and it's strength.
Very astute Moth for sure.
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Mel, I know it is still very hard with Tag for you as well.
I am glad Laurie will have a break and hopefully there will be something that can help her gain strength while off these drugs. I do still think some MO's forget we have to live on these drugs when they are prescribed and there should be more flexibility to drop dosages or more options given quicker on drugs or supplements that could help deal with the SE. Drugs may work for some but a lot of times, the cost of the SE is far too high for people to deal with.
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Booboo1, I am so sorry to hear the heavy weariness in your post. I don't have a single word of wisdom, only sorrow that these issues are what anyone has to face. As others said, maybe your doc has some hocus pocus up their sleeve that will make treatment more tolerable. It can feel so horribly isolating to be alone with these thoughts and feelings. Everyone reaches out to you across the many miles with good spirits that seep in under doors and windows to wrap you in love and strength and support for whatever your heart tells you you need to do. Hugs.
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Thank you, Candy.
Booboo, I’m thinking of you. Virtual hugs.
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Booboo, I understand how you feel. I have no words of wisdom that will make things better. I wish I did. We endure many unpleasant, sometimes painful, SEs from the treatments we are given. We sometimes surrender to them and tolerate them because we think that it is worth it or because we don't want to let others down. The fact is, we alone know the limits we want to set. Only we have the right to determine when enough is enough. Sometimes we just need a break. That might be the case for you. Maybe a break in treatment or a change to something else will help. You have so much happening in your life right now. SEs alone are enough to wear you down, exhaust you, and diminish your QOL. Unfortunately, you have also suffered the loss of a dear pet and are living through the curse of COVID-world. None of those things is easy to manage, and when you combine them, they are overwhelming. I hope you are able to take a break and recover some of the energy and good feelings you lack right now. If you decide to stop treatment altogether, that is your right. Whatever you decide to do, you have many friends here who will support you.
I am sending you virtual (((hugs))).
Hugs and prayers from, Lynne
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Wow. I’m overwhelmed with your posts. I can’t say thank you enough to all of you. Moth, I thought about the way I am feeling and did actually connect the grief I am feeling. You are absolutely correct.
I think I must have scared my MO because her office called first thing this morning. I have a telehealth appt. with her tomorrow morning. She really is awesome. Love that woman.I also love you all for your kind words. Mel, still thinking of you too. Hoping every day gets a little better for us as we miss our furry babies.
Tanya, Mel, Mara, Moth, Candy, Rosie, Sondra, Bliss, Runor, KBL, and 50sgirl....may God bless you all. We are connected in a way none of us want to be, but I’m sure glad I have you in my life.
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Booboo- Hugs. We are connected in a beautiful way. I thank God for this group.
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Laurie, I feel the same about all of you as well. Sometimes, ideas can also come out of what people suggest, like the grief playing a part where others may not have thought of that. I do hope you and your MO come up with something that honors you in whatever you decide or possibly better offerings from the MO that may be tolerable so you can live life again.
I know I feel the same about this group, I come and dump not serious problems most of the time and people are kind and listen, or I talk about my laundry and surveys, meals and walking that makes other people's eyes glaze over. I also try to be helpful in what I know about from experience I have had. It helps me to know if I ever help people. You all add a valuable dimension to this single person's life and that is so appreciated.
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