My Husband, My Life, My Love, My Family, My Cancer
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Mara - I too am surprised you were not hospitalized, especially after the falls. I hope your recovery is swift and that you quickly return to your normal.
Shana - sorry you feel so bad along with another UTI. Rest up with a cozy blanket.0 -
Mel, ongoing love for you. Grief changes us, I don't feel I'm the same person since my DH passed.
Mara, your falls do sound scary, plus the incontinence. This has been an awful season of flu/cold/general respiratory virus yuckiness. Sending you lots of love.
Eleanora, I've been having pre-op appts to get ready for spine surgery, and one doctor (who just stared at my chart the whole time, typing, barely looked at me) asked how much I exercise. I replied, "well, since the MRI came back showing my vertebrae is 80% compressed, not at all". No response from her. Suspect I'll probably get an automated message soon about the importance of exercise. Good grief. The fact that I currently cannot spent hours in my yard, working up a delicious sweat, is really sad for me. I wanted to also say, "I still walk a lot but lately kind of dejected, with my head down. Does that count?"
MKestrel, I'm sorry about the latest spot of progression, and I agree too that your MO ordering scans before making any changes sounds good. Hope you were able to get some sleep last night.
Emac, I hate that you're still feeling weak and struggling. I totally agree with Chicagoan about grocery delivery, and the price basically evening out when all the impulse purchases in the store are taken into account! I hope you'll be able to plant bulbs in your yard soon.
Irish, thankful for your good news! More good news for you, please.
Cookie, I'm so sorry you have to rehome the pup, but someone else will give them a lovely home. Your own home has to be peaceful.
Shanagirl, your pug in that blue sweater made me smile so huge! I hope you feel better soon.
Yesterday when I was kind of freaking out with anxiety about the upcoming surgery, I sent the surgeon a message to see if he had any time for a quick phone call this week, and his office called first thing this morning to ask if tomorrow morning would be okay for him to call. Just the fact that they would respond that quickly makes me feel better.
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Oh my, quite a bit going on here!
@cookie54 Im so so sorry that it didn't work out with your home, but you are doing the best thing for everyone (and dog) involved. Will it still be possible to maybe get another dog once some time has passed and life has settled down a bit?
@shanagirl Excuse me, but is that pug wearing its own hoodie? So adorable!
@eleanora Good for you for reminding these folks that its super not helpful to be food/exercise 'shamed' at this point by the professionals. I see fat unhealthy people sat in the pub or walking down the street here yet Im the one with the damn cancer after being active my whole life. Yes eating well and exercising usually helps a whole host of issues, but its not a silver bullet. I still remember exclaiming 'but I eat salmon and blueberries!' at my diagnostics. Or the ladies we have lost who were committed to much more healthy lifestyles even. Not even Steve Jobs could juice and meditate himself out of his cancer, so why all the weight on us?
@mara51506 Im so so sorry to read about your troubles, especially as you live alone. It seems to be one thing on top of another for a lot of us this winter, but the flu is no fun at all and hospital trips are exhausting. Will your family be able to help a little bit? I know you want to stay in your small flat for as long as possible, but do you have any sort of contingency if that won't be possible, or a line where its time to move somewhere with more assistance? I hope you feel better soon and take care of yourself.
@chicagoan Unfortunately the only place in Europe that has high enough sun to make Vit D is going down to the Canaries off the coast of Africa and that is a 4.5 hour flight for temperatures a little warmer than here. Otherwise its Florida or the Caribbean since the Middle East is out and Im not keen on going back to Morocco. Ive thought about using up some of our Virgin Atlantic miles to do exactly what you are suggesting, we may just do that yet later in February once get past the school holidays hump. I need some more weeks to build up my fitness but once I feel confident Im headed in the right direction and pain is under control/diminishing then Id feel more comfortable booking something. Definitely need something to look forward to!
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Shanagirl - Are you referring to the fulvestrant shots? If so, I think I might be having problems with them too. Just ache and hurt all over. Low mood, no motivation. Big digestive problems too. Haven't felt very good since last round of fulvestrant shots earlier in the month. Keep feeling worse. Went to urgent care last Saturday and they sent me to ER. ER couldn't find anything of note, so back to the oncologist's office. I see the nurse practitioner tomorrow and will see what she has to say. I did hear from them this morning that the onc is thinking it may be treatment related. He hasn't been around for a few days and I think this is the first time he's been aware, since I started talking to the nurses about all of this last Friday.
I'm really sorry to hear that you are having problems too - no matter what they are from and I hope we both get these issues figured out real soon!
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I am remembering to stick to white foods, English muffins, rice and eggs
DB picking up a prescription for loperamide. Going to start with toast as my energy level will not increase without it. English muffin to start.
Crying my stress out and just miserable. Just going one step at a time.
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@mara51506 Oh my sweet girl, it breaks my heart to read what you have been going through. Weakness is not your friend. Try to eat and drink to keep your strength up. Hopefully DB and DSIL are checking in on you regularly. You have always been a trooper and fighter. I know once you get some strength back it will bring back your spunk, and resiliency.🙏💙
@intolight, I’m glad it’s a little warmer here you are, this is the time of year my grandmother called it the “January Thaw 😉which is only temporary 😊
@cookie54 I’m so sorry about your situation with Allie. I was in rescue for. Some years. I took in and fostered Great Dane orphans. I loved doing it and they. Always thrived. But sometimes they don’t always make a good fit with men…She probable needs to. Be an only dog with a woman, or a young couple. Don’t feel you’ve failed Jersey, You have been a bridge for her to have the right fur ever home.🩵
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loving the doggie pics.
Mara!!!! My sweet girl. I’m so sorry you got the flu oh dear. You falling 3 times concerns me greatly. I am so thankful you weren’t hurt. Rest up and cleaning can wait you need to regain your strength.
I finally found out I’ll be getting my mother’s. Ashes soon. Where she lived is down south and they experienced snow and ice and basically everything shut down which delayed her cremation. I’ve been waiting to have her home with me. I bought a lovely necklace to wear and she will be close to my heart for as long as I live. I have urns waiting for my siblings and my kids and her husband. I’m still really sad that’s she’s gone. It will be three weeks Thursday. Each day that I don’t speak with her wrecks me more. I miss her voice. I miss just talking about nothing. At least then we could talk.
i think of you all everyday and read along. I care about you all very much and I thank you for caring.
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Mel I am still thinking if you, I love that you all have a bit of her with you.
I did manage an english muffin, not dry but butter only. I do feel a bit better. Older DB picked my loperamide prescription and ginger ale along with extra Tylenol. I still haven't got the laundry done but hoping tomorrow finds me with more energy. In bed for the night
Still in everyone's pocket who needs me wearing a mask
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@shanagirl the pigs are super cute and I bet Sammy is a rascal! DH and I had English and French bulldogs, 6 of them from 2002-2018 and I know pugs have similar personalities, must be a fun house!
it’s warmed up to the 50’s here, hoping it stays that way, so I’m not stuck indoors so much.
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Hi all you lovely ladies. Thinking of each of you and hoping for better health and home matters.
@mara51506 Crying is a good reliever of all that frustration. One day at a time, sometimes needs to be one morning or afternoon at a time. Please get back to yourself soon. Don't let this knock you down. @threetree I'm in agreement about those darn shots. I think it changes the chemical makeup of our bodies so much, that we suffer from quality of life issues. It's been in the back of my mind to ask MO about lower dosage??? Don't know if that's possible. @micmel What a beautiful way to keep your Mama close to your heart. I always stop what I'm doing every Saturday night at 7 and think, it's time to call my Grammy. Mind you it's been almost 20 years since I heard her last words. She would always say, "well so long, be seeing you soon". Just didn't like a "goodbye" as she said that felt to final. @mkestrel I hate to hear the small progression, but I'd have other screening too before jumping the gun to new treatment. I took time to look at my latest Pet-CT bone scan and it read so much worse then the last one. Then I looked at a more current scan, MRI's and they looked so much better. That's hard to make decision based on two different scans, each with their own pros and cons.
When DH saw his MO he told the doc he had Elementary School Virus. We all laughed (really sick, so no very funny) but doc wrote it down to share. Hey maybe he'll send it in to the CDC to officially name some of this crud. We definelty got it form our 9 yrs. old DGD. Her daddy came today and announced he is sick and crashed in the family room. We are staying on our side of the house and washing door knobs, counter tops and hands a million times.
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Irishlove, I agree with you. I can feel slight improvement in the flu already, got plenty of buckleys expectorant and the other one that turns off the coughing at night. Also taking Advil plus Tylenol as instructed by doctors. That part of my issue will lift soon enough. As far as the white diet my SIL was suggesting, I am starting to get lightheaded without extra iron so will reintroduce lentils and quinoa but in small amounts since food has been limited but I want to buid up energy and remove lightheaded feeling.
Nothing planned today. I went to bed last night very early and slept almost 10 hours which was good and no trouble getting out of bed. Am finally starting to wash soiled clothes, SIL told me to throw them out, not willing to do that. Will be doing 3 washes each and disinfecting everything between washes. Main goals today, clear cat litter box, eat more and less whine to myself. I have everythingneeded to make symptoms feel better while I wait for it to go away and plenty of gingerale. I am also back in our system for possible OT which would be good. My brother and neice want to lower the risers on my bed to aid me in case I fall to prop myself up, problem is there is a lot stored under there and nowhere to store things, we'll see, they are trying to help.
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@mara51506 Nothing wrong with crying - I cry a lot too and sometimes its amazing how the pain that was bothering me ten minutes earlier just disappeared after. Doesn't always work but those emotions have to go somewhere when you are laid up and cant work them out in other ways. It sounds like you are sorted for the coming flu recovery - watch something nice and get well soon!
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I hear you, my flu is better, I ate lentils and popcorn and drinking gingerale. Feeling fine til property manager trying to get me to move again. I said no repeatedly, told her I am sick and that any talks go through DB as my POA. Even then, I do not want to move. They are lucky they were not here as I would be extremely rude. Illegal to try and get me to negotiate when I have a POA and all I will ever say is NO! I sent DB whole message thread, see what happens with that.
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Mara - take care, rest and eat. Don't push yourself too hard. It is good that you are sleeping and staying hydrated. Property managers should not be bothering you. I am sure your DB will deal with it. Focus on recovering from the falls. I am sending all my good thoughts to you - Kathryn
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The prop manager will be in deep poop. DB going to call them.
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Hi all you lovely ladies. I hope you all have good scans, stable or improvement in this battle. Looks like nicer weather almost countrywide. We will be 80 tomorrow. We opened a window or two today and the breeze was beautiful.
Mara, hope your brother finally gets that manager to leave you alone! sondraf, you are so right about a good cry. What a relief to be able to let it out.
Today was the best day physically and mentally since my diagnosis. I doubled daytime gabapentin dosage. It worked, but has left me drowsy. I slept 12 hrs. last night, and today struggled to stay awake. Better then fighting pain.
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Good morning ladies~ it’s been a rough week for me. Okay month so far. Monday I met my new oncologist and I did not like her and it didn’t go well. She wanted to change everything basically. When I scan. Bloodwork more, monthly. (I now give blood every six months) wanted to change me to Kisquali even though ibrance has worked for me for 7.5 years. (Monday was also the day 8 years ago I was diagnosed) I realize I’m having mouth problems on ibrance. But they have managed to calm the beast. I don’t want to change unless it stops working. She went out of her way to inform me that eventually ibrance will stop working. ( like we need to hear that, as if we’re not aware.) she talked over me. And was not reassuring in anyway. My other oncologist was so positive and complimentary. So I had to let her have it. I ripped her a new as*hole. She wanted to make me have more tests. I told her how stressful additional tests get for us stage four patients and that we tire easily and it’s not convenient for us at all. She asked me what the problem was about the testing. I wanted to hit her. I said “excuse me? Ever hear of PTSD. ???? How can you be an oncologist and not know how these things effect your patients. How difficult it is to do yet another test after everything we’ve been through already , how can you ask that ? “. She asked me if I’ve seen a counselor over this. ? I almost left my seat. I just told you we don’t want more appointments to go to. No one can help my mind knowing I am dying slowly. She then threatened me with maybe this isn’t a good fit for us doctor:patient relationships. I said well you’re not going to get an argument out of me. I don’t feel like you listen anyway. It was horrible. Now I have this doctor I don’t like at all. I’m not scanning more than once a year unless there is an obvious reason for me too. I’ve taken My lumps to get here. Ugh! So frustrating.
my mother has been cremated finally after some bad weather down south and is being over nighted to me. she should arrive today and I can get her In her urn and have her home finally. I can’t stop crying thinking that she’s finally coming home. Where she should have been all along. I’m waiting …. So waiting.
i Think of you all. Every day. Mara ~ them damn damn property people need to step off!!!! Enough pressuring you!
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Mel—- I am so sorry to read your post. Wow, that doctor needs to get a clue!!!!
I do blood work every 3 months. Why does she want to make yours monthly? Are your labs out of whack? Why not compromise and do quarterly labs? I get that you don't want to change from Ibrance, but maybe Kisquali would help the mouth sores, and it is still a CDK 4/6 inhibitor. And if you are ok with scanning yearly (I would want to do more frequently because the unknown is stressful to me), then your doc should let you do that.
How did she leave it? Are you going to be assigned another doc? When is your next appointment scheduled for?
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I do bloodwork every three months as well when I see MO as well.
So still feel very tired and weak, can do without that, I do believe that eating normal will be the cure. Also getting tired of meds beyond tylenol and cough supressant for night time. I still have not finished my laundry. Everytime I get up, I feel lightheaded and have to lie down. Will finish the laundry today but being sick sure has knocked the energy level lower than it already was which is pretty sad but hoping more food corrects that.
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Candy, Mel, Mara, and others: I guess I am a little confused. I do labs monthly. I was told from the beginning ( 7 1/2 years ago) that monthly labs were required to monitor the meds. (At the time I was on Ibrance and remained on it for 4 years.) Perhaps it is an insurance thing. I am so used to it that it has become a habit. Even now my oncologist puts in monthly orders. I never stress over them but use them to monitor how I am doing. It has become habit and I just do them and then go out for a nice meal afterwards. I am not criticising anyone, doctor or patient, just stating fact. When I look at my results I can see how getting them done every three months may not really matter much, but they have caught a change for a quick adjustment, and they are also required before I can get my Faslodex shots every month too. I used to see my oncologist, alternating with a PA, every six weeks. but she just moved it to eight weeks after my good scan results this last time. Just weird that different doctors require different protocols. I am on my second oncologist living in a second state (first California and now Colorado) with different insurance, and they both required the same thing. Strange…
@mara51506 Sweet Mara I pray for you everyday. I wish you were not alone and had more help. I am sure it is very difficult to navigate all you have to do alone. But you are amazing and an encouragement to me.
@micmel I pray for you too that you will finally get some peace with your mom's ashes near you. That can be so comforting. We had a horrible mix-up with my mom not being cremated for three months after she passed, and it was devastating so I understand.
Hoping we all are doing better with improved weather praying those in San Diego are drying out from all the flooding.
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Intolight- I know each MO and each patient are different. When I first started Ibrance, they did monthly labs to monitor the ANC and let me know if I could go to the next cycle of Ibrance. But since I am on Lynparza, we have been doing labs every 3 months when I do the scans and see my MO. The WBC/ANC stays about the same all the time. And they need a current Calcium level to give me my Xgeva shot (with MO appointment). We are no longer doing TM's, since mine were not a good indicator for me. So… I get it all done—scans, labs, MO visit, and Lupron and Xgeva shots— all done every 3 months. Then I am good until the next 3-month visit.
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Oh Mel - that MO needs some bedside manner knocked into her! You have every right to request a different doc.
I’ve been on Ibrance and anastrozole since 9/19 and scans/blood work have been every 3 months. I changed hospital systems and MO when we moved 2 yrs ago but testing timelines remained the same.Sending good thoughts to all - HUGS dear sisters.
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Oww _ Mel that MO needs to understand that it is about the patient and that talking over a patient is the rudest thing that she could do. A little bit of empathy wouldn't go astray, either. You know your body and how it reacts to things. And knowing that there is a disconnect between you will just make future appointments with her more stressful. Sending you good thoughts.
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@micmel Oh Mel I’m so sorry over all the stress you ar going thru Girl. It’s been a tough few weeks for you. A sudden change in your MO, wanting to change your meds & scheduling must have freaked you out.! Mel I am one who does not do change well at all. Is there a nurse navigator on your team that you feel comfortable to talk to about the anxiety and loss you’ve experienced recently and now are very concerned about your new Ocologist wanting to throw more change and loss onto you? I know that i am very secure on my treatment meds and scheduling. My monthly labs, and scans. Every 3 or 4 mths. Gives me the mental security I need to watch this disease and be reassured that I have been so stable this entire year..Because i know if I suddenly had some new progression or new met on my bone, My Oncologist would definitely adjust treatment and scan more. I pray you find some peace and calm. Can You give give this new MO another try, and ask he to have a consultation with you so you can pour your heart out about your grief, your fears, and anxiety, and ask her to take it slow with you? Maybe she doesn’t want to give your Ibrance a chance.to stop working and she wants to be proactive and stay on top of your mets to keep it from progressing because you’ve been on it for 7 years. All We cancer survivors can do is listen to our team regularly, and trust that they will do what is best for our treatment plan. I hope you feel better soon Mel🩵 Gentle hugs to you sweet girl.
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Oh dear god, I am going to explode if one more thing happens. I got a call about new OT person coming next week. That was good. Called SIL and she was angry at me because I said I don't want to move my bedroom around until OT saw it. She thinks my bed is too high and whatever. She took me saying I want OT to look at it as I never listen to them, yelled her frustration and hung up on me. DB will showup and bitch at me and I don't need this right now. I have property manager, app'ts and recovery to worry about and I don't need people hollering and giving me more stress.
Moral of the story is my health care outside of anything involving them directly will no longer be shared. I know better now.
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Sounds like there have been a lot of rough days out there.
Micmel-Sorry for the encounter with your new MO. It can be so confusing and frustrating. Maybe you could ask for a referral to someone else. I have thought about switching to Kisquali myself b/c it seems to be more effective, but I doubt insurance would go for that and like you, I've had 7 1/2 years of success on Ibrance so I am scared to make a change. I've never brought it up. Sorry she was so rude to you.
Mara-You are in a tough situation with your DB and SIL. Like me, being single, we do need to rely on siblings in emergencies but I would not like either of my brothers or especially a SIL telling me what to do. I think getting the OT's opinion makes the most sense. The OT is the expert on that kind of thing. I'm still concerned that you fell out of your bed. Do you have any idea how that happened? I hope you can keep regaining strength and feeling better.
Shanagirl-Hope that you are feeling better too.
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Hello to the group. Thank you for all the well wishes. I am doing better. Still on O2 but my breathing feels better. I'm getting my strength back slowly although I did fall once and couldn't get up. I had to crawl from the kitchen to the living room and heave myself up using the couch and coffee table. I got the results of my brain MRI yesterday and they were disappointing. I have multiple new mets. It looked like someone took white paint and scattered it on my image. The good news is my RO called them "tiny". I am going to be doing WBR starting as soon as they can get me in the schedule. So that's a little scary for me. I'm just tired. It's been a long month. I have my quarterly CT coming up on the 31st and this time I'm a little scared but I'm trying not to project. It may be just fine.
@mara51506 I'm so sorry to hear about the flu. I think both Covid and the Flu this year are delivering a wallop. The people I've talked to that have had it said it it was bad. I 'm sorry about the property managers and the struggles with DB and SIL. I hope things improve quickly.
@micmel I wish I could reach through the screen and hug you. As my parents get older and have started to have aging problems it's becoming more real to me that at some point I will lose them and every time the thought makes me cry. I'm so glad you are getting your mother's ashes soon. I hope that brings you some peace. The experience with the new MO is terrible. Hopefully a new MO is available soon. I do monthly bloodwork because I'm on Faslodex and quarterly scans. It has worked well for me but I know every treatment plan is different. Sometimes I feel like I live at the cancer center.
Thank you to all that offered support and thoughts and prayers. I appreciate it.
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emac, I'm so sorry about your MRI results.
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Emac-This all seems so unfair. You are a trooper for keeping a positive attitude after all you have been going through. I hope that you will be encouraged by the excellent results that Illimae and Mara have had with WBR. I'm sure they will chime in with their tips. I was impressed that you actually did get off the floor-maybe not where you wanted but you figured it out and got yourself up. You continue to be in my prayers. I admire your resilience.
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Emac, I’m sorry about the new little shits. While I haven’t had WBR yet, I do know that radiation works well for many, it has for me. The biggest problem with WBR from what I’ve read repeatedly is that recovery can be lengthy with prolonged nausea and fatigue. That being said, I have no doubt that you are up to the challenge.
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