My Husband, My Life, My Love, My Family, My Cancer
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Mel, I am so sorry you have so much anguish on your plate right now. You have had so many losses that the sadness can just feel endless. I can certainly empathize with you. I too have had to make the decision to give my pet family a dignified passing over the rainbow bridge after watching various cats get older or diseased. It is the hardest but most loving thing we can do but it breaks our heart. My last cat Miss Kitty was like that for me, I cried so hard. Cried as hard for her as I did when my mom was gone in January. I myself did a lot of crying for my mom, having to lose my younger brother, my condo that I had to sell. So many changes in a short period of time. The only thing that started to lift me up was trying to find small joys in my own house. I would watch funny videos on youtube, like the scottish granny reading the wonky donkey. Watching childhood cartoons and old TV shows that I watched as a kid. Just to try and get back to life. It has taken months for me to be able to say I am in a better place. My mother's birthday is Oct 14 and instead of being sad about that, I plan to watch her birthday video from last year and just wish her happy birthday. I also enjoy my two cats as well. I have them watching relaxing cat musing on youtube. Tigger is enjoying the show. He spent 20 minutes watching the video. These small things help make me happy in my new life on my own. I still have some sadness creep up as a lump in my throat but I have to consciously move it aside and enjoy being with myself, going out or doing whatever I want.
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Moomala, just want to say how sorry I am you have had to switch treatments as well. My best wishes are coming your way.
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Thanks everyone, I'm doing better today. Not awesome but better. I found myself in the grocery store today just picking up a few things we needed and passing by people who looked like they were having a great day and I felt angry. I felt like the only sick person in the universe and that LIFE is going on all around me. Happy people living their lives and going about their day and not realizing that I'm standing in line in front of them with stage 4 cancer. Sometimes I have the urge to tell a stranger in the grocery store that I have stage 4 cancer. I'm not looking for a reaction, or for sympathy really - if I dig inside I think I just feel intense loneliness in the disease and telling a stranger could mean that one other person in the store knows I'm sick and I won't feel like I'm alone. When DH got home from work today, we went over the results of the CT and bone scan in detail so that we fully understood. It's so hard to understand. CT scan everything is stable. Nuclear bone scan shows uptake in a number of places indicating progression. I am not sure I understand how this can be. What's the difference? A question for my doctor I guess, but we pondered that on the porch today. I told DH that sometimes I have a picture in my head of me stuck in the mud and all of my friends and loved ones smiling and living their lives all around me in my mud/grief. In the image that comes up I'm below everyone and I can't reach them. I have a very good friend who lost her 31 year old son to a heart condition a few years ago. I used to run into her at the same grocery store and now I know just how she was probably feeling then. Stuck in the mud while life was going on around her grief.
Anyway I don't want to be a downer but I feel that way today. DH and I looked back and realized that in seven months I've gottena a stage 4 diagnosis, two progressions and a treatment change. Pardon my language but no freaking wonder my soul feels so sh*tty and discouraged. I feel your hugs everyone and I'm really grateful.0 -
moomala you hit the nail on the head with your words. I recently just spoke almost that exact same sentence about wanting to tell strangers on the street about MBC. I really love your very beautiful understanding of the internal struggle and it having to do less so with anger and more so with the loneliness that grief brings on.
It is amazing how I go in such strong waves of the ups and downs. One day I see the beauty in the mundane and the next I feel depressed and completely isolated.
Micmel I also totally get the issue of not wanting to burden our loved ones with the woes of the side effects, psychological toll, and outlook on life that this diagnosis can bring up. I have friends to say that I can share with them my lows, but it is as if I don’t want them to have to go through it with me. I hate to see the look of worry on my dads face if I mention something is hurting. I downplay it as much as possible. If it becomes unbearable then I will complain to my doctors.
This shizzle ain’t easy!!!!!
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Moomala tell the stranger in the store syndrome is a feeling I can identify with. I do find myself wanting to tell people explain what this cancer is. Mainly bc Breast Cancer with all pink makes everyone think that you’re the thriver survivor pink parade. Im sending you a big understanding hug. These results leave holes in our souls. This progression, scanxiety, changing treatments type of fear and emotion brings to mind a pink T-shirt shredded, ripped and tortured.
Mel I hope you’re feeling better today.
Philly this shizzle sure ain’t easy.
Tanya
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Moomala- I have some of the same feelings-- telling a stranger in the store. Since this is Breast Cancer Awareness Month, I have been posting things on my FB page about Stage 4 MBC. Not for the attention (well maybe some), but mainly to teach my FB Friends that it is not all Pink Ribbons and "Survivors". That even if I "look good" I am still fighting the cancer and it is serious and real.
Edited to say- Moomala--- could the uptake on the bone scan be something other than cancer??? My bone scan lit up ALL OVER (I mean ALL OVER) but my doc said it was the inflammation of the RA, not cancer. The CT states my bone mets "stable". Do you really have progression???????
Mara- I love your pic of your cat. Precious.
Mel- I could feel your despair in your posts. I am soooo sorry my friend.
Well today is our County's American Cancer Society's Relay for Life. It has always been in June, but the planners moved it to October this year. I have not been since my cancer diagnosis. But I was always active in the Relay for YEARS before that. Never knowing I would be a cancer patient some day. I just always thought it was a fun, community event. I remember the years when the people with booths would have to set up like 10am even though the event didn't start until 6pm. Never understood why. But one year it stormed that day and we were trying to keep our stuff from blowing away or getting wet. Then the event would start at 6pm and go until 7am the next day. And I would stay for all of it.
Tonight I am planning on going with a friend. But only to wander around the booths and then go home. I am not going to walk the "Survivors Lap" or stay to hear the names called of the ones that have lost their fight with cancer. Too much, too hard now. I thought about not going. I think it is going to be hard in some ways, but I want to go in other ways.
This shizzle sure ain't easy.
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Candy, good for you for going to an event at all. I don't even do that. I pretend all this talk of thriving and surviving does not happen. For myself, thriving with this disease puts too much pressure on me to give an unrealistic idea of what I go through. I am not negative about it but I'm pragmatic in my attitude. It does not bother me to say I am terminal. It bothers the other person. I don't spend much time on future plans but don't give much thought to my own disease. Just don't tell me to thrive when you have not walked a mile in my shoes.
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Mara- I think I want to go to the event because I was always a part of it before- before my life turned upside down. It is a community event. Tonight a chili cookoff.
I miss my old life. I miss the energy I had. I miss the fun.
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nothing is easy. Just went to sweep my floor. It’s like I ran ten miles to my back. Cancer is absolutely insidious.
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Mel, I totally agree with you. Hate when doing something small is hard when I used to be able to do other things. Getting tired out from bits of laundry, vacuming such a tiny apartment etc. Had it when I stair at my computer too long on my phone sometimes and wind up not be able to see from almost like a burned in effect. Think staring at really bright light or staring at sun too long. At least now, I was able to talk myself of panicking about it. Hard for me to do. Went to bed and put sleep mast on eyes to don't see it anymore. Don't thing it is anything too serious that would need surveilance. Suppose it could even be some sort of migraine. Since I don't know, have to just walk off stress and keep moving. Still is so hard and I agree the cancer is insidious and so hard function sometimes.
Mel I just want to keep sending my thoughts your way so you can feel my hugs and wanting to take some of your pain for everything that is going on for you right now, same as you do for so many others. Cancer and sometimes life sucks sometimes.
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Candy678 this is ALWAYS my question with bone scans and CT scans. I have Paget's Disease of Bone which is benign. This lights me up all over the skeleton as well. We have a really good radiologist who looks at my scan and can see the differences between the two conditions. I'm concerned about the confusion all the time. It's super frustrating. But there are a couple of clues he looks for. What I don't understand is why something shows up on one scan and not another. A bone scan shows "uptake" which is the tracer collecting in a areas where there is bone activity. Could this be showing uptake before lesion? Is a bone scan an earlier indication of activity that a CT scn which would only show a lesion? It's really confusing. I wish I knew a radiologist. Anyway I am trying not to stress out about changing to Aromasin and Afinitor. There are a couple of people on the forum here who seem to be tolerating it quite well. And if I don't - well then I will be stopping it and saying "NEXT..." to my MO. My big bugaboo is nausea. I will manage the mouth sores and the fatigue somehow but I don't get too stressed. nausea, on the other hand, is something that I have a lot of anxiety about. I was terrified about Ibrance that way too but I did not get that side effect. I was on 125 mg Ibrance and I had some slight fatigue and a little constipation. I'm trying to so hard to be more of a 'take it as it comes' person. If I get nausea on A/A and it's not manageable, I will stop talking it period. Until then I'm trying not to think about it.
Mel and Mara my brain still wants to teach 40 students a week but right now I'm at 25 and that is plenty for real. I have been fortunate to have someone cleaning once a month at my house for the past few months but that is going to end soon as my class size reduces because $$. For me, exercise and teaching piano keep my energy levels up. Cleaning the house or yard work are pretty tough without specific tools to make it easier for me. I usually end up in some sort of pain. This week cancer and life suck. I'm on the upswing after two days of crying. I'm off Ibrance and letrozole now and just trying to let my body relax (riiiiight) I'm still mourning honestly about Ibrance and letrozole. I had no trouble with those two drugs and I'm soooo anxious about starting something new. But let's get some perspective Moomala! Having no trouble with two drugs that were NOT working! I need to be on something that is working AND I/L and I may meet again someday.
I can say this...for the weakest most anxious and crybaby of all my seven siblings I am kicking some major ass at having a stage 4 diagnosis and two progressions in seven months. I surprise myself sometimes.
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Moomala~I think you’re pretty damn amazing Id be on the floor with my dogs around me wondering what the hell has happened to their mother. You’re strong and beautiful and you’re so loved. Your students are incredibly lucky to have you to teach them Id be honored!
candy~ It sucks royally to sleep for three hours in the afternoon and can’t wait for bedtime again pathetic. I am on my month 36 of Ibrance. Going on 37 Since the way I’m taking it has changed. It’s a challenge to say the least! Wish I could just stay on. Arimidex. I’m realizing those hormonals are tough on our joints, terribly It sometimes hurts to walk at first until I get going. The few extra pounds doesn’t help either. It’s a vicious circle !
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hi Tanya!!!! I. Love you sweet sister. I’m trying to get into a better head space. Any room in yours ? ♥️
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Philly ~ Hi sweetheart, we missed you! It’s always good to see your beautiful face here. I hope You enjoyed your lobster rolls! Those pics. Amazing!
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Moomala my Dr gave me something for nausea and I’m sure it’s available to you as well. On the ibrance thread they talk about it all the time. I’ll take a pic and send it.
Mel I’m another thread I read that marianelizabeth was hospitalized and having a lot of pain and she wore that she was taking a break from all these threads. I think either Divine or 50’s girl posted it. Maybe 1 week ago.
Has anyone heard from BOoboo?
My friend that I used to run marathons with and my gym buddy picked me up for my day 1 back to the gym. I rode the bike for 15 min and did a very level 0 workout. It was nice to go back. Hardest part was deciding to accept the invitation.
Tanya
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thanks Tanya - yes that is Zofran. I have a prescription for compazine here but I will keep this one in mind too just in case.
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I second the recommendation for ondansetron. Helps almost immediately and if I don't want to get knocked out, I am known to cut it in half and find it just as effective without making too drowsy along the way.
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Reglan works also. Very well. I hope she'll be ok. It's hard to keep up sometimes. I don't blame her one bit.
Hope you're doing good today. Great job on the gym. I am soo envious. Makes me want to try also. Hugs friends . Its a lovely evening outside. Windows are open and the breeze is fine. A huge full moon out tonight. Looks really cool. The clouds make it look so eerie. Halloween right around the corner. Thanksgiving is late this year. The 28th. Christmas will arrive even faster. Ugh! More work and money..
Hugs! ~M~
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Just want to say Happy Thanksgiving to my fellow Canadians this weekend.
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Mara~How interesting today in Canada is thanksgiving! Eat up for all of us Ours is late this year. Nov 28. Way too close to Christmas For my liking. Have a great day !
Hope everyone is doing good today. Sunday. DH leaves. Which sucks Then I go back into my alone time again. It is when I usually watch what I want to watch. We finished Ozark. 3seasons incredible show period. If you haven’t seen it watch it, it’s really really a great show. We loved it! Hugs to all!
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Mel did you read what I wrote about marianelizabeth above?
Have you heard from Booboo
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Mel, thank you. Looking forward to it. Will be heavily medicated and wearing diapers. Unfortunately, still have fecal incontinence that strikes with no rhyme or reason. The day started really rough. Did a half hour walk on treadmill, ate a bowl of cereal. Then all of a sudden there it was. Thankfully a small amount but still. No security for me. Loaded up on immodium and ondansetron as was nauseated. Sat on my couch crying trying to decide if I could go to my brother's. Decided I needed to push myself, walked another half an hour, my mood seemed to be lifted, drugs were kicking in. Got hungry again so ate a couple of cheese sticks and did another half an hour after. Feeling physically better now from when I started. I took digestive enzymes, probiotic, immodium, ondansetron and advil as some of those drugs give me a headache. Think I will bring extra immodium and digestive enzyme to his house. I feel physcially better now than I did, not good at coping with the side effects but if these walks curtain my crying and anxiety I will need to do that more. Look on the walk as a pill instead of a cure.
I hate the SE I have but I don't want to give up my treatment as I am sure it would be worse for cancer to also sprout up from the neck down. Hopefully my brain holds up for a little while. The SE are difficult for me being on my own but trying to find solutions. Looked up incontinence underwear you can wash again and again. Will see if it works. The only problem with Tena is it does not breathe. I am hungry for supper so will enjoy it all and load up on drugs there too so I can enjoy it all.
I still wish I did not so quickly resort to tears as I have tools to manage this. Can't seem to get my head to just deal with it. Instead I just start blubbering and have no one to talk to about it. Unwilling to call in SIL and brother on these matters. Guess walking it off is the answer for me and just have to put up with what so many of you put up with and more. Will be mentioning this with my onc, still wish I could just have herceptin. Will see if she will help because this cycle was worse than last cycle for this SE.
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Tanya~Hospitalized for how long? I know she was supposed to be receiving some pre Hospice to alleviate Pain. That she was only posting in one place because it was to hard for her. Has anything changed? I can't imagine how exhausted she is. Please pass along my love! Are you ok ? Have not heard from BOO BOO! I hope she’s ok also. Seems like a lot have gone rogue.
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Mara~ I cry every single day and I am alone a lot as well. Mainly during the weekdays. But weekends are never long enough to have people around me. Even if they are around me, the way I feel, is the way I feel No one else can come close to understanding except you ladies. Having MBC can become extremely lonely and isolating. It’s sad that my life has turned out this way.
I cling to the small things anymore. I sometimes wonder how long can one person handle living like this?
havent seen Mae either!0 -
Mel, I am to the point that I want to tell the cancer clinic to keep the perjeta as I fear the SE will only get worse and worse. Not being able to rely on your body to control your own movements is frightening and the idea that it will only get worse is terrible. I have stuffed so many meds today to counteract the incontinence and my body still wants to go a bit worries me. Having said that, I refuse to allow my Thanksgiving supper be ruined. I am not sick, and this is not anything in particular I am eating. I will bring all my pills, wear my Tena and have a good time. Gotta stop walking as I have done 4 30 minutes walk. Think that is a bit ridiculous to try and regulate my mood. Will have to call cancer clinic Tuesday and let them know this is a terrible side effects. Needs to be address and soon. My digestion was only ruined by the two drugs together, not Herceptin. My digestion was fine when I was taken off the drugs back in June for exhaustion. Tempted to tell them to take their drugs and put them where the sun don't shine.
Only other thing I am working on for today is to keep my mouth shut. I will not hijack Thanksgiving dinner with my older DB and SIL and family with tales of my yucky side effect. It's bloody annoying and distressing for me. Going to plant a smile and eat my food. At least when medicated, still feel really hungry. Will be nice to see them anyway.
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Mara~I honestly hope You have a great time and enjoy your meal. I’m pretty hungry now. I understand how frustrating it is when your mind says you want to do one thing and your body is like whoa I’m going to do this ! It sucks !
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Mel, I am actually pretty hungry. This particular SE does not dampen my appetite one bit. I am glad for that. I am bringing a boatload of pills to take before supper to avoid anything. I am also wearing Tena underwear. Those two things will help. Getting washable incontinence underwear as well if I decide to stay on this drug. Trying to make it as livable as possible. I always want to see my brothers family. Have not seen my niece in a couple of months. She works at city hall and is quite busy. Will be nice to see her. I saw my nephews more recently. Little nervous of Sampson. He is a very large Great Pyrenees who liked to jump. He is a very nice dog, just really big. He may be excited to see me as I have not been for dinner at their place for a while due to working nephews. My mom and sampson in better times.
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Mara~ I love the sweet picture. What a beautiful dog and mother. Warms my heart. My Mom lives far away. Sometimes that’s hard. She doesn’t handle my illness well at all. She floats in that river called denial. Have a blast you deserve it.
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My DH and DSS were bow hunting and came across two male turkeys fighting over a female. They stopped and watched this happen The turkeys were so caught up in the fighting they didn't even know they were being filmed and photographed. They were in awe! Sat quietly and left them alone0
