My Husband, My Life, My Love, My Family, My Cancer
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I finally found you guys again! I use to be able to type breast and it would come up; but two weeks ago it said there was no such link. i tried to look in home topics and you weren’t there. i thought you had given the thread up.
happy birthday candy!!! isn’t it great the little moments we cherish now that would have been forgotten before diagnosis. we seem to take it all in now.
micmel it’s good to hear that you’re getting out more! my daughter turned 18 yesterday and for the last couple of months it’s like she’s struggling with the want of being an adult but also wanting to remain a child. her room is a mess also. if i can’t get it to change i’d hate to see what her house will look like.
i’m glad that i found y’all again. it’s like home.
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Holmes~ The mods seem to have moved us and I am starting to think a lot of people Can't find us anymore., Grannax I think mentioned the same problem. I'm glad you did find us though. Your seat was wondering where you had been. I hope you're doing well and I am always happy to see your Beautiful smile here. We missed you! Give us an update on how you are. My son is freaking 22! Like get a clue son.....
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Mel, the immodium did not stop another episode of incontinence this afternoon. Am afraid to eat anymore today. I am calling my MO office to tell them I will not continue the Perjeta. If that means nothing at all, I will have to risk it. Not willing to be incontinent or put up with the side effects of trying to stop the incontinence. My digestion was fine for the months I was off these drugs between June and September of this year. I would rather be around less time if my qol is going to suffer this way. I need to know I can eat meals and go out without diapers or having to take medication. There isn't even a trigger food. Has happened with different foods and this bout of incontinence is worse than my last infusion. I just can't deal with it, especially being on my own.
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Candy, Happy Birthday! I will pray you to your 50th birthday. There is something about making it to the half century mark. It’s like I arrived on a plateau and I can see life from a different perspective...kind of like, oh, ok...I have enough life experience that I can do this thing called life...then the 60’s hit and damn...just when I thought life was going to get easier...BC bowls me over...and now I have my 32 year old daughter and 2 year old granddaughter living back at home😬.
I love the “Happy and you know it”!! So true.
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Good day ladies. It's been a rough week changing insurance companies after DH retired. Need an immediate PCM (primary care manager) appointment to get a referral for my care and treatment--and next treatment date is 25 October. I think we are on the 10th option....have an appointment next week, then the company has 5 days to approve. And you will love this. A referral is required EVERY YEAR. Like Stage 4 goes away. I have had a blinding headache every day. Pure unrelieved stress. I would frankly rather have DH in a war zone--I was never this stressed out then. Add in finding places for everything now that we are finally home, and its probably no wonder I have a huge headache. Fortunately DH has dove in finding places for everything and reorganizing the house top to bottom. He also faithfully does the dishes. Hopefully all settles soon.
Great pictures ladies!
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Mara~I would absolutely call without a doubt. That is not ok. There has to be a substitute for that medicine that clearly doesn't work for you. Sometimes our bodies just are allergic to somethings. I was allergic to taxol. They chose abraxane. Be to the point and polite. I am so sorry you're alone I don't like that one bit. I am wrapping you in a huge hug! Love you sweet sister.
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Bella~ another beauty... hello there! I am hoping this finds you well. I am trying to do less sleeping and more living. I’m kinda liking the whole thing! thanks for all the ladies to who pushed me out of my regular comfort zone. It does help to see all you guys kicking ass. I just wish I could travel travel travel! Good to see you as always! 🌹!!!
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movingsoccermom~Insurance the word period gives me a headache. It is a war dealing with those people who always want to treat us as a file number It’s sometimes honestly a game. The doctor that fights to hardest gets the results. It sounds like you have a gem of a DH and for that I am thankful. I think everyone should be able to order one up, the exact way you’d want him, or need him to be. Wouldnt that be ideal. ? In my case, someone already knew exactly what I wanted and liked, and I found him. He saved me. That is why wish for anyone who hasn’t found their person. I’m putting out the orders!! You’ve been so busy, I don’t hear much resting going on. Take care of yourself for sure... dontforget that.
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Thank you Mel, I can feel the hug.
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Candy, Happy birthday to you!! 🎂🎈🌸 You’re right that we never know what the next birthday will bring. I was cruising along when I turned 59 last year, with no knowledge of my diagnosis coming 5 months later. This year, turning 60 I’m just hoping to keep on going and feeling pretty well. I hope your day was nice for you. Too bad we can’t all show up and celebrate with you. I would bring a layer cake, choc or vanilla, your choice. 💟
Mel, That car looks frightening. So glad your friend’s daughter is ok. Also glad to hear your energy level is up. The hockey game sounded fun. My parents arrived in Canada in the late 1950s (from Germany) and were NHL hockey fans immediately. They’re both gone now but they continued to watch for many years. Also, thanks for posting the pic! You look great 😊.
Mara, You look great in your pic too 😊. That’s good that you get out for short walks. I was pretty good at getting out in the summer but for some reason I’ve gotten lazy now. I go to my rec center for a water exercise class but various things have kept me from that recently too. We do what we can, right?
Tanya, nice that you’re home again. Enjoy your own bed, bathroom, and surroundings!
Moomala, that retreat sounded fantastic. I hope you feel glad you went. In your pocket for your scans this week. Which day?
Lynnewood, I was smiling thinking of your dad in all his Flyers gear for his wake. I’m sure it brought a smile to all of friends and family members too, who knew how much he loved his team.
DH and I are getting ready to leave for our river cruise next week. I’m hoping to have decent energy levels. Most days will be a walking tour for the morning then some time to explore the towns on our own. I’m expecting to have some down time in the afternoons. I think I’m going to need it. October is my no appointment month then in November I have two consults for possible liver sbrt (and possible entry into a trial).
Hello to everyone reading here!
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Holmes ~ ya know now that I think about it. If you couldn’t find us, then others obviously cannot as well. That bothers me a lot. We weren’t hurting anyone and they just made this decision, told me one thing and in less than an hour it was re categorized under stage four metastatic/open for all to contribute. Don’t know if that has anything to do with it. But I haven’t seen a lot of my regulars. I’ll say it again Thanks mods. For giving me a chance to work it out. Well done !
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Thank you ladies for the Birthday Wishes. It was a quiet, but good day. Handful of phone calls, couple of cards in the mail, Facebook Birthday Wishes. The day actually went very quickly. Didn't feel too bad either.
Mara- Yes you need to tell MO that quality of life is important. The diarrhea is not good.
Holmes- Glad you found us again. Welcome back.
Rosie- Chocolate cake please. Enjoy your river cruise.
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Rosie I have to comment on the walking tours without energy. Somehow I just plow along. I did see a lady once with a tiny portable seat and she sat when she needed to. I hope you can just plod.
Moomalas tests are tomorrow I think. I saw it on ibrance thread. I’m in her pocket with chocolate brownie cookes-extra large with creme filling.
I’ll be going to Moffit tomorrow to neurological onc for back pain consult and comparison read of new mri. After that off to monthly onc appt for shots and bloodwork.
Booboo are you alright haven’t seen you in a few?Rosie I’m in the 60’s club. Had a recurrence after stage 3 and 13 years to stage 4. Smack down in the face for my over achiever workaholic self.
Mel I was also allergic to taxol. Strange how there can be side affects and allergic reactions that can kill you.
Tanya
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Candy, just reading now so I hope I'm not too late to wish you a happy birthday. I wish you an awesome year to come!
Bella, my 32 year old son is back at home and he really shouldn't be. He has a great job and could easily have an apartment or even maybe invest in a condo, but I think he is afraid to leave me. Stupid cancer effects everyone in the family.
I have been bad about making dinner, mainly because I really don't have an appetite and being around food makes me queasy sometimes, but this morning I dumped some stuff in the crock pot and voila, dinner was cooked. So I'm proud of myself for accomplishing something today, and doing something for DH and DS.
Mara, I hope you have a better night tonight.
Hope everyone has a restful sleep
Hugs, Donna
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Donnabelle- You were not too late---thanks for the Birthday Wishes. Hug.
Tanya- In your pocket, too. And Moomala's.
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Thank you Donnabelle. Going to bed earlier tonight. Will call cancer clinic tomorrow to discuss things.
Tanya and Moomala, I will be in your pocket tomorrow.
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Happy birthday Candy! 🎉
I’m here, just quiet, not down but kinda bored I guess.
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Happy Birthday Candy! I look forward to celebrating 50 with you but for the moment cheers to 49!
Jumping in Tanya's pocket after my scans tomorrow. ChocolateChocolateMoreChocolate Tanya! Love it!
Hi Holmes!
Mara this side effect does not sound good at all. You need be able to know what to expect and sudden D does not fit that description. I hope they doc can fix that situation for you.
Rosie I am SOOOOO excited to follow along on your river cruise. I am hoping to do this too one day. Pictures when you can please!
Mel that car looks horrifying. I'm glad she is okay! My gosh!
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Micmel and Tanya, I too was allergic to Taxol. I went into anaphylaxis within minutes of starting it. Super scary. I have carried an epi pen with me at all times since then, 13 years ago. No issues with Taxotere and Abraxane though.
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Happy Birthday, Candy! Hope you enjoyed the day. Wishing you many happy returns.
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i’ve been doing really well except i think the build up of two years of treatment is starting to affect my joints. some days it is really hard to maneuver out of bed. i feel better once i move around a bit. i’m still running the preschool but the 52 mile commute each way is starting to become a little uncomfortable. my son just moved back in after 4 years of marriage and he has his two little girls every weekend and most nights. it’s only been three weeks but my husband and i are really missing our alone time. but on the other hand when the girls are here i don’t notice the aches and pains so much😃
tanya and moomala i’ll be riding in your pockets for your scans.
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Reporting for pocket duty!!! Moomala, and Sweet Tanya! Big pockets. Quite warm and comfortable. Yummy chocolate cookies and cake. Hugging you both From your pocket. Much love ~M~
Holmes~ I feel the exact way you do. I wake up and it takes me about ten minutes to where my feet dont hurt to walk l. It makes me feel ninety. Depressing and quite painful actually. I’m so glad you’re back!
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Late Happy Birthday, Candy. I'm not even trying to catch up on this thread, yet.
Candy, I ended up in the ER. Yep, HGB was 5.4. I literally could not walk by the time we got there. Now, I know what it feels like to be severely anemic. My DD took me and did a great job of keeping track of things and being my advocate. The staff was great and efficient. They gave me two units of blood during the night and I was home by noon on Monday.
My HGB was up to 8.6 by morning. But, I'm concerned about getting TX on Friday. All of my labs looked really bad. If she does chemo on Friday, I will just tank again. Maybe she will reduce the dose. On Sunday morning I wrote on my portal to my MO., she called me about an hour later and told me to go to the ER. She was right.💞
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Happy birthday Candy!!! Hi to all!!
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Thank you all for the Birthday Wishes. Yesterday, birthday, was quiet at home , but a good day.
Illimae- Hope you are ok.??? You said you are bored.??? Hope today goes better for ya.
Grannax- I posted on the liver met Thread in response to your post. Good grief, girl. Hgb 5.4. Next time, hopefully not a next time, you feel bad CALL YOUR MO. Glad it didn't go any lower--though 5.4 is scary. Not something to take lightly.
So today is errand day and tonight is Library Board Meeting. I am on the Board of Trustees for our local Library. Also need to find out where I can get flu shot. My MO and PCP didn't have as of last week. Need to get vaccinated. Don't want the flu !!!!
In the pockets of Moomala and Tanya.
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So after a good night of sleep, I gained some perspective on my SE and weighed out pros and cons. The pro is that I am currently NED both body and brain so treatment has worked. Stopping the perjeta opens me up to losing Herceptin which also worked before the brain met was found. I also read up on struggles of people on this site and what they go through and put up with and decided I was being wimpy. If all it takes to stay on perjeta is Tena underwear and immodium, the SE I have now is probably not that bad. Cancer SE would be much worse and make it so I could not do anything. The only con is the incontinence which can be controlled and contained without much bother and not requiring a full diaper.
One thing I am glad I developed in my cancer fight is the ability not to jump the gun too soon before thinking I had to stop treatment. Being able to weigh out consequences when not so upset is helpful. I was never able to do that until I was on my own this past January and realized nobody could change my mind about how my life goes but me. So going forward I have tried NOT to make snap decisions before getting out of being super upset. It is hard because I always have freaked out and it is ingrained in my personality but I need to expect more of myself. I will still mention this issue to my MO on my next visit but decided it is not currently an emergency.
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Mara I’m happy you’ve decided to continue treatment. I make emotional decisions too and then regroup and come to my senses. Tough choices we have.
JFL I had the anaphylaxis from the taxol too. Back in 2004. It was horrible landed me in the hospital for a week.
MRI results everything stable. I’m due for a PET scan this month so more scanxiety for the end of this month. Thanks for all in my pocket today. Neuro oncologist discussed back surgery with rods but I think I’ll get a second opinion and lots of other options before I get that big surgery. I think the healing downtime would be a very long time. Time is a very valuable commodity when you’re stage 4.
Waiting for my faslodex shots. Sometimes I feel like sneaking out the door like a kid.
Tanya
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Hello Ladies~ Naptime was uneventful. Which is good. I had to laugh at Tanya lol sometimes I feel like a kid and sneaking out the door. You're adorable woman!!!!!!!
mara~ NED is amazing. I guess we take the punches for that huh?the treatment that comes along with it0 -
That's great Tanya! I won't get my results until Thursday. I had CT and Nuclear bone scan today. Whoopee. It was an incredibly long day and with my anxiety and a bad night's sleep I am reallllly feeling tired this afternoon. Interesting to hear someone else get a recommendation for rods in the spine. My orhopdeic suggested it too but is waiting for me to be stable on medications for now before discussing it again. I'll definitely go for several opinions on that one. It sounds like a pretty big procedure.
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Tanya, so glad to hear you are stable. I can certainly understand getting another opinion on such a major surgery before undertaking it. I would be cautious myself.
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