Starting chemo February 2018
Comments
-
I was thinking about the issue of unsupportive or withdrawing family members or friends and as much as it hurts, objectively speaking I think it's pretty normal.
The whole 'denial ain't just a river in Egypt' thing is strong. We, as patients, are forced out of denial pretty darned quickly but those around us can retreat, even if they really shouldn't because they're supposed to be part of our support systems.
Ideally I think entire families should all be in counselling individually. Facing life threatening illnesses is just not easy to do. Sometimes my guess is we as the patients have it easier because it seems like WE can actually do concrete things and maintain some semblance of control. Others around us are I suspect struggling to sort out what they can do and how to maintain control, while dealing with an overwhelming fear and dread which is probably paralyzing for them.
btw, I am currently reading Pema Chodron's When Things Fall Apart: Heart Advice for Difficult Times. I recommend it highly. I've read other things by her but not this book. Here's the thing: I've had it on my table for almost 2 months. That's how long it took me to accept that I needed to read it, even though I knew I needed to read it. Ahhhh, denial.....0 -
AC round 3 was monday. Nausea better but steroids are kicking my butt. don't have much to say other than I'm glad I have you ladies. Nobody else gets how freaking miserable this can be. The culmination of all the small things. It's really starting to wear on me. my house is a disaster but now I really don't even care because I finally LOOK sick enough that nobody else cares either. My husband is usually a neat freak and I see him letting it all go as some weird kind of denial too. The house is running on emergency systems so to speak. My 10 yr old daughter bless her heart has started cleaning up the house on her own and I'm both extremely proud and extremely sad about that.
My 6yr old has been acting up at school too. He's excelling academically but he's always been kind of Dennis the Menace behaviorly and this is definitely not helping. The school finally asked me what they wanted me to do -(nicely, not in a rude way) and I told them please step in and mom him while he's there and acting up (time out and a talking to but if he's having a bad day throw in a hug too-I told them not to cut him any slack, but to round it out with acknowledging he's going through a tough time too). I trust them, they just needed permission to go above regular school protocol without fear of parental backlash. He's been doing better since then.
Sharon-neoadjuvant chemo is common in HER2+ or in others if the primary tumor was larger.
moth-you're right about denial. While I have a great support system, I feel like only 1 sister-in-law really understands the gravity of this. Everyone else is opting for rose colored glasses.
0 -
Moth glad you are improving hoping things begin to move along quicker for you. Add me to the neoadjuvant group and my tumor is shrinking.
It is amazing to me in many ways how so many of us have family members who are reacting in similar ways. Shows that we humans in many ways are truly connected where it matters the most. It did spur a brief conversation with my son and he admitted he is just plain flat out mad. He is some ways feels he has failed in a promise to his dad right before he passed to always take car of me and his little brother. Like I told him there is no knight in shiny armor that could have protected me from this illness. Now most of all I just need a shoulder to lean on if needed and he needs to take his little brother out every once in awhile so he can escape being with someone who is sick all the time right now. So they are going to see the "Black Panther" movie this weekend. Funny how we worry more about those around us and if they are doing OK we seem to do better.
0 -
I am so great full for all of you in the February group. I started chemo on January 23 so I feel closer to you all in this group. I have been reading your posts from your start. What made my chime in and post today is with the issue with our sons.I had been feeling bad because he was avoiding me. I was so glad you brought it up. I've only seen him 1 time since all this started and he was avoiding my calls. I really think this is his way of coping. For all of us hang in there
0 -
So well said Moth!! I don’t have kids but I know it has to be hard to go through this with kids of any age. Love to all of you!
0 -
Not too much to say today except that I am glad you are all here. Love and healing to all.
indahood
0 -
bone pain and no pain meds thanks doctors the Advil feels fantastic in my stomac
0 -
I'm scheduled for AC #2 for tomorrow at 3:30 pm. So it will be 3 weeks instead of 2 and I'll be at 75% for this infusion.
They're trying to get me approved for Neulasta instead of the Grastofil that I had the last round.
If I respond properly to Neulasta and have an ok time this round, we'd resume bi-weekly AC and possibly go back to a 100%.
Today is first day since Feb 23 with no medical appointments - no doctors or blood tests! I'll do my pre chemo blood work first thing tomorrow morning.0 -
moth -Good luck with the new medication. Enjoy your day off.
0 -
moth-good luck with your treatment tomorrow. Hopefully round 2 will much easier for you and you stay healthy. I hope you get the approval for Neulesta and it works for you. One shot is so much easier to deal with. Just don’t forget the Claritin
0 -
Thank you for the encouragement, Pink Ribbon Friends!
My married 30 & 33 year old married sons rarely stop by or call or text. I text them with brief updates every few days and they do respond briefly. Younger son DID visit during 1st CHEMO and that was really heartwarming! But haven't seen him since. :-)
I'm blessed to have retired hubby who will do anything for me but I can tell the strain affects him (he was an engineer/engineering manager Motorola for 40 years, so he is really into fix things!)I feel like I'm struggling up from the lowest function 8 days after 2nd chemo. Different side effects were worse and just feel so WEAK! Don't know how you moms with young children or women still working can manage!
Anyway, just glad to have this group as resource. And want to wish everyone well as you progress through!
Have a good evening!
0 -
Ugg mild nausea nothing tastes right tomorrow will be a week out for me from my second chemo. The only thing that tastes normal to me is multi-grain Cheerios in almond milk. I guess I shouldn't complain my side effects were better this time than the first round for sure but lots of fatigue and more nausea this time. Hope you're all surviving your side effects keep checking and girls
0 -
Deb- I’m 2 days ahead of ya and everything I try to drink tastes bad except milk. Even water. For the past 5 days I’ve been craving and binging on meat, something I usually have in moderation. I could not get enough. It was like throwing a steak to a lion. I woke up this morning unable to even look at meat without feeling queasy and all I crave is lettuce. Go figure. After trolling bettycrocker.com and buying fixings for meat dishes a few days ago, I’m stuck with that stuff and just sent my husband out to buy more lettuce and salad dressing. Chemo really messes with taste and appetite. I remember for round one by week 3 food cravings and strange tastes subsided and I could eat normally again, if only for a week. I sure hope that happens again
0 -
I had almost no side effects from Round 1 Chemo. Round 2 is Friday. I'm hoping for the best but really have no idea if SEs will worsen. Next Thursday I have to attend a wedding in Venice Beach. It is approximately a 3 1/2 - 4 hours drive. Plus I started losing hair a few days ago. Not one single person at this wedding knows I have cancer. I do not want to become the center of attention . Due to bad weather in the Northeast my wig has not arrived yet. Im through complaining. Just anxious about the wedding. I've had a very good three week. And I realize through reading your post several of you have really struggled with side effects. Hope all your SEs are minimal. Those of you with children, I admire you. No matter what is going on in your life, you are always a Mom.
0 -
My Side effects seem to be kicking in a bit early than the first round. However the nausea is not as horrific so far this time because I have kept right on taking the meds instead of stopping them like last round. It still seems that the nausea is tied in with stopping the steroids.
Funny the foods that still have some taste are so different than last time. Today it is cinnamon toast and milk. Last time it was almond milk that tasted good now it is awful. Who knows what it will be tomorrow. Early a big bowl of rice chex cereal with no sugar just milk tasted so good.
Deb and Moth hope you both continue to feel better this round. Indahood, rockcity, and CBOK as you go through round 3 hope the SEs lessen. I hope as they started a couple days earlier that I will gain a couple more good days at the end of this round. Seems like a fair trade to me although there is nothing fair about this illness.
0 -
hi ladies! So amazing the recent posts. I totally agree that men need to be able to fix things! If they can't, they feel helpless and somewhat worthless. I believe that boys and men have a special connection to their moms. And if they can't "fix" what's wrong with them, it basically rocks their emotional foundation. They tend to stay away as they don't know how to deal with the emotions they are feeling. Women on the other hand don't feel the urge to fix everything. We know that sometimes people just want a shoulder to lean on or a ear to listen to their problems. Whenever I tell my husband about an issue I'm having he immediately tries to resolve it. He doesn't turn around and just hug me. Sometimes that's all I'm looking for, a hug. I can resolve my problems, but I can't hug myself.
I've been feeling better these past couple days (day 10 & 11 post round 2) - almost no fatigue and my appetite has finally improved. I am now trying to fill myself with as much good healthy food I can to Provide me strength for my next chemo (Monday). I lost some weight with round #2 , so hopefully I'll put a little back on before round 3.
Momlovesher - welcome to the group!
Jlove1821 - good luck tomorrow! I hope the infusion goes well and that you have minimal SEs!
Aanoliver - I hope you are feeling better from your SEs!
Moth - so glad they adjusted your treatment and you will get to continue tomorrow! I hope you get the Neulesta. Its one shot and very easy too. I’ll be praying it all goes well tomorrow for you!
All those going through SEs now - I hope you improve quickly! Wishing you good days ahead!
Hugs
0 -
Thanks pbello- once Sunday hit, my anxiety is through rough, plus hair loss this week and I was a hot mess. I'm hoping 2nd round is the same if not better! 💜 I added melatonin to my ativan so hopefully I sleep tonight !
Thinking of you all throug this while I read and catch up on your posts! You guys are great support! Is anyone from MA?
0 -
all I wanted when I had a bad taste in my mouth was baked potato and bagels! And broth!
0 -
Thank you everyone for all your good wishes. I hope I can sleep tonight. The waiting around tomorrow till the chemo in the afternoon will be tedious but I've got netflix cued up LOL. I've got Claritin on board already - allergy season is starting here. The trees are doing their sexy thing
I hope it works - it really didn't when I was taking the grastofil last time. I didn't realize how much pain I had until about 3 days after the last injection when suddenly all the pain was gone.
Today I did a little Zumba workout in the living room with some of my favourite songs from my playlists and I went for a walk in the evening so I'm hoping that will help me relax tonight.
That's too bad that some of you are having food issues. I was fortunate last round -- things stopped tasting 'right' but nothing tasted bad so I kept eating what I normally eat. Only thing was water started being gross so I switched to a carbonated water - unflavoured but has a bit of orange aroma added. I'm also drinking one big cup of organic green tea / day because I read that's supposed to be good for cancer.
hugs everyone!0 -
My heart has been racing pretty bad. Anyone else feeling that? It was really scary yesterday but is better today.
0 -
cbok, I've read that chemo can raise your resting heart rate. Wouldn't hurt to call your oncology nurse and just ask what they think.
Are you experiencing palpitations or shortness of breath? Because for those you definitely have to call asap.0 -
Talked to doc's office. They said as long as my O2 sat is ok, I'm not short of breath/having palpitations don't worry unless it gets up around 120 at rest or have a fever !! That's nuts!! They said if I ever want to stop by and have my vitals taken I can but that chemo does this and it's killing both cancer cells and regular cells and the body is working really hard right now. I'm skipping anything resembling cardio for a while though. Sheesh!
0 -
CBOk - wow, has your heart slowed down? Hope you’re feeling better. I was not aware that only after 120 at rest it’s a problem. That is crazy! I’ll start taking heart rate measurements to track that at home.
Jlove1821 & moth - hope it all went well today for you ladies!
0 -
It's almost back to normal and I'm finally starting to feel that I'm over this round's SEs. My normal resting rate is mid-upper sixties and it was getting up to 95 just sitting at a desk. I'm sure what is acceptable is highly variable by individual. I was definitely feeling it is why I noticed. I could feel my teeth throbbing.
0 -
Hi everyone, my 2nd infusion went fine - no fainting this time! She did it very slowly, put cold wet compresses on my neck and reclined me before starting the iv push. I'm home and eating dinner quickly before my tastebuds go all weird
0 -
moth-so glad everything went well. Take it easy.
0 -
I have been mia busy with kids, work etc. 2nd round is coming Monday. I felt crappy for about 10 days like hungover 24/7, only 3 days of diarrhea though. My hair was falling out everywhere starting Monday, so I had it buzzed yesterday. Feeling pretty darn normal right now, just fingertips are cracking no matter what I put on them. Husband yes you look like a tough m-fer, the baby cried until I put a hat on, and Miss Kinder has not seen it yet because...hat 24/7.
Good luck all, hoping to have a nice low key family weekend and get some food prepped for next week.
0 -
Hi Everyone,
OFMICEANDMEN nice do. Welcome to the baldy group. You do look quite natural and beautiful with it.
TO ALL THE MOMS... I admire you all. Not sure how I would cope with young ones at home
TO ALL THE PEOPLE WITH TASTE BUD ISSUES: I have had a hard time drinking enough since water tastes bad and I don't like sweet drinks like juice. I bought myself a soda stream machine to make Soda water which I usually love but it tastes gross to me now. My solution has been to drink lots of Coconut water. It tastes really good to me and is good for you and not too high in calories. Full of electrolytes as well. For some reason it seems to cut through that slimy coating SE that covers the mouth.
CBOK... glad your heart rate is down again. I get it about the house. Me too, I just have to choose one very small chore a day and be ok with that.
Me....Had a bit of a rough week emotionally and I think that affected me physically. Anyone else live alone? Normally I love my homecave, and I'm not a super needy person but this fatigue means I have to reach out and ask for help with the smallest things and I feel frustrated. Especially when people say they will be there and don't show up. I have a friend who is all talk and she stood me up 2x on one day then sent me tons of emoji hugs, arghh. In my normal world, I know this and accept that this friend can be unreliable, but now that I'm in this weakened state, it really bugs me. It feels so ungrateful to complain about the way people are helping me get my needs met. But I did tell her how I felt.
I'm day 12 after round 2 and My SE's are probably less than last round but the fatigue is much worse. going to see some comedy tonight with a friend. Hoping it picks me up a bit.
Indahood
0 -
hi ladies I felt the need to come here to Wine a bit the Big D is back and really getting me again I just don't know if I can do this it feels like I have the stomach flu 24/7 and I'm just so sick of being sick anyway I'll feel better now that I cried to you guys about it
0 -
ofmiceandmen - you look gorgeous!
(I'm so impatient for mine to finally all fall out. I'm like 95% bald with this sprinkling of chin length hair hanging on for dear life. It was hilarious for a while but now it's starting to just look really scary lol !)
indahood - I'm sorry your friends are flaking out on you. That's tough.
Sometimes people who are a bit more removed emotionally can be better helpers, kwim?. I'm pretty introverted and don't like to socialize much but because I have dogs & am always walking in the neighbourhood with them, I do know lots of my neighbours just to chat with. And some of them have turned out to be really reliable helpers. One of them drove me to the ER in the middle of a snow storm when I got febrile neutropenia. So I wonder if perhaps you might try enlarging your circle to acquaintances. Or post on craigslist for a paid helper? College students etc wanting make a quick 10-20$ would be willing to run errands or do a quick chore for you. And because they're not close friends, there's no pressure to have long conversations or try to soothe feelings etc. It might be worth the $ to not deal with hassle and emotional fallout of unreliable friends and family.
Debsmisto - oh no, I'm sorry your gut is feeling so poorly. Keep complaining to your physicians. Have they exhausted all the medications to prevent it? I think there's some sort of escalating protocol of meds for this. My info sheet also says we should consult by phone with the dietitian and they'd develop a new meal plan. Also, have they done a stool analysis? It's in our guidelines that if it persists you need to do a stool culture to rule out parasites, c.difficile etc.
One other idea - have you tried cutting all dairy out? Lactose intolerance is pretty common and it gets worse when you have diarrhea as you lose the layer of the intestinal brush border that secretes the enzyme to digest lactose. I hope you feel better soon!hugs for everyone
0
