Starting chemo August 2014
Comments
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wind girl...it lols like the trial is only at Ucsf, and a small sample size. Eileen...I'm praying that there are no tumor cells in the bone marrow. I asked the doc if it was like having pre-mets and he said kinda, although it isn't a guarantee it comes back...it's better not to have tumor cells in the marrow. You can still recur, though, even if there are no cells in the marrow.
Beatmom...this is for a trial of a drug that helps build bone and is useful for bone mets too. The drug is approved for building bone, but hasn't been used before in non metastatic patients who only show tumor cells in their bone marrow. They want to see if it reduces the quantity of tumor cells in bone marrow after monthly administration. If you qualify for the trial, you get a bone marrow biopsy again at 6 and 12 months! Yippee
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Gatomal,yes I would do the trail. But praying that you are not eligible! Darn it that the trail is only available at UCSF as I would sign-up for it in a heartbeat. It is interesting that my MO never brings up trails -- glad uours does! Sounds like an awesome doc.
Windgirl, when is your awesome vacation?
Bippy, I hope you celebrated and lived it up this weekend.
Cassie, how was your daughters adventure? Did you take over the treehouse? lol
4 weeks into tamoxifen. Seem to be doing ok. I did start to feel a little dizzy on Friday but today seems much better. Anyone else get lightheaded with Tamo. Like Bippy the main SE for me is this darn INSOMNIA -- 😴😴😴😴. Fatigue is improving but I want a good nights sleep.........
I am back to work on Monday. I have to say I have enjoyed these few weeks off. I told my husband I can get use to being his kept woman. LOL. His response you would drive me and you crazy. He is right.
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hi Ladyb, I leave on the 20th of May for about a week. really excited about it just got news that another one of my best friends in life will join, so we will be five girls
I have a rather eventful work schedule until then, two of my projects I manage will be inspected internally, so it will be perfect timing for relaxation. I got news that I may be sent to Chile for work the week of June 8th and crossing fingers for that! Never been so it should be interesting Hope everyone is doing well today, take care
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Hi ladies.
Just checking in. I'm super tired these days and not sleeping well. Hot flashes, Tamoxifen SEs? Anyway, that's not so great. But, tonight we're going to hear Michael Pollan speak, and I'm looking forward to that! I think he's being joined by a couple of cancer doctors, too. Should be interesting - I really liked his books.0 -
Cassiecat=Insomnia is such a problem. I am not on tamoxifen so it is not from that. Night sweats several times a night. I get up in the am tired because I was up all night.
Windgirl have fun. I leave next Wed for my trip
Ladyb=Hope work goes ok. Glad you are feeling better enough to go back to work. Your husband is funny
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hi ladies,
I sure miss talking to you every day. It's a good thing and a bad thing right? We're all moving on and don't need as much support which is good.
Eileen I'm sorry you're not sleeping at all and hot flashes suck. I've been lucky in that regard so far but I don't expect it to hold out. I only sleep when I medicate with the trazodone now.
Hi Cassie! Sorry you're having a bit of trouble too. It's good that you're getting out and doing things.
Well, I got my first hair cut last night. She also put some pretty color in. It is so freaking short, but having the experience was just amazing ....I almost cried.
Off job hunting again, I have a couple of appointments next week. One of them is at the hospital! Just a part time administrative position and not in the main hospital building. I figure I could do that till vacation and then come back and do something else. We'll see.
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good luck job hunting! Isn't it great to get your hair cut? An amazing feeling. We are having a rough day today. Being three is already a challenge for the girls, lots of defiance and crying. My night help is over in two days, so I'll be doing the early morning feelings, I have surgery again in about two weeks, and am worried about how much helping I'll be able to do. Just felt them saw for the first time my axillary node direction scar? WTF? I thought she only went in from the Breast incision. How could I have missed that all these weeks? That's what happens when you don't have a full mirror in the bathroom? Feeling really sclubby, so got new jeans. I have a much different body than I did before. Not great for the self esteem. Also trying to lose weight before I start on AIs in three months so another added stressor. Maybe too much at once? Got new running shoes though. No one knows what to get me for Mother's Day. How about about a nap
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Gatomal= If I was near San Fran I would come over and let you take a long nap and then go out to dinner with your hubby.Only the best for you. Good luck on your next surgery
Bippy= I am getting my hair trimmed on Tuesday. Can't wait. Will make me feel human again. Hope everyone has a great weekend
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Gatomal,
And wishing I was there so we could pound some Moscow Mule's together. Maybe someday!
I spent most of the day crying and curled in the fetal position in bed. My hair looks great, but all of a sudden I feel like I was hit by a hammer. Delayed reaction?
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yes, drinks with Eileen, then some co-wailing with Bippy, then drinks again. I'm sure it's a delayed reaction. I have these great days, like "yay" I can get my carpal tunnel taken care of.then holy moly, I'm not going to be able to do anything with the hand for weeks? Every step back to "normal" shows us how much we used to take for granted, and how much we've lost. It is unfair, and terrifying if you think about it. I think I'm going to find some Cancer therapist, since I can't really burden my mom. She saw me crying by the kitchen sink, and said "are you worried about next week?" And I said I'm worried about survival. Too much truth on a Friday night. Then I had half a shot of vodka, with a nilla wafer and milk chaser. Who says I don't live the high life? Lol
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Gatomal I wish there was something I could do or say to make you feel better. This ride has been exceptionally rough on you with the pregnancy and second surgery
i truly admire your strength. On the diet, try to take it easy you will have plenty of time for that later. Lots of hugs0 -
Hi Ladies,
Life has been a little crazy here, but getting better each day. I had my MIL here for a week to keep DH company while I returned back to work. I think he will be fine to stay home next week by himself now. His cardiologist said he is weeks ahead of most men his age after surgery. still needs to take care while he heals
Hoping everyone is doing better and wishing you good days ahead.
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Oh Catie, that is just crazy! Like you need anything else to have to think about. Glad DH is recovering well.
Gatomal {{hugs}} wish we all there to help you out a little bit. You've been through so much, and two set of twins to boot? Holy moly. I wish you lived closer. I need a walking buddy. It's hard motivating myself to go out alone.
Bippy, I've been in a royal funk all week. What's that about? Bad sleep, delayed reactions, meds...??? I'm sorry yesterday was such a down day for you. I hope today is better. Glad you like your hair.
I'm not at the point yet to need (or want) a trim or color. Good luck with your job hunting!windgirl, your upcoming travels sound great! I'm happy for you to have that to look forward to.
Angie, DD had a GREAT backpacking trip! It was super challenging physically. They were off-trail for much of it and following a creek. But she came home happy and accomplished. She also realized that she has a crush on one of the seniors boys at school, who's in her theater class. Uh oh... lol! She's too busy for a boyfriend, thankfully! Ha ha.
I still sleep OK if I take Ativan, but I don't have many left and no refills left. I'll see if my doctor will refill it again for me. We need to sleep, right?! I have about 5 weeks left in this school year, and then an in-service week, and then it's summer break! We take DD out to her summer program the third week of June, and then go back out 5 weeks later to pick her up and watch the final performances. In between there, I hope to get back to volunteering at the animal shelter and really getting some good exercising done.
Have a good weekend, everyone.
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Gatomal- Big hugs from me.Catie57= OMG!!!!!! So glad your DH is doing well.
Cassiecat= So nice your DD have a great time. Her summer should be terrific. Crush on a guy. Oh how I remember those.
Bippy= I was not myself last week. I think sometimes I am rather off. Don't feel like engaging with anyone.
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Hi ladies... I can so relate to those of you going through a rough time emotionally. I have to make myself leave the house some days. I don't work so it would be easy to stay inside. My body is so wimpy right now too! I worked in the garden for a few hours and that was two days ago and my legs and feet still hurt! Part of it is from being inactive for so long and part of it is damage done by chemo. I'm also not really happy with my reconstruction. They do not look right. Lastly, I really do not have any desire to have sex-ever. I take Prozac for depression and that doesn't help but the Arimiasin makes it so much worse. I would be OK with the no sex thing but my husband is not. He is very supportive but he needs his wife back.
I sound terrible. I AM grateful to be alive and done w most of the treatment. I think it's just now that I feel safe to feel all these emotions. Hopefully it will get better for all of us soon. Hugs to everyone. Amy
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the emotional part of all this is the toughest. I don't speak much about it, but breaking up with my boyfriend who I was together with for 5 years was the hardest part for me. we had problems before too so this is nothing new and while I made the decision, he made it inevitable, and it was an especially tough one to make as I made embryos with this guy prior to starting chemo (I don't have kids and wanted to make sure I can have them in the future when they let me). I have an amazing family and very close friends who even though may be thousands of miles away show me their love and support daily. but even that sometimes is not enough. That's why I work as hard as I do during this period and fill my time off of work with plans for better days. My past 3 weeks have been occupied with finding used windsurf equipment for example (my ex kept all my stuff, boo!!) and I can say that I've made a career out of it
No matter what I do I don't have inner peace with all this yet. The moments I stop to think are no fun, so I try to avoid it as much as I can. Looking at Facebook sometimes amazes me, all my friends living normal lives seems so far away from my reality. I am just hoping that this is a detour in the road. I try to pass these days for the future, without really living today, I feel like this is unfortunately the best I can do now. We all are trying to cope with it in our own way, it is impossible not to get affected. I am not sure if this will make you feel better, but you ladies with loving husbands and/or kids are so blessed, at least from my point of view Hoping we come to a point where we share happier stories very soon 0 -
on a better note, something fantastic happened today. my back (right under my bra) was itching and I was able to scratch it no problems! I had not been able to get my hand back there up to now and I realized it after I did it oh the little things in life0 -
Hi to all my Ladybugs! I think we all have these terrible emotional days. Here's what would help me....I just want to know...when will it be so bad that it is time to go? I have an advantage over you sweet younger girls...my kids are 32 and 26. They'll miss me like I miss my mom, but they are old enough and doing ok in their own lives. The not knowing kills me. My muscles are killing me..having weird muscle spasms under my diaphragm (lung Mets causing ?) am I going through these side effects for not much gain. And I'll be onH&P forever...so is this all I have to look forward to? I am grateful to have a ggreat hubby and 3 wonderful friends
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Windgirl, beatmom. We are all on different parts of this journey, aren't we? Some are on a harder, longer path, some of us just stroll through a scary forest for a while, then emerge back into the sunshine once again. No one has any answers for when or how, for any of us. Those who don't even have cancer may be getting dressed this morning for the last time. The length of our time here is mysterious to us, maybe we are lucky to have time to tell eveyone we love just that, to dispense with the unnecessary, the less meaningful, and try to focus on love and joy. Maybe this miserable disease can, for some of us, be a crash course in imparting maximum wisdom to us before we leave.
I'd rather audit the class, however, than take it for real. Ha.
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Windgirl, it is the most wonderful thing that you have your embryos frozen. Family and children are the only thing that matter in life. You are very smart. by the time we wanted children my parts were already nonworking. I was going to be Miss legal assistant of the USA and career meant everything to me. It absolutely consumed me. So I waited way too long and then it was too late. Now, I'm too old and too damaged to even adopt. It's the biggest regret of my life. Someday, you will have little baby windgirls and windboys!
Beat mom, I can't pretend understand where you're at, but I'm thinking of you and sending hugs your way.
Gatomal i'm always thinking of you in the precious little ones.
Amy, I understand a little bit where you're coming from. It is hard sometimes to get out of your own head. I'm struggling now to get out of the house too. Last few days I've been too tired and just haven't cared enough to try. Intimacy is a challenge for me and my husband as well. Not feeling very sexy these days.
Eileen, I hope you're feeling more chipper soon. Lack of sleep will really take it down. Your humor always gets me laughing and makes me smile.
Catie! Glad DH is on the mend.
Cassie, awww DD and the crush. Remember those times?!
I was able to go on one of the boards and comfort a gal who just started chemo, which made me feel very good and useful. She was just starting her first one, and I helped her a little bit. Maybe I need to more things like that.
Angie, kellogg, shirley, nurseshark, everyone, hugs and blessings.
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windgirl, I'm So sorry that your relationship broke up. That's hard enough to deal with, and especially under the circumstances. You must have felt adrift, or maybe still do. I don't know how old you are, and don't know about your embryo status w your ex, it's probably too personal to get into, but just know that there are many different paths to parenthood. Sometimes not the way we'd hoped, but still paths. If it is something you want in your life you will figure out a way to get there. And cancer, especially, can be a real clarifier of relationships. So, mourn what has been lost, and there is a lot right now, but know it's not over till it's over. You never know what can be around the corner. Hugs
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Hey Ladies, checking-in. I have been MIA for a few days. Tamoxifen headaches hit pretty hard but now are better. Also started back to work today after short time off due to RADs impact on my skin. Healing going well and managing lymphedema. Will respond to post later today.
I am always thinking of my peeps, my girls, my friends.
Big Virtual Hug to all,
-Angie
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Hi all, sorry I've been away for sooooo loooong! I've read the last few pages of posts, but was 15 pages behind, so didn't take the time to fill in the 10 in the middle...
Just wanted to check in. I've been on an emotional roller coaster the past few weeks. Hubby & I had our 2nd wedding anniversary 4/20, but 2 days before that, had to say goodbye to my beloved, beautiful sweet kitty Mooch, the one with diabetes that went into remission to help me get better. He had a relapse and some other complications. Worst day ever. I'm still crying about him almost every day. I miss him so much. Went home to MO for a week before that, spent some time working in the office. Met some new coworkers I hadn't met before, got into trouble for visiting too much, several people didn't recognize me with my new granny-fro.
Right before I left for MO, I had my annual mammogram (a couple months late). Results were waiting in the mail when I got back. Additional imaging needed. Went for another mammo on the good side (the one that didn't try to kill me last year). There is a cluster of calcifications, so I have to get a biopsy on Wednesday. RO says if it's anything, we can just do another lumpy and rads, but that's what they told me last time... I'm scared, don't want to do this again, don't want my other boob cut into...
Anyway, just a quick update, time for my walk. I've been very diligent, walking 5 times a week, at least 3 miles, sometimes 5-6 miles. I have a fitbit, too. It is a hard task-master! I'll write more later.
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ladyB - Sorry you've had headaches, hope you are feeling better.
Strongenough - keeping you in my thoughts during this time. Heartbreaking about your beloved kitty.
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strongenough good to hear from you. I am so sorry about your kitty!
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strongenough=Sorry about your beloved kitty. Hope your biopsy comes back negative. ENOUGH!!!!!!Praying for you.
Windgirl=Have fun on your trip. Sorry abut your breakup. When relationships end for me I was always devastated. Turns out it was always for the best.
Ladyb Sorry about your headaches.
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Hi All, caught up on post. I can't believe that before today I have not posted since 4/28. Not good. No wonder I missed you guys.
Windgirl, and all, I agree with each of you that at this point in the journey the emotional part is the toughest for me. I love my family but at times I not sure they understand that I have not yet processed all of this emotionally and still have to step back and take deep breath.
Windgirl, Sorry about your breakup and ditto Gatomal's comments on the embryos. Have fun and relax on your trip. Yes the little things in life – so awesome. I was happy when I realized that my shoulder didn't hurt anymore.
Cassie, how was the Michael Pollan event? Any good insights? So glad you DD had so much fun and her summer sounds like it is going to be great!
Bippy, good luck on the job hunting and the appointments this week. The last week I have definitely felt like I have been hit by a truck. Mine I believe is a delayed reaction coupled with Tamoxifen.
Gatomal, Huge virtual hug to you. Agree with windgirl this has been exceptionally rough for you with pregnancy, second surgery and young kids. I too truly admire you and your quiet strength. Always thinking of you and the little ones.
Amy, I totally agree. I was having such a hard time getting out of the house the last 3 weeks. I wish conventional treatment would have more "after" care for those that have gone through treatment. It seems like such a key need and one that is sorely lacking in this whole journey. Conventional medicine does such a good job at fighting the disease but not so much on the follow-up care from an emotional and mental standpoint. But I could not have given this type of feedback at the onset of my dx nor during treatment. It is now that I realize how important it is. The sharing is so vitual that is why I believe this board is so important.
Catie, so glad your DH is feeling better and recovery is going well. Hope you are able to relax and get rest.
Strongenough, my thoughts and prayers are with you and praying that your biopsy comes back negative. Sorry about your beloved kitty. So glad to hear from you and you go girl with the exercise!
Beatmon, as always so glad to hear from you! But not glad hear about your SEs
. Always thinking about you and praying for improvement of the SEs and can't wait for the next good report that H&P is doing it's job.Kellogg, JeniferE, NurseShark, and Shirley --big hug to each of you. Hope all is going well with work, family and life in general!
Tabbygirl, Randomchance, Oceanbreeze, DonnaNJ, SandylovesLucy, Wizard50, Terri1975,Thinkpink4ever, Nomatterwhat and others -- Miss you guys but I know you are moving on and praying all is going well with each of you. If you check in just drop by and say hello.
Hugs Always,
-Angie
*Please forgive any grammar or typo's to tired to correct -- big smile.
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BTW, I did finally get to an acupuncturist and it was great. I have to say when I initially left the office my thoughts were -- not sure how this helped. However I can tell you now (4 days post appointment it helped): 1) my shoulder pain (virtually gone now) -- I have been going to a PT since beginning of March, 2) my dizziness and headaches from Tamoxifen reduced, 3) pain from RADs nearly subsided, and 4) insomnia -- nearly gone I haven't slept this good in months without a sleeping aid. I plan to go back in 2 weeks. Here in California it is a bit expense for the private acupuncturist but I may try what they call the community acupuncturist (which means they share space). I was a skeptic until my SEs started to diminish.
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LadyB, thanks for the insights on acupuncture. I know a lady through the scout troop who does acupuncture and she does income-based pricing, so might give her a call & try it for my lingering side effects- joint pain & stiffness is the worst one for me. I'm also still having foggy days, forgetfulness, etc, but not sure acupuncture can help with that! I don't have insomnia, per se, but feel like I never get a good night's sleep, waking up several times & generally restless sleep, and still having hot flashes, of course, probably from the exemestane. I've been trying not to focus on the discomforts too much and just get on with what I need to do, work, exercise, etc. That's one reason I've been away from the boards so long, just wanting to try & ignore this crap as much as possible...
On a positive note, I forgot to mention before, hubby finally got a JOB! He was out of work for 9 months, started the new job about 3 weeks ago. It's seasonal work as a park ranger, so it pays next to nothing, but it's fun for him and he can keep taking classes, working fewer hours during school and full time hours in the summer. Between the small paycheck, GI Bill for school, and his tiny VA disability benefit, I think we will be ok.
Bippy, I think I am going to get my hair cut & colored, too. I've been on the fence, kinda feel like I worked hard for this grey hair, lol, but it just doesn't look like me in the mirror...
Windgirl, so sorry about your break-up, that sucks. Did you keep the embryos? There may be a chance you could get back together, you never know. My husband & I met in 1983 when we were 17, dated long distance for a year or so, fizzled out, but kept in touch, sometimes 10 years between letters. We each married & divorced somebody else, but then reconnected in 2009. Similar thing happened to a cousin of mine, he's very happily married (3rd time for him) to a woman he first dated in high school. But anyway, even if you don't get back together, you might still want/need those babies... might be complicated, but would probably be worth it. And what a story!
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strongenough, so nice to see you!!! Yes, get your hairs done, you will feel brand new. I am so much happier. Thinkin of you and wishing for good news. We are here for ya.
Well ladies, we may have a newbie stopping in to see us here. Her screen name is MYE. She is on the TCHP cocktail, first treatment just a few days gone feeling very rough. I told her to call her Onco, and get whatever she can for the nausea because she's really suffering. I also told her she could come here and join us anytime to get encouragement and be embraced. How nice it is, to feel like I can actually help.
Lady B! It's so nice to hear from you again too and I'm glad you're back to work. Radiation can be tough on some of us but it does get better. I'm using the coconut oil on my chest and right side under the arm and it is a miracle.
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