Starting Chemo October 2018
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Still in the hospital. They mentioned possibly giving me steroids to see if it helps with enzymes levels. I think they might let go Wednesday. Who knows. The oncologists believe it is definitely chemo related. The gi doctors are testing me for every autoimmune they can think of. I have officially been publicly bald sunce Friday night. Everyone says I really look great
Antigone, I do not have a port.
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Antigone I have a port, and I love it on infusion days, but it's itritating the rest of the time. Can't wait to get it out!
Notgivingup hopefully you're out by Wednesday!! Why do they think you have an autoimmune disease? Would that make liver enzymes skyrocket?
Saw my MO today for my mid cycle check and my blood levels continue to be good. I had to bring my 4 year old daughter with me for the first time since I couldn't get an appointment while she was at school this week, and she was a rockstar. Watched them do a blood draw, was super polite and quiet in the waiting room, and talked confidently with the nurses. Best news so far: my MO can't feel my tumor anymore!! My cancer that started at 7cm is no longer palpable
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Fritz, I guess they (gi doctors) thought it could possibly be an answer to the elevated liver enzyme levels. My oncologists think it was my chemo drugs.
Great news on you tumor!
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hey everyone. Back home now. Had stress test first thing this morning. Yeah, not my favorite. Layed inside the PET/CT machine while they injected me with some stuff that makes your heart race, head pound and you feel like you’re going to pee yourself while about to throw up. How’s that for “stress”? Ugh. Well, passed that test. Then an EKG and Echo. Both normal. So after all of this plus the CT yesterday, they don’t know why I have shortness of breath and back/chest pain. The nurse discharged me with a thought that maybe it’s acid reflux or just holiday stress. My husband looked at me because he knew I was going to struggle with keeping my mouth shut. But I did. Tis the season. Going for 3rd Taxol Wednesday. This stuff definitely has a mind of its own.
Fritz - amazing news on your tumor. Or what WAS your tumor. So wonderful.
Not giving up - being away from home is so rough. Hoping things level out and that you’re back at home very very soon.
Casey - where have you been? Thinking of ya and hoping all is well.
Take care of yourselves everyone. Hydrate and rest. :-)
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hello all sitting here in tears. Trouble sleeping, dry heaves this morning, I’m scared for thursday. I just want all this to be over with. My eyebrows and eyelashes fell out a couple days ago, I officially have no hair anywhere. It’s been alittle hard looking in the mirror. I asked my hubby this morning why life has turned upside down and why it’s so hard. My hubby told me because I’m a tough cookie and I can do it. He said this is the cure unpleasant as it may be and we will have the rest of our lives together afterwards. I love him. I’m sorry for the absolute bullshit we all have to go through.
Patrice, thanks for the skinny on mr. taxol, keep being my Guinea pig and give me updates as you travel the taxol train.
Fritz, so very happy for you, sounds like you may have complete response! That’s awesome!
Sadlynew sorry for all the tests u have had to endure but glad everything is ok and you got the all clear. Here’s hoping to smooth sailing from here.
Not giving up, brave lady in red, hope things are improving and normalizing so you get to go home. Crossing fingers and toes for you.
Hope those in the chair, soon or recovering are doing well. PS I heard vitamin c is really good for keep white counts up. I’ve got OJ and vitamin c drops so I’m armed and ready. For red counts I heard red meat is good so gonna enjoy a steak or burger couple times a week or more. Take care ladies before u know it chemo will be over.
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radagast rabbit I’ve been feeling the same way, many more SEs after this last infusion, I’m always naseaous, no appetite, no energy, and I have acne for the first time since I was a teenager, not to mention no hair. Like your hubby mine is being great but it’s hard to imagine feeling good again. We will! hugs from N
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rabbit. Yes. Times 100. I’m not sure if it’s the chemo triggering a sadness or something else. I hate the sad thoughts and try to stop them. AC was tough but Taxol is such a wild card. I go for #3 tomorrow. Most get by with little to no SEs. Mine hit me out of the blue. It’s great your hubs is so supportive. Get all the rest you need. We are in the midst of it. We can do this. Keeping you in my thoughts.
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sadlynew, glad I’m not alone but sad I’m not alone at the same time. Nobody should have to go through this crap. I’ll be in the chair thursday for taxol #1. Sometimes I worry to post how I feel because I don’t want to scare lurkers who are about to start, I know I lurked a lot before this thread started. But at the same time I wonder if it will help those on the emotional roller coaster which is just as wild as the physical. I cannot wait till we can congratulate each other as we all finish and then won’t have to live so much in a doctors office or hospital. We have been through a lot together all of us. We started strong let’s finish strong.
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Well I am finally being released later today. Liver enzymes are still high. They are going to try steroids for 5 to 7 days. Hopefully that will help. There isn't a lot of information for my MO to go on as to how to treat this. I'm just happy to be going home today.
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Hey ladies!! So so sorry I havent posted! I've been over here in Casey land on the river of denial. Lol Just told my hubby I need to post b4 I freak everyone out and they think I died! Lol (maybe not funny 🤔) Anyway, as usual anxiety kicking my ass! I kept reading posts and seeing symptoms and then would quickly read sig lines to see if I had same diagnosis! Then breathe sigh of relief if different and would stress I would get them if diagnosis was the same! Then...feel like a jerk for thinking "phew, at least I dont have that disgnosis". I'm nuts! So, off for a bit.. but I'm back. Not sure where I left off? Met with other surgeon. Told her I just didn't think I could do 4th AC. As we all know, I'm not doing taxol. She, of course, encouraged me to do it. (4th ac...and taxol) I actually did a bunch of research and found a study that was done without and with both then with ac/surgery/then taxol. SAME results! (If anyone is interested, i can send it to ya) So, that made me feel better. And, honestly, briefly reading through some of ya'lls post about it...OMG you guys are my fn HEROES! So, moving on. Was really struggling with 4th AC. MO called me and talked me into it...for that moment. Day arrived...I called them and said I was sick. Yup, you read that right! I called in sick to chemo! WHO DOES THAT??? Then, wake up the next a.m. OMG....I think my lymphnode is swollen again. So.. I leave msg for MO. He calls. Asks how I'm feeling. Ya know, cuz I was sick. I said it was just a stomach bug, but I think I'm ok now. He says "you know, you have anti nausea meds". Um ya...that cause headaches and dizziness! Nope! His response "and get rid of nausea!" I laughed. In my head I'm like "you so know I'm full of shit". Lol Then, I said.. so about this lymphnode??? Oh, and side note, breast surgeon said she could kind of feel it at exam. He said, well it may be growing a little or it could be nothing. (I had 2 involved at diagnosis). I informed him i had ultrasound a few days but no call about results from breast surgeon. He looked them up. 1 mass shows about the same, and one has shrunk about 70%. He thinks most is probably scar tissue though because, clinically, cant feel them at all. But, best news....shows no residual blah blah blah in lymphnodes! Yaaaaaaa! Gone in lymphnodes. Of course nothing for sure til surgery. Now hes definitely pushing for me to finish Ac! Ugh...ok, fine! I show up monday, my nurse isnt there. Omg! A very nice nurse with white hair walks up and offers his services. In my head..well, hes older. Maybe hes been doing this a long time and is great! Or, maybe this is his 5th career! Nope, I left! So...after 5 weeks, I show up today. Almost left 2x...but I DID IT! I do feel a bit like a fraud saying I'm "done" with chemo ESPECIALLY after skimming through these posts
! Are you ladies that were in the hospital ok? April???? Notgivingup? Rad, how are you??? Fritz....awesome news!! I will reread all these posts tomorrow to catch up properly! Did you guys miss me??? 😂😂😂😂In other news...my 7 year old son has asked for Lebron james for Christmas. The actual person. Sorry kiddo, I know I'm awesome and all, but that's a no go!!
Hugs to all!!!
Casey
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Way to push through Casey!!! I do the same exact thing as you when looking at other people’s dx signatures. On Monday I went to the breast cancer support group again, and this time there was a woman there who was recently diagnosed stage IV after 3 years originally stage I. I was basically in panic mode the next 2 days. If stage I recurs, I basically am doomed, right? I keep trying to remind myself that everyone’s journey is different and there are so many factors that play into prognosis besides original staging. I’m throwing the book at this thing and being ultra aggressive. All that’s left is to enjoy life to its fullest and try not to dwell on the what if’s. Easier said than done, but I’m trying
Maybe Santa will figure out how to get Lebron down the chimney. If he does, I have a few celebrity crushes I’d like to ask Santa for, too!! 😜
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fritz...right!?!? I have a list as well.
Your right, everyone has a different journey.Dont try and focus on the negative ones. (Says me who would be doing the EXACT same thing and never returning to group! Lol) I will say this. My aunt was diagnosed at 42 with bc. Even same side as me! I always had this feeling I would get it...weird. Long story short, she had immediate surgery, chemo and pills for 7 years. She is 72, smokes like a chimney and has had NO reacurrance! Shes my hero and my go to! When I was first diagnosed her exact words were "well, your gonna lose a tit, but you'll be fine!" (Sorry for the language haha). And I just hold onto that. Not to mention, stuff has progressed sooooo much in 30 years! She is actually gonna fly out to me in colorado from VA and stay a couple weeks for my surgery
Oh...And, dont forget, we pretty much have same dx...so reaccurance is not an option!! Hugs!!0 -
Your aunt sounds like a hoot!! That’s awesome she hasn’t recurred!! We will be fine
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So today I had more bloodwork(you wouldthink I wouldn't have any left at this point) and had an appointment with my MO. Well, my enzymes went down a little yesterday, but came back up today. So she took me off one steroid and put me on another.
Apparently I am a guinea pig for this. They have never had this issue with the liver enzymes doing this. Not even from chemo. I have always said I am one in a million.
So she tells me while on this new steroid I am NOT allowed to have any salt/sugar. No cookies, cakes, chips...I asked if she was trying to kill me. I said eliminating some of my favorite foods during chemo was hard, what the hell is left for me to eat! It going to be Christmas and I can't eat what everyone else will be having. Ugh! Ice cubes it is!
Now I know it is temporary, but I love food! This is going to be hard. I go back Monday for more bloodwork. She wants me to call 2 hours later to get my results. Prayers please so I don't kill someone because of starvation.
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hello all! Casey it’s so good to hear from you and yes you were missed!! Great news about the shrinkage and you go girl for finishing AC! That’s a HuGE accomplishment!! I’ve missed your posts and I have to say you got yourself a GREAT MO so patient with u and works with u getting through this! So proud of u for getting your butt in the chair and doing that last AC.
Not giving up, lady in red hang in there! I keep having to remind myself this is all temporary so alas I remind u. My goodness what a rollercoaster ur on, but your doing it! Keep rockin those red heels and give those liver enzymes hell!
So today was my first taxol! Armed with frozen water bottles for feet and hands I went in there expecting the worst and walked out saying “hey, this feels different from AC already.” I felt normal walking out not like had been drug through the mud immediately afterwards like I did with the AC. Slow day, 1 hr premeds and about 2.5 to 3 of the taxol. Tolerated it fine as they slowly moved the speed up. Everyone was great and hubby was super attentive. And I felt normal whole time and afterwards.
Now the exciting part. We decided to get our oil changed and inspected before my chemo since we needed to get it done and we had a few hrs. Immediately after the guy pulls out the truck the brake line snaps and is leaking on the ground, we have no brakes and 20 mins til my chemo appt. had to call a taxi ended up being half hr late. Taxi back to find out we need all new brake lines and it won’t be done til tomorrow. Have a break down over the cost that’s coming and cost this mess has cost in taxi cabs. On the Taxi ride back home I’m sobbing in the back of the cab, hubby is trying to comfort me. Hubby took charge during it all because I couldn’t even think having not slept night before because of the steroids and I was so scared to start the new chemo and for all this to happen in the midst of it. Ugh. He really was great. I looked over at him and thought boy am I lucky. Luckily we have another car but it’s been acting up lately too. Wonderful. All I kept thinking to myself is “merry Christmas!” End rant.
Hope everyone is doing well! Will report how the taxol journey goes as I progress! Boarding the taxol train, 1 pit stop done 11 more to go
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Notgivingup - I'm so sorry you're going through all this! And I can totally relate to the guinea pig thing, because I get that, too! They've already had to adjust a lot of my treatment because "we've never had anyone have like THAT reaction before...". I hope your enzymes lower quickly so you can get back to eating our favorite foods - I could do without sugar for a bit - but no salt? *whimpers*
Fritz - that so exciting that your tumor isn't palpable anymore! Congratulations!
Ccaxt - your aunt sounds amazing, and definitely someone I'd like to spend some time with, especially on some of these bad emotional days that creep in.
Radagast (be still my heart, another tolkein fan?) - how are the iced bottles working for you? I've got two rounds left, and while I have the booties (which are a godsend), i've just been keeping my hands in bowls of icewater, and it's none too pleasant.
Re: my port - I *hated* having it installed (turns out I'm allergic to fentanyl AND betadine), and I still hate anyone touching it (it weirds me out!), but I'm grateful for the one and done stick process when it comes time for infusions. I absolutely refuse to let anyone else touch it, though.
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Ladies, I hope you all have a wonderful holiday and will be able to enjoy time with loved ones this season.
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I hope everyone is doing well. I have been a mess for the last 5 days. 60 mg of prednisone will apparently do that. I have been very strict with my diet and taking my medication. Had bloodwork done this morning and still no change in liver enzyme levels. I had a melt down, still am. I want to get off this merry go round. Sorry for venting on Christmas Eve.
I truly hope everyone enjoys their time with loved ones.
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Well Merry Christmas to me. My MO has had me admitted again. My liver enzymes have not dropped. I am truly upset about this. I know I am where I need to be.
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Nogivingup I am so so sorry you’re dealing with all of this, especially at Christmas. Huge hugs to you.
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@NotgivingUp - I'm so sorry you're having to deal with all this, and especially right now.
I hope they figure out something to help you soon, and that you're released quickly. I'm going in today to have my enzymes tested again, and I'm nervous. I had my yearly physical a couple of weeks ago, and apparently my liver being so out of whack is really screwing with my cholesterol levels, as well. I'm grateful that I only have two Taxol infusions left, though with as much as it's messing with my liver...
I hope everyone else had a happy Christmas, and I wish all of you a fantastic new year!
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Today I had to have a liver biopsy. Still in the hospital. I am hoping to go home later today. I really didn't want to do the biopsy, it scared me, but I knew it was necessary. I'm still a little groggy, but I did it. Now to wait for the results.
I hope everyone is doing well. Let's keep fighting my beautiful warriors!
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Notgivingup liver biopsies are intense. Hopefully it will give them answers and that it’s nothing serious.
Antigone I hope your enzymes are improving! Interesting that it’s causing your cholesterol to rise. The body is a whacky thing.
I had cycle #5 yesterday and *knock on wood* have been feeling oddly good. Other than feeling tired, I don’t feel nauseous like I did every previous round. It almost worries me that the chemo isn’t working as well because I don’t feel like garbage! Lol. I’m insane. Oh, and I think chemopause finally hit me. Hot flashes galore. I better get used to it since I’ll be having a hysterectomy after my BMX in February.
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hello everyone!
Not giving up - thinking of you during this time. I know it can’t be easy but it will be nice I’m sure to get some answers. Hopefully the biopsy helps with that. Please keep us posted :-)
Fritz - I know exactly what you mean. I finished Taxol #4 today. Hot flashes galore!!!!
With the exception of my chest pain scare last week, SEs have been ok. I’ve had a barking cough (post nasal drip) for the last week. I believe the chest pain and shortness of breath was due to congestion of some sort in my chest. It didn’t show up on the myriad of tests they ran. But it’s gotten better. Back pain is better too. Odd. Saw a weird red bump on the inside of my arm (inside of elbow area). Of course, I freak out. Because everything makes us freak out nowadays. MOs office didn’t seem concerned. I’m going to watch it. My numbers look good I believe . WBC is 3.0. I just really want to finish. Going to reconstruction in April where they can also remove my port. Then I want to do radiation. Then I want these ovaries out!
My eyebrows and lashes are very thin but enough to work with. What is the status of everyone else’s? Losing my hair was tough but these are tougher.
Hoping everyone had a nice week. So glad to be done with AC!
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hello all checking in after the holidays! Just finished taxol #2 yesterday. So far so good. Side effects first round were day 3 and 4 with nausea on day 3 and joint and muscle pain in the legs day 4. Both were mild and went away as quickly as they came. Have 1 more taxol to go before I can stop the oral steroids ( thank goodness I hate those things!) I have found taxol very mild compared to AC, fatigue so far is nowhere near where it was with AC and I feel normal most days after taxol too which is very good for my moral, I’m still early on the taxol train but thankful so far it’s been uneventful.
Hubby has been a hoot going to my infusions with me, monitoring everything going on, scanning me all the time for side effects, helping me sort myself out with all the tubing when it’s bathroom break time, helping me ice my feet. The water bottles work great. I wear thin socks and hubby lines up water bottle which I’ve frozen night before under my foot, then puts a thick stretchy sock over it to hold it in place. Works great so far!
I’m not sure if chemopause is starting but when I was on zoladex for AC I had night sweats and mild hot flashes, right now I feel like I could be getting hot flashes because I keep throwing my covers off at night and I’m a covers type person.
Not giving up, lady in red, so so sorry what you have been going through during the holidays but I really hope this biopsy gives you some answers and the doctors some clarity on what to do. You have really been through a lot and I hope some relief is headed your way.
Antigone, I hope your liver enzymes start behaving too, seems like you and not giving up are in the same boat. Congrats on having just 2 more taxol left! Can’t wait to get to that point!
Sadlynew, I hear ya on the constantly monitoring side effects. The joint/muscle pain freaked me out a bit because it’s a side effect I’m not familiar with in chemoland and I didn’t have it with AC. I lost my eyebrows and eyelashes before first taxol, all of them. Losing them was both a shock and hard because along with the bald head i just felt more like a cancer patient. Today I looked in the mirror and they are growing back, both of them, slow and steady. Still no head hair yet, I’m most looking forward for that starting to show up!
Fritz, very happy for you that your feeling well this time around! You only have 1 more to go right??
Patrice and Casey hope your both doing well and that u post soon with an update. Taurus if your still around I hope your doing well miss your posts. Go for taxol #3 next week on Thursday, hope se and all else stays the same, hope everyone had a great holiday. By this time next year I hope we all can say cancer free and NED ( no evidence of disease)!!
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Not Giving Up- I hope that you were able to go home and you get answers soon from your biopsy- waiting is so hard
Fritz- great news on your tumor and your daughter sounds amazing I’m glad that you are feeling good and that continues for you
Rabbit and everyone else I hope things continue to go well
I just finished my 12th Taxol today. I am very happy to be starting the new year without it. My husband and kids came for the last part of my infusion. They wanted to be with me when I officially ended the Taxol and since they are off for winter break it was doable They have been so wonderful. I know it has been hard on them. They have had to deal with a lot in the last 5 years. Losing both my parents to cancer, their other grandfather to complications of Alzheimer’s. Grandmother years ago to ALS. My husband having Leukemia, and me having 2 types of cancers and going through Chemo again but they are strong and so am I. I will be going in next Friday for my first eco since my base and for the Preloading dose of the Herceptin. I'm still a little confused on that part since I have been getting the Herceptin along with the Taxol but I trust my care team and was a little sleepy when they were talking to me about it today. And then will be getting the Herceptin every 3 weeks from that point on. They will be doing extra bloodwork next week to determine what hormone therapy I will be starting. I have my exchange surgery scheduled for winter break. Still deciding on the nipple portion but I have time for that since that will be months after the exchange. I also don’t know what to do with my port. I had it taken out immediately after my other treatment was finished. I just had that done st the doctors office and t was really easy but I guess I have a lot of time for that as well
I used mitts on my feet (I just used the ones that the cancer center had) and ice bags on my hands during the Taxol portion each week and I really haven't had signs of neutrapathy yet with the exception of one week so hopefully that stays the case. I am hoping my sinuses and nosebleeds improve now since I have finished the Taxol. This week definently has been my worse so hoping I will be going in an upswing. I also had a constant cough but it as gotten better in the last 3 weeks. Looking forward to the next phase but also getting anxious for it
Take care all you brave amazing kadies
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Notgivingup - again, I'm so sorry about what you're going through. Biopsies are never fun, and on something like your liver, even worse. I really hope they give you some answers soon. My cancer center's ENTIRE computer network was down on Thursday and Friday, so I won't get my liver enzyme test result until next week. I'm hoping they're going down, because they went again and gave me my third infusion today without seeing the results, and now i'm really nervous about toxicity.
Sadleynew2018 - I'm glad your cough is better! I'm in the same boat as you about freaking out about every new strange thing my body does. I'm sure the nurse line is tired of hearing from me by now! My WBC is the same, but they went forward with Mr. T anyway yesterday, so hopefully I can stay out of the hospital this time. *fingers crossed* My eyebrows on the right are *really* thinning, as well, and the eyelashes on the inner left are gone, and they're getting sparse all over on the right. I actually just ordered a set of the Kristie lashes from Thrive Causemetics tonight.
RadagastRabbit - your symptom calendar seems to go pretty similar to mind. My exhaustion hits about day 2, worsens on 3&4 w/ *slight* nausea, and then pains start on day 4 and go through day 6. I compare in to having the flu without the flu. But after that, I really do feel normal-ish, like you said. So, yes, MUCH better than A/C. My partner has gone to every appointment and infusion with me, as well. So getting my water and juice, bringing me food, and changing the booties and ice water for my hands. I'd be lost without him. He also has been taken EXCELLENT notes, and argues with the nurses when they're about to make a BIG mistake (like injecting something I'm allergic to, or a much higher dose than I'm supposed to get) when I'm too exhausted to be a self-advocate anymore. As for chemopause, I've had night sweats for years, so it's hard for me to tell if what I'm experiencing now is because of the chemo, or just a continuation of those previous night sweats. I'm not really having hot flashes during the day, though *knocks on ALL the wood*
SisterStrong - So happy for you that you've finished Taxol! 🎉 I used the socks on my feet, as well (worked SUPER well - I'll be donating them after because they were so expensive) and bowls of ice for my hands. I had some neuropathy the first week (my nails HURT) and last week I had a period of about 5 minutes of pins and needles tingling in my hands about day 8 or so after the infusion. But nothing else. So *fingers crossed* that I don't get much more with this infusion, or the one I have left.
I met with my oncologist on Thursday, and she clued me in to the fact that she's told my surgeon not to remove my port during my tumor removal surgery in February. Because she wants to look at the pathology report to see if I'll need MORE chemo prior to radiation. *cries* So here's to hoping the pathology report matches up the MRI that's showing a dead tumor so I can get this port out sooner rather than later.
Question for all you wonderful ladies - I currently have a Mirena IUD. I had it inserted in April of 2016 after a SEVERAL abusive relationship that include reproductive abuse, so one could say that I'm incredibly attached to it. My oncologist has mentioned several times that she wants to have it removed, but other clinical research I've read, and other doctors I've spoken to, have told me that it only really needs to be removed if my cancer is hormone-receptive. I have TNBC. Has anyone else heard anything else about Mirena and TNBC, or have any suggestions on how I can speak to my oncologist about this?
Stay strong, everyone. And best wishes for a fantastic 2019!
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Antigone have you considered the Paraguard IUD? It’s the copper one without hormones. It might be a good compromise between you and your onc. I had/have one that will need to be surgically removed during my hysterectomy. 2 years ago my gyne told me it must have come out on its own when I went to have it removed after my DH had his vasectomy and she couldn’t find it. Well surprise surprise, they found it on my PET scan. It perforated my uterus and is now hanging out around my colon. Fun stuff. Not to scare you or anything since the chances of that happening are minuscule.
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Hello ladies! I'm down to one round of Taxol left! I have had some neuropathy but I didn't do any icing to prevent it so it's not surprising. Due to the neuropahty, the last two weeks they have lowered my Taxol dose by 20% and I gotta say, I feel pretty good, lol. I think I almost forgot what it feels like to not have full dose chemo every week. I can't wait to get back to normal. I still have all my eyelashes and eyebrows and I think my hair might be growing back or it might just be that I didn't lose all of it to begin with and so what I kept is growing back. I shaved my head a couple of weeks ago and now I see and feel growth, but who knows.
Antigone, I like Fritz's suggestion on the IUD. Whatever you choose to do, it ultimately is YOUR choice so your doctor cannot force you to remove it. Stay strong and be your own best advocate. After all the research I've done, it seems like there are two sides to every medical opinion making it very difficult to navigate what's the right course of action. I think doctors just don't know for sure sometimes and they choose the most conservative option, which might not be what we would choose or even need to choose.
Happy New Year, fellow warriors!
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Hello everyone! After reading for almost an hour to catch up, I think you all are amazing and strong women. This is not for the faint of heart.
I am doing my fourth and final A/C in the morning. I hope the next step of this - fighting the HER+ is not as hard.
Annie
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