Starting chemo April 2019
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Congrats StayingPositive and Marylinn on finishing TC. 😃 I finished two weeks ago. Still struggling with fatigue. I start my radiation next week. I’ll have 20 treatments. Not much recovery down time. But I’m kinda glad, want this BC treatment stuff to just be over and learn to live my new normal.
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PrincessofMeh, Exciting news
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PrincessOfMeh, congrats on the CT results. It is fantastic.
marylinn222 and stayingpositive2019, congrats on finishing TC.
I will start my Taxol next week for 12 weeks, likely ending in mid September. Had an appointment with the surgeon yesterday. She told me my surgery will most likely happen after 4 weeks after my last Taxol, therefore it will be going into October.0 -
PrincessofMeh - that is awesome news!! Congratulations Marilyn and stayingpositive!! It's a great feeling to finish even if it is just a section of treatment. Tomorrow I have #6 of 12 weekly Taxol. I will be celebrating being halfway done with this part
Then it will be on to radiation. Have a great week everyone
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Trying to decide whether or not I should go to a library block party this evening. Is brown bag day and the hubby (who is a deacon at our church) delivers that to elderly widows in the area. I"m going along while he does that to pick up loss leaders at the market before sales change over tomorrow. Considering how dead my legs are, doing both probably would not be wise, especially considering we're driving to Hagerstown to visit the in-laws tomorrow and any time I get in the vicinity of craft stores not here (Hobby Lobby, Michaels), I always want to check that out.
OTOH, I'm heading into the hard part of treatment. I don't expect I'll be able to run around after next spa day. Not much, anyway. So yep, I should definitely go. Pick up my adult summer reading program log, at the very least. Then go to Hagerstown tomorrow and buy a truly obscene amount of yarn. LOL
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Waaaay behind on reading and catching up but it is so great to see everyone pushing through and some of you even finishing up! Karen (Princess of Meh) Such GREAT NEWS on the clean CT!!
For me A/C did not do it's job....After the four rounds, had a repeat MRI and there was almost no change in my tumor so, I am scheduled for surgery on Wednesday.
I know some of you already had surgery before chemo but I am a little nervous since the chemo did not work. As of right now I still have not 100% decided what do do surgically. I am having mastectomy on Rt and cannot spare the nipple, too close. I have implants (cosmetic, years ago) that I will have removed as the cancer is all the way through to the implant capsule. The left is optional in all aspects but will have to "match" the right at some point. I have been leaning towards full mastectomy on left as well, including the nipple, for symmetry and that is what is scheduled but can do any range of things according to both my surgeon and Plastics. Plastics highly recommends leaving the nipple on left but I am not convinced as I may just tattoo them both with something interesting later on...
Those who have had surgery already, what did you decide and why?0 -
SaltyPepper, what triggered you to decide to do a MRI? I just finished the 4 rounds of AC, I asked my oncologist and the surgeon how would I know the AC was working. They both assured me that they felt the lymph nodes are getting smaller, but I am very much to want to know for sure. It the chemo did not work, I would just rather stop now.
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SaltyPepper, It is such a hard decision on what to do! I had a single mastectomy with an expander placed before chemo. I have finished my AC chemo and in the process of 12 weekly taxol treatments. Honestly, I wish now I had done a double mastectomy for a couple of reasons. One is that it is a pain having to try and make my breasts match everyday and I don't feel comfortable going without a bra because of the size difference. The other is just piece of mind not having to worry about getting breast cancer in the other breast. My plastic surgeon said he would remove most of the breast tissue in my other breast during reconstruction so I wont have to worry about it and they would match better. It would have been easier to just do both. At first I was worried about lack of feeling in my breasts and thought I would be happy if one was more normal and still had a nipple with feeling. Now I just want to have matching breasts with no cancer! My breasts were a big part of my identity before cancer. Now....not so much
It is such a personal decision and everyone is different, but this has been my experience 0 -
sparkle, thanks for sharing your experience. Sorry you are having second thoughts but I hope your surgeon can make it better for you. I think you are only one week ahead of me w Taxol. I have #6 this week and will be so happy to reach half way point! I go on to rads too so we'll have to keep up w each other.
Salty, I had lumpectomy so I can't offer much advice. Just gather as much information as you can and decide what is best for you.
fac, how are you doing since the transfusion? My hemoglobin reached 9.4, but then went down again to 9 last week. ANC is headed downward also on the Taxol and I hope I don't need neulasta again. I still have 7 more to get through.
Generally I am not having any SE on Taxol. Icing hands and feet each time and taking my supplements to prevent neuropathy. My nails all look good. Hope I keep this good fortune to the finish line!
Shine on my warriors! MM
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MsMari, Yes, we are one week apart! I have #7 this Thursday. I was excited to be halfway done! My SEs have been minimal on Taxol as well. I am icing hands and feet. I am more tired, especially on Sunday and Monday. I am still working full time so it really has not been that bad. I just go to bed a couple of hours earlier than I used to
So much better than the Red Devil (AC)!!Hope everyone has a good week!
Debbie
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Salty, I had chemo before surgery in 2015. During chemo, we could feel the lumps (breast and one in my arm pit) getting smaller, but the path report showed that about half of the cancer was still live at surgery time and my margins were questionable. Made my onco so nervous, she ordered an immediate CT and I repeated CTs every 3 months for a year, then every 6months the next year. Anyway, I had a bmx. Had them take both breasts. Partly because I'd had a lumpectomy in my other breast when I was very young so as far as I was concerned, it was a known troublemaker. Partly because having just the one would've felt like being an off-center booby unicorn to me. Mostly because I am an anxiety-ridden nutter and I knew I wouldn't be able to take mammos if I'd kept the other side, especially being I'd never had a mammo that hadn't required a follow-up diagnostic mammo and US up to that point (I started annual mammos at 35 due to the lumpectomy when I was younger). I would've been a basket case I wouldn't inflict on my worst enemy. My surgeon left it up to me and I never regretted the bmx. Or not getting reconstruction. My surgeon suspected IBC, which means no reconstruction for a minimum of 2 years, but even after the 2 years were up...nah. I like how I look, like my teeny tiny scar line, and I am always 100% comfortable.
Really, it's up to you, what feels comfortable and right for you. My experiences, feelings, and reasons aren't yours or anybody else's.
Anyhoo, I'm finally starting to bounce a bit from my last spa day despite a busy few days that really taxed me more than I expected. Yesterday was my first day of not having to be anywhere, which was nice. Had a lazy day. Today, I finished a painting I'd mostly completed on Saturday with a couple of friends and then painted 2 more. Actually, I'm waiting on paint to dry to put a finishing touch on the last painting, but whatever. All 3 paintings are terrible, LOL, I'm a horrid painter, but wth, is relaxing and fun. New release money from the last book will begin depositing into my bank account Monday so I'm thinking about buying a cricut explore air 2. I'm anticipating my July will be extravagantly horrible because of my last 2 spa days and the new craft gizmo might be a good (if expensive) distraction.
ETA: Chemo funny! You guys know how I refer to treatment days as spa days, just one of those things I picked up from 2015 chemo group...Well, my youngest son (who is 18 now) suddenly realized this week that when I talked about spa days, that I wasn't actually going to a spa. In 2015 and here we are more than halfway through my plan now, he didn't equate treatment with spa days. He thought I was going out for a massage, getting my nails done, whatever. Oh my, I haven't laughed so hard in I don't know how long. Teenagers can be pretty oblivious in my experience, but wow, taking it a little far, aren't we? LOL
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Fac03-
I had the MRI because my tumor is 8cm, easily felt and did not seem much different at all. My tumor has been very tricky all along and much back and forth on what to do from the beginning. There was even some thought of inflammatory etc. With a mass that big that grew so fast they also suspect that there is likely more than one tumor that all mashed together so the biopsies don't tell a good story on something so big. Better to get it out. They had just hoped it would shrink some to help with taking it out.
Karen0 -
Princess and Sparkle Girl-
Thanks for sharing! You both echo what I have heard from others, that they have no regrets on the surgery or that they wish they had done the full bilateral if they didn't. Today I actually went for a real spa day with my daughters. We have a Korean spa here in Chicago, has big pools that all of the ladies get into fully naked, you lounge and swim a bit and then you can get optional spa services like scrubs, massages etc. I was sitting looking and all of the HUGE variety of women, tall, short, fat, skinny, big, tiny, perky, saggy, natural and fake boobs, nobody really cares. We think they do, but nobody does. It is only a personal decision.
I am going to remove them both, and the nipples on both sides. put temporary spacers in and deal with reconstruction when the radiation etc is over.
Thanks for letting me talk it out and sharing your perspecitives with me too!
Karen0 -
Salty- best of luck on your surgery!
Sparklegirl - Congrats on reaching the 1/2 way mark!
Princess -Congrats on that great CT scan!
I am sitting here waiting on my 3rd taxol. We went on vacation last week and now back to reality! One more to go and then radiation. I don't know how much I can celebrate after being done with chemo. It will be great to be done with it but the real celebration will be after rads are done!
I saw a quote from Elizabeth Edwards yesterday and thought I would share. "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." I think we all have done a great job 'adjusting our sails'!
Best wishes to all who are on deck this week!
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I've had 3/4 Taxol now, and I have to say, for me it's been SO MUCH EASIER than the AC. I do have bone pain and extreme fatigue days 2,3, mild symptoms day 4, than back to normal. I've regained lost weight, been fine at work, I thought I would need to take a medical leave back in May because I had so many problems with AC and I was expecting similar ups and downs with Taxol, but it's been (relatively) easy. I've been icing and there is a ridge of black on my toenails but no neuropathy noted (yet). I'm not posting often but following everyone's updates and feeling so comforted by not being alone.
I'm meeting with radiation oncology Friday to prepare for radiation starting in late July.
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Man oooohhh man.. Do we ever keep adjusting those sails!
Gale force winds, snow, sleet and hail doesn't stop us!0 -
The day started great and I was supposed to have my first taxol today...then it all changed.
Met the oncologist, she agreed to schedule a CTscan. Went to the infusion center, my favorite nurse would be with me today transfusion (great). Then she told me I couldn't get the taxol today because my temperature was rising steadily (first 99 before meeting the oncologist, then 99.4, 99.6 and 99.8). I was a bit disappointed as I wanted to finish after second week of September, now it got pushed back by another week.
I talked to the scheduler to see whether I could have the CT done today as husband would not able to drive me in the next few days. She said I just have to wait for 2 hours in between drinking the liquid they gave me. I had no problem to wait. Then she realized I took metformin, but because I took the med last night, therefore it was okay, if I were to take the med this morning, I would be able to take the scan. I told her my metformin was extended release which meant (I assumed) it would be releasing like I took it in the morning, She said I had to check with the CTscan department. I had offered to just schedule for another day, but she said just "go down to check".
I went to the CTscan department. I asked the tech whether I could have the scan today given my metformin (again, at various points I offered just to schedule it for another day), she did not know, but if you could picture someone who was OVERPAID, underworked, and the way they enjoyed their 8 hours "work day" was to waste other busy people's time, it would be her. She decided to call ALL of my doctors to find out whether I could do the scan. She insisted in talking to the doctors. When I pointed out she asked the wrong question, and the wrong doctor and offered to just to reschedule to another day. She just went on to call the next doctor. When she finally called my oncologist, the oncologist suggested to reschedule to another day if there was a concern which was what I told this tech to begin with. I could see she was disappointed when she finally put down her phone. I went back to the scheduler and got it reschedule for tomorrow at 6:00 pm when my daughter could pick me up.
Somehow I thought I had been blacklisted by the CTscan department. A few years ago, I went for a CTscan, a tech gave me an injection, he did not wear gloves and the injection was done outside the changing booth with both of us standing. My blood dripped all over his hand and arm. He told me he did not prefer gloves because he could feel the veins better. When I left, I must looked so distraught that a few people stopped me to ask what happened. Finally someone directed me to talk to patients relations. I got an email and a few calls from the head of the department, she acknowledged what had happened, promised to make sure it wouldn't happen again, and re-read my scan to confirm it was done properly. (I still could not shake off the image with my blood in his arm). Ever since, I just felt that I did not get the proper service from the department.
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Wow, fac. As many CTs as I've had (at least 10, possibly as many as 12), I've never had problems anywhere near like that. Honestly, I would've left. You want to treat me like a cog in the wheel, as though common safety protocols are just suggestions, my money (CTs aren't cheap) will spend elsewhere. That is just appalling.
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Unfortunately, until my procedure for BC is completed, I felt I have to stay with them. I just have to pray they have the right person each time.
The hospital is close to my house, less than 10 minutes drive time. It was why I went there years ago. I have retired, hence when my PCP suggested a MRI for my back in Jan. I scheduled the appointment to an University Hospital 45 minutes (assuming no traffic) away. But the day of the appointment, my leg was swollen, eventually my doctor sent me to ER for DVT (back to this hospital). Stayed for two days, they did tons of test. I went back for nearly 20 day stay, another more tests and confirmed I have BC (there is always a little voice inside me questioning whether I really have BC, just because it was detected in this hospital). My PCP and my oncologist are in the same medical group as this hospital, hence they can easily pull out my tests. The cancer center/infusion center occupy a section of the hospital, I am not sure whether it is part of the hospital, but my oncologist's office can just schedule CATscan or any tests easily.
I went to the CATscan on Thursday, it turned out I still have to do the injection dye. They needed three different techs to try to put the needle in my arm, when the first one found the vein was too small, he put a bandage on and asked a another tech to try. The facility has nicer moving carts for the injection (a few years ago, the tech had to walk across the hallway to get the bandage etc). What surprised me was that while they put on the gloves, they tore off the part that covered the index finger. They told me it was easier for them to feel the vein. I am not sure whether it is normal.
The "good" new is that I got the call from my oncologist, my CATscan came back showing the lymph node has shrunk. It went from 5.2 cm in February to 1.6 cm now. I couldn't believe it was 5.2 cm in February.
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Yeah, I can't say that having my team split between hospitals has been a pleasant experience. My onco and radiologist are at the hospital here (about 20 minutes away, maybe not even that), but we drive to Baltimore to see my breast surgeon at Mercy, which is I don't know maybe 2-2.5 hours away? There's no breast surgeon here, only a general surgeon, and I just wasn't comfortable doing a bmx without a specialist. Anyway, my onco and breast surgeon can't stand each other and getting records from one to the other is an odyssey. I don't regret it, though. Other than the lack of specialists, not exactly a shocker considering where I live isn't a metro area to say the least, the hospital here is outstanding.
Anyway, fac, that is GREAT news! Chemo hit your tumors like a nuclear bomb, which is fantastic.
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How is everyone doing? I;m having my last Taxol tomorrow, then on to radiation. Taxol has been super easy, I feel entirely normal, anemia has improved, exercising again at the gym. Hoping radiation is okay.
I actually am worried about the end of active treatment: I'm triple negative, so there's nothing else to do during the high recurrence window of 3 years. I do love to exercise, so I will do that 5 days a week, and the low fat diet. Alcohol I'll have no more than three drinks a week. I worry about my emotional management of the waiting to see if I recur.
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Thanks for posting farfalla! Our thread has slowed down a bit with some ladies finishing treatment. Congrats on coming to the end of chemo!
I've got 6 more taxol and I agree it has been much easier than AC. Then on to rads. I haven't done my research yet on how to prepare for that. Guess I need to pop over to the Rads threads and see what I can learn.
I have been pretty careful with diet since diagnosis but admittedly slacked off some during chemo bc my tastes are so off. I plan to get back on my gluten-free and plant based whole foods diet as soon as I'm done with taxol. Luckily I have been able to exercise during chemo and I think that's why I've felt so strong throughout.
Speaking of wine farfalla, I was reading some threads on here and women were getting a little snarky with each other about whether ANY alcohol is OK now. I was an occasional social drinker pre-BC and due to chemo I haven't been very social, avoiding crowds and restaurants, so it's been easy to avoid temptation. I haven't decided yet if a glass of wine now and then will be a thing for me once treatment is done. I've never been an extremist, but this DX is the most compelling reason to give it up entirely. On the other hand, I feel like I need to treat myself occasionally. i was really shocked at how judgey some women were being about wine consumption. Everyone needs to decide their own comfort level. Wine does seem to help me sleep and there is compelling evidence on the health benefits of uninterrupted sleep.
Cheers to the ladies finishing their chemo! Hope you will continue to post here and let us know how you are doing!MM
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Have a great last day of chemo Farfalla!
I agree Ms Marie, taxol has been a dream compared to a/c. I have been able to work out more than when on a/c but my cardio stamina is the pits right now but at least I am trying! The alcohol thing is a touchy subject but I agree that everyone has to do what they are comfortable with. I saw something recently that said while alcohol is a risk factor for breast cancer they have not been able to prove that it plays a factor in recurrence. My moto before being diagnosed is everything in moderation but moving forward I am not sure if I will still apply that to alcohol or not drink at all.
I have been wondering what everyone is doing or has done to celebrate their last chemo. I really don't feel like celebrating until after radiation is over if I want to celebrate at all. Initially I thought I would have all of my good friends come on my last chemo day and I would ring the bell, etc. Now I really don't know if I want to tempt fate by making a big deal of it at all. I haven't liked giving cancer any more attention then it deserves in my life so why start now? Don't get me wrong, I will be very happy that phase is over but thinking I want to walk out of there gracefully and say "Peace out chemo" to myself. I know my husband and my good friend who has been with me since the beginning of this will come but I may keep it just to them. I am anxious to get this whole experience in my rear view mirror!
Take care everyone!
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Awesome that so many are done or close to the end.
I had BMX last Wed and the recovery has been less terrible than expected. Funny how our standards change! Drains out yesterday, which was a big relief. Still waiting to hear on final pathology though to see if I will need the taxol or just move on to rads like many of us here. This is a very long wait this time.....
I am a little more shocked than expected about how mangled my body looks. I don't know why actually as I have seen many pictures but to see my chest so mangled looking, the incisions I expected but not the lumps bumps, and overall look of a total accident vs planned surgery... I think the "chemo" effects adds to the overall shock of how much worse I look than how I feel really??
BAM- I totally get the quiet walk away of "peace out" vs the celebration. Totally my style as well, no bell ringing or toasting over here either. Too much to anticipate still to tempt the fates.
MsMarie and Farfalla- drink, don't drink, totally a personal decision. None of us has cancer due to drinking alone. This disease is so complex and has 1,000+ risk factors that all accumulate and combine in a magical mix of genetics and genome. Do what works for you! No regrets or right or wrong answers here I believe.
Karen0 -
Salty-healing thoughts to you as you recover! Hang in there!
Bam, I feel the same way about low-key exiting treatment. I don't even think my center has a bell to ring, lol!
I do plan to do something special for the staff at my chemo center, such as a sandwich tray, edible arrangement of fruit and maybe some decorated sugar cookies with "thank you", "you're the best" type messages on them.
I will wait until I am done with rads before I celebrate with my circle of support. But I don't know what type of event, maybe meet at a restaurant that has a separate party room. I am married with two teenage boys. My husband has been a rock. My boys don't really like to talk about it and are at that age where they would rather watch paint dry than hang out with adults! 😂 I have my parents and brother here, who have been amazing support. I have a small group of girlfriends that I told, 10 ladies who have been of great assistance to me, some have taken me to chemo, some helped me out with boys, some who brought dinners, some exercise partners, others were just amazing emotional support. Suggestions are welcome!
Happy 4th 🇺🇸 MM
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Salty, I wasn't enamored with how I looked right of surgery either, but that angry red blech becomes a teeny tiny silver/white scar line pretty fast. I'd seen what reconstruction looks like and I just prefered my neat little line. You can always change your mind and do reconstruction so if you really don't like it, you aren't married to it. :-) I will say, however, to give yourself some time to grieve. Losing my boobs didn't hit me as hard as I thought it would, but I did still grieve.
Anyhoo, spa day #5 today, one more to go. My legs are super, super shaky and unsteady so I'm not going out if I can help it until this is done in 3 weeks. Stocked the freezer with a bunch of convenience foods and easy stuff the hubs can cook. Netflix is my BFF.
In 2015, I celebrated the end of chemo by making a poster plus doing a pic at the cancer center and remember, I had my bmx and rads to go yet. I say celebrate every chance you get. Heck, make some milestones up out of thin air if if makes you grin, LOL. Finishing this time...I think I'll hit the bakery and take in a brownie assortment to thank the nurses.
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My first taxol was supposed to be June 25, it was cancelled because my temperature went from 99.2 to 99.8.I was looking forwarding for the next appointment. But then I have severe pain the buttock area, I could neither eat nor walk.
I checked into the ER on Sunday. The doctor admitted me to the hospital because my temperature was 101 (my last few days have been between 98 to 100.8). After a series of tests, blood culture, they now believed that I have bacteria in my blood stream. Hopefully tomorrow or the next day, they can determine the type of bacteria and the right antibiotic.
When I leave, I will likely be getting in home IV antibiotic for 4 to 6 weeks. It it too early to know.
However, the doctor told me that I may need to remove the port as metal will be the first to be infected. they also got the oncall oncologist to talk to be (my oncologist is on vacation), the oncall oncologist told me I might not need to have the port removed because they have to show that the blood draw from the port has bacteria then we would know whether the port is infected. I questioned why the blood draw from the port would be different from the blood draw from my hands. My gut feeling is that he is wrong.
I don't feel too bad though. just hate that I couldn't do work at home.
Happy July 4th !!
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Thanks Princess- The weak legs you often describe do not sound fun- May these next 3 weeks go smoothly. I have great admiration for your positive attitude, truly!
I am planning basic reconstruction, I have expanders in but I am only shooting for "not concave" I was barely an A cup for 47 years of my life, had implants placed cosmetically 3 years ago. Now I am fine with going back to an A or barely B cup just because I am pretty thin and it makes me look ill to have my ribs so prominent.
Fac-I am so sorry you are in the hospital. IV antibiotics for 4-6 weeks? I then assume you will be pausing your taxol during that time too then? If they draw at your Port and it is infected, I imagine your counts will be much higher than at the peripheral? They would maybe draw simultaneously to see?? Nobody expects all of the extra surprises of treatment do they?
As for celebrations, I did not know I was stopping chemo the last time I was there- so it wasn't even an option of doing something to mark the occasion. Hoping I am not going back, so that decision was made easy for me. Making up occasions to celebrate is not anything I would have thought of (great idea Princess) and speaks to your general outlook- I am a nose down, push forward person and love hearing what you ladies think of!
Happy 4th, it is about to storm in Chicago, hope you all have better weather!
Karen0 -
Hi Everyone!
I haven't posted in a while. Although I haven't posted, I have been reading your posts.
Congratulations to everyone finishing up your chemo. I am also done with chemo as my MO 'cancelled' my last round due to my sepsis and continued antibiotic therapy post discharge. Kinda anticlimactic. But I am so glad it's behind me....
My chest wound is just now closed (from where my port was removed, and left open). Thank goodness! The wet to dry dressing changes really worked with closing up the wound.
Starting to get my energy back a little.
Had radiation first, so I guess, I'm done. Although I admit, I am nervous and hope that the cancer is gone for good. I know I will be on pins and needles when my first post treatment mammogram is performed (December 2019).
I am just barely starting to get some hair on my head (very barely), looks like peach fuzz to me. Is anyone else getting hair? peach fuzz?
FAC03 - so sorry to hear of your infection. I just finished my antibiotics from when I was septic (port infected). Carried the little pump around with me 24/7. I was not discharged from the hospital until my blood cultures came back negative THEN the 4 weeks of home antibiotics every 4 hours started (naturally I got antibiotics LOTS in the hospital). BTW - ask for (if on antibiotics, which I assume you are, or will be) a probiotic. Start it while in the hospital and continue until you finish your abx regime (the last thing you need to develop is C-Diff).
I hope everyone is enjoying the holiday. Happy Summer!
Best Regards,
Ro
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princess, is the chemo causing your leg shakes? Hope it resides soon!
Fac, I am so sorry about your infection? Do they know if it had anything to do with your transfusion? Hope you are on the mend!
Robin, good to hear your wound is closed! I had a hematoma after my lumpectomy and my dermabond/ incision opened up. My BS said if he closed the incision back up, it would become infected so I literally had a hole in my breast for almost 6 weeks. I had to wear a maxi-pad in my bra to catch all the drainage. I was so worried it would get infected, I feel so fortunate I didn't develop any complications. Nothing like what you went through.
Hair update: I have significant peach fuzz all over. It's white😞. I kept about 30% of my hair through AC. After my 3rd Taxol I lost all but about 10%, but was never bald, already had the peach fuzz growing in. But I stopped the cold capping. I am wondering if I will keep the peach fuzz or if my last 6 taxol tx will make it all fall out.
Taxol # 7 tomorrow!
Cheers everyone
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