New cancer? Recurrence? Scared crazy!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    i just finished pmming you bex,took me an hour! tell the onc, since hes the only one there, you need some more help than you are getting thru this! sounds to me like you need a vacation from your family...

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    please, if you are even having thoughts like that, it may be the tamoxifen talking. if you seriously think you may harm yourself or cant stand it one more minute, please call 911, or call your tx center! they must have someone to respond to this kind of an emergency.....or please just come back here and talk to us; go to any thread that seems appropriate, and let them hear how you are feeling! it is what we are here for!

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  • Bexter3
    Bexter3 Member Posts: 61
    edited June 2014

    you r right Kathec! I do need a vacation from my family. Maybe they'll realize I'm not all that bad after all. I'm going to find a sitter for my son and head to Steamboat Springs for a couple days. Maybe they'll even miss me, I'll leave my cell phone behind... See if they think their lives are better without me. My counselor asked my chemo team what I was like in treatment... They said, she was a riot, always positive, couldn't stand up, but was a "lean up comic" (I leaned on a wall and told jokes for about the first hour of chemo, then I'd collapse. So my counselor asked me what changed.... Uh, 2 years of monthly infections in the post-mastectomy site, severe radiation damage needing transplants every 6 months since 8/2011 and until at least 2016, about 10 life or death hospitalizations from chest infections and 33 effing surgeries since 6/7/2010. There's only so many times I can get kicked in the face, stand up and say "Thank you sir, may I have another." I guess I just have to learn to accept the things I cannot change, change the things I can and have the wisdom of where to bury the bodies of people who piss me off with such stupid questions!! LOL, now for a serious and funny thing. EVERY time I go to the dr, I'm asked when "was your last mammogram?" ... I'm a BMX with no reconstruction. In the past, I've looked at them, then my chest and said... Uh 2010? Today I said, "yesterday, but they couldn't find anything" in my head I said "here's your sign" (from bill Engval when people say things so obviously stupid....here's your (idiot) sign...) gotta nap. Love you all, we are all sisters in this! Big hugs, thanks for the love and support.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    ..ok that kinda sadly does crack me up that they keep asking you, about the last mammo... do they even know you at all??? Mine know me! cause, i asked them about EVERYTHING!! my OLD B.S. even started writing in her reports, "well-known to us", when she would do the clinic notes. Well,yeah, i would hope they are familiar with me... better than "who the heck is she, again?" anyway, i am beginning to detect a little humor sneaking back into your posts...

    Do yourself a favor, go to the triple positive thread... lots of good women there, i think you will be happy you did. Also, use the search function to look up SusanHG123. She is a riot!  You wouldn't believe some of the stuff she has had to deal with, especially concerning her husband! i love her to bits!

    I thinking going on a mini vacation by yourself is a great idea, i would stay as long as i can. i would take the cell phone, just dont answer if its them. treat yourself well.

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  • Bexter3
    Bexter3 Member Posts: 61
    edited June 2014

    thanks Kathec. I actually had a major epiphany and snippet of understanding in my brain. I need to journal more to fully understand it, but think I'm on top of it now. I'll soon be back to my stand up routine... LOL!

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  • Q324
    Q324 Member Posts: 19
    edited June 2014

    Bexter - you are awesome! Thanks for the giggles.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    ...and keep coming back so we can love you more!

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  • Togetherness
    Togetherness Member Posts: 202
    edited June 2014

    Well I decided to come to the swell side.  I was diagnosed with LE today by my oncologist.  Thinks I am in the early stages and it can be managed.  I would hate to see late stage LE.  Fingers look like sausages, arm is tight and swollen and side of face is swollen. It is all on my left side.  I hope it doesnt move down to the lower limbs.  The bad part is that the LE specialist can't see me for a week..... Ugh.  Just down in the dumps with this recent diagnosis.  I will be doing lots of research for sleeves and massages and what LE is all about.  Any advice is greatly appreciated!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    Togetherness, sorry to hear that. there are lots of great lymphedema threads here. look for binney and kira, they are great! in the meantime, elevate your arm while you are lying down as much as you can, and drink lots of water. try not to cut a finger on that hand, and moisturize and keep very clean! good luck to you, and LE therapist will show you how to help yourself. you can go to you tube, and type in manual lymphatic drainage, and there are some great women there who will show you how and why.

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  • Togetherness
    Togetherness Member Posts: 202
    edited June 2014

    Thanks kathec I looked up binney and found a massage that she had posted for someone else with swelling of the face and will try doing that.  It is so swollen now that my eye is bloodshot because of the pressure and I have a migraine.  Not sure I can wait until my appt on Tuesday.  Really not sure who to call or just go to the ER.  So many people don't know how to deal with this.  As I wasted a month with my primary physician and got no relief.  So finally I said I am going to my oncologist.  I wanted no more drugs that didn't help the swelling.vgonna go on you tube as well.  Thanks

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    geez! I think i would try emergency! that sounds really bad and painful! i think that they would have some one there that would know about lymhatic drainage! i am so so sorry that this is happening to you. it is just awful to think our treatment centers never warn us of this.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Togetherness, did your doctor do an ultrasound to be sure you're not dealing with blood clots? This is not a typical presentation of lymphedema, and I doubt a therapist will be willing to touch you without further diagnostics to figure out what's going on. Have you been on a wide-spectrum antibiotic for the possible sinus infection? I sure wouldn't recommend trying massage until you know what's going on, because if there are blood clots involved lymph massage is contraindicated. If it's getting worse, by all means do go to the ER and insist on some answers.

    Please let us know what you discover. Gentle hugs,
    Binney

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    togetherness, are you there? how are you doing? everything binney said is spot-on! i will click on you name to see where you are, hope you are finding some relief, or help!

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  • sbetts
    sbetts Member Posts: 35
    edited July 2014

    you are in my prayers. Lymphadema stinks no matter where it is. And yes, cancer sucks to put it mildly. Reading your posts I don't think you are a shell of the person you once were. I believe yiu have evolved into a more conscientious person and are still very strong willed. May God give yiu guidance peace during these trying times. 

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  • Bexter3
    Bexter3 Member Posts: 61
    edited July 2014

    hey sister Kathec, turns out it's not face/neck lymphedema at all. Just after my last post Jun 4ish, I was still feeling under the weather with all kinds of crazy symptoms... You know the kind that you look at, shrug and say, "just another cancer treatment gift I suppose." On June 9 I was in pain (as usual so no big deal) and started puking and couldn't stop. Then my right flank back started hurting. I had been hiking and fishing that morning so I thought I twisted something, but could not stop vomiting. Had to go to the ER since it was a Sunday and I was out of Phenergan. Turns out I had a 5mm kidney Stone. ER doc laughed because I am known (small town, same docs) to have a very high tolerance for pain. He couldn't believe I had been hiking and fishing - especially in a remote area 3 hours from the nearest hospital. 

    Anyway, they hospitalized me because it was big and my normally low blood pressure of 111/72 was 156/98! Middle of the night they decide I need surgery. Fine. Stone gone, severe pain like an episiotomy, but I went home. I was supposed to see the urologist the following week on Wednesday. I called and cancelled saying the stone was gone and I saw no reason to go in. They called me back and insisted I come in and re-establish a relationship with them (saw them during chemo since Carboplatin screwed up my bladder). I kindly refused and said I had plenty of relationships with doctors and really didn't want another.

    Later that day, I get another call, asking me to please re-consider and just come for one visit. (F$&@ing) FINE! I'll be there! Within 5 minutes dr says, "we didn't expect to see this in you for at least 2 more years, but since you had such severe problems with your bladder during chemo and Carboplatin is known to cause bladder cancer, well, I'm just going to say it, you have bladder cancer. My response... A very apathetic "of course I do." He asked if something was missing from my medications list (apparently already talked to my primary) I told him I had recently stopped 100mg of noratryptaline that I had taken for 4 years of post mastectomy nerve pain. He said, "unfortunately, noratryptaline is known to speed up the development of bladder cancer." My response, still in the same seated position, chin resting on my fist, another very apathetic, "Of course it does." He went so far as to tell me once testing was done he was going to start a procedure, which I looked up and is chemo injected into the bladder.

    Then I saw lymphedema specialists like crazy for the face/neck lymphedema. Final result... Extremely unlikely diagnosis since no lymph nodes clavicle up were removed... After weighing myself in the morning then night, and learning the swelling developed over the day... It is likely beginning stages of renal failure.

    The symptoms are getting worse daily, I've dropped 16 lbs in 30 days without trying - which I've been trying to lose weight since chemo!! Still in the work up phase, don't know what stage. I've had symptoms for years, just thought they were left over damage from BC treatment. 

    How do I feel about not being able to pee when I want... Pissed off! LOL! Will keep you posted.

    But cautionary tale for my sisters out there...

    Hugs and love to all of you!!! Beckey

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    becky. what the hell can i say, but that is so fucked up.... i have wondered about you, pretty sure i saw you over on a binney thread, and was happy you found your way.... ah, man.. as if it would be bad enough if it WERE facial lymphedema.. and so, when were they gonna tell you that you had such damage to your bladder? that is so messed up, especially with the drug COMBO, you think they would have WARNED you!!! and so they must have known. When were they gonna tell you???? they m.... oh forgive me please, i cannot stop cussing on your behalf.... i am so so sorry that this is happening to you...the treatment is the bark, and the after effects is the bite. i am just gonna be sorry and sad for the rest of today, and i am telling all women about this. the consequences of treatment for BC, its just too harmful.. i cannot believe i am hearing this, my god. I am going to say some heavy duty prayers for you, and those fuckers better be trying to figure out how to fix this. i had never heard that about carboplatin.. thanks for the heads up, and i am here for you. love and sorrow, kathe

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2014

    Bex, I am so sorry about all you're going through. The regional chemo is promising, though, and I hope the necessary tests will be completed quickly--the waiting rots, for sure. Onward! Please do keep us posted. Hugs, prayers,
    Binney

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  • Bexter3
    Bexter3 Member Posts: 61
    edited July 2014

    Kathec, I so love you! We think a lot alike. Saw my primary Tuesday, who called the urologist because she didn't understand how they could know I have bladder cancer without more biopsies, pathology, etc. Just got an email from my primary, she was very somber and wrote, "you were right, he's worried you have it based on the kidney stone scope" and history and they just need to prove and stage it. Having a cytoscopy on 7/30, with biopsy... The whole thing just pisses me off... Pun intended. LOL! It'll be alright. 

    Past two days I've drank over 3 gallons of water, feel like my bladder will burst. Going to the bathroom every 1/2 hour and only getting drips or a tablespoon at a time... Looks like another sleepless night. My posts on post mastectomy pain syndrome has received so many private responses, I need to jump  over there and post some reading, research and specifics... Hugs

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  • Bexter3
    Bexter3 Member Posts: 61
    edited July 2014

    binney4, thanks for the support. My primary asked why I hadn't complained of symptoms sooner... She's young, 2012 graduated from med school, but I still love her. I said, Dr. J, of all my friends who have had a lot of chemo would agree, the body does such crazy things, if we woke up one day with a purple tongue and fluorescent green polka dots, we'd just say... "Hmmm, whatever." Ya just get used to crazy crap happening with your body. Everything will be fine and I'll keep you all posted. BUT IF YOU HAD A PLATIN (carbo, cis, etc) DONT IGNORE BLADDER ISSUES OF ANY KIND!!!! Hugs to all of you my sisters! Bexter

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    bexter, thank you for letting us all know this. several months back, i was having an issue, where, i felt i had to pee, but only a dribble came out, and i was drinking a lot of water. so they gave me an antibiotic, which did work a little but before i could finish it, i got this great rash all over my body! primary said to stop and take benadryl, bo more bactrim for me!! but no one has checked ever since. please just let us know how you are doing, and i pray they caught it early, and i am so so sorry that you have suffered so much already. Love, kathe

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  • Bexter3
    Bexter3 Member Posts: 61
    edited July 2014

    Kathec, weird... That happened to me 2 years ago, exact same story... But the cultures never grew anything so no UTI. But I'm now allergic to Bactrim... Keep a diary of how often you have urgency with little output, bladder pain, back pain and UTI symptoms without any actual infection...

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    Thank you bex, i will. i am just so tired of doctors. i think i have totally wrecked any kind of a good thing with my doctors and nurses at my tx center. first i asked too many questions, and now i cry with frustration in front of them, several times now. i am sure they think im a nut job. my problem is, that even tho they took out so many nodes, there are nodes on my ribcage, in my axilla, and near my breast, that are enlarged hard and painful. and they tell me that its because they are taking up the job of the ones they yanked. and they found even more than i did! and why now, is basically my question, when they were fine for so long? So yeah, when i first told them, i thought it was back. and i can hardly find anyone else tht this has happened to. just tired of after effects of all kinds. how are you feeling? and does it make you feel any better that you know whats going on? love you bex

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