Starting Chemo May 2008

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  • robink
    robink Member Posts: 336
    edited April 2009

    There's been some good stuff and shitty things on the posts this week. I haven't known what to say to anything so I've kept my cyber mouth shut.

    However - I have LOVED having DD home this week.  We've had wonderful times with movies, eating too much, massages, chats, and simply "hangin out" in peaceful silence. I will miss her more than ever after she goes back to college Sunday but my heart is full with love for her.

    SUE, FAMILYROKS, JEANO, EDDIE, ROCK, LEWING, ANGELS, GRACIE, OTTER, KRISTY, JEN, JULIE, CRIS, RAND, KARIN, KERRY, ROXI, ELLENOIRE, TEX...been thinking of all of you more than ever this week.

    Love,

    Robin K

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  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited April 2009
    When I just re-read my post from yesterday it hit me that I should have posted on the Bitch & Whinge board. Sorry girls..I have got this exhaustion-anxiety-depression thang repeating itself and I don't really know what to do. I thought I'd beaten it but I haven't. Hub and I go to central Australia on Good Friday and I will be jammed between a huge blue sky (with no clouds) and a huge orange plain. Maybe that will do the trick..that's what I figured when I booked the holiday, anywayLaughingRobin, I got the card today!! It is so cool..thank you for sending some love and happiness all this way!! love y'all.
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  • ranD
    ranD Member Posts: 373
    edited April 2009

    Just a fast post to everyone.  Long story shport, wd evening got SOB going to bedroom and had to have Zach call 911 for me,.  Literally could not catchmy breath.  EMTs came and my pulse ox was 94 with it full on 5L.  SHITE!!! They brought me to hospital and I was admitte because they thought I had a blood clot (thnk you tamoxifn) obe Ct scan ruled tat out but showed the effusions were baccckkkkkk big ime.  So, they decided to keep me overnight and drain a lung in the am.  After waiting all day for the draining, they did it at 3, then decided why not keep me another day and do the 2nd lung...which theydid this afternoon.  So, I am home at last  feeling great and going tochange from grubby hospitals to warm comfy jammies!!

    Sorry I am not responding to each of you separately, but now I have more to pray for, right???

    Love you all and prayers and :::::hugs:::::

    ran

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  • familyroks
    familyroks Member Posts: 575
    edited April 2009

    Oh sweetie...I had no idea you were in hospital.  Crappola, shit and all that.  I'm glad you are feeling better and think jammies are just the thing to get you comfy and happy to be home.  Big big big hugs to you sweet Randie.  XOXO

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  • ranD
    ranD Member Posts: 373
    edited April 2009

    I now refer to them as mom's mini-vacations...lol..the charge nurse just about shit when my husband went and told her I was ready to "check out"  they all took it as me dying...and then theyall burst into laughs!!  It doesn't help when they have a "Guest Service " repcom in and ask me if there is anything they can do to improve my stay.  I told her, well, they forgot the mint on the pillows, no turndown an did nt get a plate of choco chip cookies and milk at night.  I laughed because they made sure there was a cookie on my lunch plate.

    Anyway, just took my new med and I will be asleep in a little bit...

    I am feeling the bext since last year so this was a good thing...really!

    randie

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  • ewesterman
    ewesterman Member Posts: 417
    edited April 2009

    Breathe in. Breathe out. Breathe in. Breathe out. I was going to report that my cancerversary is today. A year ago today (date is tomorrow but it was a Friday last year) I was diagnosed. Was more into marking than celebrating. Will mark it with a Torah chanting tomorrow. I am saddened to hear about all the crap going on around this group. I am sad, Randie, that you have to go on those mini-vacations. I am sad, Jen, about work. I am sad, too, about crappy X-rays and bittersweet retirements and the fact that you still have ONE more herceptin to go even though you have one down...I am sad about Callum and sad that a lot of what we talked about this week is yuk. I am sad, Julie, that you are going through all of the family stuff and I am sad this fine group of women has to put up with ANY of this crap. I love each of you and though I am checking in less often, it is because I am working longer hours but I like that as I feel stronger. I have a friend who is going through diagnosis/treatment ideas. They got her whole lump during her needle biopsy (how cool is that?) so she may need very little in terms of treatment. Anyway, I love you all and I am thinking of you and I am so honored you allowed me to be a part of this group. When I think a year has gone by, I am starting to know that there is life after diagnosis and after treatment...so, let's get all of us through treatment and MOVE ON. I wish you all a peaceful weekend.

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  • rock
    rock Member Posts: 1,486
    edited April 2009

    Randie?  Gob-smacked. I am positively gob-smacked.

    Can't believe what you've been through and then you leave me LAUGHING.

    (I might add, your vocabulary is a little disturbing.  Warning, I feel a poem coming on.)

    Randie, Randie, SOB?

    "Had to have Zach call 911 for me"

    EMTs came, she had a pulse

    The problem was she was feeling worse

    Was it a blood clot? No, an effusion

    Time for draining, what an intrusion.

    I'm glad you're home now, not later but sooner

    And that this didn't take away your sense of humor. 

    BURMA SHAVE.

    P.S My Mom's sisters insurance companies are not paying for their tests. Does that sound right to you?  Mom has BRCA. My Aunt M has BRCA. Another sister died of ovarian cancer. What is going on?  This just doesn't sound right to me.

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  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited April 2009

    I'm back after a welcome visit from my step-daughter. Ran, feck all that. I'm so pleased that you feel better and very pissed off that we even have to have the conversation. I want that miracle..I know it's coming but I'm an impatient piece of work when it comes to my best girls. Help me understand these..'effusions'. Do you have to have your lungs drained, like, forever? Man I am over this disease.    Apart from the trip at Easter, I am counting down to the 2nd mastectomy (May 28) and the new pair of boobs. I am ecstatic about the boobs (I think) and freaked out about the mastectomy! The first M was a matter-of-fact kind of experience: cancer be gone! But this is different because it's not 'necessary'. It's wierd..it's very stressful. Maybe I have simply run out of resilience for this whole thing. I know that when I catch sight of some of the topics here when I log on..I have a wave of anxiety. I think I will have to have a holiday from the board. I tried it before but I kept logging on habitually and reading. This time I'm going to try to clear my head and get back to super-positive land. We've all read that this crash comes..was anyone else sure it wouldn't happen to us? I actually feel a bit foolish about being so darned cocky, dadburnit! XXX

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  • chiquita
    chiquita Member Posts: 135
    edited April 2009

    I had a double mastectomy on November 08 and this week was my last Taxotere...I had 3 FEC and 3 Taxotere, the last one was the worse lots of SEs and a week of bed rest...the only medicine that work for me not to throw up was Ememd, I had to take nuprogin also for low white blood cells, it work fine and I was able to give the shots my self, they are 7 shots in seven days...newlast was not offer to me but I am glad because some people who took the shot complain of the pain and the shot taken to long to work or not working, if you are taking Taxotere ask for ice gloves or put your hands in a cup with ice to avoid loosing your finger nails and the pain in your fingers...you can also prepare for pain in your foot and a lot of losing skin in the foot....I think you all should read some of other topic and suggestions from other Forum they are GREAT....Good luck and take lots of drinks and Ice water and rest!!!!!

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  • rock
    rock Member Posts: 1,486
    edited April 2009

    Thank you, Chiquita and congratulations on finishing Taxotere!

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  • ellenoire
    ellenoire Member Posts: 674
    edited April 2009

    ya... me.. here.. worried about Sue and Randie... yuck. Kerry.... you'll be fine.. swim in the sunshine from Aus and suck in all those Seratonin boosting rays! .. eat lots of bright coloured fruits and get your purple juice if you want. Bright coloured fruits are proven to up your seratonin levels!  

    Love to all! 

    Had to desribe to someone the taste in my mouth during chemo( was interviewed by Discovery Mag about my highly accute sense of smell and this came up) nasty flashbacks ...

     xoxN

     

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  • Jeano77
    Jeano77 Member Posts: 237
    edited April 2009

    Sue - Feck, feck, feck!!  I read your note about the CT Scan and I am sending prayers your way.   That was the same call that I received - the mass covering about 1/4 of my "affected" side lung.  I also asked about mets to the lung and the doc indicated that it was not likely, did not present that way.  It did sound as though the CT scan gives solid indication around that, despite having to do further testing.  Mine was "simply" radiation scarring -- treated with prednisone giving a 98% correction. 

    Jen -  I love google maps, my house has the street view as well.  Hoping the "further notice" is nothing more than a long weekend.

    Kristy - yeah to the end of herceptin! 

    Kerry - I had to smile at the kids reaction to seeing you - priceless!  I share your nervousness around the mast/recon surgery.  I am having recon on June 1 and am nervous because technically I do not "need" it.  Just like everything else, we will manage our way through it.

    Randie - I am thrilled to hear you are feeling better.  Rock said it best - you go through so much yet you leave me laughing at the description of your "mini vacation".  You are always in my prayers. 

    Rock - Not sure where I missed the post about the death of your friend.  I am truly sorry to hear that news. 

    Otter - keep me posted on when you will be in Minnesota. 

    Hugs to all!

    Jean

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  • MsKarin
    MsKarin Member Posts: 647
    edited April 2009

    Besides being busy I too have kept my cyber mouth shut. When I don't know what to say and have to think what to say it leaves space for words to creep in that I don't mean to say. When I don't think about it words just flow from a good place and are meant to be heard through me.

    Just the other day my friend called me crying. Her mother has pancreatic cancer and has not been doing well. I think I might have mentioned it a few months ago. Anyway when she first called she was crying and very distraught. We talked for about forty five minutes. When we hung up she was feeling much better and we were laughing about Jeremy. She is the aide in his regular class. I didn't realize that my husband had been listening to the whole conversation. He came over and gave me a big hug and told me he was very proud of me. I said for what? He said for what you told Stephanie. I don't even remember all the things I had said. That is why I know it wasn't coming from me but through me.

    Each morning, part of my morning prayer is: Please tug on the part of you that dwells within me so that I am constantly seeking and finding the connection to you. When dealing with others; especially those under my care please let me have that connection so that the words I speak and the actions I make Lord come from you and not of myself.

    Don't know why I just told you all this but maybe someone needed to hear it. Thinking of you ALL and sending out love and (((hugs)))

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  • ranD
    ranD Member Posts: 373
    edited April 2009

    Sue:  Prayers with you and may all your newws be good.

    Rock: POsted your poem on FB, it was that good!

    karin: Amen, can't add anything more to your sentiments...love ya!

    Jean: Surgery is tough, but a cake walk after chemo.....lol...seriously, they give you enough pain meds tomake it all seem easier....the only part that was a pain were the drains...

    Kristy: happy dance all around the living room for you!

    Noelle: Missed my purple juice he last 3 days...I was a complaining patient, I kept telling dietar more fruits and veggies!! After a day they got it and started making me these awesome fruit trays .

    Kerry" Hey I am a freakin walking miracle...lol...my chooks lay!!!!lol

    Eddie: Heyyyyyyy...I am so okayyyyyyy lol

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited April 2009

    Ladies,

    I'm with Karin. Sometimes I just can't find the right words to say but I hope you all know how much each and every one of you mean to me. Things just wouldn't be the same without your words, prayers, dreams, hope and support and I'm so glad I have you in my life....cyber hugs to all of you.

    Yeah Kristy, one more to go. I think I have herceptin until August. I didn't start it until after my AC. 

    Just signed up my daughter for cosmetology school. Holy, crap is it expensive!!!! It's only a year long but costs more than a year at our state universities. Tomorrow is a big day. My support group, Circle of Hope has a day long spa fundraiser tomorrow. All the services are $10 each with all the proceeds going to the group. I have me and the girls signed up for some pampering. I'm really looking forward to it. 

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  • sueper13
    sueper13 Member Posts: 1,224
    edited April 2009

    CT scan is negative for cancer!!!!!

    It's called "Interstitial fibrosis" and it's from radiation (thank you Jeano)..

    RanD, prayers for you.

    Funeral was sad but beautiful.  I am at my wonderful Aunt Charlotte's house for a spaghetti dinner, spending time with my (step) Dad.

    I am so relieved.  Anybody have any tips on how not to panic every time this happens, cause I'm thinking it's going to happen a lot...because we are all being watched so closely, of course they order more tests to make sure!!!!

    Rock, can you write a poem with Interstitial fibrosis?  (Stop crying!!!  But thanks and I love you)

    Love you all.  Eddie, good to see you.  Karin, I love what you said, so so true and good.  Otter, thanks for your calm and the wishes.

    Sue

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  • rock
    rock Member Posts: 1,486
    edited April 2009

    When we find a spot that is on the lung

    We get concerned about parts more far-flung

    So it's completely understandable that one develops a little neurosis

    When faced with the ambiguous presentation of insterstitial fibrosis.

    BURMA SHAVE.

    Karin... you have one of the purest souls of  anyone I know.  Just kind, through and through.  (I'm glad your hubby appreciates this about you as well.)

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  • Sable
    Sable Member Posts: 738
    edited April 2009

    YAAAAAAAAAAAAAAAY SUE! I've been worried about you since our talk the other night. I was starting to panic that I hadn't seen a post from you yet.

    RanD~ so glad you are feeling better today. I can't wait for the day you tell us it is all cleared up.

    And for everyone..... did ya'll get all the sunshine, mud and bugs I sent to you? Today was so wonderful. I talked to you guys while riding the bike, and talked to God thanking him for such a gorgeous day. i conned my dad into letting us try out the back field they own, that was 5 different kinds of AWESOME! plus this morning my dad got up and went to town to pick up wood and make us stilts to play with. I unfortunately took a spill on the 3 foot tall ones and skinned up a knee pretty good. but thats how I roll, always have. Good thing its not shorts weather yet I got a good booboo going LOL. It was just a damn good day :O).

    See ya'll when I get home! XXOO

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  • otter
    otter Member Posts: 6,099
    edited April 2009

    I am in awe.

    We have rock, who lives a secret life as poet laureate of the May '08 Chemo Group, whipping out Burma Shave verses as needed.

    And there's ranD, who tells jokes and gets everyone laughing, and even convinces her hospital to cater (get it?:  "cater") to her dietary wishes, all while she's getting liters of fluid drained from her lungs so she can breathe again.  And she calls the ER visits "mom's mini-vacations."

    And, of course, we have Sue, who juggles 3 major life events at the same time (retirement, a suspicious area on her lung, and the death of a family member) ... much like she has been juggling aircraft all these years.  (We were worried about you--I'm so glad you checked in and told us the good news about your CT results.)

    Kerry, you said this:  "Maybe I have simply run out of resilience for this whole thing."  That would be true for me.  I'm getting better, and stronger.  But, for a long time--for most of this past year--I had no reserve emotional energy.  I needed to be strong for cancer, and for surgery, and for chemo, and for my family ... and I simply had no emotional strength left for anything else.

    I think the frequent re-checks and testing batter us down. That's especially true if there's a phase when the results are questionable, because those awful memories and fears come rushing back.  All it took for me was a radiologist saying last August that the tissue in my remaining breast was so dense that a tumor wouldn't be visible by mammography.  I felt like I'd been sucker-punched.  All I could think of was that my next tumor would not be caught early enough.

    I've just been called for dinner, so I have to sign off.  I'll be back later this evening, though.  Love you all!

    otter 

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  • JulieC
    JulieC Member Posts: 324
    edited April 2009

    Wow - I'm just in awe.  We are truly an amazing bunch of women.

    Hugs - Julie

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  • familyroks
    familyroks Member Posts: 575
    edited April 2009

    YAY Sue!  I am so so so SO SO SO very happy for you! 

    Karin - you have amazingly read my mind and posted my thoughts.  How do you do that?

    Jen - we got the sunshine!  Thanks a lot!!  Sounds like you've had a fabulous day.  Awesome!

    Hugs to everyone.

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  • robink
    robink Member Posts: 336
    edited April 2009

    Oh Sue!!!  Your news is the greatest!  Thank you for letting us know.

    Karin - you told us what you did because we needed to hear it.  Glad you followed your prompting and typed away.

    Rock - enlighten me to "Burma Shave". Glad to learn the butterfly made it into your hands.  My insurance company paid for my BRCA (results negative but I'm not sure I believe it since my mother, sister, aunt, cousins, and maternal grandmother had breast cancer). My daughter is soon to be 20 years old.  I will counsel her and leave the decision up to her as to having genetic testing done.

    http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

    Jean - what type of recon have you decided to have done? I haven't begun talks with my PS yet about mine.  It's only been the past month or so that I have become aware that I "need" to have the procedure done, although I must have know eventually I'd have one as I asked my breast surgeon to leave whatever skin she could.

    Roxi - enjoy your spa day.  It sounds lovely. When will your daughter start school?

    Kerry - your Easter trip is coming at a good time for you.  Take pictures and post them on FB.  Are those chooks giving you eggs yet?  I have to say I had never heard the word chook before, figured you were talking about chickens as you were frustrated with their lack of laying.  http://www.worldwidewords.org/qa/qa-cho2.htm   What about your new boobs? What procedure are you going with?  And about taking a break from the boards - we all understand.  As you know I stayed away for 8 months. FB is appealing because there is minimal to no cancer talk there. Oh yeah, I was happy to read about a butterfly lighting in your mail box!

    Eddie - Congrats on marking your first year after diagnosis. Isn't it good to be at a point that you can say you are beginning to look back on all of this?  It is true that each of us needs to move on.  It's also true that each of us will accomplish that 20 different ways.  How nice to know that we can have this support system as we yo-yo through the days -weeks - months that will eventually become year 2-3-4-and 5!!!

    OK - question for any purple juice users.  What are the floaters in the bottle? I can't shake them away, no way I'm drinking it without knowing for sure what it is. It does look like a very small berry but it is slimy. I have found the taste to be better than the other product I was using but I don't discern a difference in how I feel. Perhaps because I have been drinking the other stuff for several months.

    It has been snowing here all day, not much accumulation but very very windy and cold. DH, DD and I attended an impressive production "The Thorn" at a local church, had a nice lunch in town then came home.  I'm being lazy this evening - writing to you, eating handfulls of Frosted Flakes and watching DD pack for her return to school.

    My hair has taken on a life of it's on and I love it!  It's different evey day.  DD took a picture at Christmas time and it is so much thicker and longer now. The only thing I'm not crazy about is all the gray so I may put a semi-permanent color on it for a change of pace.

    Guess I've gone on enough so I'll just say good night. 

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  • otter
    otter Member Posts: 6,099
    edited April 2009

    Kerry, I'll confess that I seldom read the "waiting for results" or "just diagnosed" or "not diagnosed but worried" forums anymore.  I used to spend a good bit of time sifting through those posts, just in case there was someone I could help.

    It's too, too sad, though.  The same anger, the same confusion, the same fearful questions... every week there is a new rush of women into this sorority.  I remember (sadly) that Annie (HeatherBLocklear) dropped off the boards once because she found it too sad to read the same stories over and over and over again. 

    Several of us have family members or friends who are also dealing with BC dx or treatment.  Rock, I can't understand why your mom's sisters cannot get coverage for BRCA testing.  That makes no sense.  Heck, my BRCA testing was paid in full, and my pre-testing risk of a mutation was estimated to be only 5%.  My surgeon said the threshold for insurance coverage was usually a risk of 10% or greater, based on one of the risk-calculator formulas the genetics counselors use.  Do you have those websites?

    I sure can understand why some of us aren't posting as often, and why Kerry (and Eddie?) might drift away.  It's helpful to be able to wrap yourself in a "normal" life, finally.  Rock, I think the trip to SA has done that for you, right?  I do hope we don't cut the ties completely, though.  Of course, we have FB--but I really don't like to discuss my BC fears there, or describe my latest medical adventures.

    This May '08 forum is a safe place, but sometimes it's like an island in the middle of a sea of misery.

    Maybe some ice cream would help.

    otter 

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  • familyroks
    familyroks Member Posts: 575
    edited April 2009

    Eddie - you and I share our diagnosis date.  April 3rd, 2008 was the day my surgeon called me with the news.  Oddly enough, I didn't think about it at all.  I actually forgot.  We spent the day in Seattle at the Pacific Science Center.  Later last evening as I was reading the board, I saw your post and I realized...I had forgotten.  I verbalized my thought outloud "Is that good or bad?".  My wonderful husband said "Thats a good thing." 

    Hugs everyone!

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  • otter
    otter Member Posts: 6,099
    edited April 2009

    Oh, I forgot:  Robin, I cut off my chemo curls.  I went to my hairdresser yesterday and asked her to cut off the curly ends, so the straighter hair was on top.  I admitted that I don't know if I'm going to keep my hair short (probably) or let it grow out to the chin-length bob I've had since my 20's (probably not).

    In any case, she agreed that the curl was on the ends, and the hair shafts were becoming straighter.  She trimmed everything and eliminated the "mullet" I was cultivating in back.  My hair is much shorter now, but it actually looks like a real hairstyle instead of a grow-out.  I'm liking it.

    Big, smooshy hugs to all...

    otter 

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  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited April 2009

    It warms my heart to see all the positive today......negative results , empty lungs, sunshine and bugs in teeth, inpsiring poems, friends helping friends in need and a room full of gals gabbing and just being us.

    Life is good !  

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  • ranD
    ranD Member Posts: 373
    edited April 2009

    Yeah for us!!!!! Hoorah Sue!!!!!!!!!!!!!

    Take that one in the ass cancer...

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  • Gracie713
    Gracie713 Member Posts: 302
    edited April 2009

    Good Morning Ladies!

     It is going to be another beautiful, sunny day here--I hope that everyone else is getting the sunshine too!  I know that it sure makes me feel better!  My lilac bush is full of blooms!  It is a special bush because I actually transplanted it a few years ago from a sprout out of a friends yard--really surprised it has done so well, since I do not have a green thumb at all.  So it is my baby.  Supposed to have a cold spell tomorrow and DH has said that he will cover it for me so we don't loose the blooms.

    Karin-I really enjoyed talking to you yesterday.  I told DH that I told you about his "tracking device" thought and he had a good laugh.  He has a wonderful sense of humor and his goal each day is to make me laugh--which he does!  

    Adding my sentiment to the others--I am so glad (and very thankful) that I have all of you as a part of my life!  I know that getting through the past year would have been much more difficult without each and every one of you.  

    Robin-I know what you mean about the BRCA--mine was negative which kinda shocked my docs, due to my extensive family history.  I told my surgeon when we were discussing the BM that I may be neg for 1 & 2, but who knows about the genes that they haven't identified yet--there has to be something somewhere, too much cancer in my family for there not to be. 

    Feeling pretty good!  Tired of packing these drains around, but I keep telling myself, just a couple more days.  I am glad that I got a post mast camisole because it has made managing the drains easier. 

    Sue--YEAH on the negative results!  (I am hoping that this will be the trend this week and my path results are all neg. too!)

    Randie-It makes me very happy that you are feeling better.  Love the "Mom's mini vacations".  You can always make me smile!

    Hoping that everyone is enjoying this wonderful Sunday!!

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  • rock
    rock Member Posts: 1,486
    edited April 2009

    Quickie to clarify:  Paying for BRCA results when someone has breast cancer I understand.

    I'm trying to figure out why my aunts and cousins (who do not have breast cancer) are claiming insurance won't cover their BRCA results given that the mutation is in the family and why at least some of them are being charged thousands rather than hundreds of dollars, since we know our specific type of BRCA2 mutation.

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  • Sable
    Sable Member Posts: 738
    edited April 2009

    Home again Home again. I feel renewed and really DAT with a bunch of sore muscles mixed in. It's a good sore though.

    Sue, I JUST got your message on the answering machine. I feel bad I wasn't here to get it and post it for you. We left to go out of town the next morning after we chatted and we just stepped back in the door. Sorry sweetie :O(

    Well I'm off to get the laundry down and a nice soak in the shower. I whooped.

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