Starting Chemo May 2008
Comments
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Sue ::::HUGS::::
Hope everyone has a great April FOol's Day!!!
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yesterday was annoying.
Blood draw, one poke but she had to dig around.... then Docs appt... I got the "parent" Doc, not the woman I usually get. I asked him how the bloodwork was.. he said " I don't need your Blood that is only during chemo"... I said then why do you order lab work appt every 9 weeks when I see one of the Docs on the team? He said " oh some of the Docs do that by routine, but we don't need it"
What I should have said, but didn't...
soooo... idiot face... in a public health care system with limited resources you are telling me that I have had blood drawn every 9 weeks for 6 months or so for no reason....???
I thought they drew blood to look at other things, liver? feck I dunno! I am not a freakin' doctor... but I soooooo love having my blood drawn and wasting nurses/ hospital time and money...
So, I got Herceptin and she used one poke, and dug around like a nut and now I have a huge bruise! and she asked about the port.. I think I am going to print up the story of my idiot Doc and the port story and carry copies to every appointment.. and wear a button that says.. ask me about my port and see what happens next... WHACK!!!!!
She asked about which side she is using I said the right( my non surgery side) and told her no one touches the left ever after what happened with my flu shot... and she argued that the flushot would not aggrevate my lymph area etc... I wanted to WHACK her again and ask how her SNB site was doing...
So, all in all an annoying day.
As far as the Onco nurse(not the chemo nurse with 2 shovels to the head) thought and since the Doc said I can wait another 3 months to get the next heart test... I guess my heart is ok ... which honestly.. I wish I had been given a call about. 4 months of worrying... and the only reason I know my last results from Feb is that I called to ask ( which as u know also told me that my Jan score of 49 was re- evaulated to a 50)
I wonder how many patients a doc gets.... I have 1200 customers on my mailing list and way more that are not on the list and I know many of them by name.. and most of them by product faves....
Anyway..Today I am thankful Gracie is ok... and thinking about Sue and how a great day can be ruined by a death in the family. Glad u are retiring... sorry u can't have tomorrow as a lie in bed forever/ do whatever you feel like day. Glad Jen has good tests. Who knew Otter spoke French
and want to let everyone know curly hair goes on and on it spirals on forever... ;)x2I hope, hope hope that Kristy goes to see Sue after the surgery... and that this month sometime I get to meet Linda and maybe Jen... I will keep u posted... not forgetting anyone.. just not caught up yet...
Love to all. back to work, blogging, tweeting etc..
xoN
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My bone density test showed some loss from 3 years ago although my numbers are still within normal range- so the Gynecologist said dont add anything at this point (like another med) just watch it - BUT I am taking it into my own hands and signe dup for 10 sessions with a trainer at our local health club- talked to him this morning reviewing the past year and what Ive been through, what Im doing currently and said I wanted to concentrate on strength training etc specificlaly to address bone density loss current and future with hysterectomy and femara- I starte FRIDAY! I already know the trainer - he works with my softball daughter- so that will be nice - hoping this will keep the menopause and femara from becoming a nightmare.
Doc said the current loss is probably due to chemo and rads and everything else added together since I actually walked all through chemo- not in danger yet and sure dont want to go there!
Kristy
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Well, you talk about mixed emotions. I walked through the radar room last thing today and hugged or shook hands with all the controllers. As I was leaving I turned around and said, "Bye!" and they gave me a smattering of applause and a lot of "fine job"s and "good for you"s....and I cried like a girl. It totally caught me by surprise-I guess I didn't even think about it. I didn't expect it to be sad!!!! But I guess it makes sense, that place was a huge part of my life, i worked there for sixteen years...
Then I get home and my dh wants to find this certain picture, so we end up looking through boxes of pictures with lots of sweet, sweet pictures of my beautiful grown babies when they were little and I end up a sobbing mess on the couch. Tamoxifen? Menopause? Retirement?!?
It's been an overwhelming day.
Love all of you. Thanks again for listening again. Noelle, sorry your medical team was idiotic today. WHACK away, my friend.
RanD, how you doing?
Kristy, I'll send you a PM.
Roxi, thanks.
Thanks for all the wishes.
Rock, you okay?
Sue
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Sue - your emotions are normal for the day let alone add in tamox and menopause. I left my job about a year and a half ago and I was 2 months shy of 20 years. I was glad to be leaving, but was sad to be leaving the people behind. Throw in the pictures and we all understand - that's just asking for tears.
Roc - I read about your friend on your blog. I'm so sorry - warm thoughts coming your way.
Kristy - let us know how the trainer goes. That sounds like a nice arrangement.
Noelle - have things settled down today? Sorry about your difficulties. That stinks when you can't count on your medical team to know what is going on.
Happy Thursday tomorrow - Julie
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Sue - Congratulations on your retirement!! I nearly teared up reading about the applause and "nice job" comments from your friends and peers. I could feel the respect of your peers as you described the situation. Very cool and congrats again to you. Sorry to hear the news of your cousin.
Gracie - Glad to hear that the surgery went well. Rest my dear and prayers to you!
Jen, thanks for keeping us informed on Grace, thrilled to hear that your results are great!
The weekend with my brother's sick family has caught up to me. I officially have the crud. Actually it feels like an infection in the lungs which they warned that I was at risk of getting on prednisone. My pulmonary doc is on vacation so the onc gave me an antibiotic. Hoping that works. In the middle of a huge RFP response and super busy . . .but thankful to have a job.
Linda -scarring is preferred over BOOP.
I have downloaded all the songs - even the Kermit song (found it)! I will compile this weekend and get it out so (most) will have it before our group anniversary date of April 18th.
Love to all!
Jean
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Sue - What a day!! Who wouldn't cry?! So sorry about your cousin, too.
Noelle - And you, too! What a day, but for very different reasons!! Need an extra shovel? I think you may have used all yours up! Geeeeeeeez.
Jean - Sorry about the crud - had it last week. Yuck. But can't wait to hear "our" CD!! Thanks for taking that on!
Rock - Looks like I'm going to have to check out your blog...[edited to add] Oh, wow. Big hugs to you...
Got my dh good with an April Fool's joke tonight. He's been painting the house and I told him the girls got into the paint and splattered it all over the driveway (it's pavers) - he was at work on the phone, but I could hear him just about keel over! "Hurry up and spray it off!" I couldn't look at Katie while I was on the phone because she was laughing too hard! They got a kick out of tricking their dad!
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Morning Ladies!
I am home now and feeling pretty good. (As long as I don't get up & down a lot!) I was really anxious to get out of the hospital--there were 12 people in isolation and I couldn't get out of there fast enough. I have 4 drains and go back to see the surgeon on Tues, so hopefully they will get removed then. Will also have pathology results back by then too. The nurses were really good about keeping the pain under control, alternating morphine and vicodin every 3 hours!
Jen-It was good getting to talk to you! I was pretty drugged-they were giving me dilaudid post-op. I had never had dilaudid before and it worked wonders.
Sue--You are retired now!! Sending prayers your way.
Kerry-I will be praying for little Callum. It really breaks my heart to hear about a child with cancer-it is just so unfair.
A big thank you to all for the prayers and healing thoughts. I love you all so much and you were all with me the whole time! Time to lay down now. I will check back here later.
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Welcome home Gracie- take care of yourself and remember to do all those exercises for your arms- they really do help! Drains were a pain but not nearly as bad as I expected - reminded me of when the kids had colds as babies and you had to use that nasal syringe thing! Get some rest and you will feel better soon!
Kristy
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Noelle, sucky cavalier patient care like that is what makes me afraid to go to an oncologist here. That BLOWS.
Cris: I loved the april fools story. When I was a kid, my grampa would call and use this little old lady voice and ask us if our refrigerator was running. And when we said "yes" he woudl say "You better go catch it!" I don't know how many times he fooled us with that. My little sis and I were not the brightest bulbs in the box.
Gracie, how are you holding up? I hope they don't find too much "interesting" stuff going on in your tissue!
Kristy: Go, YOU and the gym thing. And Jean, you are bearing up really well with the whole prednisone thing. Boy, but that is a load to bear.
I've read every post but I have them all mixed up, now. Sue -- sending you a hug for everything. For the death of a relative, for retirement, for baby pictures, for everything.
There is something though, about a last time when you know it will be a last time. It is so very hard. At the same time, there is also something very hard about last times that we didn't realize were last times. My last period. The last time I would have long, wavy brown hair. The last time I stayed up all night drinking and smoking with friends. My last time of being an unradiated person. And yeah, the last time you see a friend right before you leave the country and you say "I am definitely going to see you play jazz piano when I get back" not realizing that he will have a heart attack and die even though he was very young and in good health.
I love the butterfly card. It could not have come at a better time.
xoxox
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Too many things to comment on but I don't have the time right now. Just know you all are in my thoughts.
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Next to last Herceptin is tomorrow- friend had a mastectomy today and is headed into chemo and rads (known lymph node involvement)- she has a DD that plays softball with my DD- I am utterly floored by how much it has upset me to be trying to help a friend through this journey.
Kristy
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I went to my PCP today for a medical clearance for my bilateral DIEP on April 15th. My PCP is very thorough, so i knew it wouldn't be a fly-by, but a real physical. My EKG showed some inverted T-waves, which I have always had, but they ordered a stress test anyway. I figured, what tthe heck, I'm 50, it won't hurt to have the test. But then, and keep in mind this is the first day of my retirement, she saw something on the chest Xray. She sent me for an urgent CT scan of my chest, and I get the results tomorrow. I am really really scared. I asked her if it looks like a lung met and she said no, but that she was just being extra-cautious. But on the authorization form that I carried to the imaging center, it said, "Left upper field shows small mass." This is right where my cancer was. And I have to fly to Tennessee tomorrow morning for my cousin's funeral, so there is the possibility that I will get crappy results and be a thousand miles from my husband, who has to stay here and work. I really want to stay home now but i feel I am needed there, I don't know what to do.
Rock, sorry about your friend. Gracie, rest and rest and exercise a little and then rest again.
I love you all. Please pray for me tonight, I've got the crazy monkeys in my head.
Love,
Sue
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Like Karin said... so many things to comment on. You are all in my prayers ladies.
Been working like crazy all week busy busy busy, then today BLAM! out of work till further notice. sigh* Only good thing is that we are heading to my mom's for the weekend and having easter a tad early. Dad is gassing up the 4 wheeler for me to get my mud therapy in lol.
Hang in there sue! XX
squishes for all, Jen
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Dammit dammit dammit! Sue, I totally understand your fears. My thoughts are all on you right now.
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Love you Sue... we got ya.
Don't go to the funeral if you can't or go and get on the first plane home if you have to....
Prayers and good thoughts at this end.
xoN
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Sue - you go to the funeral and let us tame the crazy monkeys for you. Praying for your family and for a safe trip. Just think of the new skills we've gained by having bc: shovel wielder, monkey tamer. If I ever go back to work, I can really jazz up my resume LOL.
Jen - sorry about the news at work. It is so sad what is happening to so many good people. Try to enjoy your mud therapy. That sounds like fun.
Graci - so glad you felt like posting. We've been thinking about you. I'm so glad you got along so well. Just rest and take it easy.
And Karin - we are here for you when you get the time. Are sending prayers your way, too.
Cris - loved the April Fool's Day joke on hubby. My Katie told me she got an F on a math test. Math is a sore subject at our house for both girls so she had me going because I would have believed it. Riley's (age 10) theory of math is that her answers are right - they just aren't asking the right question to go with them. I feel like we are playing our own warped version of Jeopardy. Last month she missed 5 out of 8 questions on a quiz which was also an F. She would have done better if they asked more questions - oblivious to how many she missed - they just didn't ask enough. Where are my education advisors here?
Hugs to all - Julie
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Anyone ever play in google maps??? Some addys you type in will come up with a street view of the house.... mine is one of them. Pic is 2+ years old though.
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This latest batch of posts is really, really sucky. Where to start?
Jean caught the crud from relatives; Gracie is managing 4 drains plus the usual post-op hassles. Hugs to both of you.
rock lost a dear friend whose sudden death is going to haunt her for awhile. (((((rock)))))
Sue, who should be leaping up and down with joy at her first full day of retirement, is instead headed for her cousin's funeral in Tennessee ... and is waiting for news about a mysterious "mass" on her chest radiograph. Shite. (There are not enough curse words in my vocabulary.) What Noelle said. Oh, and those CT results will be FINE. It's just scar tissue. SCAR tissue.
Jen, "out of work till further notice"??? Does that mean what I think it means??? I hope the mud therapy helps.
And I can't even stay here tonight and hover around and pour everyone some hot chocolate and listen to the thunder with you and hold your hand(s). I will check back tomorrow after lunch, though.
I could end up being awake all night. I would be awake for sure, if I hadn't done half the driving on the trip home from northwest Arkansas today, in pouring-down rain. I was lucky enough to draw the 100 miles that included Memphis and the 100 miles that included downtown Birmingham at rush hour. <sigh>
Big, squishy hugs to everyone...
otter
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Sue. Oh, Sue. We're holding our breath for you. We're squeezing your hand. We're patting your arm. And one of us is sitting on her couch blubbering again.
And Jen? WHAT?!. How long is it looking? (Nooooo, not you.)
(Julie, I like the way you say things.)
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Sue. What The Fuck. This is mad (as Otter said). Scar tissue? Should be called Scare Tissue. I am totally fecking OVER health issues. And Life issues, for that matter. Every person on this board has suffered enough. That's official. Sue, Jen..Jackie..Rock..ALL of you...Is there something in the stars???? I have had a hectic, crap week. I am busy as hell at work, and then the boss says I have to pack up my office by Easter, because the building is being redeveloped. Took a deep breath and thought..I've done cancer..I can do packing. THEN he tells me I have to be packed by TODAY. We had a massive and magnificent thunderstorm, which is all very well but how do you move stuff when it is BUCKETING??? Then at 3.30 I was able to get an appt for 4.30.with the physio to look at a tight hammy and a sore shoulder. At 5pm the ditz in reception told me to 'Come through', and for 15 mins I perched myself on the edge of a grimy bench, looking at scuffed walls and, I kid you not, picking MAN HAIRS off the sus-looking sheet on the bench. I had a quick consult with the physio, was reduced to my bra and undies and left for another 15 mins with the acupuncture needles in my shoulder and hammy. THEN Ditz-Girl came in and said, "I'm takin out ya needles", pulled them out and literally plonked a hot-pack on my back, and said, "There ya go." I lay there for a further 15 mins..despite the hot-pack I was freezing cold (still in my undies on the grimy man-haired bench). THEN she came back and told me I could get dressed and go. I asked her if I still had needles in my hamstring and she laughed, hahahahahah, and said, "Oh! Blind as a bat. Sorry about that." I left the building two hours after my scheduled appointment, frozen stiff and hating my life. WHO THE FECK are these people?????? Jen, I am so glad your Dad is getting the bike ready for you. It made me teary to think of a Dad looking after his girl (in the way that mine would.) And Sue, I blubbered like girl to think of you on your last day...it's REAL! You are free. On much happier notes, today at school a big, plain boy about 10 years old was lined up waiting when he saw me (for the first time since last year), and his face was just...incredulous. He told me my hair looks "AWESOME!!!! It's just AWESOME!!!!". Then one of my Year 9 girls stopped dead in her tracks and said, "OMG you've got beautiful skin". I got a bit teary afterwards. I've been feeling pretty shite for a while..but then these little 5 minute miracles crop up...Tonight I've got a completely psycho ginger tom-kitten hard-core harrassing all of us, especially my big cat. It's funny enough to win me prizes on telly. No video-camera..sigh..Noelle..I just don't know what to say except...summer's coming and...your future is in your understanding of curly hair. XXXX I thought the sleeping tablets might be the answer to my (previously sleep-deprived) flatness but I think I'm going to call in the anti-D big guns. Any advice, sisters? XXX
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I just want to say: no. fecking. way. No to Sue's x-ray - because even when the ct comes back with an utterly benign finding, it's way too much. No to layoffs. No to friends dying. No to sleepless nights. And no to ditzy acupuncturists and man hairs (unless they're from men we know and like).
Yes to post-op healing (hugs, Jackie) and to a successful course of prednisone and no BOOP(hugs, Jean).
Sue, what you wrote (was it only two days ago?) about last times really shook me up, because it's so true. Like Rock, I found myself thinking of all my "last times," the ones I knew and marked, and the ones that I only realized later, whether gradually or suddenly.
Linda
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If ya'll suddenly awake with bugs in your teeth, they are from me...... I'll be taking each of you on mud therapy with me. Hold on tight, I like to go fast!!!!!!!!!!!!!!!
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Thtew! Phtew! (That's otter, spitting out the bugs.) Faster, Jen--faster!
Hugs renewed, all around: ((((((hugs))))))
otter
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Jen when i think of mud therapy, i picture a spa tub filled with the mud.....but yours sounds like way more fun . Keep riding till you can't ride no more and let the wind blow all the bad stuff away and hopefully the "no work until further notice" will be a short holiday and you'll be back before you know it !
And to all the other suckiness thats happening........ sending one big hug to wrap around everyone, as there is comfort and safety in numbers !
Sue I hope we were able to whack all the monkeys in your mind, and you can have some peace on this very difficult day .
I'm just hoping today is a better day for everyone.......you are all in my thoughts
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Oh, Oh I get to ride next - don't care about the bugs. Angels - maybe Jen can do both kinds of mud therapy - gets covered in mud while riding in mud = twice the fun.
Hugs all around from here, too!
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*sigh* *grrrr* whatever!
N
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Finished herceptin- only one more to go on April 24- spent two hours trying to get over diarrhea that woke me up at 4 AM so the nurses wouldnt postpone my treatment- I felt crummy the whole time but I got through it and got Connie for a nurse- very quiet and sweet and got the IV on first try
Kristy- dont know why these letters got big and too tired to figure it out!
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Kristy....yahoo on getting thru your herceptin, with only one more to go !
I hope you feel better soon,and things settle down with the digestive system.... have a good rest and drink lots of water.
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Julie-thank you for the card. I have it here next to me!
Rock-So sorry to hear about your friend. Sending lots of love your way.
Sue-You are supposed to be celebrating retirement and new foobs--not having to worry about this crap again. Been thinking about you a lot!
Kristy-Yeah!!! Only one more to go!
Jen--Hope that you have fun 'muddin' this weekend. Haven't done that in years-in fact, it was one of the last things my little brother & I did together. The faster, the better!
Love to all !!!!!
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