Starting Chemo May 2008

Gracie, you can check my company out at www.ellenoire.com.That is me with hair on the home page. Anything in the ellenoire brand is made by me/us in the store. Until 4 years ago I made everything in my mom's basement because me original store was too small. Now I have a bigger store and we hand make/hand pour about 10-15  products, and have over 200 fragrances to custom scent them with.  The store specialty is custom scenting the bath products to the customers specs. My personal specialty is making custom blended perfume. I have one of the most obscure collections of essential oils in the country. Here is a recent article on the wacky thing I do http://www.thespec.com/article/408952

We also have a large section dedicated to curly hair products, a paraben free section, and lot of other fun stuff for skin and hair.  

I  have yet to learn how to make soap- strangely enough. I was hoping to do it this year as my best soapmaker is retiring. 

 How long have you been making things?

  Chemooo everyone! I have to get ready for work. 

 N 

The reason they had to work on the system was that somebody joined/hacked in yesterday morning and was posting hate messages on all the boards multiple times. I saw it going on and backed out hoping they woulnd't have to kill off the whole board.

Wow seems like everyone is doing great this morning, that's fabulous!!!!!!

Noelle..... you're a silly girl! We love having your flair added to our "month". And it's kinda nice to have somebody who knows what to expect coming up. And it brought up something I was thinking about the other day....... Most of you will be done with chemo in a few months, I on the other hand, have a year's worth of herceptin after mine is done.... what am I going to do without you guys??????? I am hoping some of you will still check in from time to time. I think I have become attached. *pout*

linda~ I had hubs check my head.... he said he thinks he sees a few clear hairs but isn't sure. It'll get here when its ready I suppose.

adrienne~ your last chemo is on my bday! good day for all LOL

jean~ mine said to not expect anything till 8 weeks after chemooooo was done then looks at me and says don't hate me and runs for the door. he is such a nut.

 those who play mahjong~ is it the equivalent of americans playing cards? One set of tiles but many different games to play?? I'm dying to get a set but I know I'll be left sitting holding them and nobody to play with.

rock, I am trying to set aside my frustration about moms and think kinder thoughts about mine.  I will send the extra thoughts your way, for your mom.

My mom and I spent all day yesterday wandering the tunnels beneath the Mayo Clinic (in MN), riding elevators, and sitting in uncomfortable waiting-room chairs.  She began the day with two appts in the morning, and ended up with two more added after lunch (the last one at 3:15) plus one more today at 3:45.  I was dog. ass. tired (to borrow a phrase from Sue) by the time we got back to the house.  I ate a quick supper, crashed for a quick nap, and woke up in time to go to be.

My mom can drive to Mayo herself (50 minute drive), park in the ramp, and find the appropriate clinics, but she doesn't listen worth a damn and refuses to take notes.  So, by the time she gets back home, she has forgotten or shut out what the docs have told her.  This necessitates someone else going along to each visit.

Usually my sister accompanies her, because she lives 90 miles away and I live 1,100 miles away.  I happen to be here this week, though, when the appts turned up on the calendar.  My mom's situation is stable, and mostly what we heard yesterday was, "Things are going well."  (She was there to get 2nd opinions on a variety of problems her local medical providers have been ignoring or mismanaging.)

So, I'm gathering some newly minted kind thoughts and sending them your mom's direction.   If she is anything like my mom, just the mention of marijuana would cause her blood pressure to double.  She's not like my mom, though.  When I'm with her, my mom won't let me use the "handicap-accessible" stall in a restroom even if it's the only one that's vacant.  She'll shout, "You can't go in there--it's for handicapped people!"  (Oops.  I wasn't going to tell stories like that.)

Illness in aging parents is so difficult to manage, and to accept.

otter

mmm, I ain't goin' nowhere! I know the value of good friends near and far. I have more non local pals than local ones. I am a sagitarrian with wanderlust and have collected good people in my years of travel. My supposed best friend who lives 5 minutes away has only seen me twice since dx. I am debating as to whether I let it go or have the confrontation..... but that is another story. My true BFF is a native New Yorker who lives at Ludlow and Houston in a wee rent control apartment. 

 Sable-I am starting Herceptin in 2 weeks ! 

 Rock- send mom some magic brownies or some "herbs" for some rasta pasta. I hope she gets better. I'll pray for that. Send her some of that Lance Armstrong ( FRS) drink I told you about. It is great for energy for chemo patients and anyone else and has no stimulants or anything bad in it.

 Oh, I keep meaning to mention this. When your hair starts to grow back it will come back that white clear colour, and will eventually get come colour. The white stuff is like the hair that babies are covered in when they are born. 

 Cheemooo everyone!

 I'll see you on the lawn of the villa with dinner and wine ready for y'all.

I have to work...

Being the boss makes that pretty important I guess.

 ;p 

I would be up for sharing emails/snail mail addys. Especially for cmas cards woohoo! It seems I have way more friends online than I do in real life at this point. Ya'll don't mind if I come to see you in my jammies and that's a plus LOL. If nothing else we can make a "moving on" thread or even keep this one going.

Rock~ prayers and good thoughts for your mom

Otter~ for yours as well sweetie.

Eddie~ where the heck r ya girl??

Pain is mostly gone for me today. I get achy more at night than anything else right now. Think I'm gonna try to get my house clean again the next few days. I even sat and paid some bills. I got a call from my insurance company this morning reminding me to pay my bill.... opps.... I don't think they'll take "I was in a chemo pain/drug stupour for a few days" excuse. Got it sent right out.

My boss calls me last nite and when I answer the phone the tells me that if I don't stop answering the phone so cheery he is gonna tell the big boss (my best friend) that I was faking sick and make me go back to work.  har har har. Boy can I whip up a fake cough in a hurry LOL. I am gonna try to head back for a few days starting next monday. Told him I just don't think my knees are in prime for the basement steps today. He offered to let me ride one of the greatdanes up and down the stairs. At this point the doggies hasn't seen me in a few months and will probably waller me to death as it is. Our office is in their basement of the house..... and I have constant companionship of 2 greatdanes and 5 kitties.... all wanting my attention constantly. So basically I get paid for scritching ears all day. It works for me

Oh, Adrienne. Sweety, I didn't mean to stress us out more than we already are. But I confess, I was thinking of you and me when I posted it! (Sorry to post and run; I was headed, predictably, to a doctor's appointment.)  I SUSPECT (you know, with all my medical training and background -- NOT) that we have not had enough of the Aranesp to hurt us.  It's hard for me to read all the fine print on the drug insert, but it seems that the problems enter into play at the larger doses.)  But it may well be that you do not need a 4th, 5th, or 6th dose, you know?  

I noticed that Otter posted a response to the thread I started -- I'm gonna check out what she thinks.

Adrienne, I am not the huggy-wuggy type but I am giving you a big hug right now.  Partly because I could use one myself!  xoxoo 

Excuse me for awhile folks while I do a little therapeutic raging with Adrienne.

I feel you, sister.  I am still adhering to my "no complaining for 3 days" policy. This is PROTESTING and RAGING, which is different.

1.  From now on, I'm going to always ask for the product insert rather than rely on the summary.  It was a fluke that I asked for it, to be honest.

2.  We should not have to be this knowledgeable. We should trust our doctors to a) be well-informed and b) inform us of the potential risks a drug poses to our health, especially when we have told them that we PREFER to be informed.

3.  The oncos have us by the short hairs.  I know what you mean about not wanting to seem argumentative or like a "problem" patient.  At the same time, I do not want them to assume I will take whatever is thrust at/injected in me.

4. But my biggest beef is with the drug companies. How DARE they try to increase the prescriptions of a product that can jeopardize our lives by increasing the range of HGB levels at which it may be prescribed. SHAME.

I am going to put a hat on my head just so I can take it off for you, Adrienne. Good for you for saying, "Uh, not taking this next time."  (And was it you who also dropped some weight you had been carrying that you had wanted to lose?  Hats off again, for that.  It's just that I suspect you -- like me -- didn't undertake an activity that improves our health just so that the benefits could be offset by a @(#$*7ed drug.) 

You are many, many things, Adrienne. A dummy is definitely not one of them. I'm really glad you pointed this out to the nurse.  And while I'd prefer not to have company in this incident, there is a piece of me that is comforted knowing I'm not alone in my feelings.

I read that NYT article while I was hanging out at the hospital this morning/afternoon and thought of you, Adrienne.  I'm really glad that Rock posted it.  And I'm really glad that you're declining more shots and will be taking this up with your onc.  FYI, if you go to the American Society of Clinical Oncology site, you can find the guidelines that they came up with a while ago (basically, they track with the FDA's new warnings):

[deleted because it was messing up the page format (I knew it was messing with mine, but didn't imagine it was doing it to everyone's . . . so sorry).  Instead, just go to the ASCO site (www.asco.org) and do a bunch of clicking around.  On the lefthand menu, click on "Quality Care and Guidelines," then on "Practice Guidelines," then scroll down to "Clinical Practice Guidelines," then to the "Supportive Care and Quality of Life." The one you want is titled "The Use of Epoetin and Darbepoetin etc.etc."]

Wow, that's a long link . . . hope it works [and doesn't mess up the page].  I think there's still a WIDE variety of practice out there; ASCO guidelines notwithstanding, some doc's are not convinced of the risks, or think the benefits outweigh them.  I hope you're not panicking - it's not like you got a ton of the drug over a long period, or had your Hgb shoot way up - but I'd be pissed, too, for not having the risks discussed so that YOU could make an informed decision about how to manage your anemia.

My chemo today was more exciting than usual.  No pole dancing, unfortunately (not by me, not by anyone).  First I learned that there had been a small change in my pre-meds: instead of Aloxi, they gave me Zofran, and they dropped the Pepcid that had been mixed in with the Benadryl.  Turns out those drugs are more typically given with Taxol, not Taxotere, and they didn't think I needed them.

The nurse said something really interesting.  Not an exact quote, but the essence was, "With a lot of people we wouldn't even mention a change like this, but you always ask about medicines and dosages, so I thought you'd want to know."  Enough said.

Sooo, about halfway through my Taxotere drip, I suddenly start feeling really weird.  Really, really weird.  It's hard to describe the feeling beyond that: the best I can come up with is, a prickly feeling though my limbs and my face, and a general light-headedness.  Later I found out that my chest and neck had turned red as well.

I call for a nurse in a weak little voice - "I think I'm having some kind of reaction" - and a whole phalanx of nurses springs into action.  They immediately stop the infusion.  I'm asked repeatedly if I'm having any trouble breathing (no, or at least I wasn't before you asked . . .), someone checks my oxygen while someone else takes my blood pressure (good thing she stopped before tightening the cuff on my left arm to ask, "is there an arm I should be using?", because I was too out of it to direct her to my right arm unprompted) and someone else gives me a push of hydrocortisone while someone else calls my doctor to come up and should they go ahead and give me another 50 mg of Benadryl. 

(OK, maybe there weren't really that many "someone elses," and it wasn't all going on at the same time, but that's how it seemed.)

That push of Benadryl - the same dose I get in my pre-chemo bag, through a slow drip - really pushed me over the edge.  I was so spacy, I could barely put two words together.  My doctor took forever to come up - he was in the middle of a bone marrow biopsy - which was good, in a way, because it let me recover some semblance of lucidity.  In the meantime, I just practiced deep, calming breathing.  And wished I hadn't picked this particular treatment as a solo flight! 

(Oh, and when a different nurse took my blood pressure a second time, she automatically went for my left arm as well.  This time I was alert enough to redirect her.)

Onc comes, chats with me briefly, shares his theory that maybe changing my pre-chemo meds was not such a good idea after all.  He suggests giving me some Pepcid and then restarting the infusion.  And that's what we did.  I felt a little funny again toward the very end of the drip, but in all honesty, it was hard to tell if it was a real reaction, or just my anxiety-driven imagination.  Same with the red spots on my hands - were they hives, or was the magazine I was reading rubbing against them?  Whatever: the bag of Taxotere was finally empty, I was still breathing, and the hives (or whatever they were) faded away by the time the nurse disconnected the IV and flushed my port.

Whew.  Made it through T#3.  If things follow their usual course, I'll feel great tomorrow, pretty good over the weekend, and the aches will start to set in late Monday. 

(Oh, and my Hgb took another dive - there seems to be a weird relationship between Taxotere and my red blood cells, with a double-trough pattern . . . an initial drop, then a recovery, and then an even sharper drop.  It was 13.3 last Thursday, but instead of continuing to rise, it fell all the way back down to 11.2.)

This is too long already, but sending good thoughts to Otter and Rock's mothers (and to Otter and Rock) won't make it too much longer, will it?

Linda

Wow Linda that is scary. I'm glad you are ok. Next time take a buddy with you again please.

I've been watching the full series of sex and the city back to back since I have been sick. I've seen it all before on HBO but I thought it'd be more fun this way. Just got to the last season. The one were one of the main characters got BC. I didn't think I would be so emotional over it. This time I understood what they were talking about and kept crying thru it. I called my gf to tell her I've been sniffling thru it and I guess when she watched it before she loaned it to me... she cried thru the last season as well because of me. Never told me till tonight. Amazing how life changes on a dime. I may have to go get the pink wig samantha wore in one show now LOL

yup I did. Loved that show when it was on. It was the only reason we had HBO for so long. Canceled it right after the series finale.

Eddie~glad to hear you are ok. I was beginning to worry about you. I was willing to start trying what you were taking, vicodin only took off the edge for me. I even was looking up bone pain treatments trying to find anything that would work..... I kept seeing "talk to your doctor"... ya ya ya been there done that. I've had the wrist pain before myself. I got a wrist brace and wore it dily for a few days and made sure that I wasn't curling my wirst under when I slept. It straightened up in about 2 weeks. Lots of stretching it out as well.

Whoa, Linda, that link took the page completely off the right-hand side of my computer screen and into the next county.  Any way to shorten it?  It's a great link to supplement the issue rock brought up.

I agree that sometimes our onco's don't seem to keep up with the news.  Either that, or they are too slow to change because they don't trust the newer information.  That's the main reason why I fired my first onco--he would not discuss anything with me.  

For those of you on Taxotere--it's really weird stuff.  I got Taxotere along with Cytoxan as my primary chemo regimen.  In my premeds, I was given Zofran plus dexamethasone, followed by a histamine blocker.  They used Zyrtec (an H1 blocker) for infusions #1 and 2, but changed to Zantac (like Pepcid, an H2 blocker) for infusions #3 & 4.  I developed hives after tx #2, so that might have been the reason for the change in antihistamine premed.

Rock, is your mom eating yet?   Your description of her problem reminds me a lot of what my dh's mom went through a couple of years ago.  She developed a head cold, lost her appetite, stopped eating ... and the cold became bronchitis which became pneumonia.  That depressed her appetite even more, and she became very weak.  She finally went to the doctor because of her cough, and she collapsed at the doctor's office.  We knew nothing about any of this until we got a call from a neighbor that she had been admitted to the hospital with weakness and dehydration.  It was so frustrating--she stopped eating and drinking because she wasn't hungry or thirsty, and that made her even sicker than she would have been.

I spent another half-day at the Mayo Clinic with my mom today.  I think I could get there blindfolded now.  I was impressed with the receptionists, all of whom were so darn cheerful and friendly.  We should be finished with doctor visits for awhile (for her, anyway).  My next recheck is Aug. 18th.  I have the pleasure of a 6-month post-surgery mammogram and follow-up with my surgeon, plus a 3-month post-chemo follow-up with my onco.  Somewhere in there, I'm going to bring up the under-arm swelling that is worrying me, and hopefully get a referral to the PT/LE therapist I saw in
April.

Gotta go.  Hugs to all of you (not too tight, if your bones and muscles hurt)...

otter 

Wow, back formt he sunny shores of Italy! had 2 pages to catch up to!  We sure are a writing bunch.

rock, thanks for the head up, my hemo dropped to 10.4, but the LPN (no onc today0 told me that they won't give me anything unless I get light headed and heart palps, he said at my age, i should be able to handle a low count.  I did an experiment these past 2 weeks, I deliberately didn't eat my normal iron high diet to see if the count would drop, and it did.  So this week beef and protein shakes and chocolate chex are waht's for b, l and dinner! Rock, your mom is in my thoughts and prayers as well. With all the steroids in me, you all have given me lots to pray thru tonight!

Otter thoughts and prayers to you and mom and to all the moms out there!

Eddie and Sable, sorry about the pain, wish we could wave our magic bc se wand and take us all back to pain free bodies, wow there's an invention

Sable: I am now hooked on the Rome series.  I am halfway thru the 2(last) season.  Warning, this show is EXTREMELY sexually and violently graphic.  Definitely no kids around for this one.

First tx went fine, considering that I showed up at 11 and din;t start til 1:15. Why?  Blood work screwup my platelet count came back without a number, just a note that said they clumped.  Not good enough for infusion room, SO they had to call upstairs, wait for the callback and then run another panel.  Then the lab closed for lunch! After the results, which this time read, normal, clumping, they had to call around again because they onc hadn't written new treatment orders and they still wanted a number.  When the LPN came down, he tried to tell them that they should clump and that was a good thing and why the hell had they run another test, so it was fun.

Anyway, no adverse effect so I am cleared for round 2 in 2 weeks and hopefully by round 3 they can reduce the steroid amount so I feel normal.  Right now I am rally tired, but my brain won't shut down enough to sleep.

Even though I had enough benedryl to pout a horse out, I ended up with a chatty neighbor who talked for a whole freaking 3 hours and never stopped.  The nurses didn't put the curtaim across because they were fiddling with her lines for an hour and just forgot.  Mind you I was watching a movie and had headphones on an she was still talking.  Even with my eyes closed she kept it up. I felt bad, bu tit wasn;t her first treatment, it was her 12th and she had her brother with her and I was so looking to 5 hours of quiet.   I felt like the passengers that were on Airplane and killed themselves rather than listen to Robert Hayes.   She finally left at 5, and I had a nice quiet 1 1/2 hours til I left.  So after a lone 9 hours ther, I was done..ahhhhhhhhh....CHEMOOOOOOOO

Bright side is that Taxol and I get along, right?????

randie

Linda, I had a similar albeit smaller reaction in my first Taxol. BF was in the caf getting lunch and came up to find 8 zillion nurses swooping and diving around me.

Rock and Otter- peace and good health for your mommies ASAP!

In the SITC movie I cheered when Cynthia Nixon (Miranda) had a full frontal boob scene! Cynthia was very private about her BC until it was all over and I was sooo excited to see that she was cool with the nudity! There were a lot of lonely years when my kid was little and I was single and building my business alone that the SITC girls were my bestest friends. The movie was like a college reunion for me-I missed them all so much!

Yesterday an old pal who swoops in rarely but at perfect times into my store to say hi popped in to chat.I can always count on her cynisism and understanding of how much I hate the dumb crap people say to me at the store. So, in your best overly nasal Roseanne Rosanna Danna Danna voice say: "YOU LOOK GREAT!!!!! YOU MUST BE ALL CURED!!!!!" and you'll get the kinda stuff she says to make me laugh. 

 I met another friend who just finished a lumpectomy and rads. She is my age, her mom had BC and asked to have a mammo (they do not routinely do them here until you are 50)and they found a teeny lump, and got it dealt with really early. She feels great, and is prepping for a 25 km race in October. She is my inspiration to keep my goal of doing the mini tri ( an hour-ish to complete) at the end of August. I am fully prepared not to make the goal if I am still too tired, but I am gonna try.

My legs are still really tired this week, could be from being back at the store a bit more, not sure. I am going to try and swim or go for nordic walk in the trails today. My fingetips are a mess, and the nails are starting to separate from the nail beds. I wonder if the herceptin will do them in for good. 

 DRUG COMPANIES SUCK! Rock, thanks for that info

 Chris, I get funny shooting pains in my scar all the time, it is likely the neupagen/ neulasta(cannot recall if you take it) or possibly nerve endings trying to grow back. I make the doc  check my scar a lot because it freaks me out. 

 Chemooo!

 Noelle  

Only got a sec. But I have to post this.

Karin -- I have to tell you this.  I was gonna just PM you, but it's too good not to share. I just got off the phone with "Y", who was my gene counselor during the process of finding out I am BRCA2+.   I had posted Karin's "pole dance" video to my blog. I had given the blog address to my gene counselor "Y" some time ago, not ever expecting her to check it out.

Well, it turns out that Y reads my blog which is pretty darned cool in and of itself, but cooler still: She mentioned at the end of our conversation that she really enjoyed the pole dance video that I had posted. Moreover, she said that it had been a rough week (or couple weeks?) in her office because they were getting a lot of positive results, for BRCA and other mutations. Delivering the news was really taking a toll on their spirits.  So she emailed the pole dance video to her colleagues and they all got a much-needed laugh/some comic relief.

Isn't that cool? First, can I just say that it never occurred to me how hard it must be to tell someone as part of your job that they have a gene mutation. Second, and the reason for the post, I love it that you, Karin, made a difference in people's lives that you didn't even know.  I love it when that happens.  (I gave Y an exclusive and told her about K and all of us and our planned pole dances on the last day of chemo!)

(Sue? Where are you, sweety?) Sending out lots of love to all of you.

PS Thanks for keeping my mom in your thoughts. And yes, Otter, Mom's gone down a similar path as your MIL, tho she did get med tx a bit earlier. She's trying her best to get well and describes Dad as an "attentive nurse" which is a relief. I THINK her fever may have broken.  

Happy Friday Girlfriends,

Taxotere #2 went well yesterday, always hate that first 5- 10 minutes when you are waiting for a reaction to happen but nothing did, clean sailing after that. Wore my ice gloves for the hands again and sucked on ice chips this time so will be interested to see if that will help my mouth as i didn't do it last time. It was a fun morning in the room everyone was in good spirits made it more bearable!   Haven't had a problem with the decradon until last night .....brain wouldn't shut off and eyes wouldn't close was still looking at the clock at 3:30 am, I think a Friday afternoon siesta will be in order !  SE last time didn't kick in until about day 4 so have a few more good days to go.

Our 12 year old daughter has been away this week at the Junior Olympics in Detroit, she is a competitive jump roper and made it through the provincial and national competitions in Canada to get there. (how can you tell i'm a proud Mama!)  She will be home on Sunday , can't wait. Its been hard not being able to go with her to her competitions this year ...I hadn't missed any up to now.  Soon she won't want me there anymore, so i think that has been the most dissapointing through all this is the missing out on some of her life.  But putting it into prospective...I'm doing this so I won't be missing out on her LIFE!  And my two older boys. 

Hope everyone does well today with their aches and pains and you can enojoy the weekend, have a good one..cheers