Starting Chemo May 2008

Thinking of you, Jen.  May your IV go smoothly, and may your scan be quick and boring.  (I'm imagining you rocking out to your tunes inside that tube.  What's on the playlist??)

Cris, how did your sleeve fitting go?  And wearing it to work?  I've also been having arm issues for the last week or so.  No swelling, at least not that I can see (maybe a little puffiness in my forearm, but only when I'm at my most paranoid, and only when I squint), but a lot of pain and tightness and a marked reduction in range of motion.  It started the weekend before last, when every potential LE-aggravating factor converged: air travel, brutal heat, inadequate hydration (from walking around in said brutal heat because, heck, I was in New York and had places to go) and, to top it off, an injury (tripped and skidded on trail while running, skinning my elbow).  I've had brief episodes of painful tightness before, but not to this extent.  So, this week I broke down and started wearing my sleeve to work (I got it to wear when I fly, as a preventive measure).  I shared your reluctance to show up at work sporting a $^%$* compression sleeve, which is a little odd, since I was very open all through my diagnosis and treatment.  I think it's the whole thing of wanting to put this crap behind me, and resisting like hell when reminders resurface.  The kind of good news is that my arm is much, much better these last few days . . . tightness mostly gone, range of motion mostly back.  The kind of bad news is, since the sleeve seems to have helped, it seems even more likely to me that this is in fact LE-related.

Which means my next stop on the BC merry-go-round will be the physical therapist who did a baseline assessment of my arm last year.  (But probably not for another week or two.  I've being juvenile and procrastinating about making an appointment.  I'm seeing the onc next week anyway, will talk with him about it and make the PT appointment after that.) 

On a happier note (because life goes on, even with a balky arm): I ran a 10-mile race last Saturday.  I didn't run it fast, but I ran at a nice, even pace, and even picked it up for the last 4 few miles.    Jean, if you're looking for a fun race in the midwest, think about doing Crim in Flint sometime.  Flint isn't exactly a garden spot, I know, but it's a GREAT event; the way the community turns out is inspiring, and it always attracts some elite runners (Joan Benoit Samuelson was there this year!) in addition to the masses.  Plus, Flint isn't all that far from scenic northern Michigan.

Linda

Sue - Hope it all goes well tomorrow and your are as pointy as you are perky! 

Jen - Well...??

Linda - Okay, the sleeve fitting went well and today we reviewed some exercies, although it seems that instinctually I've been doing a lot of them.  I wore it for a couple of hours this afternoon and then had to take it off.  It didn't hurt but I think I have to get used to the sensation.  Also, I told myself "Why wear it when I've been off all week and it doesn't bother me?"  However, as I'm sitting here now, guess what has started to tingle and go numb??  And we're expecting another heat wave this weekend, so there you go.  I know what my fashion statement will be tomorrow.  I haven't worn it to work yet - Monday.  If I can get to my office, it should be okay from there, but yes, I'm sure it's because 1) I'm so done with this and, 2) I made it through all my treatments last year with none of the inmates (at least as far as I know) finding out.  So this feels like walking in with a neon sign.  I'll get over it and I'm glad to hear yours is better now!  I'm convinced that it would have been much worse if this hadn't been my dominant arm.

Overall, I've really enjoyed my week off though.  I could take another 3 or 4 or 10 and still have stuff to do here at home. 

Happy Friday!

Greeting Friends!   Today is a beautiful, sunny, warm late summer day here in Colorado.  A great day for recovering - yesterday I had a tissue expander inserted in preparation for my reconstruction that will hopefully take place by years's end.  This lopsided boobie that I now have is comical but it brings me hope knowing what will eventually be there in it's place. 

Last Sunday DH and I moved DD back to Glenwood Springs, CO for college.  I do miss her but we have quite a lot to keep us busy with me recovering, DH and I in the midst of house rehab (carpet, paint, tile), me starting college courses again (RN-BSN), and myself interviewing for two different positions at the hospital (interventional radiology and out-patient oncology).

Prior to posting my update I read through the previous 3 weeks and have made notes - unfortunately I can't read them very well (could be the Vicodin) so I trust you'll forgive me if they make little sense.

Karin- I didn't see posts from you here but have read a few things on FB.  How's the training going?  Best wishes for a wonderful year in your new position.

Otter - How much longer will you be on the road? I reread the post about the pink pen.  It has been interesting to me how I too shyed aware from BC items but find myself now looking at them in appreciation. 

Gracie - sounds as if you've been putting in a lot of hours at the hospital.  Don't those long shifts do you in?

Adrienne - Seems as if I missed your post.  How are things for you and yours?

Julie - 33 chemo treatments then rads with two busy daughters, a summer where you had little down time and now the school year rat race to run again...I can see why you are run down and that it must be frustrating for you.

Kristy - Amoxil is so much gentler than chemo and the army of drugs that comes with it.  So pleased that you've had a year for good health other than the dental issue.

Sue - cheers to your new headlights! and may your scars be minimal.  The Chrysalis Foundation was aptly named.  I too need the group encouragment of exercise.  Three times a week is just right

Noelle - what a rough summer for you but you are tougher than all these obstacles.  Thank you for the loving effort put into Dana's basket.

Jen - I understand you being selfish with the prospect of an Otter hug, won't even blame it on your headaches. How did your scan go?  Is your son back in school? Tell me about your homemade foob.  With this expander I have to figure out something different.

Jean -  happy one year out!  to you and others.  I admire your determination with your running.  5 miles - a 5km walk kicks my butt.  Your reunion story made me smile

Kerry -  your chooks are laying, your are smelling newly mown grass, meeting new friends with like back ground and booking trips to Thailand!  You are living life in the exact moment.

Mary -  how's your dad and your sis?  Wow - what a summer for your family, Fairest of the Fair and a Champion Tom Turkey.  You are the Qween Mum

Roxi -  so good to learn your bone scan was clear.  Yay for negative on the BRCA.  How are your backaches?

Eddie -  you've traveled a lot this summer also.  Neg BRCA, lower cholesterol, clear colonoscopy?  HipHip Hooray! Did you find out about Randie'sbox?  It took me three time or reading before I understood what a deportation surgery was.

Cris - What sensation do you get with the compression sleeve?  Tell the inmates it has bionic super powers and they best not mess with you.

Dana - I saw on FB you got you goodie basket today!  We all are smiling in our hearts knowing your were pleased!

 Heather - how's your mother?  Did you have your repeat mammo?

Linda - It's been enjoyable reading about your trips this summer and the marathons you've been running.  That is truly impressive!

Ladies - it's been great catching up with you!  Having two weeks off work I'll be poking my head in the door here more often.

Love to all!

Robin

Briefly -- re: swelling. I don't think I have lymphedema. My breast is swollen and the area near my armpit feels tight and gives me a pang from time to time.  But the onco is pretty sure it is from the radiation and not from the removal of the lymph nodes.  And my legs swell like crazy after a flight which my onco thinks is from the Tamoxifen so she is recommending that I lay off the drug for a few days before and after a long flight.

But I do feel for you folks because well, A COMPRESSION BANDAGE SOUNDS LIKE SOMETHING THAT COMPLETELY STINKS.

Sorry for not checking in more often. For some reason, FB is feeling more my speed these days. Also, I think, if I really am honest with myself, that... well, logging on here makes me think of Randie.  And ... see, here I am in an internet cafe trying not to cry. 

(Hey, Sue. "Burma shave!")

love you all.

Glad to see all the good advice.

We are in Oklahoma, as some of you already know.  (Noelle, that was a great rendition of the state song!)   It won't be much longer before we are finally home.  Yes, I like the traveling; but, yes, I am looking forward to being home for awhile.

My recheck appt (mammogram followed by BS appt) was originally scheduled for Sept. 3.  They set it up for me a year ago, when I was there for my 6-month post-surgery mammogram and BS follow-up appt.  We even arranged our vacation/travel schedule so that we would be back home in time for the recheck appt. Then last week I received a phone message saying that the appt had been delayed for 3 weeks because my BS needs to be out of town (actually, out-of-country) for a couple of weeks.  I was feeling glum about that for a few days.  I wanted to get it over with, of course--the sooner, the better; but mostly I was bummed because we could have stayed in the mountains for 3 more weeks if I'd known about the schedule change.  Oh, well.... <sigh>

rock, I see you've returned to S.A. and you're settling back in.  From your FB posts It looked like you were having a hard time figuring out where you'd rather be.  My major professor/doctoral advisor took a sabbatical and spent half a year in Morocco shortly after I finished my dissertation.  (I wonder ... was there a relationship between those events?)  Half a year turned into a year, and that year got extended even farther.  He and his wife became fluent in French and functional in Arabic.  I think he eventually found himself more comfortable there than he was at his home university.

Anyway, I'm just rambling.  I guess I'm feeling unsettled myself, not sure whether I'm supposed to be here or in a campground in Montana or sitting on my deck at home ... or, ON THE BOAT.  Sheesh.  We have too many toys.  Anyone else here trying to simplify her life?

Big hugs all 'round...

otter 

de-port-ta-tion hahahahaha I'll be saying that as my montra next week as I go under. They already think I'm a big dork LOL. The little helper dude today asks me how much I weigh. I looked at him with a straight face and said 125. I thought hubby was gonna fall out of his chair laughing. One can wish ya know ;O)

maybe you can call them about it.... better safe than sorry in case somebody swiped it. man i sure hope not

I will ask...

Today is a good day !.....Celebrating 25th wedding anniversay today and hubby surprised me with a pacific coastal cruise from Vancouver down to Sandiego.   We leave on Sept. 19....can't wait, only not much time to plan the wardrobe   I was even able to hook up mom into respite during that time.

Jen so happy you have a normal head, that made the day even better when i read that !!!!

Hope everyone else is having a good day, will write more when i have time.

Looks like I will start Chemo soon. Just had a double massectomy about a month ago,

 Must make a decision to take out lymph nodes or not, there is a 9% chance of the cancer in there. One was taken out during the masscetomy and showed clear but when it was sent to lab a week later showed the cancer cell.

Just dont know what to do!  What a decision!

I wonder if I have to start Chemo with or without the lymph nodes and is there a certain tpye for stage 1?

Thanks for feedback, it helps so much .

Flacracker,

Odd to be Stage 1 and have lymph nodes impacted. I would get many opinions...not just one or two. This group is mostly through chemo. Feel free to check in and to ask as these women will, likely, have advice, but also check for a group who will start chemo when you do. Know that you will get through it all and come out the other end stronger and healthier. I wish I had had a double and will likely take off number two sometime in the next couple of years. But everyone is different and makes decisions based on science and faith and gut feelings. 

Tomorrow, my cancer bully friend, Dottie....the one you have all heard so much about over the last year is going in because she found an odd "dimple" in her remaining breast. She gets a digital mam and an ultrasound at 8 AM in the morning. I am sure she will be fine, but am worried anyway. All energy to flow to Dottie please. Thanks. 

Rock,

Can't blame your body for wanting to get back in the flow of things....sigh. Love you. Moon cups are cool. Still waiting for Dottie to get in here (at work)...She was scheduled for an 8 AM digital mam and ultrasound.....aaargh. Did not sleep last night. Worry warts wouldn't let me. Damn. Love you all.

WOOOHOOOO yay dottie!!!!!!!!!!!! congrats!

Today was my last herceptin ahhhhhhh! I took in a big sheet cake with the damn ribbon on it lol. And for my 2 main nurses I found a nurses guardian angel pin that had the nicest poem on the front of the box. And the one nurse that I deal with every single time I go, I also got her a candle to go with her pin. Funny thing... she bought me in a boa! So I had to wear it thru the last treatment. I got a pic of all the nurses at the end and they gave me a certificate of completion and a tons of hugs and kisses. One nurse stoood there and cried. I really love these ladies, they have gotten me thru a ton... as you all well know. One step closer to being done. yay! Was I the last one to finish up herceptin??

Rock~ I've read about those cup thingys..... not sure if I could deal with that. I hear they are very messy. Guess you may have to dig out your earrings and use those LOL.

Happy Labor day weekend ladies!!! :O)

Hi, everybody!  otter here!  I mean, otter is home, sweet home.  Sweet home Alabama; etc.

Are we weird, or what?  Who else would be celebrating a deportation?  It's touching, how close we get to our health care folks who've seen us through chemo or rads.  There's a receptionist at my PCP office who is like that. She knows me right away when I call, and whatever I need, she takes care of it--no fussing, no questions asked.  It's done.  She never saw me through chemo, but she did see me bald-bald...

I am reading all your good news about recon and the happy results.  Some days, I wonder whether I should have had recon...  Then I figure, no, I wanted things to be simple.  I think I have some chest wall swelling even now; and I suspect it's low-grade LE like occurs in my forearm occasionally.  If I'd had a (large) lumpectomy & rads, or if I'd gone ahead with the mast but then had recon, there's no reason to think the chest wall swelling wouldn't have developed. (It's mostly on the side of my chest, under where the SNB was done.) The same nodes would have been taken, and that's what's causing the swelling I guess. I figure the swelling would be harder to manage in a boob with a cavity in it, or in a reconstructed one.  Now, I just slip my handy "Swell Spot" in my bra on that side and put my foob on top of it (with some of the stuffing removed); and, voila!  Comfy, really.

Sheesh.  I'm rambling again.  I am trying so hard not to scratch the skeeter bites on my legs.  The skeeters ate me up at the campground in Arkansas.  Didn't even know they were biting me until it was too late.  These itch even worse than chiggar bites.  (We'll see about that.  I have to mow the lawn tomorrow--it has gone to seed; and I have to help dh cut some willows that have grown on our pond banks--a guaranteed way to get chiggars.)

rock, I still have several unopened boxes of "supplies" in my linen closet.  Want me to send 'em to you?  I won't be needing them--haven't, in fact, for more than 6 years.  And, I don't miss it. I finally took all the emergency supplies out of my purse this summer.

Flacracker, you will probably (hopefully) get good advice about an axillary node dissection from your surgeon, and your oncologist should tell you about chemo. There are differences in the types of chemo given to women with "early" versus "advanced" breast cancer.  Yours sounds like it is early-stage, even though you did have cancer cells in one of the nodes.  The question about whether an axillary node dissection (removal of all the nodes) is necessary when there are just one or two cancer cells found in a sentinel node is controversial.  The best thing is to find out what your docs recommend; and then you can come to these boards and ask questions.

Did I say this already?:  My "routine" mammogram and re-check with my surgeon have been moved from Sept. 3 (today) to Sept. 21 because my BS had to be out of town.  I haven't told anybody yet, but I can feel a small, soft, freely movable lump in my good breast.  It's way down in the soft tissue by the fold--I think it's called the inframammary fold--and there is no way they could catch it on a mammogram.  It feels like a lump of fat, or maybe a small lymph node.  I'm not too worried about it, because I'll be seeing my BS in 3 weeks and I can point it out to her.  If she finds anything odd, she will roll in an ultrasound machine and do a quick US right there (followed up by an official US in radiology, if necessary).  I've been trying really hard not to let my mind play that "what if?" game...

Hugs to all of you.  I love you all.  Really, truly.

otter 

Hello Ladies!  We have had a long stretch of beautiful weather and I have been making the most of all of the daylight hours.  Yeah to Eddie & Jen for finally getting that port out (Jen, I believe you are on the 8th)!!! 

Jen - I am thrilled to hear that the scans are clean.  I have also been having headaches lately and I too had a CT scan yesterday . . . . and am now awaiting the results.  I remain hopeful that everything is fine and this was just a precautionary test. I just booked a flight to Columbus in November to visit my college roommate.  Let me know if you would be interested in meeting for coffee.

Linda - Glad to hear the training is going well.  I will look up the Crim Flint and place it on my race list!  When is the marathon?  I just got cleared by the onc to go ahead and run the rock -n- roll marathon in Scottsdale January 17th.  I have some spark back in my legs, but I cannot sustain it for very long.  This should be interesting.

Robin - I went the expander route and it was not bad . . . but it was uncomfortable.  My expander had the capacity to be filled to 300cc & I stopped at 250cc because my chest was so tight.  My PS was awesome in that we would negotiate the amount to be filled each week.  I went in 50cc increments (alternate weeks from chemo), so the change was not a big deal.  Important to note is that I was a 34A (almost A) - so basically I had really small boobs on a really small frame.  The implant feels fantastic - comfortable and natural. 

Off to enjoy the beautiful day!  Love you all!

Jean