Starting Chemo April 2009

Titan - are you back from your vacation? I read your post and unfortunately, I don't understand a thing you wrote! (LOL)! I don't really understand anything about football. When I was growing up in the UK, my family used to love it, well, I think that is Soccer here. Anyway, what I do love here, is how it is about family time and I think that is great. My kids are really into it here so I encourage that and am happy to sit with them and watch even if I don't fully get it.

I am feeling very tired at the moment. The sudden change in weather has made me feel like I want to stay in bed longer in the mornings. I cannot believe how hot it was last week and now it is actually cold in the mornings! I am sleeping a little better now that it isn't quite so hot out, although my body temperature still gets very hot. I do worry though, that this is as good as it gets and that I won't ever stop being tired. I am trying hard to eat carefully and excercise regularly and that is making me feel better, even if it isn't shifting the extra weight.

I have decided though, to have the Brazilian hair treatment on my hair. I have made an appt in a couple of weeks. I just cannot take the curls and frizz - especially with the rainy weather. I am a little nervous, but if it comes out well, I will post a photo for you to see.

I have my DEXA Scan tomorrow morning and depending on the results, we will see if I need to start taking a weekly pill for my bones.

Hope you are all doing well today! Hugs to you all, Judy x

I go for my 3 month check up to the onc tomorrow.  I will be seeing his nurse practitioner which is a relief because I like her SO MUCH better than him.  I will get weighed - and am already nervous and tense about that. I have been (as you know) working my A$$ off since June and have lost some weight and burned fat/built muscle but am not sure what the scale will show.  I am easily wearing a size 10 now and people can't believe the onc gives me so much crap about my weight. But I think I am scarred by it and therefore anxious about going. Plus of course I am a little worried about going for cancer reasons. I mean - I expect it to be a quick in-and-out visit and then I'll be on my way for another few months. But..you just never know.  I have been SO much enjoying the non-cancer life I have been leading, I hate going back into that world even briefly.
Will report tomorrow night once it is behind me.

THANK YOU ALL so much for understanding. No one else does. They just say "I'm sure it will be fine" and, honestly, I am sure of that, too, but nervous anyway.  Thanks for getting it.

Amy

ps. LENA where are you? Tell us how/where you are.

Appt went fine.  I am down 15 lbs from my March visit. Happy about that!

Actually very interesting - I told the nurse practitioner how the onc refused to write me a script for the LE sleeve for my flight last month. She got very firm with me and said that I had expressed conflict with him every time I see her (I hadn't realized it was that bad) and that I was not being a good advocate for my own health by continuing to see a doctor I did not click with, that there was no problem changing docs within the practice and the time to do it is NOW. I kept trying to say I'd think about it and she insisted it was time. So I made my next appt (APRIL!) with a different onc.  (I see the breast surgeon in Feb - they alternate).  So I guess I made my decison. Not sure why it was so hard other than to say I felt like I had to 'keep trying' to get along with him even though he insulted me and was difficult repeatedly. So I guess it will be a whole new beginning in April with a new doctor.

Ok off to watch the first Phillies game of the playoffs. GO PHILLIES.

(Of course I went to the gym early so I could watch the game. I swear I am a real gym addict by now.)

Titan - here is what happened.  I was getting ready to fly for the first time since DX, and had read up about getting a sleeve. Even though I only had 2 nodes removed, and have had no LE problems at all, I believed from what I read that I still had some risk of LE developing from the change in pressure in the plane, and so I decided I wanted to wear a sleeve. As you know, one needs an Rx to get fitted and buy one.
So I called the onc and spoke to his assistant. She said immediately that he would not write me a script. (It had nothing to do with ME personally.) She said that if a woman has not had any problems with LE up to this point, he does not believe a sleeve is necessary for flying. I told her that I had read the Nat'l Lymphedema Foundations position paper on flying and that it said there is risk to women no matter of how few nodes removed and their LE history, and that I decided I wanted one, would be glad to pay for it myself, etc.  She said there was no sense asking him b/c she had already been through this with other patients and he absolutely refused to write the script.  I asked her to ask him anyway. So she did, and called me back saying he said no, he would not write the script. I asked if he felt there was any HARM to be caused by me wearing the sleeve & she said no, just that he believed it was unwarranted.  So I called my breast surgeon's office and they wrote me a script immediately and I picked it up, got fitted, bought the sleeve/gauntlet, and wore them on the plane.

So it wasn't about ME that he said no, it is his overall policy and he is totally inflexible.  I don't know if you remember that the first time I met him, he said I should take "Vitamin P" (his little joke for Prozac) and when I declined, he said he wanted me to take it for 2 weeks and then my HUSBAND could decide if I should continue to take it or not.  That didn't go over well, but I gave him the benefit of the doubt. First meeting, i was an emotional wreck,etc.

Then another time when I asked him about supplements, he was ADAMANTLY opposed and said that he had NO interest in learning anything about them, even though 85% of his patients take them. He said it is like smoking - he tells his patients not to, and they do it anyway. I took great offense to that - said it was NOTHING like smoking, which is an activity that is proven to be harmful, whereas his patients were researching/taking supplements in an attempt to improve their health. HE then said that I should go to Cancer Centers of America, where they 'pander to' people like me.  That one was hard to get past - I felt it was deliberately insulting. I also didn't like his attitude about the supplements  - I mean, if 85% of your patients are doing something, wouldn't you want to at least learn a little bit about it?

I know there are a few other incidents, but suffice it to say that it is ALWAYS something with him. I stuck it out b/c he is considered to be the best. But the thought of bumping heads w him for the next decade (or whenever he retires) was exhausting to me. I thought it would be easier when tx was over, but then the sleeve thing came up and I felt like it was just always going to be something.

I've never switched doctors before and I think I have been scared of looking like a difficult patient (which I really am not) - remember that Seinfeld episode where the doctor wrote on Elaine's chart and all the other doctors knew about it?  Sort of like that.

But now I have done it and will move forward with the new (female) onc.  She called me back once whenI called the on-call line on the weekend with a question and I was STUNNED by the pleasant, respectful way she spoke with me - a real conversation!  So I am going to go with her. I'll let you know in April how it goes.

 Re Lena - I think that internet is probably not set up in her new place yet so she isnt' able to write. She is probably also very busy. I would predict/hope we will hear from her in the next few days.  She knows we love her and are waiting to see how she did with the move.

Judy, why do you think I was scared off the board?! I just MOVED and have been crazy busy. I didn’t even have the new DSL hooked up and configured until late Monday afternoon/early evening -- and that’s only because I hooked up a makeshift “computer camp-out” in the living room using the “entertainment center” shelf as a desk for the iBook, sitting on one of the kitchen chairs. While I’ve made some decent progress with the house since then, none of it has been in the intended computer room. That, and the living room, both look like a bomb blew up in them, and probably will until my Pack Rat has the energy to reassemble the bookshelves, put the TV on top of the “entertainment center,” so I can “do “ the living room, then I need him to move the file cabinet, put the Quicksilver on the computer desk and deal with the wiring issue (the only phone jacks are downstairs in the living room and kitchen, and the computer room is upstairs, so I can’t rebuild The Network until a “creative wiring scheme” is in place, and we can’t do that until there’s room to work in the computer room which will not exist unless the bookshelf, filing cabinet and Quicksilver are moved so I can get THOSE five tons of boxes too, unpacked and put away so there WILL be room to do the wiring thing. I am not physically able to reassemble bookshelves, pick up the Quicksilver, filing cabinet or TV set . And now, back to our regularly scheduled installment of The Great Migration.....now where did I leave off? Ohhhhh. 

OK, the guy from the boat house never showed up. So we ended up totally fucked on Saturday morning with NO HELP on the NJ end and taking way longer than the 2 or 2 1/2 hours it would have been with two men (Pack Rat and Erick [Kym’s husband] or my Pack Rat and the boathouse guy had he shown up -- and we got a late start because we waited an hour for him). About 4 hours into doing it ourselves (read: my poor Pack Rat struggling down three flights of stairs, through the courtyard and across the street to the moving truck with me “spotting him” and doing minor helping to guide stuff around the “turns”) and maybe half done, I see a guy come out of one of the houses across the street. I offer him $50 to help with the rest, and thankfully he accepts. They got it done. But of course this threw us way off schedule: instead of getting on the road at noon-12:30 like we'd hoped, we started out on the Great Migration at 3 PM, and arrived at the Pack Rat Nest around 10:30 or 11 PM. And where we got the energy I don’t know, but us rats had some major heat. ;-) Or maybe we just needed some stress relief? ;-)

Sunday morning was much better -- breakfast at the general store, then meeting his cousins who had volunteered to help unload the moving truck at my house. Shane, Sherri and Kristen met us here, and Shane, who is really talented when it comes to driving large vehicles, backed the big moving truck up the hill and parked it right up by my front door -- ummm, after we rescued them from a sudden oil leak in Sherri's car which they were coming in, that is.  After unloading the truck I took us all out for pizza (and they like their pizza the way I like mine, too -- cool!) -- then they all took the big truck back to the Pack Rat Nest and loaded it up with all the stuff we had pre-moved in August and September -- I stayed here and started unpacking stuff here to simultaneously start my own nest-building/clear out some boxes so to make room for more --  then they brought it back here and more unloading, so all my stuff got loaded in on Sunday, giving me enough work to keep me just about as busy for the next few months as if I had a full time job.

Oh, and did I tell you it's WONDERFUL here????????  

Now for some of the “adventures” -- apparently it seems that I somehow left my driving phobia back in NJ! I am not afraid of driving here -- not even doing “first time by myself” drives to places I’m not 100% absolutely sure of the route!  I made it to my Pack Rat’s Nest with NO wrong turns and NO panic attacks (OMG my Pack Rat is REALLY only 20 minutes away, too. And, same with the laundromat, library and supermarket -- got there no problems whatsoever.

Oh, and the laundromat (yes, the LAUNDROMAT!) has free WiFi!! Since I listened to my Pack Rat and used most of my clothes as packing material for my moving boxes, I had a ton of "excess" laundry, and there’s going to be more on the way since I know many of the yet-to-be-unpacked boxes were "solidified" with clothes. Since I had what at my old place would have been six loads of laundry (3 trips up and down those four fllights of stairs just to get it all in the laundry room too!), and what was I gonna do while the machines were doing the work -- of course, "have iBook will travel" -- but I'd figured on playing my sims. So I get the wash started (TRIPLE LOADERS!! Have you ever heard of such a thing?!) -- what would have been six loads last week was three loads yesterday -- well 2 1/2 so I used 3 washers), then I'm taking the iBook out of its travel bag, and the laundromat's proprietress sees me with a laptop and tells me about the WiFi.  OMG! So while doing laundry yesterday, I got to do some catching up on Sims forums and email and even send one of the new members at CTO Sims all my "adult" Sims files and tell her how she can hack any bed to be an adult love bed which will work as long as she has the animations which I'm happy to supply -- and even actually talk to people too.  Do you know that people actually talk to each other here?! I feel like I moved to another PLANET, not another STATE! I met a really cool lady who had moved up here from a nasty part of Bridgeport CT, the way she described it sounded exactly like where I just moved out of in NJ, and she was kind of like me because she also lives by herself, likes it, and has a boyfriend too! 

After the laundromat  I visited my Pack Rat and hung out with him while he was taking his lunch break from work (this is one of his work from home weeks). How cool is THAT? And sure as shit impossible while I was in NJ!

Then more work on  making the house “home” (you can call me the Unpack Rat now LOL) and while putting more empty boxes out on the porch, met my neighbors! (the residents of Units 1 and 2; I’m in Unit 3); they happened to be out on their porches, we saw each other, all said hello, exchanged names and chatted a bit. They all seem really nice. Here’s some serious bizarreness, though: I lived in my last apartment for 25 years and the only neighbors I knew by name were the ones who lived immediately next door to me.  

So yesterday I got the dresser drawers back in the dresser, all the clean dresser clothes in, and I think 45% of the closet clothes have shown up/been washed and put away. So I only had to live out of a suitcase for four days. Not bad, I packed it for a week! Bedroom nighttables are still  in the living room (meaning I need my Padk Rat to haul that upstairs!) --  in the meantime I managed to drag one of the “light” living room end tables upstairs since the boxes I’d had the lamp and clock on, were gone; they had clothes which I unpacked and put away..

Bathroom done easy, not much to do except bring in the liquid body soap, shampoo, conditioner, toothpaste, toothbrush, towels, etc. I do need to unpack and display the gas meter but I think I want to get the whole house totally functional before I start decorating it. So for now I only have the one giant rat on the bed. Yeah, decorating is going to be FUN....so much incredible windowsill space in the kitchen, perfect for all the rubber rats and bugs who used to live atop the computer hutch. Need to fix the bathroom spider, too...

Today I discovered that I have a kitchen -- a real live kitchen! Went to the supermarket this morning -- totally stocked up the freezer  and fridge, plus unpacked (and put away) all the canned/dry goods “pantry stuff” I brought with me from the old place. Oh, and what a supermarket, too! Produce to totally die for, the whole place laid out easy and sensibly, had no trouble finding anything even though this was the first time I’d shopped there by myself!  (been there with my Pack Rat a couple of times, widely separated occasions, and only to pick up a few things, not to stock up a whole fridge from scratch like I did today). And lots of space, no overcrowding...and apparently no need for an armed policeman by the exit like at my NJ supermarket...ineptly named ShopRite -- now I think they should call it ShopWrong!

OK I really need to go pass out now, I am sooo exhausted and everything hurts, but, busy tomorrow too....Linen Closet! Plus I bought the wrong peppers today (cubanesque or something like that) and need to take them back and try to exchange them for the ones I really wanted (green bell peppers), and hit the UPS store to return my NJ Verizon DSL equipment. If I'd known the UPS store was right next to the supermarket I'd have brought that with me today, but I only just happened to notice it on the way to the market!

Will try to come back soon, wanna comment on all YOUR adventures too (like Amy's onc: my onc in NJ wasn't as bad as yours but your story reminded me of mine: I'm hoping the new one I get here will be a lot better in terms of being able to deal with a patient-doctor TEAM approach).... 

~Lena.

Lena! so happy to hear from you! You haved moved and things sound so good for you - I am so happy!!!

Amy - great news about the appt, and 15LBS!!!!! OMG - I am so impressed! My Onc actually moved offices after my treatment ended and I still see her, but there is definitely something beneficial in the fact that I see her somewhere else. It is nice to detach a little from what we were seeing during the treatment phase. I hope all works out with the new doc - I have the BS in November and the Onc in Feb.

Betsy - I also think I am a true size 12 now - not happy about that. I still have some 10 clothes, but don't wear them comfortably. I am so trying to eat well and excercise as much as I can, but the band around  my middle, doesn't look like it is going anywhere anytime soon.....

Pam - we are always here for you, to listen, laugh, whatever you need..

Hugs to all, be back soon, Judy x

Hi Everyone!

I haven't posted on the board in about a year, I'm Bad! But I wanted to respond to the changing of doctors.

I think that if you are at all unhappy with your Doctor that change is a good thing.  I love my oncologist, but I can tell he is getting ready to retire.  He is concerned about his patients and  has taken on a new partner, and wants all of his patients to see her. I have 4 more years of treatment, I can only hope that she is of the same caliber as my dr.  But if I am not happy with the new Dr. I will be finding a Oncologist closer to home.

We all have to remember that we pay the bill, that we deserve to be treated with respect, and have our questions and concerns responded to.

kathy 

Amy, your onc sounds like a real a**h***. Unbelievable!! The days of doctors thinking they are gods who can't be questioned are long gone. The worst is that those kind of docs try to make us feel like we are difficult when we are really intelligent women who want to be treated and respected accordingly. I have a friend who was recently dx with DCIS and her guy is also treating her like an idiot but for some reason instead of just going for another consult she is busy asking everyone else what they would do. I don't understand. I've been spending a lot of time at work and letting it take over my life (like I used to do). In my mind I'm thinking of making this my last year - this is my 41st year of working (a couple of short mat leaves along the way plus bc time off) but it's a long time. I think I need to make time for myself - exercise every day, rest properly, less stress, do nothing, time with grandkids .. .whatever. The Wellbutrin is still helping but the real changes have to come from me. Most of the time I'm doing ok but I still have my moments. Lena, so glad you are enjoying your new home - it sounds like you did the right thing. Judy, sorry you are still feeling up and down but I think the rest of us relate -- your feelings are very normal. At this stage I'd be happy with a size 12 -- I'm still a 16 but I have lost about 20 pounds over the past 6 months..... 40 more to go but it's a struggle. This is Thanksgiving weekend here in Ontario so Monday is a holiday. Unfortunately we don't get a long weekend in November. I'll be cooking a turkey on Monday. Have a great weekend, everyone.

Oh..Judy..I have that band around the middle too! I was trying on a Browns shirt I bought and my dear daughter said..mom..I have never seen you with a paunch b-4.!   First time for everything right...and I agree it doesn't seem to be going any where.

Oh and Betsy.. the Bucks and the Ducks..#1 and #2..how about that girl! 

Geri - so nice to hear from you! And thanks for your understanding. I know that I am probably too hard on myself, it is just my way. I get so disappointed if I cannot do things "right". So pleased that you booked those tickets! I want to take a trip to NY to see Billy Elliot on Broadway. My husband and I want to go alone overnight and spoil ourselves, I just haven't gotten around to doing it. But you are so right - we always find time and money for the "necessities" but we need to have fun too!!!

Oh Titan - the "spare tyre" as we call it in our family! I was feeling obsessed with my weight recently, but I am trying not to think about it all the time. I found that the more I worried about my weight, the more junk I ate, so now I am just trying to relax and eat carefully and excercise when I can. I try for 2-3 times a week. And if I treat myself, I try not to feel guilty about it.

Lena - I have to agree with Geri and say again, that I just love to read your posts. You are so upbeat - it is great!

Alaina - how are you doing? It seems a long time since we have heard from you. I hope that you are ok in light of all the recent bad news you had and that you are recovering well from your surgery.

Helen - hope you are enjoying your turkey today!!!

Hugs to ALL of you! Have a wonderful day! Judy xxx

Judy- I am still sensitive to smells. I've also had an increase in acid reflux lately. I think it's because I'm stressed. Work has been very busy as of late. Don't feel alone about having those brain lapses, or brain farts, as I call them. Fatigue does factor into it. I also find I still can not multi-task like I use to. It's frustrating but hopefully things will improve...even though it seems like it's taking freaking FOREVER!

Titan - woo hoo..#1 & 2. I guess we are going to have to subject the chemo board to our buck and duck jokes.  Geri- you are correct Titan is an Ohio Buckeye and I'm the Oregon Duck fan. We subjected the rads board with our bantering last year, looks like this year you all get to hear it.

Lena- Be sure to pace yourself in unpacking. It's a lot of work. It's fun reading your posts, I'm so happy for you.

Helen- Happy Belated Thanksgiving!

Oh ya...the muffin top middle has taken over my body too!

Thanks Betsy and Helen for your postings! It is always nice to know that I am not alone, although I could never really feel alone with all of you to talk to every day

And tiredness always makes things worse. Helen, you are so right, I am sure that I notice my tyre more now because my shape is so different to how it used to be.

I hope you had a fun thanksgiving!

The doc called yesterday with the results of the DEXA Scan. There has been a slight improvement in my hips, but she still wants me to start on the weekly bone meds, but the SE can be acid reflux! Can you believe it? She said if I take one prilosec half an hour after the meds, it should be ok, so I will give it a try and let you know how it goes. When I talk to my friends about it, they say, "oh yeah! My Mom takes meds for that!"  - always a pleasure to hear that : )

Lena - hope you are taking it easy and enjoying your new home! Hugs to you all and be back soon.

Judy xxx

Doing the Breast Cancer walk on Sunday -last year I was in the middle of chemo and exhausted, but I made it.  This year chemo is all done, and I am still exhausted , but that's because I am working way too hard!  See, I know why, just have to stop doing it!!

 Last year it was 40 degrees, and in the middle of a nor'easter, so this year should be much more comfortable.  I will think of each and every one of my April sisters during the walk!

Love,

Geri

Geri! You are a star! I am so pleased that the walk went well and that you feel good, although a little tired! And thank you for having us all in your thoughts whilst you walked - now have a restful afternoon and enjoy the gorgeous weather!

We have had a fun weekend so far, we spent Friday and Saturday with friends and today we are just chilling - I have all the windows open and am just loving the sunshine. I have had pretty bad heartburn the past few days though and on Friday evening, it was actually painful. I am due to start my bone meds this week but am holding off until the heartburn eases up a bit.

That is all for me today, hope everyone is well.

Hugs to you all, Judy x

Hi everyone. A few things to report -

a. Remember I told you I was going to be in the BCO 10th anniv video? Well, I saw the rough cut last week. It is really beautiful and tells the BCO story very well. I cried a little.  I am not allowed to share it until it is final and after they debut it at the Harry Connick Jr concert on 10/30. But I will send you the link as soon as I am able after that.

b. A woman I know was just diagnosed. Her son played football with my husband's son and while I didn't know her very well, I did know her a bit. So I called her immediately on Sat and was so glad I did. Her lumpectomy was this morning, so I was  able to reassure her and answer some questions.  It did make the whole thing come rushing back into the forefront of my mind again with all the bad emotions connected to it. I wonder if it will EVER be where that doesn't happen.

c. I was asked to serve on a panel for a pharma conference next week. It is all big pharma marketing people and I will be the token' sufferer' - that's what they call the patient!  It is about social networking and how it is affecting patient care (meaning boards like THIS!).  I am a little nervous (it is pretty high level) but am glad to be able to represent US to industry people. I'll report back afterwards.

Fall is really here now - leaves are falling, crisp air in the mornings. I hate to see winter come, but at least with the hot flashes, I won't be cold ALL the time, the way I usually am!

Love to all. Have a good week!

Amy

ps. Has Lena disappeared again?