Starting Chemo April 2009

Hiya all,

I'm back in the Sewer, after a week just chock FULL of adventures... in addition to checking out Dartmouth, finding an apartment (I REALLY GOT IT! Locked it in, as in, I paid the deposit and signed the lease!), opening a bank account, driving lessons (a course I'll call Behind the Wheel In New Hampshire 101), us making "banana rat bread" (that's what I decided to call it since neither of us had ever made ANY kind of bread before!) and getting my very first cell phone (which I don't actually HAVE yet, we had technical difficulties my Pack Rat is in the midst of resolving) -- I think I'm all adventured out for now. Thank goodness I had all that WILD SEX with the really hot Pack Rat to "relax" me!  ;-)

I'm back here and it feels like I'm on another PLANET -- and a really inhospitable one at that. I can't wait to leave! Well moving day is accelerated to Oct 1st so I better get back packing more boxes. My Pack Rat is coming down Friday after work (this week he's working in CT) with his pickup truck to "pre-move" as many boxes as I can pack this week/will fit in the truck.

Geri I was thinking of you yesterday as I drove back here in white-knuckled, steering wheel gripping TERROR over the Tappan Zee Bridge in the DOWNPOUR! I was thinking "too bad I don't know where Geri lives because this would be a perfect day to wash that filthy car she told me about!").

Amy, the new link to the BCO reunion also had a Page Not Found, sorry. Oh, and no there won't be any pictures of either my old or new apartments since I don't own a camera! LOL. So the next step is packing all the books/"pantry" stuff so the bookshelves (as well as their contents) can go. That'll give me prime space to move on packing the rest of the stuff. The books/bookshelves ready to go is my goal for Friday night. (That, and maybe some more HOT WILD SEX when the Pack Rat gets here...hehehe)

Geri -- you're not a Stage IV. As such, I strongly urge you to NOT go on the aromatase inhibitors at this point. I'd flush my Aromasin down the frickin toilet if I were not a Stage IV.  Tell your oncologist your stage IV IBC net buddy finds AIs to be almost as bad as chemo. Did you know I have to take the frickin antidepressant to fight the depression the AI is causing me? And that's in ADDITION to the continued hot flashes, stiff joints and hurting feet (which thus far I have NOTHING to "fix" since SAMe is too expensive for me). When I stopped the Femara for 2 weeks, a couple days after stopping I was feeling almost human again, and as the 2 weeks neared their end, I actually felt GOOD. Within days of being put on Aromasin (after the 2 weeks off Femara), I was totally messed up again. SAMe helps the stiff joints noticeably (and mood, a little) but it's a supplement, isn't covered by insurance and is expensive (I had to stop taking it :-( ), and I NEED the Wellbutrin now to hold the depression down to a dull roar. I mean crap, if not for the AI I wouldn't need to take an antidepressant! Like I said, if I wasn't a Stage IV I would go off this shit in a flat nanosecond and I'll tell anyone who's NOT Stage IV and cares about QOL to stay the hell away from it.

Oh and speaking of Wellbutrin and depression -- Helen! Glad to hear taking Wellbutrin is helping you too.  I know EXACTLY what you mean, it's making life a little easier for you; having energy to actually live life instead of lying on the couch all day, and no more spending half the day crying for no reason -- but at the same time you aren't also saying things like "it's nice to be myself again" -- which is how it is for me: yes I feel a lot BETTER taking the Wellbutrin, but I'm still somewhat "off," too.

Judy -- sounds like you had an excellent vacation! That's GREAT! Um, hmmm, Oh wow, I'm glad your oncologist appointment went well and all's good with you in that regard I see my oncologist on Wednesday and I'll have to "rush" him to send that referral up to Dartmouth now.

Betsy -- how much more "camping in your own house" till your kitchen's done (timewise, i.e., days/weeks)? I'm actually going to HAVE a REAL kitchen in my new place, not this barely bigger than a closet claustrophobic little room you can hardly even turn around in but they call it a kitchen since it has a sink, stove, fridge and almost NO counter space. Good luck with the bone density scan (or have you had it?). How are you feeling?

Alaina, IMO you and anyone else who does reconstruction is really brave. Back when I thought I was going to have a mastectomy, I had researched reconstruction and noted that if it's done right, it looks REALLY good, and remembered all my "body angst" times when I wished my breasts were a LITTLE bigger (wishing I had 34Ds instead of 34Cs) and my stomach smaller, and how I would point to my middle saying "I wish I could put THIS..." HERE (pointing up at my chest at that moment)...so I thought wow, get rid of my gut AND have a nice bosom too? But all the stuff I then started to read here at BCO posted by women having recon scared me (I am a total sissy with regards to pain), and on top of the pain, infection risk, and best case scenario being even more disabled than I already am while I healed up from it JUST for something COSMETIC, I rather lost my enthusiasm for reconstruction. I mentioned it to my Pack Rat, showed him my research and he just said "Go flat!"  Well, even though I didn't have a mastectomy, I'm still lopsided and am doing what I would have done if I HAD had a mastectomy: when I dress to go outside, I wear a C-cup bra (my left breast is still healthy and a C; my eaten by cancer right breast shrunk and is probably a and stuff a sock in the right cup to make up the difference so I don't look lopsided when I go out. (If I was going to have a BMX, I'd just go flat all the time, it's easier (and cheaper than the mastectomy bra with breast forms alternative) -- if I can't have 2 healthy breasts and I'm too chicken to have a new matched set built and installed, I prefer all flat to lopsided...but, I digress. Alaina -- GOOD LUCK! I hope it all goes well! I wish you the brand new sexy ta-tas of your dreams with as few possible SEs and pain! Also, congrats on being "deported." I hope my new oncologist will either let ME get "deported" or at least make it worth my while to keep it (USE the darn thing for my blood draws and scan contrast injections: nobody except the chemo nurses would ever go near my port even though it's a Power Port and CAN be used for more than chemo so I still get the darn needle sticks in the arm for blood tests and scans!). I'm kind of in a similar spot with oncologists as Geri was (I believe my current oncologist is medically competent, but I don't think we work so well together so I'm hoping to get a better one at the new cancer center).

Lena, good luck on the move. It sounds like you have found a perfect new setting and you sound so much happier.

Alaina, here's hoping for a easy surgery and a quick recovery

Titan, Amy, Geri, Betsy - hope everything is going smoothly

I'm on drugs - the Wellbutrin - is helping a lot. I'm still sad about so many things, but the drug does make it much easier to get through each day so I'm sticking with it. Today was a bummer - someone hit my car while it was parked in the hospital parking lot. The woman did come back and gave me her information and said she would pay. Let's hope.

I'm also getting ready for the new school year but I don't get summers off - however, workdays are much easier. This week has been intense already. I have 8 new schools to supervise and 3 brand new rookie principals. So I've been spending time in each school getting to know the folks and coaching the principals on their entry plans. It is actually enjoyable because these are great people. But the days are long and we already have parents complaining about things even though the school year hasn't even started. I'm with you, Judy -- it is hard to go back after a nice, long summer break. But I'm not complaining.

Hi all, I hope everyone is ok here - it has been very quiet for the last couple of days.

We have been busy at school this morning for various orientations and are now ready for a nice last weekend of summer!

Wishing everyone a fun weekend and a good year ahead whether it be at school, work, home or anything really - it should just always be good!

Hugs to you all, Judy x

Lena - you just sound so much happier...you bring a smile to my face (and it sounds like to Pack Rat's too, but for totally different reasons).

Have fun this weekend

Hi to everyone

Geri

And Alaina - hope the surgery went well and that you are feeling ok!

Judy x

Amy, thanks for the report on Alaina. It's good to know she is on the path to getting better.

It's hot here in Toronto - another heat wave. It's been an amazing summer. School is heading into high gear so I'm very busy again. My computer is out for repair. I'm using my laptop from work. Amazing how addicted we are to our computers.

Do any of you worry every time you have an ache or pain? I find myself being concerned about everything. I see my onc next week so I guess I'll ask her about theses things. Do we ever stop worrying?

Hope everyone is having a good weekend.

Thanks for the report on Alaina, Amy. No kidding about her telling you how she feels like she got hit by a truck! :-O

Geri --  Yup, the thought of finally escaping this Hellhole of Horror IS really uplifting. :-) A week ago today when I got home from my Pack Rat's house, I set myself the following goal: "By Friday, I'll have everything on the bookshelves all packed in boxes and ready to go." The goal was achieved on Thursday, not Friday, in spite of my Pack Rat telling me on the phone how I'm "way ahead" and should take some time to relax a little, and do you know WHY I'm suddenly willing to "kill myself" to get out of here? Because of what I saw on Wednesday morning (this past Wednesday, 8/25) on the way to my oncologist appointment. The cancer center's transportation van driver picked me up first, but had to pick up another patient. OK, my present cancer center/hospital is located in my #2 most feared area of this city (I'll go, but only if I have to AND someone else is driving; I actually did try to drive there once but got lost, had a panic attack and as soon as I got somewhere I recognized, went straight home and called a taxi as soon as my heart stopped pounding in my chest and I could breathe again!), but this other patient lived in my #1 feared area (so bad I've never even TRIED to go there at all in the whole 25 years I've lived here), and when we picked her up, I noticed across the street from her house, a barbed wire fence. 

BARBED WIRE?!?!?!?! BARBED WIRE!!!!! :-O WTF?!?!!!! I GOTTA GET *OUTTA* HERE!

When I spoke to my Pack Rat that evening and told him, he said "I've been telling you for years you're in a very bad place to be." 

Helen -- the heat wave is coming back here, too. Oh well.... and yeah I'm addicted to my computers. LOL, I've known that for YEARS!

Catch you all next time...

~Lena. 

Sorry kids..haven't had time to talk!  Been busy getting kids back to school...one went Friday..we are taking the other one next Sunday...plus work, refinancing our house, planning a vacation and taking an on line class to renew my real estate license has kept me busy!

Seems like everyone is doing pretty well!   Good news...

I was going through my "briefcase" today..it was getting too full and I found the file filled with all the surgery/chemo/rads/insurance/path reports/blood tests..blah blah..blah..took a look at them and then just PUT THEM AWAY...it felt good.

Betsy..I exercise alot but I'm not losing weight!  I think it is that menopause "thing"

Pam - SO GLAD you came back to check in.  I am pretty certain what you are going through is very normal.  The cancer psychologist I saw during treatment mentioned to me several times that many cancer patients go through some serious reevaluation after treatment is done.   One thing I have realized is that there is NO TIMETABLE for our emotions on this journey. (Sorry, I hate the word "journey" but can't think of a better one!)  Anyway, I know that for me, I have gone through periods of very strong emotion that I was sure would be permanent, but then passed.  For instance, during treatment, I couldn't WAIT to be done - I was SURE I would never be one of those people who were sorry when it was over. But then, when tx was done, I went through a period of fear of being out on my own without meds being pumped into me every 3 weeks, and almost did a trial (which wasn't really a good fit for me) just so I'd have continuing medicine. I was fixated on fear of recurrance.  But then, as time passed, I barely think about recurrance anymore.    i have learned that these periods come and go, and I now just accept my feelings and ride them through. But if one stayed for a while and I counld't get past it, I would go back to the psych for some help. So that may be something to consider for you.

I read a post by a woman on here recently that said she was FOUR years out and was JUST starting to get angry about everything cancer had stolen from her and how her life had changed. it reminded me that there truly is no timetable to all this and we have to be accepting and forgiving of ourselves (and so should our loved ones).  

I know that I have a much stronger sense of living life NOW and not letting it pass me by than I did before. I place a much higher priority on time with loved ones, and on experiences in general than on work or acquiring things. I feel much more intentional about how I spend my time/energy than previously (when work tended to suck it all up) and am more deliberate (and less passive) about it as well. I think that is normal, and a GOOD thing. But there has to be balance - and being intentional/deliberate without being impatient/irritatable seems to be the goal to strive for.

I wonder if there are any books on this subject (life post cancer). Does anybody know? If this is so common, it would be much easier/cheaper to read a book than go to a therapist! 

Betsy  - re exercise/diet -  I have spent the last 2 months intensely dieting/exercising.  I go to the gym 6x/week and work with a trainer. I am working HARD - like sweat-dripping-on-the-mat hard. Not just walking on the treadmill.  I eat VERY LITTLE - mostly lean protein and lots of veggies. No alcohol, sugar, very little carbs.  I mean INTENSE.  Seems like all I do is work/gym/eat/sleep. Then repeat the next day.  So far I have lost less than ten lbs (!!!) BUT the trainer says I have actually lost much more fat and built muscle in its place.  I can see definite changes in my body and I am in smaller sizes and I just tried on the jeans that I outgrew last winter (when i started tamox and put the weight on) and they FIT easily.  So I am def making progress. But it is NOT a kind and gentle workout.  I went to a wedding Saturday night and had decided I would eat whatever I wanted. I kept raving about how great the food was and then realized later that it was because I hadn't eaten 'regular' food in so long!  Also, at my table was a BC survivor from 1993.  She had chemo every 2 weeks for SIX months back then! No port or anything! She has been healthy ever since - it was wonderful to meet her.  

But my point is - I think b/c of the tamox and menopause, the type of fitness/diet stuff that might have worked before will not work anymore. If you want results, you have to really focus and BLAST it hard. I am getting results - BUT if I had worked out this hard a decade ago, i could have been a super model. Now, I'm just getting decent results. But it is not easy.  (I do feel great though.)

Sorry this is so long! Hope everyone has a good week.

Amy

Welcome back Titan -- boy do I know how it feels to be "busy" these days! Anyhoo, Titan, if all you're doing is exercising but still eating as much or more than you were prior to exercising, no, unfortunately, you're not going to lose weight. You'd actually lose weight faster if you cut your calories and did NOT exercise, although the best (healthiest) way to do it is with BOTH exercising AND reducing your caloric intake. A little very simple math: There are 3500 calories in one pound of fat. There are 7 days in one week. 7 x 500 = 3500. So, even if ALL you do is eat 500 calories per day less than you burn, you will lose one pound per week (unless you're taking hormonal treatments, in which case you lose one pound approximately every 9-10 days,..arrgh :-P) -- but you will still LOSE. If you DO exercise while you diet and thereby burn more calories than you would being sedentary, you get to eat a little bit MORE food if you want to, while still consuming 500 fewer calories per day than you burn, plus exercise is just plain ole healthy. My current weight loss update: 11 pounds down, 19 more to go.  I'm doing it with the combination of caloric reduction and exercise (walking 2+ miles a day, packing/all the stair climbing with moving empty boxes in, full boxes out, and molesting my Pack Rat every chance I get LOL...sex is exercise too!).

Betsy -- so glad to hear you enjoyed your trip, but sorry about your mom falling -- glad she didn't hurt herself TOO badly, that she's OK now.  Oh, and that kitchen remodeling business -- it's WONDERFUL to hear of the progress and that you'll soon be able to use your "brand new" kitchen. Since I'm moving, I'm getting a "brand new" kitchen too. Maybe we'll both be cooking in our new kitchens for the first time, simultaneously? My move-in date for the new place is October 1st --- do you know when your kitchen will be totally finished? :-)

Pam -- yup I remember you. I'm glad you're doing well with the clean mammogram.  :-) Yup, I gotta attribute the "make the time you have left the best it can be" syndrome as the cause of my decision to move -- I want to spend whatever i have left with my Pack Rat!

OK, gotta go -- time to assemble the 30 or 40 new boxes I hauled in from the supermarket this morning. 

~Lena. 

Titan - I completely understand you! I lost 70 pounds a couple of years ago, a combo of diet and excercise. I then lost more on chemo, just couldn't eat and was depressed. Now, I am so conscious of everything I eat and excercise regularly. It just sits on my belly and hips and drives me crazy. The Onc says that as long as I eat sensibly and excercise that is what counts. I am beginning to think that I just won't lose that little bit that I am trying to lose. But I have so much trouble with my self image as it is, I don't need anything else to add to it...

Lena - hope the packing is going ok. I am loving your postings.

Hope everyone else is doing well today. Alaina - thinking of you and looking forward to seeing you back here very soon!

Hugs to you all, Judy x

Amy..I think you are a super model.

Geri...I bet that port weighs at least 10 pounds!

Hey Judy and everyone else...one year ago some of us were getting ready for radiation.

 For some reason I'm having a hard time getting my mind around what happened last year....

Happily deported!  Sore and groggy, but compared to bilateral mastectomies, a piece of cake.  I should be my normal self (?) by tomrrow.

Awww...thank you for the 10 lb. pass Titan - I will take it.  My boyfriend told me to have the port bronzed like an EMMY - he has some strange ideas, but luv him!

Thanks Judy - not up to celebrating tonight - unless you call flying on a Percocet celebrating , but will do so this weekend.

Everyone is right on about this year being a delayed trauma from the bc events.  We were all concentrating on side effects, survival and just making it from day to day this time last year.  For me, these past few months have been the first time that I have been able to really think about what this all meant - changed my life, so I think we deserve a little post-traumatic stress time, just to absorb it all - and hopefully, then we move on.

Geri

Helen - I know I worry about those twinges too, but most of mine have been from medications or just getting older, and they go away or I just get used to them.  Always god to have things checked out, if for no other reason than peace of mind.  With your experience in having a secon dx, I can understand the concern, and I will be thinking of you on Tuesday that he will put you at ease.

Geri