Starting Chemo April 2009

Thanks Helen!

Have a good Sunday all!

Hugs, Judy xxx

Was it something I said??   OK..I will talk to myself:

 Hi..Titan..how are you today?

Titan:  I'm fine..went to see th onc yesterday, everything is fine..see you in 3 months..

Titan:  Good!  Be sure to tell all your buds on BCO!

Titan:  Ok..I will!

Titan:  Ok Bye

Blah, blah, blah.

Hope everyone is having a great week!  It still is so DARN HOT!   I've had enough. 

I have been to Niagara on the Lake. My daughters played in some soccer tournaments in Niagara Falls & Buffalo and the ONLY redeeming part of the whole experience was the day trips we would take to NOTL.  Charming is the only word that can describe it. I iwll never forget the flowers! So beautiful! Your visit with the other ladies sounds very special.

I saw a short video by some BCO women who were a chemo thread like we are who met in Nova Scotia (or somewhere like that) for their FIFTH anniversary. The video made me cry. Maybe we should consider that - not doing anything too soon, but meeting for our 5th and REALLY celebrating. It was really beautiful to see.

I have realized we have not heard from Lena in a little while.  Where are you? Check in, please.

I am doing ok. Worked with the personal trainer again tonight. During the last set of squats, I felt like I might throw up. It was a combination of the exertion and the water I drank.  I couldn't decide whether to tell him I had to stop and take a break or risk it.  I risked it and got through it ok, but still.....  it felt a little shaky.  It was a HARD workout. Now I have to do it on my own (without him watching) on M/W/F for the next three weeks. By the end of that time, I will be stronger and it will be easier. It is kind of gratifying to see progress. But the whole thing is HARD. I feel like all I'm doing is work/gym/eat/sleep, then do it again.  I'm feeling a little dragged down the past few days. I do see some progress in my body though - not AMAZING progress, but enough to keep pushing on.

Titan - it is GOOD to hear 'see you in 3 months.'  I am LOVING not having to go to the doctor so much.  Hope you are too.

Love to all my April sisters. 

OH one more thing - I had to do this exercise tonight where I balanced on my elbows and toes (bows & toes, he calls it), like a modified pike position, and hold it for a minute. It is really hard by the end. Each time I did it, he added more time. My body started shaking by the end, but I kept telling myself, "I held still when they put poison into my body. I can hold still for this!" And I didn't quit!  When he called 'time', I made myself hold it a few seconds more instead of flopping down exhausted. I wanted to beat it, not just survive it.  He said it was a mental challenge and I passed it every time. I do feel stronger inside as a result of what I've been through.

Helen..you can listen in anytime...mostly I feel like I talk to myself anyway..my DH has selective hearing..my DS only hears the words..time for dinner...and my DD has issues of her own.

Helen..I think I know whom you are talking about with your friend with the brain mets...hoping she can get rid of those damn things...I hate this freaking disease.

Amy..yes 3  months is good..one more year and I will hear 6 months..

I have also been to Niagara on the Lake but I was very young...I don't have a passport so can't go there until I get one...

Helen..has US tourism slowed because of the passport laws?  

Hi all,

I'm busy as hell and freaking out with the moving stuff -- Grand Purge is done and now I'm packing up stuff in boxes. I am extremely emotionally raw from going through "ancient treasures" (up to and including an answering machine incoming message tape from 1989 and includes voices from the dead!). Which brings us to the Bucket List thing: the only thing on my Bucket List is getting the f***ing hell out of craphole NJ so I can spend what's left of the rest of my life closer to my Pack Rat.

Alaina -- um yeah, you sure got that right about breast cancer making you face up to your own mortality. Stage IV REALLY rubs it in your face, you know? 

Seriously, I mean it -- getting the eff outta here is the only thing on my Bucket List now.  Not only did I do what I wanted to do, and rode it as far as my ambition and ability were able to carry me by the time I hit 40, I also got some over-40 "icing on the cake of life" (unexpected pleasure/reason to live) in the form of falling into the writing hobby (if anyone would have told me when I was younger that I would write 12 sci fi fantasy novels, I'd have thought they were nuts), meeting my Pack Rat and the Sims stuff. So getting the hell out of here and being with my Pack Rat IS finishing my Bucket List. Well, it will be once I'm UP there.

Thing is, though, finding all those "ancient treasures" from my "past lives" as a musician and then scientist (sorting through and packing it all up in boxes) really did an emotional number on me. I couldn't stop crying for days. I'm better today but not by much. I've got 17 total boxes packed so far, and I'll be "pre-moving" as many as will fit in my car (leaving room for my suitcase and iBook) on Saturday -- it's coming up on time for what would be my usual "summer week" visiting my Pack Rat at his Nest in the North. I missed last year's trip because of chemo, but I'm not only going this year but we're going to be doing stuff like taking a ride out to Dartmouth/Norris Cotton Cancer Center and looking at apartments just to see what's around. Oh, and yeah, going to that little place in the woods off River Road where the four little waterfalls are (ooops, I guess that's Bucket List material too: I told my Pack Rat I wanted to see that again before I die!). But I digress...he said bring as many boxes as I can when I come up for my visit and he'll hold on to them for me, whatever I move now won't have to be moved later.  I have 2 boxes in the trunk and 6 in the back seat at the moment. It's so hideously hot/humid I'm waiting till Friday night to put more in the back seat because I don't want the stuff in those boxes to frickin MELT sitting in the hot car (music tapes, floppy disks, test pressings of my last album, hard drives, zip disks...I should've packed more books first, books don't care about sitting in a hot car, but I only got two boxes of books packed so far!). But packing is such a bitch too. In addition to my left side semi-paralysis and bad back, I'm spatially retarded and it probably takes me ten times longer than "normal people" to decide how different sized things can fit in a box and pack them in tightly enough so nothing will be rattling around in there. It's like a jigsaw puzzle, and I always hated those when I was a kid since I was so lousy at 'em. I was also always lousy at wrapping gifts and after some years stopped and either gave my friends unwrapped birthday presents or simply decided to take them out for dinner for their birthdays instead of buying presents! So being skill-less and clueless when it comes to those related activities, I really HATE HATE HATE this packing stuff and can't wait to be done with it already!

My Pack Rat says from what I've told him I've done so far, that I'm doing great and he's teasing me I'll have "nothing to do" soon, but I look around here at all this abject CHAOS and seeing all this STUFF and tomorrow morning I should go out and get MORE boxes and it feels like I'll NEVER be done! He's telling me "relax, don't kill yourself, you have two whole months yet..." and I'm thinking "ONLY TWO MONTHS to get all this stuff packed, find an apartment and get everything else taken care of!" (shut off electricity, phone and internet here/turn it on for the new apartment wherever it may be so I'll have electricity and Internet when I get there, close my bank account here and open one up there, give Social Security the new address to mail my disability checks, etc.)

I know, I know, I know, I apparently have a hairtrigger 

-----PANIC BUTTON!!!!---- 

But I'm freaking out big time. I haven't moved in 25 years, I had a lot less stuff then, and also I didn't have a disability or a terminal illness then either.

OK then.....

Amy -- Glad your checkup with the surgeon went well and you're free of doctor appointments till Sept. (wish *I* could say that!). Congratulations about your being in that video. Not my cuppa tea, but I'm glad you enjoyed it (mostly).

Judy --  Still tired or feeling a little better? The latter, I hope.

Betsy --  is your MIL better? Cellulitis sounds awful! As to your FIL only being able to work the microwave, he's almost like my Pack Rat, only my Pack Rat doesn't HAVE a microwave! He doesn't even have any real food in the house (NO fresh fruit or veggies, not even onions or potatoes which he likes!) -- he eats stuff out of cans mostly, heats 'em up on the stove, when he eats at home anyway (when I'm not visiting). IMO living on canned food is OK if you're at Ground Zero (or doing chemo), but I don't like to live full time as if it were Ground Zero (or too tired to cook real food from being on chemo!). Darn right I'm going up there with a food shopping list already made out, we're hitting a supermarket BEFORE we go to his house! On the subject of food -- you asked about Wellbutrin and weight loss. Yes, I'm losing weight (on the scale this morning I was 145 -- which means, I LOST 10 POUNDS! :-D 10 down, 20 more to go), but I'm on a DIET, remember? So I can't blame it all on the Wellbutrin.  However, I CAN say that the Wellbutrin DOES seem to be something of an appetite suppressant and makes it much easier to diet -- since I've been on it, probably a couple times a week I find I'm not hungry for a particular meal and forget to eat (usually this happens to lunch, occasionally breakfast). This should be interesting to see if I can maintain the diet while visiting my Pack Rat for a week. See, here at home I plan out all my meals with my calorie count sheet (my chemo ruined brain -- which I frickin GIVE UP on it ever getting better -- can NOT remember how many calories are in ALL my usual foods and servings), and while I can still bring my calorie count sheet and plan to an extent (especially since I'll be cooking!), I'm sure there's also going to be spontaneity (such as going out for a couple meals -- he wants to take me out to the Olive Garden again, he said (last Oct when I went up to see him for a weekend, he took me out to eat there and it was wonderful, so if he wants to do it again I won't say no), and I know I'll want one breakfast at the diner in Claremont, sigh....and probably a little drinking too, which I have assiduously avoided since starting my diet because a glass of wine is 100 calories, which I'd usually rather use for EATING! About the blood clot -- I don't know what it FEELS like because I haven't FELT it. My oncologist picked it up from one of my scans (indicating blockage of the portal vein) and blood tests (very low platelet count). I'm still taking Coumadin for it, dosage adjusted at my last appointment to 2.5 mg/day. Naah, no cramps for me, just my joint aches, feet hurting and neuropathy in my arms.

Helen -- How are you doing on the Wellbutrin? I actually find it "paradoxical" in a way. I mean, I'm sure it must be helping me (beyond making it easier to diet) because I have enough ENERGY to do all this moving stuff, I stopped crying for no reason and haven't been wishing I was dead of late anymore either. Plus both my Pack Rat and my friend Kym tell me I *sound* so much better. The paradox -- I don't really feel "happy" or "good." I am deriving no satisfaction from my achievements, I still have trouble sleeping, my ability to perceive time is WAY off (daytimes drag no matter how busy I am, but evenings fly away at warp speed!), and I haven't even been Simming much not just because of the moving stuff but also because I just haven't felt like it much. Um huh? Not wanting to do something I normally think is FUN? More evidence in support of our dopamine shortage theory: Wellbutrin is helping me but not enough.  Oh, and no SE's for me either. Yay!

Geri --  sorry to hear about your cousin's death, and poor Bonnie. But how was Vermont?

Titan --  You're right -- NOBODY "deserves" to have cancer!

Gotta go......don't do anything I wouldn't..... ;-) 

~Lena. 

I wrote a really long post yesterday, Geri! Well, glad to hear you enjoyed your trip to Vermont, and also that you can check one more item off your Bucket List.

OK, today's a little cooler, so I went out this morning to the supermarket, brought home 6 more empty boxes, and practically filled my car with more of those already-packed boxes (I have room for one more but I'm too tired to bring it down yet, maybe a little later). 

Hmm, even though I decided Box #4 is going to be the last one going in the car for this trip, I'm still going to see if I can pack some of those six empty boxes at some point today or tonight...tomorrow, in addition to making the shopping list and packing for the trip, I need to see if I can actually clean up this place a little so I don't come home to more chaos (I EXPECT chaos at my Pack Rat's nest! LOL).

Ummm, hmmm.  You know what? I am sick of packing boxes.  I'm going to take a break and play my simmies for an hour or two first.

~Lena. 

Hi

Lena - we both posted at the same time, so I missed yours the first time around.  You sound tired, but excited to be moving near Pack Rat, and I'm happy for you.  Moving is a bitch though.  Did it last ten years ago when I seperated, and the next move won't be until I'm ready to retire and leave the Northeast winters (Oh, how I hate snow!).

I'm in the midst of getting my condo painted, and the fumes are awful. I am cooped up in my bedroom with my poor dog...hopefully they will be done on Wednesday, and things can get back to normal (did I say normal?)

Tomorrow I go for my pre-op for the port removal (finally getting de-ported on September 1st.)  I also have a second opinion consult on Wednesday with another onc to discuss AI's (have osteopenia, and you guys know how every new chemo has given me bone and joint pain, which I still have from the Herceptin, so I want to see what this onc says, and if I like her, I will change onc's at this point, which was my plan all along, since I don't really have a great relationship with the current onc.)

Thanks everyone for asking for my friend Bonnie - this past Thursday was her second chemo, and so far she has handled some minor side effects well.  I don't have the heart to tell her it may get more difficult - she will find that out if the time comes, but I can only hope it won't.

Well, off to bed - hope everyone is doing well...sounds like life is moving forward for all of us, warts and all - and that's a good thing.  I will take all these little problems over this time last year anyday!

Geri

You're right about the link. Sorry!  I wonder what happened.

Anyway try this one:  http://community.breastcancer.org/forum/7/topic/756624?page=1#idx_4

Nope..no results from the bone density test yet..though I was an absolute bitch..(sorry..but I was)...the person who did it said "I don't have an MD after my name so I can't tell you anything"...So I said well..I guess I will just go running for 5 miles and if I break a leg it will be your fault"..I think I was nasty..ah well..BC will bring that out in a person!  I was like..I'm the patient here!!  But it really is not a big deal..I've been running and feeling fine ...my onc said if I needed it I would have to take Fosomax or something like that...I won't know for 2 weeks....!

Amy..I tried that link and it wouldn't work for me.

Lena..glad you are happy in the next...you make me smile! 

Geri..does your friend have early stage lung cancer?  I really hope that she will be OK...my uncle had lung cancer back in the 60's..they took his lung out and he is almost 90 years old now! 

Hi all

We did visit the Canadian side, but didn't manage any of the casinos : ) In Rhode Island we visited Newport which was such a lovely town and we also spent time on the beach there. In Boston, we spent hours just touring the city, such a beautiful city and also took the kids to a waterpark in NH. I am not a huge fan, but spent the day relaxing. In Vermont, we visited the Ben and Jerry's factory, Shelbourne Farms and just enjoyed the beauty of the area. So green and gorgeous weather! We travelled from there to Upstate NY for the night to break up the drive and spent the day hiking in the Adirondak mountains which was fabulous, although a little tiring : ) Niagara was breathtaking! Such a sight! We went behind the falls and on the boat that takes you right up to them. We had a fun day there. We came back via PA also to break up the drive.

So, all in all, a great 12 days! Good to be back though and not living out of bags etc. One more week till the kids start school, but I am back to work on Monday. I hope to get some rest over the weekend.

Hope you are all doing well! I have an Onc check up on Monday - trying to stay calm : )

Have a wonderful weekend and hugs to you all!

Judy x

Lena, it sounds like you are busy with very positive things. So happy for you.

Hi all,

Just a quick check in. Sounds like everyone is doing well. Titan I go in for my bone density scan this week. As I recall last year they didn't tell me anything. I'm not sure I'm willing to go on any of the "bone meds" as bone pain is a SE. I was dx with ostopenia last year. Hopefully all that calcium I've been gagging down will have helped.

My surgeon onc (my wonderful dr) has taken a new position as the director of the cancer institute...so now I have to figure out a plan b. I'm bummed. She said she would continue caring for her current patients but with a 1/2 schedule it's going to be almost impossible to get in. I suspect that means she won't be adding any new patients. I left a msg last week for her assistant to call me, and I still haven't heard. I need to know whether to continue my trental & Vit E experimental meds or not. Of course...my dang boob started flaring up again. I've been doing my LD and wearing my waffle compressor so I can't figure out what's wrong. Maybe it's because I'm not excerising enough. 

We are about at the half way point in our kitchen remodel. I miss my kitchen sink the most but it's been fairly easy. Good thing it's been nice weather and we have a nice backyard. They are painting today. In just over a week our countertops go in. So it's coming right a long. If any of you are in the neighborhood..you are all invited to our "break in the Kitchen party". It will be in October. Well the fumes are getting to me. Time to head over to the in-laws. Wish me strength...I'm not looking forward to staying there. I asked my dh, would he be willing to pitch a tent in the backyard which sounds like way more fun to me... He said no. Damn....

Hi all,

Quick note - Lena...so great to hear a happy note in your post.  Your apartment sounds great and that should make you feel even better once you get settled.  Very happy for you - you deserve it!

Judy - Onc appointments are always stressful, but we all know, necessary Vermont and New Hampshire were the states we vacationed in two weeks ago - stayed a few nights at Lake Morey in Fairlee Vermont, and had dinner in great restaurants near Dartmouth College - you're right, absolutely beautiful country.

Betsy - sorry your booby is flaring up again.  Hopefully it will settle down quickly.

Titan - You have such an awesome sense of humor - always make me smile. Unfortunately, my friend Bonnie is stage 4 lung cancer, but has tolerated her first two chemo's very well.

As for me - I did my second Bucket list item (again, thanks to a kick in the a** from Alaina.  I made an appointment and interviewed a different onc.  I liked her, she actually looked me in the eye when she spoke to me rather than reading my chart while answering questions.  I took and had filled the Arimedex prescription that she gave me when I agreed to try it (most concermed about the joint and bone pain), but I'll give it a try, and she agrees to change it if I can't deal with side effects.  She did tell me that in a number of recent studies, they have found that in stage I cancer the AI's have been shown to give a 17% advantage to remain disease free. And she and I both have decided that advantage is enough to try the AI's.

I called my original onc on Friday and cancelled my appointment for this Tuesday.   I spoke to the medical assistant and told her I wouldn't be returningand that she  could tell the onc I would send him a note, but that it was no reflection on his medical expertise, more like a divorce where two people just have irreconcilible differences, and their is no one person to blame.  Within 5 minutes, his secretary was leaving messages on my cell phone and house phone that he wanted to speak to me.  I didn't call him back - not part of my plan, and besides, if he really wanted to talk to me, he should have called himself, not have his secretary do it!  So, i wrote him what I consider a nice noe tonight, thanking him for his medical care over the past year and a half, but that I needed to move on to a more comfortable relationship for the long run.

So, one more thing accomplished!  Will start Aromatase this week, and monitor how I feel - since I'm already achy, creaky from the Herceptin, I don't know if I'll be able to tell the difference right away.  And Lena, I will remeber you're experience and that is why I asked the new onc about changing at the first sign of bad side effects.

Talk to you all in a day or two - getting ready to be deported on September 1st!

Geri

Hi all, I am back from the Oncologist. Everything is fine and I am going back in February. I do have the Breast Surgeon though in November. I feel very relieved and happy that I can put it to the back of my mind for a while.

Geri - I am really pleased that you have found a new Onc that you are happier with. These things are so important. Good luck being deported!

Alaina - I always love to read your posts. You are so full of positive energy, I can feel it coming my way! I hope and pray that the surgery goes well for you and you will be in my thoughts and prayers for a speedy and easy recuperation.

I have just come into work, so I must run and catch up from this morning.

Hugs to you all and have a good day,

Judy x