Starting Chemo April 2009

OK need a break from this tedious Sims hacking stuff -- my latest strategy to take my mind off of tomorrow's core needle biopsies, in stereo.

The Ritalin has really been helping me focus what's left of my marbles. I had made a "matter-disintegrator" toilet and the sonic shower's all set to go (I wrote down the procedure) but immediately had to put it on hold....because out of the blue (from my POV), Raeven built a Sims hacking forum (The Drawing Board@Woobsha) and made me an administrator in it, and in posting something over there, namely how the matter disintegrator toilet and ready to rewire sonic shower were making me want to build my ta'Valsh installation -- which I cannot do until I finish the food replicator....

....which I started in the fall of 2008 and had to put off when I hit Phase 2 due to my then catastrophic ignorance of what was really involved in a project of this complexity. I was coming up wanting to try again early spring 2009 just shortly before chemo (since I was at least back to doing custom food hacks), but chemo brain put ALL my Sims hacking (and everything else that necessitated an attention span greater than a mosquito's) on hold "indefinitely." I made a couple of really simple things from summer 2010 through March 2011 and at least LOOKED at the replicator, but it's only now that I've osmosed enough corrections to the catastrophic ignorance AND can concentrate/focus well enough to give it the time it needs. But for right now, my programming tool has had enough bouts of instability that even with the Ativan I took, I'm still kind of pissed at it and need a break. So here I am...

Chelev -- yup, glad to hear your oncologist appt went so well. :-)

Geri -- ANOTHER vacation to a warm place? Well glad you enjoyed it. It's still vacillating from raw rainy-drizzly nasty cold and/or windy 40s to 50s which would be nice if it wasn't so freakin windy. There's been only one day in the past month I'd truly call Springlike so far, last Monday. Started out 40s windy rainy nasty but the afternoon blossomed out to 60, partly sunny and lightly breezy. So tell me, when it gets hot and chokingly humid, you'll probably want to visit NH (or Alaska LOL) -- right? 

Yeah Amy, isn't it nice to have an onc you can deal with? About the sleep thing -- seeing how (naturally) totally crappy and grumpy I felt when I had the sleep issues, I don't care anymore that I have to take meds to sleep -- as long as I CAN sleep all the way through the night (minimum 6-7 hours) without interruption, I'm satisfied.

Betsy, yup, mostly in a holding pattern at the moment*. Question for you though, since you seem to be our lymphedema queen; did you just have a sentinel node dissection or all your nodes removed? And I'm so sorry about your mother. That must be so awful for you. 

Helen, how are you feeling now that you're retired? Without the pressure of keeping up with a full time job, do you feel that your general level of stress is easing up any? I've noticed that stress makes depression worse, personally.  And yeah, spring is still mostly avoiding northern New England, too. :-(

Judy, are you feeling any better or are you still on the emotional rollercoaster? 

Titan... yeah I'm going through the boobs or no boobs thing again. Either my Pack Rat really and truly doesn't care if I get reconstruction or not, or he's so good at hiding negative feelings for if I should decide "no recon" I can't tell how he really feels. He has always said it's up to me, as it's MY body; if I don't want to feel any more physical pain than what's medically necessary he says it's fine with him if I go all flat all the time or flat at home plus wearing breast forms when I go out.

So then I got on the "Since no matter what I'm going to lose sexual feeling in my chest, maybe I should at least LOOK nice so as not to lose BOTH feeling/function AND appearance" train of thought, after the debate:

I can go flat (no recon/extra pain) and get a mastectomy bra with pockets and wear breast forms so I'll look nice when I go out -- but how I'm going to look so "hot" while dressed (between the prosthetic boobs and my slimmer body) that I'll feel like such a fool when I take my clothes OFF and have nothing "upstairs" (not to mention forever embarrassed at the mere idea of doing a striptease for my Pack Rat which I haven't done in ages because of the mangled breast). If I get the recon, though, I'll look "hot" with or without clothes (er, well, as "hot" as possible for the ugggh 50-year-old lab rat with reconstructed breasts that I'll probably be if/when this comes to pass).

And then I started back on my recon research, and talking with my Pack Rat, who still thinks I should have had a mastectomy back when I finished my chemo. And when I just mentioned this "feeling fake" with prostheses, he said recon is totally up to me, and I quote "If YOU think it would really make you feel better about yourself, it's probably worth doing even though it's not medically necessary and will be more of a pain in the ass than just mastectomy."And, he added a suggestion: IF I decide to do recon, he thinks I should have immediate recon with saline implant (neither one of is comfortable with the idea of possibly having silicone getting loose in my body via a ruptured implant). 

So I read Geri's post here where she says it was worth it to her to be uncomfortable for a week but be able to look good. And then I also read stuff elsewhere at BCO (plus a PM from one of my Stage IV IBC sisters who had BMX with recon and is glad she did, although it sounded like her recovery was a little more difficult than Geri's -- way more than a week and how I'd "better" have someone stay with me the first week)....

And reading about hard ones, and easy ones, and hard ones, and easy ones, so many here at BCO I can't decide on my own. SOOOOOOO:

I'm going into the holding pattern on the recon issue until I meet a BREAST SURGEON who will be more likely to estimate how MY body will react to all this. 

So what else.... I have been, and am still so damn busy.

Last week -- Spring Cleaning, did I mention it? The only time in my entire life I could truthfully say "My house is spotless." LOLOLOL  And, #2 appointment with new psychotherapist plus PCP appointment regardin my shoulder. She ended up referring me to an orthopedist.

Got permission from the landlady to paint the upstairs porch -- any color scheme I want. Yes, my Pack Rat will help.  I want yellow and white on the walls, and on the floor (hopefully) the shade of brown that matches the bedroom floor (since the bedroom leads out from the porch. Don't know when we'll do that, or, the shopping for the containers and dirt (I had wanted to try container gardening on the deck). It's hard to make physically active plans like that on the heels of major surgery (recon or not, IMNSHO having my chest removed constitutes major surgery), and also I'm wondering if spring is coming so late this year I won't have time to grow anything. Then to kick off the end of last week: back into Sims hacking, Raeven's new forum, discovered new "little" market which sells great fresh fruits and veggies, and a few days off from doctor appts.....ah and last week's Hump Day and Sunday afternoon/evening decadence.

Laundry on Monday, with some Sims hacking.

All day at Dartmouth yesterday.... had PT/INR test (temporarily stopped Coumadin in preparation for biopsies) with port flush, then the new medical psychiatrist who's taking over my antidepressant and Ritalin prescription (and she gave me another prescription for Ativan too). Next: saw the orthopedist, who asked me a few questions about my shoulder pain and had me do a few movements with my arms and shoulder to see how extensive it was. She acknowledged it and gave me a cortisone shot, saying it might take a couple days to take effect, and let her know if there's problems.  Then home and back to more Sims hacking.

Except for Sims hacking, today I'm deliberately being decadent and lazy because tomorrow morning is biopsies at 9 AM and I'm scared to death since I stupidly decided to give THIS doctor "a chance" to demonstrate how it's OK to be awake since he can do it without it being painful. Uh-HUH, well we'll see.  When my Pack Rat comes over tonight I'll have to tell him I need 'extra' stress relief. ;-)

Seven weeks to go before I HAVE TO have me and Shuttlecraft  T'Kiri "Totally New Hampshirized." Meaning: I actually exchange my NJ driver license for a NH one, register T'Kiri in NH so I can get NH plates, then get my Pack Rat to fix T'Kiri's smashed right fender/put in new headlight assembly so she'll pass inspection, which has to be on my birthday. Or whatever order to do it in. And speaking of T'Kiri, she has her 6 months oil change/maintenance coming up this Friday morning. Hehehe, and since I use my Pack Rat's mechanic, I'll be in his town so maybe he'll come out and have a cup of coffee with me.

So there's been my last two weeks and the rest of this one.

Hope you're all doing OK. 

Oh..and Betsy..so good to hear from you but sorry to hear about your mom...she sounds like a lovely lady (like you)...

Helen..you feeling better about the retirement?  We just had a party for someone retiring today..he look sooo very freaking happy...it made me start thinking about it!  

Judy..thanks to you for being our glue that has held this thread together for 2 years!  Wow..2 years..can you guys believe it..2 years ago we were so scared about going through chemo...

Lena - glad the biopsies are done and hoping you get the best possible news.  I love reading your posts, but don't understand a thing about the Sims - just enjoy hearing from you.

Paula - like everyone else, I'm sorry your almost "ex" wasn't able to handle the emotional part that comes with this diagnosis.  As any of us can say, the physical pain is doable..even the chemo and radiation..it's the worry that haunts our days if we let it.  I am happy that, for the most part, I feel as though I am managing to keep my emotional barometer in check.  But then, I have one of THOSE days.  I have my next onc appointment Monday and, of course, while I am feeling well, those appointments just hit me in the gut.

Hi Chelev, thought of you when I visited friends in Venice last month...and yes Lena, I went to a warm vacation spot AGAIN...lol.  I made myself a promise when I went back to work full time, that I was going to enjoy my life and stop constantly worrying about that "rainy day", cause, guess what?  the rainy day has already come!  So, I am going to vacation my butt off - as much as I can afford!

Helen - congrats on your retirement announcement.  Bet you're glad that it's common knowledge now..I'm guessing you are going to love retirement!

Titan - you are a hoot...such a great sense of humor!

Amy - Your group does sound like it's a lot of fun.  I have had soreness "under" where the port was.  I'm not sure why, but it just comes and goes.

Betsy - so sorry about your mom's situation.  I was a hospice nurse for 10 years and I am so upset that they would not consider her for at least the palliative care.  Hopefully your sister can get things in order.

Judy - I agree...you have been the one who always checks in, always sends good wishes...so, I'm wishing you and all my dear friends on BCO a Happy Passover and/or a Happy Easter (in my mixed religion marriage from years ago, we called it "Eastover" to be inclusive.

Geri

Brain's still down (pain pills) but my Pack Rat took me out to dinner, said I "should" have a night off from cooking and washing dishes. I like it when he spoils me... :-)

oh he's in the shower, oughtta run up there and "get " him while he's naked..... heh heh heh. Maybe if I'm on top or we do rattie style.... ;-)

Enjoy your weekends everybody! 

Call them and put your mind at ease Helen

Update -- Dr. P. just called. My "gut" was right again. The "new one" is malignant too, and he says that it looks the same as the one that woke up in the right breast. Specific pathology report coming on Monday.

Please everybody tell Suzy Sunshine to just fucking drop dead, OK? Thanks. :-)

Lena,

I have been away from this site for awhile fighting with my emotional roller coaster without you guys. When I posted that my marriage was over - you guys understood. Wish I would have stayed in touch. Because people outside of the "cancer club"- a club that noboby wants to join, They don't understand that once you are a member it never goes away. You hope that the follow up exams are ok - and you smile and tell well meaning friends that you fine, when actually we're not - we are terrified that the test will show that the "cancer" is back. Others outside of this experience don't get it. They say they understand but they don't. I'm stronger as a result. I get it and will always be greatful for the women that have fought with us and before us for without the support I would have lost my f***ing mind. Lena- wish I could be there with you now to wipe your tears and hug you. 

Suzy Sunshine..fucking drop dead.

Ok..Lena girl..what's next?

I'm not going to throw anything at you. I'm leaving BCO because there's absolutely nothing any of you can do to make this all go away, and since I can no longer even FEEL amused or entertained, much less BE amusing or entertaining so as to maybe distract folks from their troubles, there's nothing I can do to make any of yours "go away" either.

I just don't see the point of "support groups" anymore. Of late most of the time I come to BCO I get even more depressed than I already was, and other than possibly serving as an example others can point at to make themselves feel better in that "Oh my! Thank goodness I'm not HER!" sense, I'm useless. I'm not able to make anyone else's side effects or cancers go away any more than anyone else can make mine go away. This whole thing is just totally pointless.

It's easier to just "suck it up" and be alone by myself than it is to be alone in a crowd. It is what it is and there's no changing it.

I wish you all the very, very best. 

God...life sucks. I just listened to a recorded message of my mom saying she loved me and goodbye, just before she was transported to ER. Now Lena...saying goodbye. Tears are flowing for both. Words can't express my sadness. Lena...none of us truly understands what you are going through. Even if you don't read this...I am sending a HUGE cyber {{HUG}}.

Betsy - so sorry about your mom. (((hugs)))



Lena, I understand what you are saying and it's not for me to convince you to stay with us but I hope you do find a way back to us. Selfishly I love reading your posts - you have a real flair and your stories are so I interesting. But mostly i feel that the women in this group have become sort of a special family and that we care about and support each other. Unfortunately, the odds are that more than one of us may get a recurrence at some point - I've already had it two times. - so I hope we can continue to support each other. Lena, you are an important part of this family. I know you need time right now but I do hope you will come back when you are ready.

LENA - I don't even know what to say.  My temperment is very social and it strengthens me to have others around me for support. Isolation would make things much worse for me. But I know that you are not that way and may find interaction here too draining or challenging and find solitude more peaceful. It's hard for me to understand, but I respect your choices.  The only thing I would ask is that you not be too absolute about it.  You may feel differently at some future point, and I wouldn't want you to feel that you closed the door and locked it and can't come back  Please consider us your sisters and that we are always here for you with an open door & open arms. And whether you post here or not, you are in our hearts and 'one of us.'

Amy

Hi all,

An update on my Mom. She has been in the hospital since Sat. p.m., it was touch and go but she seems to be hangin' in there. I'm heading to Seattle Friday morning with my sister, who was flying into town for our sisters weekend. We (my sisters and I) decided to bring the weekend to my Mom, it was scheduled to be at my house here in Portland. Hopefully, Mom will be released to LTC with hospice on Friday. Geri...I'm totally shocked at how my Mom's insurance company has handled my Mom's care. A second doctor has ordered hospice...so now if the home health nurse decides to overwrite their orders we have the 2nd doctor on board. Watching what has happened with my mom, it scares the hell out of me...as I don't have kids that can help advocate for me when I'm old. For those of you with kids....thank your lucky stars and hopefully they will be there for you when you need them.

I know Lena sort of shocked this group but I can't blame her. Everyone here has stated their response beautifully...sadly...eloquently. As sad as it is, only she is walking this path. I hope and pray she comes back too. Although..her sims emails, I didn't understand at all???? I'm not a techie..but I am a trekkie.

I thank you all for letting me vent and share my pain about my mom. This group has helped me in more ways than you can ever imagine. Thanks

Betsy 

Lena has not signed on since 4/22. So she has not seen most of our recent posts to her. I hope she will come back at some point and see them.

I have had a rough week emotionally - very uncharacteristic for me. Can't quite get a handle on it yet.

Betsy - sending love and support to you re your mom. My parents are 78/83 and in great health but I know my time is coming to deal with these things and I feel like I'm waiting in line for my turn. She is lucky to have you and your sisters to love, care for, and advocate for her.

Amy

Sandy - this is the APRIL 2009 group - we have been done with chemo for two years already. While we all wish you the best on your journey, I think you'd get a lot better support in the APRIL 2011 group!

Best to you!

From Amy and all the other April 2009 group