Starting Chemo April 2009

JudyNaomi

Hi all,

Geri and Amy, good to hear from you! Geri, good for you in keeping those bad thoughts away. Hopefully, you are just fine, but you know you can always come here if you need to share any worries and concerns, and please also let us know how the appt goes and when you get the results.

Lena, please let us know you are ok. It is cold here this week, so I can only imagine what it must be like in NH! I hope that you are settling in and feeling brighter than you have been.

I am generally doing ok, although I am very tired. I had a quiet 10 days with my husband and eldest daughter away and it was just me and the two younger ones and it was quite relaxing. I had made sure that I did the bare minimum so I would have the strength to be with them. Now, though, the household is crazy again and I am chasing my tail! We are back to the old discussion of me needing more help at home, but it just does not seem to be happening. I have decided however, that something has to give, so I informed the family that I may well not be making dinner every evening. As I do most other things, I decided that we would have to find a way to get the meal together between us, so we will see how that goes. I am hoping that the group effort will be a step forward

We will be celebrating Hanuka this week. Tomorrow, I will be going to buy the kids some gifts. We call Hanuka, the Festival of Lights and I dedicate it to each and every one of you April Ladies, who have brought so much light and hope into my life!

Sending you all hugs, Have a good day and stay warm, Judy xxx

Lena

I'm "disappeared" because I'm still maladjusting and the medical reboot (financial end of things) resulted in kernel panic I'm not sure I'm out of yet. Happy everything, everybody.

Titan

Hey Lena...good to hear from you anyway...ya know we worry if you don't check in..

hrf

Hi everyone. Geri, here's hoping for great results  I'm also very tired these days but I think it's the stress from work. This is the busiest fall I have had in years. Every day there is a new crisis. I'm glad I'm heading to Boston for a few days to get away from everything.

JudyNaomi

Lena, thanks for coming by. It is good to hear from you.

Helen, have a good break! Boston is such a gorgeous city!

Hope everyone is doing well today. Take care and sending hugs, Judy xxx

JudyNaomi

Hi Ladies, I hope everyone is ok 

I have had a very tiring week and am looking forward to some down time over the weekend. It will be nice to be altogether this week after my husband and daughter's trip.

Geri - I hope you are not too worried about your test and appointment, pls let us know how you are.

Helen - I hope you are having a blast in Boston!

I am sending ALL of you hugs for the weekend. Take care and stay warm. Judy x

inthemoment

Hi all - thanks for asking after me Judy - I am holding it together right now - repeat blood work on Tuesday, follow-up with oncologist on the 14th.  No sense worrying for more than a week - we'll see if I can maintain this attitude after the blood is drawn!

Hope everyone has a nice weekend - cold here in New York - some snow flurries tonight...brrrr

Geri

BetsyBuzz

Hi all,

Work has been crazy busy for me, hence no postings in the evening as I'm just too tired. I spoke with my boss and scheduled my sabbatical for the summer of 2012. I told him after that I may want to go part time. I also told him as part of the succession planning that maybe I get demoted to a less stressful position. He said he would think about it. I feel good that I have taken the stand that my health is more important than the money flow...but to tell you the truth it scares the S_it out of me. I really do need to work on my stress levels.

I have an appointment with an acupuncturist on Thursday. I'm hoping he will help on multiple fronts, stress, truncal LE, weight loss, hip problems, etc.

Geri- you are in my thoughts, hopefully this will be a nothing situation. You seem to have the right attitude about it. Good luck.

Lena- Remember I did warn you about the move and how much it would take out of you physically & mentally. Hang in there...soon you will regain your footing.

Titan -GO DUCKS!!!! Another year down...looking forward to the Auburn game! Let's hope this year Oregon wins. Quack, quack, quack..... Time for more cowboy caviar.

 Judy- Stand your ground...good luck on making the house work a team effort. If that doesn't work, think about hiring help. You need to take care of yourself so you can be there for your kids & dh.

Helen - Hope you had a good trip and a relaxing time in Boston.

Betsy 

hrf

I am in Cambridge right now - next door to Harvard where I'll be taking my course. But tomorrow we'll go into Boston and look around. I haven't been away since before my dx so I was nervous but now I'm glad that I'm here. Harvard is the most beautiful university campus and town that I have ever seen.

JudyNaomi

Geri - glad to hear that you are holding it together for now. I am thinking about you and hoping that this is all nothing.

Betsy - so nice to hear from you! Your plan sounds good and I think it is great that you have thought this through and are putting your health and well being first. I already have help once a week, but that is all we can stretch to at the moment. I am standing my ground, but I don't feel like things are running smoothly. I get the feeling that family members don't much enjoy the "chore" side of things, but who does??? (LOL). I have acupuncture and find it very helpful. It certainly helps me reduce the stress levels, although, I think I need to go weekly, but again, it is quite costly. Still, I do enjoy my visits.

Helen - I am so pleased that you are enjoying your time away. Boston is a gorgeous city!

Lena - hope you are ok, Titan - you are awfully quiet...

I am doing ok. We were out for lunch with friends yesterday and last night we had company. We had a good laugh, eating, drinking and playing board games. Today, though, I am exhausted. I just took my daughter shopping and it is just freezing out there! The wind is biting!

Hope everyone is keeping warm.

Hugs to all for a good Sunday, Judy x

AmyIsStrong

Well we are inching closer to Christmas and I am hanging in there trying to get everything done.  I am doing almost all shopping online, figuring it is easier for the boxes to show up at my house, just waiting to be wrapped. Plus I discovered the dollar store last year (yes, I am the last person to not know about the glories of the dollar store) and now buy gift bags and use them - so no real wrapping needed!

I have a lot of client Christmas gifts to do and it is always very stressful for me - I have to remember all my clients and not leave anybody out, and give something interesting and creative but not spend a fortune on it. It is a big project. So I ordered all my items (made my list, checked it twice, lol) and started to feel a little overwhelmed at the prospect of assembling, wrapping, labeling, shipping etc.  So I wrote an email to my daughters asking if they would be willing to come for a day and help me attack the project. It is VERY hard for me to ask them for help and something I have really struggled with. But I did it. And almost instantly they both wrote back and said they'd love to help, and we set a date to do it. I am SO relieved. (And it also shows a change in their attitude towards me - much more helpful, supportive, less taking me for granted, all of which I am very happy about!)

Judy - I feel for you in your struggle to make things more manageable for yourself. I think the core of the problem is that you have been an awesome mom/wife and your family is 'spoiled' (in a good way) by that and don't want it to change.  It is hard to make changes and make them stick, and it is often so easy to fall into the trap that 'it's easier to just do it myself.'   Have you tried chore wheels, a board on the refrigerator or any of those methods to assign tasks?  Also,  and this may sound harsh, but if it were me, I would make a list of all the household things that need to be done, and mark which ones you feel you are able to do. Then the other items would be either marked as assigned to husb/kid, outsourced (pay someone to do) or just NOT DONE.  You can do things like put each kids' clean laundry in a basket in their room and let them put it away (or else they can just live out of the basket) - laundry is a pet peeve of mine.   Or use paper plates two nights/week so there are less dishes.

You know, my kids are in their mid/late 20's now. And as I look back, so much of the stuff I thought was so important at the time is actually hard to even remember! I didn't have a cancer diagnosis to deal with back then, but I was a single parent racing around to all their sports, etc.   I probably should have fed them a few less chicken nuggets along the way, but.....it all works out in the end.  So please try to be good to yourself. You are more important than any items on any to-do list!

And one funny story - my mom called me recently and said in this hushed tone.."Amy, I read that you can get cancer from some cleaning products." And I said "Mom I can PROMISE you I did not get cancer from overexposure to any cleaning products." And then I laughed uncontrollably.  I guess that shows you my attitude about manic cleaning (and my sick sense of humor)!   

Hope you are all smiling today.

Love always to my April sisters

A.

JudyNaomi

Amy, it is so good to hear from you. I loved the story about your Mum's call!

You sound very organized for the Holidays which is great! On line shopping is a good solution for this time of year. I am finding that just going to the store for something regular/not Xmas related is very time consuming at the moment. Parking lots are busy, there is so much traffic and it is just so cold outside. So, I am trying to organize myself to make as few trips as possible to avoid the crowds. I used to love the hustle and bustle of the Holidays, but now I find it very overwhelming. It is great that your daughters are coming to help you, you will have a great day with them! And oh, yes - I am a big $ store fan. I go there alot, for all sorts of small things. Especially small gifts for the kids, like hair stuff, make up, greeting cards and gift bags. They are a great solution to wrapping gifts and they can be reused too.

Thank you as always for your words of support and wisdom. I seem to be finding things harder than usual at the moment. I am not sure why. We do have a division of chores at home, but something always seems to come up; too much homework, after school activity etc. And I am the WORST at waiting for them to come home. I will always take the "it is easier to do it myself" option. I need to work on that. I may give your idea a go, I like the idea of there being an option for "not done" and to see how that goes. When I don't get around to something, I feel like I need to apologize for it! (don't ask me why). I really am not such an awesome Mum or wife, I am just a perfectionist in everthing I do. (which is not necessarily a good thing...).

I know that there are more important things than the household and I should concentrate on myself. I really need to work on strategies to achieve that.

You know, you are all wonderful, because I come here and just go on and on about all my frustrations and I really appreciate the fact that you are all here for me. I do have a lot to be thankful for and sometimes I just need a kick in the @#@#$@#$@ to remind me of that! (excuse the @#@$#@$@$).

We are having company for dinner tonight and then again on Friday night, so I have plenty to keep me busy this week. We are out with friends again on Saturday which should be fun. I am looking forward to the Winter Break from school so that we can have some family time together.

I hope everyone is staying warm and enjoying the lead up to the Holidays.

Hugs to you ALL!

Judy x

AmyIsStrong

OH I FORGOT TO TELL YOU ALL - I am getting a makeover tomorrow! I just got SO sick of my thick bushy wild hair with the flat awful out of the box color. I went to a fancy salon (that was recommended) and told them "I am a breast cancer survivor and my hair is growing back and I need help. Don't give me the new girl who is trying to build her book up - I need someone who is experienced."  I had a brief consultation and the lady said yes, the box color is flat and one dimensional, the (expensive) color from the salon will be a big improvement. Plus I desperately need cutting/shaping. It is tomorrow afternoon.

One good thing about letting your hair grow out so it is truly awful is that whatever they do will be an improvement. Instead of being nervous, I just feel like "Have at it!" and let them do whatever they want.

Will post a picture when it is all done! I am so excited!!!

Amy

JudyNaomi

We look forward to seeing the photo Amy! I had my hair relaxed (Brazilian) at the end of October and it has made such a difference to how I look and feel. It also shows the real length which is great too! I wash it and dry it quickly (no styling needed) and it feels good to have it "swaying" around again.

Hope you enjoy the appointment and being pampered!

Hugs to you all, Judy xxx

JudyNaomi

Hi all

I hope you have all had a good week. I am doing well. I am not too keen on the cold though, so I feel a bit like hibernating : )

This evening, we have several of my husband's students over for dinner and tomorrow we are out with friends for lunch. Other than that, I am looking forward to staying warm and cozy as much as possible. It is real "gather round a good movie with the whole family" weather.

I hope everyone is ok. Amy, how is your new hair do? Geri, Helen, Lena, Titan, Betsy and everyone else - have a great weekend and stay warm.

Sending you all hugs, Judy x

hrf

I was a Harvard student this past week. What a wonderful experience. We worked hard - 12 hour days but I learned a lot. I was with a team from my school district and there were folks from across the US and Canada there. Very nice people. A few of us went a day early so we had time to explore Cambridge and a full day in Boston. As it was my first time there, we just got an overview of the city but managed to drop into Cheers, had a boat ride of the harbour and quite a few great meals. I am totally exhausted and plan to sleep much of the weekend. The winter break can't come fast enough. I need a rest.

JudyNaomi

Helen - I am so pleased that you had a good week and enjoyed your experience at Harvard! It is always so refreshing to step out of our normal surroundings and meet new people and learn new things.

I hope you are having a restful weekend. I am also looking forward to winter break. We are not actually travelling anywhere, but it will be nice not to have the pressures of our regular routine.

We have had a busy weekend and I am actually pretty tired out. We are going out for a while this afternoon just to give the kids a break and looking forward to a quiet, cozy evening this evening.

Sending you all hugs and hope everyone is doing ok,

Judy x

inthemoment

Helen, I lived in Boston for two years after getting out of Nursing School and I found the city amazing - absolutely loved it there.  I'm glad you got to enjoy at least a part of it.

I had a full set of tips put on my nails this weekend.  I have been trying to grow my nails since I finished chemo. with no luck.  I hated looking at them all chipped and split, so I decided I could do something about it, and got the tips.  I feel so much better - more feminine and less like a cancer patient!  Should have done this a while ago - wait, that was wrong - I did it now, because "now" was the right time!

I also made an appointment in January to have my hair colored.  No matter how many people tell me the gray "looks great", it is not how I see me, and is a constant reminder of what I went through.  I am going to try a light brown base with a golden brown hi light and some low lights.  I'm nervous about whether it will damage my hair that is like gold to me - just to have ANY hair, but the stylist told me it should soften it up, which I really want, because the gray has a consistency that I don't like at all.

I think I am doing this partly to keep my mind off my appointment with the onc on Tuesday to see if my liver functions are still elevated - if they are we start on a bunch of tests, and I REALLY don't want to go there - prayers please for good results!

 Geri

Titan

Geri..I'm sure you will be fine! I really do!  MY SIL's liver enzymes were elevated and they said it was because of her arimidex she is taking...so she and I enjoyed a nice couple glasses of wine!

Judy..I swear we could be twins..I haven't posted alot on here because I'm trying to get everything done for Christmas!  Busy Busy Busy..with work and shopping and going to parties and baking cookies and decorating and putting the tree up and decorating it and the house...I don't think I have sat down until right now for the past 4 days!  You guys know my daughter is getting married so along with Christmas we are planning on booking the church, ordering flowers, trying on more wedding dresses, booking the dj..there are a million things to attend too! Oh..plus my mom's dress..though I would really like to lose a couple of pounds...haven't had much time to eat but haven't had much time to exercise either..hopefully back at it on Monday!

Betsy dear...I've missed you..good to hear from you..go Oregon!  Beat Auburn and Cam Newton!  My Buckeye's play Arkansas..on a freaking Tuesday night (remember how I used to say freaking all the time)..must have been a chemo thing ha ha...I swear chemo brought out the potty mouth in me!

So..is everyone feeling ok?  Have the onc visit in January..every 3 months until I think September....not sure how long for the Bs..ever six months so far..have a mammo in May...last one was perfect..which I was excited about..BUT..big but here. ..triple negative's don't usually reocurr in the breast..it mets to the soft tissues..like brain, liver, lungs..YUK!  Elizabeth Edwards was orginally dx'd as a tn..then it came back weakly er-pr positive..isn't that weird.

I feel so badly for her family (not her ex)...I dunno..sometimes it scares me..Elizabeth Edwards had all the $$ in the world to be treated but cancer still got her..scary isn't it...

JudyNaomi

Geri, so good to hear from you! My good thoughts and prayers are with you for your appt tomorrow. Please let us know how it goes. We look forward to seeing your hair when it is done : )

Titan - welcome back! We missed you! I remember when you said your daughter was engaged it seemed so long till the wedding and now the time is coming nearer - so exciting! With the holidays and all, it must be a very happy time for all your family. My next Onc appt is in Feb, but I don't have any imaging so I am always worried that it will come back somewhere else and it will be too late for them to treat it. Horrible thought! I mean all that chemo must count for something, surely???

I have had a nice day with my daughters today - the school has a Professional Day for teachers and my son went to the childcare there, so the 3 of us, just ran some errands, had lunch together, they helped me with the cooking - it was nice. It is good to be inside now, the wind outside is howling.

Sending everyone hugs and have a great day! Judy x

Lena

OK.......(omfg)......

 

After I was done being super-busy with the unpacking, setting up house (mostly: the living room still needs some “work” and I need to finish the bookshelves and put out all my psycho geek decorations), getting The Network rebuilt (OMG what a truly horrific fiasco!) -- and was then only moderately busy -- the magnitude of all the change started to hit me (yes you warned me Betsy, you did indeed. Go on it’s OK, you can yell “Toldja so!”).  And it’s STILL all weird. Sometimes I find myself stopping what I’m doing, looking around and thinking “What am I doing here?”, other times I stop and look around and find myself admiring the house as if it were SOMEBODY ELSE’S.

 

My Sims hacking mentor told me once I get the living room done and can start back on my Star Trek marathons, “it’ll all ‘snick’ up” and I’ll feel like it’s “home” here. My Pack Rat only just got the DVD/VCR mystery solved last week so I’m finally ABLE to run those Trekathons again, only I haven’t felt like running them yet -- just watched one episode of DS9 after dinner with my Pack Rat last Thursday night, but that’s been it so far. Borrowed a couple movies from the library but they didn’t help me feel “home” yet either, they were merely a pleasant distraction.

 

Medical is up and running now though, but I ran into some unexpected medical reboot complications (with regards to Medicare Part D, since I’m on SS Disability). Please don’t ask me to recount all the specifics. I’ve ALWAYS had problems not being able to understand or remember very much about ANY kind of insurance details (anything legal or financial either for that matter) that I can’t blame on cancer, chemo brain or aromatase inhibitors. I ran out of a couple meds because I couldn’t afford to renew them out of pocket (got ‘em now though). One of them was the Aromasin and I figured “well at least maybe I’ll get a little time to feel better until this gets all straightened out.” Problem is, I didn’t get to feel better at all and was off it for 3 weeks too. :-( The stiffness and aching not only didn’t go away, but got worse, and I also felt a bit depressed even though I only missed one day of Wellbutrin. Yes, I did get back on the meds I ran out of, and the Medicare “special help” subsidy also came through and I can actually afford the copays when I pick up drugs at the pharmacy.

 

On the upside of medical matters, however, the medical PERSONNEL seem to be a lot better and nicer here, although the sequence seemed a little weird. In order, I had appointments with:

 

1. Nurse Practitioner (personally, I think of them as “almost-doctors” so that’s the term I’ll use here) of my new PCP (who I didn’t meet until TODAY). Well...had an appointment with him Nov 1st. He was very nice, and he actually listened to me, so I like him.

 

2. New oncologist (I like her better than my old one too) and,

 

3.  same day as the first oncologist visit, with regards to my deep vein thrombosis/being on Coumadin, I saw another almost-doctor (the PCP’s almost-doctor had set me up for this when I saw him on Nov. 1st -- get this :-O they have a whole Coumadin DEPARTMENT with special program to manage patients’ Coumadin dosages at this place!) I liked her, even though she said ::::shuddering to even think:::: the “L-word” (Lovenox), as in there’s a chance they might want me to go back on those horrible injections. (I didn’t run out of my Coumadin so kept taking it, but my INR was down that day (back in the “good” as of 2 weeks ago after a dosage tweak, good today too).  But she actually said my condition is too complicated for her to decide what to do with me, that I should see a hematologist but that hasn’t been set up yet and quite frankly I’m not gonna push it because I do NOT want to be told I have to do those injections again. :-O

 

But anyway, back to my new oncologist. She not only listened to me, but she answered my questions straight-up. I actually asked her how long I’d have and what I could expect if I were to stop the Aromasin. She says I’d probably make it a couple more years okay before organ mets began to set in, after which point I would “go”pretty quickly, though unpredictable. Well something to think about and finally got someone who’d be straight with me. FINALLY! In the meanwhile, she ordered scans (PET/CT), for both the cancer we know about (i.e., was the Aromasin helping by either shrinking my tumor and bone met -- or is it simply keeping me stable), but also to see if the scan will show any reason why I’m extra stiff and achy. AND -- she gave me the OK on getting my port out. I was about to schedule it but as it happened I’m actually going to keep it a little longer, since THIS facility, unlike the old one, actually USES it for blood draws and scan contrast/radioisotope injections), just see if I think having it used is really worth keeping it or not. See, when I’d told my Pack Rat I could get it out, he said “Just because Trinitas didn’t use it for those other things doesn’t mean Dartmouth won’t.” So when the assistant from the surgeon’s office called to schedule me, I told her about how even though it’s a Power Port that CAN be used for blood draws and scan injections and other intravenous stuff besides chemo, Trinitas refused to use it, so since it was bothering me and was maintenance (needed flushing) and wasn’t being used, I wanted it OUT, but if Dartmouth would use it, I’d give it a try for awhile and we can always schedule surgery for another time. She said yes they use it (and they DO! I’ve had two blood draws and my scan injection in my port so far) so I’m thinking on if it’s worth keeping it even though it does still bother me with bra strap, purse strap, computer bag strap and seat belts.

 

Scan results -- no visual condition to explain all the pain, but as to the tumor: REGRESSION -- to the point where she may want to re-biopsy my breast in a few months because she thinks the tumor MIGHT actually be DEAD. Nodes all clean and the bone met is practically GONE. (gosh, the cancer’s going AWAY at least for awhile, huh? so why do I feel like physical crap all the time?! something just seems SO wrong with this picture!)...well anyway, new onc also put me back on Femara. She actually says MAYBE some of the pain will get better on Femara as compared to Aromasin. Now that I’m on the Wellbutrin (which I wasn’t when I was ORIGINALLY put on Femara), I figure maybe the Femara won’t be as bad this time, certainly not worse than the frickin Aromasin anyway...

 

oh...and for the first time since this cancer nightmare started -- I get THREE MONTHS off from oncologist appointments -- next time I see her is 3/2/11! Too bad I can’t get rid of ALL the medical visits till March...oh well..

 

4. PCP -- she’s good too. Very thorough, and she has also seen breast cancer patients like me who have bad SEs from AIs and she seemed to be frustrated by those meds causing SEs.  Since the onc had said she didn’t feel she knew enough (but a general internist and/or psychiatrist would) to even have an opinion about my AI/dopamine hypothesis. And then to my shocked suprise, my PCP’s comments about breast cancer and AI treatment in general (i.e., how many women she’s seen having problems with it even though it works well against cancer) kept coming closer and closer to that on her own, so I pitched it at her to see what she’d say, mentioning how all the AI estrogen depletion SEs are all on the dopamine deficiency list as well, and how the Wellbutrin, with its dopaminergic mechanism, has made enough improvement that I’m (still only barely, but at least barely) able to tolerate AIs. She totally understood it, said it made sense, and also thinks the AI estrogen deficiency effects other neurotransmitters also, but to get THAT far involved in it is in her opinion really a matter for a psychiatrist (so she set me up to see one next month), although she was qualified enough, she thought, to discuss Wellbutrin in conjunction with SSRIs. When I told her the Lexapro/unacceptable sexual side effects story, she said yes, she’s aware of those SEs and understands completely why I won’t put up with them.  But she also says for some patients (ones like me who consider their sexuality very important), Wellbutrin, which I’m already on, helps that, and she suggested I think about the possibility of trying a smaller dosage of an SSRI than the 10 mg of Lexapro I had been on (say only 2.5 to 5 mg) alongside the Wellbutrin, that possibly this would lift the remaining depression and not cause the sexual side effects (and if it did, I’d know it right away from prior experience and  could just stop taking it and the fact of having been on a smaller dose would mean the SE would go away quicker). So she says I can think about it on my own and if I decide I want to try it, call her at any time and she’ll call it into my pharmacy, or if I feel like hanging on and discussing it with the psychiatrist, that’s OK too. She also said, it’s probably a shot in the dark, but the last medical possibility she can think of which would explain several of my symptoms, is thyroid malfunction, so she ordered a blood test for that and I have a 3 week followup with her for January..which will also coincide with having to get my INR test again...which leads to...she actually took it upon herself to explain the splenomegaly which has been turning up on my scans since the thrombosis issue. Due to the area of my blood clot (portal/splenic vein), blood flow from the spleen is being blocked and is accumulating in my spleen. She says thus far it’s OK (I’m asymptomatic: she was able to feel a part of my spleen but I have no abdominal pain at all) and it’s good I’m on the Coumadin.

 

I’m going to hold off on the SSRI thing for now, just do some research on AI-SSRI-Wellbutrin cocktails, and also thyroid stuff just in case. Maybe if I have a thyroid problem which can be treated, I won’t “need” the SSRI, so I’m going to wait for the results of THAT test at least.

 

 

Oh Amy, did you say you had family in NJ? I thought you’d said they were in NY! My Pack Rat’s family is still in NJ (Ocean  County) so he dragged us there for Thanksgiving...but he also got us a hotel room with a JACUZZI! I had never been in one of those before -- in my nefarious youth, I used to “get wild” in regular swimming pools, lakes and the ocean. Well wow, this sure put a whole new spin on “good clean fun” and taking a bath! I hadn’t taken a bath in decades; it’s almost always been showers. He said he got the room with the jacuzzi because of how fondly I had spoken of my watery past (heh heh) and he figured this would be a good way to try that himself! LOL. If/when we do this again, I’m going to buy bubble bath stuff.

 

And now...gotta go sweep the snow off the deck stairs and my car..... be back later...

AmyIsStrong

WHAT AN AMAZING NOTE FROM OUR LENA.  Doctors who actually listen and talk to you like the intelligent, insightful woman that you are. HOW GREAT IS THAT!!!!

Made my day!
Too busy to write more now. I love my new hair - can't figure out how to get a picture up here but i will try.

More tomorrow.

Lena

OK, picking up where I left off kinda....which is WAAAAAY behind....

Was nice to see Chelev pop back in for a moment. If you pop back -- glad to hear you're working again. You're apparently one of those people who seem to thrive on having too much to do! LOL

On the subject of jobs: Titan (and Helen) -- it didn't take breast cancer for me to reach to the point of considering that "a job is just a paycheck, nothing more, and if I didn't need the money, I'd be perfectly happy to stay home and not work at all." I had been feeling that way for several years, ever since I learned this lesson ten years ago:

It doesn't matter what field one works in, what one does or how hardworking and good one is at doing it -- those who lack integrity and/or are willing to be politics-playing phonies are the only ones who are going to "succeed."

Betsy  -- you can put me down on that wretched "hair is growing back slow" list too.  :-( It only JUST got (as in I only noticed it as of last week) so the "longest" part JUST TOUCHES my neck. It's juuust about ALMOST to where that  transitional haircut I got a week or two before starting chemo --  when I had it cut from near waist length to bottom of the neck length; I didn't get the rest buzzed off until a week or so after my first treatment. Which means I still see a stranger when I look in the mirror. :-(  I'm now.. hmmmm...a year and five months PFC and have NOT cut my hair even once. NO trims for me, not any, ever! I mean why would I go and do something stupid like cut my hair when my ONLY complaint about it is that it's TOO F***ING SHORT?! My hair would have to grow two or three more FEET longer than it is now, MINIMUM, before I'd even CONSIDER a trim, and if I did, it would be only to even out the length on the bottom/get rid of split ends.

Oh, and I can't multitask either. I wasn't all that great at it before chemo, so now it's practically impossible. Heck, I still have issues staying focused on a SINGLE task, and that, I DID used to be good at -- expert, in fact.  :-( Betsy, you actually described it perfectly when you said, "I just wish the new me didn't feel like a dumbed-down version of the old me."

Judy -- actually it's my Pack Rat who has the seasonal affective disorder you were referring to. True, I hate winter and the shorter daylight limits certain things for me, mainly anything that would necessitate driving after dark (so I have to be careful to schedule doctor appointments and run errands so I can be back in the house at 4 PM or earlier this time of year), but I've never had depression limited to wintertime -- hey I get it all the time! LOL Whereas the only time my Pack Rat gets depressed IS in the wintertime. But he says it got a lot better when he started taking Vitamin D supplements. He's still not cheerful or particularly ambitious, but he says the lethargy and lack of motivation part of it has significantly improved with the Vitamin D. I take Vitamin D also, started taking it since maybe a couple weeks after starting chemo, but I got horribly depressed anyway. Of course, my Pack Rat doesn't have cancer and hasn't had to take chemo or AIs either....oh well maybe you DO have to accept the size 12s instead of 10s unless you're willing to do tedious torture (i.e., STRICT dieting and/or STRICT exercising). It got too cold for me to keep up the daily walks but I'm still on the diet, which is fairly strict. I'll go for walks again when the weather warms up although by THAT time I'll probably be on maintenance, not weight-loss, when it comes to the diet. Still though, I am now down to just the ONE spare tire around the middle; my 2009 jeans not only fit but are EASY to put on and more COMFORTABLE than they were in 2009 too. Maybe I'll be able to get smaller jeans by summer. I hope.

Geri -- glad you enjoyed your Thanksgiving trip to North Carolina -- and how was your onc appointment today?

Helen -- I hate ANYTHING that involves sticking me with ANY kind of needles, PERIOD. (gosh what a heroin addict I would've made LOL).  THAT was why I agreed to get the port for chemo, and why I was so pissed off at my old cancer center not using my port for all the other needle stuff (the blood draws and scan injections) when I had the kind of port that they COULD use for that stuff. And my old cancer center was ALWAYS taking blood every time I went in: onc wouldn't even see me unless I'd gone to the vampire first. My new onc hasn't yet ordered blood tests for me; most of my blood testing so far has just been INR monitoring for Coumadin dosage (yesterday was the first time they took "real" blood, as in intravenous and fill up a vial; new PCP wanted to test for thyroid issues). Once the Coumadin folks got my blood from the port (the day I had the PET/CT scan) but the normal INR procedure HERE is "new" (new to ME, I mean). Here, they take blood for INR with finger pricks instead of from a vein in your arm). Learned real fast that I hate that too (it hurts not only at sticking time, but usually for hours after, and yesterday's resulted in a nasty bruise on that finger). So I'm going to see if I can arrange to have blood for the INR ALWAYS taken from the port too. IMO it would make sense: I'm required to have INRs once a month, and supposedly also the port should be flushed once a month too. If they don't want to get my INR blood from the port, then I'll be leaning more towards getting the port out. OK, how's the physical rehab and all going for you? Glad you enjoyed Harvard. I gotta look up exactly where Harvard/Boston is in relation to where I am, but NH does share a border with MA. I know I'm NORTH of Boston, but not how FAR north, or east or west. Gotta ask Google, for curiosity. Not that I plan to be driving in Boston, mind you, but I should still know where it IS.....

OK gotta go eat dinner. Will try to finish the "catchup" later or tomorrow.... 

inthemoment

Lena - you couldn't have made my day any brighter than to hear from you AND to hear your wonderful story of all the docs and "almost-docs" who really listen to you and are part of a team with YOU at the center of the team...I am just soooo happy for you (yes, that's a tear in my eye).

I am emotionally spent tonight, but I had to let my April sisters know my liver function tests are NORMAL..that's right...NORMAL!!!!  I had my appointment today, and by the way, I am so happy I switched oncs - she actually gave me a hug when she told me no scans, no ultrasounds, back on the Arimidex (well, that's another story - I was kind of enjoying my little three week vacation from the "little white pill"), but I am thrilled, relieved, thankful and can get a good night sleep tonight!

I will be back soon to write to everyone individually, but you are the first to know about today's appointment!

Geri

Titan

Lena..regression!! WOO HOO!  YES YES YES YES!  (almost as good as an orgasm) HEH HEH!

Lena

Well Titan, in the Stage IV area we sometimes refer to regression as "having an affair with Reggie," so it's OK you came up with the orgasm comment! LOL

JudyNaomi

Hi all, so nice to see so many of us checking in.

Lena - your post has made me so happy. I am so pleased tha you have found good doctors who listen to you, that is just so important. It makes such a difference when they actually relate to us as intelligent human beings. And regression! Good news! You have really brought a smile to my face! My hair has been coming in quite fast since I had it straightened. I have also been taking Biotin and I actually think it has helped. I did find though that cutting it regularly made it come in stronger and faster. I have no idea why though. I am trying to come to terms with being a size 12 (i know...that should be my worst problem). I am finding that I am buying 12 pants and having the waist taken in because they are loose there, but I need the bigger size to get over the hips. I do excercise and watch what I eat, but am finding myself hungry in this cold weather. I try not to obsess about it.

Geri - I am doing the happy dance for you here! SO pleased that your results are normal and that you could rest easy last night. You must be so relieved!

Amy - looking forward to seeing your new hairdo!

Titan - Love that you always make me smile. How are all your Holiday and wedding preparations going?

Helen - hope you are ok and rested up from your trip.

I am ok on the whole. This week seems to be flying by and Winter Break is in sight which makes me very happy. Even though we will be busy, I look forward to not having to do all the "routine" things and I have already given everyone the heads up that we will all be using our cooking skills to prepare meals over the Holiday - that way, we all get a break.

I am working this morning and leaving early today to run some errands, so I must finish up here.

It has been so nice to see so much on the board this last day or two.

Sending you all hugs! Stay warm and take good care, Judy xxx

Lena

Hi again...

Yeah, it's definitely winter now. Highs in the 20s, lows in single digits, and snow has started. Not a LOT of snow YET -- so far two dustings, then 3 inches yesterday. It's snowing right now but light, it looks like we'll get only a dusting or maybe an inch at most. I can deal with it being winter now because I'm ready in general, and, I'm currently luxuriating in the fact that I don't HAVE TO drive anywhere till the 29th. I have plenty to eat (boy will I have a lot of laundry to do by then but I'll still have clothes!), but OK. Yes, I am so well stocked up on food I can go WAY past a week and not run out of anything except milk, eggs or fresh fruit/salad stuff -- at all times, not JUST winter. At the moment I probably have about 4-5 months of canned and dry foods in reserve (plus the stuff in the freezer). I've been told, and now I see it for myself, how my "survivalist" ways will serve me well up here. My ex used to rib me for them, but my Pack Rat told me it was a good trait to have even when I was in NJ and he even said the more I did the better! LOL well he IS a Pack Rat...Come to think of it, that got me through chemo too when I had no energy to go to the supermarket. I have been brushing the snow off the car though so if/when the snow gets worse I won't end up with a serious excavation and ice scraping job when the time comes I do have to drive someplace.

I may have improved on the driving thing up here, but it only took one drive up to Dartmouth in the rain to find out that my driving phobia has abated only when the weather is GOOD. But oh well, I'm still just as bad as I ever was when the weather is nasty. Thankfully, if I run out of milk or eggs I don't have to drive since there's a "little store" a 5 minute walk from here. The "little store" in NJ was 10-15 mins to walk.

Wish I could say I'm done adjusting by now, but I'm not yet. I'm only just a little bit less dazed is all. Even the GOOD changes, like the doctors up here (yup OMG what a shocking surprise)....well actually so far ALL the changes have actually been good, so I don't know what my frickin' problem is. Yes, it was physically a lot of work to pack up/get out of the old place, then all the unpacking and setting up when I got here and some of the technical problems, but for an interstate move it went very smoothly (NOTHING got lost or broken) and difficult setups is just "shit happens to everybody when they move" stuff, and, NONE of the change is actually BAD! I mean think about it:

1. This house and the neighborhood it's in is not only a MILLION times NICER than where I was (and what I ever thought I'd have), it's also easier to live here in most ways, and trade-offs equal out, so it's totally an ultimate win. An example on the "trade-off" thing: Here I have to go out to a laundromat now instead of having washers and dryers in the building, BUT, I don't have that awful four flights of stairs to get to and from the basement laundry room anymore. Another example: the best of the supermarkets here is almost ten miles away in the next town over -- a 10-15 minute drive -- but it's MUCH better than the one I used to go to (which ALSO took 10-15 mins to get to even though it was only 2 miles away, cause of the horrific amount of traffic which doesn't exist here). And, here, when I get the groceries home I can be parked right in front of the house, set the door to stay open while I bring the stuff in, and only have the two steps up on to the deck. At the old place, not only could I end up parked 2 blocks away and having to unload first into my "old lady" cart and drag that to the apartment building, then make several trips up and down 3 flights of stairs lugging as much as I could stand to carry while fighting with the big heavy front door. That really sucked. I don't miss it at ALL!

2. I live only 20 mins away from my Pack Rat now. 

3. Yes, I now have GOOD DOCTORS. 

So I don't know what my problem is already -- it's been 2+ months now and I'm 98% done with setup stuff. The only stuff left to do is get the living room bookshelf for all the videotapes and DVDs, and rest of the books to be shelved, then all the tribbles, rats, coprolites, flasks and other weirdo stuff distributed around the place. And get THIS pattern: the more I got done, the more displaced I felt! Shouldn't it have been the other way around, that is, the more I got done, the more the place becomes "home"?

OK on to other stuff...

Geri -- I'm so happy your test results were good!!  :-)  Oh, and about your nails -- just gotta mention the one and only time I got my nails "done" (I did it for maybe a month and a half, then had 'em taken off and stopped cause it was too much time consuming and expensive maintenance) -- I got orange nail polish and little biohazard symbols painted on them.  ;-) My natural nails were always kind of yucky but other than seeming a little more brittle, I don't know if chemo or AIs messed 'em up or not.

Amy -- how did the makeover go -- are you happy with it?

Judy -- congrats on getting your hair straightened. Chelev mentioned the Brazilian thing awhile back and I actually looked into it -- there were lots of beauty salons where I used to live (four or five within walking distance of my old apt), and yeah, one of them DID do the Brazilian thing, only it was way too expensive. Generally speaking most things are cheaper up here, but I have no idea where the beauty salons are! Actually, all I REALLY "have to" do to get straighter hair is what I'm doing anyway -- let it GROW. My hair has a natural wave to it -- when it's short, the wave is so extreme it makes my hair LOOK curly even it's really wavy not curly -- but the longer it gets, the straighter it looks. At its longest, it only looked SLIGHTLY wavy, which was actually PRETTY. And part of the reason why I hate how I look with short hair is because IMO the curly look doesn't work with my face, and also for me, the shorter my hair, the more I think I look like an old lady (with the sole exception of one of the earlier parts of this transition when I looked like an ugly BOY!). But maybe I'm getting impatient when I hear of a way (the Brazilian thing) to make my hair straighter NOW instead of the 5+ years I'll have to wait till it's long enough to naturally pull down the excess wave so as to make it "just right." Perhaps in the spring I'll find out where the beauty parlors are (I haven't yet seen so much as a barber shop!), and investigate more on this...

OK well, I think I'm done with the ketchup now....see you all next time. :-) 

JudyNaomi

Lena, thanks for your last posting, I so enjoy reading how you are doing. I am sure that you still feel a little displaced, but I am sure it will soon feel like home. From what you write, it certainly seems that you made the right choice.

About my hair - I actually looked for a recommendation from a friend, I didn't want to go to a salon. A stylist did it for me at her home and yes - it was very expensive, but I feel so crap about myself and my image, that I wanted my hair to look good. I loved my hair before BC and found losing it very hard. I am not sure what I will do when it grows out, I will wait and see.

Snowing here in MD today! Hugs to all and stay warm, Judy x

Lena

Well, Judy ...no choice like that for me: I'm going to have to go to a salon, if I can find one up here which does that AND if have money to spend on such a thing once I find one. I only had one friend in NJ (well two if you count her husband) and she LIKED her hair short and wavy/curly anyway. Up here I only have my Pack Rat, who HAS long straight hair ( :::::sigh:::: he's so beautiful! I actually feel embarrrassed for him having to be seen with me now when we go out) and doesn't need or know about ANY hair stylists, expensive or otherwise.

 

Amy, I forgot something I wanted to comment on -- the phone call with your mother where you told her you knew you didn't get your cancer from overexposure to cleaning products -- ME NEITHER!!  ROFLMAO!

 

But maybe now I can get a NEW cancer from that, though....which is kind of another part of how I bit off more than I could chew with this house. A bigger home means there's more to clean. It's pretty exhausting, even though the ONLY housework I do more than once a week is taking out the garbage and washing dishes (plus counters/stove/microwave as needed). Floor sweeping and carpet vacuuming I only do once a week; bathroom appliances every OTHER week, and mopping bathroom and kitchen floors once a month. And all that is not only more space to clean here, but in the old apartment, dishes, trash and laundry were the ONLY cleaning chores I did regularly (after a few years of personal grossout contests anyway): bathroom appliances only if I was expecting company;  floors and anything else only once or twice a year), so by comparison, even though I still don't THINK I spend MANIAC amounts of time cleaning here (including occasional days I skip doing dishes), it's true that I do more cleaning here than I did in the old apartment.

 

I don't know how to explain this: youth maybe? When I originally moved into my old apartment (age 24), yes it was given to me spic and span clean, but I couldn't be bothered to KEEP it that way. I was lucky I didn't end up with cockroaches in fact, I was such a slob. I just didn't care in the slightest. By the time I would even NOTICE it was getting messy and dirty, I was looking at a whole weekend spent doing nothing but cleaning, and most of the time I'd just let it go for a few more weeks or even months because I wasn't willing to give up two days to take care of it. And then it came to the point where, with my sick sense of humor, I thought it was FUNNY to be such a slob and regale coworkers, classmates and others with all the gross stories I could wring out of it, and there were lots...the Orange Mold story being the funniest IMO. My listeners would be making faces, grimacing and shrieking "Ewwwwwww!" and I got such a charge out of it. I even STILL have an Internet buddy who asked me how many Brillos was the bathtub when I moved out (I had an actual formal rating system to describe how dirty my bathtub was, i.e., how many Brillos it would take to clean it!).

 

So on the average, every five years I would do a Grand Purge (get rid of stuff I didn't use, clean the whole apartment as best I could)...Once, for awhile, I decided even though I didn't like TO clean, I did like CLEAN, and thought maybe if I'd clean up after myself right away, maybe it wouldn't get so bad I'd have to be spending all my spare time for several days cleaning. The longest attempt at "reform" lasted for about 10 months, then I was back to my old slobby self . "Hello. My name is Lena, and I'm a Slobaholic."  (hey, I'd be able to teach Oscar Madison how to be a slob -- he was NOTHING compared to me!).

 

After I had my stroke, though, I was not physically able to clean as thoroughly as I had in past Purges, and the Purge-to-Purge interval got longer and longer, and so I was almost totally back to the Old Ways (only getting progressively more too old and tired to have those little grossout contests with myself, purposely seeing how long I could go without doing a certain cleaning thing, and getting off on it). Sometimes I'd look around and think how I wanted the place to be cleaner but knew I didn’t have the physical horsepower anymore. Time went by, the place deteriorated even more...a few years went by, and finally I was beginning to approach the financial ability to hire someone to clean it and maybe have someone come in once every other month to do the heavy stuff. I had made a mental note to look into it, a couple days go by -- yes DAYS, ISYN -- and I get laid off from my job.

 

So much for that idea. And then I got breast cancer. Obviously, no WAY did I get it from cleaning fluids!

 

Well anyway with this place I decided not to let it GET bad in the first place. So I don’t need the kind of overdrive/physical horsepower/elbow grease I would in the old place, but the new place is at least 3x bigger than the old one was, so there’s more to clean and it’s pretty tiring to do it anyway. But since I’m succeeding with the upkeep so far, I think that may also explain some of my feelings of displacement living here: This CAN’T be MY house, because it’s WAY TOO EFFIN’ CLEAN!!! ROFLMAO!

 

Well laundry's almost done (using laundromat's free WIFI today)....so see you all next time. Be happy and feel as well as you can!