Starting Chemo April 2009

Ok..my friends..I was lying...I'm not good....I'm in a funk right now..not sure why????  I keep telling myself that I feel good, I have a nice home, job, kids, friends..what in the heck am I so freaking depresed about?  I don't know?  I keep track of how many weeks it has been since my last chemo,..I look on my calendar for when my next onc. appt. is...I read on here about all of you and I'm so happy that we are all getting better..it thrills me...and Lena..wow...talk about all the red tape you have to go through just to move...!  Well..you do it girl...it is none of my business (not at all)..but maybe...couldn't you live with your PR?   Wouldn't that be easier..plus you can "do it" all the time...well..like I said it's none of my business and you would have to come over to Ohio to shut me up....and I would drive from Ohio to New Hampshire to see you..I have never been to New Hampshire...maybe it is time! 

You know..I've been looking at pictures of myself "before"..all along I was thinking ok..this is the "new me"....now I think I want to look like that again..I don't know if I can...so freaking innocent looking before....

Well, my bc friends, the Herceptin nightmare is OVER!!!  Today, July 14, 2010 at 12:24 PM, the beep on the infusion pump signaled the end of the 15 months of chemo/Herceptin that I have been through.  I will, of course, miss dreadfully the weekly trip to the onc's office, the neatly filled in box on the calendar weekly to indicate my next infusion date (I really looked like I had a friggin social life to see all that writing .  My daughter came with me today for the treatment - she came for the first and wanted to be there for the last, which was very touching.

At the last minute I decided that, despite being upset with my chemo nurse for her insensitivity for making me wait last week to find out if she or I were correct as to my last dose (of course, you know I was right), I brought the card and small gift I had gotten for her a few weeks ago.  When my daughter and I were getting ready to leave, she said "I have a little gift for you". I said "oh, I have something for you too" (at which point my daughter, under her breath, said...see, aren't you glad you weren't spiteful and not given her her present, and she gets you one?).  Well, what she got for me was two really pretty and fancy Martini glasses, which she said she wanted me to have so I could toast with a Herceptini...wasn't that sweet..it just showed she had put thought into it, and whether it was guilt or not, I don't think she will ever leave someone hanging like that again, and that's the best thought...that someone else won't go through that anxiety. 

Then she tells me "sit down, I have something to tell you" - do I need to say how my blood pressure went through the roof with THAT statement?  She proceeded to tell me, "tomorrow is my last day...I must have looked shocked, because she suddenly burst into tears, grabbed me in a bear hug, and said I'm so glad that I was here for your last treatment, you are such a wonderful woman, you are so brave...etc etc (too embarrassing for me to go on).  After I peeled her off me, actually with a few tears of my own - even my daughter was sniffling, I left and thought, hmmm..this is a day to remember!

So, next week I return for my follow-up with the onc, find out what tests he will order now, and begin my search to find a new onc that I can actually relate to.  I will not cut this one loose until I have found a new one, and I plan to interview a few.

Lena - I have a pretty clear schedule in September, and Amy could drive up to my house (along with Betsy, Titan, Chelev, Alaina, Judy and Helen) and we could take a short trip to the Garden State.  You never did tell me what town you're in. Have I put you over the edge with that thought? LOL

As far as the medicaid thing, I get a lot of people who need homecare who move to NY from another state, and all I need to provide services to them is a letter from their "home state" saying that they will cover them until New York picks them up.  I know each state is different, but it may not be as difficult as it seems - let's hope not.

Geri, so glad you are finished with the tx and I'm so pleased that the day went well. It's nice that your daughter was with  you too. So, how far is Orange County, NY from Toronto?

GERI!!!!! {{{{{{{{{{GERI}}}}}}}}}}}



Congratulations and Praise Ratness! ALL DONE!!!! WOO-HOO!!!!!!!!



I hope you drank your Herceptini in one of the glasses you got as a present from your chemo nurse. That was so cool! Did you do a cartwheel? Oh, and if you get your filthy car to my street or thereabouts on a day of 80 degrees or higher with a sky opening flash flooding pounding DOWNPOUR like the ones I washed my own cars in, I'll be happy to wash it for you...



Titan -- Of course you don't have to lie to us if you're blue....hey, do you think looking at those old pictures might have kicked you into some kind of Melancholy Mourning Mode? I ask because there are certain things I've been trying to avoid because they set me off like that -- they remind me of how it was before BC, and the person I used to be. If I'm home by myself when it happens, it's OK and I'll let myself cry, but it's bad when I'm out because sometimes things catch me by surprise and I get "triggered" and have to hold it in till I get home. Now to answer the question about just crawling into my Pack Rat's Nest in the North-- it literally IS a pack rat nest and the chaos is such that I haven't even been able to do a weekend thing since October because he has to make room for me and excavate the bed! Visiting him -- even when he "cleans up for me" -- is usually best described as going on a camping trip in a combination hardware store/auto mechanic garage/computer repair shop during Inventory Week. I'm telling you, I call him my Pack Rat because he really IS one! There ought to be a picture of him as the sole definition of the word Chaos. So, while maybe we MIGHT end up living together at some point, and I'm sure he wouldn't toss me out on the street if I had nowhere to go, it's really a better idea if I can rent an apartment of my own -- for both our sakes. Nope, I don't mind this; while I never LIKED the fact of the LONG DISTANCE aspect of our relationship, the idea of us having our own places I do like -- even though I no longer want to be TOTALLY alone, there are also things I really love about living by myself too (and I think he does as well). I would just prefer it if I lived 20 minutes (give or take) from him instead of 6-8 HOURS from him if you know what I mean -- so that's why I gotta move up there to accomplish this. And I know, I probably don't make a lot of sense...but OK...and yes, I hate that I got chubby too...which is why I went on a diet! LOL!



Judy -- hear, hear! My hair is also still way too short for my liking, but I actually noticed some growth yesterday! (I try not to watch it too carefully because even before chemo, it always grew slowly so I know I'll get depressed if I look at it carefully day after day and not notice any growth). In the back, some of it touches the top of my neck now. I call its current state (as of the last couple of weeks actually) the "electric socket stage" because not only does it look like I stuck my finger in an electric socket, but (at least for the time being) I have to CULTIVATE that look by deliberately mussing it up wild after I comb it! When my hair was pre-chemo long, it was "slightly wavy," but now that I don't have the weight of almost waist-length pulling down on it to mostly straighten it so it's only a LITTLE wavy, it's EXTREMELY wavy! :-O And if I don't muss it, it's very close to my head and IMO makes me look like an old lady. So I muss it up. That makes me look like I stuck my finger in the electric socket (hence my name for this stage of my hair regrowth), but a little less old ladyish. Anyway...I'm glad I can resist chocolate -- easily! The only times I found chocolate irresistible were sometimes when I was having my period. Now that I don't menstruate anymore, I don't get ANY hankerings for chocolate! Oh, and when/where will you be going on vacation?



Amy -- Like I said, don't mistake nervous anxiety for positive energy, although something MAY actually go RIGHT for a change (more momentarily). Well, anyway, I never in my life thought I'd actually think exercise was cool or understand why anyone would do it or could enjoy it, but I loved reading about you talking about your workouts and how you stick with them, and that makes me start to look forward to resuming my walking on Monday and remembering how proud of myself I was getting for going for a walk every single day and working myself up to 2+ miles per day (until my right leg/knee area mysteriously gave out on me). But yeah, if you're having pain and soreness, maybe a LITTLE resting it would do some good (ask your trainer about it: I bet he's versed enough about sports/exercise injuries) because if you injure yourself, I can assure you, you are REALLY gonna be hurting! This is the first week in almost a month that my leg is pain free, and I was housebound for pushing two weeks because it hurt so bad and I was afraid of falling down the stairs because I couldn't walk properly because of severe pain. Which is also why, even though NOW the pain is all gone and I think my leg was finally healed as of this past weekend, I decided to give it one week just to "make sure" it's OK -- so that's why this is my last "sit on my ass" week and I start my walking again on Monday.



Helen -- Forgive me if I'm asking an ignoramus question, but how come going for a business lunch means you have to eat fattening stuff? True, you can't actually count calories in most restaurant food, but, well, don't you like salad, and don't most restaurants have salad? I call myself an ignoramus on this because not only do I not know your food preferences, but I've never been on a business lunch and don't know the etiquette. On extremely rare occasions I'd go out for lunch with coworkers but those were informal work-buddy things and someone in the department's birthday so we took him/her out to lunch things... Anyway -- never mind, what's done is done, if you "blew it" today you can start fresh tomorrow.



Betsy -- How's living out of the utility room going? Oh, is the term "utility room" synonymous with "basement" or "cellar"? If not, you'll have to describe a utility room for me. LOL I know, I'm so socially retarded! And yes, add me to your list of people with sleep issues since chemo. For the time being, I'm taking 1.5 mg of melatonin and a 3 mg Lunesta tablet just before bedtime (I like anything between 10:30 and midnight as a bedtime, and consider 7-8 AM a good wakeup time), and it's MOSTLY working. This is to say that I only wake up ONCE in the middle of the night, not 2, 3 or 4 times like before; that, or occasionally now I actually do sleep through the night, but I wake up for the day too early (like between 5:30-6 AM).



CHELEV -- Where are you? How are you?



OK now I breathe a MAJOR sigh of relief!!! WHEWWWW!!!! After the past four days spending anywhere from 1-4 hours a day making myself nuts trying to figure out the starting point of the medical transition (i.e., Medicaid issues, how to become a patient at the Norris Cotton Cancer Center) while I have this combination of residual chemo brain, Aromasin fog and clinical depression screwing up my ability to think straight, it turns out:

I had TOTALLY FORGOTTEN about MEDICARE -- I mistakenly thought I wasn't going to be eligible for it until I had been receiving SS Disabilty for TWO years, not ONE!!!! That's why I thought I'd have to get NH Medicaid if I left NJ, since I've only been receiving the disability checks for one year, not two. (Eeeeesh!) Soooo:



My MEDICARE coverage (since I'm on SS Disability) is going to kick in just in the nick of time! It goes into effect on 11/1/10! (Theoretically, that would be the day I move into my NH apartment.) I got the Medicare card in the mail yesterday, but spent all morning making myself crazy because I couldn't figure out where or how I'd get prescription drug coverage (I saw I had hospitalization and doctor's office -- Medicare parts A and B, on my card, but no part D for the prescription plan, so I was afraid of not being able to afford medication). Well in the midst of this morning's mad researching trying to figure out the Medicare Advantage Plans, I had also called and left messages with "my" social worker at my present cancer center, plus someone at Dartmouth. All I have to do now is relax for awhile and:



1. Just WAIT for MEDICARE to send me all the information on Part D, plus,

2. Ask my oncologist to call in or fax a REFERRAL to the Norris Cotton Cancer Center's Comprehensive Breast Program. My next appoinment with my oncologist is next Thursday. I'll be able to have a joke with him that he can be rid of me at last, if he'll only just "call this number, please." LOL




So now I shall go turn my attention over to my simmies, and the upcoming Grand Purge.



Be well, and catchya all next time.



~Lena.

Hi all, just passing through quickly today - we have company over the weekend, so I have quite a lot to do today. It is just so HOT in the kitchen!!!

Lena - as always, loved reading your post. Titan - thanks for the update on Chelev and how are you feeling today? Amy, Helen and Betsy, hope you are all doing well.

Alaina - how is your aunt doing?

Geri - hope you are still celebrating!!!

And to anyone, not personally mentioned, sending everyone (((HUGS))) for the weekend and I will come by again soon. Judy x

Lena - I sent you a PM (private message). Did you receive it?

Amy

Good morning -- just a brief check-in before I go to the supermarket. Yes, Amy, I got your PM. I copied it and will reply to it with an email of my own later today (when I have time to write).

Titan -- Even though I don't have anywhere near as big a collection of old pictures as everyone else, I do have a few, and yes, looking at them a few weeks ago (while straightening up in my file cabinet) was one of the things that triggered off one of my tearful episodes. So yeah, that's why I suggested that, Dunno what to suggest about your daughter's "request" concerning your hair, because I'm sure my opinion would be the wrong thing to say since, not having been a parent myself, I'm clueless, and I don't want to risk making you feel any worse than you already do! 

OK, gotta go to the supermarket before it gets too hot. Later!

~Lena. 

Good morning all... Had a extremely busy week at work and home is anything but normal.

Sorry for the late congrats...BUT CLINK CLINK (tonight anyway) TO GERI!!! I am so happy for you.

Lena- our utility room, as I called it, is really just a laundry room with a washer & dryer and a folding table. No sh-lopping baskets up and down stairs to the laundry room. It's one of the main reasons we bought this house...it is so convenient. Now it's our kitchen too..double duty. Thankfully the weather here (which has been more like winter) has finally turned. Although today it's cold and cloudy again. Now our house has zero heat retention cause the ceiling is gone so we feel it even more. The night temp is in the 50's but with night sweats...I don't really mind it much. I cooked outside on Wednesday night, it worked out ok. I think this weekend we are going to rearrange "the kitchen".

I've also been trying to lose weight. I use a modified South Beach Diet. Mostly because I like the recipes in the book and it makes sense to me. Prior to chemo my dh & I went to a nutrition and cancer class. They recommend a Mediterranean diet as part of the cancer healing process. That's what we've been trying to stick with...unfortunately I don't seem to be losing much weight. I think I'm fighting the Tamox. but at least I'm not gaining. I guess that's positive. I think we all need to keep supporting each other on this front. Exercise and portion control...my new mantra. I think I'm doing ok on the portion control...but I really need to step up on the exercise front.

Yesterday, I got really down too. Mostly because of work. We has an assessment deadline, mandatory state deadline, and the stories as to why people couldn't pay...it was just so sad. I had at least three attorney's cry or tear up on me. I was on the telephone with a guy  for a half and hour who's wife had stage 4 colon cancer, MS and many many complications. They had to drive 5 hours for her surgery/treatments. Of course his practice is falling apart he has no time to focus on it, he is the primary caregiver. He wanted to just talk. It just made me so depressed and sad. I think I look at things so differently now. This week, I realized how stressed I was by the very nature of my job. We were very short staffed this assessment cycle. Three out of five people in my dept. were gone. But my boss is coming back from his sabbatical (3 mos) and next Thurs. one of the staff members will return. Then work life should get back to normal. But I feel very very tired. Too much going on right now. .

Have fun, Geri! You have totally EARNED THIS!

Hi all, hope you are all having a good weekend. Ours has been fun and I think the oven may have been on for a straight 2 days! The kitchen was unbearable, I did try my best to get out of it, but it was worth all the hard work. We had lots of fun yesterday with good friends. As long as we stayed indoors in the aircon of course. In the evening, my husband and I took a walk over to friends and the heat was so intense! Anyway, all in all, a good weekend and a good feeling to be where I am this year. I find that I say that so much, but I just keep on thinking about it all the time. I keep on comparing where I was last year and where I am this year and the kids also keep on saying that this summer is so much better than last. I am not sure that they will ever get their old Mum back, they may have to settle for the new one, but I think that in time, they will get used to my limitations. Now, I just need to (LOL)!

Lena - I wish that being a parent meant that I know what to say and do, but I get it wrong a lot of the time. We just try our best I suppose.

Betsy - I am trying to be a little less obsessive about my weight now and also concentrating on excercise and portion control. I think that if I aim too high, I will come crashing down and then console myself with food : )

Geri - hope you had fun celebrating!!!

Hugs to everyone for a good Sunday! Judy xxx

It's been really hot here as well .... every day seems to be over 90 F (mid 30's C) and humid. It's not at all comfortable.

I just read my posting and saw that it was all very negative!

So, I am still trying to count my blessings, even though it is challenging for me.

I also don't think you are being negative. This bc is something that stays with us forever one way or another. I was just kidding myself when I had it the first time and thought it was over. This is a safe place to complain. I don't cook much anymore and while I'm not wanting to make 3 meals a day, I wouldn't mind a couple of times a week because it gets very lonely to have dinner alone every single night. Although tomorrow my newlyweds are coming over for dinner along with #3 son who heard that I'll bar-b-que steaks. (even though he lives with me he does his own thing every night)

I have to admit that I rarely eat beef. The only reason I'm doing steak is (1) my sons like it and (2) it's easy to make on the bar-b-que. There is a place called "The Healthy Butcher" in my neighbourhood that sells hormone free, grass fed beef (everything there is either organic or almost organic). Since I only cook for the family about once a month, I figure I can handle the cost. Otherwise, it would be impossible.