A teary and embarrassing moment - need hugs! And chocolate!

[chrisy]

Oh I feel like such a freakin idiot! So I'd like to invite you all to my little pity party. Please bring gifts of love and understanding and of course, chocolate is always appreciated as well!

I hit what I think is a minor bump in the road this morning and just lost it...

I went in for my T-DM1 treatment this morning and was not able to be treated because my AST was too high. Not as high as it HAS been since I've been on this trial, but too high on infusion day to get the infusion. So I've been pushed back a week (assuming I'm good to go next week). They told me this has happened to some of the other patients in this trial, too.

So of course, I just started weeping uncontrollably right there in the doctor's office in front of the trial coordinator and the NP! And I had NO good reason for crying at all, unless being a blubbering idiot is a good reason.

So there I am crying and there they are staring at me and trying to figure out WHY I'm crying so they can make me stop (I mean that in a good way, I'm sure they wanted to make me feel better!) so I start apologizing and they start apologizing until it sounded like Bill's apology thread. And I'm thinking, hey now I have another most embarrassing moment...

Then they're quizzing me like TSA: "did you have any tylenol? Percoset? did you accept anything from a stranger?" "no, no, I say, only a big bag of buttered popcorn and gigantic diet coke at the movies - oh, and I LOOKED at some wine yesterday, do you think that is it???"

And I still don't know WHY I was crying! Other than getting all psyched up for my miracle drug and being denied...and now having to redo all my schedules after I wrote down all those appointments in INK. Or maybe its the trying to hold my sanity together while dancing barefoot on the edge of a knife!

Maybe next week when I go back, I'll dig up my old redheaded wig and wear that so they won't recognize me...

Now that you've all got chocolate, I wish you all the good cancer fighting polyphenols you can consume, all the hugs you can handle, and all the love you deserve...

Thanks for listening!

[SoCalGal]

I'm sorry for such a disappointing day. I just ate about 40 Jr Mints on your behalf. Tomorrow is my drip day and I am anxious and in a bad mood. Come visit me. No one lives here anymore. I have 2 extra bedrooms. All teenagers gone for another week. We can shop and eat chocolate.
xxoo Flori

[harrie]

Chrissy, I will eat a truffle tomorrow in honor of You! Rough day, huh...I feel for you but just had to smile too just reading what you wrote!
Hugs,
Maryanne

[sarah]

Hello crissy,
I'll be eating chocolate for you. We've all shed our tears in public and private. After being told I was cured, I had a relapse and when I was told it was now invasive I burst into tears in the surgeon's office, cried my way through the hospital and luckily my husband was with me and drove us home. I think I cried for a few days.
big hugs, lots of chocolate and love
sarah
ps my husband and I made a documentary on the history of chocolate! Vive le chocolat!

[Faith in Him]

Hey Chrisy,

Sending love and hugs your way. We totally understand your little meltdown. I always seem to lose it when the doctors are exceptionally nice to me. Go figure. I'm sure the trial coordinator has seen the whole gamit of emotions. YOU will rally back. You always do.

I will enjoy mini miky ways (my fav.) on your behalf tomorrow. I am tempted to do it now but it is 3:30 in the am. Decadron has me up. Although, chocolate in the wee hours of the morning seem especially rebellious and fun.

I hope you are sleeping well and tomorrow will be a better day.

Hugs,
Tonya

[Mary Jo]

Huge, gentle hugs your way Chrisy! Hey, pity party's are something we all need to have from time to time. http://her2support.org/vbulletin/images/icons/icon7.gif Seriously though, I'm sure the disappointment of having to skip your treatment (you know us control peoplehttp://her2support.org/vbulletin/images/icons/icon14.gif) was a huge let down for you and your emotions just let go.

Sending you my love, prayers for a better day and cyber chocolate.

Mary Jo

[IRENE FROM TAMPA]

but I can truly understand your melt down as I am sure everyone else at your infusion center.

Even through all of your frustration Chrisy, you still maintained your wonderful sense of humor showing what an exception person you are. I had a good laugh (but certainly not at your expense)pls forgive me. It is good that we can still muster up some humor through this all.

You do whatever makes you feel better, and as everyone said, we will help you along with the chocolates.

I am sure your levels will even out and you will get back on track with your treatments.

Meantime, have a wonderful day my friend.

[Sheila]

Chrisy
Now that I've eaten 1# of M&M's, 3 snickers, some chocolate covered cashews and a hot fudge Sunday, I am ready to dry your tears... You had a right to have a meltdown...we have all been there, nothing is more of a hassle than to screw with our cancer schedules....like you, I use ink to write everything in on the mega calendar...how dare they? How dare those liver enzymes throw me off schedule...I have confidence that they will be in order for the next visit....we need to start buying erasable pens...hey, I've saved a few Mint Meltaways to make you feel better.....but you better hurry, I am on a chocolate binge thanks to you!

[Carolyns]

Hi Chrisy,

I want to reply at length but I am headed out the door to work. Sorry that you think that opening the emotional flood gate was a bad thing. I think that your release may have been a bit over due. You are amazing in every way. I love to read all of your postings and replies because your insight and wisdom is written down directly from your spirit. I can only imagine the inspiration that you are to the staff at your treatment center. Oh no, Chrisy cries.... The flood of emotion washed over you like a summer thunder storm. Now the air will smell fresh and the grass will be greener. You will get your treatment in a week. Didn't you just explain to someone else about how this treatment can elevate those numbers?

Please enjoy this week off of treatment like a gift.

It's okay to be human and to show the range of emotion...sometimes we have no choice in the matter. Thank you for sharing this story...it makes it okay to have a melt down...even in public. If you can do it than anyone can.

Love, Hope, Peace,

Carolyn

[Mary Anne in TX]

Chrisy, you're wonderful! Even though you've done your "thing", do you think maybe we could all grab a chocolate, pick a disappointment or trauma, and all come unglued together! I've hung on by a thread for about 10 days now! As I read your story, I realized how very healthy it was for you to just let the emotions flow! I'll just grab another chocolate, some "white out", a box of kleenex, and a little cash (you know, for that something to make me feel better) and go for it!!!
Your honesty is an incredible gift, as are you!
Tons of chocolate and love,
ma

[hutchibk]

I'm on my way Flori - oops, that invite was for Chrisy, huh?

Chrisy - I'm with Sheila and Carolyn here. Just what about your reaction was silly or "for no good reason" - darling, WE all have very good reason to sob uncontrollably until the end of time, but we don't for some unknown reason (because we are truly super-human), and I think the world is really lucky that we choose to eat chocolate instead of that alternative! I have a right mind to come to your house and hug you so tight you almost can't breathe until you stop beating yourself up. So there.

[Joy]

This crap s*cks of course you can cry. Cry anywhere you please! I have cried in the cancer center more times than I can count. When I got my last blood work results with elevated Alk and one liver enzyme a little funky, I cried so hard that the nurse had to go get the doctor again (I'd just seen her and it was her birthday) to come talk down the jumper. Meanwhile we were having tornados in the area and a tornadao warning and a city imposed lock down and could not leave the building. The had put all the infusion patients in the hallways away from windows and there I was sitting and balling, I mean sobbing, right next to the windows. They had to move me to a private room all by myself 'cause I was such a mess. Everyone thought I was worried about the weather, which I was somewhat oblivious to and we were having TORNADOS!

Anyway, cry and yell and keep making us laugh, cause you are freakin' hilarious despite it all. Your body is tough and you have time to get the levels down and continue. I will pray to the laboratory Gods for good bloodwork as hard as I can. And I had two miniature Dove/vanilla ice cream bars last night and even though I rarely eat sweet things-they were just what I needed. Now I realize they were just what we all needed. Isn't is great when you find out how altruistic you can be and not even know it at the time:)

I LOVE YOU!

[Terri B]

Chrisy,

If it makes you feel any better, I freaked out in the MRI machine and had to be taken out to the hall and given chill pills. I cried like a big fat baby. I have been through NOTHING like you ladies have!!

Tears only re-charge your battery. Let them flow!

[PinkGirl]

Hey Chrisy
If this had happened to someone else, you would be the
first one to jump in and remind them of all the crap we've
endured, all the highs and lows of this adventure and what
emotional messes we can be at times. You know why you
had the mini melt down - it's the pits to have a treatment
canceled after you're totally psyched for it.

Please know that you have a standing order for me to eat
chocolate on your behalf. Don't worry about wearing a
disguise next week - it was good for you to cry and it was
also good for the docs and nurses to see this - you helped
them understand what having a treatment canceled can do
to us. Onward and upward Chrisy ...........

[Ruth]

Oh Chrisy

You deserve a crying day for goodness sakes! I'm drinking my favorite Mocha Grande skinny just for you....yummy.

I had a moment like that when I was getting an infusion. I always sat in the common area and talked to everyone over a private room just so the time would go faster and meet all these great folks. Plus my now ex-hubby gave up on going with me to chemo so I was usually alone. Well, I was getting my Taxol and I realized that it was the exact same date that my best friend Cheri died of rare form of cancer (adrenal cortical carcinoma) at the too young age of 32. I seemed to be in the middle of a sentence and just starting howling. No-one knew what was going on and I couldn't get it out to tell anyone. Here I was in my 30's too, getting same type of chemo (Taxol) and just feeling so very, very sorry for myself. Which I had every right too! I ended up taking my pole and finding a private room and calling another good buddy from childhood who told me all the funny jokes she could think of. Plus I admit it was fun to listen to her rant and rave on what a sorry husband I had to be there by myself.

Chrisy, you are such a special, funny, sweet lady and I LOVE reading your posts. Everyone in the office probably wanted to take your tears away! We all deserve a good cry day and it truly feels good afterwards.

Hugs ~ Ruth

[DonnaD]

Chrisy,
Loren and I are off to ASCO on Friday. We will be sure to get lots of Genentech cookies and eat them for you. I will also look for an erasable pen for you (I still have my pen on a string from SABCS).

Seriously, so many of us understand and can say we have been there. The first time my treatment was canceled because of counts I got really mad at the Dr. Loren had to calmed me down. Yep, even down to the calendar upset me.

Keep your chin up. Prayers are coming your way so next week will go without a hitch.
Donna

[Gerri]

Oh Chrisy,

Tears are cleansing - you had every right to let them flow. You are an amazing warrior and truly a gift and inspiration to all of us here. What a let down to go ready for treatment only to be turned away! Yet, through it all you keep your wonderful sense of humor.

In keeping with the chocolatefest in your honor, I am now going to grab some Rolos from a co-workers desk - oh, and a few Peppermint Patties for good measure. Thank you Chrisy, I needed a reason to break my vow not to touch them.

Much love and chocolate,

[Becky]

After 2 handfuls of peanut M&M's, I just had to respond! Chrisy you are such a special woman. Cry at everything and who the hell cares. If someone even comments with "Buck up little Beaver" you can just give them the finger. I cried once because I was getting a treatment (my second A/C - long story and this is YOUR thread).

Keep your face to the sun (it blinds to you everything else)

Love, love, love

[Colleens_Husband]

Chrisy:

Having tears and a meltdown can actually be a positive mental health experience if you can understand why you came to that point. I don't think you came to the point of tears for no good reason. Ask yourself some probing questions.

Did getting turned down mean fear or frustration to you?

Are you angry, fearful, or frustrated about getting turned down for your medication or is this an accumulation of a lot of fear and frustration that has built up over your whole ordeal?

What does being turned down for the medication in this instance mean emotionally in the long run for you? How is this going to affect your future?

You may find that this episode is a whole lot more than just getting turned down for one medicine. It may be that you are buried under a mountain of traumatic stress. If it is, then you may wish to consider a visit to a cancer counseling center and they can help you deal with the traumatic stress you have been living under for so long.

Chrisy, please take excellent care of yourself. We are on your side. You will be in our thoughts and prayers.

Lee

[chrisy]

You all are just TOO MUCH!!!!! or maybe just the right amount...I knew I would find solidarity of spirit with all my sisters, and that you would validate (see the value in) the need to just let go at times. They had to bring the doctor in for me, too!

I must say, tho, that I underestimated the degree to which you would all sacrifice yourselves and, as Joy said, altruistically devour all that chocolate on my behalf. I appreciate that some of you didn't have time to get really high quality, worthy chocolate yet you soldiered through with whatever chocolate you could find. "Chrisy needs chocolate NOW and I can't let her down!"

I can't thank you enough, but now I wish I'd thought to buy chocolate futures! I think from now on every time I see a mint meltaway, I'll call it a mint meltdown-away!

Thank you so much for your GENEROUS support!

[chrisy]

Lee and others, you are right, and I know you're right. Having a bump in the road send you off the cliff is, while understandable, not always a good thing! I do find that I feel better after having blown off some of that stress, but I would probably feel even BETTER if I did it in a different way, or under different circumstances.

It's totally not about having to wait another week to be treated! Just like a few months ago, it wasn't really about getting a bad haircut...

By definition, I'd say I have a fair amount of stress in my life dealing with an incurable disease. It's a tough dance for sure, trying to strike the right balance between acceptance and a healthy denial. Refusing to let it get the best of me by trying to maintain a certain sense of normalcy in my life. Trying to maintain a sense of control over what I CAN control (or think I can!). And forgetting that some things just need to be surrendered.

At it's core, my frustration is that I'd really just as soon NOT have cancer. It sucks and I hate it. Oh, and did I mention I HATE IT????

I think, tho, that it would be much more healthy for me if I was better able to experience all those emotions in a more appropriate way - like crying in the shower on alternate Thursdays instead of melting down at random. Ah, there I go again, trying to be a control freak!

Lee, I do have access to counseling for people living with cancer; and I think that's a good recommendation for me at this point.

Thanks for your thoughtful responses, and Lee, the only REAL food enhancer is...chocolate. Stay away from the cheese whiz.

[abitjaded]

Chrisy,

I've been bawling on and off for the last two years!

You are entitled. They really asked if you took something from a stranger? Ummm.. Like what???? A Rolex watch street-rip-off??? Want some candy, little girl?

Maybe we could have some wine for you, too. I sometimes stick a tablespoon or so in a glass and fill it up with water, just to pretend. I hate beer (and the non-alcoholic, yich). Never drank pop. How 'bout an Izzy? The pomegranate kinda looks like fizzy red wine.

Oh, and I think we all need further instructions on the chocolate. What type, specifically would you like us all to indulge in?

Carla

[StephN]

Dear Chris -
I LOVE your "dancing on the edge of a knife with bare feet" analogy. That is often what having cancer feels like and we just have to grin and bear it for the rest of the world!

Looks like you are afraid of losing your balance and not getting treatment was like taking away the little "balance umbrella" the tightrope walkers use.

Off the subject. At the latest Cirque du Soleil the highwire walker crossed it in ballet toe shoes!! Never saw that one before, but I was duly impressed.

About the time and place of the said crying episode. How COULD you know you would not get the wonder drug that day until they came back with your labs?? We are at their mercy and just have to try to keep it together hoping the numbers will be high enough to get treated that day. I had to put off a treatment once and I did not cry, but was quite discombobulated and stressed till the next week. My white count was SO low that I was fainting all the time.

So we react to news as we get it. And we can't always react with poise and grace. It's Ok to lose it once in a while. I know that one of the main concerns of our treatment staffs (especially for stage IV patients) is that we are not becoming a danger to ourselves.

Once I made an offhand comment in clinic that maybe it would be easier to drive off a bridge on the way home, and THAT got their attention. They sent a chaplain in to talk to me, but I really felt she was assessing my state of mind. Of COURSE I did not mean that, but they had no way to know ...

And so it goes. Which is why I keep a white out pen in my desk drawer. I just had to change an appt with my brain doc!

[chrisy]

whoa, Steph! good heads up on the careless use of dark humor as a coping mechanism while in the presence of medical professionals...next time just say it would probably be easier to just go to France - and maybe they will send in a travel agent to counsel you!

And Carla, you know I only want the BEST for you, and all of our Her2support family. That includes really really good chocolate, the darker the better. So good that when you eat it you are incapable of feeling any guilt, only pleasure and a sense of "wow, that was TOTALLY worth it". Everyone's got their favorites of course, but for me M&M's can't quite rise to that standard even though I keep trying!

[StephN]

Oh, and here's a VERY BIG HUG.

And an old French Proverb to tilt things a bit:

"In Water one sees one's own face. In Wine one sees the heart of another."

You DO know what you are missing!

[chrisy]

Look what showed up in my email this morning...sometimes you just have to wait and let the miracles unfold.

Inner Peace

God is the source of my serenity. I am at peace.

At times I may tend to feel discouraged and challenged, yet I can
transform such thoughts and feelings and know a peaceful state of
mind. Letting go of any need to struggle, I allow the peace of God to
fill my senses. I am at peace because God is the source of my
serenity.

In the silence, I dwell in the perfect peace of God. For these moments
in time there is nothing I must think, say, or do. I can just be,
building a consciousness of peace.

As I begin moving from this inner experience out into my day, I bring
this consciousness of serenity with me. In the midst of busy daily
activities, I am serene and at peace.

At any time, I have the ability to make the choice to go within to my
internal wellspring of peace and maintain my sense of calm and
serenity.

"The God of peace be with all of you." -- Romans 15:33

[kareneg]

Dear Chrisy,

I melt down all the time sometimes we need a good cry. You are fighting this with all you have and any setback is going to effect you. Keep up the fight my dear friend and I am game for a pity party anytime. All my love!

[Barbara H.]

HI Chrisy,
I can totally relate to your frustration. I am receiving the same chemo on the weekly trial and have had to skip my infusion a few times because of elevated enzymes. In fact, I doubt that I will be treated tomorrow because last week they were quite high. This is a very common side effect of the drug. Last week my research nurse told me that there is absolutely nothing you can do to bring them down other than skipping a treatment. My feeling is that it is not so bad to skip a treatment because it gives your body a break. In addition, they still do not know what the best dose should be. Higher is not necessarily better. Your oncologist is probably being very careful because if they allow the enzymes to go too high, Genentec can pull you off the trial and there is nothing you can do.

That being said, I can certainly understand why you lost it. This is really a suburb drug when it works. For me, I just hate having to go in weekly. I arrive at 3:30 after school and usually can't leave before 7:30. I have to have those CT scans every six weeks that need to use a vein. I only have one available, it often stings, and I don't want to lose this vein. The weekly scans also make it difficult to take vacations and I will have to commute from NH during the summer. On the positive side I live close to Dana Farber and feel very fortunate to be in this trial. I know I have to continue to see the positive side, but sometimes this whole ordeal stinks. Because I try to stay positive, that seems to be what is expected of me. Nevertheless, it is hard sometimes.
You are in my thoughts. Put that incident behind you, move on and lets just hope that the trial continues to work for you. Don't forget to have some tasty, expensive chocolate.
Best wishes,
Barbara H.

[dhealey]

Chrisy, sorry for your let down of no treatment. Better luck next week. I am eating some york peppermint patties in your honor. I had a melt down today from a bad day at work. I always keep a stash of chocolate hidden in one of my drawers for such an occassion. Hope tomorrow is a better day!

[Bill]

Chrisy, sweetheart, you are such an amazing woman. You know all of us understand. I wish I could have been there to give you a big hug and tell you not to worry, everything's gonna be alright. Like your Sisters have said, just look at it like a little break and you'll be back next week, wearing your red wig and black sunglasses, peeking around corners like a spy (code name:Secret Squirrel) Once in awhile when you are sure someone can hear you, lift your fist to your mouth, gently cough into it, and then whisper into it, "i'm in the building.....roger that." Brings back alot of memories. Thanks for being you, Chrisy. Love ya! Bill

[AbbyDawg]

OK, who on this board has Connections?!?!? This has been one of my favorite threads all year ... and made me think that there HAS to be someone on this board with the $$$ or the Connections to do this free ....

What is the BEST, creamiest, melt-in-your-mouth dark chocolate? And how about if we contact the company and have them make a separate batch of labeled-just-for-us bite sized pieces (er, well, Big-Bite sized!) They could wrap them in pink foil, slap on a pink cancer ribbon, and name them, "Her2 MELTDOWNS."

Some might think we're crazy but only WE would understand they'd be the best medicine yet!!! ..... And I would personally donate my body at risk of infinite peril to be in the original study group for them!!

Honestly, if I weren't so dern sick right now and if cancer hadn't left me on food stamps instead of owning my own company, I would start calling companies today and make this happen!

AbbyDawg

[sassy]

Chrisy,

I feel absolutely HORRIBLE!

Here everyone has been sacrificing all day, eating chocolate on your behalf---and I HAVEN'T HAD ONE TASTE OF CHOCOLATE ALL DAY!

There is an entire cake in my kitchen and I will do my utmost to devour every morsel.

You deserve a good meltdown. Those shoulders of steel need a little rest.

Thanks for continuing to be a source of strength, hope, courage and HUMOR for all of us.

We love you dearly,

[chrisy]

Barbara H. - thanks for the response - I thought I had seen you post that you'd had a couple treatments postponed (or I guess since you go weekly, skipped is the right word). You're right of course about needing to be cautious with the toxicity. My NP and doctor also say there is "nothing you can do", but I reject that! I mean, if they thought there was something I might have done (like down a margarita) to elevate those silly liver enzymes, how can it be that NOTHING would make them go/stay down? I can also relate to the weekly schedule because even though I am not treated every week, I still get to drive 150mi round trip for lab draws, exams and vital signs every week! Does cramp our style, doesn't it!

Debbie and AbbyDawg - yes, we should commission a special her2meltdown chocolate to hide in our desks (and at home) for immediate relief! There are many worthy chocolates out there...but nothing says comfort "food" like a good Frango mint!

Sassy - Whoa, you sure put a whole different spin on that! Guilt tripping over NOT eating chocolate?????Be gentle with yourself, you just didn't know... I'm sure the cake will make everything all better.

WB - do you think I will blow my cover if I can't keep from giggling while skulking around the cancer center in my secret squirrel garb?

I definitely feel better today - thanks everyone. Let's be careful out there - no choco-od's please.

[Bill]

No, Baby, the only thing that might tip them off is if you show up wearing Hersheys smeared on your lips instead of the "Hot-spy Red" that they sell at Walgreens.

[harrie]

Chrisy, just for you...
Today I ate a whole handful of my absolute favorite which is dark choc covered sunflower seeds! Each one is a different color and the shape of each one looks like tear drop! So I ate like 100 colorful chocolate tear drops!
Harriecanarie

[abitjaded]

Mars makes this stuff for Williamsburg. Maybe we could ge SmithKlineGlaxo or someone to hit them up for us.

We went to Williamsburg last month. Had this stuff during my brain met wandering a week before knowing why I could barely remember where the bathrooms were. But even then I could tell it was good. Intense chocolate.

Of course See's Choclates does fundraisers, too. Fifty percent profit. Anyone wanna go door to door for a good cause?

Carla

http://www.williamsburgmarketplace.com/webapp/wcs/stores/servlet/ProductView?storeId=10001&categoryId=15828&ssr=1&catalogId=12114&langId=-1

Carla

[Ruth]

OK everyone ~~~

I went out and got the REAL chocolate today after reading these threads...no more skinny latte's! I got a 200 count, 5 lb 7 oz, huge box of York Dark Chocolate Covered Peppermint Patties from Sam's Club. The kids were jumping for joy but I quickly told them to look and see the little pink breast cancer ribbon on the box for MOMMY!

If I'm lucky they may last the weekend with this crew. Teenage boys just seem to be able to eat, eat, eat, eat and continue to eat.



Hugs ~ Ruth

[Catherine]

Chrisy,

Wow, I do not have any chocolate in the house, but have decided to have a second gin and tonic after reading this long and moving post. I continue to be amazed at the courage and love on this wonderful site. I am so sorry that your treatment was delayed. And I am very proud of you that you had a meltdown. You deserved a meltdown and you did it so spontaneously. Now, I hope and pray that you treatment will get back on track. In the meantime, I will go out and buy some expensive chocolate so that I can better support the team effort.

Hugs, love and chocolate futures to all of you,
Catherine

[Barbara H.]

Hi Chrisy,
Just because they claim there isn't a way to lower the enzymes, I don't totally buy it either. Otherwise, I wouldn't be taking vitamins. Many professionals don't seem to think they are worth much.

I absolutely hate having to go every week. It's also hard how it cuts into a potential extended vacation. I think eventually you may be able to skip some of the blood draws after you have been on the trial for a while. For example, I only have to have the bone scan done every twelve weeks.

I don't miss alcohol much because I was never much of a drinker. However, on a special occasion I would like to enjoy a glass of wine, and it's just another thing that we can't do on this trial.

I think we just have to get down sometimes and vent. I feel guilty when I do, because I feel I need to be grateful that I am on this trial.

Best wishes,
Barbara H.

[chrisy]

I hear you on the "exended vacation" issue. I DID have a scheduled "day off" that fell right in the middle of our planned vacation in August... on the other coast. Now I think it might even be an infusion day.

Of course, even as I whine about that, I pray that I will still be fortunate enough to be on this study in August - and in fact, to the end of the year! We all would do anything and everything to stop this disease but I don't feel guilty about bemoaning the inconvenience to my schedule because the whole reason we are doing this is because we are GREEDY for life and to enjoy it as well.

Today I found out from my trial coordinator that 3 people in the USCF trial had this happen this week, so I guess I'm not alone. I also understand why she just sent me a list of the appointments that need to be scheduled, rescheduled, or cancelled and asked me to do it myself. Trying to deal with all these schedules X 3 would probably make HER have a meltdown...and also be persona non grata with the schedulers.

Maybe we should have an appointment swap meet!

Barbara, thank you so much for your encouragement.

Chris

[chrisy]

Let's not go there with double gin and tonics!

I seem to have become a poster child for chocoholics here on this thread, but at least I've shed my (undeserved) reputation as a lush! I still have never had a chocolate martini, but I love the thought of it! Ha ha everyone probably thought it was because of the 'tini!

All this talk of chocolate, and would you believe I haven't a BITE of it in the house???!!!

Criminal!

[Unregistered]

Best wishes for you to being able to resume the trial soon. I'll think of you when I consume my 72% with cacoa nibs tomorrow.

I wouldn't even give 2nd thoughts to the crying thing. I did my jumper thing with the rads people. I'm sure it's in my "permanent file". Don't know why it happened then. I use to think of myself as strong but one or two valiums helped when I needed it. There is some sort of limit, and we can't totally control when we've reached it.

I'm looking forward to hearing positive news soon. Bev

[abitjaded]

I love "we are greedy for life" Chrisy.

Amen.

Carla

[Soccermom]

Chrisy,
I ate a Baby Ruth in solidarity..BTW, where did Tiptoe and Tex find those FRANGOs' ? I thought they were only from the old Marshall Fields stores in Chicago?
Dont be embarassed, as all the others have stated we are all entitled to a meltdown, now and then!
Big chocolately hugs,Marcia :)

[Barbara H.]

Hi Chrisy,
If this trial is working for you, you may be on it for a long time. There are some patients at the Dana Farber who have been on it for over a year and are doing well. As long as you are doing well they won't take it away from you even if the your trial year is over. They just keep extending it.
Best wishes,
Barbara H.

[BonnieR]

I'm still eating chocolate in solidarity until I get the "all clear". No rush.

[chrisy]

You could tell I have Chicago roots!

That box did come from Chicago, but now that Macy's has moved in :( I can actually get them here, too!:)

[Kim in CA]

Dear Chrisy,

Now I know why I have been having this greater than usual craving for chocolate. I must have been telep-ing that there was a disturbance in the "force" and more chocolate was needed imediately.

You have to let those tears flow whenever and wherever, otherwise we might explode, or is that implode. I find that since cancer, it doesn't take much to make me cry. I have boxes of kleenex everywhere!

Praying your labs get back to normal and you can resume treatment soon.

Big hugs and a big slobery "horsie kiss" from Bailador,

Kim

[chrisy]

Kim, thanks for the sloppy horsey kisses...somehow I think you have found a unique way to provide support!

Now the bummer news...

That darn AST was too high again! Now that may mean I'm DQ-d from the study. I'm so bummed because I know this drug was doing a great number on the cancer and I don't want to "lose" this weapon. The AST is elevates slightly over the study protocol max, not anything close to life threatening, and not as high as it HAS been for me while on this trial.

The doc is at ASCO, so that makes communication much harder, but I think she is going to talk to the trial medical monitor - hopefully they can find a way for me to safely stay on this drug.

Keep your fingers crossed.

[chrisy]

At least I didn't cry in front of them this time!

[Colleens_Husband]

Yeah Chrisy!

At least for keeping it all in perspective. Sometimes drug trials are more interested in people who go out of the margins than those safely in the middle. This may make you more likely to stay in the trial. You never know for sure.

Reward yourself with chocolate covered in spray cheese. Smoky Bacon Cheddar goes best with chocolate.

Lee

[chrisy]

Gosh Lee,
I'm here at the airport waiting for a flight and I found some VERY nice Ghirardelli 70% chocolate at the airport store, but not a sign of any spray cheese...and definitely not smoky bacon cheddar. I suppose they figure it could be used as weapon - as I said on the "might need some help" thread, you could put an eye out with that stuff!

Maybe I can get some smoky chipotle salsa, but it won't be the same

[Barbara H.]

Hi Chrisy,
Unless your AST is way out of bounds (grade 3), I can't believe that they would pull you from the study. It just may take a few weeks for it to come down. Mine was much more sporadic at the beginning of the trial. Nevertheless, my treatment was also withheld last Thursday.
I hope you will be treated next week.
Best wishes,
Barbara H.

[Carolyns]

Hi Chrisy,

I have my fingers and toes crossed for you.

If it helps, I have had an uncontrollable urge to eat chocolate and I am not a chocolate person. It is interesting to be influenced by a Her 2 thread. So far, at the Italian market, I bought those butter cookies with jelly in the middle dipped in chocolate, cranberries dipped in dark chocolate (does this count as medicine for my frequent UTI's... I count it as being pro-active), M & Ms with and without peanuts and chocolate chip cookies.

Chrisy, You are in my prayers evey night. Thanks for keeping us posted.

Love, Hope, Peace,

Carolyn

[Faith in Him]

Chrisy,

I hope your numbers get in line soon and that you can have treatment.

Sending a prayer your way.

Tonya

[PinkGirl]

Hey Chrisy
Sorry about your big-AST numbers :) I guess this means we have
to keep on the chocolate binge for you. It's a lot for you to ask
but I will do it, just for you!

I like your new avatar with the kids eating the chocolates. Notice
how dainty and lady-like Tippy looks and then there's Tex - in the box
feet first.

I'm really sorry you have to wait longer for your treatment. I don't
think they're going to kick you out of the trial.... just have to wait
for those big-AST numbers to come down. Keep the faith Chris.

[abitjaded]

Oh Chrisy,

So sorry.

Have you all ever seen the Goofy Movie. Funny , uplifting and a very good spray cheese sub-plot.

Thinking of you.

Carla

[Believe51]

BURP! Oh, caught me chugging some chocolate! Thinking about you and wishing you are feeling better today. Try not to be so tough on yourself you sweet thing. And before I forget, sending a gynormous cyber-hug to you. Lots of Love and Prayers>>Believe51

[Sheila]

OK Chrisy
I believe your onc. should be home by now, loaded with Chicago Frangos....(there is no other no matter what Macy's says...they are made here!!!!) and should be able to "sweet talk" them into keeping you in the trials.
I am overindulging in chocoalate until I get the word that you are back on schedule getting the goods!

[chrisy]

Pink Girl, you really crack me up!!!!!! (ha ha)

Sheila, fortunately my doctor took some time off from the Frango mints to call the Genentech people and get me an exemption, so I was able to go in today and get treatment. YAY!

I'm now on the 28 day schedule, but and definitely going to work on getting my big AST numbers down!

That said, I'm lowering the chocolate alert level to white...

Pinkgirl, I think the idea of spray chocolate is sacrilege. Don't go there!

[Jackie07]

Great news! Crisy.

I haven't been reading the board lately. So glad that the problem is gone now and you are continuing treatment.

[PinkGirl]

That's great news Chrisy!!! I am very happy for you.

Are you sure you don't want us to keep eating the
chocolate prophylactically??? I am willing if it will
help.

Sorry about my mention of chocolate in a spray can.
I just had visions of me while on steroids, walking through
the dark kitchen at 4 am, going to the fridge for the spray
chocolate and just squirting it down my throat. Sorry,
you're right, it wouldn't be a good thing for us. Maybe.

[abitjaded]

Yeah Chrisy!

Spray Chocolate!!!

Carla

[jones7676]

It has been quite a while since I've been here...I'm glad to hear the positive news...sometimes I think we just need to let it out!

[fauxgypsy]

I cried at my treatment three weeks ago from sheer frustration. I cried shortly after I got there. No one had told me my onc was going to be out of town (for a month) and then his assistant wasn't there either. I had been having some problems and thought we might be able to resolve them. The assistant had not followed up on something like she was supposed to and it just left me hanging. The nurse called her while I was there and she just sort of blew me off. No explanation. So I cried from sheer frustration as I was leaving. It was embarrassing. The hurry up and wait of the last year and a half, the frustration of doing what I'm told to do and having the doctors and their staff drop the ball, time after time, has really ramped me up. Chocolates did not help. I finally called her on the way home, and left a message saying politely but firmly that if she was not going to order the test for MRSA that I had requested then I expected an explanation. She called me back the next day. That is when I found out that she had not followed up and gotten the information that she should have gotten to order the test.

I guess where I am going with this is that it does all build up and it hits sometimes when you are least expecting it. The anger, the fear, and the pure frustration of all the things that are out of our control in our lives. I remember once when I arrived for a treatment at the hospital and the "former" oncologist's office had forgotten to schedule it. The next time I saw him he started to lecture me about missing my treatment. I was there, the treatment wasn't. After a while it seems like all of these little things start to build up. And I cry because my toast is too brown. I cry when I feel that I have no control over what is going on in my life. I cry when I feel like I am not being heard by people who are making decisions about my life. And I have always hated crying in public. I don't want sympathy, I am not crying because I am sad.

I think I just reiterated what Lee said, in a way. I do think that it is a reasonable reaction to all of the stress and trauma in our lives but I also know just how embarassing it can be. Hope youy feel better now.

Leslie