A teary and embarrassing moment - need hugs! And chocolate! - Page 2

chrisy · 05-28-2008, 09:54 AM

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 · 05-28-2008, 10:24 AM

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 · 05-28-2008, 12:16 PM

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 · 05-28-2008, 12:25 PM

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 · 05-28-2008, 12:25 PM

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 · 05-28-2008, 12:29 PM

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 · 05-28-2008, 02:01 PM

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. · 05-28-2008, 02:22 PM

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 · 05-28-2008, 03:45 PM

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 · 05-28-2008, 04:49 PM

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 · 05-28-2008, 05:33 PM

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 · 05-28-2008, 06:45 PM

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 · 05-28-2008, 08:41 PM

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 · 05-28-2008, 09:09 PM

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 · 05-29-2008, 12:19 AM

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 · 05-29-2008, 12:45 PM

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.c...2114&langId=-1

Carla

Ruth · 05-29-2008, 02:08 PM

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 · 05-29-2008, 10:36 PM

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. · 05-30-2008, 04:55 PM

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 · 05-30-2008, 07:55 PM

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