checking in

[Joy]

Hello to all of you, I always have such a hard time posting after we experience losses. I am so sad about Vanessa and Karen and Leroy Sievers. It is that gripping kind of grief that takes hold and doesn't let go to some degree forever. I reiterate the sentitment that I hate this disease. I just hate that whenever things are going well despite cancer-it is still there messing that up.

Anyway, I have now had 4 treatments of Herceptin DM1. So far I feel pretty good. The headache and fatigue that I experience seem pretty consistent with the treatment. Meaning that for 5ish days after the dose I have a headache and feel pretty tired. I bounce back and feel pretty good overall. Given that I have experienced hair loss, nausea, bone pain, hand/foot syndrome all pretty badly in the past-I will take this fo' sho'.

My first CT after 2 treatments showed no progression. So the crap has stopped growing. My tumor markers after 3 treatments showed a gradual decline. Nothing huge, but steady decrease. I am working on thinking that this is great. I know it is, I just want it gone and gone now (you all know how it is). So my doc and I have decided that it is working. What do you real experts think? And for those of you for whom this has worked was it gradual or dramatic in your responses?

Meanwhile, my girls have both started school. Both in new schools as one child graduated 6th grade and the other could not go on in our small private school as it had to close So this is a big transition year for us. My oldest began 7th grade at an Outward Bound Expeditionary based school and I am very excited for her. I can't believe she is old enough to be in jr. high. She was excited on the first day as we were driving there, but once we got in the building (this school goes through high school) and there were so many more kids than what she was used to and so many older, bigger kids-the look on her face said it all. She was wide-eyes and you could SEE the nerves. When I looked at her I had the weirdest visual experience of seeing my hairless, blue-eyed, chubby baby-not the young woman she is becoming. And, just like her first day of pre-k, I had to go out to the parking lot and cry.

My youngest started at a smallish private school in 4th grade with a fabulous teacher and she was the one I was most worried about as she has always had separation issues. She was great. She had a great day and you could tell how proud she was to be there and to have enjoyed her first day. I am very excited and proud as well.

Luca and I are great and our kids are getting along so very well. It is so wonderful. On Sunday we all did school supply shopping (an earthly form of Hell) and then the kids were playing freeze tag in his backyard and we were watching from a window. He hugged me and said, "this is everything. This is everything I could have ever hoped for...to be watching our kids play and be happy and to share that with you. I haven't ever really had that to share with anyone and I love that it is you and your kids." I was feeling the same way and it was heavenly. We were feeling so blessed.

On the way home my kids were talking about if Luca and I got married what the logistics would be. I was very happy that they loved the idea. Luca and I have never discussed this ourselves, but we are thrilled that both my kids and his feel this way. I adore his kids. They are polite and smart and thoughtful and sweet and funny and adorable. It is a real reflection of their dad who has done almost all of the child rearing.

Now I just need to survive this stupid cancer so we can have that future. Is that really possible or just a stupid hope?

Love to all of you and yours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!

[chrisy]

So glad you posted, you seem so happy and as always expressed so well the juggling act we do, keeping grief, fear, and joy in the air all of the time.

Seems to me that yes, the DM1 is working. Steady downward markers and stable scan is a good thing!

For me, there are no markers to track (they've never been reliable) but my scans showed "gone" on the multiple tiny things that were starting to light up after being naked (no treatment) for a month. The 2 REAL lesions dropped in activity level on the PET scan and have slowly continued to become less active and VERY slowly decreased in size. I definitely can relate to just wanting it all gone, NOW.

I have to call you out on your use of the word STUPID.

Cancer is definitely stupid. Tricky, but stupid.

HOPE IS NEVER STUPID.

much much love to you
Chris

[mts]

Joy-

I just wanted to tell you that your writing about your family really tells a beautiful story. Its clear there is much love and mutual respect. Many people live a life without ever getting either or think they have it and don't.

Enjoy your joy !

Maria

[DonnaD]

Joy,
I must agree with Chrisy. Stupid does apply to cancer but not to hope. That is what keeps us all going.

Enjoy this blissful time in your life. We must all count our blessings.
Donna

[Hopeful]

Joy,

I am always happy to see you posting. I love your writing, and the way you so effortlessly share all that is in your heart and mind with us. Your parents certainly gave you the most appropriate name possible - wonder how they knew? I wish you and your family all the very best. Be sure to check in again, soon!

Hopeful

[Mary Jo]

Hi Joy,

I, too, am so happy to see your post.......as I've told you before your posts always bring me JOY.

You sound so happy and I am happy for you. Oh what love can do to ones heart and life, huh? AND, you do sound in love and then to top it off....the kids get along....WELL, it truly doesn't get much better than that.

As for your tx, I can't comment 'cause I don't know BUT I do "know" that no progression is good and tumor markers dropping is also good

Thanks Joy for taking the time to touch base with us. We LOVE you and LOVE the joy you bring to this site.

God's Hand of healing, peace and joy be with you...

Mary Jo

[suzan w]

Hi Joy, thank you for your beautiful post. It sounds like you have an incredible loving supportive family/extended family. I feel like I know you and yes...HOPE is possible!!!

[Bill]

Joy! It's so good to hear from you and hear that things are going so well for you. Little Sis, I was within 2 days of sending out a search party for you. I'm so glad that you and Luca have found each other and that your kids get along so well. That means so much. Love ya, Big Brother Bill

[Carolyns]

Joy,

I agree with the others that it is ALWAYS great to hear from you. Someone was really on the right track and had great foresight when the named you Joy. Your results sound positive to me. Your post gave me such hope! I love that you have found love as a single mom who also happens to be stage 4. This means there is hope for me...ha, ha!

Your mention of hope also q's me to cross post something I just sent to Joe about his recent post titled "Information to Survive". They have a PDF file named "You have a Right to be hopeful". My markers are rising and I was going to a drs appt. today and suffering from major inScanity yesterday. Anyway, Joe posted on this topic and I sent him the response below along with the link to the article. I printed and took the article to my center today and the staff thought it was Brilliant. If you have time please read this article on hope. It gave me such a lift and really made me understand my strong need for hope. Hope is powerful medicine and should never be underestimated. Joy, you don't have a stupid thought in your head and your hope will never be stupid. You go girl!!!


Joe,

Thank you so much, I really needed this today. I loved the PDF titled, "You have the right to be hopeful". I am tired of hearing people use the term "false" hope. No one knows how important hope is until they are truly faced with their own mortality. People try to imagine but, thankfully, for them they can not get the full intensity of emotion unless faced with it. They can not imagine and do not know how they would feel or react. Scan time brings this up over and over for mets girls and others I imagine. This article fully outlines the evolving meaning of hope and why we have a Right to be hopeful.

I really needed this today, thank you!

Carolyn

Below is a link to the PDF.
http://www.canceradvocacy.org/resour...ns/hopeful.pdf

[Sheila]

Joy
Your posts bring such happiness....and hope for all of us!
you have Hope, you have love, you have found "Joy" in this journey...may it never end!!!!

[Barbara H.]

Hi Joy,
I adored your post. I am also on the trial and I believe that it is working for you. It did take a while for my markers to come down. They have been normal for a while.
Best wishes,
Barbara H.

[DanaRT]

Hi Joy,

Great report on the first day of school and sharing your loving family experiences. Did the day go well for your (7th grade) daughter at the new school?

Dana

[fullofbeans]

Having hope is essential, hope can sometimes takes the form of faith IMO.

Living without hope is not living it is surviving.

Thank you for sharing your emotions in respect of your family and the fab new extension, it felt great reading it, so much love and happiness to be have.

We know the precariousness of life which in some twisted way enhance our experience of everyday life.

A few years back if I had told you that a nice man would considere dating/(going out with) you; a stage 4 with kids when he had kids himself you probably would have not beleive it to be very probable at all..and look at you now.. you searched and asked for a man and..

Hope is your friend, beleive and have faith; this crap and stupid cancer will go, it just has to go! no choice, full stop. The power of the mind (or else) has some impenetrable ways!

Keep enjoying your life, not only you deserve it but it is also the best therapy..

Lots of love

PS: I think that when it comes to hope it is not a right to be hopeful, its a duty! ;-)

[Believe51]

My Joy today is "Hearing from my JOY". So happy to hear the contentment in your voice when you talk about the family, it makes my heart smile! And Joy, I want it to be gone for you too. This is what I pray for when I pray for you.....our other prayers appear to be answered! Keep up the great work>>Believe51