Thursday, June 21, 2012

Tumor Doubled in Size

No wonder I can't eat anything.

The tumor near my stomach has MORE than doubled in size and is squashing my poor stomach terribly.

This is really really bad news.

This tumor is growing very aggressively.

Strangely, all the little tumors in my lungs pretty much stayed the same size. But even though that is great news, it's not enough to cancel out that the other tumor grew so much.

Dr Reidel explained my options. For the first time ever, he talked about hospice as an option.

I got really choked up and asked if that meant we were giving up.

Dr R said hospice isn't about giving up; it's about changing the focus to make the most out of every day that's left.

He said it used to be that hospice wasn't mentioned till very very late, and then the patient was dead a week later. But there are studies that show that when hospice starts earlier, people live longer.

The hospice nurses are expert at managing the pain and quality of life issues to make the most out of every day.

Can you tell where this is going?

Of course, I could do chemo again instead. But the track record of this chemo is nothing to write home about.

Plus, after going through chemo SEVEN times already, I really am having a hard time with the idea of going through it again, especially since I am already so miserable and exhausted already on most days.

We did meet with the clinical trial protocol nurse to get the facts. It turns out I know and love this nurse (Lynn) from the Duke chemo treatment room! She just switched jobs.

But after hearing more details, I just became very clear that I am done with chemo. I just don't have it in me.

So it's time for hospice.

Please don't call me tonight. Both Lou and I are devastated and don't want to talk to anyone yet.

Leave me a comment instead!


Sent from my Verizon Wireless Phone

34 comments:

Anonymous said...

I get to be first, first, first. I cannot imagine what is going through your mind and heart but know this as if you don't already know it, you don't have to do any of this alone. I am with you and so many others are too. I love you so much and you are and continue to be an amazing inspiration to me. I love you.

Kathy from Kirkland

Anonymous said...

Hugs, Karen....I did hospice in California, it was rewarding. I met and loved so many families. I entered a home as a stranger, I looked into my patient's eyes, and the families eyes, and was as honest with them as I could be. I became part of the family, and got very close to my patients. I know how devastated you both are. This is an impossible place to be, but it is the elephant in the room. I am so sad for you that chemo never beat those tumors. Now you will set smaller goals and you will feel fulfilled. The hospice nurses are so good at your physical comfort, and your emotional comfort. You will build new bonds with them that will sustain you and Lou.
You have been an inspiration to so many folks as your battle raged. Please know we all will continue to pray for you more fervently. Love, aunt Peggy

Anonymous said...

Karen and Lou- Sending light and love. Please don't forget to drink some water tonight. Love, Amelia

Anonymous said...

Karen and Lou,
I am so very sad about today's news it is hard to know what to say. There are really just no words that are meaningful except that you are both loved and cared about by all of your friends and family and yes, you definitely do not have to go through this alone. Jim and I send our prayers and hopes that with the help of Hospice you will begin to have some relief from the pain. You are both wonderful and amazing and I wish I could be there to give you each a hug in person. Love you lots and lots and lots, Debbie P.

Anonymous said...

Eric and I are sending you love, reaching our arms out to you to hold you close,

Jeannie

Marybeth said...

Karen, I am so sorry to hear about the tumor near your stomach. I also don't quite know what to say but want you to know that you and your family are very loved and cared about. My family has you and yours in our prayers. I wish you peace with the decision you have made. I can not imagine how hard today has been. Love you much.

Mary Mcenteer said...

I cannot even express in words how sad I am at your news. I have long admired your courage, sense of humor, and your faith in a God of your understanding. You freaking ROCK girl! Don't forget about all that now. I cannot even imagine the thoughts you are feeling, but please know I would like to be of support in any way possible. I will be out of the country until June 30th, but I will contact you when I get home to see if you are up for a visit. Much Love! Mary

Holly said...

This stinks. Tinalynne just called to tell me the news. She said she tried to log on to read your update, but is having trouble with her internet connection tonight. I've been praying things will only get better, but now even more prayers are going out. I know there really are no words to "make it better".. but, "hang in there", "fight", etc.. always come to mind...

This stinks.

Carol Quast said...

Dearest Karen, I feel like my heart is breaking right now. I will just echo what so many have already said: You are loved so much and have made such a difference in my life and the lives of so many of us. Big hugs to you and Lou and Pat and Omer. Love, Carol

Drake said...

Karen-words are useless for me at this point... I just hope you can feel the outpouring of love...soak in it if you can...Anya

Gail Tate said...

Karen, don't forget that you are strong, and have the most positive attitude. You & Lou have many friends & family that love you. Sending big hugs to both of you. Going to Michigan in the AM, but will bring the bagels & one dog over when we return..Love you both, Gail & Mo

Anonymous said...

Hello Karen and Lou,
The first words that come to mind are "fudge off" (or words to that effect...) you have been gracious enough to share your life journey through the good times and in the unpleasant times...doing so in a manner that was a window to your travel world and now through the unsure road that challenges you...however, as you forge the next steps I know you have made informed choices to have a quality of life...you have had an amazing "trip" with Lou and my wish and prayers are that you continue in a manner that brings you peace and calmness...our prayers continue for both of you and for the professionals that treat you...take time for yourselves and know that you are loved by many...fondly, Mr and Mrs. S. xxoo

Jenn said...

Karen, you and Lou continue to be in our prayers. I wish that were enough, and I wish that love itself was strong enough to beat back the cancer. But if it were, no one would have it... So instead I just hope you can feel all the love comin' at ya. You rock.

Thandi said...

Hugs from South Africa. So sorry about this unwelcome news.Wishign you both strength and some sense of peace..Not sure how that's even possible.I hope that pain and other issues can be managed so you can be as symptom-free as possible for as long as possible.

Anonymous said...

Good morning love of my life. Your trusted servant is here ready to serve. Hey did you hear about the horse that walked into a bar? Horse walks in and sits at the bar. Bartender says “hey why the long face?” ;-) I know pretty old.

Lve you most,
Lou

Anonymous said...

Do you really even know how much you inspire everyone? (especially everyone on your old vanpool?) Hugs and prayers are with you & Lou....xoxoxox

Anonymous said...

Karen, you're still an inspiration for me!
Vanpool Joe

Anonymous said...

Karen,

I'm so sad to hear the news. You are always smiling and cheerful... Keep your smiles. We'll all be with you and sending love to you.

-Pu

Anonymous said...

Saying this isn't fair is such an understatement. Our thoughts and prayers will continue to be with you. We still pray for miracles and for you to be strengthened. -- Vanpool Stephen

Urgo said...

Every year for the past 5 years I've been a part of (not a player but a promoter and donator and help run some of the things for them) this thing called The Mario Marathon where tens/hundreds of? thousands of people gather together on the Internet and raise money for a charity called Child's Play which donates books, toys, and video games to sick kids in Children's hospitals around the world. I just got Lou's email today just as we're about to kick off year 5 of this event (starts in 1 1/2 hours)

I will put some collective good thoughts in and get the Internet wishing you well. *hugs* through this, the hardest of times.

-Jason

Anonymous said...

Dear Karen. Words just cannot express how sad I am to hear this news. In my head, I suspected this day might come, but my heart wasn't quite ready. Still, I trust that this is the right choice. Know that Woody and I are holding you and Lou in our hearts.

--Meredyth

Anonymous said...

Dear Karen,
lou's email said he is mad at life and we are mad too--for you both! You have always been so courageous and cheerful in this fight and your decision is courageous also. We are here to stand with you, take either of you anywhere you need to go, trim the bushes, water the plants--you name it!

Tons of prayers everyday!
Linda, Carol and Evelyn

Anonymous said...

Dear Karen and Lou, Patsy and Omer,
May God be with you during this time. I am so very sorry about this news. Karen, you are a shining light and a shining example for all of us. Much love, April

Tinalynne said...

There are no adequate words. Every word written by your supporters are true. I can tell you hospice is the best thing that Michael and I did. Hopsice helped him and they sure as hell helped me get through that time. You a quitter? HELL NO, I have never seen you quit anything! This is the next step in this life journey and you will shine through it.
Love, hugs, prayers, to you and Lou. My sister my friend...Kaybee.

Anonymous said...

Karen, I can't begin to tell you what getting to know you has meant to me in the past couple of years. You are such a great friend, a wonderful listener, a dry, wicked sense of humor, a curious nature that makes me think about things differently when I need to. I love you and will keep you, Lou, Patsy, and Omer in my thoughts and prayers. Please let me know if I can bring over some jerky. Love, Christy

Anonymous said...

Love, Love, Love, and Peace, Peace, Peace, and Prayers, Prayers, Prayers.

I smiled at Lou's joke--I hope he remembers many more.

Peace, care, and love to both of you and yours,
--Heidi

Carol Quast said...

Okay. Here's one I heard in my Dreamweaver class yesterday:

What did the grape say when the elephant stepped on it? Nothing - it just let out a little wine.

Anonymous said...

Karen, Got an email from April mentioning your sad news. I am utterly speachless and... I know a lot of us are and I also know there is nothing I can say that actually helps matters any but I am thinking of you and hoping for the absolute best for you and your husband, whatever that turns out to be. You are in my thoughts EVERY DAY and I am so impressed with how you have handled everything up until now and know that you will continue to do what you need to do with strength and your fabulous sense of humor and the love of those around you. Many many many hugs. Love, Teresa

David Simmons said...

I'm saddened to read this Karen but, as always, I am in awe of your strength and character and understanding. You still have my number and I'll still take you anywhere you want or need to be.

Anonymous said...

I am not sure what to say beyond that my thoughts and prayers are with you and Lou. Thank you for your blog that takes us through the ups and downs and into the nitty gritty of life. I am grateful for who you are.

Kristen H - Woodinville

Georgia said...

Hey Karen,
The tumour news is a shocker! It took me by complete surprise. I am so sorry the news got so oppressive. You have not been one to give up- the thought has not seemed to cross your mind in the blog. 7 chemos is incredible. Again, I can only say that you have inspired me again and again and I wish only the best for you.
I am about to start on Yondelis this week- my third chemo. GEMTAX was a complete disaster for me. My tumours doubled within three months compared to the whole of last year. I have been given "several months" but will still try chemo just in case. All my many tumours are in my abdomen and are now pressuring absolutely everything. I literally feel for you in this moment. I am starting to lose my ability to walk freely, it's something to do with tumours putting pressure on my lymph nodes in my pelvis. I ank about to finish up atwork this week after a 25 year career in teaching. I have hope that things will still go well for us both.
Wishing you faith hope and love,
Georgia

Anonymous said...

Hi Karen,
I am Shaunas sister from Toronto. We have continued our prayers for you and will pray harder in the coming days!! I volunteered for hospice when I lived in NC and can tell you it was a place of peace, with truly amazing nursing and spiritual care for the patient and their family. On another note, Miracles DO happen, so I will be praying for a special miracle for you!!! God Love You:)
Katie Grieve
xoxo

Anonymous said...

Thinking of you and your family, Karen. I am a friend of Shauna's. I lost my husband to cancer and my father in law is battling lung cancer right now. Have courage and don't lose heart. Isaiah 49:15. Cancer can steal a lot of things from you but not love and the spirit. We will be keeping you in our thoughts and prayers. God Bless, Maria and children from Monroe

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