Thursday, February 12, 2009

Drained.....

That title is referring to both physically and mentally....

Physically - everything went well yesterday. The drain is in place! I thought the procedure was going to be the same as the temporary one, but was actually quite different. During the temp one, they just numb the area and I'm wide awake. Yesterday, however, they used sedation through my iv line so I was totally asleep (which is probably for the better). They actually inserted the tube closer to my belly button, but instead of coming right back out the same spot they run the tubing underneath your skin for 3-4 inches to keep it more stable and thus the drain comes out closer to my side abdomen. Trust me - I feel nothing. Let me rephrase that b/c I am actually really sore and hurting quite a bit from the procedure. I'm poppin the pain meds every 4 hours and it's still fairly sore, especially when I cough. But in the long run, I won't feel anything.

Mentally - I'm drained as well. It's been a long three weeks with this abdominal fluid. I'm glad I finally have some relief. Meghan said I was like a new person last night, but I think part of it was being on so many meds b/c today I'm just exhausted and sore.

The toughest thing mentally has been facing some very difficult questions and not to mention trying to keep a clear head with respect to researching and find the best treatment option at the same time. I've said this before, but I'm in a very lucky position to work for a great organization in the National Coalition for Cancer Survivorship. Over the past week, we've reached out to numerous doctors and leaders in the field for lung cancer. First and foremost, I have to thank my boss Ellen for leading the charge. She is a 3x, thirty-five year, cancer survivor with the heart of a mother but the fight of a lion.

For those that have ever had found themselves in the midst of a medical nightmare - whether that is fighting insurance companies or a doctor's bill, finding the right doctor, or just wanting better medical care - than you have a small glimpse of how overwhelming it can be. Making critical decisions, or in my case life altering decisions, requires putting in a lot of time and effort. Furthermore, not feeling well physically and being pushed to the limit mentally the past two weeks makes the task even more challenging.

However, working for NCCS over the past 3 years has prepared me for these situations. I've become educated and most importantly empowered!!! At the same time, when you do feel stretched thin, it is always nice to have others take charge for you.

So - last Wednesday, my doctor had recommended another chemo drug called Irinotecan. It's just another drug approved for lung cancer and hopefully would produce good results. However, it is very toxic (equivalent in toxicity to the regimen I have been on the past 4 months). Given my body and the weakness which has resulted from toxicity, I knew I needed a break but at the same time needed to stay on some sort of treatment given the progression of my cancer.

Last Friday, Ellen and I talked to the doctor in Colorado. He was the doctor Meg and I visited back in the summer when we were at a previous juncture in treatment. He suggested taking an oral drug called Sorafenib. Sorafenib is an oral pill taken 2x a day and a lot less toxic than irinotecan. All of you guys know my strength and attitude and if I needed to suck it up and take Irinotecan than I would. But honestly that would be a lot for me to endure right now. Thanks to Ellen, other co-workers, and partners in the pharmaceutical industry, we received wonderful advice from top doctors across the country regarding this treatment and possible clinical trials from Georgetown and Maryland to Dana Farber in Boston. Unfortunately, given the fact that I've taken 4-5 different chemotherapy agents over the past 3 years I am excluded from entering into nearly 90% of the trials available. (There are still 1 or 2 we are looking into - but if it fits that will be another one hopefully up our sleeve when we need it as a decision with Sorafenib has been made).

Sorafenib does have some side effects like rashes on hands/feet, diarrhea, and fatigue. It just will give my body time to recover, gain some weight, etc. for when I need to go on Irinotecan or whatever. However, I'm not ruling out Sorafenib will work or at least will work for quite some time. I have to hope it will work as long as possible which would be awesome and amazing so I'm crossing my fingers. However, realistically any extra amount of time it buys us would be great!!!
I got a script for Sorafenib from my doctor yesterday. Since it is only approved for Kidney and Liver cancer, it's going to take a few days for the insurance to clear. I've been given a few days supply to get started which I'll probably begin on Sunday or Monday just to give my body 2-3 days to heal from yesterday's procedure. SO let's pray there will not be too much of a hassle from my insurance and let's pray that it works! The convenience of just taking a pill and not dealing with a hospital, and iv lines, and blood drawn, etc. will be nice. Last but not least, even though they say the side effects will be minimal for most people - let's hope that this one time I'm most people!

15 comments:

The Urbans said...

We believe it WILL WORK and will all be praying for positive results. It is great you have such strong support & connections from your boss--she seems like an amazing lady. Hope you recover from yesterday soon! We also hope you & Meg can enjoy Valentine's Day--you both deserve a day that you can hopefully take time, relax and celebrate the strong love you have for each other!
Love, Patrice & James

Anonymous said...

Dan and Meg,

All of our love, support and prayers are extended to both of you. The two of you are models of how to tackle life's challenges head-on with passion, vigor, and a positive attitude. May all of us live more of our lives this way. Stay strong, recover quickly and be well. You WILL WIN, Waeger!
Love, David and Lisa Walker & Family

The Sparrow Family said...

Dan,

We are glad to hear that everything went well yesterday and that you are over your "pregnancy." Happy Valentine's to your wonderful fiancee, Meg. Lots of love, Frank, Shelby, Eli and Julia

Anonymous said...

Danny & Meg, I am glad I got to be there for your procedure this week because you looked better than last week. Having the drain will hopefully allow you to eat more and gain some weight back. And I came away with renewed hope with the new medicine. I so wish I could take away the physical discomfort you are experiencing. I want so much for you and Meg to have days when you are pain free and feeling good and strong so you can both relax and enjoy each other's company and just appreciate the love you have for each other. Blessings and love, mom

Surviving Daily said...

Thanks for the update. You have earned a weekend off, in spades, as they say! (or used to say when I was young!!)

hughesd2000 said...

Happy Valentine's Day Dan and Meg. Hope you both are able to enjoy the day and get a little (or a lot)of rest. Sending positive and healing thoughts and prayers your way. Here's to becoming the new spokesman for Sorafenib!!! Have a great weekend and glad that you have found the next phase of treatment right for you.

Love,
Dana

Obsessedwithlife said...

That's interesting. Good luck with everything! I was on Irinotecan in the past for my Askin's Tumor sarcoma treatments.

monster said...

Please do relax this weekend and get ready to tackle this with strength as you start the new drug!!! We are all behind you, but you need energy to lead the charge! Alex and Chopin send their valentine wishes to you both (they didn't get a home made valentine in the mail to you in time, sorry).
-Holly

Diane said...

Hi Dan,
Just want to thank you so much for your lifting words on Scottie's site. Thank you for taking the time to think about him, while you are having a rough spot. He is having a tough time with this transplant, but like you, he is one helluva fighter. We are praying for you every day as you head into the new treatment. Stay strong, and like you've said to my Scottie ... KEEP FIGHTING DAN !!
By the way, I love the digs you get in about Brendan ... priceless!! Our prayers are constantly with you and Meg.
Diane

Sharon K said...

Hi Dan & Meg! You have both been in my thoughts all week since the day that we did the 24 hour of prayer that mom arranged. It may sound corny, and I don't know how religious or spiritual either of you are, but the prayers I was reading and saying for you were about letting the light of good infuse dan's body to the cells, and even his soul and cleanse them, and to allow him to feel the healing power, etc, etc. I had images of amazing glowing healing power surrounding him. I hope that it helped!

I wish you both strength and courage while you're making these difficult choices about treatments. Dan, like you said, you're working in the right place and can get through to the best experts. Seems to me like that's for a reason, so that you can get the help that you need with your fight. Hang in there, both of you, and remember that we love you and are pulling for you.

~love cousin Sharon, from Tahoe

Erin said...

We just wanted to wish you both a belated Happy Valentine's Day. The love you have for each other shines through in each and every post, and we hope you found time to relax and celebrate! We know that, in the face of everything you are confronting, your continued love for each other will bring you respite, laughter, understanding, and strength. We'll be thinking of you both as you move forward this week -- and sending all of our best wishes your way. Erin, Brendon (& the little ones)

Michael Bergin said...

Dan - apologies for the early text on Saturday. I thought the whole world was up by 9a. I guess I am officially old. The new drug sounds promising...get some rest.
Peace,
Michael

Hanna said...

hey PAL leader! long time no talk. i've been keeping up with your posts and think of you often. sounds like you have a great support system and many loved ones around you. just know that there are more people than you think saying some prayers out there :) Hope you and Meg enjoyed your weekend. Love and prayers, Hanna

Anonymous said...

Just wanted to check in and say we've been thinking of you guys - hope Dan you are feeling more energetic and that you guys have had a relaxing weekend. Talk to you soon-
Love NMR & fam

Anonymous said...

Thoughts are with you!
Waeger Will WIn.
-Laura