Monday, February 9, 2009

The Pregnant Man

I don't mean to make a joke of my situation b/c my stomach has been very uncomfortable and even painful at times, but lately I've felt like the pregnant man.

To start from the beginning, I have been bloated for nearly two to three weeks now. My abdomen was extended and felt very uncomfortable. I finally went into the doctors on Friday, January 30th. When they did the tests, my CT scan revealed the bloated feeling is actually a collection of fluid in my stomach. It doesn't really matter what the fluid is, but the fluid is caused by the cancer.

The fluid is called ascites and pretty much your only option to have the fluid go away is to have it drained. So they were prepared and drained it immediately. I went up to my nurse's station and a guy came in with an ultrasound. They used the ultrasound to guide a needle to numb the area. After it is numb, they insert a drain or small tube like an IV line. They took 1.5 liters of fluid out and the draining part only took about 10 minutes. It wasn't too painful, but just uncomfortable. But as soon as the fluid is drained, you can feel the pressure leaving your abdomen almost immediately.

Unfortunately, there is no long term solution to the fluid. At that time, they said my abdomen would most likely keep accumulating fluid at a rate of every week, to 2 weeks, to 3 weeks. Well, just two days later it re-accumulated which is not good. On Wednesday of last week (Feb. 4th), I went back in for the 2nd time and they drained another 1.5 liters of fluid.

Finally, with respect to the rest of my cancer. We did not receive the best of news on Wednesday as well. The disappointing news was that there is growth in the lymphatic area around my lung. There is nothing measurable, but as my doctor described it was a thickening of the mass or lining around the edge of the lung. While it's not measurable, it does represent disease progression and my doctor is seriously concerned. It is more concerning than the fluid. As bad as the fluid sounds, that will just be more annoying. The disease progression is not ideal and having gone through 4-5 treatments already, our options are limited.

With that being said, my doctor recommended one therapy approach which he wants to start immediately (which would be next week). I've asked to hold off a few days and reach out to the top lung cancer experts in the country which we did back in the summer. Thanks to my job, I have the luxury of very good contacts. We are waiting to hear back on their opinion and whether or not there is a viable clinical trial to enter right now. If I decide on a clinical trial - I would probably start in 3 weeks given all the paperwork/insurance stuff that is involved. However, a decision on all this will probably be made by the end of this week as we need to act fast.

Also, given the rate of the fluid coming back, I had to go back in today to have it drained again. While they only got 1 liter this time, I can assure you the pain and discomfort is nothing I wish upon anyone. They are finally going to insert a permanent drain this Thursday, which I will have to manage myself. It just means a small little port or IV line will be stitched to the side of my stomach and every 2 days or so I will have to release the valve on the IV line into a bottle. I will not need to carry around a bag or bottle all day. To my understanding, I'll probably just have a foot or so of IV line or small tubing taped to my side. When I start to feel uncomfortable, I will open the valve into small bottle at home when needed.

SOOOOO - I think I gave everyone the full update. We will let you know when a decision on treatment is made. We are staying positive and strong and all of your support gives us even more strength! Thank you!!!!!

P.S. The Smoothie King put a sign on their door saying they don't agree with the management's decision on their towing policy. Hahaha.

14 comments:

Obsessedwithlife said...

I'm sorry to hear all that is going on :(. Will keep you in prayer!

hughesd2000 said...

Thanks for the update. First of all, I hope your pain and discomfort with the fluid is relieved somewhat by the ability to do it yourself. Helps you to have some control over what is happening. I am really sorry about the news of the disease progression, but know that with your strength and commitment to this fight anything is possible. We love you and are sending lots of prayers and positive thoughts your way.

Love,
Dana and The Haxton Clan

Anonymous said...

Danny, I don't know what to say here. My pain is raw but I am doing ok. I am relieved to know you will get the permanent drain in this week and will hopefully then be able to eat better which in turn will allow you to feel physically stronger. I can come on Thurs if you want me to. Love, mom

Anonymous said...

You and Meg are constantly in our thoughts and prayers. We check your blog a few times a week. We appreciate you keeping everyone informed! Let us know if you ever need a hand around the house or a ride to treatment or anything else!

Love, Mike and Katie

Sharon K said...

Hi Dan & Meghan! (It's cousin Sharon Kerrigan from Tahoe.) Mom (aunt Kittie) arranged for today to be a day of prayer & intention for you, Dan, and I am just about to start my hour and wanted to have a picture of you in the forefront of my mind. So I came to the blog & read your post - am so sorry you feel like the pregnant man! (At least for a mom, she goes through that knowing about how long it will be for & there's the reward of a baby at the end.) At least there's a way to relieve the uncomfortableness, and it's not too bad to have the IV cord??

Good on both of you to do battle with that towing company - & especially to have the cops on your side! Hooray! (hee hee!)

Anyway, I know we've never met, Dan, but from everything that I hear you are young and strong and have an amazing positive outlook on life. I'm betting on you to win this fight with cancer. Please know that there are so many of us out here pulling for you, praying & sending our love.

~Love Sharon

Anonymous said...

Dan, I hope you'll be more comfortable once you have the iv. I'm so sorry to hear about everything you're going through. I hope you and Meg can find some other fun diversions to help keep your minds off of everything else for a little bit. You're in my prayers!! Katie

Mary said...

Hey Danny –My love and prayers go out to you and Meg. And even though I've never met Meg I can tell through your blogs that she is an amazing person to have in your corner.

I absolutely loved the Smoothie King/Towing Co blog. I'm actually pretty sure my car was towed to that place in Rockville when I lived down there. My parking tag had fallen off my rear view mirror and was sitting on the dashboard – completely visible. Persak was the lucky guy who got to tote me out there to get my car. And, if I remember correctly, Meg, you are absolutely spot on with the troll-like reference.

I was home in the burg this past weekend for my dad's birthday and we had a Kelliher family pool tournament. $1 to enter – made for a sweeeet $8 prize. My 85 year old grandmother ended up winning the pot. Go figure. What YOU will find most interesting, however, is that this “pot” holding the grand prize was actually my dad's Waeger Cup hat.

We are all praying for you Dan. Stay strong – you can do it.
Love and Hope, Mary

Michael Bergin said...

Dan - keep the faith! Your ability to reach out into the cancer community for the best thinking is invaluable.

Peace,
Michael

BJJ CailĂ­n said...

Hey Dan,
I just came across your blog by chance online. I'm really sorry to hear about some of the difficulties and complications you are having.

I wish you and Meghan the best. my thoughts and prayers are with you both.

p.s. I really enjoyed the towing company story. It made me laugh! I'm glad you all gave them sticky coins!

Best,
Jen

Kalisa Owens said...

Dan & Meg -- I am very sorry to hear about your most recent news. many hugs to you both and prayers of healing, energy, courage, strength and Gods presence to you.

Love,
Kalisa

Daniel said...

Big Beef,
I'm very sorry to hear about the recent news, but you should know that your positivity through everything is a true inspiration to me. I'm looking forward to seeing ya again soon and catching up. I'll be checking your blog for further updates. Waeger Will Win! -Little Beef

Anonymous said...

Oh, Dan and Meg,
I've been trying to image how hard the most recent medical news has been for you, and no matter what I imagine, I know it doesn't come close to what you are actually experiencing. Yet, when I read through your post a second time, I was amazed again--for on you go, making the life adjustments you need to make, taking on the inconveniences in stride, minimizing some of those inconveniences, and carrying on as you remain engaged with life. You're so inspiring, Dan--you have got such strength, such will. So now maybe it's a matter of adding another component to this whole machinery of treatment--and that is of imagining yourself healed, seeing yourself healed, Dan, and feeling that you are healed. Literally, visualize with your thoughts and with your feelings that you are healed, picture yourself fully healed. With the medical treatments, with your strength and will and positive mindset, with Meg, with all the supporting prayers from your loved ones, add the thought and feeling of being healed (not the wish), but the actual belief and feeling that you are healed--it all works together. I wish you both peace, complete health, joy, and much love. cousin P

Dayzees227 said...

Dan -

One pregnant man in this world is enough!! and it is not you!!!

I wish you were able to have a copy of the video with the guy from the towing company counting the coins! That would be great for America's Funniest Videos!! Too bad we did not live closer, we could have added our coins.

Thanks so much for supporting Scottie on his website. Just as we have faith and hope for him, we have faith and hope for you and Meg. You are not alone in this and many, many people are thinking of you EVERY DAY.

Remember the wristband: WAEGER WILL WIN

P.S. Brendan graduated in 4 years!

Love Momma and Poppa Z. and Carly

Anonymous said...

Meg and Dan,
I read your blog regularly and I can completely comprehend what you are going through. My husband has lymphoma, he had a stem cell transplant in May 08 but now he is in the hospital because he is having breathing complications with his lung, a result of lung GVHD. He's been in since Saturday and everyday I wish, pray and hope for a recovery so he can come home with me once again. It is so selfish of me to want him here with me everyday, and would like many more years with him. I know it's not his time yet. Cancer patients really do just want people to treat them normal...like they did before cancer. Cancer really does just become a part of our lives, we continue to live with it and live the best life we can as a couple. I wish many more happy memories for you. Stay strong and support each other. I'll pray for you as I am praying for my hubby tonight. You are in my thoughts a lot. God bless you.

Bianne from AZ