Thursday, February 26, 2009


We try to keep up with the Livestrong Twitters as much as possible- both Doug Ulman's & Lance Armstrong's (Hey Devon- Dan wants to know where yours is!). I think it's pretty cool/amazing/spot on that Lance completes his rides, and then goes straight to advocating and meeting with cancer survivors.

Thanks to the Twitter faithful who let us know that Dan got a shout out on Lance's Twitter tonight. It was getting kinda heavy in here, and it was good to see the message

Go Dan Go!! http://waegerwillwin.blogsp.... You are in our thoughts and prayers! from web

Wednesday, February 25, 2009

One Day at a Time

On the plus side- Dan's stitches appear to be healing. After a near-breaking point incident last Saturday and the trip to emergency room, we are happy to say that we haven't had any more problems with the drain- not even one little leak. It's like the great powers above knew it was time for the drain issues to cease. Dan is scheduled to have the stitches removed next week. For the most part, it has become part of the routine.

On the downside, Dan is feeling more run down and short of breath... new issues to deal with, and ones that are a real challenge. He started with the full dose of the new chemo pill last night, and hopefully it will kick in and beat back these symptoms.

Thanks for all your cards, emails & posts. They give us a great boost. It can be tough to get back to everyone, as we're very focused on getting through the days. But know we read & re-read them all. We're getting the hang of coordinating rides for Dan and balancing my work schedule, but it's still not easy. Although it's a little easier now that Idol is down to the Round of 36, Tiger is back (and on live TV on a Wednsesday), and even Phil managed not to choke!

Dan's sister Cindy is visiting from Hawaii this week, and it's great to have her & little Caroline visiting with Dan during the days. We're getting our families together this weekend, which will be nice for everyone. Plus we get to meet Dan's dad's new puppy!

So just pray that things get better- one day at a time.

Monday, February 23, 2009

Drain - O

For the most part, the drain has been the source of our frustration the past few days. Not the drain themselves, but the stitches were leaking last week. So on Thursday, I went to Hopkins to have the one area stitched better with 2 new stitches. Unfortunately, two days later we had one of the toughest days yet.

On Saturday AM, I woke coughing and throwing up a little. I think all the pressure on my abdomen pushed the stitches apart and my abdomen pretty much turned into a leaky faucet. My dressing was dripping with fluid every 30 minutes. Having to repeatedly change the dresssing soon became very annoying and frustrating for Meg and I. By 11pm that night, we finally got worried because it wasn't stopping and so we went to the Emergency Room by our house. Fun. Fun. Fun.

It actually wasn't too bad, but we were there from about 11pm to 1:30am. Knowing that my situation is complicated, we were very weary of who would be attempting to fix the problem. Well, so was the ER doctor and so we all agreed to actually do nothing and hope that laying down flat over the next 24 hours would alleviate some of the problems.

When we got home, we put on probably the 10th bandage of the day on. We put towels on the bed and around my stomach. We took every precaution necessary and I was ordered not to move. Low and behold - it worked (knock on wood). It's been dry so far since that incident. I can't explain it, but let's hope it stays that way. I actually went to Hopkins today to get it checked again and they agreed to do nothing for now. I'm just nervous the next big cough or nausea reaction might rupture the stitches. Let's pray it doesn't and everything heals so we can move on!

Friday, February 20, 2009

The Giving Tree

I told Dan recently that I feel like he is living the “The Giving Tree”. You remember the Shel Silverstein story where a tree and a boy become best friends, and the tree happily obliges the boy’s requests. He gives the boy shade, apples to eat & his branches to a build a house. The boy gets older, and just keeps taking until he finally leaves the tree a stump after he cuts it down to make a boat. In the end, even after the boy had long sailed away, the tree provides him (now an old man) a place to rest.

There are two ways to look at the story- from the tree who’s first inclination is to give of itself or the boy who’s only inclination is to take. Relax- I am not trying to draw a comparison between the boy & cancer hacking away at Dan… so please don’t be alarmed. I identify with the story as it relates to a person’s (in this case- a tree’s) demeanor & will to keep giving & living selflessly, no matter what is taken from them. Where some would see the tree becoming smaller & smaller at the hands of the selfish boy, I always took more from the story’s other message. To me, I always remember that even though the tree may have sacrificed some parts of itself, it could still find something to give, and still kept living.

Like the tree, Dan has sacrificed some good physical parts of himself over the past few months. I have been amazed to witness how much the human body can take, and just marvel at what he can continue to do mentally. Take Dan last week- what would you do if your stomach literally filled up with fluid, smushing your insides and make it hard to eat or even sit comfortably? If all that he had been through wasn’t enough, I really feared that this new hurdle would be his undoing. Most people would just shut it down. But Dan insists on getting a tube put in him so that he can feel better to get back to work. Granted, sometimes his ambition is slowed by the reality of the situation. But the will to live the same way he always has, with the same attitude… is part of his DNA. Just like that tree was “rooted” in giving and living no matter what was the boy took from it. Dan is just like that darn tree! You can strip everything else away, but what remains is still the best part. I mean, would you still insist on doing the dishes even though you have the best excuse to get out of it?

Tuesday, February 17, 2009

A weekend in the drain.....

I wish I could say Meg and I had a nice relaxing weekend, enjoying each other’s company, and celebrating Valentine’s Day. Instead, our lovely Saturday was actually filled with Meghan and I learning to use the drain for the first time. The weekend was tough. I think we all thought, myself included, that once the permanent drain was put in place our lives would return back to normal or at least back to prior fluid accumulation. Unfortunately, that is not reality.

For the most part, my abdomen and place of incision was sore all weekend. More sore than I had anticipated at least. I have my pain meds to relieve the discomfort, but the pain meds ended up making me really drowsy and just wanting to lie on the couch all weekend.

So we drained the fluid on Saturday and this morning (Tuesday AM). We drained 350 ml (or 1/3 of a liter) each time. Since it is only 1/3 a liter, it is actually a good thing. But draining it at home still makes it sore for a few hours. I just think having the fluid going in and out of your body is not a normal bodily process and either the process of draining it or just the fluid itself makes me nauseas at times.

Also, this morning we noticed one of the stitch holes was leaking. Not a lot, but enough to soak through all the gauze. I called my nurse and we are just going to monitor it for now. The stitch is supposed to heal on its own and maybe my cough or the way I slept put pressure on it more than usual. We will just have to change the dressing more frequent and if it is still leaking later this week I’m going to call the surgeon and see if I need to go in for them to check it out.

SOOOO - Happy Valentines Day to us! Meghan has been great through all this and I cannot thank her enough for all her love and support. I finally started my chemo drug on Monday (a pill 2x a day). I’m hoping and praying for good results!

Thursday, February 12, 2009


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!

Wednesday, February 11, 2009

Say What You Need To Say

I am sure that Dan will update everyone with respect to next steps with respect to treatment over the next day or so. It took awhile to sort out, but he will get the drain put in tomorrow to help with the fluid retention. And yes, he kinda looked like the pregnant man.

We also don’t want people to freak out if we don’t immediately post a medical update. While we use this blog as our main form of communication, we also need a little time to digest things and let our immediate families know what is going on. Calls become really tough to handle… think of it- Dan has his parents and 4 siblings, plus my parents and my brother & his family, so if we were to even spend a half on hour on the phone with each, that is 4 hours of talk time! So don’t feel bad or worried if you don’t hear from us directly… we try to keep up, but I guess that is the downside of having so many well-wishers… not enough time to connect with everyone.

A very timely article was published in the USA Today yesterday about how to talk to people with cancer & about what not to say. I know many people have stated that it’s hard for them to post on our blog because they don’t want to say the wrong thing, which we can understand. But also realize that we check the blog quite often, and for us, it’s nice because we get to read people’s thoughts without having to directly respond. I know, it’s a bit selfish! And I also think that your comments bring comfort to those who don’t see Dan very often. I know it’s really hard for family & friends to be far away & feel helpless, so I have to imagine that reading everyone’s kind words & encouraging messages gives them a boost as well.

OK, enough pontificating. Here is the link to the article

Dan is actually quoted in the sidebar of the article. I like what he says about congratulating people when they tell you they’re a cancer survivor. I was really surprised by this response when we went to the LiveStrong summit in OH this past summer. Cancer survivors, both those in & after treatment, need to be congratulated for enduring what they do, both mentally & physically.

I would also like to add my own thoughts about what not to say.

1. If someone tells you that they or someone they love has cancer, please don’t ask if they are optimistic. This happened to my friend when she was diagnosed with colon cancer. What was she supposed to say- “No, they’ve written me off”?

2. Many people ask me if I need a break. Please don’t ask me that. Yes, these are tough times, but if I needed a break spending time with Dan, my fiancĂ©, something would really be wrong. I liked watching 5 hours of tv before I met Dan, so I feel I’ve been in training for some down time. Plus, my break is going to work everyday, so I get up & out & moving every day.

3. Please don’t tell us that you’re now thankful for what you have after hearing about Dan or that you’ve realized you don’t have it so bad compared to what we are dealing with. This is a backhanded way of saying we don’t have much or we have a really bad life. Neither one of us feel this way.

Now, if you’ve said some of things, it’s not something that we dwell on AT ALL. We know everyone has good intentions. But it’s just things to keep in mind the next time a friend or co-worker might be dealing with cancer. I think we’ve said it a 1,000 times, but the best thing for us to be as normal as possible.

I recently had to explain what was happening to my new boss. I think he handled it very well. He didn't say much other than to express his concern and support. He didn't put me on the spot with respect to a lot of medical questions. He let me say what I needed to say and then we just got back to business. All in all, A+ for him. And, I actually held it together!

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.

Thursday, February 5, 2009

Fighting Words

Many of you know that we received discouraging information from the doctor this week. I am sure we will write more about it soon, but the short story is that the doctor is very, very concerned about Dan's latest scan. A new treatment will begin early next week. So we've been getting geared up for it, but taking some time to ourselves. Forgive me if I don't let you in on all the details- we are still sorting them out. But we ask that you take those prayers up a notch.

Anyways, I had one of the worst meltdowns today, which ended up being a good kick in the behind. I went to Smoothie King (SK) to get Dan his usual but made the last minute decision to run and get a cup of coffee down the block before heading into SK. Well, I must have parked in that parking lot 100 times and never noticed that there was a sign that said that you will get towed if you walk off the lot & didn't patronize the stores in the little mall where SK is located. You can probably see what is coming next...

So there I was... walking toward the Smoothie King when I noticed my car was gone. After realizing what had happened, I barely made it into SK before beginning to sob. The guy behind the counter recognized me and thankfully, someone offered his cell phone for me to call the tow company. I apologized for being such a blubbering mess, and just kept saying that all I wanted was to bring a smoothie to my fiance who has cancer. Plus, I thought it was bogus that I got towed after 3 minutes, especially since I was going to Smoothie King all along! Anyways, I called the tow company and asked if they could please just bring me the car- I'd even pay double. I explained through my sobs that I needed the car in case we could get into Hopkins today for a procedure. The first time I called, a woman hung up on me. The next time, the manager told me that if I had a medical emergency, I should call an ambulance. So there I am with no phone or purse, no coat in the freezing cold, sobbing to total strangers in Smoothie King... wondering what had become of my life. At least the guy gave me a free smoothie.

When I finally came home, I was just totally beaten down. I just didn't think I could sink any lower in life. How could people be so cruel- I know that towing companies are pretty much the lowest form of humanity. And I'm sure they must get a lot of sob stories, but I couldn't believe that they hung up on me (twice!) and told me to call an ambulance. All for $158 dollars. I was dealing with people without souls. I eventually called back once I had calmed down because I still didn't know where my car was, only where to take my medical emergency. I tried to explain the situation. Again- same response. And this time- the guy told me that "we all have sh*tty lives". Well, that was the last straw.

I told Dan to call them back and asked if they accepted cash. And then proceeded to count out $158 in coins from the collection I'd been building for the past 3 years. If I was going to be treated like crap and made to waste 3 hours of my day dealing with asses, than they were going to have to feel some pain, too. Dan got in on it, and we decided that even worse than counting coins would be counting sticky coins. So after we counted out $158 worth of pennies, nickels, dimes, and quarters, we put them in strainer and poured Diet Coke all over them. Yes, I admit, this was pretty immature, but when you're down, and the urge to push back... it's tough to resist.

So off we went to Rockville, halfway excited that we'd get under the skin of the towing jerks, halfway excited for a distraction from and afternoon of heavy discussions. When we arrived in what can only be described as a dirty hole with equally troll-like characters, I shoved the bag of coins through the window. The manager immediately came back that he wasn't going to accept coins. Dan pointed out that the signs said that they accept cash, and that we had called to confirm this fact. The guy raised his voice, setting me off in a barage of things that can't be written on this blog since my parents read it. He even turned on a video camera on us - I guess he wanted to document a young woman and a bald, pale cancer patient in case we were going to leap through a glass window and attack 2 men at least 3 times our size. Anyways, Dan calmly kept asking for their written payment policy, again pointing to the sign saying that cash was accepted. The manager, conveniently positioned behind the camera, made a few rude gestures. Clearly, we were at an impass. After we refused to leave, the manager said he would call the police. Hah- I was like fine by us!

So we took our spot on the bench, waiting for the po-po. Note that we were actually pretty civilized (even me, after my initial verbal jabs). Just as I was saying we should pay & leave, b/c the guy was such a jerk, the police came- all 3 of them with guns loaded!!! We explained the situation to them from our point of view, and they went to interview the manager. They came back, asking us if we would go to a bank or pay by another method. I innocently said that my purse was in the car that had been towed, and that we didn't have a bank nearby. Dan calmly asked what was wrong with paying in coins, while it may not be technically "cash" it is still US Currency and a form of payment. The police officers seemed sympathetic after hearing the entire backstory, and you could tell they saw we were just pretty normal people who had been pushed a little too far by people who use predatory measures to make a buck. So back they went to the manager.

Somehow, the guy figured he could be rude to the police when they asked if he would consider taking the coins. He said that the police couldn't tell him how to run his establishment, even throwing a coin at their feet. Well, that was all the police needed to make the guy go in the back and count the coins. The manager was livid, but he painted himself in a corner. We just chuckled to ourselves watching the 3 police officers smirking at the situation, clearly enjoying that they were making the guy pay for being a jerk. At one point, the senior officer came out and in a roundabout way, asked us if we had always planned on paying in coins. I explained that the only reason I decided to pay in change was to show to someone that he can't take advantage of a situation & use his position to make other people feel lowly and helpless. The police officer said that he was backing us up- because he didn't like the guy (or G&G Towing) either.

After about an hour, the manager came back out & gave in. My car was free! And the guy was made to look pretty foolish about calling the police, and more like just a stupid bully who takes advantage of people. Oh, and while we were waiting, we witnessed another man come in to discuss an estimate to fix his car which had been hit by one of the company's trucks. The manager refused to hand over his insurance information, and would only offer the man less than half of the body shop estimate. The worst part was that English wasn't the man's first language and it was clear that the manager was trying to take advantage of him. Good timing- the police took all the information with respect to the incident, and the man will get his car fixed.

You may be reading this thinking that we are a little crazy. I may have recovered from the car towing and the Smoothie King waterworks, but I wasn't going to be treated so poorly and without an ounce of decency. If you ever gotten your car towed, you know how unpleasant the experience is, and how creepy the people are that run the operations. You have no power and no leverage. And we were coming off a few days where we were feeling the exact same things in life. So forgive us if we wanted to take out our anger on something and fight back a little. Dan & I make a pretty good team, and it was good to be reminded of that... and take down the bad guy.

You mess with the bull, you get the horns.

PS- Dan says that his favorite part of the whole story is that, as we were parking the car to go to dinner, I turned to him & said in all seriousness "You know, I'm not going to mess with towaway zones, but I'll still roll the dice when it comes to not putting any money in the parking meter."