Thursday, October 30, 2008

Why does your hair fall out?

Chemotherapy drugs are powerful meds that attack rapidly growing cancer cells. Unfortunately, these drugs also attack other rapidly growing cells in your body — including those healthy cells that control your hair among other things. Having your hair fall out post chemo is weird. For me, this is my second time around with hair loss. I’ve learned from previous experiences that you just have to shave it right away. If you don’t, the hair will accumulate on your pillow, on the couch, or in the sink or shower. Clumps fall onto your shirt or into your hand as you rub your fingers alongside your head. For most cancer survivors, it is an experience they will never forget. Just like remembering where you were on 9/11, or for older adults when the Challenger exploded, or for Meg when the Red Sox finally won the World Series – I remember in a split second the two times now my hair started falling out.

Even though I never really had much hair to begin with, it’s still sad when it happens. That sadness is not for vanity reasons, at least not for me. While I know it’s no big deal, as a cancer survivor your hair falling out still represents a moment in time that unhappiness wins. Unhappiness wins as a result of cancer having a physical presence in my life. On days you want to forget, it’s there to remind of the fight that lies ahead.

I’m lucky I have a decent shaped head that looks better than most other aging males. I'm lucky I found a wonderful woman that will still love me. I'm lucky that bald is the new look in Hollywood and I'm just another star waiting for my shot at the big screen.

There are few other perks of losing your hair! I won’t have to shave, worry about an embarrassing nose hair sticking out, or sweating profusely – all the guys know what I’m talking about, especially you Bill. Ok - tmi...

Wednesday, October 29, 2008

Waeger Cup Pictures

As Dan said, it was a great day and a great turnout for the Waeger CUP. With the money we raised, we will be able to give out at least 10 scholarships through NCCF. That is the next to do on the list!

Here are a few pictures from the day. The last is actually from me shaving Dan's head. Weird timing, but when we got home from the Waeger CUP, Dan's hair started falling out (not that he had much to lose). Having never seen something like that before, it was a bit weird. But then I insisted on giving him a nice side mohawk. What do you think?

Me & my Dad on the course with our sign

Niece Brielle sleeping through the festivities

Dan with Rusty & Julie, winners of the autographed Lance Armstrong Sports Illustrated cover from the raffle. A special thanks to the Lance Armstrong Foundation for supporting NCCF. They helped us raise over $3,000 from the raffle and auction with donated items!

Dan's friends presenting him with a collage & check from their recent fundraiser at the Federal Hill Lounge in Baltimore.

Dan, Erin & Justin with the collage and the nice big check!!!

Dan and the Waeger CUP winners

Dan and the Toilet Bowl champs- repeat victors

Dan with a classy new 'do

Monday, October 27, 2008

4th Annual Waeger Cup

The golf tournament was a huge success!! It was so good to see everyone – high school friends, college buddies, family friends, friends of friends, Meg’s family, my family and everyone come together. There were 108 golfers total and I know we raised lots of money!! ($$ totals will be updated later in the week…)

In the morning, Bobby, Lindsay, Holly, EJ, Meg and I were at the course early for registration. With my raspy voice, I tried to check everyone in, hand out “cancer sucks” buttons, and make sure golfers received their participant gift (green Waeger Cup t-shirts this year). While it’s not a lot of time and it always seems so rushed, I enjoy registration as it’s the ONLY time I actually get to see everyone, say hello, and thank those that show their support.

As for the rest of the day, I tried to take a little step back from managing the day to day minute details. My voice was still raspy and my energy level was probably at 75 percent. It still was above and beyond my expectations especially considering where I was a week ago. I really want to thank so many for helping. Meg led the day by thanking all the participants over the megaphone. With her heart on her sleeve, the few words that came out were perfect and just reminded us while we were all there.

My brother and his wife Lindsay get the award for traveling the furthest as they flew in from California just for the event. My brother handled the silent auction and raffle too which deserves a big thank you. For anyone that has ever run an event, know that it’s an overwhelming task, so I’m appreciative that I could float around and actually get to eat the steak dinner for the first time in four years! I want to thank the golfers that drove a long distance, the friends that came up to Meg to introduce themselves, my sister Patrice and all her friends that came to dinner, the Dorns and Lose families for all their help, etc. There are so many others I want to thank but I can’t mention everyone. However, I need to thank Mike Caporaletti, long-time friend and owner of Royal Oaks Golf Course, and his wife Angie for their work on this event. Talk about a family event, during dinner Mike is back in the kitchen cooking steaks while Angie is out there scooping beans and corn for people in the food line. Being in the service industry is sometimes tireless, but I know it wouldn’t be a success without their help.

The Waeger Cup has a lot of different meanings. For me, it was something I could do to turn a negative event in my life into something positive. It’s a date everyone puts on their calendars and counts down the days till tournament time. The past three years, I’ve always tried to educate my friends on cancer, the issues, the experiences, and life as a cancer survivor – even before the blog. I invite them to chemo sessions, email them when I’m struggling, and celebrate with them when times are good! This tournament, for me, is about helping others who can’t help themselves. It’s about raising money for people who need it. The Waeger Cup is really the Foundation’s only fundraiser and I know I’m going to be in the spotlight that day. However, last night, Tom Marshall and my other McDaniel College friends, put me in the spotlight in a way that I’m not accustomed to.

Tom Marshall and Justin Arpan held a fundraiser at Federal Hill Lounge in Baltimore the week prior. It just a short notice, they organized an event, had over 30 of our friends show up, and had the bar donate 10% of it’s earnings to my foundation. Overwhelmed by the support and cause, the bar owner upped the ante and did 20% for multiple nights. Justin and Tom presented the check and money last night at the Waeger Cup totaling $1120. Those that know me would say I enjoy being in the spotlight, but being presented with the money left me speechless. I quickly handed the microphone to my brother because I didn’t know what to say. As Meghan and I talked on the way home, it’s not about the money but inspiring my friends to care about a cause as much as I do and to care about something bigger than themselves. Thank you.

As for golf, my team came in 4th. Our secret weapon was missed, but the replacement held his own. I'm glad my friends, Stoney, Mini, Rip, and Charlie won. They were graceful in their victory, but know that I'm frustrated for not bringing home the trophy. Even when I'm not feeling 100%, I still can be competitive and frustated can't I? After all, Tiger Woods only wins 26% of the tournaments he enters. We'll get 'em next year...

Pictures and other details to follow...

Thursday, October 23, 2008

You Say It Best, When You Say Nothing At All…

I officially have no voice. Over last weekend, I developed a severe sore throat. It was so painful and difficult to swallow, my throat was just raw. While I’ve had a lot of side effects the past 10 days, this occupied the majority of my frustration. I’m happy to say that it is finally improving! Yesterday, I put down a little food and tonight Meg made a wonderful Shepherd’s pie (she loves mashed potatoes). However, eating a solid meal is a big step for me.

Looking back over the past 10 days since chemotherapy, I’ve not eaten much. The first two days I was pretty nauseous. Over the weekend, my stomach started to return to normal, but my coughing was still ever present. I knew I wasn’t getting enough calories, so Meg would either create a homemade smoothie of yogurt and fresh strawberries in the morning or bring home a 1,000 calorie one from the Smoothie King. As a cancer survivor going through a tougher chemotherapy regime, you don’t want to lose weight. I could tell I wasn’t getting enough calories, so the smoothies were perfect and the only saving grace for my sore throat. In my opinion, last Tuesday they prescribed an inhaler to help with the cough and that’s what I believe initiated the sore throat. I’m not sure that’s 100% the reason, but a reaction like that can happen.

Meg has been wonderful. In my opinion, the past week has been probably one of the toughest weeks I’ve had in a long time and she has been there supporting every step of the way. The side effects, related or unrelated, just seemed to mount and come together all at one time this cycle. The only new experience for me was a little bit of neuropathy in my fingers. Neuropathy is tough to explain, but your fingers just feel a numb, tingling sensation like they are asleep. You have difficulty gripping objects and it can be somewhat painful at times, but the good news is that in only lasts a few days.

Anyways, I’m still exhausted but I’m feeling better today! It just looks like my voice is catching the aftermath. I really can’t get out more than a squeak.

This afternoon, I went for more blood-work. We will find out tomorrow if my white counts returned to decent levels. The results from earlier this week put them at critical levels. For those that don’t understand, your white blood count controls your immune system and ability to fight off infections. In simple terms, I can’t fight off normal germs from a hand shake or everyday contact. A simple cold could throw a person with a low white blood count in the hospital, so that’s why you have to be careful, avoid crowded places, and watch out for any sign of a fever. I’ve been doing well so far (knock on wood) and hopefully the counts tomorrow will gain some ground on the positive side.

I’m looking forward to the golf tournament on Sunday and seeing everybody. Putting on an event is a lot of work from a lot of people. I’m forever grateful once it all comes together and everybody is out there having a good time. In terms of my golf game, I haven’t practiced much lately, so I’m hoping my teammates come through and pull us to victory. I’ve played with the same 3 guys every year, my two best friends from college and former teammates Serge and Joe, and our 4th was our former assistant coach. Unfortunately, coach Diehl has a prior commitment, but we will represent him well and bring home the first place trophy!!

Wednesday, October 22, 2008

Update & Guest Blogger

We are going to have a guest blogger today- Dan's friend Serge. A quick update before we get to him.

Dan's WBC (white blood cells) are low, which increases the risk of infection. So new medicine has been ordered to address that issue. The sore throat and cough are still there. Dan's voice is very raspy, so he can't talk as much as normal. And he is still wiped out. However, he is in better spirits and very focused on recovering.

We are gearing up for the Waeger Cup this weekend- rain or shine! Hopefully Dan will able to play a few holes. A lot of people have put in great effort to put the event on, and we're looking forward to raising lots of money for NCCF and young adult cancer survivors.

Ok- here is an email I received from Dan's friend Serge (I am told his real name is Alden, but all of Dan's college friends seem to go by names that have strange backstories)....

Meg wrote a while back about what to say to Dan when you didn’t have the words – concluding in the end you should always say something. After a prolonged period of denial that Dan was battling cancer, I had plenty of questions, only no one to really answer them. I wanted to know the drugs he was on, how it worked, why the radiation kills the body so much, how long it would be before he got his hair (what little he had), back. I never asked Dan any of those questions.

Why I didn’t ask them is simple – if Dan felt like talking to us about the cancer he would, otherwise my questioning would just remind him of the battle he faced. I figured the best thing I could do is treat Dan like I always did before, I would get my answers in due time, as I have. I wouldn’t baby the kid or sit around feeling sorry for him. He’d come stay with the roommates and I – we’d make fun of him, he’d mock us right back. He’d eat all the food, leave without a thanks for the hospitality and be on his way. Though he was sick, I think he was able to best be himself.

After Dan was first diagnosed, I said to a buddy, “Of all the people I know, and if absolutely had to pick someone to battle cancer it would be Dan.” I’m still not sure if it was an appropriate thing to have said, but I said it. I said it because of everyone I know Dan is the person that will not only beat cancer, but turn the battle into an opportunity. He just has the attitude that is needed. It rubs off on people. I think after his first chemo session he was already planning his foundation. Anyone who has ever met Dan, or has even read the blog, likely knows what I am talking about – where he gets that strength I don’t know. His family likely helped, friends possibly, and now Meg certainly helps – or maybe he was just born with it.

Dan switched to a new drug this past week, one that is a bit more severe and may be a bit more taxing on his body. He sees the new drugs as another opportunity to show his strength and another step on the path to being declared NED. Once that happens, Dan will spend more time growing his foundation and continuing the overall war against cancer. As for me, I’m stuck playing golf with Dan this week, but on the plus side that should provide ample opportunities to mock him.

Monday, October 20, 2008

Not There Yet

Well, the distance around the corner is proving to be a bit longer than we thought. The newest development is a severe sore throat which may be due to thrush or just repeated coughing. I've never been able to relate to any of the physical things Dan goes through before, but this is one I can relate to from a case of severe mono from high school. All we can do at the moment is try anything that helps- popsicles, jello, smoothies.

We will also be getting bloodwork done today to check Dan's counts. The treatment makes him more susceptible to infections, etc because it knocks his immune system down. Hopefully they will be ok, and the sore throat will resolve with the thrush medication.

While observing this whole experience can be somewhat surreal for me, what is very real is Dan's determination to get well. Other than saying that his throat hurts, Dan never complains and is very focused on getting better. If we could bottle whatever unwordly determination he possesses to get through this- we'd be rich and cure cancer!

So we are hoping for two things- improved response to the side effects so Dan can play in his golf tournament and good weather for the tournament. So as you go along your way this week, if you wouldn't mind sending a few prayers for those two things, we'd appreciate it!

Thursday, October 16, 2008

Turning the Corner

When does it occur? When do you turn the corner? When do you start feeling normal? That’s what I’m wondering these days. Every time I feel like I’m taking a step forward, I take the same step back. It’s tough. I know all you can do is rest & relax, drink lots of fluids, and hope for the best.

Last night, Meg made a wonderful grilled cheese and tomato soup. I think it was Meg’s first time at grilled cheese, or as she says since college. She’s showing a lot more of her domestic side these days and actually enjoying it. Grilled cheese - such an easy meal and now Meg’s favorite! Unfortunately, I couldn’t keep it down. As I said, you start to feel good in one area, but take a step back in another. So far so good on tonight’s dinner! Anyways, I’m looking forward to turning the corner. I know it won’t be long.

Tuesday, October 14, 2008

Back on Course

As we were driving home from chemo today, Dan and I were discussing that there are probably a lot of questions swirling out there about the change in treatment and our overall general life these days. When we heard waaaaaay back in June that we were going to have to switch treatments, we were all geared up for an immediate change to our lifestyle. And that didn't happen right away- we traveled and were more busy than ever. Perhaps we, along with those around us, were lulled into a sense that things weren't really going to change. I think for those that stay in touch by reading the blog, this is especially true because when we read, it's tough to gage the real tone or intentions sometimes.

As Dan wrote in his last blog, the decision was made to stop Tarceva (pill-based medicine) and move on to a more rigorous chemo treatment. The growth between the last scan two weeks ago and the prior scan in September was more than the doctors were comfortable with given the short time span. This, along with the return of the cough, left little doubt that it time to move on.

Dan will have 2 rounds of Avastin and Taxotere- the more traditional drip chemo that requires an IV. He had his first round today, and the next will probably be three weeks from today, assuming the schedule works out. Three weeks from the second treatment, right around Thanksgiving, he will have another scan to see if the treatment is working- meaning that the cancer is either stable or decreasing. This treatment regime is more severe than what he was on (Alimta) for almost 2 years. So, he may lose his hair and we will need to watch his blood counts more closely. I don't care about his hair- as long as he doesn't lose that smile that I love!

I know some people wonder why they can't just take the cancer out- I thought the same thing myself. Most likely, the could remove the spots on the liver. However, surgery alone wouldn't remove the underlying cause of the tumors which is why we need chemo. And as long as they aren't doing much damage, the tumors are actually helpful in seeing if the treatment is effective by monitoring their size.

As far as today- it really wasn't anything new. Dan has been at this on and off for almost 3 1/2 years, and I have been with him for all but one appointment in the past 15 months- we were on familiar ground with familiar faces. The treatment lasted about 3 hours, plus the normal time for bloodwork & processing. Aside from being a little tired, Dan is doing well, and we are waiting to see what side effects hit over the next few days- Dan hasn't been on these drugs before so we aren't sure what we are dealing with yet.

You may want to know what you can do for us- We don't need anything other than 100% positive focus & prayers for good results in 6 weeks, and that the side effects are manageable until then. As Dan said- things will have to get worse before they get better, so we are trying to prepare ourselves mentally for even more down time in the weeks to come.

Emotionally, you go through the wringer a bit before stepping back into treatment. There are a lot of thoughts that make their way into your day- most of them aren't ones that are easy to share.

A few weeks ago, I was reading the blog of a pastor dealing with cancer and was reminded of the story of Pandora's box (which I think was really a jug). You may remember that the myth explained the origin of women. When Prometheus stole fire from the gods and gave it to the humans, Zeus enacted revenge. Zeus sculpted Pandora from clay and bestowed her with many wonderful traits- beauty, wit, cunning, charm, etc. He also gave her a jar and told her never to open it, and then shipped her off to Prometheus to marry. Prometheus didn't fall for it, but his brother did and married Pandora.

One of the traits Zeus granted Pandora was curiosity, and it eventually got the best of her. She opened the box and out flew hate, anger, jealousy, sickness, poverty and every awful thing in the world. You can imagine how horrified she was when she realized what she had done. Then she noticed one last little sprite struggling to get out of the jar. Deep down inside the hateful jar was the only thing that sustained humanity in its times of sorrow, pain and misery- hope.

I am sharing this story today, because it reminds me of two things. First- you have to get all of the negative out in times like this- they are in there and can be too much to hold back. And even though those are tough emotions to go through, hope will eventually sustain you. After all, it takes a lot of energy to deal with negativity and counter-act it. Second, it's much easier to hope for the best possible outcome. Even a little sprite like hope makes all the difference going up against the big guys.

As my mom said to me back when Dan was hospitalized at the end of April, when every single doctor (erroneously) told us the cancer had aggressively spread- there is nothing wrong with a little hope.

Sunday, October 12, 2008

New Treatment

I talked to my doctor at the end of last week. We both agreed to move past Tarceva. On Tuesday, I'll be starting Avastin / Taxotere combo. It's traditional chemotherapy in the sense that it is given in iv form. I'll go once every three weeks. We may eventually switch to a Friday schedule, but we just wanted to get started for now.

As they say in sports, Tarceva just had my number. I don't regret my decision to try Tarceva twice because at the time it was the right thing to do. When we first went through the decisions to switch once we realized Alimta was no longer effective, my doctor had recommended Avastin and Taxotere combo. Both of these drugs I've never been on before. Even though they are new to me, they are commonly used therapies in the lung cancer world. Their toxicities or side effects shouldn't be too bad. I'm optimisitic about being able to tolerate it without too many complications. Let's just pray it's effective!

Wednesday, October 8, 2008

Switching Gears

Unfortunately, Dan's cough has become persisently worse. It's unclear what the cause is- possible infection? pneumonia? reaction to Tarceva? Whatever the cause, this week has been the first time in a long while that we've been living with the physical presence of cancer. It's no fun. It stinks. Not only is it tough to sleep more than a few hours, but it's even worse for Dan b/c he hasn't been able to do much but relax because the cough is so disruptive. As I write this, Dan is off to pick up more cough medicine. Hopefully it works well enough to get him back on a more normal schedule.

Next steps- back to the oncologist on Tuesday. Chances are, the treatment will change. But right now, we are more anxious to find some relief from the cough. On the plus side, it has given us a chance to try some new soup recipes since soup seems to help. So if anyone has any good ones, send them our way. On tap tonight- stuffed green pepper soup. And yes, I do cook!

Sorry we don't have better news- such is life sometimes in cancer world. At least we get 2 installments of the Biggest Loser this week! So we'll be hunkered down tonight with Loser and the finale of Project Runway and soup!- not too bad.

In case you're wondering, Dan is picking Jerrell to take Runway. Note that his pre-season picks were booted off the show in the first 3 weeks. My pick- Kenley- made it all the way to the finale. Dan's TV picks are usually about as good as his football picks- and he was out of his football pool in week 4.

Tuesday, October 7, 2008


We went to the Philadelphia Eagles vs. Washington Redskins game on Sunday. It was good to see my sister, brother-in-law, and nieces. Although the Eagles lost, the game was exciting and the weather was perfect.

The thing that sticks out most in mind, however, was during a timeout. Sylvester Stallone, or Rocky Balboa, came onto the jumbotron. With his hands taped and cut-off shirt looking like he just beat the Russian for the 2nd time, he said, “It’s not how many times you get knocked down, but how many times you get back up.”

This couldn’t be more true regarding life with cancer. The very nature of chemotherapy is to knock you down. To beat the crap out of you. To bring you to submission in hopes of killing off the bad cells. Emotionally, cancer does the same thing. It knocks you down. The emotional toll is a lot, not just on me, but on my family, friends, and even more so for Meg. No one or nothing can prepare you for it. You get knocked down again and again. You just have to keep getting back up.

Wednesday, October 1, 2008

More on the Marathon

So Dan “borrowed” my cancer-is-a-marathon-not-a-sprint analogy in his last post (what- did you think he comes up with these things all on his own?)… here is my point of view…

My whole life, I’ve been kind of a slacker. For those that know me, you may wonder how I can be serious about that comment. But I am a total slacker. I look at other people who actually make long term goals and work towards them in total awe. For me, the challenge in life has always been about figuring out how to do things and then, just exactly how long it will take to get them done. I joke that this is just fabulous time management, but really it’s just laziness or a form of ADD.

While my college roommates studied consistently throughout the semester, I would do almost nothing if I wasn’t graded on it. Then, two days prior to an exam, I would shift into turbo-drive and lock myself away until appearing at the test sleep-deprived & running on Mountain Dew and Hot Tamales. Usually it worked out pretty well. I even implemented this tactic while studying for my CPA (passed), getting through business school (passed) & completing projects at work (still here- for now!).

I’ve always been slightly irritated at myself for developing these habits. I think it started young when I somehow developed a massive hatred of running unless it was during a game. Unless I could score a goal or knock someone down, I had no interest in the actual training part of sports. Unbelievable for someone who played soccer year-round for 12 years. I still think that I could have been a much better player, student & worker if I’d developed a consistent approach to working towards a goal.

When Dan and I agreed that we were both indifferent about the last visit with the doctor, it wasn’t meant to suggest we’re also ambivalent. Rather, I think we’re now always busy preparing for the next thing. Prior to the Tuesday’s appointment, I would twist myself all up in a bunch trying to mentally prepare for whatever news was to come my way- if it was bad, I’d try to think of what questions I would need to ask or what I’d immediately need to re-arrange at work or in life. But on Tuesday, I found myself taking it more in-stride than before. Maybe it’s because we haven’t had much good news yet, so I’m becoming de-sensitized to things. But I think it’s more that we have to keep focusing on always moving forward, even if it’s at a slow pace, to really beat it.

This is a real challenge for me… long range planning. But I also think it’s the first time in life I’ve been truly committed to something 100%. Even if Dan was pronounced NED (no evidence of disease) tomorrow, it would not mean the end of our fight. There is so much work to be done, both for Dan’s continued health and for the overall war against cancer. It’s a marathon, and one race that I think I’ll actually stick with this time. Sure, there will be times when we "hit the wall", but that is when we can lean on each other to push through.