Wednesday, August 27, 2008

The Real Deal

One thing I think about when writing these entries is how far we should really put ourselves out there. You want to let people know what is going on. You want to be super positive 100% of the time. There is almost a pressure to deliver results. And then there is my belief that in the end, people don't really want to know the whole story. It's too frightening to go there. Think about the last time someone asked you how it's going- what would his reaction have been if you started going off about your terrible boss or financial situation? Probably shock because all he really wants you to say is "things are good" and move on. He doesn't really want to know the true story.

And with cancer, even if you ask, you don't have any idea what it's like until you live with it every day. I didn't, even though I had friends with cancer. On the one hand, you gain a whole new perspective. On the other, not too many people have that same perspective. So while you have a heightened sense of what is important & how precious a week can become, most people walk through life without the same sense of urgency. Those of us in the fight start to hold ourselves up to high expectations & put those on others. How unfair those who end up disappointing you when they have no idea!

I say all this not because I am upset at anyone. Even though some people haven't been present where we thought we would, there are more than enough people who, despite distance & personal circumstances, have reached out & haven't been afraid to ask how it's really going. Even though it's tough, it would be truly impossible to get through every day without someone sending good thoughts. We need those posts & emails to pick us up.

I say this because last night I realized how much pressure we feel in this situation, Dan moreso than me. We don't want to let anyone down. We don't want people to know we get sad & scared, and we cry. We want to deliver results. We want to juggle work, the foundation & treatments effortlessly & flawlessly. We wanted Alimta to work forever, and it's upsetting that something we were so positive about didn't end up providing a lifelong solution. We are nervous about the reaction to Tarceva. We are even more nervous that it won't work.

As you can see keeping this things between the two of us is a lot pressure to put on ourselves on top of everything else. I don't think it does anyone any favors not to acknowledge these things. So even though you may not really want to know, I'm telling you. Cancer sucks. It's scary & it's hard. And you need to be able to say it & move on to the next step. Let it out, take a deep breath & get moving again.

10 comments:

Jack Rodgers said...

Meg and Dan

Even though you didn't get the news you hoped for, your postings indicate there is recommnended treatment. Just keep taking one step at a time.

Regarding food and exercise, its okay to treat yourself to some bad carbs and a day off. I do it every now and then as a reward for practicing self-discipline most of the time -- otherwise life would be no fun.

As to sharing emotions about Dan's cancer challenge, sometimes it helps, but you have to be the judge. However, interested listeners (readers) any be hesitant to offer much response other than an acknowledgment because they are concerned about saying something that may not help.

DTB

KevinB said...

Hi Meg,

I agree with you. My F*#K Cancer t-shirt arrived the day before yesterday and I plan on wearing it to the hospital tomorrow and when I run in the Hartford Marathon.

Does Dan have the EGFR mutation? Has he been on Tarceva before? Have his doctors tested the recent biopsy for the other mutations such as EML4-ALK or K-RAS?

I have been on Tarceva, even though my doctors knew that I didn't have the EGFR mutation. The only thing that Tarceva did for me was cause me to have a moderate to severe rash along with inflammation that became bronchitis. If anything it caused disease progression because I did not have the EGFR mutation. My dosage was 150 mg/day. Usually, when you get the rash, that correlates to the drug being most effective. Unfortunately, that was not the case with me. I wouldn't want Dan to go through that nonsense.

Let me know...my email is kevin_brumett@yahoo.com or brumetk@wyeth.com.

Stay strong,
Kevin

Stephanie said...

Meg,

I can't tell you how very well I understand what you're feeling. I'm 28 years old and my boyfriend, Kevin, has lung cancer. (I know he's spoken with Dan; I've been reading your blog and have wanted to get in touch with you, too).

I get asked almost daily by at least one person or another how things are going for Kevin and me. Thankfully, right now I can honestly say that things are going really well. Almost great, in fact. But that doesn't mean that I'm not still worried and scared that things will change. I know that the co-worker who asks me at the coffee machine doesn't want to hear me say that a day doesn't go by when I don't feel at least a moment of sadness and fear.

I know that friends and family look to me for good news and reassurance. Kevin's friends don't see him everyday and when they get me alone they ask how things "really are". For their sake, I always want to stay upbeat and optimistic. That most certainly is a lot of pressure.

It's so hard because the stories we hear about cancer are most often about people with amazing spirits and positive attitudes who are fighting cancer with courage, grace, and unimaginable strength. Those are the stories that inspire. Kevin is most certainly one of those people, as is Dan. I think anyone dealing with cancer has no choice but to fight that way. But that's not the whole story. There are moments of weakness, of sadness, of despair. And they are so very real.

But you're right-- you feel those scary feelings, you acknowledge them, and you push it all aside so that you can continue to move forward with every ounce of positive energy you can muster.

But the fact of the matter is... cancer sucks. Even when things are going well, cancer still sucks. And you have no idea how much it sucks until you live with it every day.

I just want to say thank you to you and to Dan for so openly sharing what you are going through. Some people may not want to hear the whole story, but others of us out here need to know we're not alone.

You sound like such amazing people. I keep you both in my thoughts and hope for positive results with Tarceva.

All the best,
Stephanie

Pat Rodgers said...

Meg and Dan,

I know you're both unbelievably disappointed with the results of the doctor visit since those of us who are traveling with you feel that way and we can't know the actual experiences you are going through. Sometimes hopes dashed are almost too hard to handle. Thank you for reaching out in the midst of all this and actually helping us to cope. You should take the time to fear and cry - it allows you to move on with new strength. And I know you both will do that. We're in this with you 24 hours a day and will do whatever we can whenever you need it. And we'll keep up the positive thoughts.

Love,
Mom (R)

Anonymous said...

Meg and Dan,
its hard to know what to say. (I'm one of the guilty poeple who reads, but doesn't post).

You guys are amazing - going through this rollercoaster of emotions, yet dancing all night until your feet ache. Can we organize a dance marathon for cancer? You guys would medal.

It was lovely to see u in CO, we are so glad you could make the trip and enjoy a bit of rocky mt high =)

xo jen

Anonymous said...

Meg, I just checked to see if you had anything to add after the doctors visit yesterday. I thought you would and wanted to get a sense of how are doing. You did such a good job of expressing your feeling in this. And, I don't know what to say except how much I wish and pray for you guys to get through this and for there to be real positive results from the new treatment. If you ever just want to talk, you can call. I can hide in a room so my little ones can't find me. Thinking of you! Katie

Anonymous said...

Guys-
We tried posting a few times - and each time it didn't take - we'd love to get together this weekend if you guys are around and up for it - I can't imagine what your emotions must be like right now, but while we are not good posters/callers/emailers - we are always here for you however you need us to be...we just need to be told how to best support you... Mike says "remember "boats and hoes"..."
M&N

Anonymous said...

Hi Dan and Meg--- I will continue to keep you both in my thoughts and prayers. I wore my Waeger Will Win t-shirt to the Irongirl Triathlon last weekend (as I do every race for good luck) and a girl asked me if I went to McDaniel and knew you. Just wanted you to know you were famous Dan!! Take care, Becky Arnold

Anonymous said...

Hi,

If you haven't found it yet, www.WebMD.com has a terrific section on 1,000s of drugs and reviews by people taking the drug. Here's a link to the Tarceva drug which 8 people have reviewed...

http://www.webmd.com/drugs/drugreview-92160-Tarceva+Oral.aspx?drugid=92160&drugname=Tarceva+Oral

I've been on Tarceva for most of the past two years. It's been used in conjunction with other chemotherapy agents. My current regiment is Avastin every 4 weeks via IV and 150 mg of Tarceva via pill daily. Tarceva side effects for me have been minimal. Some rash on my nose, checks, and back that clears up very quickly with a topical steroid (also something prescribed). I use that as needed, but usually just once or twice a month.

Right now, whether it's the Tarceva or the Avastin or whatever, something is working and I'm in a NED state.

I wish you the best.

Ed
www.hncancer.blogspot.com

Cindy said...

Megan,
Some days you just have to let it out. You feel much better after ward. Just know it is OK to cry and be mad and just scream. No one ever said life is going to be fair and somedays you don't have the strength to make the best of it. We all have these days not just you.

Cindy