Week 5 of Radiation Complete an update from William, the man behind the mask!

I hate clichés.  But I suppose they become commonplace because they actually apply, and over the past few weeks, it seems that when it rains, it really does pour.

Let’s go back to September 9^th for a minute.  I open the mail and get a bill from Cricket Wireless.  For $2,400.  There are all kinds of inappropriate jokes I could insert here, but I’ll just say that I am not a Cricket Wireless customer.  Nor have I ever set foot in one of their stores.  On closer inspection of the bill, I realized it was not actually from Cricket Wireless, but from a financing company that opened a line of credit in my name.  What really scares me is that not only did the phone purchasers in North Carolina get my name and address right, they also used the correct social security number.

So for the first time, I don’t even feel bad calling myself a victim.  I’m a victim of identity theft.  And here’s another cliché.  Why doesn’t the perpetrator have to take the good with the bad?  I’d even agree to it.  You take all my money, and you take the disease.  I’ve already basically agreed to that.  Ask my doctors.

The worst part about the whole identity theft debacle is that it’s like being inserted into a really involved scavenger hunt.  You call Company A, and they send you to Company B, and if you find the right hint after searching through their phone system for twenty minutes, you get to move on to Company C.  And if everything works out, if you play your hand perfectly, you get nothing.  Literally, that’s the best possible outcome.  Your credit score doesn’t get obliterated, you don’t have people hounding you for payments, and you don’t pay bills for things you didn’t purchase.  You get nothing.  Good day, sir.

And now I’ve written a very negative post.  Hopefully someone reading this has been through it and realizes how frustrating it is.

All in all, the past week or two has been very good, physically speaking.  I’m still handling treatment pretty well with only some fatigue.  I’m through week five of six with radiation with last treatment being on September 30, and I get a break for a month once that regimen is complete.  It will be nice, because I will finally be able to pretend for a little while that this is not actually happening.

Every night, Abigail has been involved in the treatment.  She doesn’t really understand what it’s all about, but she helps me gather up my pills, and sometimes she even likes to put them in my mouth and make sure I swallow them.  But a lot of times, she’ll say, “Daddy, is it time to take your chemo?”  And to hear that from your own little innocent daughter brings it home.  There’s no denying that it’s real at that point.  And even though she has no idea what it means and has none of the associations with chemotherapy that adults do, it’s depressing that in some way it’s my fault she’s being brought into that terrible world.  So getting through the first round of treatment lets me go back into that “ignorance is bliss” mode of thinking, for better or for worse.  There’s your two-cliches-for-one sentence.

By the way, it is nice to see the way support travels.  Everyone reading probably knows about or has purchased the Team William shirts.  Now I see people posting on Facebook pictures of their shirts and/or wristbands, and some even from people I’ve not yet had the pleasure of meeting.  Thank you for helping to spread the word, show interest, and spread awareness.

So let me close with a bit of a silver lining.  Two weeks after my surgery, M.D. Anderson put on a brain tumor conference at the Omni on the west side of Houston.  I had just seen them the previous Monday, and they tried to convince me to go.  So Eda asked her parents to keep the kids for the weekend, and we went.  Although the content was a bit dry at points, we met several people going through very similar experiences.  As much as it helps for people to try to understand what’s going on and how the experience affects me, I put more credence in a person who has actually experienced it.  In fact, just yesterday we hosted a lunch for a group of five additional families with brain tumors of some type or another.  And the conversation doesn’t even need to revolve around cancer-related experiences.  It’s just good to know I’m not alone.

One of them called me about a week and a half ago and said, “I want to come pick you up on Sunday and take you to the Texans game.”  And it came just at a time I needed it.  I try to fight the battle every day and keep telling myself, “It’s all right.  You feel fine.”  But it is a battle, and sometimes that’s not enough.  I do need to lean on people to pick me up from those down times, and I appreciate all of you who have shown so much generosity and help and willingness to do so.  It makes me realize that not only have I hit the lottery in terms of physical location with this diagnosis, but also with the people around me.

So I still need prayers, and in case you need guidance, here are some suggestions for this week:

1. That the treatment finishes as well as it started, and that I am able to keep pulling myself out of bed in the morning.  I get more support from the people reading this blog, but my mattress provides a lot of support too.
2. That our younger daughter decides to help as much as the older one by doing nothing.  Literally.  All night long.
3. That my wife and family can continue their battle alongside mine.  I realize I’ve left a lot of slack to be picked up, and it’s a big chore that they did not ask to do.
4. That the criminals in North Carolina change their evil ways.
5. I told Eda I wouldn’t reuse jokes, but I can’t help it.  Please, Irish, let’s pick up the pace.  I thought it would be cancer that would kill me, not a heart attack. 

*We all hope that you all will come out to the benefit on Saturday October 26, 2013 from 11-2 pm (see Flyer below)  
*If you would still like to order a Team William Shirt, you can.  We will have one more Team William T-shirt pre-order if anyone would like to order, and it can be picked up at the benefit if you choose.

Benefit Flyer

Super Team William going into radiation week 5

Super William

Bat-girls fighting cancer alongside Daddy!

End of Week 5 (well almost)

Audrey is on the investigation team for who stole daddy's identity!

 

Benefit

On October 26th, we are going to be putting on a Fall Carnival and Silent Auction.  All the proceeds will benefit William and Eda.  We would love for kids to wear their Halloween costumes, and adults can wear their Team William shirts.  We have lots of fun events planned... please mark your calendars and tell your friends, family, and neighbors!  Also, if  you or anyone you know would like to donate an item for the Silent Auction, please email Charlotte.  All our welcome....let's show the Lewis Family how much we support them!   Looking forward to seeing you all on October 26th!

*Update coming soon on William's progress.

*Many of you have asked how they can help support the Lewis family.  Here is a list of ideas.  Thank you SO much in advance for your encouragement and love.

Team William Shirts

Thank you SO much to all of you have bought Team William shirts.  Our first order is in the process of being distributed.  If you have not gotten your shirt already, you should be getting it soon! :)  The deadline for our second order is Saturday, September 21st.  We are so excited to show William and his family our support!    Thank you for the outpouring of love!

*Many of you have asked how they can help support the Lewis family.  Here is a list of ideas.  Thank you SO much in advance for your encouragement and love.

William, We ALL SUPPORT YOU!!!

The Man Behind the Radiation Mask (Written by William in his own words)

I just finished the halfway mark of having my head being zapped daily, so please understand that before reading what I have to say.  That means I’m going on my fourth week of radiation and fourth day of having “What Would the Fox Say” stuck in my head.  My family has learned to deal with me needing naps on the weekend and having the patience of a dictator, so I don’t feel like it’s a whole lot to ask.

I think enough has been written so far about my treatment and what it entails and how it makes me feel.  Those things can be repeated pretty easily.  I guess what’s hard to repeat—and honestly a bit difficult to say the first time—is what this whole ordeal has meant to me mentally and emotionally.

The first morning I spent in my hospital bed, a neurologist came in to talk about my MRI.  At first, he was beating around the bush a little bit.  “We saw some swelling in the brain…”  And after Eda finally beat him into submission by asking him to tell what he actually saw, he finally admitted almost offhandedly, “We think it’s probably a malignant tumor.”

I think it would have been easier to hear the news if he had taken it more seriously.  I always expected that a life-changing event would have a drumroll and an attentive crowd.  But this was just an offhanded comment like people receive this news every day.  Of course, people DO receive this news every day, but each person probably only receives it one time in his or her life.  I still held out hope that when they cut into my head they would find something other than what they did, but we all know how that story went.

Since I got married, and probably before, I always thought of my future in terms of when I retire and what I would do with my kids after college.  I have to accept not only the possibility but the likelihood those were just fantasies.  I was at Mass yesterday looking at Eda holding Audrey and Abigail hugging her knees, and I see my nightmare, which is bowing out of the lives of the people I love most. 

I hope no one ever asks me to read this aloud, because I’m having a hard time writing it.  So I try my best to believe that I’ll beat the odds and annoy everyone for a long, long time to come.

Please help with these things this week, which I feel I need:

1.  Pray for strength in my mental battle against the disease and its potential consequences.  It’s more difficult than I try to let on.

2.  Pray that I overcome my difficulty maintaining patience and find a balance with discipline for my children.

3. Pray that I learn to accept and ask for help when I need it.  I suppose I have a bit of an excuse to show weakness every once in a while.

4. Pray that the Irish do not continue to let me down.   A 41-30 loss in the last game of a huge rivalry?  Really?  It’s more painful than any treatment or symptoms I have.

*Many of you have asked how they can help support the Lewis family.  Here is a list of ideas.  Thank you SO much in advance for your encouragement and love.

Family Picture by Chubby Cheek Photography (Sholanda Chaddock)

  

Daddy and his super girls!

Called in the squad!

Daddy's fighting team!

Daddy and his girls!

Team Spirit!

Daddy's Irish Cheerleaders!

Daddy and Audrey in the sand!

Building Project at Home Depot - Making Memories!

Ups and Downs (Week 2 of Radiation/Chemo)

I hope that everyone is having a wonderful Labor Day weekend and enjoying some much needed rest, relaxation, and time spent with family.

William continues to do an amazing job handling his chemo and radiation treatments.  He is so strong!  Strong because of his faith and this unwavering support from all those who have reached out to him and are praying for him.  I am proud of him and the grace/composure with which he is handling this journey.  His biggest complaint remains the fatigue and his struggle at times with his emotions.  

On Saturday, he reached out to me and said he was really having a hard time dealing with "the idea that he is not going to be here long."  His words came to me in a text as I was out with a friend at the time.  He continued with, "It's depressing, and as hard as I try to think that I'm doing fine, I know that's just something I'm telling myself."

What do you say when you hear your loved one reaching out to you like this?  I want to make it all better.  I want to wake up from this bad dream and wish it all away.  However, all that I can do is have faith that God will work a miracle and heal him and that the MDs continue to work their hardest to help him.  I also have to help William in whatever ways I need to by making sure he never loses hope or gives up.   I just filled up with tears.  My heart aches to see my soul mate and the father of my children struggle with something that he shouldn't have to nor deserves.  I told him, "I love you! I'm not going anywhere and it will be okay."  These words I am sure were not enough, but I didn't know what the right words were.  I think sometimes just being present in the moment and listening is helpful, or at least I hope it was.  I reassured him it's normal to feel this way as he has had to swallow a lot in the past month.  A month ago his life was on a different, more "normal" path.

His texts continued with, "I don't even want to bother anyone with my stupid feelings.  I'm tired of making work and trouble for others.  I don't know why I am acting this way today.  I am just having a hard time."  "Everything I'm going through today is just an assumption for what the future holds.  I just can't ignore the facts every day." "I'm just having trouble pulling it off today."  "I feel like an Olympic gymnast where every practice they nail their routine, then it comes time for the performance, and they miss the beam.  I've been doing a good job most days, but not today, and I don't know why."  "I feel like I have let you, Abigail, and Audrey down and there's nothing I can do about it except not act like this around her."

How horrible it is to have to feel this way, and I don't know how to make it better.  It's in God's hands, and it must just be so hard for him to feel completely out of control.  I can't even imagine having to walk in my husband's shoes.  No one should have to go through this and feel this way.  It is so hard to understand.  He has never let us down nor will he.  I know he is going to fight like heck to beat this.  I am so lucky to have met William when we were just freshmen in high school.  He has been an exceptional husband - loving, tender, compassionate and always giving of himself.  He is my best friend and my soul mate.  He is an amazing father to my girls.  Just hate having to watch him have to live this and experience such a nasty diagnosis of cancer.  It is unbelievably hard... words cannot express how difficult it is to be his wife and watch the person you love so deeply hurt like he is hurt so badly emotionally and physically.  I can't even begin to fathom it from his perspective.  All I know is I will be by his side every step of the way.  This is just a bump in the road.  We went out to lunch and talked and spent the rest of the day together and somehow just being present in the day made it all "seem" better. 

Today was a great day!  We excitedly got Abigail back this afternoon from Pennsylvania.  She had a great time with my parents and her Aunt Bree.  It was just what the doctor ordered.   William was in much better spirits having his first baby back!  She is so much joy and is just the light of his life.  He got to take her swimming at the neighborhood pool tonight just for 30 minutes, as tomorrow the pools close for the summer.  He came home and said, "I feel good again!  I almost feel human!  Was great getting to take her to the pool."   Happiness to my ears! 


Specific prayers for this week:
1. Continued strength for William during his 3rd week of radiation/chemo and help with management of his fatigue.
2. Prayers that our baby, Audrey Grace has improved behavior with less screaming and more sleep at night.  Daddy can't handle the noise, and it is so hard on him as his tolerance to noise is lower at this time as swelling in the brain is beginning to be present from radiation treatments. 
3. Prayers that William will be granted more patience with Audrey.
4. Prayers that Abigail will continue to make Daddy smile every moment during the day.

*Many of you have asked how they can help support the Lewis family.  Here is a list of ideas.  Thank you SO much in advance for your encouragement and love.

Spiderman came to fight this battle this week with us!

Abigail while she was at Hershey Park, PA