The Waiting Room

How many times have I sat in waiting rooms in hospitals? I feel like an expert and like I really need to teach a class on "How to Wait".

MD Anderson has the most interesting waiting rooms of all. I've been in many of them. Lymphoma, Leukemia, Gastrointestinal (with my friend Luisa), CT Imaging, Radiology, Children's Cancer Hospital... I could go on and on. I've been all over the institution waiting.

This morning, I'm in the waiting area on the 7th floor of the Mays Clinic, the Genitourinary Center (affectionately known as the GU center so I've decided that I'm gonna start calling it the "GU"). I am pretty sure I'm the youngest person in this room.

Waiting rooms are filled with people who are waiting. Obvious, I know. But waiting is the hardest part. Waiting for procedures. Waiting for results. Waiting for appointments. Waiting for decisions. Waiting for time to pass so you're no longer in the darkness of cancer, but have come out on the other side alive and well and finished (I hope).

My heart hurts for the people in the waiting room. They are here for only one reason: cancer. Whether you're the patient, the friend, the spouse, the child, cancer is tough for everyone. May God help the people in the waiting room today.

Two Things

It was a pretty rough day, but it ended in the best way imaginable. All four of us were in bed together talking and laughing. This was something I used to think would stop when Morgan and Dylan became teenagers. It definitely doesn't happen a lot anymore, but when it does, I love it.

I love hearing about their day. Since they were little, I've had this "game". At the end of the day I will tell everyone to say two things they liked about the day. It doesn't have to be their favorite two things. It doesn't have to be anything big. Just two things about the day that they liked. 

The point in it is to remind us that even if you have a really bad day, if you can at least find two things you liked, you can be thankful. Tonight Dylan's two things were the quesadillas for dinner and the second helping of quesadillas. Morgan's were the math tutoring session and a "bonding" experience she had with a friend over a book.

My two things on this difficult day were the grande chai latte this morning and the whole family hanging out in my bed talking. It's the simple things in life that mean the most. I don't need to live in this big house to be happy. I don't need nice clothes and expensive jewelry. I don't need anything but my family and nights like tonight.

Strong

If I faint or lose heart, I'm no good for those who need me most. Today, although I'm feeling exhausted and weak, I choose strength. I choose to get up and do what must be done in this day, in this hour, in this exact moment.

Get Up & Get Going

When my alarm sounded at 3:45 a.m., I wanted to shoot it. I got home really late last night from the Inspiration Dinner and now a few hours later, I'm having coffee and about to head to downtown Houston for the Luke's Locker Half Marathon.

By the time I arrive, I will be all purple and peppy and ready to cheer on my teammates. Right now, though, I wish I could close my eyes and sleep!!!

Last week, Bill had another very difficult scan/procedure at MD Anderson. We ended up being there for many hours and I didn't get to see my kids all day. While I sat in the waiting room, a man about my parents' age looked at me and said, "you're too young to be here". I smiled and said, "if you think I'm young now, you should have seen me 11 years ago when this all started!"

Of course I'm all too familiar with the fact that cancer doesn't care about youth. Cancer has the indecency to attack newborn babies. I've been in the children's hospital at MD Anderson many times. I've been with cancer patients at Texas Children's too many times, starting when I was a 7-year-old. Cancer is evil! I had a friend one time tell me they didn't believe in "evil". Well, I guess they just never met someone with cancer then.

So, all we know after last week's procedure is that Bill's cancer is not a recurrence of the original one. It's a new cancer. It's likely caused by the chemo he did for NHL, but at this time, we still know very little. It appears that the tumor is isolated. If so, that's a good thing because if it has metastasized we're dealing with a much bigger problem.

Wednesday Bill has another biopsy and for this one, they may knock him out. This will help them determine where all the cancer is and which cancer type we're dealing with. It's looking like prostate, which is very strange. Bill is in his 40s so this is highly unusual. Of course, with the amount of chemo he did before, he can develop a malignancy anywhere. His worst symptom right now is the lower back pain. I've read that if a person has prostate cancer and they are showing symptoms, that's usually a bad sign- it means the cancer has advanced. So, I am going to force myself to stop reading til we know more.

Time for me to head to Houston to high five a bunch of heroes who are running to cure cancer. Go Team!

Caregiver

It's a beautiful morning in San Francisco. Bill has left to grab coffee before the staff/coach meeting for Team In Training and I'm looking at Facebook before I shower and head down to shop at the expo. How I love the atmosphere of a race! And this one is really fun. Nike Women's is just super girly and cool.

I wish I were happier. I wish the dark clouds of cancer weren't hanging over our heads. But I suppose we've been through this storm before and we can do it again. It's just that this time we feel so old and worn out!

When I was 33 years old and strong and healthy, I went into the fight against lymphoma as a different person. I actually felt like a tough soldier then. But this time I'm so tired. And my kids...

This part is so difficult. They aren't five and three years old anymore. They are 16 and 14 and they understand perfectly what's happening. It's exceptionally hard on Morgan. Her dad is her daddy and her best friend all in one.

And then there's Bill. He's scared. He's determined and filled with faith, but that doesn't mean he isn't afraid. He's been through cancer hell before so he knows how ugly it is. He's trying to brace himself for the pain and torture of treatments (even though we have no idea what he's going to endure there).

Interestingly, when you are the caregiver (that's my role for so many years I feel I should write a handbook: Caregiving for Dummies?), you do not have time to feel. You have to reserve all your feelings for another day because this is some serious work and there's no time to wait. Once I return from San Francisco, it's all business. I have to make sure the entire house is in order and that everyone knows their roles. I gotta remember to buy bleach.

After the first three years of cancer, it hit me one day that I had not allowed myself to feel any real emotions for a long time. And it needed to come out. Sadly, there weren't a lot of others around who understood those feelings. This time, I won't make the mistake of going at it alone. I will have to be quiet about my feelings for a while, but then I'll be sure to talk to other caregivers who've been down this road and know exactly how it feels.

Cancer. Stupid, ugly cancer.

11 Years Later

It hit pretty hard yesterday morning while I was at the gym lifting weights. Yesterday was a beautiful Tuesday morning and what I thought I would be doing yesterday, what I thought I would be feeling, well, it just didn't go that way.

You see, Tuesday, October 14, 2003 (11 years ago), my husband called to tell me he had cancer. It was a shock. Yesterday I had hoped that we would be popping open a bottle of champagne to celebrate 11 years. Celebrate them because that day all those years ago was the beginning of a new life, a new journey.

Instead of celebrating, I found myself feeling the awful sting to my system just like that October 14 of 11 years ago. I felt angry and afraid and tormented. Today I just feel tired. It seems that the anger is being replaced by sadness. This feels very real.

And without writing about the alternate story, for the past few weeks, I was thinking we might be on the start line of a new journey. A happy one. In a new place. So, in addition to sadness, I'm also feeling defeated.

Eleven years after our cancer journey began, it begins again continues. Please, Heart, stop hurting. I'm tired.

Here We Go Again?

For the first time since my husband's cancer diagnosis 11 years ago, I had zero concern. It's strange. Every time he goes into MD Anderson for a check up or a scan or for anything at all, I have at least a little anxiety. But not this time.

My 16-year old daughter said the same thing. "Mom, this was the first time in all these years that I wasn't worried."

Another interesting fact is that although I have attended various appointments with him over the years such as small surgical procedures, I have not gone with him to a follow up with his oncologist since July 2006 when he had his final infusion of Rituxan. Not sure why exactly. I always knew the doctor might deliver bad news and tell him that his cancer was back. I never wanted him to face that news alone, but we have become really good friends with his oncologist so I always felt like he wouldn't be alone. He was with a good friend. Actually, Rick Hagemeister is more like family to us.

But Thursday, October 9, at the last minute, I decided to go to his doctor appointment. And I had absolutely no worry. That's why it felt like a punch to my gut when Rick did not walk in and start chit chat about life, but instead delivered bad news. His PSA is 16. What? I've never even paid attention to his PSA before!

Bill has blood cancer. It's incurable, but we've seen incredible advances in the past 11 years and Bill is living and those cancer cells have remained inactive for many years. We have always known they could stir up again and the lymphoma could come back. We have always known that there was the possibility of a secondary cancer (most likely AML). So when we heard his PSA was so high, it was quite the shock.

Typically, if the PSA is under 4, there's no reason for concern. Bill's has always been 3. So, why on earth is it now 16? Is there any way that this number as well as the symptoms he's had (back pain, trouble urinating, etc.) are just a bad infection? If infections sometimes turn out to be cancer, then is it possible that cancer might turn out to be an infection?

I'm mad. It's that simple. I've never been mad about this before, but I am now. Always before, I've just been sad or scared or determined or prayerful. But right now I'm angry. Angry at cancer. What a stupid, ugly, bullshit disease!

And here we go again with the waiting! Bill can't have the consult with the urologist til Thursday! Thursday afternoon! And we leave Friday morning for a marathon event in San Francisco. So we have to wait, wait, wait. Always waiting!!!

These past 11 years have been intense. We've had incredibly bad times and we've had incredibly good times. We've had incredibly sick times and we've had incredibly healthy times. We have loved each other through it all, but right now I'm wiped out. And I'm mad.