Tuesday, May 26, 2009

Oh happy day!

He's done. Finished. See that little calendar widget over in the right hand column? It's blank! I feel like I should post something eloquent or introspective on a day like this, but frankly I'm too exhausted and shocked to think straight. You'll have to wait for something more poignant later! I just wanted to get this information up as soon as possible because so many of you are waiting for the update.

Reese's pulmonary function test did show a mild to moderate decline on several factors, so Dr. Minow insisted on discontinuing the Bleomycin. Cancer is nothing to mess around with, but so is pulmonary toxicity, and he felt the risks to Reese's long term lung function were too great. As you know, this is not really the news I was hoping to year. I wanted to be able to continue the Bleomycin and for Reese to get every bit of treatment that we'd originally planned. Reese, however, was understandably thrilled! He's been in horrible pain all weekend, so the news of no more yuck being pumped into his body from this point on was just what he was looking for. Nobody wants him to be subjected to any more chemotherapy than he needs, but I want to make sure we've done the prudent thing in combating the cancer cells. Dr. Minow assured us that when he's managed "good risk" patients like Reese who show signs of possible lung toxicity, the experts at Indiana University have advised that skipping the Bleomycin for the last round is acceptable. He also felt that adding another whole round of Cisplatin and Etoposide to substitute for the Bleomycin was far too aggressive. I made him say it several times and in several different ways to me -- he was very patient, checking and rechecking to make sure I was confident in the plan. I didn't let him off the hook easily, and I think he was a little glad to see me walk out of the office today!

The plan, moving forward, is to get in for another PET scan later this week, and then meet with the doctor the following Tuesday to go over the results. We're expecting to see that the cancer is completely gone from the lymph nodes, which would mean that Reese would be back on a less extensive surveillance protocol. If the PET scan shows anything is still going on, we have more options and will come up with the next step.

So, he's done. Well, sort of done. The chemotherapy medications definitely saved their best for last. This past weekend was the worst Reese has had, by far. He is really wiped out, and struggled even to make it across the parking lot from the office to our car today. We're going to hold off on the cake and party horns at this point, and I don't think he's quite up to beginning his training for the Tour de France just yet. I expect he will be firmly planted on the couch for the better part of the next 2 weeks, but we should begin to see steady improvement in his energy level after that.

Anybody want 4.97 pounds of protein powder? He hated that stuff anyway.

Saturday, May 23, 2009


These conversations always happen in the car. When they're not restrained by seatbelts, my children are too busy running, jumping, crashing, pushing, twirling, and generally getting into things. When they're in the car, they talk to Mom.

The other day we had to drop Reese off early for his infusion. The nurses graciously offered to get his IV started before their 8:00 AM staff meeting, so he would be done in time for his 1:00 PM pulmonary function test. Cade and Collin, who are usually at school during this routine, were in the car. Cade was the first to pipe up after Dad walked off into the building.

Cade: Why does Dad have to go there every day? (Said in a bit of a huff because he'd rather be home eating Captain Crunch than riding around in the car at 7:45 AM.)

Mom: Well the chemotherapy medicine works better if they give him a little bit every day, instead of all at once.

Cade: Why can't he take his pills at home?

Mom: They're not pills, they're liquid medicine, remember? Every day they have to poke Daddy with a needle, and that needle is connected to a long tube, and that tube is connected to a bag of liquid that they hang up on a metal pole. All day long, it goes drip, drip, drip, down the tube and into Daddy's vein. That's how he gets his medicine.

Cade: Wow, he has to get poked every day? I wonder why they can't just put him to sleep for the whole time.

After a long-winded and logical explanation of why they can't do that, I realize, "Oh duh, Mom, that's not the point." The point is, I think, that everyone here wishes there was something they could do to make Dad not hurt so badly. Around this time in the treatment cycle, I think Reese wishes he could just sleep for a long, long time too. This weekend, everything hurts and sleep doesn't come easily.

Cade is always telling us about the things he'll invent when he grows up: computers that write out your homework for you, an elevated walkway from our house to the Timblins so you wouldn't have to look before crossing the street, and special suits so you could go down inside a volcano to see the lava firsthand. Maybe some day he will invent a way for people to sleep through their whole chemotherapy treatment. They would wake up in two months or two years and hardly remember what their bodies had been through. That would be a good thing.

(Yes, he's laying ON the dog bed here. He's finally found someone, in Sadie, that he can't outcuddle.)

Friday, May 22, 2009


We are still waiting...waiting...waiting to find out Reese's pulmonary test results. I don't really have any answers on this front, but I wanted to post because I know so many of you are checking the blog and calling for updates.

On Wednesday, Reese had his pulmonary function test to assess whether the Bleomycin is damaging his lungs. We don't know the results of that yet. When we find out the results, we aren't sure if this will keep him from receiving the Bleomycin for the rest of his treatment. If that were to happen, we don't know exactly what impact the omission would have on his prognosis. We are just waiting.

Thank goodness I have 10 minutes in the car with a quiet 3 year-old and loud praise music to get my mind straight every morning after dropping Reese off. Letting him out of the car and watching him walk into the medical building alone is one of the most frustrating things I have to do during infusion week. Not knowing how the treatment will go, what unexpected complications may pop up, and what new test results will come in is scary for me. This morning, as I drove and listened to Ben Walther's version of Mighty to Save, I was reminded of something I'd read on a great blog a few weeks ago. When the blogger's tiny son was in the hospital with severe cardiac complications, a friend encouraged her that no matter what happens, this is not God's Plan B. There is no Plan B with Him. It's all still Plan A.

Even though I fret and get thrown by the twists and turns, He is neither surprised nor shaken by complications. Not only has He seen the road map, He wrote it.

Tuesday, May 19, 2009

When I get there

We are working with Ellery on giving up her pacifier. I know, I know, it's long overdue. Maybe because she's the baby of the family, or maybe because she's so darn stubborn, I have put this off for far too long. I gave her the big speech the other day on the way to Costco. I don't know what I was thinking. I do not generally recommend this. It went like this:

E: Mama, I want my pat and fluffy. (her paci and lovey blanket)

C: Oh Ellery, you don't need that paci any more. We'll have a nice churro at Costco and you can leave your paci in the car.

E: Mama, I want my pat and fluffy! (more frantic)

C: Ellery, when you fell on your tooth it made it all wiggly and so the paci is not good for your tooth. You can just have your fluffy and leave your paci in the car.

E: No, Mama. I want my pat and fluffy! (wigging out now)

C: (with visions of a Costco meltdown in my mind) Ellery, you are a big girl now, you will be just fine.

E: No, Mama. I am not a big girl, I am just a baby!

Well, to my surprise, the conversation about the paci has been the worst part of it. Can you believe it? She has not used her paci during the day since we had our talk. We still let her use it in bed, but the minute she gets up, she tosses it in the crib and that is that.

It made me think about myself and how I approach things that I don't want to do. Things like cancer. The thinking about it and anticipating it is so much worse than the doing it.

Before Reese got his diagnosis -- when cancer was something that only happened to other people, rather than something that was happening to us -- I couldn't even fathom what was ahead. I remember hearing the garage door open about an hour after his appointment with the urologist. My heart sank. If everything had gone well, he would have called me on his cell phone en route to the office, right? He would say, "Oh, I just need some antibiotics" or "It's just a cyst that will go away." But if there was bad news, he would come back home to break it to me in person, and that's what was happening. He sat on the bed and said that it was a tumor (there must be a mistake!) and that it was almost certainly cancer (there must be some other explanation!).

I remember thinking, "Oh, I hope he doesn't need to have surgery", which turned into, "Oh, I hope it's not really cancerous", which turned into "Oh, I hope he doesn't have to have chemotherapy! I don't think I could handle that." The list goes on and on, and there are still fears about the future.

The one thing that is true and constant is that I have not faced any one of those fears and found Christ lacking. I may be thinking "Oh, I could never do that," and in my own strength that's pretty accurate. I can't do that, but He can. When I obey and trust, he gives me the grace to handle whatever fear I'm facing when I get there. The thinking about it and anticipating it is so much worse than the doing it, because His power is unleashed not in the worrying, but in the doing.

Ellery, Mama has not figured it all out. I want to avoid painful things and go back to what's comfortable. There are times when I want to be a baby and not a big girl. Fortunately, God loves me and He is big enough for me even when I feel small...especially when I feel small.

Isn't it amazing that a three year-old paci toting, tantrum throwing, tutu wearing baby girl can teach her Mama about obedience and grace in such a powerful way? This post has been rattling around in my head for about a week, but I finally put my thoughts together in order to chime in on Tuesdays Unwrapped over at Chatting at the Sky. For more thoughts about finding everyday inspiration, go have a look at Emily's wonderful blog. It's one of my favorites.

Monday, May 18, 2009

Another round

Today marks the start of Reese's third chemotherapy round. The last one. Yay. To be honest, I'm having a hard time mustering up as much excitement as I anticipated I'd have. Although we have had a good week, Reese definitely hasn't bounced back as well as he did the previous time. As we'd been warned (but were somehow hoping we could escape), the drugs are gradually working away at his body's reserves, as well as the cancer. The monotony of feeling "better, yet not that great" is wearing thin. It's only Monday and already he said, "I really do not want to go in today". Giving him a hug and telling him that cancer stinks, it's not fair, and he's very brave are the most I can do about that. Off he went with his iPod and lunchbag for another day in the infusion room.

Would you pray along with us about some specific things? His red blood cell count was quite low last week. If that's still problematic today, they may address it by giving him a medication called Procrit. In layman's terms, Procrit is to red blood cells as Neulasta is to white cells. It stimulates the bone marrow and, as you can guess, can cause more bone pain. If you're reading this morning, please pray that his RBC counts have rebounded and there won't be a need for the Procrit. If he does need it, we're hoping that the pain will be manageable.

Another issue that we've been praying about is our anxiety as the end of treatment nears. Soon, Reese will be having tests to confirm that the chemotherapy has worked. In all likelihood, the drugs have already done their job and the cancer is gone. The therapy he is receiving is the gold standard for good risk testicular cancer metastases. However, there is always a very slim chance that more treatment would be needed. Please pray for peace of mind and endurance as Reese finishes out this last cycle.

We're so thankful that we have a God who can give us peace beyond our circumstances. He sees the path ahead of us, even when we can't.

*Edited to add* RBC's are holding steady and they will keep a watch on them. There was no need for Procrit today. In other unexpected developments (you know how Reese likes to be exceptional), he has some signs that could be suggestive of toxicity from the Bleomycin (a slight cough and skin rash on his hands). Just to be cautious, Dr. Minow has ordered another lung function test to make sure that all is well before administering the Bleomycin part of the chemotherapy. Please pray that the test results show that everything is fine with Reese's lungs and that he can continue on with the planned schedule of chemotherapy. We'll have updates on the results some time after Wednesday. Thanks for the prayers!

Tuesday, May 12, 2009

A generous gift

Over the past few months, our family has received a number of "get well" gifts. We have been amazed by the generosity and thoughtfulness of so many as we've answered the doorbell to find fruit baskets, flowers, catered dinners, books and DVD's, t-shirts, and other gourmet treats. I wanted to take some space, however, to highlight one specific gift that we recently received. The other day, FedEx delivered a box from The Dignity Foundation.

The Dignity Foundation is a local organization that serves cancer patients nationwide who are struggling with hair loss and the body image issues that it can bring about. A letter we received along with the package outlines the foundation's mission, "The Dignity Foundation specializes in providing affordable, stylish, and comfortable quality headwear, wigs and hair pieces to patients experiencing hair loss," and "we will continue to service the needs of cancer patients in Orange County, and ensure their inner beauty continues to shine."

Our thoughtful loved ones sent us a Men's Sample Kit. It was beautifully packaged.

We were so excited, after reading about the products' high-quality "mono-top and fully hand-tied styles" which feature both "state of the art technology and handcrafted quality."

Wait a minute! What the...?

Are these from Spencer's? Hey, hold on! The letter is signed by "April Furst", like...April Fool's?

Our "sample kit" included the Tacky Toupee, The Dred Wig, and The Super Mullet Wig.

Collin did not want to participate in the modeling. He said, "Are these pictures going on facebook?" He was not having any of it, but did enjoy Cade and Daddy's fashion show.

In truth, there is no Dignity Foundation. This is the handiwork of our good friend, Garet Binckes -- practical joker extraordinaire. Garet, you've certainly outdone yourself this time. If Nortel doesn't work out, I'm sure you can always find a job on Punk'd, Candid Camera, or maybe some branch of the CIA where they spy on people while fronting a fictitious business.

It's true. Laughter is the best medicine.

Saturday, May 9, 2009


We're feeling pretty victorious in the Stewart household this weekend. Cade's Cal Bears surged to a 2nd place win in last night's 1st/2nd grade Friday Night Lights flag football championship. It was a fun night for our whole family, and we're so glad that Daddy was feeling up to joining in. Though we are worn out by the past few weeks, we know that cancer can never defeat us in what really matters. A family friend sent us a poem the other day that describes my thoughts entirely:

Cancer is so limited.
It cannot cripple love, it cannot shatter hope.
It cannot corrode faith, it cannot eat away peace.

It cannot destroy confidence, it cannot kill friendship.
It cannot shut out memories, it cannot silence courage.

It cannot invade the soul, it cannot reduce eternal life.
It cannot quench the spirit.
It cannot lessen the power of the Resurrection.

Can cancer conquer you?
I doubt it, for the strengths I see in you
Have nothing to do with cells, blood and muscle.

Thursday, May 7, 2009

Happy Half Way Day!

Today marks the half-way point in Reese's nine weeks of chemotherapy, and it's a good day. For one thing, he's feeling much better. His appetite continues to improve, he's getting some longer stretches of sleep, the headaches and nausea have lessened, and the Lakers pulled out a win! He's still pretty much glued to the couch with the tiredness, but that's okay.

Another reason for this good day is that we can mentally cross off the first half of his treatment. Done! That's not to say that he'll feel magically better after the ninth week, but we should certainly start to see upward progress from that point on. In my mind, it's really better than half-way because he's already made it through the first week of two cycles, which are the worst parts. Only one more to go!

In celebration of the day, I wanted to take a minute to mention some thank-you's. Truly, one of the main reasons we've adapted so well up to this point is because of all of you. In the past few months, you have brought us meals, driven us to doctor's appointments, sent us groceries, folded our laundry, cared for our kids, loaned us books and DVDs, read our blog, handled things at the office, sent us cards and e-mails, washed our car, walked our dog, and many more things I don't have room to list. You have given us things to laugh about. You have prayed for us, encouraged us, and loved us. I feel like the guy on the Verizon phone commercials where he has trouble with his phone and all of a sudden, three hundred people show up in hardhats and business suits, with tool boxes, ladders, and laptops. You have been a huge source of help and support. We are overwhelmed.

Happy Half Way Day!

Tuesday, May 5, 2009

Out of the fog

I think it's safe to say that Reese is starting to pull out of the "week one" fog that descends over our house every cycle. I actually heard him whistling along to Max & Ruby this morning. That's a good sign. He's been happily watching basketball non-stop today (what is up with all the basketball?) aside from a few cat naps. That's a good sign too, even though it means that all three kids plus Reese have been fighting for control of the remote tonight. I'm never going to get caught up with Dancing With the Stars.

I went along with him for his Bleomycin infusion today. He was also getting checked out by Dr. Minow, and I like to get updates straight from the expert every now and then. He said, basically, that Reese looks great for where he is in the process. He was a little concerned about his weight loss, concluding that it must be water weight, since his appetite has been so much better. So, an extra IV bag of fluids and a B-12 injection were added to today's regimen, as well as some more IV Zofran just for kicks. Dr. Minow also suggested bumping the Neulasta shot to Monday next time around, hoping that will reduce the bone pain.

All that extra stuff must have improved his appetite and mood because he requested some Carl's Jr. Six Dollar Slammers on the way home. Have you tried them? They are really good, and you know I'm not that crazy about Carl's food. Reese says they're only in limited markets so far, but they're little tiny burgers on King's Hawaiian Rolls. Okay, enough of the commercial...just try them.

Monday, May 4, 2009

Q & A

This past weekend, our blog cracked the 1,000 hit marker. Seriously? One thousand hits? You guys are amazing! I can't tell you how much it means to Reese and me that you read the blog, think about us, share in this with us, and pray for our family. Some of you we know. Some of you we've never even met, but we feel a closeness with all of you whether you are personal friends or just people looking for information on testicular cancer and its treatment.

Not only are you reading the blog, but you are dialoging with us via the comments function, in person, and through e-mails. I love that! It helps me know you're out there...*knock knock...hello?* If I could pass on just one small percentage of everything we've learned so far (be it medical, practical, or spiritual) that would make me so happy. In communicating with many of you, a few common questions keep popping up, so I thought I'd take some space to answer them here.

1. What kind of cancer does Reese have now? Is it lymph cancer or testicular cancer?

It's still testicular cancer, it has just metastasized to two of his lymph nodes. Testicular cancer is a germ cell cancer and so it is treated in a very specific way. While "metastasized" sounds pretty scary, remember that on Reese's surveillance plan, the doctors were watching and waiting very carefully for any small sign of cancer to show up. When it did, even though it was almost microscopic, they took quick and decisive action, so his prognosis is still very good.

2. Isn't Reese too old for testicular cancer?

Yeah, he just loves that one! Well, apparently he's not too old, but you're right in that he's on the older edge of the curve. Testicular cancer is the most common cancer in men, age 20 to 34, so they're definitely the highest risk group. However, 90% of testicular cancer cases occur in men 20 to 54. Also, testicular cancer is unfortunately on the rise, and the age range is expanding. Do you know what that means? If you are a man and you are reading this blog, you need to think about doing routine self exams for testicular cancer. Yup. It can occur in a 17 year old as well as a 70 year old.

Testicular cancer was the furthest thing from Reese's mind. He just got lucky in that his tumor happened to be quite painful and drove him quickly to the urologist. The signs are often more subtle. If you want to know more about how to do a self exam, check out this link or this one. Okay, nuff said.

3. Testicular cancer, isn't that what Lance Armstrong had?

Yes, that is what Lance Armstrong had, although his case was much more advanced than Reese's by the time it was diagnosed in 1996. And hey, look at him now! Other famous testicular cancer survivors include: Tom Green, Scott Hamilton, Dan Abrams, Richard Belzer, and many other well-known professional athletes, including U.S. swimmer Eric Shanteau, who competed in the Beijing Olympics last summer.

4. My aunt/grandpa/gardener/landlady had cancer and he/she just took a pill for chemotherapy or had a pump that she wore around and wasn't sick or didn't lose his hair at all. What's up with Reese?

Reese's cancer has been quite an education for us. Dr. Google and I have become great friends, plus we do truly have a wonderful real-life oncologist, Dr. Minow, who is very patient and always open to questions. What I never realized about cancer, until our experience, is that there are so many different kinds and each particular one has its own specific treatment. If you have lung cancer, there are certain procedures and drugs that will treat it. If you have skin cancer, there are different procedures and drugs that will treat that. It's the same with testicular cancer. What Reese is receiving (BEP chemotherapy) is the absolute gold standard of care for the kind of cancer and staging that he has. There's really not any other way it's dealt with, so we can be confident that he's getting exactly what he needs.

While modern science has made tremendous advances and people can sometimes take a pill instead of being hooked up to an IV, or not have to be sick and lose their hair, those sorts of drugs don't work for testicular cancer. The great news is that treatment for testicular cancer has improved tremendously in the last 30-some years. Due to the pioneering work of Dr. Lawrence Einhorn and his exploration of platinum-based chemotherapy, the survival rate for testicular cancer patients has risen from 10% to 95%. Wow! Makes you want to donate to cancer research, doesn't it?

Do you know what else is cool? Our doctor, Dr. Minow, did training with Dr. Einhorn way back when and also consults with him on an as needed basis. Reese is in very good hands.

5. How can we help you?

Trust us...you are all doing exactly what you need to. For those of you that have offered specific help, you are definitely on our mental "call list" and we will continue to call you when we need you, without hesitation. For those of you who are far away, we know you love us and are with us in spirit. Just please continue to keep up with our news, pray for us, and please don't worry. We love you all and appreciate your concern, kind words, and prayers!

Sunday, May 3, 2009

My manna pile

Today is Sunday, and while Reese rested at home, the kids and I were able to soak up a lot of love and hugs from everyone at church. I can't count how many times I answered the question, "How's Reese doing today?" with, "Well, if it's not one thing, it's another." The Emend really does seem to have helped significantly with his nausea, vomiting, and appetite. Unexpectedly though, he now has quite a bit of bone pain from yesterday's Neulasta shot. No amount of pain relievers, heating pads, and hot baths seem to be giving him complete relief. His ribs, arms, back, and joints ache like he's about 100 years old, and it's been nearly impossible to get comfortable for very long. He didn't have any problems with the Neulasta shot the last round, so I wasn't anticipating that being a big problem this time. If it's not one thing, it's another.

Reese's cancer experience has been one big exercise in giving up control. I do not like giving up control. Here I thought that if I had enough meals scheduled, enough childcare back-up planned, enough bottles of medication on the bathroom counter, and enough healthy and palatable food in the fridge, that we could handle this weekend and it wouldn't be so scary and frustrating. I do not like giving up control, but the truth is that I am not in control. God is.

When the Israelites were journeying through the desert to the Promised Land, there was a lot of grumbling. There was a lot of, "God, it's too dirty, hot, cold, dangerous, uncomfortable, unfamiliar, scary...whatever." I get the Israelites. I tend to grumble a lot too. When they were hungry, God gave them manna -- little flakes of sweet bread that rained down from the sky to feed them. If they tried to pick up more than enough for the day, it would turn rotten in time. Whatever was left on the ground, melted away in the hot afternoon sun. There was just enough for everyone, every day.

It would feel good to hoard up a big manna pile in my spiritual pantry, rather than going out to gather it every day. If I had a big manna pile saved in the corner, then I would know exactly how God was going to work things out ahead of time and have tangible proof that everything was going to be okay. But God doesn't operate that way, or at least He tends not to with stubborn me. He is less about me being self-sufficient and more about Him being all sufficient.

Why does God keep me guessing? Is it to punish me or make me feel insignificant? Hosea 13:5-6 sums it up best: "I cared for you in the desert, in the land of burning heat. When I fed them, they were satisfied; when they were satisfied, they became proud; then they forgot me." When I start to think I've got it all figured out, I get proud and I forget him. He wants relationship with me most of all. He wants me to depend on him every single day for what I need. He has never failed me in that, even though I still fight and often forget his goodness.

So, I will try, even though I hate it, to see cancer as God's way of keeping me right by his side. I will choose to see Him teaching me to be humble. I will choose to see him showing me his faithfulness, every day, in the middle of the desert.

Friday, May 1, 2009

Bring in the reinforcements

Yesterday, Reese got a boost in the form of a new nausea medication. It's called Emend and is a 3 pill pack that he can start in anticipation of the really bad nausea, take for three days, and still benefit from for another 2 days after. If all goes as planned, that should give him additional relief through Monday, which is when the worst of the side effects started to lift in round 1.

I have to say I was a bit shocked when the Target pharmacy tech rang up my bill for $133 (and that's our copay after insurance!). I also have to say that if it works like it's supposed to, I'd be willing to pay at least four or five times that amount. If the nausea lets up, he might actually have time to be bothered by the other side effects: ringing in his ears, headaches, insomnia, mental fog, and swelling. He's got all of those too, but they pale in comparison to the frustration of the constant nausea. He's been a great patient this week -- no complaints or grumbling going in today. Yay for the final EP treatment of round 2!

The Emend does seem to be having some effect already, that I can see. Reese is really wiped out after today's infusion, but he's able to eat every few hours and keep it down so far. He even had a tiny bowl of Ben & Jerry's last night while we watched The Office. Any small improvement is improvement, and I'm thankful for it.

Speaking of the Target pharmacy, I was completely alone (no kids) at Target for what seems like the first time in months. Dave and Steph had taken all of the kids out for an afternoon of fun and I had 45 minutes to wait for Reese's prescription to be filled. Forty-five minutes all to myself to use the regular changing room, not the handicapped one where you have to shove your kids and shopping cart in while they whine and drop popcorn all over the floor, yet I could not find a single thing to try on. What is wrong with me? *Gasp* What is wrong with Target?