Prior to Andrew's radiation and chemo treatments, he had a full body PET scan. Despite Dr. Yueh expecting the cancer to have spread, we are so grateful that cancer did not show up in any other parts of Andrew's body. As I read each page of the PET scan report, my heart felt full, overflowing with worship and praise towards God, who so clearly is the One who holds all things in His hands.
As you have probably gathered, Andrew decided he wanted to go through with radiation and chemo, despite the misery and toxicity it would cause him. He would have to do radiation for six weeks and chemo - Cetuximab (also called Erbitux) and Taxotere. The radiation is from Monday through Friday and takes about a half hour. It is increasingly like having a horrendous sunburn that blisters and bleeds constantly. Chemo takes a few hours through IV, every Monday.
Week 1 of Treatment
The first week we went back and forth whether it was worth it to continue. We wanted to speak with our radiation doctor, but she had been on vacation for the past few weeks. Another radiation doctor met with us and showed us a study that, according to her, showed that some people who did a second course of radiation with oral cancer managed to survive after 5 years (5 years of survival is considered cure). However, it was only 9% who were still living. Andrew wanted to know if 9% would have still been living if they had done nothing anyway. Obviously they had no studies to give us on that. We felt really reluctant that the benefits of this treatment were really worth the misery Andrew was going to have to undergo. Nonetheless, our resident, Dr. McAfee, convinced us to wait until our doctor, Dr. Lee, returned from her vacation in Italy.
Week 2 of Treatment
On Thursday, Dr. Lee met with us. She said that according to her experience, based on the way in which the cancer had travelled down Andrew's throat coupled with the new information that there was no evidence that the cancer had spread anywhere else in Andrew's body, she believed that the cancer returned so quickly (quick means within a year of last year's treatment) not because the cancer was so aggressive or because Andrew is radiation-resistant, but because there was probably still tumor left behind after Andrew's first surgery last year in Seattle. Andrew had not had a PET scan after surgery last year, because they try to minimize PET scans to every 6 months and Andrew had just had one prior to surgery. Plus, a PET scan usually only picks up tumors larger than a centimeter, so our Seattle doctor last year had assumed it wouldn't pick up anything anyway.
If there was still tumor left behind in 2007, radiation and chemo couldn't have gotten get rid of an actual tumor in this region of the body. It can only get rid of microscopic cancer, which they know to be the case this year.
In English, this means that if it is true that our Seattle doctor had unsuccessfully removed the tumor last year, Andrew's prognosis is not as hopeless. This means that the cancer is not as aggressive as initially thought and not radiation-resistant. Andrew has a 60% chance of getting local control over the cancer. Of course, there is no way to verify if this is the case.
The reason Dr. Lee's hypothesis doesn't sound crazy or unlikely to us is because Andrew had said the very same thing to me a few months ago. He had said, "Grace, I just have this feeling that the doctor super screwed up last year. I've always had this feeling that there was still a tumor at the base of my tongue." Nobody had considered this before because our doctor was supposed to be one of the top 3 surgeons for this in the world. But when I had recently described to Dr. Yueh how the 2007 Seattle surgery involved cutting the tumor out, then another cut, and then a third cut to get a clean margin of no cancerous cells, he blurted, "Then I would say that was a really bad surgery." Then he caught himself and said, "But every surgeon has a bad surgery like that, even the best."
Dr. Lee explained to us that the reason you have to get a clean margin around a tumor the first cut, especially in the tongue, is because the natural reflex of a muscle when it is cut is to immediately retract. Thus, if there was still cancerous tumor left in the tongue, the muscle fibers can retract so deeply into the tongue that the doctor would have had to cut much much more than he should have had he gotten it out the first cut, and then there was no telling how much to cut. It's such a difficult judgment call in the mouth, because even millimeters are high real estate, so the doctor is trying to balance doing as little damage as possible with making sure to get a clean cut around the tumor.
If it is true that the 2007 surgery in Seattle was a complete blunder, we do not feel angry towards our doctor. We know that the Lord had the surgeon's hands in His own Hands that day. It only proves that we can't place our hope in doctors, no matter how great he may be, but God alone. The life of a man is in God's hands, and nothing can thwart His sovereign will. Nothing can mess up where one molecule should be for one millisecond in all of God's creation.
Dr. Lee said that we need to get local control of the cancer, because you don't want to die of oral cancer. It's very awful. Aside from not being able to swallow or talk, it can make breathing very difficult. She said even if it spreads somewhere else, you don't want it to be oral cancer that kills you. Andrew said, "So it would be better to die of liver cancer than oral cancer?"
"Yes," she said. But then she explained that we should not worry that only 9% were living after five years, because they might have died due to cancer in other parts of their body. And those people are usually much older and in general bad health. If we get local control, she said, and there's no evidence that the cancer has spread, then maybe it won't spread somewhere else and we can cure you."
So Dr. Lee had convinced us to stick with radiation. She told us we were thinking too much. She said Andrew should just watch funny cartoons with our kids, as studies show a positive attitude tends to increase the rate of success for the treatments and that we should continue giving him good nutrition, as studies also support its effectiveness. I said what we needed was a trip to Italy.
They also pointed out the acne breaking out on Andrew's face was a sign that the Erbitux was working.
The Thursday we decided to fully commit to these treatments was two days after my end of the rope day that I wrote about. I told Andrew I felt like I really needed a vacation. So I asked him if we could go away over the weekend. He said he didn't want to go far and for only one night, otherwise it's more work than restful. So we went to the newly renovated Hyatt Place in Eden Prairie, the town we live in. We left our house on Friday afternoon with Andrew saying he was feeling well. But when we arrived at Costco to look for a funny DVD series to buy with a gift card some people sent us, Andrew said, "I suddenly feel so tired," just before we left the car. I told him I could go in by myself. He said he really wanted to choose, too, though. So he walked with me into Costco and we sat him down in one of their wheel chairs.
Now, before Andrew had his stomach tube inserted, he used to have a feeding tube that went in through his nose. There was this one day between doctor consultations that we walked down the street outside of the hospital at the University of Minnesota. When Andrew wasn't injecting food into his nose tube, he would wrap it over the top of his ear, and tape it there, like the nurse had taught him, so it hung from his nose to his ear, and wasn't falling down out of his nose to eventually pull out. All the college students kept turning their head to stare at him. Andrew also had a grey hood on on a sunny day, trying to keep shaded, because otherwise the sun prevents a healing scar from disappearing. He was bowing his head forward, because his neck muscles were tight from always having to sleep sitting up in the hospital so that his incisions could heal.
Not one person who passed us pretended not to stare. Neither of us really cared. I actually found it really interesting and began watching them. When I tired of flipping my head as I watched each of them pass, I turned my head towards the windows of the shops. There, I saw the reflection of their turning heads, and past that, the turning, staring heads of the people sitting at the tables next to the window inside the restaurants. I thought Andrew looked practically normal, especially compared to how he looked in the hospital. I laughed. "We should put a chain next to your nose tube and hang earings off of it. Then they'll think it's on purpose."
But as I pushed Andrew in his wheelchair in Costco, even though no one was turning their heads - I guess they knew better than to stare at a person in a wheel chair - I felt bothered. I thought, This isn't cool. "I am going to do everything I possibly can to keep you from ever getting to the point where you will truly need this," I thought out loud.
"I don't want to talk about that right now," Andrew said.
When we arrived at the lobby of the Hyatt, the style was very contemporary, which we love, and it was different than your typical hotel. The check-in counter is in the middle of the room and is shaped like a crescent. On the other side of the desk is a Starbucks coffee bar. So the person who checks you in can also serve you drinks and food. The rest of the lobby has tables, chairs, and couches set up like a giant coffee shop that people like to hang out at.
Upstairs, our room had it's own living room. We vegged on the couch and put in the first season of Saturday Night Live from the 1970s that we had purchased. Within a half-hour of watching that, Andrew fell asleep. He was passed out through all Saturday Night Live plus all of the movie we rented. He slept through all my trips out of the room, including when I went back home to spend a few minutes with my mom before she returned to New Jersey the next morning. He slept through me going down to breakfast the next day. I packed our things up and Andrew finally began to revive. "Wow, I really like this place," Andrew said. "We should come here every week."
Even though Andrew probably only saw the Hyatt when he blinked a couple of times, I think the change of scenery did us both a ton of good. Andrew doesn't get out much. Getting out of the house is going to the hospital for treatment. If he starts to feel better, we go to the park near our house. We're the type that like to go out a lot and in the past that was often to restaurants. Now, restaurants with all its yummy smells of food and crowds of people enjoying chewing what's in their perfect mouths is a place of torture for Andrew. Most of the time in our house, he spends sleeping or dozing in our bedroom. He doesn't like to rest in the living room, because he doesn't like to be in the center of things or the noise of the children. Imagine spending hundreds, more than a thousand, of hours only in your bedroom. It would become the stale cancer bedroom.
"Going to a hotel will give us something to look forward to each week," Andrew said.
I felt so relaxed after vegging at the Hyatt, sleeping in, and not having to wake up with anything to do.
Since the Hyatt is in Eden Prairie, it was so cheap, half of what it would cost 20 minutes away in Minneapolis. Plus, if you sign up for their Rewards, you get your third visit free. That means between the two of us, we get two free visits.
Since Andrew was passed out all of Friday and Saturday, I assumed it was because of the chemo. I thought, How can it be this bad after only two weeks? Andrew didn't sleep this much until the last dose of chemo last year. How will we manage if it's only going to get worse than this? How can it possibly get worse? But the next morning, Sunday, when Andrew woke up, he said, "I'm feeling better now. Let's go to church."
He later explained to me that it wasn't because of the chemo that he was so tired. It was because he was fighting off a cold. So by Monday, he was healed and okay to do chemo again. This is a huge praise that he healed so quickly, because usually doctors are afraid with a compromised immune system that it will turn into pneumonia. Last year, when Andrew got a cold, chemo was postponed a week. Instead, this year, Andrew recovered more quickly than a normal person without cancer.
Each week we go to the Hyatt Place, I feel a little more rehabilitated after the stress of Andrew's surgery and the subsequent weeks. But with each week that I feel more and more human, Andrew feels less and less human. While he gets more miserable, I must feel better, lest I end up collapsing on the bed beside him and he starts asking me how he can help me.
Week 3 of Treatment
This week was a week from heaven for me. We no longer had to consult with doctors about decisions, so now my mother-in-law was taking Andrew to radiation, so I could be with the kids. It had been two months that I had been away from them most of every day between being at the hospital and all our doctor consultations.
I was home with the kids now and the sun was calling us outside. And I can never resist its call. The leaves had finally blossomed on the trees and the path to the park had become woods that could have been miles thick, it was so full. The trail leads to a pond and we watched a family of 6 turtles sunning on a log. When we took a step off the path onto the grass, each of the turtles plopped into the water, except for the two largest ones. I said they were the grandma and grandpa and knew better that People never go into the pond and won't hurt them. The turtles kept clicking and clicking. We said it was the little ones saying, "Come on Grandma! Come on Grandpa! Before the People get you." But as we passed, Grandma and Grandpa Turtle said, "You see. I told you. We've been here years. We know. The People won't bother us. Plus my limbs are aching too much to keep jumping in and out of the water."
Now that the grass was growing and everything was flowering, often we never made it past the pond and the trail that leads to the playground, because we got too caught up picking dandelions and watching the different birds that we had never seen in the previous states we had lived in. There was a small black bird with fire engine, red shoulders. There were birds that were so little and moved so quickly on the ground, I almost wondered if I was seeing baby chipmunks. And then it flew off. We even saw a big...well, I don't know what it was...it was brown and big like a porcupine but without the sharp pines, and it hung off a tree with it's tail trying to get at something.
Week 4 of Treatment
Each week is a rollercoaster. The first two weeks, Andrew was pretty miserable. Then, by the third week, it was as if his body got used to the chemo and tolerated it better. The pattern became that he was administered chemo on Monday, it kicked in Tuesday night, he slept constantly from then until Friday. Then Friday or Saturday morning, he'd suddenly arrive in the kitchen, feed himself, and say, "I'm feeling better. I think I'll get some exercise and go for a bike ride." I stand there gaping and praising God, surprised that each week a day like that still arrives.
It has continued like this with each week getting worse, the length of his bad days increasing, and his good days being less energetic than the previous week. On the bad days, I continually go back and forth between Andrew and the kids. I often have to drop the kids mid-sentence on grandma if Andrew suddenly needs me.
During the kids' naps, when I normally might get a little break and catch up on other things, instead it's my opportunity to return again to Andrew. There was one day last week where from the moment we woke up until 11:30 at night, I literally did not have one second by myself. When I was putting the kids to bed, I was like, "A.J., I don't know, you'll have to figure out how to get your sleeper on yourself. I'm just so exhausted." After I finally put the kids to bed, I went to my room to collapse on my own bed early. But then I realized, it was time to feed Andrew again. I must say, though, that God's grace has been sufficent. The Lord provided a second wind. When I finished injecting his anti-nausea drugs and then afterwards his meal, I then sat with him the next 45 minutes as he vomitted his anti-nausea meds and food.
Week 5 of Treatment
Andrew had began throwing up a few times on his worst days around week 4. In Week 5 the throwing up increased, despite that he is on three anti-nausea drugs now, while he had started out only on one, Zofran. His saliva from day one has gotten thicker and thicker and more viscous, so that he is constantly spitting, unable to swallow his own saliva. And now the spit is bloody from all the burns the radiation is causing in his mouth.
He often wakes up throughout the night, and I often wake up with him. Many nights this week one or the other of us has been unable to return to sleep for a few hours.
On Monday, before the chemotherapy misery had kicked in again and I was walking with Andrew and the kids, a neighbor down the street introduced herself to me. She said, "I always see lots of cars outside your house."
Andrew was standing beside me. Man, all of you who know him, if you saw him now, would think he looks awful. Last year cancer was a trip to the park compared to this year. He's boney, has acne, his neck still tight so that his head bows and his shoulders raised, his face redish tan, and he's always hacking spit into paper cups he carries around with him.
I wonder if he looks older. When Andrew first changed out of his hospital gown into a t-shirt at the end of his hospital stay in April, the nurse said, "There you go. Takes 10 years off just by changing your clothes." It didn't occur to me that it was possible for him to look outside of his twenties.
I wonder what he looks like to strangers who have no memory of how handsome he is, and if he just looks like a tan, skinny guy with bad posture. They are probably confused, and wonder if that's a tired, in-pain look that might be evidence that something is strange. I replied to our neighbor, "My husband is going through cancer treatments right now. So people from our church are always coming over to help us out."
For one thing, every Tuesday evening our living room fills with people who come to pray for Andrew. And then there's the team of four who clean our house every other week. And then there are the times our small group met at our house so that we didn't have to go to them. Also, every Monday night people from Motorola visit Andrew. They all live in Eden Prairie, because up until last summer their office had been located in town. Andrew hadn't even transferred from the Seattle project yet (he had been working on it remotely from here) to the Minnesota group, so he had hardly spent time with them before this happened, yet they are still so kind to care. Andrew loves that they visit him. So there's probably one to three times a week it looks like we're having a party at our house.
Plus, they must wonder why the Grout Doctor van always shows up whenever our lawn is being mowed (Allen mows our lawn and he's the Grout Doctor). And if Andrew doesn't feel well enough to make it to prayer meeting at church on Wednesday nights, guys come to our house to pray with him. And then there are people that sign up for his visitation slots to encourage him.
I am really grateful for all the people that visit Andrew and try to encourage him. Splitting my brain between caring for Andrew and taking care of two toddlers who were starved of my attention for two months and still are starved of their father, I usually don't even know how to encourage Andrew. When Andrew says to me, "Grace, I don't know if I'm going to make it through these treatments," for once, I am at a loss for words. I don't feel like I'm outside the situation, seeing everything so clearly and knowing what to do. I'm right there next to him, perplexed.
Andrew says that every word he says is a sacrifice, so I try not to ask too many questions. His voice is hoarse and he can't speak very loudly. The doctors had said, though, that this should be temporary and vocal chords usually do well recovering from radiation. I suppose it's not just his vocal chords but the burns in his mouth that make it diffcult to talk. On our Tuesday prayer nights, I get my detailed update along with everyone else. He makes a special effort that night. Andrew usually only says things to me if he needs something or he feels something strongly. For the latter, this means it is usually one of two things that he says: "Grace, I don't know how I'm going to make it through this," or "I'm feeling good today. I'm going to get some exercise and go for a bike ride."
People ask me what it means that he feels sick. I say, "I'm not really sure." I know it means he's amazingly tired and nauseated. I don't know if it's more complicated.
The distress he feels in his heart is a mystery to me. This is what is hardest for me. And now that it's been months since I've had a real conversation with my husband, one that he contributes to, this feeling has sneaked up on me. Have I always felt like Andrew is a complete mystery to me, the deepest part of who he is untouchable, so far from me as if in a black abyss? I have always wanted to know what it's like behind Andrew's eyes, but I am not even a man and never will be. Do colors look brighter or paler behind his eyes? Does the wind feel colder or sharper against his skin than against mine? I will never stand behind his eyes, but I will always wish I could.
What is God teaching him? Will he even remember what his thoughts were when he has energy and voice enough to express them? Sometimes I look at him and I think I see the faint glimmers of angelicness flickering from one side of his face and body like an old T.V. who's reception fuzzes then sharpens then fuzzes again. Is God completely transforming him into a different, heavenly creature without me even knowing? Will he still be able to relate to an earthly creature like me once this is over? I think, I can't lose my husband, because he's still a mystery to me. I mentioned this to Andrew. He squeezed my hand silently. I felt so loved by him. And that made me happy.
We have just completed the fifth week. We had thought the treatments were only 6 weeks long, but it's actually an additional half week. So instead of finishing this Friday, the 13th, he'll be finishing Thursday, the 19th. A total of 33 radiation treatments and 7 chemo treatments. Then the effects are supposed to get worse for two weeks after the treatments end.
Despite all the misery Andrew is enduring, there are still surprising praises. He still can swallow food when it looks so appetizing that he can't resist. The other day he swallowed a spoonful of pasta. Today he had a spoonful of brown rice. He says it's not really eating, since he uses a lot of water flushes and lets it slide down his throat by tilting his head up, but I tell him that no one expected him to be able to consume anything through his mouth, especially this late into his treatments.
And up until a week ago, he was able to taste. The radiation is supposed to only temporarily destroy your ability to taste.
Andrew also drinks one cup of ice water with a hint of apple juice every day. He coughs, gags, and spits some of it out, but most of it eventually makes it down.
Dr. Yueh had told us that Andrew would completely lose his ability to swallow from the radiation. If Andrew is able to do this much with only nine of 33 treatments left, I feel that his speech therapy exercises that by God's grace he still does each day will only cause him to improve once this is all over. Besides, most of the people the doctors observe are three times Andrew's age. I imagine he'll have have a lot more energy, determination, and time to rehabilitate.Also, they take Andrew's blood every week right before they administer the chemo. His blood counts, vitamins, etc. are doing really well. The few things that are a little low, is usually only by a point or two. When they handed me his most recent tests, I thought, How could he be doing so well? As I silently continued to process, suddenly, my heart gushed with exultation. My thoughts broke out into worship and praise to God for His grace on Andrew's body.
We continue to be so grateful for all your prayers, encouragement, and help.
Please continue to bring before the Lord our PLEES:
PRESERVE Andrew from the ill effects of these treatments as well as heal Andrew completely. That he would be healthier and better than even before cancer.
LEARN from these trials what the Lord wants all of us to learn from them.
Encouragement and the
Endurance to complete these treatments.
Strength for me to be able to take care of, help, and encourage Andrew, as well as be a mom to the kids. I love them so much.