The other day, the doctor informed us that it has been two months since Andrew's treatments ended. I couldn't believe it, because Andrew's healing is still excruciatingly slow. The doctor said that this is much more of a normal timeline for healing, and that the reason we're feeling so frustrated is because Andrew bounced back so ridiculously fast last year that we have the wrong expectations. She said most patients don't even get their feeding tube out for nine to twelve months. We aren't using the feeding tube as our gauge for Andrew's healing, though, because we don't know if Andrew's jaw is going to survive for him to eat (or have a normal face) or even if the surgeon left enough swallowing muscles for him to ever re-learn to swallow. For all we know, the feeding tube is permanent. So instead, we are gauging his healing on things like his energy-level. While he has made some progress, he still sleeps and rests the majority of a 24-hour period and his pain meds are at their highest due to all the pain in his mouth and neck region, still healing from all the burns inflicted by radiation and new ulcers from irritation during his rehab exercises. The only way Andrew can talk or do rehab exercises is with the use of copius amounts of pain medications. Although they work okay, they make him very tired and he is so addicted to them that his body goes into an extremely uncomfortable withdrawl all the time because it is so hard to keep a consistant level in his blood.
I suppose our lives must be a mystery to most of you. Now that treatment is over, things actually seem harder than ever. In the past when we had hard days we grinned and beared it, lost some sleep and recovered over the weekend or over our next vacation. Nowadays, it's as if we've had 6 months straight of tough days, with nothing but a 3 day vacation, with the burden of anticipating tough days for the forseeable future. Its like running a marathon, getting an 8 ounce cup of ice cold water, and then being told that you have at least 26 more miles to run.
Here is what one day this week was like and is representative of a lot of our lives:
I woke up and had my time alone with the Lord. The kids and Andrew woke up and we all rushed off to a morning of doctors' appointments. I have to drive Andrew to everything, not only because I need to hear everything the doctor says, but because the narcotics make Andrew extremely tired and slows his response time, making it inadvisable for him to drive. The kids got to play with the toys in the waiting room until the doctor called us in. When we followed Andrew into the doctor's room, the kids sat down on the chairs and I handed them a pile of books, while Andrew and I spoke to the doctor for an hour or so. The kids went through their piles of books and began to get ansy. Just then the doctor had Andrew sit on the table to look into his mouth. The kids jumped up from their seats, pawed at me to pick them up so they could look too. This is the part that a nurse in the room always laughs and comments on how quiet the kids get as they stare from behind the doctor as she shines a light into Andrew's mouth.
It is such a comfort to have the kids with me. They are a distraction and make me smile in-between our tortuous talks with the doctors.
We often have multiple doctors' appointments in a day. This day we managed to finish around not much later than 1pm, which worked out, because I needed to feed the kids lunch. We hardly ever eat out anymore, because it's torture for Andrew, but I asked Andrew if we could this time, because I've noticed that lately whenever we return from doctors' appointments, I get extremely overwhelmed between being starving because I haven't eaten yet and anxious about all the adjustments we have to make either in Andrew's meds, foods, routine, etc., so much that I usually get paralyzed into utter confusion and don't know what to do. So, I thought we should do something fun and relaxing for me and get lunch in Minneapolis (I'm learning that I need to take care of myself if I'm going to be able to keep taking care of my family).
Andrew injected his food through his stomach tube in the privacy of the car while the kids and I started lunch inside, so that he wouldn't add hunger to his frustrations when he saw our food. After lunch, driving home, and dropping off Andrew's inevitable new prescriptions for various pain remedies, it was way past the kids' nap time.
Andrew usually rests or naps during the kids nap too. When he's awake, he works on his jaw stretches to maintain his ability to open his mouth. Despite the heavy-duty pain meds he's on, these stretches are excruciating.
Once everyone's down and quiet in their rooms, it's as if a switch is flipped and suddenly exhaustion overcomes me. So now I have a choice: I can either take a break for myself and neglect my responsibilities towards Andrew or ignore my own body, drink some caffeine, and take the next two or so hours of their nap to make Andrew's homemade formula in the Vita-Mix and eight cups of vegetable juice in the juicer, and find out from him if there's anything else he needs. (I usually like to make the food and juices daily so that they are as fresh as possible and because they take so long to make that if I made extra batches it would take some painful amount of hours).
Once the kids wake up, it's dinner time. Dinner, of course, still has to be made. If I took a break and didn't finish making Andrew's food during the kids' nap, then the kids will have to have dinner late, I'm in chaos, and I'm trying to make all their food all at once. So I tell the kids to color or play outside, and I start on dinner. Soon after dinner, it's time to prepare for the kids to go to bed. We sing and pray together.
Andrew starts on his night routine. He feeds himself his fourth meal, takes all his meds, showers, and does his speech therapy exercises and jaw stretches. It takes at least an hour for him to prepare for bed. I wind down. And that's pretty much our day.
Other days when we don't have doctors appointments, I spend a lot of time on the phone with doctors, making appointments, asking questions about whatever miseries Andrew is encountering that week, and catching up on errands, buying his vegetables for his juicing, etc. I'm always looking for ways to save 3 minutes here, thirty minutes there, because it all adds up, and I can use every bit of it. I've started using paper plates and paper cups for everything. As much as possible, I try to do my errands at the little strip mall within a mile of our house. I realized, why am I still going to Target when I no longer live down the street from it like I did in our two previous living places? So I go to Snyder's Pharmacy for those types of things, and I pay a little more at the local grocery store, and a little more where I get my haircut. And when I finally got to take Gracie to the dentist about a tooth I was concerned about, it had to be the dentist in the same strip mall, forget if he was actually good or not, not only is it close, it deletes the research time. When I make appointments at the various places, I can make them all in person all at once when I'm already there for something else and don't have to look their numbers up online and get distracted. The good thing is that I'm starting to get to know the people there, and it's fun to bump into them. Other than the doctors and church, sometimes that's my only time getting out.
A cancer lifestyle is so different than a normal lifestyle that it often leaves Andrew and I feeling very alone and isolated in our struggles, knowing that few can relate. Typically cancer occurs in older families, not 26 year olds. People our age celebrate their youthfulness by playing sports, eating a lot and staying up late at night. Andrew feels so different now than others because he can hardly do any of the things that people his age or any age do. No one knows what it's like to be on an endless fast, getting nourishment without the satisfaction of enjoying a food's texture and taste, while watching everyone else take for granted a basic pleasure of life. As for me, most people think, "It's probably like having three kids, right?" Not really. It's like having a really really sick husband and two toddlers on top of that.
I already found being a wife and training two helpless little ones overwhelming, but when my partner and leader in it needed me more than they needed me, the kids took a backseat when it came to delving out the attention and time. As he puts it, he can barely feed himself, he has such little energy.
Imagine the doctors telling you that you would most likely lose the love of your life and the father of your children. I believe that the length of Andrew's life is in the hand of God alone, but He has given me the stewardship of caring for my husband's life. I've always had a hard time understanding the nuances of the relationship between God's sovereignty and my responsibility. I mean, if I never fed my children, I couldn't blame it on God if they starved to death. I feel very much that if anyone's going to give Andrew the possibility of surviving his poor prognosis, in one sense, I feel it relies more on me than on all his doctors. And yet, anything I do or don't do is all in the sovereignty of God and any wisdom or strength I have to take care of him is all by the grace of God. One thing I do know is that God calls me to be faithful with this responsibility.
And so my first priority is to nurse my husband back to health and stay on top of his healthcare, but the children and all their needs are the same as they were back when those in themselves were overwhelming. Like I said, it is like having a very sick husband and two toddlers on top of that.
In lieu of support groups that people with cancer or other situations go to, we find ourselves drawn to a couple of blogs of young Christian widows and widowers of cancer victims that people have sent us links to that we occasionally check. It's excruciating to read their stuff, but when I feel loneliest, or I'm just concerned for how they're doing, I can't help myself. I always come away sobbing, even if what they wrote may not seem particularly sad to other people. I guess because I feel like I can relate so much to what they are saying. I read this man, Rupert's blog this afternoon, who's wife in her early 30's passed a way about two weeks ago. He wrote that she had told him a month or two before she died that no matter what he did or didn't do, she never wanted him to feel guilty, as if he should have done something differently. I cried and cried at that. I feel guilty every day all the time.
If Andrew calls a doctor, I feel like, I should have done that for him. It's my fault. If I had been on top of that, he wouldn't have had to do it himself. It's so hard for him to communicate, particularly on the phone. If I'm late in making his food and he has to eat his hospital formula, I feel like, Why aren't I on top of that? It's my responsibility that I give him every advantage possible to rebuild his body. The week he finished treatments, he wanted to help out by feeding himself all his meals, not relying on me to inject his food when he's too tired. The next week at the doctors, we found out he lost nine pounds. I was horrified and felt like it was completely my fault by not making sure he was still injecting all his food. One comfort is that I found out at our last doctor's appointment that his body is using up so many calories to heal that it's nearly impossible to give him enough calories. And that rather than feel guilty that he hasn't gained any weight since ending treatments, the fact that he hasn't lost any weight since the 9 lbs. is already exceptional.
I also feel guilty all day about my kids. I feel guilty that quality time together sometimes consists of sitting on my lap during a doctor's appointment. Or reading the Bible to them sometimes is playing a Bible CD on the way to doctors' appointments - and that's if I remember to press "play". I feel guilty that sometimes it's so hard to concentrate on them and I'm distracted when Gracie's "date" is to come alone with us to the doctor's, because we have someone to watch A.J., and she asks me a question about the construction workers next to the hospital parking structure, and I'm too preoccupied to even answer. I want to enjoy every moment with them as their childhood slips through my fingers, and yet I wasn't even paying attention during a rare opportunity she had to have the attention not shared with her brother. Gracie wasn't even one year-old when Andrew first got cancer and now at 2.5, she initiated trying to potty train herself with the help of her brother. I play no role in it.
So much of the cancer battle is mental. This is a marathon, but we are sprinters. This is a marathon and the finish line is unknown. The mental battle is fierce, but I am mentally, emotionally, spiritually, physically worn out. These two months since Andrew finished treatment have been the most difficult of all for me. And I feel guilty that I am worn out, because then I can't be upbeat for my husband or very much of an encouragement to him.
And then I feel guilty for feeling guilty, because I'm supposed to believe and rest in the gospel that, "There is therefore now no condemnation for those who are in Christ," and "If God is for us, who can be against us?" But I hardly know my way out of my guilt or how the gospel applies in this situation. So all I am left to do is cry out, "Rescue me, God, because I don't know my way out and my mind is spinning and I can't think and I know I'm behind on so many tasks, and my kids need to eat and so does Andrew, and I need to call the doctor, and I can't think enough which to do now."
In 2 Cor. 1:8, Paul says: "We were under great pressure, far beyond our ability to endure..." And he said, "But this happened that we might not rely on ourselves but on God."
I may not know what is going on right now, and my mind may be a whirl, but I find that in the midst of my tears, the Lord begins to reassure me He is good and He is faithful, and still very much with us. And while I sometimes feel like I never imagined God would let us get as low as we sometimes have found ourselves, I know He is still merciful, my understanding of His mercy was just insufficient.
15 The eyes of the LORD are on the righteous,
And His ears are open to their cry.
16 The face of the LORD is against those who do evil,
To cut off the remembrance of them from the earth.
17 The righteous cry out, and the LORD hears,
And delivers them out of all their troubles.
18 The LORD is near to those who have a broken heart,
And saves such as have a contrite spirit.
19 Many are the afflictions of the righteous,
But the LORD delivers him out of them all.
20 He guards all his bones;
Not one of them is broken.
21 Evil shall slay the wicked,
And those who hate the righteous shall be condemned.
22 The LORD redeems the soul of His servants,
And none of those who trust in Him shall be condemned.
- Psalm 34: 15-22
Verse 20 is a prophesy of what would happen to Christ. And so these verses of God promising to deliver and to hear the cry of the brokenhearted apply to Jesus too, even though He suffered and died. So suffering and death does not mean God has forsaken or been unfaithful. What a comfort to know that Jesus preceded us in all our brokenheartedness and suffering. How it makes it easier to bear and makes one feel a Comforter can be found in Jesus.
I have seen His faithfulness in very concrete ways as well. About a month after Andrew finished his treatments, a month in which he was sicker even than he had been during his treatments, I was so burnt out, I felt totally ineffective, could hardly think, was confused most of the time, and hardly knew what I was doing, except that I knew Andrew needed to eat and the kids needed to eat. I didn't know what our needs were or how to meet any of them. But the Lord allowed someone to know.
A friend from our old church in Washington had her best friend in Canada send her 15 year-old daughter, who is the oldest girl of nine children, come to help us for 2.5 weeks. The Lord dropped grace from heaven by bringing Grace Lindeman to us. She was indefatigable and happily did anything I asked her to. She fed the kids all the more involved breakfasts and healthy meals I had been feeling anxious to feed them, but hadn't had the time or mental capacity to invest in. Every time I thanked her for her help, she always found something to thank me for: "No, thank you for letting me come," or whatever else she could think of. She was my friend, a great listener, and brought out the laughter and youthfulness that seemed to have faded away in me.
I was still very busy while she was here, running errands, calling doctors, doctor's appointments, helping Andrew, but my kids got better care and Grace Lindeman always encouraged me to take the breaks I needed. She said, "I came here to help. So that you could take care of the things I can't take care of, like talking with the doctors, and so that you and Andrew could be free to leave whenever you need to."
While she was here, Andrew began to feel a little better, so I snatched what probably would be our one opportunity for awhile for the two of us to get away for three nights. The Lord provided a spa for us, Sundara Spa, three hours away with a kitchen in our room, so I could still make Andrew's juices and give him all his foods. When Andrew had started radiation and chemo in May, I had lost my appetite. Food lost all its flavor and appeal to me and I ate my three daily meals only at of obligation to stay well enough to take care of my family. But my portions grew smaller than they used to be, and I sometimes forgot to eat a meal here and there. The spa, however, pampered us. So it was there that I re-learned to eat large meals 3-4 times a day and even to snack, as they served healthy meals and had all kinds of healthy snacks and drinks all over the grounds. Surprising, even though the food was so healthy, in three days I gained back the few pounds that I had lost in the months since Andrew's surgery in March (although I think I would be much healthier if I could gain another 10 lbs., which is nearly impossible for me...even though I know most of you don't want to hear that, I am finally sharing that because I need prayer for it.)
Andrew still slept much of the time we were there, and I had a hard time shutting off my brain. If he was sleeping and I was swimming in the pool, I kept worrying if he needed me or had had enough to eat yet. Since treatment had ended, he had been on no particular meal schedule, because it had become too frustrating for him to sit with us at meal time and watch us eat, he sometimes slept through his meals, and sometimes his stomach hurt or he felt too nauseated to eat anything when it would have been about time to eat. Our last day at the Sundara Spa, I told Andrew that I still felt like my brain was on over-drive and I still was having a hard time de-stressing. He said, "Well I feel like I relaxed here." I responded, "Well then that's all that matters." After he said that, I felt like I was finally able to unwind. By the time Grace Lindeman left two days later, I felt like I had regained a little bit of my mental capacity, and with that could begin figuring out more ways we could continue to cope with this lifestyle. What a blessing and encouragement she was to our family, bright sunshine amidst the storm.
As for other updates, since Andrew's treatments ended, we have been praying that his jaw would heal, because the doctors were concerned that the radiation had killed it. But we finally met with the oral surgeon for the first time last week, and he said that it is too soon to tell, and it is possible the jaw still may heal partially or even completely on its own. He does not recommend hyperbaric oxygen, a prerequisite to surgery, because he says cancer feeds on the same things our bodies feed on, so he is fearful that the oxygen could feed any residual cancer in Andrew's body. He also wouldn't want to do any kind of surgery so soon, because of the risk that Andrew wouldn't heal from it in his extremely damaged and weak state right now. That's totally how we felt about surgery. So that is a relief that we don't have to worry about those treatments right now.
Since they have been fearful about Andrew's jaw, Andrew has not been allowed to chew anything. So any progress Andrew had made consuming food through his mouth has been halted until further notice.
Andrew will start physical therapy in Edina twice a week and speech therapy in Minneapolis three times a week for about six to twelve weeks next Friday, Aug. 22nd. Originally, the speech therapist was skeptical that he would be able to work on swallowing with Andrew. He tested Andrew the other day, and he was surprised that when Andrew drank water, it didn't go into his lungs ("aspirate"). Fluid in the lungs would put him at risk for pneumonia, in which case the speech therapist wouldn't have even attempted to work with him on trying to swallow again.
(When Andrew would consume things through his mouth after his surgery, he wasn't using his swallowing muscles. He just tipped his head back and flushed the food down his throat with a lot of water) .
So those are two prayers that perhaps God is in the process of answering. But we must keep praying that Andrew's jaw would heal completely on its own and that he would be able to learn how to swallow again.
And of course, please pray that Andrew would be cancer-free permanently.
Oh, and I always forget to ask for myself, which may be why I'm having such a hard time. Please pray for me that the Lord would strengthen me mentally, emotionally, spirtually, physically to be able to persist in meeting the needs of my family.
"On [God] we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
- 2 Corinthians 1:11
I can't think of an acronym, but the letters start with JSCG. To sum up:
1. Jaw heal completely
2. Swallowing restored
3. Cancer-free forever
4. Grace - mental, emotional, spiritual, physical refreshment and strength for me to persist. And to gain 10 lbs.