Amy Caldwell Bixby

2011-10-24T22:16:00.004-06:00

We seem to give her back to Thee,
Dear God, Who gavest her to us.
Yet as Thou didst not lose her in giving,
so we have not lost her by her return.
Not as the world giveth, givest Thou, O Lover of Souls.
What Thou givest Thou takest not away.

For what is Thine is ours always, if we are Thine.
And life is eternal; and love is immortal;
and death is only a horizon;
and a horizon is nothing save the limit of our sight.

Lift us up strong Son of God, that we may see farther;
Cleanse our eyes that we may know ourselves nearer to our beloved who are with Thee.
And while Thou dost prepare a place for us,
Prepare us for that happy place.

That where she is, and Thou art, we too may be.

Adapted from Bishop Brent

Finally Home

2011-08-19T07:00:00.001-06:00

Amy crossed the river very gently at 6:55 AM MDT. Praise God for His grace to her and to us.

The Valley of the Shadow of Death

2011-07-06T08:01:00.008-06:00

Most of you probably thought I had posted my last update, and I thought I had too. Last week there were days when I was sure I wouldn't live 'til the end of the day, although I can't describe what's going on as physical pain. My body is beginning to shut down. We were able to find a couple of simple ways to relieve the toxic buildup in my body, and although I can still feel that I am quickly coming to the end of my life here on earth, my eyes and skin are no longer yellow, I can think very clearly, the swelling I was beginning to have has gone away, my nausea is somewhat decreased, and I can eat and drink a little. My oncologist said that as long as we can keep the toxins drained, and keep a little food in me, this process will be eased considerably. One thing that has helped has been ionic foot baths. I've seen those things advertised and thought they were a bunch of baloney, but I immediately felt relief when I had one. So if you also thought they were baloney, think again.

I began having a marked decline at the end of May. After about a week of increasing symptoms, the discomfort settled down, and I was able to function better. I thought maybe I had just ingested too much of some kind of vitamin and needed a break from the greens. But then I began having trouble with regular nausea and could not chew my raw food without getting sick. The oncologist couldn't see why I would be having these problems since my blood work was showing normal results, and my liver ultrasound didn't show anything new. She scheduled a PET scan. Just last week she called me to say that my labs were not as good as she had thought. A portion of them had been signed by another doctor on the team, and she had not seen that part. But my tumor markers had quadrupled in May and my liver enzymes were messed up. I felt relieved in a way to know that what I was experiencing had an explanation - even though it was the cancer. The PET scan was cancelled at my request. (Lest any of you feel defensive on my behalf, this "mistake" would not have changed anything - it would just have given me longer to know what was happening. Once this process starts, only God could stop or reverse it, and He doesn't usually choose to do so.)

I realized right away that we had entered the final phase of my life, and I am very, very ready for it. I've wished, as I've faced the surprising battles of the last few weeks, that someone could tell me what to expect, what I might struggle with, what to be prepared for. I'm so accustomed to researching and preparing for what is ahead. But people don't come back from the dead to guide us, and Jesus Christ is the only one who has done it perfectly anyway. So I'm glad to say, I have that Someone I need and He is daily making Himself more dear to me. I truly cannot wait to see Him.

All that said, I do want to share some of my experience in this valley of the shadow of death before it's too late. I want to acknowledge the struggles and let you know that God has overcome them. I want to tell all of you that He is doing and will do the same for you. Whether or not you see it is between you and God, but I want to shout from the rooftops that if you will just believe Him, even though you can't understand now, even though some things hurt now, He will never truly hurt you. The pain we feel is a reminder that He is making it more than better - He's redeeming things so perfectly, that the pleasure He's preparing for me is beyond my comprehension; and so, even the pain is a grand evidence of His grace.

I have been blind-sided by some of my battles since the end of May. I went througha few days of being terrified that what I had placed my faith in was not real, that I had missed the truth somehow. God took my heart, my eyes, and my mind, and made me see how everything I have learned about Him, everything that has become dear and a comfort to me, is reinforced in every single area of our lives. He is constantly showing us His truth through what He gives us - the earth, people, and especially His Word. And suddenly, all those seeming contradictions we struggle with, all the whys, the unlikely reconciling of the effects of evil with the omniscient good, all those questions about ultimate truth, popped into focus. This is not the end. God has been preparing me for what comes next. And if trouble is part of the preparation, than I can view it as painful training, but not as ultimately powerful evil.

Another difficulty was the weight of my regrets. Everyone who knows me would say that I've lived a good life. And I have. I have been faithful to my husband, I haven't abandoned myself to drugs, I've tried to do what's good for others, I've gone to church regularly, I've prayed and read my Bible, I've invested in my children, I've striven to honor my parents, I've apologized when I was wrong. But it's not enough. It's not enough. My regrets were overwhelming me. Why did I yell at the kids? Why did I rip at my husband? Why didn't I invest more in that lady? Why did I say those cutting things? Why didn't I just resolve that bitterness I've been carrying? As well as I lived my life, it wasn't anywhere near good enough. And the weight is heavy because now there isn't time to re-do or fix. Jesus Christ took my memory and reminded me of the Scripture that my mother and others have poured into it. "Truly, I tell you, he who hears my word, and believes on Him who sent me, has everlasting life, and shall not come into condemnation; but is passed from death into life." John 5:25 "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God which is in Christ Jesus our Lord." (Romans 8:38-39) "There is therefore now no condemnation to them which are in Christ Jesus" (Romans 8:1) These Scripture reminders washed over me and reminded me that Jesus has taken care of all my regrets for me.

But then I thought of the people who have regrets that we all recognize for what they are - big, ugly, havoc-wreaking, self-centered, world-altering mistakes. How do you deal with your regrets when you get where I am? Because you will be here. The most healthy diet in the world will not help you avoid this moment. Look at God's word and be comforted even more deeply than I have been. You also can have no condemnation in Christ Jesus. He doesn't care how bad you or others think your mistakes are. Any mistake of any size is enough to separate you from God in your death, but no mistake of any size is enough to keep Christ from rescuing you just as He has done for me.

As I've become more and more unable to handle what have been my responsibilities, I have struggled viciously with giving up control. I am ashamed to say how many times in the last few days I have lost control of my temper as my duties were handled by someone else or not handled at all. I've felt panicked that I won't be able to prepare my family for what's coming, to live life without me. I have dragged my family on this emotional roller coaster of trying-to-control. But God is getting a hold of my fears, and helping me to trust Him - that whatever He allows during this time is part of my preparation and the preparation of those around me to enjoy Him. My house and family do not have to be handled my way in order to accomplish God's goals.

I've thought so often of John Bunyan's Pilgrim's Progress. That man must have lived in the valley of the shadow for a long time in order to be able to describe it so well. His description of Christian's soul-scraping struggles and fears, and then victory, is the most accurate picture of what's been raging inside me that I can think of. I'm so thankful that ultimate victory is waiting.

I am aware that many people from different perspectives read my blog. I have atheist, agnostic, Hindu, Jain, Wiccan, Mormon, Jewish, Buddhist, Christian, and wildly-searching friends and aquaintances. I don't know the spiritual persuasions of many of you. But I know this. You will all face what I am facing now. I want for everyone of you to be blessed with the peace and confidence that Christ has given me. I wish that everyone could see during their whole lives what I am seeing so clearly now. God loves us all so completely. His plan has never been to destroy us, but to redeem us and all of His creation perfectly. There is another someone who hates us completely because we are the creation of his Enemy, and he never stops trying to deceive and destroy us as long as we are on this earth. Christ has offered the solution, but we have such a hard time trusting that He truly is the way. We are afraid that if He even is who He claims to be, He is just waiting to slap us into judgement, or at best to take us to a place where we will sit around and sing for eternity. (Sorry, but singing has never been one of my great pleasures, although I do love the words to songs. So I had a hard time getting excited about that view of Heaven.) He tells us so clearly what He wants for us, yet for some reason, we usually don't see it. But it's there, and you will see it too. I hope you will embrace it when you do, that you will search for it when you don't, that you will plead with God to prepare you for eternity with Him. Eternity is real, and you don't want to live it without God and His redemption of all your mistakes. You don't want to miss what is waiting for those who choose to trust God's love.

For God so loved the world,

that He gave His only begotten Son,

that whosoever believes in Him should not perish

but have everlasting life.

John 3:16

Update from the "other" Amy

2011-07-02T06:56:00.004-06:00

Thank you all for your prayers. Amy's tumor markers have jumped, and her health is rapidly declining. Hospice has been called in, and Amy is anticipating her journey Home.

During this time, we would ask that you pray:

1) That God would be merciful to Amy
2) That He would give strength, comfort and peace to Jon, Amy and the children
3) That He would be honored and glorified in the dark days ahead. That His light would be clearly seen by all who come into contact with the family. That people would be compelled to ask the "reason of the hope that lies within us."

Mrs Caldwell, Amy's mother, is traveling to Denver today.

Mom and Dad Bixby will be heading out on the 4th.

While Jon and Amy have not been able to respond to all of the many expressions of love, encouragement and prayer, they are GREATLY appreciated.

Summer

2011-06-20T10:21:00.004-06:00

I haven't been feeling as well lately. Most days I have periods of nausea, and I've been losing weight again. (I had been steadily gaining since the end of my fast in Phoenix.) I have my monthly appointment with the oncologist next week, so maybe we'll find out what's going on then. The herbal treatment I'm receiving has some significant side effects like lowering blood pressure and blood sugar. Mine tend to be on the low side of normal anyway, so I've been wondering if I'm feeling bad because of having blood sugar and pressure that's too low. We're going to try to monitor those levels routinely.

Meanwhile, while we hope for healing, I realize that's probably not what's happening. As I've watched this year's beautiful spring time I've enjoyed imagining what this would look like if it were all truly perfect. And I have such an anticipations about what God has prepared for His children. I feel like I've been given the most incredible travel package, but my family won't be able to join me yet. I feel a little bad for not being more hesitant to begin my eternity.

I have broadened my diet somewhat. When I began to have a harder time eating, I started eating what appealed to me if I was hungry - which I wasn't a lot. The green juice began making me nauseated, so I've taken a break from that.

Although this summer has not been the smooth sailing I would have asked for, we have been having a good time. I sat down last week with the summer's schedule and the master calendar. Cancer doesn't stop swimming, soccer, art or piano lessons, dentists, orthodontists, pediatricians, employers, youth groups, or libraries. And the kids are involved in it all. I'm glad their lives are rolling along - it's a pleasure to watch them grow. In July, we may be able to enjoy a special week in the mountains, and I'm really looking forward to that possibility.

Liver Ultrasound

2011-05-28T18:02:00.002-06:00

Yesterday we got the results of the liver ultrasound. Doctor Cook explained that it is difficult to compare an ultrasound image with a PET scan image, but from what they could tell, nothing in my liver has changed significantly. She said that what I'm feeling is certainly my liver since nothing else would have caused that kind of discomfort. Her best guess was that an existing lesion in my liver has grown just enough to cause trouble without being obviously bigger.

2011-05-24T10:50:00.002-06:00

Thanks for all the birthday wishes yesterday. I had a very nice 37th birthday with several nice little surprises. Jon and I ended the day by going out to a vegetarian restaurant, and the meal was delicious.

We've been without online access for a little while, and before that I was spending a good bit of time each day feeling sick from the new treatment I'm doing. I'm currently taking an herbal therapy that has some significant side effects, but in the last week, I've felt like I'm adjusting more completely to this treatment. Anyway, I'm offering my excuses for not keeping you all more informed.

Although I've felt better with my current therapy in the last week, I've also begun to have steadily increasing discomfort in my liver area over the last week. An ultrasound has been scheduled for tomorrow morning, and we'll have the results on Friday when I return to the hospital for my regularly scheduled Zomeda treatment.

Three Bedrooms, a PET Scan, and Chocolate Pudding

2011-04-05T11:41:00.005-06:00

We have been hopping busy in the six weeks since we returned from Phoenix. The mess I mentioned in my last update only got worse when we decided to switch and redecorate three bedrooms so that Cara, our oldest, could have her own room when she returned from an extended visit with our families in South Carolina. Five of the children had to sleep downstairs some nights, so the living room and family room (which is already our laundry room extension as well as our physical fitness center) began looking like temporary bedrooms. Several times I wished that sleep was something that only children need. I could spend the nights checking school work, folding laundry, and washing vegetables for the next day’s green juice. That way the days could be spent keeping the children (especially the almost-two-year-old boy) out of trouble. I had to take time out of my busy schedule for another Zometa treatment and a PET scan. Before we left Phoenix I began the process to be approved to enter another treatment routine here in Denver, but that process has turned out to be lengthy and I haven’t had any treatments other than supplements and diet since the end of February. All things considered, the results of the scan were much better than expected. First of all, my blood work all came back entirely normal – even the tumor markers, which are now 24! My oncologist told me she was very surprised to see that. However, I still have active cancer. I have a new lesion on my liver, but it is small and not uptaking very much sugar. (Click here to read a previous post that explains a little about sugar and PET scans.) The other lesions in my liver have either continued to shrink or have stabilized. One of the lesions no longer shows any abnormal metabolic activity, which means, that although the lesion is still there, it is no longer considered malignant. The lesions in my hip bones also no longer show abnormal activity. The lesions in my spine have not changed since my last scan. We praise God for these results. So many people have asked for my chocolate pudding recipe, and I’ve neglected to pass it on to anyone who has asked. I’m going to post it here for the enjoyment of all. Don’t be put off by the avocadoes. Unless you’re allergic to avocadoes (like one of our kiddos), you’ll probably never know that this pudding is made with them. I love this treat. 1 ripe avocado, peeled and seeded 2 tablespoons cocoa (use raw cacao or regular cocoa powder, not Dutch processed cocoa, to make this as healthy as possible) 2 tablespoons sweetener like agave nectar, honey, or maple syrup 1 tablespoon coconut oil (optional) ½ teaspoon vanilla pinch sea salt Place all ingredients in a food processor with an S blade (the one you usually use), turn it on, and plug you ears. (That’s just because I hate the sound of food processors, but if you choose to skip the plugging-your-ears step, the pudding should still taste fine.) I think it’s impossible to over-process this stuff, so keep processing until it looks perfectly smooth and then a little more just in case. Taste, and adjust anything you think needs adjusting. I usually add a little more cocoa and sometimes more sweetener, but that’s probably because I use such large avocadoes. Place in the refrigerator for about 15 minutes to firm it up. If you leave out the coconut oil, it won’t firm up quite as nicely, but it will still taste great. One recipe serves two people. If you enjoy dark chocolate, this is the treat for you. If you don’t, this will probably be too rich. Help! No matter how many times I try, Blogger will not let me put paragraph breaks in my post. This post sounds about as run-on as the mess in my house is.

Ahhhh...

2011-03-04T15:20:00.004-07:00

I'm sitting in the hospital getting my monthly Zomeda treatment, so I'm also taking advantage of their wireless internet connection to update. Our dial-up connection at home has always been frustratingly slow, but now it seems to be down right horrible. Either we were totally spoiled by having a wireless connection for the last three months, or our home connection got lazy after having the time off. After a few stops (Santa Fe, El Malpais National Monument Lava Falls, and Focus on The Family - Whit's End in particular), we arrived home on Wednesday last week. It was pure pleasure to walk into our house and know that we would be staying this time. We wondered if Gilead would even remember home, and it was obvious that he did. We had been home only a few hours when he pointed to the top of our dining room china hutch and asked for the candy (cannany or munumanumanum) that we used to keep up there. I have had a wonderful time making a huge mess in every room of the house as I unpack, put the clothes away, remove the clothes from closets and drawers that the kids grew out of while we were gone, empty cabinets to make room for new medications, supplements and products of all kinds, and reorganize the kitchen cupboards. It's homecoming and spring cleaning wrapped up together. I should be finished in another month or two and then we can get back to homeschooling. (That sounds suspiciously like a delay tactic, doesn't it?) The kids can be a huge help. John takes care of Gilead wonderfully well, Nathan usually cheerfully does what I ask him to, Arielle loves to help in the kitchen when she isn't drawing, and Eliana is my little organizer. This morning I walked into our family room to find her folding her basket of laundry, and then she took it upstairs and put her clothes away. (She's 7.) Jeremiah generally does his part by keeping the others occupied with his elaborate imaginary world, and Gilead gets into everything when John isn't keeping him occupied. Now don't they just sound like the kind of kids everyone would like to have? That's because this is a blog and I can portray anything I want to. And today I want to talk very nicely about my children. Check back at a later date for a different picture. Anyway - glad, glad, glad to be home.

Heading Home

2011-02-20T16:27:00.004-07:00

Sunday, February 13 - Gilead gets throwing-up sick

Monday, February 14 - Internet service is discontinued in preparation to go home. Gilead is still throwing up.

Tuesday, February 15 - Get final blood test results. Tumor markers are 52. Can't post anything for those of you who are waiting for the results due to discontinued internet service. We consider delaying our trip home because Gilead is still occasionally throwing up and constantly being fussy.

Wednesday, February 16 - Gilead finally sleeps through the night and seems to be doing better, so we spend a marathon day packing up and finally pull out of the driveway at about 10:30 p.m. Gilead throws up again less than 3 minutes from our temporary home.

Thursday, February 17 - We arrive in Flagstaff, Arizona at about 1:30 a.m., our first planned stop, although we had planned to be here hours earlier. The check-in guy at the hotel upgrades our rooms to suites for free. Nice. After a good night's sleep we drive to the Grand Canyon for a day of awe-inspiring sights. Gilead fusses a lot, but doesn't throw up again. My legs are extremely sore, and I can't figure out why. Back at the hotel, everyone gets settled in our nice suites, and I begin running a hefty temperature. Now I know why my legs are sore.

Friday, February 18 - Gilead is still not himself and eats almost nothing, but he hasn't thrown up since Wednesday, so in spite of my feeling crumby, we decide to head to the Petrified Forest on the way to our next stop at the home of dear friends, who are so dear that they don't mind if we arrive bearing sickness. In fact they're so dear that they don't mind if I deliver a baby in their home. (Which, thankfully, I didn't do this time, in case you were wondering; but I did do it 6 years ago. Long story. Just know we hadn't planned it that way.) A contrary child notifies us right after we get on the highway that he had forgotten to go potty before we left, and now he has to go bad. So we stop for an unplanned potty break. Everyone gets back in the car, and just as Gilead is being buckled in he throws up. Back into Burger King for a bath in the sink. Jon washes out the car seat with bottled water and baby wipes, everyone gets back in the car, and we try again. Gilead throws up again in about 30 minutes. And again, and again, and again. We cancel all plans for extra stops and make a beeline for Dear Friends' who don't mind if we bring a child who is throwing up...we hope. (A throwing up child is a far cry from a squaling, newborn child.) Dear Friends are truly dear friends and welcome us travel worn folks with open arms and an invitation to stay until we are all better. Which we decide to do.

Saturday, February 19 - Sunday February 20 - So here we are at Dear Friends', and our children have decided that this is much better than the Petrified Forest. The Petrified Forest doesn't have cool games, videos, and good food just waiting for them. Since Gilead and I are now much improved, we plan to hit the road again Monday morning. We're thinking of bringing one member of Dear Friends' family with us since Gilead has become very attached to her.

Wrapping Up

2011-02-09T21:24:00.003-07:00

This is my last week of treatments. Although we have entered week 13, Dr. Lodi recommended that I finish out this week. My tumor markers had dropped to 66 on Monday, and we hope to see another good drop by the end of the week. I'll have my final blood draw on Friday, and we'll get one more look at those markers before we head home. We plan to go home about the middle of next week after Jon completes the job he's working on now.

Going home holds its own challenges. We have to choose a new doctor that provides IV vitamin C therapy and get a new treatment routine rolling as well as continue with normal life responsibilities. We also need to aggressively investigate some other treatment options that Dr. Lodi has highly recommended I pursue in Denver. I'd appreciate your prayers that God will make our way clear to us and give us the energy to walk in it.

Keeping On

2011-02-01T20:47:00.004-07:00

My blood work results were disappointing today. My tumor markers remained basically the same - 76. We were really hoping for another drastic drop, but we knew it wasn't guaranteed. Through this past week, the Lord has reminded me constantly through a variety of sources that He always works perfectly, and I can continue to trust Him without reserve when things don't go the way I thought I wanted them to. What peace. I hope and pray that every one of you can have the same peace. The difficulties it usually takes to learn this are worth it.

I've been doing a lot of reading lately. I won't do a review of the following books, but they both deal with trusting our Shepherd and King and have been a powerful blessing to me. I hope some of you will enjoy them too.

Hinds Feet On High Places by Hannah Hurnard
Edge of Eternity by Randy Alcorn

2011-01-25T21:43:00.002-07:00

Short update on tumor markers. I got yesterday's blood work results back this morning, and my markers had fallen to 73! That's a drop of more than 40 points, and if that happens again during this week, I will be in the normal range. Please keep praying.

Selin and Emre - Thanks for getting in touch. I was excited to see your post. Hope you're well and life is pleasant in Turkey. Thanks so much for your kind thoughts.

Fruits and Nuts

2011-01-21T21:23:00.004-07:00

We couldn't have chosen a better place to be for cancer treatment during the winter. We have been enjoying the balmy spring-type weather here in Phoenix for most of our stay. There have been a couple of cold spells, but the kids didn't realize it was considered cold and they ran around outside barefoot. The desert nights are always chilly, but the weather during the day is beautiful.

Last Saturday we picked oranges and grapefruits at a friend's house, and have been enjoying making fresh juice since then. The kids hardly recognized the juice as the same stuff we normally buy in frozen concentrate. I use lemons regularly in my green juice, and we've been blessed with huge lemons from trees around here too. The treatment center has several pecan trees that are dropping nuts all over the yard, so I've been picking up pecans too. And do you have any idea how much better pecans are straight off the tree than the nuts you can buy in bins or bags? There is simply no comparison. I took a small bag of nuts into the treatment center one day and several of us patients cracked them and shared the meat around. It was the first time most of the folks there had tasted a truly fresh pecan.

We were invited to an interesting potluck dinner last week - all raw, vegan, non-processed food. It was hosted by a family who goes to the church we've been attending since we've been down here. I was having a hard time imagining a smorgasbord of raw food. It was difficult to visualize people walking around with plates piled high with carrot sticks and tomato slices. To my surprise, there must have been about 70 people there, and the array of food was lavish - wraps, fruit salads, nut salads, green salads, cold soups, dips, crackers, and wonderful desserts. Our plates really were heaped, and it looked every bit like a normal potluck. My favorite was a chocolate-strawberry pie, which I shouldn't have eaten since it wasn't IPT day, and my blood sugar wasn't lowered. I only had a small piece, and it was worth the step out of the boundaries. I truly enjoyed almost everything I tried that evening. I even contributed a raw apple pie which I made myself with only a little help from a recipe. (Recipes are only suggestions.) It was a very positive raw food experience.

I have been enjoying my food so much more lately. Thanks to all of you who prayed about that. I made my first cheese sauce out of cashews, garlic, lemon, and a little bit of red bell pepper last night, and tonight I enjoyed it on sprouted grain tortillas with red bell peppers, tomatoes, marinated artichoke hearts, onions, and (cooked) marinara sauce. It tasted very much like a little pizza, especially after I warmed it somewhat in the oven. Oh, well...it started out raw, anyway.

My white blood cells have been behaving wonderfully, and it's been nearly two weeks since I've needed a Neupagen shot. The counts are falling, and I will need a shot again by next Monday probably, but I'm doing so very much better than I was.

My tumor markers fell this week to 119. We are praying that that number will plummet into the normal range very quickly (30 or below) so that we can all go home. We'd sure appreciate your praying about that too. It's been so encouraging to us to see how the Lord has answered your prayers for us. In case you have wondered, getting the tumor markers into the normal range is really only the beginning of this battle, but it is a very significant part. The challenge is to keep the tumors from growing again once they have been destroyed. That is what the strict diet is expected to help with, as well as a period of maintenance treatments.

Results

2011-01-12T10:32:00.003-07:00

I met with Dr. Lodi yesterday to review the results of my PET scan from last Friday. Almost all of my tumors and lesions have shrunk by about half. Their metabolic uptake has also decreased by about half. (That's the amount of sugar that these cancerous areas are appropriating). The smallest tumor decreased by only 1/3 in both measurements, but that's still an improvement. The previous PET scan in October had showed two areas of concern, but were not positively identified as metastisized cancer - my ovaries and thymus. Both of those areas are completely clear of whatever was causing them to show up on the PET scan. So that was all good news. Dr. Lodi said that if we could compare this to a baseball game, we are on third base. With two outs. So don't give up praying for me. This is still a battle for my life, and perhaps the analogy to a game was a little light for this situation.

I was discouraged when I found out that during the week's break from the IPT treatments my tumor markers climbed to 143. Dr. Lodi told me not to let that get me down, since tumor markers are only a very narrow indicator of how things are going and will almost certainly fall again once treatment resumes - which, by the way, was yesterday.

We discussed future treatments, and I was not surprised that Dr. Lodi recommended I complete a full 12 weeks of treatment. Although I long to go home, I would hate to stop in the middle and lose the progress we've made. The goal is to get my tumor markers down to normal, and then continue with maintanance treatments for approximately a year to a year-and-a-half. Dr. Lodi is reasonably certain that this is an achievable goal over the next month. If my markers continue to fall at the pace they'd been falling before last week, we would be within 10 points of normal at the end of the treatment routine. Tumor markers are not necessarily predictable, though. Please be in prayer about that.

My white blood cells are doing better, and I would appreciate prayers that those cells will keep up with me. I'm feeling a lot better now. The cold symptoms have been rapidly clearing up since last Saturday. And I've been enjoying my food a great deal more. So your prayers are being answered. Thanks very, very much.

Progress and Regress

2011-01-04T20:51:00.004-07:00

My white blood cells have been giving me trouble again, and I'm on preventative antibiotics as well as nearly daily Neupagen shots again. I will not be having the IPT chemo treatments until my counts go up and stay there on their own. The doctor hopes that will happen quickly - about a week, but please pray about that. I'd also appreciate prayer that this bug I've been fighting will clear up. Every few days, the symptoms worsen again, and I'm getting worn out from these physical ups and downs. The combination of the chemo and flu bugs is not good.

Yesterday we got more good news about my tumor markers. In the last week they have fallen to 125! Please pray that my break from chemo will not seriously interfere with this progress. I will continue with all my other regular treatments.

One more prayer request. I've been having a hard time enjoying my food lately. Strange, since I loved it at first. Maybe the Christmas season got to me, but I've been pitching internal fits (and one or two that weren't) about not being able to eat the normal things that appeal to me. I threatened to eat a whole plate of pork roast on Sunday, but my supportive husband refused to be intimidated by my tantrum, and patiently reminded me why I'm doing this treatment regimen. All of you who have contributed to help pay for this option are also keeping me accountable. I sure don't want to waste your investment in me. In the last few days I started praying that the Lord would help my to enjoy me food and be thankful for it.

I want to tell you one very encouraging story from another patient. This man is a doctor who was recently diagnosed with stage IV pancreatic cancer. (Pancreatic cancer has only about a 5% survival rate.) His oncologist recommended to him, doctor to doctor, that he decline the standard treatment and prepare to die. He came here about a month ago, and although this world of alternative medical treatment was a real challenge to his training, he decided to embrace it. His tumor markers very rapidly fell into the normal range and his PET scan over the weekend showed absolutely no unusual metabolic activity. He is one grateful man. It was funny to me, after all my food struggles lately, when he told me today that he is asking God to help him enjoy the food he has now committed to eating for the rest of his life.

Happy New Year

2010-12-31T17:56:00.003-07:00

I had treatment today, but I'm home now and enjoying an evening with the family. We were very excited to find out that my tumor markers have fallen to 153 now. A normal tumor marker is 30 or less, so we still have a way to go, but the progress so far is remarkable. On January 7, I will be flying back to Denver for a PET scan so we can get a visual of the progress. I will have completed 7 weeks of treatment by then, and the scan will provided the information we need to decide how to continue. I was initially told I should expect to stay here for 8 to 12 weeks. From what I understand, how long I should continue here will depend on how many more bi-weekly IPT treatments I will need. Once I get beyond needing these treatments 2 times a week, I can go home, continue with most of the other treatments in the Denver area with various providers, and fly back here periodically for maintenance treatments over a period of a year or so. ....a year or so... That sounds pretty good. We were thinking a few weeks ago that my life could be over in 6 months. Now we're cautiously looking out over the next year and making treatment plans.

2010-12-29T21:51:00.003-07:00

I've needed 2 more Neupagen shots since Monday, but finally today my white blood cell count rose to a healthier level. I also began feeling significantly better today, although I'm still very tired. My wbc's dropped low enough that I needed 3 days of IV antibiotics to prevent the onset of bacterial infections. I sure hope this does not become an ongoing problem and would appreciate your prayers concerning that.

If you want to know more about the kind of chemo treatment I'm receiving, click here. I do have a word of caution before you read this site's explanation. There is a glowing report that a patient can receive this therapy with little or no side effects. You might begin to wonder what went wrong in my case. If someone has never received any chemotherapy before, the lack of side effects from IPT therapy is remarkable. But most of us who are seeking out such non-conventional therapy are doing so because we've already had standard therapies and the cancer has returned. So most of us do have side effects similar to those we had with our standard treatments. They are usually delayed and often less severe, but those effects are still there.

IPT therapy is only one of the many therapies I do on a weekly basis. To answer the questions of several folks, the diet I am doing is very similar to that used in the Gerson therapy. The common thread through almost all alternative cancer treatments is a mostly raw, vegetarian or vegan diet. When my doctor was asked this week by a fellow patient why he uses any type of chemo at all, he explained that most of the patients he deals with (reccurrent stage IV cancer patients) do not have the time left to them to deal with their cancers with diet alone. So he attempts to stop the aggressive cancer growth with IPT, and then rebuild healthy cells with the other therapies, including the raw diet. And I am thankful to the Lord, that so far, this approach is showing success for me.

Merry Christmas

2010-12-26T11:26:00.004-07:00

I hope all of you had a very pleasant Christmas. We sure did. The kids have received many thoughtful gifts from lots of people. This has probably been their "biggest" Christmas ever. Several of them had asked me what we were going to do for Christmas. They understood that this year would be quite different from the norm, and they were worried they would have to forgo presents altogether. But many of you made sure their Christmas was beyond their dreams. They've had so much fun.

The review of my ongoing blood tests a few days ago brought good news. My tumor markers have begun to fall again. As of a week ago, they had fallen to 175. So we're still making progress. My PET scan is scheduled for January 7, and that will give a picture of how much things have changed.

Although the chemo I'm receiving at this treatment center is a world different from standard chemotherapy (it's only about 10% of the standard chemo dose for one thing), it still has side effects that tend to accumulate. I had lots of trouble with red blood cell counts during my first round of cancer and chemo, but this time, it has gone much better. Probably that's because of all the green juice as well as the regular chlorophyll supplements I've been taking. My white blood cells, on the other hand, have been presenting a problem. I've had to have weekly Neupogen shots to boost my white blood cell production. Last week, I began fighting a severe cold which evidently complicated matters even more because I had to have 3 Neupogen shots in 6 days. I hope the need for that diminishes. That's an expensive shot - $400.00. At least I'm not being prescribed Neulasta which is what I was given for white blood cells in 2009. That shot costs $4,000 per dose.

I have also begun losing my hair again. It's not coming out fast and furiously like it did the first time around, but I'm definitely losing much more than is normal. People who choose this treatment option with the first occurrence of cancer do not tend to lose their hair. But since I've already lost mine once, hair loss is much more likely to happen again. At least I've already been there, and I know the positive aspects of being bald.

The Lord has been so dear to me during all this. He has given me a true anticipation for whatever path he chooses to take me down. Trusting him completely is such a burden-reliever. And he doesn't let us down.

2010-12-16T16:03:00.002-07:00

This will be quick, but I wanted to let you all know how it's going.

First of all, the finances have been coming in a week at a time, about when we need them. The youth group at Tri-City Baptist church in Westminster, Colorado (our church) hosted an incredible fund raiser for us that blew everyone away. I didn't get to be there, but these guys evidently did an incredible job pulling together a nice meal and a silent auction. I have heard nothing but enthusiastic reviews of the whole event. Jon and I were so touched by everthing that folks there did. They raised more than $14,000 for my medical expenses. A morning show radio host in Greenville, South Carolina, Russ Cassell, also actively asked for funds for my treatments. His efforts provided about $8,000. There have been numerous gifts that have made this all roll along for us.

The treatments are still going well. My tumor markers fell drastically, then plateaued last week. Treatment was adjusted this week, and then we'll see what happens. I'm feeling great - just as healthy as ever. Our whole family is together here in Phoenix, and I'm so glad we don't have to be separated over Christmas. We're having a good time here. Although spring weather at Christmas just doesn't seem quite right.

Enjoy some of these good old Christmas treats in my honor. (My favorites are...um...used to be...sausage balls, bacon wrapped asparagus bites, and cheesy shrimp dip.)

Blessings

2010-12-07T16:11:00.002-07:00

I'm now about 3 weeks into my treatments here at Oasis of Healing. I had a consultation with Dr. Lodi last week in which he gave me very encouraging news. My tumor markers have begun to fall steadily from their high of about 265. He said my other tests have shown that I am very strong physically and all the results were "perfect". We sure have been encouraged. Part of my treatment here has been a 14 day juice fast, which I am almost done with. I've been drinking 5 to 6 quarts of green juice each day. Even the veteran juicers here have been surprised at how much I've been drinking, but I find its the only way to keep myself from succumbing to the urge to pick in what I cook for the family. All the green juice has had a pretty profound effect on some of the other treatments, and things seem to be going very well.

Many of you have helped us in lots of ways - meals, gift cards, donations to cover the medical expenses, getting us settled here in Phoenix. It is impossible to let you know how deeply thankful we are, and I don't even really know how to begin. Jon and I have been overwhelmed at the down pour of love and caring we have received from hundreds of people, many of whom we don't even know. We have moved beyond the showers of blessings that the song talks about, and are fully into the flood. Thank you, thank you, thank you.

Thanksgiving Dinner

2010-11-25T18:20:00.003-07:00

Just thought you all might enjoy a review of my Thanksgiving dinner. Although I didn't have any treatments today, the center did provide a raw vegan meal for me. I'll list the items on the plate clockwise, starting at 1:00.

Mock mashed potatoes - blended cauliflower and macadamia nuts with mushroom "gravy" - so-so
Stuffing - I think this was a nut pate with regular stuffing seasonings - very good
Mock Turkey - not sure what this was made from - maybe mung bean sprouts? - okay
Green Bean Casserole - made from broccoli stalks and onions - very, very good
Cranberry relish - yummy, yummy
Waldorf salad - delicious
Dessert (not shown) - pumpkin pie with a nut crust, carob mouse pie - both were delicious!

My first experience with a vegan Thanksgiving meal was a very nice experience.

Hope you all enjoyed yours!

First Week

2010-11-20T22:21:00.004-07:00

I haven't had much access to the web in the past week, so I'm slow in letting you all know how much I appreciate all my anonymous friends out there. It's impossible to completely say how very much we're thankful for what you're making possible. The folks here at the center have already been impressed with the kind of support they have seen us receiving. I hope it will be a reflection on the kind of God we serve.

I've had a full week's worth of treatments now, and so far so good. Saturday's treatment was with Zomeda - a drug to attack the bone cancer - and it made me feel pretty uncomfortably flu-ish for about 24 hours. None of the other treatments have caused serious discomfort. The chemotherapy is administered after insulin has been used to drop my blood sugar, so I get a mighty blood sugar ride. It's not exactly pleasant, but it's all worth it because I get to eat dessert after the treatment to bring my blood sugar back to normal. I haven't eaten sweets for months now, so that's a real special treat. (Even healthy desserts are limited to after chemo treatments.) And those desserts are made from entirely raw vegan ingredients. You would never have known the difference between the almond fudge I had on Thursday and normal fudge. Today I had coconut-almond macaroons which I also loved. It's absolutely amazing what the chefs here do with raw veggies, seed sprouts, and nuts. I'm certainly not suffering. I will be providing many of my own meals beginning next week, since, although the food is delicious, it is also very pricey. Because I've been eating raw food since late July, I feel prepared to handle my own food needs. I sure am excited to try making nut cheese on my own. We did that in "cooking" class this week and the result was very similar to feta cheese. And I had thought I would never be able to eat cheese again.

Last week I have had 4 Vitamin C IV treatments, 1 infrared sauna treatment, one oxygen treatment, 1 chemo treatment (called IPT therapy), 1 Zomeda treatment, 1 specialty massage (too intense to be a pleasure massage), 1 treatment I would rather not go into detail about (a good one - but you'll just have to guess what it is), exercise classes, food preparation classes, several consults with the head nurse to educate me on the oral vitamin therapies, and a 3-hour consultation with the doctor in charge, Dr. Lodi. Last week was light since I didn't check in until Tuesday afternoon and since it was my first week. Next week, several of the therapies I listed will be doubled (not the vitamin C and thankfully, not the Zomeda which will only be given once a month), and several others will be added.

I've gotten to know many of the other 20 or so patients. What a diverse group! I haven't found two from the same state yet, and several are from other countries. Today I learned from another patient that all the patients who are currently involved in treatment and have reached their 5-to-6-week mark have received good news from their mid-point PET scans. The extent of the good news varies from person to person, but all are evidently doing better than standard medicine had predicted. What an encouragement!

Website and fund raising...

2010-11-12T18:06:00.002-07:00

This is Amy's sister in law, Amy C Bixby :) As we share names, I have given myself permission to "highjack" Amy's blog just long enough to share with you, who are following this blog and offering prayer support to Amy, the new tools that are available for staying updated and knowing how you can help.

Amy's friends and family members have started a fundraiser to help meet the staggering financial needs that Jon and Amy are facing. We have also started a website which we will update with specific prayer needs (as seen by those of us looking on) and other bits of news.

Please click HERE to be directed to the website.

Thank you to all of you for your overwhelming support and generosity.

Wonderful Doctor

2010-11-08T13:39:00.002-07:00

We met with my oncologist today to find out how much she is willing to support alternative treatment. She was very supportive of our decision to try another type of treatment, and said she would do whatever she can to move this treatment option along. I won't go into all the details here on the blog, but just know that I sure am thankful for an open-minded doctor.

Treatment Options

2010-11-07T10:35:00.002-07:00

We have looked at dozens of websites, read dozens of articles, made dozens of phone calls as we've been researching treatment options. The treatment center in Loveland, Colorado does not offer any more cancer treatment cycles until January, so we've ruled out that center. A treatment center near Phoenix, Arizona seems to offer a very wide and encouraging range of treatments. They offer therapies that have been successfully used in Germany as well as other alternative therapies. I'm meeting with my oncologist tomorrow to find out to what extent she is willing to work with the doctors at this center. The treatment would require about an 8 week stay, and like I said before, many details need to fall into place for this option to work for us. Some of those details are already beginning to come together.

We would appreciate your prayers. We know that God already has this all mapped out for us, and we trust him to show us his way. If this isn't part of his plan, we don't want it.

2010-10-29T22:30:00.003-06:00

The news we got this afternoon was not good. The oncologist reviewed the PET scan results with us, even gave us nice glossy pictures of all my insides. The scan showed that the cancer has spread to my liver, spine (T2), hips, and possibly my ovaries. The suggested treatments offer a 10% chance of survival for 5 years. There is no hope offered for cure.

Isn't it astounding, that being deathly ill, I feel better than I've felt for years? I've continued to make my spinach-lettuce-carrot juice three times each day and to eat mostly raw food. We'll be checking very seriously into the lifestyle center I mentioned last time.

I have not given up, but I'm constantly aware of the probablity that I won't live for very long. I pray for a miracle or for some unsung yet successful treatment, but I'm ready to accept moving to the next life. I ask all of you to pray for my family. I've got the easier load to carry right now.

Neither life not death shall ever

From the Lord His children sever;

Unto them His grace He showeth,

And their sorrows all He knoweth.

Lisa Sandell - translated from Swedish by Ernst W. Olson

O the deep, deep love of Jesus,

Love of every love the best!

'Tis an ocean full of blessing,

'Tis a haven giving rest!

O the deep, deep love of Jesus-

'Tis a heaven of heavens to me;

And it lifts me up to glory,

For it lifts me up to Thee!

Samuel Trevor Francis

Good News – Bad News

2010-10-27T15:46:00.003-06:00

Last Friday I had a routine visit to the oncologist’s office for blood work. I also had my annual mammogram. Dr. Cook (the oncologist) told me that my blood work looked better than it ever has since I’ve been her patient. My red blood cell counts have doubled, and otherwise the lab results were beautiful. I found out that Dr. Cook has attended at least one seminar on treating cancer with a raw vegetarian (alkaline) diet, and she was positively impressed by what she learned. Dr. Schroeder (the doctor who handles mammograms) scared me when he said more imaging needed to be done - that usually means something ominous showed up in the first pictures -, but it turned out that the technician who took the original pictures had failed to take one that is part of my prescribed imaging. The additional imaging was done, and everything looks great.

Monday morning, Dr. Cook called me with further results from the blood work. A tumor marker (that’s the blood count that indicates a growing tumor) has risen from about 30 to over 200. Barring a mistake in the blood work, that means the cancer has returned. I will be having a PET scan at 8:00 a.m. tomorrow (Thursday) morning and a follow-up visit with the oncologist on Friday. Chemotherapy is her recommended course of treatment, but I’m not interested in doing that again. We have already begun to check out a lifestyle center near us in Loveland, Colorado, that uses several alternative therapies to treat cancer. Treatment at any lifestyle center requires a stay of several weeks, so a lot of details will have to fall into place for that option to work for us, but we are praying about it. We would appreciate many folks praying along with us about all of this.

9News Interview

2010-09-30T21:05:00.002-06:00

I was interviewed in July by Kim Christiansen of 9News in preparation for Breast Cancer Awareness Month - October. This afternoon, a portion of that interview was aired during the 4 p.m. news hour. Click here if you're interested in watching it.

Food Food Food

2010-09-30T17:08:00.003-06:00

I guess it's time to let you know how I'm surviving the diet. I'm in my third month now, and although I can't claim to have been a perfect raw vegetarian, I've done reasonably well. It's true that my taste buds have begun to change, and I appreciate things that would have been disgustingly tasteless to me before. I had become too accustomed to my overuse of salt. I've been drinking about 12 ounces of freshly made spinach-romaine lettuce-carrot juice 3 times each day. Several of the symptoms that were associated with the Tamoxifen I take daily have now significantly diminished. I sleep much better, and my energy has recently surged. I'm glad to have visible results from this new way of eating. Otherwise, it would be very hard to stick to veggies, sprouts, and occasional salmon.

Sometime in the last month, I became very discouraged by not being able to anticipate my meals. It truly made me angry. After some time of feeling sorry for myself, and I remembered a Bible verse my mother quoted to me regularly when I was a child. I think I remembered it because I was quoting it to one of my children. Do all things without complaining and arguing - Philippians 2:14. That verse has taken on a new life for me and I've been trying to practice it.

I Want to Go to Dairy Queen

2010-08-11T20:34:00.007-06:00

During my recent visit with the oncologist, we corrected some misinformation in my records. The pathology done after my surgery in November 2008 showed that I had 5 lymph nodes that were cancerous, but a transcription error changed that number to 3 on my subsequent records. My ten-year prognosis had to be refigured based on the correct number, and the outcome was not encouraging. Before the mistake was corrected, my raw recurrence risk was figured to be 60%. The treatments I had received gave me a possible 20 percentage point advantage, bringing my recurrence risk down to about 40%. After the numbers were refigured, my raw recurrence risk is now calculated to be 83%, and with the treatment advantage, as low as 60+%. None of my treatment would have been different with the correct information.

When I talked to the oncologist about the problems I've been having with the Tamoxifen, she was about as blunt as she's ever been. She told me that my decision whether or not to keep on taking the Tamoxifen is basically a quality-of-life choice. She said that since statistics indicate the cancer is almost certain to return, I have to decide whether I want to burden my next years with these side effects or just make those years as pleasant as possible for my family and me. She was not eager to encourage me to drop the medication, but she was not opposed to other "quality-of-life" choices.

I knew my recurrence risk was high, so this wasn't exactly devastating news. I've known for quite a while that a mistake had been made in my records, so I was aware that the statistics I had been given were probably not accurate. And to make the picture brighter, I had recently begun doing more extensive research into alternative methods of reducing cancer recurrence, and the information I came up with was very encouraging.

Back when I first started this blog, I was, frankly, overwhelmed and discouraged with all the information on alternative treatments that I was receiving. But over the past two years, we have had time to sort through information and decide what we found trustworthy and reasonable. For the time being, I have decided to keep up the Tamoxifen while at the same time being very careful with my diet. I am trying to eat mostly raw fruits, vegetables, grains, no sugar, almost no meat. I've added a few specific items to my daily diet that are supposed to be very beneficial.

I'm about a month into this now, and it's becoming slightly easier. At first, all I thought about was food. Although I thought I didn't have a sweet tooth, I was craving Dairy Queen, chocolate, and cookies. I dreamed about steaks and hamburgers. I mostly felt hungry and grouchy even though I was eating nuts, fruit, and salad all the time. A couple of days ago, much to my relief, I finally felt satisfied with my meals. Today, we got coupon in the mail for a Dairy Queen Chocolate-Covered Waffle Bowl Turtle Sundae - my very favorite 1,000 calorie DQ treat. I hope I can get some satisfaction from just looking at the picture. Jon said if I can stick to this diet, maybe he'll get me one on my birthday. That's almost a year away. I'll be so healthy by then, I probably won't want one. I want one now. Right now. (Stomp Stomp Growl)

Has anyone noticed how, even in desperate circumstances, will power is hard to come by?

Big Weekend

2010-07-13T07:41:00.003-06:00

Earlier this summer, the kids and I invited our neighbors to join us in a neighborhood garage sale. Last weekend we had our sale, and more than 50 homes participated. It was an exhausting weekend, but, collectively, it was worth the effort. All of us were thrilled to get rid of stuff (although many of our things just traded houses right here in our neighborhood), we earned some cash, the kids got business experience selling Pepsi, we met neighbors we didn't know before, and at the end of the weekend our neighborhood donated a trailer truck full of items to the local Association for the Retarded and Cerebral Palsey Thrift Stores (ARC).

Other garage sale fans out there ought to check out this site: http://garagesalefinder.com/. The lady who runs this nation-wide site created a map for our community sale that we then were able to make available in our online advertising on Craigslist. It worked like a charm. Resellers of all kinds came out in force, and largely thanks to them, we all have more room in our garages now. One family even drove here to Denver, all the way from their small Kansas town, just for our sale. They came with a pick-up truck and a list of needed items for their friends and family, and were shopping garage sales instead of department stores.

Our kiddos had so much fun. I told them they could have the money from whatever they sold, so when it came to cleaning out their closets, I had almost no resistance. They each set up a blanket with their things on it, and watching their excitement each time they sold something was almost as much fun as selling my own things. One of the boys bought a Hot Wheels race track from a neighbor for $2.00, and almost immediately resold it for $5.00. This is our version of Junior Achievement, I guess.

I can't believe how quickly the summer is coming to a close. School is right around the corner again. Oh, well...

I have a routine visit with the oncologist next week. Everything still seems to be going well, except for an accumulating list of side effects from the Tamoxifen (my daily chemo pill that's intended to reduce recurrence risk). I'm doing some serious thinking about that medication, and I'll be discussing some of my thoughts with the doctor. I don't expect she'll be very happy with me. But she's a very reasonable doctor and in the past has been open to non-standard approaches.

Another Book Review - Johnny Tremain

2010-06-25T11:43:00.003-06:00

Johnny Tremain, Esther Forbes, 1943, Newbery Medal Winner

In honor of Independence Day, I wanted to post my review of this well-know book. Unfortunately, it seems to have fallen from favor in recent years, and I hope to encourage folks to enjoy it again.

I read this book for the first time many years ago. I enjoyed it then, and I thoroughly enjoyed it when I read it again recently.

I have heard others describe this book as boring, and perhaps that is because Esther Forbes’ descriptions are lengthy and detailed. The time in which she wrote valued descriptions in literature. But I was awed by her skill with words and history. Her writing immediately drew me into her setting. I laughed many times at her subtle humor, and as I read, I felt as if she were telling a story she herself had witnessed. Her characters were intricately developed and life-like. Her ability to fully color her story’s people was phenomenal.

Johnny, as the main character, is a pure pleasure to watch grow from a likeable, gifted, arrogant, self-centered fourteen-year-old boy into a sobered, more thoughtful, still arrogant young man. His life in Boston as the Revolutionary War approached is fascinatingly chronicled. His thoughts and feelings about the people in his life are touchingly complex. British-occupied Boston in the 1770’s is a very interesting setting in which to explore the complicated reactions a young man has to an enemy he is beginning to know and appreciate as individuals.

I think this book has value on several levels. It is a superb example of masterfully written children’s literature. The story is plain-old interesting. It offers pointed observations and powerful lessons in human nature. And its Revolutionary War setting is an unforgettable history lesson.

Read this book. Read it to your kids. It’s worth every minute.

I noticed that Esther Forbes won a Pulitzer Prize for her book Paul Revere and the World He lived In. Re-reading Johnny Tremain has made me put Paul Revere at the top of my want-to-read list.

Summertime...

2010-06-09T14:24:00.004-06:00

...and the livin' is easy. Actually, we are finding ourselves just as busy as ever, just not with school work. (Yeehaw!) The weather has been beautiful here in Denver. A little hot on some days, but nothing like what you folks in the Southeast have regularly. I've felt well for the most part. The Tamoxifen that I'll be taking for another 4 1/2 years pulls some mean tricks on me sometimes, but I hope to adjust as time passes.

Meanwhile, life is going pretty smoothly. My topiary-hair continues to grow, but the newer growth is pretty straight. I figure the next time I get a hair cut, most of the curl will be gone. It still gets really bushy when the wind blows or when I don't use the right styling products. I'm trying to work up the humility to post a picture of a bad hair day for everyone's enjoyment. It would certainly make you laugh.

Gilead was dedicated to God on Mother's Day. (The pictures below are from that Sunday.) It's hard to believe that exactly a year before, we were in the hospital with an itty bitty little preemie, waiting to see if he would breathe sufficiently on his own, and wondering what kind of damage the chemotherapy had done to him. So far, he is doing remarkably well. His development has been normal and a pleasure for all of us to watch. He's trying to say words now. One of his favorites is "rum-rum". You'll have to imagine that with a little bit of a growl - it's the sound he makes when he's riding a toy with wheels or playing with cars. He has cute little efforts at words like "don't touch", "uh-oh", and "night-night". Having seven children doesn't make these little growing steps any less exciting. Recently, one of his favorite things to do has been to climb the stairs and throw Hotwheels through the railing to the wood floor below - not good for the cars or for the floor, but it makes a really cool noise. Anything that makes noise is exciting - vacuum cleaner, lawn mower, weed eater, hammers, noisy siblings, music. I'm glad he likes it because he's sure not going to get away from it.

A Camera Story

2010-04-18T20:05:00.002-06:00

I mentioned last time that my Canon PowerShot camera (which I loved) got broken at Christmas. After calling Canon and finding out how expensive repairing the broken LCD screen would be, I decided to look for a camera on eBay. I almost immediately found a slightly used PowerShot for $85.00 with free shipping (about 1/3 of the retail price) and was excited to snap up that deal. It works just wonderfully, and I didn't have to worry about learning different features since it is identical to my old camera.

But the most interesting part of this story is that while I was looking for a replacement for my camera, I noticed that people were succesfully selling broken digital cameras. I decided to put my damaged camera on eBay with a complete description of needed repairs and a starting price of $0.99. Imagine my surprise when the auction closed, and the camera had sold for over $50.00!

So you might be wondering where the pictures are, since I have a working camera again. Well, now there seems to be a problem with Blogger because I have not been able to upload any pictures over the last several days. I don't think it's a problem with my computer since I've uploaded in other places. I'll keep trying and if anyone has any suggestions, just leave a comment.

Chiropractors and Topiaries

2010-03-22T16:47:00.004-06:00

As I was driving home from a birthday party last weekend, the pressure in my chest became so irritating, that I was sure I could not live with this symptom indefinitely. The kids and I stopped to see our chiropractor on the spur of the moment. He adjusted me and explained that a couple of misaligned vertebrae could have been causing the heaviness in my chest, but he didn't make any grand promises. Over the next two days, however, my cough went away, and I began to feel much better. I haven't had any trouble since. Yea for a good chiropractor!

And yea for a good beautician too. Jen gave me another hair consultation last week. These appointments can hardly be called hair cuts yet. My hair has become wildly, tightly curly. It's fun, but as it grows, I don't know what to do with it. My sweet husband called me Topiary Head, which I thought was a hilariously apt description for some of my bad hair days. As Jen was handling my hair at her salon, she referred to it as The Beast a couple of times. I really liked her styling ideas. But since my camera broke at Christmas time, you'll just have to imagine what I look like as a nicely styled topiary.

More Tests

2010-03-12T15:38:00.001-07:00

I found another lump under my arm in February, so on Monday afternoon, I went to the oncologist to have it checked out. She was able to get me right in for an ultrasound and then (amazingly) a biopsy too. Usually, that would have required three separate appointments. Then she shooed me on over to the emergency room for a round of tests on my heart and lungs. When I had told her that I’d been having pressure in my chest for several weeks as well as a dry cough, she said, “Amy…people go to the emergency room for that. Did you think about that?” I had thought about it, and I’m familiar with how fruitless those visits often end up. But Jon and I were also worried about these symptoms so, off we went (…after we went out to eat for a belated Valentine’s date. We’d both missed lunch, the kids were being cared for, and I figured that after weeks of pressure in my chest, time to eat a meal wouldn’t make any difference).

In the emergency room, a series of tests were performed on my heart and lungs, all of which came back resoundingly normal. I was released before 11:00 p.m., and we were home and in bed before midnight. The next day the doctor called to say that the biopsies had also come back entirely normal. This was exciting, especially because what had been removed for biopsy was a lymph node that had been missed during surgery a year-and-a-half ago. It was completely clean of cancer or abnormal cells.

I’m still having pressure in my chest and a cough, but now, the assumption is that my heart or the muscles on the chest wall have been affected by the chemotherapy and/or the radiation. From what I’ve learned, these symptoms may come and go over the years. I hope they’re mostly gone.

All these tests took up only half of a day. Jon and I couldn’t have been more pleased. This could have taken most of a week – or even more - and lots of miles on the interstate. Instead we had one busy day, that’s all done, and the news was all good. And we didn’t have an accident on the way home.

Sniffles and Sneezes

2010-02-20T13:31:00.004-07:00

Gilead began to show slight cold symptoms on Friday. On Sunday morning we noticed he seemed to be struggling to breath, so we took him to an urgent care clinic near us (our doctor's advice - he thought a little oxygen and a nebulizer treatment might be all he needed), but the doctor there called an ambulance right away. He was admitted into Children's Hospital on Sunday evening, after being observed in the emergency room for several hours. Monday morning, he was moved to PICU since he was not responding to breathing treatments. One nurse mentioned something about collapsing lungs, but another nurse stated it as "somewhat deflated" due to not being able to breath deeply. I'm still not sure how to interpret all of that. Anyway, he stayed in PICU until Wednesday afternoon when he turned a corner, and rather suddenly began doing much better. His oxygen levels kept dropping into the 70's, so he was kept at Children's until he could hold his own oxygen levels up. That happened Thursday night for the first time - he didn't need oxygen all night. He was very much improved in every other way, and was getting very, very tired of being confined to a crib or my lap. He crawls now, and he was very upset at being "tied up". Friday morning he was released, and we were glad to drive home, even in the slushy, slippery snow we just got.

Several folks have asked about RSV. Two cultures were done looking for that virus, but that and all the other cultures that were done came back negative. So we don’t know what virus caused this, but the treatment would have been the same for any virus, so that wasn’t an essential piece of information.

I just want to say here how much we appreciated Children’s Hospital. The nurses were very gentle and made me feel like they enjoyed Gilead’s sweet moments and hurt for his painful ones. He had to have an IV inserted into his neck since his arm veins kept blowing - and because he has such nice rolls of fat his veins were hard to find. (I’m very proud of his roly-polyness.) Anyway, in spite of the Gilead’s great discomfort and anger during all of this, they treated him so gently and kindly. I thought a couple of the hospital staff there were going to cry too. A nurse from his first evening in the emergency room saw me later and told me she had been keeping up with his progress, even though she wasn’t assigned to him. That made me feel very good.

Having a nine-month-old in the hospital is quite a job. Gilead would not tolerate his nasal cannula, and kept pulling it out and sticking it in his mouth. Multiple times, he pulled off his leads (the little electrode things stuck to his chest that monitored his vital signs), and stuck them in his mouth. He pulled his pulse-oxygen monitor off his toe, and chewed on it. He found the end of his IV port and chewed that. He could be depended on to grab the nurse’s stethoscope and put it in his mouth too. It was even written in his charts that he put everything in his mouth. I guess not all babies do that?

We are so glad to be home. We’re all sleeping better and hope to be done with all this drama for awhile. I am looking forward to a quite, calm week of home schooling and home cleaning. (Boy, does this home need it! A week of being away has taken its toll.)

Aches and Pains

2010-01-28T21:29:00.003-07:00

Last Sunday morning, as I was sitting in church, I watched my wrist swell up, and a slight pain that had been there for weeks spread over my hand and arm. My routine check-up with the oncologist was scheduled for Monday, so she looked at the area and was very concerned. Her instructions were to go straight to the emergency room if the swelling and redness got worse, or if the Augmentin she had prescribed did not begin to improve the problem in a few hours. It did get worse over the next 24 hours, so I went, rather unwillingly, to the emergency room. I felt like a classic hypochondriac walking into the ER, alone, looking healthy, and feeling reasonably well (although my muscles were sore, and my wrist was hypersensitive - I really didn't feel sick). But after a brief examination and review of recent medical history, the doctor decided to admit me. Evidently, I have a kind of staph infection called merca (MRSA - antibiotic resistant staph). It was caused by some unknown intrusion into my left arm, which had been weakened by the lack of lymph nodes. I got a round of IV antibiotics and some hefty oral medication. The infection seems to be responding well to the treatments, so (much to my relief) I was discharged yesterday evening with prescriptions for big-gun antibiotics.

I'm feeling very well now. And I've already demonstated how accurate my wellness feelings are...I'm sure I'm all better now...I bet I don't even need those nasty antibiotics...

Travel

2010-01-17T21:14:00.002-07:00

We are home again after being gone for almost a month. Traveling with seven children is an adventure all by itself.

We left home at 5:00 a.m. on December 17. The kids did pretty well. For the most part, they didn’t require too many extra potty stops. They didn’t get car sick, although we were prepared for that with buckets, plastic bags, paper towels, and Dramamine. (Once, back in the days when we only had five kids, four of them got car sick within five minutes of one another. We learned our lesson about being prepared that time.) We brought our significant collection of Focus on the Family Radio Theatre recordings, so we had plenty of audio entertainment. Jon scheduled stops every four hours or so, and we got nice little breaks from the car. Gilead was very impatient with the car seat by the time we got to our hotel the first night, but all seemed to have gone well.

Just as we pulled into the parking lot, Jon noticed we had no oil pressure. My heart sank. I envisioned being stuck in this hotel for several days while our engine was rebuilt. It wasn’t the stuck part that was worrying me. It was the money part. But amazingly, the oil pressure had dropped at the very minute we pulled up to the hotel, so no damage had been done. Although Jon wasn’t sure why or how we were losing oil, he managed that problem by checking the oil at every stop . We arrived in Greenville late the next evening after taking a lengthy detour to avoid a winter storm.

Our stay there was good – the first time we’ve been back for Christmas with our families since 1996. The kids think it would have been better if I’d left their school books at home.

I knew the trip home would seem long. We left Greenville at 6 a.m. this past Friday. We’d gotten all the suitcases closed somehow, Jon squeezed all the extra stuff in, and we were off right on schedule. Late in the morning, we were zipping through Knoxville, Tennessee at 70 miles per hour, when we suddenly noticed a very harsh and unsettling vibration from the back of the Suburban. Jon immediately maneuvered across four lanes of traffic and into the emergency lane. He stopped briefly, then began to inch forward. We rolled less than ten feet, when the back, passenger-side corner dropped to the ground. In the side mirror, I could see the back wheel had flopped onto the grass. The thought of the accident we had barely avoided just about choked me. We immediately thanked the Lord for safety. I can’t imagine that we could have survived if that wheel had come off while we were on the interstate. I still have visions of what could have happened.

A Chevy dealership was right beside the interstate, so that’s where the Suburban was towed. Even though we could see the dealership from where we were, it still took more than an hour to get there. Of course, we had to wait for the tow truck. But then, no one seemed to know how to get our (large) family from the side of the road to the dealership to wait for the repairs to be done. The dealership offered courtesy transportation, but only had one too-small car available. Jon had to accompany the Suburban, so that left only one adult with seven kids, and we had to be divided up somehow in order to fit into the car the dealership sent for us. I wasn’t eager to send the kids anywhere without one of us, and I definitely wasn’t going to leave four of them waiting beside the road for someone to come back for them, in spite of the fact they were having a great time getting semis to honk at them. They would all cheer, clap, and jump up and down whenever a truck driver blasted his horn. I hope they entertained some bored truck drivers.

A kind lady named Mary came to our rescue. She stopped because she thought she recognized our family. Of course, we weren’t who she thought we were, but she still offered to give half of us a ride, and the other half rode in the dealership’s car. So we all got to where we needed to be together.

Our family always attracts attention. You would almost think our last name was Duggar. Now all we need is a camera crew following us around (and thirteen more children, I suppose). Anyway, one of the dealership employees walked into the waiting room, stopped, stared, counted, then started laughing – almost cheering. He asked, “These all yours?” Then he ran into the customer service area and shouted to the desk lady to “Come out here!” I think everyone in the waiting room was laughing by now. He said to the customer service lady, “I told you there were other big families. Now here’s one that has more kids than I do!” Turns out, he has six children. When he met Jon, he pumped his arm, and said “You da man! You da man!!”

We sat there for more than four hours, but eventually the wheel was repaired. Six of its eight lug nuts had mysteriously broken, but no other damaged was done. Finding the right lug nuts was evidently the hard part, but finally the job was done, all the wheels were checked for safety, and we were on our way again. Now, I was not only gasping when another vehicle came too close for my comfort, and using my “assistant break pedal” when Jon was too close to someone else (I still haven’t gotten over the other four wrecks), I was also jumping every time I felt a little vibration. All that adrenaline has got to be good for something. Maybe it helped burn off some of those Christmas calories.

We made it to Paducah, Kentucky that night, and after a solid night’s sleep, we traveled twenty hours yesterday – all the way home. We arrived, bleary eyed and dizzy, at 3:00 this morning. We fell into bed, thanking the Lord again for safety, and slept until 10:00 this morning. And slept again this afternoon. Now I’m ready to go to bed again, so good night, all.

2010-01-05T15:15:00.004-07:00

I'm finally getting around to doing an update. We've had a very good time here in South Carolina. We had been planning to return home this week, but will need to stay a few more days so Jon can finish up a job he's working on. We're enjoying Colorado-style cold weather here in temperate South Carolina. My kids had been wondering what a warm-ish, rainy Christmas would be like. Instead we're having frigid temperatures, some sleet, and even a little snow, although not enough for a white Christmas. But no one minded. Grandparents win out over snow any day.

We took our Suburban in to be repaired at Jerry Cain's Auto Body in Piedmont, SC on the Monday before Christmas. To our great surprise, Mr. Jerry called us on Wednesday to say the job was done! We didn't even have time to get the replacement car rented. It looks as good as new, and we are very pleased. It even runs better, thanks to a tune-up.

December 26, 2010

Wondering?

2009-12-15T12:09:00.004-07:00

I just wrote a lengthy update, but the computer froze up, and I had to restart. So you're just going to get the abbreviated version now.

A week ago, it was looking like the insurance company was going to under-value our car and total it. We were warned that fleet insurance (the guy who hit me was driving a company car) is typically difficult to deal with, and we should be prepared to get a lawyer.

However, the sub-contracted appraiser assigned to evaluate our car made the other guy's insurance company's adjustor furious by not showing up for appointments he made with us, not communicating with us about it, finally showing up very late, then not sending any information to the insurance company, and not communicating with the insurance company about his supposed repeated computer problems. We found out the last part of this yesterday when Jon finally called the adjustor to learn what the insurance company's decision was. They still had not received any information from the appraiser. The adjustor was very sympathetic and apologetic. We've told everyone from the beginning about our upcoming trip and were assured this would all be settled by then. Now that's impossible. But we are going to drive our dented and scraped, but very functional Suburban to South Carolina and have it repaired there. The insurance company will provide a rental car there and will send the check to our "vacation" address. Although we haven't issued any threats, they aren't ignorant. I don't think they want to be responsible for the pain and suffering of 7 children who would have to miss being with all of their grandparents for Christmas. So now it appears that an appraiser who laid down on the job has made our claim process easier than it might have been.

...and again

2009-12-04T12:08:00.003-07:00

For the fourth time in 5 months, we had another car accident. It was snowing, and I was slowing down at a stop sign when another car came sliding around the corner into the side of our (newly acquired) Suburban. The other driver was very polite and kind - no problems there. His insurance company is one we've never heard of, and our company's adjuster said that the person she talked to there was the rudest person she has ever dealt with in her business. We are hoping this is not a foreshadowing of an insurance battle. We were scheduled to drive this Suburban back to South Carolina on December 17. We'll see what happens with those plans, but we're sure hoping they don't have to be changed. We're also hoping (more than hoping) that insurance doesn't decide to total our car because of the damage. Perfectly maintained, leather upholstered, four-wheel drive, nine-passenger SUVs within our price range are rare, and we don't want to have to start looking again.

I was very bothered by the accident, but then, after all, what's a car accident compared to what the Lord has already shown us He can do? The lessons we've been learning over the past year apply to accidents just as well as they do to cancer.

Thank you

2009-11-29T22:00:00.004-07:00

The Wednesday evening before Thanksgiving, our pastor asked Jon to speak to our church family about our experiences over the past year. If you're interested in hearing what he had to say, click here. When you get to the page of audio files for Tri-City Baptist Church, select the file titled "PM Nov 25 2009 John Bixby Testimony". I did not speak that evening, but what Jon said is an accurate reflection of my heart too. The thanks that Jon extended to our church does not stop there. Many of you have supported us is different ways. We're thankful for all of you.

2009-11-24T10:41:00.003-07:00

Jen did a great job. She trimmed my hair just a little (since there's just a little there), and gave me a lesson in how to man-handle hair like this. It feels nice to have my hair "fixed" again.

I know some of you who read my blog have been through cancer treatment, and I have a question for you. I'm loosing my eyebrows and eyelashes again. They are coming out in significant quantities. Is this normal? Am I just getting back into the cycle of growing and loosing hair?

Gilead has his first tooth! And he's diligently working on his second one (and third, and fourth). I'm having a hard time believing he's old enough to be getting teeth. But no turkey yet. He is eating cereal though and doing so well. He's eating much better than my others did when they first started cereal. He also rolls over from his tummy to his back and grins and giggles a lot. His big brother, John, is the very best at getting him to belly-laugh. John's such a clown, he makes us all belly-laugh.

I hope you all have a wonderful Thanksgiving full of thankfulness.

Here are a few pictures of Gilead's progress over the months.

May 18, 2009

July 2009

August 2009

September 2009

A Big First

2009-11-20T11:56:00.003-07:00

My hair started growing back in September. Now there's enough of it that I need my first hair cut in a very long time. I'm going this afternoon at 2:00! I don't know what I want now or in the future, so I hope miracle-working Jen has some very good ideas.

It's very curly now, and poofy in the wrong places. I have duck-tails around my ears and on the back and top of my head. Kind of like Betty Boop, I guess. But it's fun to have hair, and it still doesn't take too much time. I can't make it do anything besides what it wants to anyway.

It's been a year since my surgery now. I have so much to be grateful for. Everything is still looking good. I'll continue to see the oncologist every few weeks for various tests. My arm continually stiffens up due to the radiation, but I'm exercising regularly, and that should keep it healthy and limber. Some ladies aren't able to do much serious exercising after all the treatment, so I'm thankful I've recovered well. So far, I've had no incidents of lymphedema (painful swelling in the arm due to having lymph nodes removed). Changes in altitude can sometimes cause the onset of lymphedema. We are planning to travel to Greenville, SC for Christmas and that's quite an altitude change. I will be holding my breath.

I'm planning my annual day-after-Thanksgiving shopping trip! I can drive myself all over town! Last year, Teresa (my sister) and I went out for the day, in spite of the fact I had just had a mastectomy. We had a fun, fun day, and I felt pretty well. But it sure will be nice to be feeling normal on such a busy day.

Life Goes On

2009-10-29T11:02:00.002-06:00

I tried posting pictures of Gilead, but did something wrong. I'll try again soon. Meanwhile, we are going on with life as usual. I am homeschooling the kids again, and that's going well. My energy seems to be about normal - I've been surprised how fast I seem to have gotten over all the treatments. My hair is coming back very nicely and getting wavier every day. It's still very, very short, and very, very easy to take care of.

Cara had oral surgery yesterday to have 4 impacted teeth removed from her chin. She's recovering well, but since the teeth were substituting for a significant amount of bone, she can't put her chin in harm's way for several months (that is, no pillow fights, no sports, no wrestling with her siblings or any other kind of rough play). The surgeon said this is the optimal time to recover from this surgery since she's growing so fast. Normally it would take a year to fill in all the missing bone, but at her stage of growth it should take only 4 to 6 months.

Biopsy Results

2009-10-17T20:36:00.004-06:00

The doctor called yesterday evening with the biopsy results, and everything looks normal. We were very relieved to have that news. Normally other steps would be required to confirm that cancer really is not in the enlarged lymph nodes, but because these nodes are located directly above a major blood vessel and because they are relatively small, the next step of biopsies cannot be done. Dr. Schroeder (biopsy doctor) feels that the results are trustworthy, and the only thing to do now is to monitor these areas with regular visits to my oncologist which was in the game plan anyway.

Thanks for all the encouraging notes. There will probaby be more of these ups and downs over the next years, but we've gotten through the first, and I won't bother worrying about the future.

Ultrasound

2009-10-10T11:41:00.004-06:00

Yesterday was the ultrasound on the supsicous lumps around my collarbone. I would have posted earlier, but we got home last night and had a very fun family evening which I didn't want to interupt with lengthy time online. This morning our electricity has gone off twice.

The ultrasound results were inconclusive. Now I realize that a conclusive result would have been bad news. The doctor told me that he would not be concerned about the lumps (after viewing them with ultrasound), but because of my history he wants to do a biopsy. That is scheduled for next Thursday, October 15, at 1:00 p.m.

Thanks so much to all of you who donated to The Race for the Cure. My friends raised over $1000.00! I really appreciate you all donating to this foundation. Some folks have asked about Susan G. Komen's association with Planned Parenthood. I have done some research, and I am posting an exerpt from a letter I wrote to someone else. I hope this answers questions you may have.

I had read some articles concerning Komen's involvement with Planned Parenthood in some areas of the country. Komen's Denver affiliate provided me with some information about that too. From what I understand, Komen gives funds to Planned Parenthood in areas that don't have other breast cancer screening services available. (Evidently, in certain places, Planned Parenthood offers breast health services for women.) Komen claims that their funds are carefully monitered so that they are not used for any purpose other than breast cancer screening. In Denver, however, Komen works exclusively through St. Joseph's Hospital for treatment and screening. St Joseph's Hospital is well known for its stand against abortion. I don't know how Komen operates in other cities, so folks will want to check out the policies of each individual branch.

Correction: In my comments, someone posted a link that I had not seen. The information at this site says that Denver's Susan G. Komen did donate to Planned Parenthood in Colorado, Wyoming, and Utah. I did not know that Denver Komen gave funds for breast cancer diagnosis outside of the Denver area. I'm sorry for posting inaccurate information.

Quick Update

2009-10-02T21:11:00.002-06:00

Just wanted to let you all know that Gilead weighs 16 pounds, 2 ounces! He had an appointment yesterday, and is still doing just great.

I have an appointment for tests next Friday, October 10. Maybe I'll have news after that.

Thanks to all of you who donated to The Race for the Cure. You all donated more than $1000 on my behalf! I know other ladies will be appreciating your generosity.

7 Days 'til the Race for the Cure

2009-09-26T22:26:00.002-06:00

If you've been reading my blog for long, you know how much I appreciate Susan G. Komen for the Cure. This foundation filled such a need in our lives. Denver's Race for the Cure will be on October 4, so this is the last week for fund-raising connected to that event. Many of you have donated to this cause on my behalf and helped me reach my initial fundraising goal. I set a new goal of $1000.00 and that has almost been reach too! If you are interested in donating, click on this link (http://www.komendenver.org/site/TR/Race/General?px=1639263&pg=personal&fr_id=1090) to make a donation.

2009-09-24T20:27:00.003-06:00

I could not find an electronic copy of the 5280 Magazine's article to benefit Susan G. Komen for the Cure. I've scanned a copy here. If you click on the picture of the page with text, it should enlarge so that you can read it. Here's the link to my page on the Susan G. Komen Denver affiliate's website.
http://www.komendenver.org/site/TR/Race/General?px=1639263&pg=personal&fr_id=1090

Monday I went to see the oncologist for a follow-up on the enlarged lymph node I found the week after radiation was finished. It has not gone away, and the oncologist found a second swollen lymph node in the same general area. She is scheduling tests to help determine what is going on. This has been a challenging week, to say the least. I dread starting this whole process over again, and I hope these lymph nodes turn out to be benign. Many times over the last few days I have looked at the stencil a friend put on my bedroom wall - "Be still and know that I am God." That probably sounds kind of ambiguous to some, but our recent experiences have given me opportunities to learn what kind of God I have, and I have every reason to be still and trust Him.

Meet Amy Caldwell Bixby

2009-09-14T18:19:00.002-06:00

Click here (Meet Amy Caldwell Bixby) to see the short version of the interview for 9News. I haven't seen the finished version yet, but hope to get a link up to that later.

Photo by Sandy Puc for 9News

If you're interested in reading my story on Susan G. Komen's Race for the Cure site and donating to this foundation that has given so much to us, click here http://www.komendenver.org/site/TR/Race/General?px=1639263&pg=personal&fr_id=1090

The Race for the Cure

2009-09-02T22:12:00.008-06:00

I wrote before about how Susan G. Komen for the Cure has been an amazing financial help. Immediately upon my diagnosis last October, this foundation offered me a grant that covered all of my medical costs. They have also provided us with an additional grant to help offset other expenses due to my cancer. We will always be grateful for Komen's generosity and work on my behalf.

Gilead and I have become part of the advertising campaign to raise funds for breast cancer research, diagnosis and treatment through Denver's Race for the Cure that will be held on Sunday, October 4, 2009. Although I will not be running, I have registered and am asking all of you to consider donating funds to the Denver Affiliate of Susan G. Komen for the Cure. Click on the link to my race page (http://www.komendenver.org/site/TR/Race/General?px=1639263&pg=personal&fr_id=1090) if you're interested in giving. Donations are tax-deductible and greatly appreciated by folks like me.

This is one of the pictures taken for Komen's fundraising.

Ellen Jaskol holds the rights to this picture.

It's Not Over

2009-09-02T21:35:00.004-06:00

When I finished radiation almost two weeks ago, I had no idea that one of the most uncomfortable stretches of treatment was still ahead. My skin was red from the radiation, and my arm felt a little tight, but I wasn't experiencing any pain. The radiation oncologist commented that my skin had held up remarkably well during this process, but warned that it would get worse for the next ten days or so before it began getting better.

I'm glad she warned me or I would have been very worried. By the following Tuesday my skin was blistering, peeling, and very painful. The pain spread to my muscles and deep inside the tissues. I've taken more Advil over the past ten days than I did after either the mastectomy or the c-section. Of course, I haven't been in bed recovering from the radiation like I was after the surgeries, and I'm sure my constant activity has only aggravated the radiated area. Just yesterday, I finally began to experience some relief.

Less than a week after the radiation was finished, I found another enlarged lymph node just below my collar bone. The oncologist had me come in right away, but she didn't have any definite answers. She hopes I am just reacting to the radiation, but can't promise that's the case. My next appointment is near the end of September, and we'll be making some decisions about more biopsies and tests.

I've been struggling with fear that the cancer is making a come-back already. But it's been strengthening to constantly remind myself that life on earth is temporary even in the best of health, and that God has already proven Himself loving and trustworthy.

Three Times...

2009-08-24T16:21:00.002-06:00

...is not a charm. Yes, I did it again, and this time it was my fault. Thurday, I was driving the rental car home from the hospital, and as I was turning into my very own cul de sac, I got distracted and began watching what was going on in our yard. I hit a Cadillac Deville that was coming the other way. Thankfully the elderly gentleman who was driving maneuvered almost completely out of my way, and we got away with just scratched paint on each of our cars. But I sure felt stupid. He was pretty mad at first (and I guess I don't blame him - I was mad at myself), but when I started crying, he calmed right down and apologized repeatedly for not being quick enough to get out of my way. Now that's backwards.

We had a damage waiver on our rental vehicle, so the insurance stuff, again, is going smoothly. If I mail in my fine, it will be reduced by quite a bit and the points on my license will be reduced from three to one. There are so many traffic violations in a city this size, they pay you not to come to court. Where I grew up, you could only get your fine reduce if you showed up for your court case.

The next day was my last radiation treatment! We loaded up the whole family, and while I held my breath and used the assistant brake pedal on my side way too much, we drove down I-25 one last time (at least the last time for about a month). The nuns have a graduation ceremony for each patient on the last day of treatment. I'll try to post pictures later. They provided me with a cap and gown and had me march around the waiting room while Sister Marie played Pomp and Circumstance on her tape player. I even got a diploma. Then Sister Marie told me I had better not ever come back, except for check-ups. I wonder if she has a fine for violating that rule? They did give me one last rule. Check-up appointments must be made for the morning hours when they will be in the waiting room.

I move on to five years of hormone therapy now. I'll be taking a daily Tamoxifen pill. That will reduce my chances of a reoccurance another few percentage points. After the surgery, my reoccurance chance was about 70%. Now, with the radiation, chemo and hormone therapy, my reoccurance risk is about 40% over the next ten years, so it's come down quite a bit, although its still high. We will certainly appreciate your thoughts and prayers.

I'll continue to post - probably about as often as I have been. Our lives will be full of happenings. It couldn't be otherwise with seven growing children and at least one accident prone adult. I plan to post a series of pictures of Gilead from his birth till now so you all can enjoy his progress with us.

Again

2009-08-07T23:11:00.005-06:00

We were almost home from Dr. Roland’s funeral when a lady ran a red light in front of us, and we slammed into her SUV with our much larger Suburban. I remember thinking, right before we hit her, that we would kill whoever was sitting on that side of her car. Thankfully, no one was. Although the accident happened in a busy intersection, and her car spun quite wildly, no other cars were involved, and no one was injured seriously. Five of our family were in our car, but no one even got a bruise. In fact, Gilead slept through the whole thing. But our Suburban was totaled, so we’re in the market for another vehicle. Everything with the insurance companies is going smoothly since there was no question about whose fault the accident was. My kids are still enjoying telling how scared they were and exaggerating the details. Gilead must be intended for a long, healthy life. What other 12-week-old has been in two potentially deadly car accidents, survived chemotherapy, and been through all the other things his little baby self has already endured?

The other car looked much worse than ours...lots of broken glass and crunched metal

2009-08-07T23:09:00.000-06:00

We went to Dr. Roland’s funeral on Wednesday. I’ve never really thought of funerals as encouraging before, but this one was. It was held at Red Rocks Baptist Church (formerly South Sheridan Baptist) where the Rolands have been members for many years. The church was completely full of hundreds of people who have been touched by Dr. Roland’s life. Most of his nine children spoke briefly, and what they said about their father challenged us to leave such a love for God with our children also. One thing his children remember him saying was this: “Only two things in life will last forever – people’s souls and God’s Word, so invest in those.”

Surprise

2009-08-07T22:20:00.007-06:00

When my radiation treatment was finished on Tuesday, and I went back to the waiting room to hang up my name tag and say good bye to Sister Owen and Sister Marie, I had quite a surprise. Jon and all of the children had sneaked in and were waiting with a cake and some gifts to celebrate our 14th wedding anniversary. Everyone in the waiting room sang “Happy Anniversary” to us, and the sisters sang us a lengthy medley of songs asking God’s blessing. It was a special treat and such a sweet surprise. All of us who have radiation around the same time each day get to know one another’s families, so I enjoyed sharing our little celebration with our waiting-room friends.

I learned that at least three of the children had kept this a complete secret for several days. Not even the slightest hint of what was coming. I was one impressed mommy.

Results

2009-07-31T20:23:00.002-06:00

Dr. Cook gave us the PET scan results today. The spots that were in question turned out not to be cancer. The scan showed no areas of unusual activity. Wonderful news! I think I'll be having scans every 3 months for awhile.

I would have posted earlier this afternoon, but I was feeling sick. The radiation effects seem to accumulate over the week. I should be feeling fine very quickly - in time to get back to business on Monday.

Our family doctor, Dr. Roland, passed away yesterday morning. His funeral will be on Wednesday. I'm sure his family would appreciate your prayers. Mrs. Roland posted a moving letter to all their friends on Facebook at the group Expressions of Love for Dr. Ralph Roland.

How Do You Solve a Problem like Maria?

2009-07-28T22:09:00.003-06:00

Someone I told about the nuns in the radiation waiting room sang this little line from The Sound of Music. I was officially initiated today in the waiting room. Sister Marie sat me down and told me she was going to tell me the rules and that if I ever break any of them, I will be required to make a monetary donation to her 18-wheel truck bank. (No piggy bank for Sister Marie.)

Rule #1 - Always, always wear my name tag in the waiting room and make sure Jon wears his too. Failure to do so carries a fine of at least a nickle per violator.

Rule #2 - Never, never say "My number's up" when my number pops up on the electronic display to show me it's my turn for radiation. Instead, I must say, "Bingo!" - "like you've just won $16,000." (Sister Marie's words.) Failure to show proper enthusiasm also carries a fine of at least a nickle.

Rule #3 - Never, never, NEVER sit in Sister Marie's chair. Violation requires a donation of folded green stuff to the bank. Nickles are not accepted in such cases. Sister Owen told me I could sit in her chair anytime I wanted. Sister Marie said Sister Owen doesn't have any backbone.

Rule #4 - Sister Marie may deliver corporal punishment to any misbehaving patient or patient's family member at her discretion. "You can sue me if you want." She keeps a giant fly swatter handy - her "people swatter" - and I hear that she does use it.

2009-07-27T18:51:00.006-06:00

The PET scan is done, and we will get the results as early as Thursday from my radiation oncologist. Since the medical oncologist ordered the scan, protocol may require that she be the one who gives me the results, and I'll see her on Friday.

Jon got up very early to fix me an omelet and bacon, so I started out with a good breakfast. The rest of the time before the scan went well without my being uncomfortably hungry. At the imaging office I found out why I had to fast. Cancer cells demand lots of sugar to multiply as fast as they do, so the goal was to get any remaining cancer cells good and hungry so they would quickly consume the radioactive sugar that was injected into me. That also explains why I could not eat carbs. The scan then allows the docs to see if there are areas where the sugar is being required at unusual levels.

The office provided a bag of snacks and bottled water so I didn't have to make an emergency stop for fries and a milkshake. Besides, after learning what I did about sugar today, I think I'll stay away from that. (I was trying to anyway.) I'd been told before that sugar encourages cancer, but until today no one explained why. I've also been told that cancer is encouraged by avocados, boxed food, tap water, bottled water, cell phones, steak, cheese, antioxidant supplements, radiation, chemotherapy, and yams.

PET Scan

2009-07-26T09:29:00.004-06:00

So many of you have asked about the PET scan that I can't believe I forgot to post when it will be! It will be tomorrow (Monday) at 1:00 p.m. This is terrible timing!!! I am not allowed to eat until after the scan is done, unless I get up at the crack of dawn to eat a little protein (but no carbs - doctor's orders). And I was told to allow three whole hours for the process. So at 4:00, I'll drag myself out of the office on hands and knees and crawl to the nearest joint to get some french fries and a milk shake. I know I won't care about healthy food at that point, and I'll surely be needing lots of carbs. Next time I have a PET scan, I'll make sure it's scheduled for early in the morning.

Can you tell I'm a wimp about skipping meals?

We will get the results of the scan on Friday when I have an appointment with the medical oncologist (the doctor that handled the chemotherapy). Thursday I'll see the radiation oncologist again and get an update on how the radiation is going.

Radiation and So On

2009-07-24T16:29:00.006-06:00

My fifth radiation treatment was today. It's an unremarkable process from my perspective, although I know the technology that goes into it is way beyond my comprehension. It's so quiet and fast, it's hard to believe how much is actually happening.

I now have three tattoos so that I can be lined up in exactly the same position every day. The tattooed dots are aligned along laser lines to make sure the radiation is precise. I receive radiation in three places: my skin, chest wall, and axilla (under my arm where the lymph nodes used to be). I lie on a table with a huge machine, like a hunching, one-eyed critter, directly over me. It swivels around the table so the radiation can be delivered perfectly. I receive 5 doses of radiation, totaling about 52 seconds. On most days, I am in and out of the office in less than 20 minutes. Two elderly nuns, Sister Marie and Sister Owen (they really are sisters), keep the patients company in the waiting room, and they are a pleasure. They are upbeat, cheerful, and genuine. One is gentle and quiet, the other is loud and sassy. They have really made a name for themselves because I've heard about these two ladies for months now. They make that waiting room a comical, pleasant place. I think many of the radiation patients make their appointments for the mornings, just so they can be in the waiting room while Sister Marie and Sister Owen are there. They move on to other responsibilities at noon.

Yesterday was the interview with 9News. Kim Christiansen interviewed me, and she was so comfortable to talk too. She immediately put me at ease and made the whole interview seem like a simple conversation. I think it went well. Gilead even gave a few gassy smiles at just the right moments. 25 people were interviewed in preparation for Breast Cancer Awareness Month (October) and Susan G. Komen's Race for the Cure. The interviews will be aired during September and October. I will be sent a link to 9News.com so I can share them with folks who aren't part of 9News's market. I don't know if I can figure out how to post it though.

Just kidding.

Funnies

2009-07-23T22:19:00.006-06:00

I'll update later about the radiation and 9News interview. For now, I just wanted to share my all-time favorite comic. Those of you who know me know how much I love going to garage sales and thrift stores. I think I would still love it if we were ever to become millionaires. Someday maybe I'll write a book about the incredible things I've found by shopping that way. (Like the 39 pieces of vintage sterling - not plate - silverware for $3.)

Day Gone Awry

2009-07-12T10:52:00.003-06:00

I was hoping to get several projects done this weekend since it's the last chance before radiation begins. But Gilead was obviously developing a cold by Thursday evening and after being up much of the night with him, we decided a visit to the doctor's was necessary. Friday morning the doctor examined him and sent us to the hospital since he was preemie and is still pretty little. After several hours of monitoring him, the doctors at Children's Hospital decided his lungs are strong enough now to handle this cold on his own without any medication or extra support. They sent us home late in the afternoon with instructions about what to watch for, but also with a lot of encouragement that Gilead has developed very well over the past few weeks.

As I was driving home on I-25, I was rear ended by another (thankfully smaller) SUV. We were driving about 60 mph in heavy traffic - obviously he was going a little faster - so the accident could have been deadly. I was very rattled, but there was only minor damage to both of our cars, and both of us drivers were well aware of what we had just been spared. He was very polite and honest. It looks like all the insurance stuff will go pretty smoothly.

So at the end of the day, although none the planned projects had been completed and I was tired, we certainly had some blessings to count. Gilead's lungs are strong, our car still runs fine, and Gilead and I are alive and well.

Pictures

2009-07-09T20:11:00.002-06:00

What is Heaven Like? by Beverly Lewis

2009-07-05T10:03:00.006-06:00

In January, two friends passed away from some type of cancer, and we found out about a handful of others who had just been diagnosed. I felt overwhelmed and discouraged. Like I said in a few days ago, I felt like cancer was dropping people around me like flies. Jon knew I was feeling down, and one evening he gave me the book What Is Heaven Like? by Beverly Lewis and illustrated by Pamela Querin. A gift like this to someone facing cancer might seem morbid to some of you since talking about heaven assumes death. But since death is a common human experience, we might as well consider the after-life. There is so little information - what reliable source do we have? You all know my perspective already. The Bible has been my source of strength, and its reliability has been proven to me.

This is a children's picture book, but its simple thoughts have been wonderful. A young boy wonders about where his grandfather has gone. He asks various people in his life, "What's heaven like?" Each page is skillfully illustrated and holds a different person's answer to the boy's question. The part I like best is this: the thoughts about heaven are supported by a verse of Scripture printed on the bottom of every page. Having turned to the Bible for support, this has become the most beautiful part of this sweet book to me.

Chemo #9

2009-07-05T09:37:00.002-06:00

My last chemo...believe it or not I've had mixed feelings. I won't miss feeling bad (this treatment has been the worst), but now I begin to wonder, "What if I have to do this all over again?" My emotions have felt kind of pregnant - that is, my feelings are all topsy-turvy, the way the tend to be when I'm pregnant (familiar territory). Radiation planning is on July 13, and the actual treatments will begin sometime that week. I hope to be finished with that by the end of August. Sometime soon I'll start taking Tamoxifen, a pill form of chemo that suppresses estrogen production since my type of cancer was feeding off of estrogen. I'll have to take that for 5 years.

I can't believe how much has changed since last October. My family continues to grow up even though I sometimes feel like my life has been placed on hold. I still can't believe we have another precious baby. A year ago, I adamantly stated that I didn't want any more children. I'm so glad we don't always get what we want. Cara walked into the youth group with feet nearly the same size as mine. John is standing on the edge of adolescence with feet that are bigger than mine. (For those of you who have never seen my feet, that's not small.) I guess one of the things that has changed the most around here has been shoes. We feel like we're buying a new pair every week. By the time I'm finished with the six-year treatment routine for this cancer, we'll have a daughter just a few months from adulthood. Amazing.

Chemo #8

2009-06-25T18:52:00.003-06:00

Just one more chemo treatment to go! This past round was the most uncomfortable so far, but I'm feeling much better now. Some of my fingernails are feeling a little loose - losing them is a side effect of the Taxol - but since I only have one treatment left, maybe that won't get too bad. My oncologist is scheduling a PET scan sometime in the next 3 weeks. This will be a high resolution scan that will take a closer look at the spots on my liver and bones that the CT scan in February showed. I am nervous about this scan - its findings could change many things. If those unclassified spots turn out to be cancer, it will be considered terminal.

I have not shared details about how the financial end of my treatments is going. Jon started his own residential construction business in 2007, and after a few months of very tight squeezing, we had to drop our health insurance. Our goal was to pick it back up in a year (December 2008), when we hoped the business would be bringing in more income. Dropping our insurance was a very hard decision to make, but we both came to the conclusion that, ultimately, God is the one who provides for us. Either he provides through insurance, or he provides in some other way when the need arises. We were on track to meet that goal when my cancer was discovered in October 2008.

My official diagnosis was only about three hours old when I was approved to receive a treatment grant from the Susan G. Komen Foundation. We knew next to nothing about this foundation, but the supervising nurse at the mammogram clinic knew the who, how, and where to make the whole process so easy that we hardly knew what was going on. There wasn't even time to get worried about how all this treatment was going to be paid for!

All that to say this: We were absolutely amazed at how our Lord worked out details we didn't comprehend, and we feel very indebted to the Susan G. Komen Foundation. When their public relations representative asked if I would be willing to be interviewed by a few media outlets to help with fund raising, I was happy to help in any way I could. Last week I was interviewed for Denver's 5280 magazine, and yesterday a photographer came to our home to get pictures of us all. Gilead and I have another photo "thing" next week, and in July, Channel 9 News will be doing an interview. I don't want to be intimidated about sharing my faith in all of this, and I would appreciate the prayers of those of you who share my faith that I will be able to speak about what has been my most sustaining anchor through these months.

I don't have any updates about Dr. Roland. If you know his family (even if you don't) and would like to leave an encouraging note for them, you can do that on Facebook. Dr. Roland's son-in-law, Will Gaulkin, set up a group - Expressions of Love for Dr. Ralph Roland - where folks can leave notes that the family will print off and read to him.

Sometimes I look around me and feel like cancer is dropping people I know like flies. It's not very encouraging. For that reason, I plan to do another book review next. For those of us who have chosen to believe what the Bible teaches, there is incredible hope and promise in any circumstance, no matter how awful. My next review will be of another children's book. I guess all-things-children is my life arena right now, and there sure are a lot of great resources in this arena.

2009-06-16T20:29:00.004-06:00

Those of you who have been reading my blog from the beginning may remember that I mentioned our family doctor, Dr. Roland. He was diagnosed with cancer near the end of last year. His family has just been called to be with him; he's not expected to live very long.

We have appreciated Dr. Roland and his practice so much. He is truly a unique doctor. His advice has definitely not been limited to the medical field. He has not been afraid to incorporate his strong faith into his practice. When we were told that I could not maintain my pregnancy and also have treatments for the cancer, Dr. Roland was one of the first people from whom we sought advice. He and his family have been a blessing to us in so many ways. Our hearts are breaking for them.

Please pray for the Roland family.

Chemo #7

2009-06-15T16:55:00.002-06:00

I've waited too long to update again. We've stayed pretty busy over the last couple of weeks. This round of chemo seemed to go a little better than the first. Some symptoms were worse, but overall, I felt better. Thursday the cycle starts over again.

I've lost all my hair again, and this time it hurt. I don't know what made the difference from the first time I lost it, but I was actually glad once it was all gone this time. I felt like a cat whose fur was always being rubbed the wrong way.

Gilead is starting to put on some fat, and he should be with the whopping amount he eats every day! We're glad to see his appetite so healthy. Aunt Teresa has thoroughly been enjoying helping out with him. She has become an expert burper. (Hee hee - won't she thank me when she reads that?)

Okay...I just tried to post some pictures, but something's going wrong. I'll try to get some posted later.

2009-06-03T20:17:00.003-06:00

Several of you have asked how Jon is doing. He finally seems to be getting better, although he still sounds bad and still has quite a cough. I'm very thankful the rest of us have avoided this bug. The crazy swings in the weather here probably aren't helping him much. We actually used our wood stove today. Glad we still had dry wood in the box left over from one of the other spring storms.

My sister is coming out again. She'll be here on Saturday. I think she's planning to donate her abundant hair to me this time. Mine is coming out again. (This is our running joke for those of you who don't know Teresa. She has grown her hair since November, but when I was first diagnosed, she had slightly longer hair than I have right now.) The kids are excited, and I'm thankful she'll be here for a couple of weeks.

Gilead

2009-05-29T22:36:00.003-06:00

Gilead's doctor's appointment was today, and it went very well. Gilead's growth and development continues to be amazing. I don't think I'm just a proud mama - the doctors seem to be surprised too. He weighs 5 pounds, 5 ounces now. He's surpassed his birth weight by the time they expected him just to begin re-gaining weight from his low of 4 pounds 9 ounces. The doctor commented that his muscle strength was especially good even for a term baby.

We have been blessed with the "real deal" (breast milk). There is a system here in Colorado through which breast milk can be donated to babies who can't get it from their moms, and we considered using that. Another mom we met in the NICU told us she would like to give us her large supply of frozen milk, if we would be willing to take it. After a nurse in the NICU privately encouraged me to bypass the donor milk bank and the pasteurization process, and after private conversation with the other mom, we felt more than blessed to accept her offer. Gilead takes it so much better than the high-calorie formula he had been prescribed, and he doesn't spit it up (the formula came back up a lot). I think this is one reason his growth has surpassed expectations.

I keep hearing of more and more people, truly all over the world, who have prayed for us. People on every continent (except Antarctica of course) have emailed us with encouragement. Thanks to each one of you. God has more than answered our prayers. Our faith has been reinforced in a huge way. And without our faith in God, I don't know what we would have done in the past months.

My next chemo is on Friday. I've gotten over the side effects of the last one, and I hope they won't be accumulative. It was definitely more unpleasant than the other chemo I had.

Flu

2009-05-25T19:18:00.002-06:00

Jon has been sick since my treatment on Thursday. At first we assumed it was sympathy sickness - he has a habit of feeling sick on my behalf, and has been very faithful about it with each round of chemo so far. But he just got worse as the weekend went on, and today he spent the day in bed running a fever and feeling rotten. This looks like the classic flu to me - fever, aches, congestion, etc. I want him to be feeling miraculously better by tomorrow - it's his birthday. I would also appreciate prayer for Gilead and for me since neither of us is supposed to be super resistant to bugs right now.

Yesterday was an uncomfortable day for me. The shot that follows the Taxol hit me pretty hard, but I did find that being up and about didn't make me feel any worse. It helped to distract me. Friends came over for a short visit after church, and we had a great time. Today I've felt much better. I keep having the sensation of a spinal block in my back, but that's been the worst of it. (That feeling is still pretty fresh in my memory.)

Chemo #6 - Back to the Grind

2009-05-22T22:12:00.002-06:00

Yesterday was my first treatment with Taxol. It went well, I think. One of the pre-treatments is a pretty heavy dose of Benadryl, and it pretty much knocked me out. I slept during almost the whole treatment. The potential side effects of Taxol are numerous, but the most common ones are flu-like symptoms.

Jon took a little lesson in how to give me my follow-up shot, so he gave that to me today. This shot is to boost white blood cell production so that I can have treatments every two weeks instead of every three. I'll be glad to get done sooner if I can sustain the compressed treatments. The shot has it's own set of side effects, which also include flu-like symptoms. I'm doing pretty well with that so far too. I am a little sore, and my stomach has been a little edgy, but I've been surprised at how well I feel.

Gilead continues to do very well. He's eating more and still sleeping well. He woke up just enough to tell my parents goodbye this evening. I was sad to see them go, and very glad that they were able to be here for the last two weeks. They've been such a help.

What's In a Name

2009-05-20T19:31:00.002-06:00

Jon said in an earlier post that I would explain Gilead's name. We truly didn't settle on a name until hours before he was born. We had talked about many, many different names (remember Bruce Lansky's Mother of all Baby Name Books?). We chose Gilead because of its meaning (monument of testimony - what better testimony to God's love and care for us than this little boy) and also because of the way it is referred to in the Bible. A lot of bad things happened in the land of Gilead, but there are also passages in which God makes it clear that the area called Gilead has a very special place in his heart. I liked it because it's not common and no one else in our large extended families has used it yet. I also love the way it sounds.

Victor seemed like an obvious choice for a middle name. We settled on that part weeks ago. So now it's all official.

I have no way to respond to individual comments on my posts, but I want to let you all know how much it means to know that many, many of you have been thinking about us.

Home Again, Home Again, Jiggity Jig

2009-05-18T17:05:00.005-06:00

Quick update to let everyone know Gilead is home! He was released yesterday a little after noon. The doctors and nurses commented that they were surprised that he was able to go home so soon. I'm very thankful that we won't need to juggle the NICU and chemotherapy. The kids love him, and everyone is so thrilled to have another baby in our house.

Going Well

2009-05-15T13:54:00.003-06:00

Gilead is continuing to do well. We bring our car seat into the NICU tonight so they can do a required test to make sure that sitting in the seat won't interfere with his breathing. He'll be in the seat for nearly 2 hours for the test. Tomorrow he has some other procedures done, and if those don't knock him back a few steps, the doctor said he may be able to go home on Sunday or Monday. There are still plenty of little details that could delay that, but it's good to have a tentative home coming date.

My chemo resumes on Thursday. I'm glad Gilead will probably be home by then.

From St. Joe's

2009-05-13T18:31:00.003-06:00

I'm officially discharged, but still at the hospital waiting feed Gilead for my last time today. He is getting phototherapy for jaundice right now, and the doctor hopes he will be doing well enough to turn off the lights tomorrow. He just ate 40 ml - 5 ml more than he is required to eat. That's the second feeding in a row he's eaten what he's required to, so the IV tube with supplemental "stuff" was removed! Some of you have had babies in the NICU, so you know how much every milliliter counts and what a joy it is each time another cord is taken off. We get so tangled in those things every time we take him out of his little crib.

Your comments have been very special. I've been amazed at how many people are caring and praying for us. Thank you, thank you, thank you.

Progressing

2009-05-13T09:08:00.001-06:00

What a beautiful day!
Your prayers are truly being answered and we are incredibly privileged to experience and watch first hand the gracious gifts of our Father.
Yesterday, Gilead demonstrated a voracious appetite and already knows when he is working for nothing. He wakes up hungry on time (I see the need for a raise coming). He kept all of his food down and voided properly – that tremendously helps the bilirubin counts. So far he is not under the light. They increased his feeding amounts in the night and plan to triple them from yesterday’s amounts today. If he does well with that the IV will come off sometime today, and then they will want to see him regain his birth weight. We couldn’t be more pleased with his progress.
Amy will be discharged sometime today – that will at least mean that she gets to spend nights at home, but will spend the day at St. Joe’s trying to nurse and encourage Gilead through his growth.
We did find a computer in the family room at the hospital so Amy got to catch up on your notes and comments yesterday, what a blessing! I expect that she will probably post a note with her perspective and the progress of the day a little later.
The changes ate coming so quickly (as always in these first few days) that I ought to get a new picture on here – maybe after church tonight???

More miracles

2009-05-12T08:35:00.002-06:00

Good morning friends,
You really make the start of my day special. I sit here and read your kind notes and expressions and then cry my way through the pictures again and marvel with the question - why has God been so good to me?
Just a quick update. Gilead spent fewer than 24 hours with breathing help. He is already breathing just fine on his own and the vitals are great! He has also figured out the sucking thing very quickly. The question that remains is if there will be the strength, and coordination once Amy's milk comes in to suck, swallow, and breathe at the same time. Another common issue is the ability to keep food down. Right now he is still on an IV with glucose.
Another minor concern is that the bilirubin counts are going up - that would indicate some jaundice and might need a little time under the "bright light"unless they stabilize or better yet go back down. We should know that by today.
Amy is doing great - up and around, of course there is some of the post-op discomfort, but so far she has handled that without narcotics, just the Motrin.
It is a great blessing to have my parents-in-law here, so I can spend the day w/ Amy, then have them bring the kids by for a visit before we switch. we enjoyed our time together yesterday.
Amy probably could have come home last night or at least by this morning, but they are keeping her as long as possible to make being close to Gilead easier. I am also sure that she is resting more there. She has slept very well at night - probably better than me... but I am not the one recovering so good for her.

See you again soon,
Jon

Here I am

2009-05-10T22:33:00.000-06:00

Here he is

2009-05-10T22:09:00.003-06:00

All right, I know many of you are praying and anxiously awaiting this announcement. Thank you so much for being patient with me. This has been a wonderful day so full of little exciting things and miracles - some of them not so little. Here are the vital stats. Gilead Victor arrived at 9:06 AM MDT. He had a healthy voice - why can't we get rid of that genetic trait? Amy was a little disappointed that he was so big - she was looking forward to finally having a baby that might fit newborn socks. He was 18.25 inches long and weighed in at 5 lbs. 2 oz., that was an exciting answer to many prayers. His feet are 3" long and he has the typical long fingers of our brood.

The blood tests were great and he seems to be doing well on the blow by air - all the vital signs are rapidly adjusting toward normal ranges. The biggest hurdle at this point seems to be developing the ability to eat (suck on a bottle) for himself. Late this evening however he seemed to respond to stimulation and try with the pacifier so that was cause to rejoice.

Amy is amazing us all and has already been out of bed, has progressed through liquids to some solid food, and of course is dying to be down in NICU w/ her little treasure. I will let her explain the name and tell her side before too long.

The siblings are doing well and all enjoyed getting to meet the new brother - each in their own way and with their own unique responses. That is fun to watch.

Me? I am overwhelmed by God's love and care for us, by you and your prayers and love, by all the little miracles and joys of the day (and at the prospect of trying to get pictures onto this thing).

There are the basics - now for the pictures???

Jon

On Our Way

2009-05-10T05:54:00.002-06:00

We're just about to head out the door. Last night was restful, and we're looking forward to meeting our little boy. He does have a name now. Jon will fill you all in later.

We've received so many well-wishes from so many people - high school friends, college friends, church friends, family on several continents, people we've never met but who've gotten in touch with us through this situation. Thank you to each one. Your thoughts mean a lot to me and Jon.

Jon says maybe he'll post later today. He can be ornery like that.

Big Boy

2009-05-06T17:56:00.002-06:00

A quick note before we head off to church this evening. I had visits with both OBs today. The final ultrasound estimated the baby's weight at 4 pounds, 14 ounces. The estimate is based on the measurements of his head, abdomen, and limbs, so it's supposed to be pretty close. He may be 5 pounds after all!

Countdown

2009-05-04T09:21:00.002-06:00

Just a few days to go before our little (still unnamed) boy arrives. We've been down to the wire with names before. We'll have picked one by Sunday.

I have already had my steroid shots. The OBs decided to do them a week early to give them more time to work. Now I know why baseball players take those things. I felt so energetic after the first shot, I just kept going and going. I couldn't sleep that night, but I felt good. I ended up listening to Jim Berg's Quieting a Noisy Soul on my iPod for several hours during the night and finally went to sleep around 5 a.m. I was tired the next day, but had another shot, and my energy picked back up again. Over the next two days, I cleaned some of our carpets, took Cara shopping for her 12th birthday, fussed at the family for making the house a mess, stayed up til 2:00 a.m., took Nathan out for his 9th birthday, and made lots of plans for this week. Yesterday, however, was different. I was very touchy, very on-edge. One of my friends at church asked me if I had begun having the side effects of steroids wearing off yet. So I guess the answer to that would be "yes". I wasn't aware of the varying side effects of steroids, but now I know a little about them first hand, and I'm glad that part is done.

I've been complaining to Jon that my brain isn't working just right. I've been frustrated at being so ridiculously forgetful. But I really outdid myself last week. I had to call the OB's office for the phone number of another doctor. The nurse gave me the number, I wrote it down, and called right away. The line was busy, so I called back a few minutes later. It was still busy. I thought it was really strange, after three of four tries, that the phone in a doctor's office would stay busy for so long - surely they must have more than one line. I was dialing the number again when I suddenly realized that the nurse had given me my own phone number, and I hadn't even realized it. I was calling myself. It's a good thing we don't have call waiting.

Baby Plans

2009-04-18T12:16:00.003-06:00

I've definitely been on vacation. No updates for more than three weeks. I'm feeling well since I haven't had any chemo for quite a while. I've been cleaning, organizing, giving the kids their achievement tests, doing taxes, even hit a garage sale and got a few items listed on eBay. I haven't taken a nap more than twice over the past three weeks.

Late last week we had another visit with the OB, and we were able to meet the neonatologist and tour the Neonatal Intensive Care Unit. I will be having steroid shots on May 7th and 8th and then, because of the OB's schedule and because of the schedule they try to observe after steroid shots, our little boy will be delivered on May 10 - Mother's Day. I didn't think they scheduled c-sections for the weekend, but it's a very special day to have this little guy be born.

Our visit with the neonatologist went really well. He was a gentle, grandfatherly man whose own son was born at 34 weeks. The NICU encourages a parent to be with the baby for 22 hours each day, fathers are encouraged to hold their babies, children are allowed to visit ("just don't bring the whole tribe at once" the neonatologist said), and grandparents are allowed to visit as much as they want. We enjoyed our tour immensely. Seeing the other little bitty babies was fun for me. Most people don't get to plan for a premature birth, but I'm glad we've been give a chance to prepare. I'm about as ready as possible, I think. We were told that the baby will be in the NICU for at least a week (best case scenario - no complications, very good growth). Any complications or concerns will extend his stay. I've spent a week in the NICU before, but the circumstances will be very different this time. I'm glad my parents have been able to work out the details to change their tickets and work arrangements. They will be here for two weeks to help.

The oncologist decided to resume chemo two weeks after the c-section instead of the normal four weeks. She's concerned because the longer the delay between treatments, the less effective they tend to be. The good thing is this - the sooner I begin again, the sooner I will be done. Based on the schedule I have right now, I'll be done with the chemo and radiation treatments about the end of August.

Baby Update

2009-04-01T23:19:00.002-06:00

Monday was the next-to-the-last visit with the high-risk OB. The ultrasound still showed a healthy and growing little boy, although he has lost all of his size advantage. He is now slightly smaller than average. That was expected because of the chemo, but I was disappointed to know that it actually happened. The doctors had hopes that he might actually be near 5 pounds at 34 weeks, but that looks unlikely now. His birth is still tentatively scheduled for May 11.

Next week we meet with the neonatologist and tour the neonatal intensive care unit. I'm looking forward to having my list of questions answered. If you could look at my list, you'd never guess I've already had six children. There are so many details about this situation that are new to me that I almost feel like an inexperienced mom again. And I'll probably act like one too.

We Got It

2009-03-27T13:33:00.002-06:00

Nathan came home from school on Wednesday not feeling well. Sore throat, fever, nausea... You moms know what those symptoms usually mean. We were able to get into an office that evening for a strep test, and it was positive. I'm glad I've had enough experience with strep to recognize it quickly. The oncologist put our whole family on antibiotics. So far we're doing well. I'll be doing a general disinfecting of the house. We have had two or three consecutive rounds of strep during the last two spring seasons, but sure hope to avoid anymore of it this year.

2009-03-22T09:34:00.002-06:00

Yesterday, the ladies from my church gave me a baby shower. It was fun and a blessing. I mentioned way back at the beginning of the blog that we got rid of all our baby stuff three years ago. But now we're just about set again. After having six kids, I have become a minimalist. I guess I've spent more time thinking about what we don't need this time around than about what we do. I think we're just about ready for the little guy to get here. May 11 is seven weeks from tomorrow. It's nice to have a fairly solid time frame this time. With the others, by the time week 42 approached, I began to wonder if I was really pregnant or if this was all just a joke.

I've been told I'll probably have a pretty good crop of hair coming back by the time the baby comes. But it will all come out again when chemo resumes. Someone commented yesterday that when her sister had cancer, she learned not to complain about having to fix her hair, because at least she had hair to fix. Just for the record, there is something very nice about not having to fix my hair. I only wear a wig occasionally because it takes longer to fix than I like, and it messes up easily. But I am looking forward to having the real thing again.

Chemo #5

2009-03-14T17:38:00.002-06:00

The last treatment for a couple of months is done! Just knowing chemo is done for awhile makes me feel pretty good. It's gone so much better than it could have, but I'm still glad to have a break. Chemo will probably resume in June. Meanwhile, we just wait for the baby to reach 34 weeks. The delivery is penciled in for May 11. About a month before that date, it will be confirmed with the operating room and written in stone. I will be having a c-section. No more doctor's appointments are scheduled for three whole weeks.

The weather has been beautiful this weekend, and I'm getting the garage sale itch something terrible. I hope not to give that up this summer.

2009-03-04T20:15:00.000-07:00

Today, after I had been out of bed for about an hour, I began having a hard time breathing. I felt exhausted and nauseated. These are all symptoms of the anemia I’m fighting. I was planning to drive myself to the OB checkup today. I kept wishing I had asked someone else to drive me, and I wished that Jeremiah could just stay in his pajamas all day, so I didn’t have to hunt the clean laundry to find jeans for him. I wished I could stay in my pajamas all day. But I didn’t suppose it would be appropriate to go to the OB’s in pj’s.

I did lay down for as long as I possibly could before dragging myself back out of bed to get ready for the doctor’s appointment. By that time my stomach had calmed down, and I was feeling slightly better. Jeremiah was excited to be dropped off at Elijah’s house again, and I went on to the appointment. I honestly thought I might end up getting that blood transfusion after all. I arrived while the office staff was still on lunch break and had to wait about 30 minutes before the office reopened. After I was inside and waiting to sign in, I saw a notice on the office wall that made me double check today’s date. Then I realized that I had my days mixed up, and my appointment isn’t until tomorrow.

It actually felt good to laugh at myself. And Jon made me feel even better by laughing at me too. So, here’s hoping that tomorrow I feel better than I did this morning. And I sure was glad I didn’t ask anyone to drive me.

Test Results

2009-03-02T21:00:00.005-07:00

We went to the high risk OB's today - another good ultrasound. The baby's growth remains right on track. We even got to find out how much he weighs right now - 1.6 pounds.

At the oncologist's office, we got the results to four tests - gene testing, echo cardiogram, CT scan, and routine blood tests.

gene testing - No gene mutations. This means my sister and daughters can breath a limited sigh of relief. Limited because, evidently, no one is immune to cancer. But at least they don't seem to be predisposed to it. It also means I don't have to have a hysterectomy to prevent other common cancers.

echo cardiogram - 55% ejection fraction. That means that with each beat, my heart is ejecting 55% of the blood it takes in. That's not a great number. The oncologist said that after this next round of chemo (which is now officially scheduled) I probably will not have any more before Baby comes or that fraction could drop lower. Normal/healthy is considered to be between 55% and 75%.

CT scan - No tumors or obvious developing cancers. There were some unclassified spots on my liver and in my bones, but those could have any of several causes, only one of which is more cancer. The overall report was positive. The radiologist did not think the areas in question had a high likelihood of being cancer, but metastasis couldn't be completely ruled out. The oncologist said the CT report will not change anything in my treatment plan. She assured me that everyone who has a CT scan has small abnormalities show up since the scan is so sensitive.

It was interesting to hear about other "small abnormalities". My upper lungs have scar tissue - I wonder where that came from? If I grew up in the Midwest, it would be considered normal since most people from there breath in some kind of soil spore that causes scar tissue. But I grew up in South Carolina. My lower lungs are flat-ish from not breathing deeply enough. (Jog harder, yell louder.)

blood tests - Still anemic, but not as badly as expected after the last tests. I have felt much better since chemo #4 than after chemo #3, so the oncologist decided not to do a blood transfusion at this point.

The approximate date for our little boy's birth seems to be settling around 34 weeks - around Mother's Day. This is two weeks later than we thought it would be last month. The results of the tests were good enough to allow his lungs to develop on their own without rushing things any more than that. My parents bought tickets last month to come out here based on the information we had then. Now it looks like they will miss the little guy's birth by a few days. They are going to check on what their airline will do for them.

Many people have asked about names for the baby. We haven't picked one out. We read Bruce Lansky's Mother of All Baby Name Books; Over 94,000 Baby Names Complete with Meanings, and the only six names we agreed on were the ones we've already used. I guess we'll just have to duke this one out. Stay tuned to see who wins.

Tests

2009-02-25T20:01:00.002-07:00

The CAT scan and echo cardiogram are done, and many of you have asked about the results. The next appointment is on Monday which is when we expect to find out the details. The technicians who perform the procedures can't say anything, so we're still in the dark.

The CAT scan folks were surprised to see a pregnant lady in their waiting room, and they only proceeded after talking to my doctors directly and informing me of the risks of radiation to the baby. I was aware that there are risks, but hearing about them in more detail made me worry. I spent the scan time praying that the Lord would protect our little one from injury because of the radiation.

2009-02-24T10:02:00.001-07:00

The CAT scan and echo cardiogram are scheduled at St. Joe's for Wednesday, February 25.

Chemo #4

2009-02-19T16:14:00.002-07:00

Today's treatment is finished. John Leland went with us so he could see how uneventful the process is. He was tickled to be given a sandwich and juice and plenty of candy.

My red blood cell count was still low, but not low enough to postpone the chemo. The doctor did say I would probably need a blood transfusion during this cycle, since the counts are likely to drop lower than they did last time. I'm hoping not, but time will tell.

I will be having a echo cardiogram and a CT scan sometime in the next ten days to help determine if I should have those extra rounds of chemo. The echo cardiogram is because I had "cardiac symptoms" with the anemia during the last round. They want to make sure my heart is up to more chemo. The CT scan is to see if the cancer has spread anywhere else.

The next three weeks will be full of visits to different offices. I don't have the dates for several of those appointments yet, but I'll try to post them when we find out and the news that follows.

Never Mind - It's Not Normal

2009-02-10T10:14:00.005-07:00

Yesterday was blood work day. Between each chemo treatment, blood is drawn to make sure I'm still functioning reasonably well. I've had so much difficulty breathing over the past week, that we were beginning to get worried. The blood work showed that I've become very anemic. Breathing trouble could be caused by much worse problems, so we were relieved. The oncologist said that if my hematocrit falls any lower I will need a blood transfusion. I've been anemic before, although not like this, and have some ideas how to help this problem. The doctor didn't perscribe any iron supplements - my guess is because I would need so much of them that it would cause very unpleasant side effects. The blood counts should begin rebounding very soon on their own.

My doctor has been so easy-going about the alternative methods of chemo support I've been doing. She takes notes on everything I'm doing and waits to see if it seems to help. She has never once made me feel silly for drinking lettuce juice, or for using any of the other things I'm taking. She seems to be completely supportive. When I suggested I could take some of the supplements I have in the past to help with anemia, she was very agreeable. So we stopped by Whole Foods on the way home and picked up some things which I started taking right away.

I will be having a CT scan or something like it soon, now that the little guy is bigger and developing well. It should help the doctors determine when is the best time to schedule the delivery as well as giving them a better idea of the extent of the cancer. I couldn't have any scans earlier because they put the baby at too much risk.

It looks like I will be having an additional round or two of chemo to prevent going three or four months without any treatment while we wait for the delivery and recovery afterwards. The original plan was to have four rounds of Adriomycin and Cytoxan, then wait for the delivery, then four more rounds of Taxol, then radiation. As I mentioned before, the oncologist is very nervous about waiting for baby and not treating the cancer. She is planning to proceed extra cautiously with additional rounds of Adriomycin and/or Cytoxan. I assume these rounds will include extra testing to make sure I'm not falling apart.

All this info may be like Greek, but maybe it will help to answer some questions about what lies ahead. Several of you have been through this routine and know about the ups and downs of treatment decisions. We appreciate everyone's concern and your prayers.

2009-02-07T17:01:00.003-07:00

We had another high risk OB visit this week. The little guy is still doing well - still slightly ahead in his growth and everything seems to be developing properly. The ultrasounds at the high risk OB's office are fun. The images are so clear. It's hard to believe this pregnancy only has about 10 weeks left. Most of my others have gone 42 weeks.

Tests checking on the chemo's effect on the blood cells are scheduled for Monday. This month has gone pretty well so far - no mouth sores so far, and a couple other side effects I've had before haven't happened either. I haven't felt as well over all - very little energy. I've been spending a lot of extra time in bed and sometimes have trouble breathing. The doctors say that's normal considering both the pregnancy and the chemotherapy.

The OB and oncologist are still trying to come to a compromise about the delivery date. Maybe some of those questions will be answered or at least investigated further at Monday's appointments.

Jon has been home quite a bit this week working on tax stuff. I'm so thankful for him. He's taken care of the kids a whole lot and I've had lots of chance to rest. We are surrounded by friends who have made life so much easier for us than it might have been right now. Thanks to all of you for the meals, laundry, cleaning, help with the kids, and encouragement.

Chemo #3

2009-01-31T10:52:00.002-07:00

The third chemo treatment is done now. I slept all day yesterday, but have felt pretty well. One more treatment to go, then we'll be waiting for the OB and oncologist to decide between them when is the best time to deliver our little boy. The OBs have said the delivery should not be any earlier than 32 weeks. (I'm 20 weeks now.) I'll be having a c-section which will require about a month of recovery time before the chemo treatments can resume. The oncologist is extremely uncomfortable about going at least 3 months without any treatment for the cancer, and I have a feeling she will be pushing for an earlier delivery. I don't know what's best. I'm not in a position to be calling any shots. This appears to be a competition between my health and our son's. God has shown that he can and will guide circumstances that are entirely beyond our ability to handle. I don't know why he has let things happen the way they have, but I'm thankful for years of experience that back up what the Bible says about trusting him.

Trust in the Lord with all your heart,

and lean not to your own understanding.

In all your ways acknowledge him,

and he will direct your paths.

Proverbs 3:5-6