Happy New Year

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.

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

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.

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

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

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

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...

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

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

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.

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

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

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

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

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

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

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...

...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

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

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

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

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

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

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.

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