A Conversation with Jessica

I had the following conversation with Jessica this morning on the way home from seminary:

Me: I like Taco Cabana's breakfast burritos.
Jessica: Yea, they're pretty good.
Me: I thought you didn't like eggs?
Jessica: I just prefer chicken to pre-chicken.

Pre-chicken? Oh my, oh my. She's definitely Dwight's daughter. ;)

Is it innate?

What is it about a pile of leaves that attracts children? Is there an inborn desire that forces them to run and throw themselves into even the smallest pile of leaves?


Tonight I took Johnathon and Deborah with me to a store. Just outside the store was a small pile of leaves. I probably wouldn't have even noticed them if it hadn't been for the way Deborah darted from my hand bee lining directly to the pile and started joyfully jumping. Johnathon quickly joined her and I stood in amazement wondering where they even got the idea.

I grew up in Indiana. We always had an abundance of leaves. I can remember raking huge piles of leaves. Of course, the best part was jumping on top of the pile when the work was done. But, my 4 year old has never seen us rake leaves. I don't remember reading any books about it with her and I don't recall Blue jumping in any leaf piles. Hmmm.... perhaps it's an innate ability to recognize ways to find joy.

Wouldn't that be great? Wouldn't it be great if we all had an ability to know just what would give us great joy? Just to know instinctively. Maybe you do. Or maybe, like me, you've had to work a little harder to figure out what brings you joy. Maybe you've had to experience some sorrow in order to realize that you have joy, or to more easily recognize the joy.

I don't know that a few years ago I would have stopped to appreciate the joy that they felt tonight as they jumped in the leaves. I might have just hurried them along to finish the shopping. I'm glad I could watch and share in their joy.

What gives you joy?

I just read an article by Dr. S. Michael Wilcox. Perhaps you have heard of him. I was going to just include a link to the article, but then I thought that ultimately I will be putting this blog into a book form for my children and the link will be lost. So, I hope that Doctor Wilcox does not mind that I have chosen to copy and paste the text here to share with you.

I think this article is inspiring. I love to travel. We do not travel as often as I'd like, due to financial restrictions. However, we can still explore the world through learning. Aren't we lucky to live in an age where we have such easy access to the world around us?

Passport Family Portraits, Written by Dr. S. Michael Wilcox
It was a Saturday afternoon, the mail lay waiting on the kitchen counter. I saw the slightly thicker envelope topping the pile addressed to my daughter-in law. When she came in the door my wife casually said to her, “There’s a letter for you, Carolyn, you may want to open it.” She looked at it and read the return address—U.S. Passport Office….. Picking it up somewhat breathlessly she broke the seal. Holding her first passport in both hands she said with almost reverent awe, but with a voice bursting with excitement and tinged with a measure of joyful disbelief: “I have a passport! I have a passport!”

For such moments I live. We travel for many reasons, but prime among them is the opportunity to watch our children thrive in the atmosphere of another country, among other peoples. Most people who travel carry their cameras, snapping shots with each new locality. We too bring our digital memory cards, but the most precious stored images are those held in our minds not those captured in the electronic world of gigabytes. They are the memories, savored and relived when the tour is long past of connections made between those I love and that broad, wide, wonderful world of which we are all citizens. These are moments that can never be captured by the limited focus of a lens.

We took our children on a journey from Palmyra to Winter Quarters. At that critical stop in Carthage my nine year old son shared in the collective memory of that sultry June day in 1844; heard as if he had lived it, the hopeful sadness of “a poor wayfaring man of grief,” then the noises of the mob, the rush to the door, the gunshots, the final words, and the troubled silence of the summer rain on the grass below. I found him a few moments later outside lost in the poignancy of the moment, the love of Joseph forever sealed into his heart.

Perched on a cooler next to the driver’s seat in a bus in Guatemala another son, age 12, listened to the unceasing joyful banter of our driver Sergio. It was all in Spanish, of course, and our son couldn’t understand a word, but the feelings came through and a bond was created strengthened every day as the two became inseparable. He shared with him the colorful costumes of the Highland people, the farmers in their corn fields green with the summer rains and the women weaving by the lakeside. They saw the children peddling their tiny homemade crafts, smelled the tortillas warming on an outdoor grill, laughed at the antics of the spider monkeys—and my son’s spirit was enlivened. When we left, Sergio put his hand on his heart and patted it tenderly his dark eyes soft as he looked at my son and said, “Mckay, McKay. In here.” You can’t buy that kind of education for all the tuition in the world.

A few years later we walked with our daughter and son in law through the rainforest at Tikal whose pyramids wait hidden until that moment when the jungle clears and they tower above you in Mayan magnificence. Not one given to expressions of exhilaration or the use of the exclamation point my son in law stopped dead center in the trail looked up to the roof comb scratching the sky and said, “You’ve got to be kidding me!!!!!!” It was a six exclamation point sentence and we all laughed in the delighted uninhibited emotion of his wonder—the most excitement I had ever seen generated in this man of controlled and guarded enthusiasm.

There was that moment in the Louvre with my oldest daughter who took an Art History in college. She loved the painting by the Dutch master De La Tour titled “Christ with St Joseph in the Carpenter’s Shop.” De La Tour was a master of the contrast of light and dark and you can almost feel the warmth of the candle held by Jesus, it’s glow shining through his closed cupping fingers. We were running out of time and had not found this one painting she most wanted to see. We separated to broaden our search. At last, rounding a corner, there was our daughter transfixed before the painting tears flowing from her eyes. We said nothing. The silence confirming the truths imparted. And in my memory will always breathe that moment in the Sistine Chapel as my wife looked up to the central panel of Michelangelo’s ceiling. There was the Father cradling the yet uncreated Eve in the protective reach of his arm, the other extended in life-bestowing gift towards Adam who received the offered sacrament in trust and adoration. My wife’s head bent full back was unaware of the tears dropping down the side of her face wetting her hair and ears or the soft murmur of her voice.

There were the Chinese kites soaring above the deck of the ship bright against the cliffs of the Yangtze River and the soaking downpour on the Li as we vainly but laughingly ran for cover. Reading Wordsworth’s “Tintern Abbey” in the ruins that inspired it, listening to my father in law recount the Christmas story in Bethlehem, counting tropical fish on the Great Barrier Reef, walking in Red Square surrounded by echoes of the fading Cold War, an evening meal in a sidewalk café off the Piazza Navona in Rome, a son doing magic tricks with the children in front of the Pyramids, all rest comfortably in the holding places of my heart. It doesn’t seem to matter where or how far one travels, sharing it with family sanctions the recollections and embeds the feelings deep within.

The story is told of a guard at the Rijkmuseum in Amsterdam who was standing in his assignment next to Rembrandt’s “The Night Watch,” the museum’s most beloved treasure. He heard a visiting tourist comment, “I don’t see what’s so great about that.” “Ah,” replied the guard, “But don’t you wish you could.”

There is nothing quite as satisfying or so completely heart-healing as when your own child opens their eyes and sees. Then the earth is created anew, man’s dignity reborn, and the world seems a friendlier, more welcoming place, where all are lifted by all. “I have a passport! I have a passport!” But not one that simply allows us to visit other countries, but a passport to experiences that leave us and our families touched by the universal goodness scattered in a hundred thousand places across this earth—from pole to pole.

Are you inspired?

If I could take my kids anywhere, I would love to take them on a history tour. Wouldn't it be fun to learn history in the places where it happened? Around the world or even just around the states. Of course, Jessica would probably love to go on an art history tour. And, well, we'd need to throw in a little diving for Dwight. ;)

Where would you go if you could travel?

Every lit bit helps, right?
{sigh}

Halloween

There's a special excitement in the air at my house today. Maybe I should call it ... chaos. Chaos might be the better word. My kids are SO excited about Halloween. They love dressing up and have been planning for this night since last 10.31. It's interesting to hear the ideas they go through, and how many times they are absolutely certain they have decided on a costume. Yet, tonight all of them are wearing things that were just decided within the last 2 weeks or so.

Unfortunately, Daddy won't be available to do the makeup or to help with costumes. That puts the burden on the kids cause everyone knows that I'm really not into this holiday at all. I am a pretty good sport about it, but I could skip it altogether and be very content. Maybe buy a few new good books, spend the evening reading a mystery or watching a suspenseful movie. (Note that I did not say a thriller.)

It's really not the candy part that bothers me. I probably like the candy as much, if not more, than my children. I'm truly a candy fanatic. I just know that it's not that good for me and so I exercise a lot of self control.

Anyway ... I must get back to work. We have to go to the store. David was planning to be a transformer, but due to some unexpected stitches in his hip he can't bend over well. Thus, I'm off to buy a few last minute items. I'll be sure to post pictures later.

I hope you all enjoy your Halloween festivities, whatever they may be. Be safe!

I likened the last mammogram's squishing effect to making pancakes. Today -- crepes.

Ouch.

The results are in, and...

All of the hepatology tests were negative. The bone marrow biopsies were both negative. Most of the blood work came back within normal range. The few things that were outside of normal range are not worrisome.

As for the PET scan, there were a few tiny areas that lit up on the back of my lower neck and on my upper right thigh. They were all very small. The mammogram also found a small lump in my breast.

So moving forward, the plan is to stop the maintenance treatments. This doctor thinks it serves no valuable purpose. It is the same drug that we used in the first round, which wasn't entirely effective. Therefore, this doctor thinks that it won't prevent the lymphoma activity completely, but could mask the lymphoma on tests.

Additionally, he still wants me to have a dermatology consult. He'd like the dermatologist to biopsy anything she thinks is suspicious. And, I'll see my Rheumatologist next week to determine if I'm having autoimmune issues, again.

All in all, the news is good. Thank you all for your prayers. I'm looking forward to not having treatments for a while.

And, now I'm off to color my hair ... Auburn. Sounds like a good fall color. :)

You know the ID bracelets they always put on patients at the hospital? Well, here at MD Anderson they even put your picture on your bracelet.

Would you rather...?

Good morning!
I'm still at MD Anderson. I'm waiting for a call from the doctor's office to determine what today's schedule will be. I was looking forward to sleeping in this morning, but was wide awake by 7.30. Oh, well. I suppose that's good for me, right?

So, let's get to the good stuff: today's "Would you rather...?" question.

Would you rather be trapped in an elevator with wet dogs or with three fat men with bad breath?

Hmmm... I think I'll have to go with the wet dogs. While they might really stink, they will eventually dry. Oh, but the question doesn't address whether they're cute dogs or friendly dogs or hyper dogs. Ummm... maybe it's been too long since I've smelled a wet dog. Oh, and they also do that shaking thing when their wet that sprays the water all over. I think I'll change my answer. I'm going to go with the 3 fat men. I usually have some good strong cinnamon gum in my purse. I'd just insist that everyone have a piece.

Of course, maybe their weight is the reason we're stuck to begin with ...

Have I ever told you about the time that the kids and I were stuck for a few minutes in an elevator?

We all jumped. Do you know how fun it is to jump in an elevator when it's going down? It's a weird sensation. You jump up as it's still moving down. So your down is further than your up. It's fun! So, I was the responsible (read fun) Mom riding the elevator with all my kids and we all jumped. When we landed, the elevator just stopped mid floors. We stood there for a few minutes looking at each other. Thankfully, it started moving about 2 minutes later. But, 2 minutes is a long time to be mid-floors in an elevator with 5 kids.

If you want to try an elevator jump, I'd recommend: (1) Give yourself at least 2 floors to go down. Like if you're on Floor 3 go to Floor 1, but in a pinch, you can do it across just one floor. (2) Remember you jump up when the elevator is moving down. It's not much fun the other way. (3) don't try it with other adults on the elevator. But, if you do, let me know how they respond. =D

PET Scan is Done

I arrived at 2.50 for my 3 pm PET scan. I had to go for 6 hours without eating. Since I had an appointment at 8 this morning, my last meal of eggs only was at 7.30 am. (You have to skip all sugars and carbohydrates prior to a PET scan. They said I could have any kind of eggs and some bacon. I just had eggs.)

I knew the appointment would take several hours. They break down the appointments here so that at 3 pm was my "PET Prep"; 3.30 was my "PET Injection & Localization" and 5 pm was my "PET Scan." Also, the prep literature had explained that they would give me an injection of radioactive sugar and then I would need to lie still for 60-90 minutes. I also knew the scan would take about 30 minutes. So, I figured I would be done by 6.

Unfortunately, they were running almost 2 hours behind schedule. I didn't finish until about 8 pm and I felt pretty lousy by the time we finished. The test was easy. I was just hungry and tired. And, today I took the shuttle so I had to wait an additional 25 minutes for a ride back to the hotel.

But, really the ride was one of the best parts of my day. The driver was so nice. He introduced himself to each of us as we got in the van and then called us by name the rest of the time. I was the 2nd person picked up and we picked up another 7 people. Somehow that driver made all of us feel so comfortable that we were chatting with each other. One of the women was being dropped off at the hospital to see her husband who is in the Intensive Care Unit (ICU). Another from Tennessee has a rare form of cancer in his lower abdomen. They are hoping to shrink his tumor so that they can do surgery. He's on his 5th round of chemo and had just received his new dosage. A lady from Arizona was being treated for breast cancer. A man from Alabama was there with his mother. She's been fighting colon cancer for 5 years. The drs in Alabama wanted to send her to hospice. The drs here have given her hope for another few years.

So what do a van full of cancer patients & their support people talk about? Food. We discussed all the various options for food. We laughed and talked as if we had been friends for years.

That's one of the amazing things here. The place is full of people who are going through tough times, but you know I haven't seen even one person act grumpy or impatient or rude. Everyone is really polite and friendly. I wish all these people were not going through tough times, but I love that they are, as one nurse said, "the strongest of the strong." They give me courage and strength.

I'm off to get some sleep now. I'm looking forward to sleeping in tomorrow.

Oh, and no, I do not have any results yet. I should hear from the doctor tomorrow as to whether they want to do the biopsy of the lymph node on my neck. He is also still trying to get me a Hepatologist consult for this week. I'll keep you posted.

I'm back from the neck ultrasound. The lump on the back of my neck is an enlarged lymph node. They also found several other enlarged lymph nodes. (I was surprised by that since no one has felt any others.) After taking lots of pictures, the u/s tech paged the doctor when she was done. He wants the PET scan done before we do the biopsy.

So, I have a little of down time till my PET scan. I'm going to work on the employment resource surveys we recently did at church. I volunteered to do the data entry on all of them. I enjoy typing. I find it very relaxing. I think I'll finish them all today and it'll be nice to have all those network contacts available.

I also may do some reading, and take a nap. Hope you all are doing well!

Would you rather...?

One of my amazing friends, Sarah, created a super fun bag for me the last week when I came to Houston. She included a list of "Would you rather..." questions. So, in honor of my list, I thought I'd share them with you. Just one each day for a while.

So today's question...

Would you rather drink 1 gallon of ketchup or 1 gallon of mustard?

Hmmm.... this one is easy. Definitely mustard. I love mustard, plain old fashioned French's yellow mustard. I don't really like it on stuff. Just plain. I'm not sure I'd love an entire gallon. I usually only eat a couple of drops.

What about you? I can't wait to hear what you'd rather do.

Back to MD Anderson

Tomorrow morning I have appointments at MD Anderson again. I'll be having an ultrasound guided biopsy of a lump that is on my neck. Ouch. And, then I'll also be having a PET scan. The insurance company finally approved it. I suspect it will be a long day tomorrow.

I drove down by myself today. I listened to John Bytheway for most of the trip. He is a really funny speaker. I tried to find a link where you could listen to some of him. I think you might like this one. It's a little bit more serious than some of his talks, but it's still a really good talk.

In one of the talks, he likened our life here on earth to a movie. That caught my attention for a couple of reasons. John said he's often thought that the "judgment" to take place after this earth life would be that we will all watch each other's movies.

So, here you are on earth, making your movie. Everything you do is included in the movie. Now, if you're like me, you might have a few thoughts of "oh, crud, I don't want everyone to see every thing that I've ever done in my life." I've had a few stupid moments.

But, here's the great part... the movie can be edited.

Just like all movies, we can cut out any scenes we don't want others to see. How? Repentance. Isn't that a great way to think of repentance? It's just editing your movie.

Here's the best part in my opinion ... it can happen on a moment by moment basis. I don't have to wait till I finish my movie to edit it. I can edit out clips from today or from a year ago. Or even 20.

Isn't it great to know that we can be completely clean all the time. We simply don't have to wait. I'm really thankful for repentance. I make mistakes every day. I'm so glad I can be forgiven from them.

PET Scan Postponed

The insurance company has still not approved the PET scan. They haven't denied it. They just haven't approved it. So, it looks like I'm done with testing until next Tuesday. I'm looking forward to seeing my kids tonight. I have never been away from Ryan. I miss them all!

Today's Testing Fun

This morning I went in for an echocardiogram. No big deal at all.

Then it was time for the dreaded bilateral bone marrow biopsy. Thankfully, I had scheduled it with sedation. The lady who set up my IV, Patti, was so amazing. She told me the coolest story of lots of good people who supported a man diagnosed with Leukemia. I love meeting these people and hearing their stories. It's a little overwhelming though at times to think that every person on the MD Anderson campus (which is huge) has a story. Maybe they have cancer. Maybe they're a cancer survivor. Maybe they are working there. Maybe they have lost someone to cancer. But they all have a story. If you want to meet courageous people, this seems to be the place. If you want to meet, caring people, this seems to be the place.

I'd love to hear more of their stories. But, I've digressed.

Patti set up my IV and assured me that they were going to give me the "good stuff." She promised I wouldn't feel anything and I wouldn't remember anything. WHEWHOO!

Patti was right. I didn't feel the test, but now that I'm sitting on a very firm mattress, I am feeling far too much! Ouch.

I'm not sure how I'm going to sleep tonight. Both back sides are bruised and hurting and I have a catheter hanging off my chest. (It's in my medi-port so that I won't have to get stuck again tomorrow for the PET scan.) Hopefully, I'll be able to get a little sleep.

Yikes.

Today is a bilateral bone marrow biopsy. Yuck. Not just one. Two. Both sides. This is not going to be fun.

Today was a day off from testing and all cancer related things.


Michelle and I went to the Houston Temple, which is beautiful, of course. If you're not familiar with the Temple, you can click here and watch a short video that tells why Mormons build temples. Unfortunately, the video doesn't share the best part of the Temple with you. The best part is just the peace one feels when they attend the Temple. They are the most beautiful places and very quiet. I feel closer to God there than any other place on earth. If you haven't been to a LDS temple before and you're ever in an area where they are doing an "open house" at the Temple, please go. I think you'll enjoy it.

Michelle and I are staying at her sister-in-law's house. Isn't that nice? She doesn't even know me and yet she offered to let us stay there. The best part of the story though is really about Michelle's husband, Suresh. He voluntarily took the week off work so that he could be with their kids ... so that Michelle could be with me. Isn't that amazing?

I really am very blessed.

More Tests

I had more tests today. Yesterday they took 12 vials of blood, did an EKG and a chest x ray. Today they did a Mammogram, a CT scan with contrast. Contrast everywhere. Not pleasant. 2 big bottles of barium. Berry flavored barium. But, that wasn't the worst part of the barium. They also did a barium enema. And, the funny little man who had the privilege of doing it, kept snapping his gloves as I was lying down on the scanners bed. Nice. Since he was snapping his gloves, I gave him a hard time about what he must have done to get stuck with that job. I'm sure not all patients are as pleasant as me. haha.

Jana left today to go home. It was so nice of her to drive me down here and to stay with me. She is a neat lady and I really felt privileged to spend so much time with her. Hopefully, you have (at least) one of those friends who just by their example reminds you of all the good things in life, all the really worthwhile things in life. I'm lucky that I have several of those friends. I really am very blessed to have so many amazing people in my life.

Another one of my kind, amazing friends came down from San Antonio to be with me. Michelle went with me for the CT scan. I volunteered to let her go in for the barium enema. I can't believe she didn't take me up on the offer. ;)

Oh, and regarding the mammogram. One word: pancake.

MD Anderson

On Sunday, my friend Jana and I came to Houston. This morning I had an appointment with a Lymphoma Specialist at MD Anderson. If you're not familiar with MD Anderson, I'll just summarize it by telling you they are ranked #1 in treating cancer. The have an amazing reputation, and I can tell you that it is well deserved.

Today I first met with a lady for registration. Then a volunteer came over to explain just what would happen. He was really knowledgeable and kind. I then reviewed my history with a nurse. She found it unbelievable that I had not had a PET scan or at least a follow up CT scan. She was really pretty and she reminded me of one of the young women that was in my class when I lived in Plano, Texas.

When the nurse left the room, she told me that the research assistant would come and then I could wait in the waiting room for the Dr to be ready. However, about 1 minute later, the doctor came in. He had reviewed all my records and made notes on them. (Isn't that amazing?)

He was also surprised that I had not had a PET scan or a follow up CT scan. He was able to feel the lump on my neck and also saw a couple of other spots on my back that may be new "lesions." He said he would agree with the diagnosis of marginal lymphoma and would originally have put it at stage 4.

He ordered all new scans and some new tests as well. We discussed the "what if's." If it's not the Lymphoma that is causing the symptoms, it could be autoimmune related. If it is the Lymphoma, it could be in "partial remission", meaning that it is essentially just waking up, or it could be active. It could also be another type of cancer.

To determine what's going on, he's ordered a bunch of tests. Blood work, EKG, Echocardiogram, Chest Xrays, CT scans, mammogram, neck biopsy, bone marrow biopsy, and PET Scan. He'd also like a dermatology, hepatalogy, and gastroenterology consult.

We discussed briefly that he will tolerate 1, maybe 2 relapses before he refers me for a stem cell transplant. Also, they have a clinical trial that is opening in November that is specifically for recurring marginal lymphoma.

Obviously, it doesn't make sense to spend a lot of time dealing with the what if's. It's much better to just get the information we need. So, let the testing begin!

It's In The Valleys I Grow

My Dad shared this poem with me. I think it's beautiful!

Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then I have to remember
That it's in the valleys I grow.

If I always stayed on the mountain top
And never experienced pain,
I would never appreciate God's love
And would be living in vain.

I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.

I do not always understand
Why things happen as they do,
But I am very sure of one thing,
My Lord will see me through.

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!