Good News:

Selected Quotes from Cat Scan Report

CHEST

"5 mm images were obtained throught he chest following intravenous contrast.

Focal fibrotic changes are again seen within the left apex, similar in appearance to the previous study....No focal areas of consolidation or vessels is noted.  An approximate 15 mm ap window lymph node is again noted, unchanged.  Small prevascular lymph nodes are similar in appearance.  Right paratracheal Lymph Nodes are stable..."

Impression:

Stable appearance to the mediastinal lymph nodes.

NECK:

"3 mm images were obtained from the scull base through the thoracic inlet following intravenous contrast.

Visualized posterior fossa contents appear normal.  The parotid glands appear symmetric.  Left submendibular glands are smaller in size compared to the right, similar in appearance to the previous study.  The nasopharynx and oropharyngeal regioun appears normal.  ... An approximate 7 mm lymph node is again seen posteriour to the left carotid artery and internal jugular vein, similar in appearance to the previous study.  No new lymphadenopathy is present.

IMPRESSION:

Approximate 7 mm level II lymph node again seen on the left, not significantly changed.

No new lymphdenopathy or focal inflammatory changes.  The exam is stable."

Because I get detailed questions, I thought that I would give you the most up to date and detailed information that I have.  I know that meaning is difficult to penetrate as a result of medical jargon.  But it is like that for me, too!  The bottom line to all of this is that the Hodgkin's is still there, but at present, it is stable.

I have conference with Doctor Leming next week, but we will probably decide to again delay treatment, and maybe even extend the time period between CT scans.    So, considering that I have not been taking any treatment, this is about the best news that we could expect.

Thank you for your thoughts and prayers.  I am touched and grateful for the cards and kind words.  I rely on your goodwill, though I am undeserving of it.

God blesses me with days... and He does the same for you.

Oh, and regarding the broken leg.  It's sore and swollen.  I need some ibuprofin!  But it's getting much better.

Be Blessed.

JDS

My wife and I and our 3 children had gone to Tennessee to spend a little time with Julia's family.  We returned from the trip on September 14, 2007.

On September 15, I had purchased 5 new trees for the farm.  Matthew, Elizabeth, my father-in-law (Lyle) and I planted the trees.  Lyle and Carolyn left later that day.  I watered the trees that day and did the same the next.

On September 16, I had been outside off and on for most of the day watering the trees.  Sometime after 10:00 p.m., I went outside to give the trees a final water. About 10:30 or 10:45 p.m., I turned off the water.  My 6 year old Brittany dog, Scout had been out running around the farm.  So, I said, "C'mon, Scout.  Let's Run!"  And I took off running down our concrete sidewalk (which has a slight downward grade.)

I might mention at this point that, while I am not a little guy, I have always been pretty fast when it comes to a sprint.  When I was in grade school, I was chunky. So it was always funny when the lean, athletic kids would be sprinting, and I could run past them.  My junior high football coaches were so surprised at my ability to turn speed that, in addition to being an offensive tackle, they made me a running back (a full back.)  In high school, the football coaches made me a pulling guard and let me pull as my discretion dictated to lead for the running back.

Anyway, I called out to my dog, "C'mon, Scout.  Let's Run!"  Just as I was getting to top speed running down this sidewalk, Scout turned broadside right under my legs.

Now, a dog is a very solid creature.  They are stable, standing on four feet, and have a low center of gravity.  Scout is exactly knee high and is a real athlete.  So, when he cut into me, he took my legs out.  I tried to avoid hurting the dog (which is kind of silly because dogs are tougher than people, but it all happened quickly.) I tried to avoid tangling my feet and twisting my knee.  I tried to avoid skidding on my face on the concrete.  I remember thinking these things in the quarter of a second it took for the fall to happen.  On these scores, I was generally successful.

However, as I fell, I landed on my hands and jarringly hard on my right knee.

I knew that something was wrong.  I knew I had scuffed my palms pretty good. Even 2 ½ weeks later, I still have pretty significant scabs.  I suspected, but did not know that I had skinned my knee (my suspicions were soon confirmed.)  But these weren't the problem.  The problem was that I couldn't straighten my right leg and the knee had gone instantly numb.  I thought, "OK, Houston, we have a problem.  Ouch, Ouch, I'll have to see how this thing feels tomorrow."

I blew both of my knees out in Junior High and High School football.  I thought that maybe I had done the same to my right knee again.  It felt about right for that.

Slowly, I got to my feet and was then able to straighten my leg.   I hobbled (in the most hobbly sense of the word) into the garage.  I fed the dog.  I hobbled out and fed the cat. (Now sweating under the pressure.)  I went up the four steps to the garage door, closed the bay doors, reached for the door handle, and....dang.  The door was locked.....

So, I re-opened the bay doors, hobbled down the steps, around the back of the house, through the screened in porch, and through the back door.  I went through the breakfast room and into the kitchen, thinking to take ibuprofen and get some ice.  By this time, the knee was holding no weight whatsoever.  I thought, "OK, if I can just make it upstairs and into bed,  I won't have to wake up Julia.  Maybe, it will be better tomorrow."  I abandoned the idea of the ibuprofen and the ice.  I leaned on the counters and chair rails and got around to the steps.  But that was as far as I could go.  My willpower to go further was waning, and I was coming to the strong realization that there was something substantially wrong.  I didn't want to go upstairs and then come back down later.

So, I sat on one of the bottom steps and called upstairs, "Julia....can I borrow you for a few minutes."  Julia came downstairs pretty quickly.  She can Tell. (Capitalization intended.)  We discussed the possibility of waiting until morning (I discussed, she rebutted), but soon we concluded to go to the Emergency Room. She called my parents.  They live fairly nearby and came over very quickly.  Mom watched the kids, and Dad took Julia and I to the hospital.

It was a chore getting me into the car, because the right leg was completely gone.

They put me into a wheelchair at the hospital.  Literally, various nurses kept running my leg into objects.  I would call those occasions "Pain Spikes."

It turns out that I broke my tibia at the top and just below the knee.  It is an "L" shaped break 3 or 4 inches long.  I don't have to have surgery, though.

I can tell you that breaking a leg really smarts...it's a close thing between a broken leg and a screwed up ACL, but I think the ACL injury wins the pain quotient.

I never knew it, but a broken leg makes you lose weight.  I've lost 9 lbs. so far.  It also makes me very tired.  I sleep longer and get tired more quickly.  Fortunately, I have people who take care of me (Julia, Carla - my secretary, Dee - one of my law partners, Mom, Dad...lots of others...Thank you.)

Life carries tolls that must be paid.  If you are going to live fully, it's ok to take some risk.  You breathe more fully.   In the end, this is who I am.

So, the next time I am out watering trees late at night and Scout is running around the farm, don't be surprised if you hear me call out, "C'mon, Scout.  Let's Run!"

But keep 911 ready on speed dial.

Be Blessed.

JDS

First, No results yet.  But I'll tell you how the scan went.

On Monday, I had another CT Scan.  I drove to the Hospital and headed off to Radiology.  It was a tiring exercise, because I was on crutches.  (That's another story that I will update you on next.)

Before a CT Scan, I'm not allowed to eat after the night before until after the scan.  But I usually eat only a very light breakfast, anyway.

My appointment was at 9:00 a.m.  That means that I had to drink half of the chilled barium drink at 7:00 a.m. and the other half at 8:00 a.m. (8:18 a.m., actually.)  As a drink, it is very dense.  It's like drinking metal.  It is also very yucky.

I arrived.  The receptionist took me back quickly (because of the crutches.)  But she made sure to tease me for my limping presentation.  I filled out a little paperwork.  Soon, they took me back to the Scan.

An IV was inserted into my right arm.  (I have excellent veins in the crook of my right arm.  However, every time I go to the doctor's office, the hospital, or anywhere Hodgkin's related, they take blood or put in an IV.   It is almost always from the same place; the crook of my right arm.  So, my veins there are beginning to develop scar tissue.  I don't know that they will always be able to use that spot.)

It took longer than usual.  (But still much better than a staging laparotomy.)  There were two injections through the IV.  Each one, I felt move up my arm and into my chest.  It makes me clammy and light headed and gives me a nauseous feeling.  I kept my arms at my side after the first injection, and the table moved back and forth taking me through the donut.  After the second injection, I raised my arms above my head as the table moved me back and forth through the machine.

After, the scan was complete, the technician reentered the room and removed the IV and taped a cotton swab to my arm.  I got up from the table and put my wallet and phone back in my pocket.  I replaced my watch on my arm and my crutches were returned.  It's not terrible, but it takes me all day for my system to return to normal.  They instruct you to drink lots of liquids to get the dye out of the system.  I was tired by the time I crutched (What is the term in lieu of walking when you are using crutches?) back out to the car.

I await the results.  I hope that the tumors continue to grow only slowly.  This will buy me more time between scans and between treatments.

Just a small skirmish in the overall conflict, a part of my life.  But, it's not bad. Life is a singular experience filled with adventure where you find it. 

Be blessed.

JDS

You may have noticed that my webpage has been down for the last month.  My administrator has been working on restoring it to functionality.  They have indicated that the problem was probably with the firm doing the web hosting.  All seems to be in order now.

I have several things that I want to write about to catch everyone up, but that will be one step at a time.  I can't do it all in one night.

So, for the moment, I am once again functionally up and running.

Thank you for your patience and prayers.

Best.

JDS

Scheduling conflicts have arisen, and my CT Scan is now scheduled for October 1, 2007.

I really don't like putting it off for the additional Month, but that appears to be the case for the moment.

Altogether, everything else is going ok. I've been a little ill lately, as has Sophia. (She has a fever of about 103 and some pink blotches.) So, I've obviously been a bit slower than usual. Despite this, Julia and I are still trying to get and stay fit.

I have a lot of thoughts and reflections that I want to share with you. I had enough time to update you on the rescheduled CT, but need more time to share additional thoughts.

Be Blessed.

JDS

Hi, Friends.

Just a brief update to keep you apprised.

My next C/T scan is September 6. I can't give you a conclusion to that. Just that's the next date and we will check the progress of the tumors then. Hopefully, we will be able to put of treatment longer. We'll see.

In the meantime, I and Julia are working out together: Lifting weights 3 days a week and running 3 days a week. Stronger is better, because resilience is important.

I am performing as the Butler in Mason Community Players' production of My Fair Lady. That's right. For a night of torture, you can come hear me sing. Tonight is opening night.

I am also directing A Christmas Carol at Fairfield Church of Christ which will show in early December. Lots of Actors, lots of coordination...fortunately good people work with me to make it all happen.

Continue to Pray for the Coco's after the loss of Alese.

Be Blessed.

JDS

Among other things, I like to see my cousin, Kathy. Her mother is my mother's sister. Kathy was born in December and I in February of the same year. Growing up, we were next door neighbors. We went to the same elementary school. We played in the creek together. Our families were always together. We rather favor each other in appearance. So, we really grew up during those very young formative years together. Even though we don't really keep up with one another as we should, it's still never uncomfortable around Kathy. I keep a book that she wrote for me when she was in Kindergarten or first grade. It says "I Love You" with a backwards "L" on the cover. It has coloring book pages that she put together inside.

Kathy was always very, very smart and cool headed. In the winter one year, my brother, Stephen, fell into my grandparent's pool. He was 5 or 6. I ran into the house to tell my mother, aunt and grandparents. By the time we all got outside, Kathy had retrieved the pool net and reached out to Stephen and helped him back to the edge and out of the pool.

Kathy also showed me one of the single greatest expressions of loyalty that I've ever seen. When I was 12 or 13, we were walking on the ice on the creek. I had a 4 foot stick in my hand. I slipped and fell very hard on the stick. It punctured my eyelid and into the eye socket. In that moment of shock, I told her not to tell anyone what had happened. Of course, by the time I got back to the house, it was obvious that I would have to go to the hospital. On the way, I told my mother what had happened. I got stitches. The splinters were removed. We were gone for several hours. I didn't even think about telling Kathy not to tell anyone what had happened. When we came home, Kathy was in tears.
While we were gone, my grandparents and aunt were persistently trying to get Kathy to tell them what had happened. She wouldn't crack, though. It hurt her to not tell, but I had asked her not to. And she held. I loved her for that. I thought it was very brave.

This year at the family reunion, I watched my small children and the young children of my younger brother playing together on a large outdoor play set. It was very tall, maybe about 15 feet from the floor of the upper level to the ground. No safety rails. Kind of old fashioned. The kids ran up the shiny metal slides backward. For fun, they pushed each other very fast down long slides. My brother's youngest is 20 months old. He went to sit down on the long, tall slide and sat down over open air. He fell the 15 feet to the turf below and hit very hard. He cried and whimpered. We looked him over to make sure he was ok. All the brothers and sisters and cousins stopped to watch and make sure he was ok. Soon he was back at play and all was laughter again.

I watch my own small children. I know I can't keep them from falling. I'm not even sure that I want to. But, when they fall, I hope someone will be there to defend them fiercely. As they grow and play; face the joys and hardships of life, I hope that they find love and loyalty. I hope that they find people to hold on to and to hold up. I hope that their mutual loyalty will be there to define their memories and their life.

Late at night in November or December of last year, cramps hit me in my abdomen and legs (calves and back of the legs). They didn't build up. They just hit. I sprung up out of bed. Unfortunately, another side effect of chemotherapy (for me) is that I get light headed much more easily...like vertigo...kind of. So, add a momentary black out to the cramps in the night. My legs went out from under me, I grabbed the bed post (fairly high, so think leverage), and as my weight went to the bed post, it broke away from the bed.

Lovely. On the floor with a black out, cramps in legs and abdomen and a broken bed in the middle of the night...and I don't want to worry Julia.

There's no end to this story, the black out and cramps subsided. I stacked books under the bed frame for the next few days until I got it fixed and told Julia that I had lost my legs because of cramps. No worries.

I tell this story, because I have been taking for granted how well I feel right now. And I love it. But I also tell this story to be reminded how nice it is to feel good. It's hard to remember and appreciate even for me sometimes what a gift that is.

So...my wish for you for today is ease of breath, laughter and sensual pleasure. Ask your spouse for a foot massage. You give one, too.

Be Blessed.

Thank you for everyone's concerns. A little update on current symptoms and status.

Right now, I am in between treatment protocols. Doctor Leming prefers to keep me out of therapy for as long as possible. He debates whether he should give me Rotuxan, an antibody treatment that targets CD-20 cells, on an ongoing basis between treatment protocols. I don't think he has decided that issue.

Between treatment protocols, I lose weight. (That is a good thing, not a bad thing. I tend to gain weight during treatment, because one of the drugs I take is a steroid called Prednisone. It doesn't affect me as badly as it does some others, though.) Between protocols, I make it a point to work out and get stronger. I walk, lift weights and try to be active around the house and farm. I also work on playing with the kids more rowdily.

By the way, I have also changed my diet completely. Red meat and chicken are off the diet (unless I'm going into the deep woods camping and need preserved foods.) So, I eat fruits, vegetables and fish. Basically, I will eat only high quality foods and high quality proteins. It helps make me stronger and (I don't know if this helps or not) makes me feel as if I'm strengthening my immune system so as to slow any cancer growth.

As far as current symptoms: I get tired more easily than I should and sleep longer hours, I have trouble swallowing sometimes and food often gets lodged (I'll spare you the details.) I have itches, especially across the chest, but it doesn't drive me crazy. As the disease grows, I find that these symptoms get worse. I also tend to have increasingly worse headaches. So, thank heavens for ibuprofen.

I have noticed that people with Hodgkin's Disease begin to get dark circles under their eyes. I call them Hodgkin's Circles. I had them before my diagnosis in April of 2006 and was just unaware of what they were. You can see them in my photographs from that period of time (even the ones on this web page). My mother saw them and expressed concern over them and other issues before my diagnosis in 2006. Increasingly dark circles is one of the symptoms that I especially watch out for.

Altogether, my health is pretty good right now, as is my strength.

I enjoy this time between treatment protocols. My life is normal and I get to catch up on a lot of things that become increasingly difficult when I am under treatment.

I am grateful that this form of HD grows more slowly than some of the other variants of HD and gives us the option of pursuing this course of treatment.

Thank you for your ongoing thoughts and prayers. I am grateful for the support that each of you give me.

Be Blessed.

JDS

We are awaiting treatment until the Hodgkin's Disease begins to interfere more substantially with my overall health. My experience with the treatments since April of 2006 has been one in which I have not lost my hair. I'm really glad. I worry about what my little children might think. I know that they would get used to it quickly, though. Maybe, they would laugh and have fun with it. I would probably cut Matthew's hair shorter so he and his sisters can feel more at home with it. Actually, before treatments began this time, I cut my hair very short so that I could ease the kids into it. But this time, I didn't lose my hair.

When I was a kid with cancer, I lost all of my hair. I would take Adriamycin and Procarbazine, and it would all fall out. That would happen over and over again. My hair always grew back the same. That's not true with everyone. Sometimes, it changes color or texture.

Your hair doesn't fall out immediately. It takes a few days...maybe a week. Your hair falls out, because the chemotherapy attacks fast growing cells. Hair is one such fast growing cell. (Finger nails are another. During chemotherapy, you can see in finger nails when I had a treatment, because I develop ridges. It's like looking at rings on a tree. Normal, chemo, normal, chemo. The last ridges are just now growing out of my nails from my last chemotherapy treatment.) When your hair falls out, it falls out in clumps. It may look normal or a little dry. But when it is ready to come out, you can reach up, grab a hand full, and after a little tug, the hair will come free.

When it gets to this point, cut it and shave it!

It's frustrating letting it fall out over a period of days until you are left with a very sparse forest of hair. (You will need a "Lorax" for your head....remember Dr. Seuss's character who spoke for the depleted forest.) When I let it fall out, I always wound up with a mess of hair on my pillow and hair in my mouth in the morning. Either way, when the hair is ready, it's going to go. I figure, I may as well take charge of this area of my life.

When I was a kid, we had a friend of the family (Gene) who was a barber. He had cut my hair from the time I was very, very young. He had a daughter who was my age. He bought and prepared a wig for me. A great gesture of generosity. Wigs are expensive. I am very grateful to Gene for this. I wore it. But I think that may have been a mistake. Because I tried to hide this symbol of my cancer, others around me tried to carry on the façade that all was normal along with me. It's funny. I set the stage and the expectation of response. When I needed more support and without knowing it, I told everyone that I didn't need support. I hid the reality, and we all pretended.

Folks who don't know you may look at you a little shocked when you lose your hair. Less so if you are a man, more so if you are a woman. But those who know you, even as an acquaintance will see your bald head as a symbol of what you are going through. It will serve as a catalyst to encourage them to build bonds with you. It's ok for you to need that support. The funny thing is, they will also feel a need to support you. I know you hear it from me often in this site, but the mutuality is important. It isn't a benefit to others for you to say that you can do it all. That robs them of the ability to give. So...sometimes being willing to receive is also a gift. Mutuality. We are created in a manner so that we have to depend on one another. The joy of relationships is part of the nature of God, and it appears in us. God is infinite, and we are not. But mutuality is important in our nature.

I'm not against wigs...or hats. Use them to enhance the joy of life. Or use them sometimes if you want to feel more normal. But don't let them interfere with developing the relationships that you need to get through these times. The support that people want to give you will amaze you. I am certainly amazed by the support given to me...and oh, so grateful. I am absolutely blessed.

I might also mention that over the years, I have known many, many women who have lost their hair as a result of chemotherapy. They have all been beautiful, physically and spiritually. It shows your pretty eyes, your lovely and delicate jaw structure, and your cheeks. I know you prefer hair, but you will remain feminine. Your hats, your earrings your make up and your clothes give you a chance to develop individuality and style in other ways. The loss of the hair, is a little loss of self (which I need to write a devotion about). But you can create yourself anew. And you will.

Having said all of this, I still prefer having hair. But this is one of the "gives and takes" of this disease. Don't miss the "gives" despite the "takes."

Be blessed.

When I was young, my father purchased a 1927 Model T Ford from my Grandfather Sams. I remember the car being in my Grandfather's barn for years before that. This car sat in the garage. It has never had interior seats or carpets within my memory. I remember when I was young, Dad or Mark would crank the handle in front of the grill to get the Model T running. Then we would ride around the yards and roads sitting on plywood or open springs on top of the gas tank or in the back seat. Our Model T didn't have a roof. There were just wooden timbers, sometimes covered by chicken wire on the top. The car has almost always been black. But on one occasion, my dad painted it maroon. On another, he painted it green. The Model T has always had black trim and running boards.

Dad is a great story teller. When we were little, he would tell us stories while we were on trips or while we were in bed. I remember him telling a story about a man with a Model T. He would drive it, and kids would run along the road and jump into the Model T as it went past. So many kids would jump on until they were hanging out the windows and were clinging onto the outside filling up the running boards. The were yelling at the driver, "Go faster, Go faster!" They all laughed and had a great time. My Dad would laugh as he told the story. We did, too.

My dad has bought and sold many, many vintage cars. My whole life I've known cars and restoration inside out from my father's constant hobby. Dad always restores these classics. Then (often to my disappointment), he sells them. He says that he enjoyed each, but that he really can't afford to keep the cars. The Model T is the only car that he has kept, and he has kept it for years and years. This is the one car that has always been here. But, until recently, he never restored it. Isn't that funny? That one, precious piece of all of my family's past has remained essentially unchanged and unrestored for more than 40 years. Dad has always planned to restore it. He just never did.

Dad is 68 years old now. Two months ago, he decided it was time and began to restore the Model T. That is a big event. He and my brother Mark have spent countless hours working on the car. It had stopped running. They have rebuilt the engine, ordered countless new parts, and have even restored the interior. So, now we sit on pin striped seats and the floors are carpeted. It has a roof. The car is nearly finished now. It looks as good as it did when it was new.

Dad never expected to sell the Model T. I expect that someday, Mark will inherit it. It was comfortable knowing it was always there. It was easy to take it for granted. There was always time tomorrow to take care of this thing that we all found precious; this thing that helps mark continuity in our family.

The Model T was never neglected, but the things that we wanted for it were never done. How easy it is to do that.

I'm glad that the Model T has finally been restored.

Oh, and by the way, today we drove it and myself, Julia, Mark, his wife Gail, Stephen, his wife Lisa, Stephen's 4 children, and my 3 children loaded up into the Model T and drove it through the fields at my father's farm and along the roads and there were so many kids in it that they were hanging out the windows and clinging to the running boards.

Be Blessed.

This blog is about me and my family and our journey with Hodgkin's Disease.

But I will be very disappointed if that is all that it is. I also want this web site to be about you.

If you are a cancer patient or the family member of a cancer patient, I hope that you will gain a little insight into what may lay ahead through my experiences. I hope to show that there is a lot of good in the world despite cancer!

We all have stories, we all have matters that we must overcome. That's why I tell my stories. To show that despite cancer, the story continues. (And do you know what? Even when things are difficult, even seem dire, you never know the end of the story while you are living it. Keep living your story fully! That is also what I mean about "Paint Your Moment.")

I have started this web site to help me keep the important matters in life in perspective and to share that with you. If anyone has questions or concerns about their own experiences, if you like, email me. I will try to respond quickly. I don't have all the answers, but I do have a fair amount of experience now. Also, make sure that you share your burdens with the people around you who love you. They are going to bear these hard times, anyway. It will be easier to do together.

So, an update about me.

I had my most recent CT scan on June 6. It showed several nodules through the chest. I'll omit the specific medical details. The largest of the nodules is 2 cm right now. That is not very large, so yahoo.

Dr. Leming has decided to not to try to cure my HD right now. Given the recurrences, he believes that the therapy could cause substantial harm without a corresponding likelihood of permanent remission. One of the biggest drives in treating HD (according to what I have read) is how to avoid damaging the patient as much as possible. So, we are going to try to manage the HD long term. We will let it grow a while, then treat it a while, then let it grow a while, then treat it a while. Treatments will include chemotherapy (maybe vincristine and cytoxan) along with an anti-body therapy called Rotuxomab (Rotuxan). Rotuxan targets CD-20 cells (a cell type that comprises a substantial part of the tumors involved in my kind of HD.) Dr. Leming feels that given the development of genetic courses of treatment, that it is likely that genetic therapies for my HD will be developed in the next 10 years or so. So, the plan is to maintain.

I like not having to have chemotherapy right now...duh. I'm trying to get stronger.

But I hate not working toward a cure. It is out of my character. Normally, I see a problem, and I attack it.

I think that may be a pride issue. I think that God may be telling me that I am going to do things His way, on His schedule. I think He's also telling me that I can't do things on my own. I have to rely on others. That is a very difficult lesson.

So, here I am. I may be writing this blog for a long time.

But, what worthwhile course do any of us set that is apart from God's will?