June 2007 Archives

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?