Sometimes You Gotta Trust

Greetings All,


As I alluded before, the clean scan was certainly not the end of the journey, nor is it the end of Struggleville. A lot has happened in 2 weeks since I last posted and we have had to make some tough decisions.

The Thursday after I got my results I had a follow up appointment with the Urologist. This was to follow up on the bleeding I had during treatment. There is an extremely comical, yet uncomfortable, and exceptionally visual story about avoiding a Cystoscopy (sending a camera into your bladder) that I will not share here. I've probably said enough already. However, they said they did find some abnormal cells in my urine sample that they sent off for more testing. I asked the urologist what kind of abnormal cells and he said they would check for bladder cancers and other cancers of the urinary track. I asked if that would show up on my PET scan and he said not necessarily. So, this Wednesday I have to call for my results on my "abnormal" cells. To be honest I'm not really worried about the results. I'm sure everything is fine and I'm not surprised going through chemo and all that I would have some abnormal cells.

The following Monday I had my chest port removed. What a relief!!! I still have a bandage and stitches right now so it's still a little like having it in but I'm glad it is out. Strangely enough I had another interesting story with the port removal. I took the whole day off. I figured being cut open warranted a day free from the stresses of work. Our daughter had a doctor's appointment so I was going to take our son to school. He got dressed, we brushed his teeth, got his coat and shoes on, and we are just about to leave. I bend over to tie my shoes and I feel on drip on my stomach. My first thought is I probably have a little stream of blood coming down from my incision. I happened to be wearing a t-shirt with a long sleeve shirt over that at the time so I took off my long sleeve shirt to survey the damage. Imagine my surprise when my t-shirt literally looked like someone had shot me in the chest. I had soaked a good 2 inch circle in my shirt. At this point I seriously considered just changing my shirt and taking our son to school, but I reconsidered, called my dad to take our son to school, and called the hospital. Their sage advice was to apply direct pressure for 15 minutes, change the bandage, and if I hadn't stopped hemorrhaging by then to call back. By the time I got off the phone with them I had stopped bleeding so I changed the bandage and went on my way. I never did have another incident but it brought a little excitement to my afternoon.

Finally, the big news of the day. Last Wednesday I had my follow up appointment with my Radiologist. The standard course of treatment for Hodgkin’s is either 12 treatments of chemo and no radiation or 8 chemo treatments and then radiation. I had my 8 treatments and gotten a clean scan so I wanted to ask the radiologist whether radiation was necessary. The problem is this:

I have a 4%-6% better chance of reoccurrence if I don't do radiation and just do the chemo. However, I also have the chance of developing secondary cancers from the radiation some 10-20 years later. I have read a lot of other people's stories of treatment and it seems more and more that people are not doing radiation, but they are also getting more chemo treatments than I did. I asked the radiologist if the PET came back clean what exactly are we treating? He said a PET scan will only pick up groups of cancer cells that are greater than 5-7 mm large. Random active cancer cells could still exist and not be seen on the PET. With the area that would be treated there is also some risk for lung scarring, heart scarring, and irritation to the esophagus and spine. Did I mention I could get cancer from treating cancer? I thought so. So I did a lot of thinking and a lot of praying by myself and with others. In my mind in came down to this: either way I have to trust. I either trust now that the chemo did its job and the cancer is completely gone or I trust that by going through radiation I won't develop a second cancer later. Both decisions reminded me that I won't feel like things are completely over for a while.

After a lot of agonizing I have decided not to pursue radiation treatment. I feel like this is the decision I am supposed to make and I am going to trust in the here and now that the cancer is gone and that it is time to start to move on. Things could change tomorrow and I will still know that this was the decision I was supposed to make at this time. It's crazy but I can't remember ever having to make a decision quite like this. I guess I've had a lot of unique experiences in the last 4 months. Experiences that I haven't even begun to see the significance of yet. I am also trusting that as the days pass I will gain a small understanding of why I was meant to go through this and how I'm supposed to use it going forward.

So my friends, the journey continues and we struggle on. I hope that in whatever struggles you are going through you take some solace in the fact that whatever you face you are not alone. Cancer sucks, and a lot of things we face in life suck. I wish I could remove what sucks but I can't. But if you are looking, between what sucks you find a lot of beauty, friendship, grace, love, and other things worth struggling for. So don't give up, sometimes you just gotta trust that things will get better..........and sooner rather than later.

Peace,
Ben