Halfway There

Last night, I completed my 14th day of radiation treatments. So far the side effects haven't been too bad, except I am feeling more run down and have a little more nausea. I'm hopeful that it won't get too much worse over the next 14 days.

Thank you for you continued prayers and support. They mean a lot!

5 down, 23 to go

I've finished my first five days of proton beam radiation treatment and oral chemotherapy. With breakfast and dinner, I take 300 mg of Xeloda, an oral chemotherapy drug, which breaks down into the equivalent of 5-FU, the drug I received two years ago through a pump. So far, other than some mild nausea and fatigue I haven't any serious side effects. I've been able to eat my regular diet without any major problems.

Each night at 8:30 pm, I have traveled to the CDH Proton Center in Warrenville, IL. I lay on my stomach on a table for about 30 minutes. Most of that time is spent making sure I am in the correct position, using lasers and x-ray images. Then, for about two minutes the beam is focused on my tumor, and because protons have mass, unlike the photons used in regular radiation, the radiation stops at the edges of my tumor rather than passing all the way through my body. This should reduce the impact to my healthy tissue.

Unfortunately, the base of my spine is in the treatment field and there is a reasonable chance that I could experience nerve damage some time after treatment is completed. This would be unfortunate, but as my doctor said, I'm already having pain, so leaving the tumor untreated would result in essentially a 100% chance of damage to the nerves. This could result in symptoms like pain, numbness or tingling depending on which nerves were damaged. Despite these possible side effects, I still believe that this treatment is the right course given my current situation. I appreciate the straightforward and honest way that my doctor, Dr. McGee, has approached my treatment plan and the possible side effects.

I now get two days off of chemo and radiation! I'm looking forward to announcing a Wheaton College Women's Basketball game tomorrow afternoon and watching the Patriots play the Colts. Then, on Monday it will be back to treatment again, as I have 23 days left of my 28-day treatment schedule.

Thanks as always for your prayers and support. I have felt the Lord supporting me this week in tangible ways, and I know that there are a lot of people praying for me. Thank you!

Tomorrow

It's very cold right now in Chicago. In fact, school has already been canceled for tomorrow, because wind chills are expected to dip into the -40s. That means I will be at home for my first day of chemo and radiation before heading to the CDH Proton Center in the evening. This week I will have my radiation treatment at 9 pm, which is the latest they make appointments. Next Tuesday, my appointments will switch to a more reasonable 6:15 pm, which will be good.

In addition, starting tomorrow I will take Xeloda, an oral chemotherapy drug, morning and evening on the days I have radiation treatments. The chemo is supposed to make the tumor more sensitive to the radiation.

As always, thanks for your prayers and support. I had a great time at home with my family for Christmas and even got to enjoy a Patriots game with my brother, Mark. I'm hopeful that the next few weeks won't be too bad and that the treatment will be effective. I'll keep you all updated with how things are going when I can.

Steve

Another Journey

I probably shouldn't allow this blog to go silent, because I seem to only ever post bad news. Anyway, I wanted you all to know what has been happening the last few weeks. My wound that had become infected after my surgery finally healed over in the middle of November, about the same time that I finally got approved to start working on my doctoral dissertation. Those were both items that took way too long to accomplish, but I was glad to finally have them done and out of the way. Of course, get candidacy status only meant that I now had the privilege to write a dissertation! That is going to be quite a long process, too.

Unfortunately, it looks like I have another journey to embark on with my health as well. Just before Thanksgiving, my back began to hurt again. I had my regular 3-month checkup two weeks ago and the CT scan showed that tumor is continuing to grow next to my sacrum spine. We had treated a tumor on the spine with radiation in May, and that tumor is smaller. This growth is in the soft tissue behind the bone. I had a PET scan and it did not show any other areas of concern, so we are going to try and treat the tumor locally.

Since I already had radiation treatment in the area, my doctors are recommending proton beam radiation therapy, which should reduce damage to the areas that were already treated. In addition, I am going to try an oral chemotherapy treatment that is supposed to sensitize the tumor to the radiation. I took this drug, along with others, in 2011 and I did not do very well. We’ll see how it goes, and may drop it if I have a bad reaction again.

It’s going to take two or three weeks to get the treatment ready, so it will probably be early January before I start. It is my plan to work throughout my treatment. I don’t know my schedule yet, so I do not know whether I will have to be out for the actual treatment, which will be five days a week for 4 weeks. My doctor is hopeful that I will be in remission at the end of the four weeks. At that point, we will discuss whether starting a round of preventative chemotherapy would be a good idea.

Obviously, this isn’t great news, but I am glad that the cancer once again appears to only be active in one spot. I’m also happy that I will be able to go home to Maine to see my family, before I start treatment. At this time, I don’t want for anything, because I have such supportive and generous family, friends and colleagues.

Thank you for all the ways that you have supported me over the last six years. It was this time six years ago that I knew something was wrong and that I needed to get to a doctor soon. All along the way, I have been supported by so many people with your generosity, words and acts of encouragement and your prayers. I hear regularly from my parents and others about how many people are praying for me on a daily basis. Thank you so much, all of you!

Long awaited update

Okay, as some of you have pointed out, I've been pretty bad about updating the blog lately. Sorry about that! I had a couple of appointments today and thought it would be a good time to let you all know how things are going.

One of my appointments was with the radiation oncologist to look at my three month follow up CT scan. She was very happy with how it looks. The size hasn't changed much since May, but she sees signs that the tumor is dead. Unless I have dramatically increased pain (I still have some lingering pain) or other signs that something is wrong, she doesn't think that we need to follow that spot in particular. In addition, she looked through the rest of the CT report and didn't see anything of concern. I see the medical oncologist at the end of the month to see what he thinks the best plan is in terms of monitoring me on a more global basis.

My other appointment was with the wound care nurse and one of my surgeons. Five weeks ago, I had surgery to clean out an infection. It left me with a large open wound that needs to heal from the inside out. I have been using a wound vac the last five weeks that is supposed to speed healing, but lately it hasn't been as effective as we hoped. So today we decided to stop using that machine and opt for regular dressing changes two or three times a day. Progress was really slow on the vac, so while I'm not too hopeful that it will heal quickly, it can't go much slower, and I don't have to carry the vac everywhere. It should also be easier for starting school a week from Monday. I can't believe the summer is almost over!

Anyway, thanks for all your continuing prayers. I will update again at least when I meet with the medical oncologist at the end of the month.

Update

Sorry it's been a while since I updated the blog. I've been feeling better the last few weeks, but a week after the drain fell out part of my incision began leaking fluid in relatively large amounts. We've tried managing it for the last three weeks, while waiting for it to heal, but it hasn't improved. As a result, I am having a surgical procedure today that will hopefully help speed the healing process.

It's been kind of a frustrating process these last two months. I'm ready to be back to normal, but my body just won't cooperate. Mom is still here helping me manage these issues. She's been gone from Maine a long time. I know Daniel and Lillian are looking forward to the time when Nana can come home. I really appreciate all her help these last two and a half months.

Thank you for your prayers and support. Please pray that this procedure will be without complications and that my body will finally be healed soon. Thanks, Steve

Slow improvement

I've had a string of some pretty good days in a row lately. My nausea seems to be a thing of the past and I am getting my appetite and strength back. I did develop a wound issue with my incision, but it seems to be manageable. Hopefully, it will heal quickly and I can get back to normal.

Thanks for all of your prayers.