Good blood work results

I saw the doctor on Wednesday after having some blood work done. The CT scan back in March showed that tumor on my spine was stable, which is normal that soon after treatment, and that a tiny spot on my right lung that had grown slightly. Also, the tumor markers in my blood fell sharply, after having risen steadily the last few months. This week's tests found my CEA down to 2.0 which is as low as it's been since August, and a good sign that the treatment had some significant effect on the tumor.

This is good news. We had talked about possibly starting chemotherapy, if the numbers had started increasing. Now, we will wait until after school is over in early June before doing a PET scan to see where things are at that point. I'm glad to be able to finish the school year and hopefully get some work done on my dissertation these next few weeks.

Thanks for you continued prayers and words of encouragement!

Unexpected good news

About halfway through treatment, despite being told that the treatment center would get preapproval from my insurance company, I was informed that my claim for proton therapy was being denied. Blue Cross and Blue Shield claimed that proton therapy was experimental for recurrent rectal cancer and not medically necessary. Needless to say, this was quite frustrating and upsetting as it would result in thousands of dollars in medical expenses that I would have to pay out of pocket.

I've spent the last two months dealing with the insurance company, the cancer center and patient advocacy foundations, with the help of my sister Janet. Down to the final external appeal, we had both become increasingly pessimistic about the chances that the denial would be overturned. While, my doctors insisted that the treatment was not experimental and was definitely necessary, it seemed like things weren't coming together to make our case as strong as possible. On Sunday, Janet and I both lamented that it seemed like the appeal was going no where.

However, I received a call today from the proton center telling me that the denial had been overturned, and that my treatment would be covered! The woman I spoke to sounded as shocked as I was.

Obviously, I am thankful for the external review board's decision. I haven't seen the official paperwork yet, but it seems that my doctors were vindicated in the end. However, I cannot help but see the Lord's hand in this circumstance and I want to thank all of you for your prayers over the last couple of months. This is a big burden of worry off of my shoulders and I couldn't be more thankful.

Follow up visit

I saw the doctor for a follow up today. The tumors near and on my spine are stable, which I guess is normal with radiation treatment. Also, the tumor markers declined significantly, after going up quite a bit the last three times. To continue to monitor these tumors, along with another small spot that we're following, we've decided to do another blood test in April and a CT in May. Hopefully, things will hold steady or shows signs of improvement at that point.

I'm glad to have at least another month and spring break before starting treatment again. I'm presenting at the American Educational Research Association conference in Philadelphia over Spring break. I'm glad not to have treatment stop me from doing it the way it has the two other times I've had the chance to present at a conference.

On the insurance front, we're still waiting to hear about the external appeal that the treatment center filed in my behalf. I'm not terribly hopeful that the denial will get overturned, but I guess there is still the chance if a miracle.

Thank you for your prayers and support these last couple months as I went through treatment. It means a lot.

Finished with Treatment

It's been a long five and a half weeks, but I am finally finished with radiation treatment. The side effects weren't too bad. There is a sunburn-like spot on my lower back, I've been pretty tired and I've had some mild nausea, but overall things have gone pretty well. I'm going to have scans in early March. It will probably be too soon to see any major changes on my spine, but it will allow us to make sure that there are no other spots of concern. At that point my doctor and I will discuss the possibility of doing a round of preventative chemo to try and extend the time between recurrences. The drawback is that I would be spending a good chunk of that interval on chemo. I didn't do that well on chemotherapy a couple of years ago, so that will be a difficult decision that we will make.

On an equally unpleasant note, I was notified recently that, despite being told that the treatment center would get pre-approval from the insurance company, they had never received any approval and the insurance company had decided to deny my claim. In fact, they had processed an initial appeal of the denial on my behalf and been rejected before I was told anything. Needless to say, I wasn't happy.

This is the first time that I have had to deal with an insurance issue like this and it is quite nerve wracking. Janet has used her connections with Livestrong to start getting us some support from cancer advocacy groups. Also, the cancer center will help me with a couple more rounds of appeals that are available to me. I'm hopeful that we may succeed, though the prospect of being on the hook for tens of thousands of dollars in medical bills is daunting. My guess is that it will be a couple of months before all the appeals are exhausted. The most frustrating part is that I asked about it up front, was told not to worry and didn't know there was a problem until I was more than halfway through treatment.

Thank you all for your prayers and support. They have meant a lot. I would appreciate your continued prayers over the next few weeks as the scan comes in early March, and as we continue to deal with the insurance issues. Now, I am off to bed, as one of the side effects that will likely linger for a few weeks is fatigue. Thankfully, I at least won't be heading to treatment at 7:45 pm every weeknight any longer, so I can hopefully get more sleep!

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