Dear Friends and Family,
It’s been a few weeks since I’ve provided a substantial update, and now seems the time to get you caught up. The last few weeks have included many additional tests and consultations, as we’ve tried to better understand that state of the disease and our options. One of the diagnostic tests was a PET-Scan.
A PET-Scan combines two scans, CT-Scan and a nuclear medicine scan. It is to identify areas of probable cancer activity. It is an expensive test, and not part of the standard of care treatment for sarcoma cancers. As a result, when our doctor wanted me to have one of these scans, he needed special permission from the insurance company (or our permission to pay for the test ourselves). Our insurance company has been very good about providing the care that the doctors have prescribed, and this is the first time we needed permission to go outside the box. It took a few weeks, but the permission was granted. So, on Thursday the 16th, I had a head-to-toe PET-Scan. In addition to the tumors we already had identified, it revealed several more likely tumors, including in the right shin, right thigh, right hip, right arm, lymph system near the heart, and around the T2 vertebrae. No tumors were found in the lungs are other “major organs.” A rough, off-the-top-off-my-head count suggests around 16 possible tumors.
Of these, the possible tumor at the T2 caused the oncologist the most alarm. He suggested that if there was a tumor on, in or near the spine, then while we could negotiate other treatment choices, we could not negotiate this one. If it was what it could be, then he felt that treatment was required. Since the PET-Scan didn’t provide the necessary details, he immediately sent me in for another MRI.
The MRI results indicated that the cancer is growing within the T2 vertebrae. There is concern that if it continues to grow then it could either directly infringe upon the spinal cord, or so weaken the structure of the bone that a break or collapse could occur, also endangering the spinal cord. The good news is that the vertebrae is still structurally intact, so the doctors advise fighting this skirmish with radiation.
Radiation will be used to treat the T1, T2, and T3 vertebrae, with the hoped outcome of killing the cancer cells within the bone. Five treatments, one a day for five days, will begin on Monday the 27th. (In contrast, the radiation treatment on my leg was around 36 treatments over 6-7 weeks.) The most common, adverse side-effect is burning of the esophagus, which means swallowing will be painful and difficult until it heals. Rarely, the effects linger beyond, after the burn has healed.
The radiation treatment requires that I be in the same position and place for each of the treatments. To accomplish this, a mesh mold of my head and shoulders was made. Once that mask is on and strapped into place, I am essentially immobile from the shoulders up. Even swallowing is difficult when the mask is in place.
Life Gets Simpler
Sometimes, life can be pretty complicated. However, at other times, it boils down and become more and more simple. Such is the case for me right now. My goals for each day are much simpler than they used to be.
- Eat breakfast, lunch and dinner.
- Stay hydrated.
- Commune with God.
- Commune with Lu.
- Stay up until 9:00 PM.
Of course, there are other goals for each day, involving work, appointments and procedures. But the above 5 simple goals apply to every day, and sometimes some of these are a challenge.
Even though we have everything to be thankful for, knowing that our future is bright and secure in Christ, sometimes it is still hard to be thankful. Sad and even thoughts of complaints are easier. This morning, as I’ve written this update, has been one of those times. I’ve had to sit back and be reminded of some of the blessings that God offers today, not just in days to come. Would you join me in expressing thanks:
- For Lu, who has provided superb and patient care.
- For the ability to continue many of ministry activities and some of my work activities.
- For being able to watch Matt’s conducting concert last night via Skype.
- For technology such as cell phones and Skype that help us stay in closer contact with family.
- That Bethany has the opportunity to go to Italy for 4-5 weeks this summer for an Oberlin-sponsored music event.
- That the “major organs” still appear free of disease.
- Please pray that the radiation treatment will have the desired effect of killing the cancer and stabilizing the bone.
- Please pray for minimal damage and discomfort related to radiation’s effect on the esophagus.
- Please pray for favor upon a disability insurance claim that we’ll be working on in the days to come.
- Please pray for daily success with the five goals described above.
- Please pray for God to heal.
Thank you for your continued expressions of love, prayer and concern.
Jeff and Lu