January 2009


Thursday was supposed to be lab work, followed by a consultation with a surgeon about the thyroid issue, and ending the afternoon at the cancer center with an infusion (chemo by IV). But that’s not how it worked out. First, my lab orders had expired. The blood test had to wait until after seeing the surgeon.  This would add at least an hour of waiting for lab results before I could get the chemo.

After nearly an hour in the exam room… Ken checked the halls for any sign of the doctor or anyone for that matter. He found him chatting in the hall. The surgeon had confused my records with another patient with a similar name and thought my appointment was a mistake. It certainly was a waste of time. He hadn’t consulted with my oncologist and couldn’t make a recommendation. The only thing we learned was there was plenty of time to consider surgery – as much as 3 months. My guess was he needed to know more about my prognosis to determine if it was worthwhile.

While trying to remain as positive as possible, it’s rough being reminded of the poor survival rates of this disease. I was upsetting to wait an hour only to face this. Then it was back to the lab for another long wait. Waiting for the blood draw… then waiting for the results… then waiting to be called to start an IV in the infusion center.

Ken went and found us soemthing for lunch. My spirits were hammered and food was overdue. Then we learned the lab equipment was down. The lab work would need to be done at the hospital nearby… and oh yes… another hour or more of waiting. This had become another disasterous day at the medical center.

A tired, frazzled, and cold patient does not make for an easy time of starting as IV. Five or six unsuccessful sticks, a sedative, and a 15 minute break later chemo finally began. It was nearly 7pm when we finally made it home.
My next appointment with Dr B is Feb. 2. I don’t know if I’ll ask about rescheduling with the surgeon until then. I need a break from it for a bit. Besides, I have several calls to make to sort out medical insurance problems. I’ll focus my energy there first.

Dec. 17, 2008

After the CT, an ultrasound was scheduled to learn more about the nodules. This provided some useful information about their size and location, but also other ambiguous information. The next stop was the Endocrinologist. That involved a needle biopsy – actually several of them. And, once again, ambiguous results. This is not unusual for thyroid issues.

The next step is to make a decision to watch it by repeating the ultrasound or to biopsy it by removing it surgically. Next we will meet with a surgeon to learn more and then make a decision. I am not all that worried. The chance it is cancerous is small and, besides, thyroid cancers are not a big deal all things considered. They grow slowly and can be easily monitored and managed.  I have a brain MRI scheduled for next week and the week after, my routine CT for chest, abdomen, etc.

Based on how I am feeling, I think the medications are effective and I am doing well. Of course, it’s always great to get confirmation. The side effects are lessening. The hair loss has slowed to a normal rate plus I’ve become accustomed to having less of it. I am managing infections better and scarcely have rashes. As I try to do more, I notice my fatigue more. I simply can’t do as much as I used to. But, I am hoping that excercise will help to turn that around.

I still worry about each new ache or pain, but this comes with the territory. Dr B and nurse Erin,  are patient and supportive.

This week, I am on vacation. Ken and I are living on board a boat docked at Shelter Island and learning to sail it – all 42′ of it. It’s intimdating, but exciting. The weather is lousy. The rain doesn’t keep us from going out except when it’s too heavy to see. On deck, we get cold and wet with the limited gear we have. We intend to be fairweather sailors and didn’t plan on getting foul-weather gear. We now have bright yellow slickers but nothing to keep our feet dry.

Preliminary results of the PET scan indicate my medications are still working. Yeah!!! This is a HUGE relief. For now, I will continue on Tarceva and the trial medication.

I often get questions about the differences between a PET and CT scan. The simplest way I can explain it – as I understand it –  is PET scans indicate tumor activity while CT scans are a series of xrays that show shapes of organs as well as any abnormal objects. These can indicate a tumor, infection, or scar tissue, etc. The abnormalities are compared to sites of high metabolic activity on a PET scan to determine if any might have cancerous activity. ANd, BTW… a CT scan and a CAT scan are the same thing – Computed Tomography. PET stands for Positron Emission Tomography.

Monday, January 5th we saw Dr B for the test results and my routine exam. The brain MRI from the 22nd was clear. Still no explanation for the ache near my ear… but at least it doesn’t look like anything serious. Now for the not-so-good news. My CT results didn’t look good, at least the radiologist’s report was not good. It indicated the tumor is progressing – not a lot – but any progression is not good and reason to discontinue my current treatment. It’s possible it is an error. I will have a PET scan to get more information. The CT will also be formally reviewed for clarification. The PET scan is tomorrow morning. The two scans will be compared. I should know more by Friday.

I expected and hoped to get at least at year and a half from Tarceva and possibly more. It’s been very effective so far. My symptoms remain good. Hopefully, the PET scan will give us great news.