Tuesday, October 9, 2012

Update Two

In a surprise move, Dr. Tan called me today. The gist of it is that he told me not to panic yet. He said not to worry about the positive test result unless it happens a second or third time in a row...provided that my other tests remain normal and my symptoms don't worsen. Even at that, his next move is to put me on Tasigna when Gleevec has become ineffective.

I told Dr. Tan that his call meant a lot to me and I really appreciated it. He repeated that I'm to get retested in three months. Well, because of scheduling conflicts and the normal two weeks it takes to get this test back, I really only have two months to wait; it's been a month since the last blood draw.

I doubt I have anything new to report for two months...at least I hope I don't!!!

Thank you again for all your comments, emails, calls, and prayers!!!

Monday, October 8, 2012

Update

Despite knowing that Dr. Tan would be swamped today after being gone last week, I still showed up at his office at 8 am. He wasn't going to be in until 9 they said, so I talked to the nurse practitioner again. She said she hadn't been able to talk to Dr. Tan yet but would definitely call me after doing so. She told me to try not to worry. So, I headed off for South Carolina to meet our daughter coming home from Afghanistan.

Just after lunch time the nurse called. Relaying the message from Dr. Tan, she said that there isn't much they can do right now but monitor the cancer. As long as my white blood count stays normal we are to be content. If it goes up, then that is trouble, bad trouble. As in real bad trouble.

I was also told that if I have any changes in symptoms to call them right away. Well, can we say paranoid?! Every time I sneeze or cough I'm going to wonder if that is a change!!

So, they had me change my six month bloodwork and one year doctor visit to a three month check and visit.

My false positive theory was just hope in the wind. The test measures the amount of cancer cells. It doesn't just say positive or negative. The good thing is that my measurement was log 12 when I was first diagnosed. Then it steadily went down to log zero. Now it is back up to log three.

Well, that is all I know for now. Thank you for the kind comments, emails, and especially the prayers. I'll try to not let this thing preoccupy my mind but I know that if it goes to the next step, it will get ugly in a hurry. Thank you again!!

Saturday, October 6, 2012

CHANGES

clip_image002Even though I’m not writing the blog regularly any longer, I still write after my oncologist visits to give you the latest. I had my latest oncologist appointment yesterday (Friday).

A week before yesterday’s appointment, the oncologist’s office called and said that Dr. Tan would be out of the office on the day of my appointment. They offered to reschedule me or I could see his Nurse Practitioner. Knowing that I’d be gone the following week to get our daughter from the airport, coming back from Afghanistan, I opted for the Nurse Practitioner.

I arrived at the oncologist’s office early as always and was called back early. The Nurse Practitioner greeted me and then told me that everything looked great on my blood work, other than the stubborn anemia, etc. She asked if I had any questions. I told her that I had three. The first question was that Dr. Tan always gives me a copy of my results; I asked if I could have a copy of these results. She said I could have the copy she had in her hand. She then proceeded to answer my other two questions when I noticed that the BCR-ABL test, the cancer test, was not there. I asked her about it. She checked the file and then the computer. She said the computer shows that the test was performed but there wasn’t a copy of the test result in the computer. She excused herself and said she’d be right back. She returned to say that the lab was resending the test result and she’d have it in a minute. She left the room again.

This time she came back in with a different look on her face. She said that my test was positive: The cancer is back. The nurse practitioner said that because this test result just got to the office, Dr. Tan had not seen it yet. She said that she will discuss it with him Monday morning and they will call me with any treatment plan changes. She anticipated that Dr. Tan would want to do a bone biopsy. I groaned. She said she understood.

I’ve had an uneasy feeling about this test result for the past couple of weeks. Yet, that isn’t too uncommon; I often get an uncomfortable feeling just walking into any doctor's office!! In this case though, there is just something about facing the cancer question that is especially unsettling.

After my cancer went into remission, Dr. Tan told me that my cancer would likely go active again in about ten years or so. Hopefully by then there would be an effective treatment available for me at that time. Well, unfortunately, ten years turned into one year: I was in remission for only one year.

The good news is that my White Blood Count (WBC) is low. I’ll be in trouble when the cancer causes the WBC count to go high. At that point, I’ll have to consider a bone marrow transplant and all those things that I previously said I wouldn’t undergo. We’ll see though. A bone marrow transplant could be staring me in the face real soon and thus I might have a change of heart!!

I just so happened to have lunch scheduled with my older brother after my appointment. After emailing Eileen at work and contacting the kids about my results, I met my oldest brother for lunch. I told him the news. He offered his bone marrow. I told him that since he just had his gall bladder out, I don’t want bone marrow from someone who doesn’t have a gall bladder!! We laughed. While a bone marrow transplant may be staring at me, I’m not going to think about it too much until I have to.

So, I won’t know much else until Monday. Even so, I’ll likely be on the road before Dr. Tan calls. I’m not sure I’ll be able to blog while gone. I may be gone all week. When I can, I’ll update you.

By the way, I waited to post this until after our daughter, who is in the process of returning from Afghanistan, got a chance to get the news.