If you are reading this for the first time and want to hear the whole story, look under "BLOG ARCHIVE" on the right. Read the oldest blog first, starting with "The Diagnosis" in January 2009 (click on it) and continuing down. The blog you see below is the most recent and you want to read it last.
Wednesday, September 16, 2009
Today is the anniversary of my diagnosis. I can honestly say that I didn’t think I’d make it this far. I don’t feel in a celebratory mood, more solemn and reflective. I began the day by going to Mass. Needless to say God has guided me through this and I had to give thanks. The daily Mass is offered in the chapel which is much smaller than the church where Sunday Mass is offered. It provides a much more personal experience which suited me very well. I don’t think it was coincidental that three very meaningful things occurred. As I was waiting for the Mass to begin a lady walked in and sat down several seats away from me. I overheard her tell the lady next to her, through tears, that her son died at three o’clock this morning. I thought of my mother. In his homily, the priest said that we should give thanks to God. He said that if we are wondering what we should give thanks for, we should be thankful for being here today. We should be thankful for being able to walk and to breathe. How appropriate is that for me? The third thing was that my angel was there. The priest welcomed Sr. Sylvia back. Apparently she has been away for a while and today was her first day back. Nice timing Sister. Sr. Sylvia is my angel because I believe that if I survive long term it will be a miracle and Sr. Sylvia delivered that miracle. If you haven’t read that story you can see it in my January 26th post. After Mass I brought flowers to the people at my oncologist’s office to thank them for all they’ve done, especially Dr. George who has kept me alive. I brought flowers to my mother who has provided unending optimism throughout the past year. I brought a planter (she doesn’t like flowers) to Terry who has carried me, almost literally at times, through the past year. I want to thank my children, Heather and AJ for filling my days with love. And I’d like to thank all of you for your support, encouragement and prayers. Not much more than a week ago I feared that I would mark this one year anniversary with bad PET scan results, putting a damper on it. Reaching this point and being blessed with positive results as well gives me hope for making it further. _________________________________________
Saturday, September 12, 2009
Today is the anniversary of the end of the EC battle of Richard Martin. You may recall from a previous post that Richard passed away on the day I was getting the CAT scan that revealed my disease. His daughter Rolinda feels a bond to others who are fighting this battle and she has been following my blog and providing much appreciated support. Richard and Rolinda have been an inspiration to me. Please pray for them, especially Rolinda who will have a difficult time today. Remember the good times Rolinda. And thank you. ___________________________________
Tuesday, September 8, 2009
Today I received my 20th chemo treatment. I also received the results from the PET scan performed on August 31st. I said that I was content to wait for the results rather than call the doctor last week but I have to confess that I was concerned. I expected bad news because I’ve been experiencing strange pains and I know that sooner or later this beast will reappear in an ugly way. I am happy and grateful to report that my fears did not materialize. It was a good report. There was improvement in every aspect of the report. For those that like details they follow. For my own satisfaction I went back and re-read the last three PET scan results to refresh my own memory of the progress. I’ll give you the details by comparing this report with the previous three. As a refresher, PET scans involve an injection of a substance that is like a radioactive sugar. Because cancer cells metabolize sugar very quickly, the scan picks up “hypermetabolic activity” where cancer is present. There is also a CT scan (commonly known as a “CAT” scan) done almost simultaneously so they can see things that may not be hypermetabolic. The hypermetabolic activity, in other words how active the cancer is, is measured by how much of the glucose (sugar) is absorbed by the cancer. The measurement is expressed as “Standard Uptake Value”, referred to as SUV. ESOPHAGUS - At the time of the first PET scan in October ‘08 there was hypermetabolic activity in the esophagus with an SUV of 8.9. The second report in January ‘09 indicated that activity could not be identified here. The May ‘09 report and the most recent report make no mention of the esophagus, seeming to indicate that no activity is seen. LYMPH NODES - At the time of the first PET scan in October ‘08 there was hypermetabolic activity in a lymph node near the esophagus with an SUV of 6.2 and one near the neck with an SUV of 3.1. With the January ‘09 scan they were both “not definitively identified”. There was no mention of these nodes in the May ‘09 or August ‘09 scan reports. LUNGS - Originally, with the first scan, there was a mass in the left upper lobe measuring 3.5 cm (diameter) with an SUV of 10.5. By January it had shrunk to 2.0 cm with an SUV of 3.2. By May it appeared that it had shrunk further however the dimensions were not clear. The SUV was down to 1.6. With the most recent scan the dimensions were given as 1.0 x 1.4 which is smaller than in October ‘08 or January ‘09. It also stated that this was unchanged from May ‘09 which lends some clarity to that report. This report indicated that the lung mass was “not associated with hypermetabolic activity”. Dr George said this probably meant that the cells were dead, obviously a good thing. LIVER - This has been and still is the most problematic area although there has been tremendous improvement. Originally, the only information given about the liver was “Nearly the entire liver is involved with hepatic metastatic disease with mean SUVs ranging up to 16.0”. It also stated that the impression was “extensive metastasis to the liver”. The second report, in January ‘09 stated there was “decreased metastatic disease” with mean SUVs of 6.6. It reported “dramatic interval improvement but that residual disease remains”. By May of this year the SUV was down to 4.7 noting that some of it may be related to “body habitus” which I believe means that my body may be predisposed to hypermetabolic liver activity. It stated that “residual disease cannot be ruled out”. With the most recent scan SUV was down to 4.2 and the report stated that it is “likely related to the patient’s body habitus”. The dimensions of the lesions cannot be determined due to irregular borders but the overall impression was “decreased as compared to the prior study” and that metastatic metabolic activity “could not be excluded”. On my last blood test, taken on August 17th, I noticed there was a reading given for CEA (carcinoembryonic antigen) which had never been reported before. CEA is a protein that appears in the blood of patients with some forms of cancer. My understanding is that it is not reliable for esophageal cancer so not given too much attention. That being said, Dr. George told me something I did not know. When I was originally diagnosed, a blood test was done in the hospital and the CEA was over 2,000. With the August 17th test it was down to 3.7. Normal should be less than 5 for a smoker and less than 2.5 for a non-smoker. I did smoke more than 24 years ago so I don’t know if I’m considered a smoker or a non-smoker but either way it’s a dramatic improvement, reliable or not. The blood tests done with each treatment also continue to indicate good liver function. For other patients who may want to know and as reminder since I’ve given this information before, the drugs I receive are taxotere, cisplatin, and 5FU. The 5FU is “boosted” by fusilev, a substitute for leucovorin. Needless to say the results have been good for which I am extremely grateful and pleased. But I am still realistic. I know that I am not cured. This disease does not go away. It’s very difficult to get Dr. George to say anything negative but she did acknowledge that the cancer is likely to flare up again. She said that was not likely to happen in the next three months. Is that encouraging? I interpolated “that sounds like it is likely to occur within the next year” and she reluctantly agreed. But many patients do not respond to the chemotherapy. I have. Many do not survive more than several months with my kind of diagnosis. I have. Remember that long term survival would be a true miracle. But I also realize that the miracle, if it is to occur, will include improvement of the type I have been blessed with. Treatments will continue with 3 week cycles for now. That seems to be a happy medium between fighting the disease and minimizing side effects. Thank you for all the prayers. I truly believe they are helping. Carry on. I will. __________________________________________