Jean Pasco Cancer

January 11, 2008

Why am I not surprised?

That many doctors go on vacation in early January?? I’ve run into this more than once, but since none of them told me this when we talked last week or made other arrangements for me, I take it to mean that I’m not an emergency case and can wait until they get back to make any decisions. Sounds logical to me.

I have a list of doctors that I needed to speak with this week. It’s intimidating to look at your “to do” list on Monday morning and have the first 5 line items be
Call Dr. Nauta
Call Dr. Karian
Call Dr. Abner
Call Dr. LaMont
Call Dr. Lange

Needless to say I was not in a hurry to make ANY of these calls and I procrastinated until Tuesday. (On Monday I went out and bought myself an appointment calendar, figuring I will need to start keeping track of all these things and I always forget to update my Yahoo calendar, I do best with pen and paper. Plus it was 75% off and it was The New Yorker Dogs calendar, with the first cartoon being a picture of a man in a hotel room on the phone saying “That’s nice honey, now would you put the dog on?” Of course in order for this to be realistic, it would be me in the hotel room asking to talk to Cooper and not Pat).

Getting back on track - I immediately assigned myself one phone call per day, for the rest of the week so that I did not feel quite as overwhelmed. And I started with the easy one - Dr. LaMont who is my gastro and whom I needed refills from so it wasn’t really related to my recurrence. I did fill him in on the latest, just in case he had any thoughts about something that could be done to help my diarrhea while they are inside of me taking care of the tumor. He didn’t but he said he would keep thinking and keeping looking. One phone call down, 4 to go.

I learned that Dr. Lange was out, and since I really didn’t need anything from him other than to update him on my progress (or lack thereof) that was 2 calls I could cross off. I called Dr. Nauta on Thursday and was told he was on vacation – which explained why I had not heard back from his assistant about the MRI he wanted me to do. Well, the ball is now back in his court to call me back next week. Being that I skipped Monday, I decided I could make 2 calls on Thursday. I called Dr. Karian’s office, where I learned that he had been waiting to hear from me – rather than dwell on the miscommunication, I spoke with his receptionist and she got me set up with the only available appointment next week for my cystoscopy – Wednesday. I felt as though I had finally accomplished something so decided to put off any other phone calls until Friday at the earliest. Pat is gone for a quick business trip so I may reward myself tonight by eating dessert first.

I’ll be having a busy day on Wednesday as I now have to go into Mt. Auburn in the morning for the cystoscopy, after which I’ll pick up my medical records before heading across town to Tufts New England Medical Center where I have an appointment with a PMP specialist, Dr. Martin Goodman. He’s new to Boston so I figured I need to pay him a visit and see if he has anything to offer – it’s only an hour from home, not like going to DC or Omaha. I’m not expecting to hear anything startling, but it’s always good to have new set of eyes review my case.

And that’s all from here. I’ll call Dr. Abner, the only name not crossed off of my day planner, tomorrow perhaps and see if proton beam radiation is an option for me. At least they have a machine at Mass General so once again I would need only go across town instead of across the country, if it’s even worthwhile for my type of tumor. Tomorrow is soon enough to delve into this.

Until later.
Jean

Posted by jean at January 11, 2008 05:24 PM
Comments

Hi Jean! Sorry to read about your recent set back. It sounds like things were caught early and you seem to have a great team of doctors working with you. Unfortunately it is another "bump in the road", but I am sure things will turn out OK. We will be praying for you! I am going thru a little scare myself. I had my tumor markers done on Monday and my oncologist called me to tell me that my CA19.9 was at 45 which is high, my CEA is at 2.8 which is normal, but up from my last test and my CA 125 is normal at 4. He want me to have a CT scan done which I am having on Wednesday morning. I just had a CT scan done in September and everything was fine and I had a PET Scan in October which was also fine. I know they say tumor markers arent always that reliable, but I cannot help but think that it is not a good sign. You had mentioned your markers were up a bit and I was wondering if you could let me know what they were and what you think of mine being elevated. I am nervous about Wednesday, but I have been thru so much already that whatever it is I will get thru it just like before. If you wouldn't mind, could you please email us at cas1761@aol.com whenever you get a chance. Take care and God Bless!!! Stephanie from New Jersey (Kathy's Daughter)

Posted by: stephanie castellano at January 12, 2008 12:18 PM

Hey Jean thanks for getting back to me so quickly with that information. Well I had my CT scan done and they did see a little spot in the upper right side of my abdomen. They were not sure what it was, but of course it looked suspicious. We sent the scans to Dr Sugarbaker who confirmed that it was recurrence. He said that everything else looked perfect and this was just one little isolated area. He told me that at this point he does not feel like I need another surgery, but I should have something new done called the "cyberknife". He said normally radiation does not work on our kind of cancer, but because I only have one area that is very small, he thinks that the cyberknife radiation is the best way to go. He said he had 4 people with recurrence over the last year and they did this and it showed great success. So now we are researching this and trying to get the ball rolling. I will keep you updated when I no more. How are things going with you? Still cant believe that two people that grew up in the same town have this rare, rotten cancer. I forgot to mention that I have to have a PET scan this week, so I'll let you know what happens. If you wouldn't mind write me an email with your phone number and I will give you a ring.

Posted by: stephanie castellano at January 20, 2008 09:15 PM