Cancer Frustrations

Well, today was disappointing.  It has been almost six months since Scott's surgery and we had our big follow up appointment with Dr. Panunti, our Endocrinologist at Ochsner.  Earlier this week Scott had a CT Scan of his chest and neck and repeat labs drawn.  We had three goals for today:  1-Calcitonin levels would be below 500.  2-Scott's thyroid levels would be within normal range.  3-The spots on Scott's lungs would not have increased in size or number since the last CT Scan.

SO, the good news:  We achieved one of our goals!  The spots they saw on Scott's lungs are still the same, meaning they are probably just granuloma's (scars from a previous sickness of some kind).  The bad news though, is that Scott's Calcitonin levels have increased to 800 in the last two months.  Normal range is 0-15, Scott's were almost to 3,000 before surgery, and have been at about 500 since surgery.  The increase is an indicator to us that cancer is growing again somewhere.  Dang it  (confession: I said a much different word to myself in the office).

The CT Scan also found an enlarged lymph node in Scott's mediastinum, the area behind his upper sternum (breast bone).  Also another dang it.  I tried to take the news in stride and managed not to cry in the doctor's office in front of her and her fellow and the medical student following our oh so very interesting case.  I think Scott was trying not to just get up and stomp his feet and yell like an angry 2 year old.  We both did a pretty good job controlling our emotions.  Dr. Panunti says it's time to go somewhere else again for further care.  Scott's is the second case she has ever seen and it's time to go to the experts.  It's hard hearing a really good doctor say she doesn't know what to do with you anymore.  This means either back to Washington University in St. Louis where Dr. Moley is, or to MD Anderson.  The news is so frustrating.  We wanted so badly to be normal again.

We faxed all of Scott's results to Dr. Moley and will probably hear back from him next week.  The next step will most likely be to biopsy the lymph node that is enlarged.  Then we'll probably have another surgery and possibly try a new experimental drug that just came out.  It's overwhelming thinking about doing everything over again that we recovered from in January.  What happens to grad school?  And now I really need to stay at least part time at my job when I start grad school because we need my benefits since they've already approved everything and cover everything so well. That overwhelms me that it's no longer just an option, but a necessity.  What happens with residency?  Scott's program has been absolutely AMAZING and so gracious in dealing with him and his sick self throughout this last year, but if we need another extensive surgery or experimental chemo it's hard to take any more time off than he already has.  What happens to our vacation we were going to take in September?  And getting chickens?  And who will take care of the dogs when we go out of town?  And feed the chameleons their gross bugs that Scott doesn't mind? And is this going to be something we have to deal with for the rest of our lives???  When will we ever have kids if we're always fighting cancer?  Why Scott? Why us? All these questions have been flooding my mind since the appointment and trying to swallow me up.  I'll be the first to admit I'm being a little irrational and over dramatic about it all, but that's my first reaction.

Now I'm just trying to take deep breaths and not freak out too much about next month and two months and six months from now.  I'm going to put my makeup back on and go to dinner and laugh and carry on like a rational human being.  We're just going to continue to take it one day at a time and deal with it.  I remember feeling this way and much worse when we first got the diagnosis in December and we came through that first surgery just fine.  Everything will work itself out along the way.  Stressing just gives me an ulcer and makes me want to cry all afternoon.  Which I still did for a while anyways.  And then napped.  We are thankful it's not Scott's lungs.  And that it's only one lymph node so far.  And that we have great doctors who are willing to go the extra mile for us.  And amazing family and friends who pray for us everyday and are so supportive.  Life will be ok.  It's just going to be more work.

*Heavy sigh*  Alright, done ranting about all that.  Last thing from the appointment is that Scott is now Hyperthyroid.  Meaning he's got all sorts of extra hormones in there going crazy.  He feels the best he's felt since last spring though, so for now Dr. Panunti says it's alright.  The benefits out-weigh the risks.  He's not symptomatic and so we'll just continue to keep an eye on it for now and let him be happy and have energy.