Tuesday, May 13, 2014

Day 13 - Memorial Sloan Kettering, NYC

Today David and I headed to New York City for his checkup. Now that he's off chemo, we usually go every 3 months for an MRI and follow up visit. I was hoping David would at least get some help for his body pain, even if they didn't have answers. 
It's hard to tell, but this is actually a dark gray shirt...and another cute bird scarf I got at Charming Charlies ;) I always make David take a picture with me when we're at Sloan.

We headed out mid-morning...non eventful drive in, thank goodness! We are on time...had no delays at any appointment, which I had really been hoping for! Last time it took forever! The MRI went pretty quickly, we grabbed lunch, then headed to the other building where his doctor is located. The fellow (not exactly sure how all this works, but they are a full fledged doctor, higher than a resident, but still under tutelage of the main doctor...I think anyways...) came in first to do the initial exam. It's usually either a fellow or a nurse practitioner for the first part of the visit. Anyways, first question when she walked in after looking at David was, "are you OK, are you anxious?" She could tell he was nervous (he was sweating up a storm!)...so right off the bat she let him know that his scans were good. No changes, nothing to see...praise God! 

Once that was out of the way, she did the whole physical exam...all kinds of neurological tests to make sure the old brain is working right. ;) I always get my hopes up, because the fellow (or nurse) spends so much more time with us, asks lots of questions, writes lots of stuff down...seems like they actually care about David's symptoms, etc. Anyways, we talked about the body pain a lot...David showed her where it hurts and what seems to trigger it. Thankfully it's not constant pain, but if any pressure at all is put on certain parts of his body or skin, it really hurts. To demonstrate, he barely pinched the skin on his forearm, and it's like a 5 out of 10 on the pain scale. Normally that's something you wouldn't even notice. It's focused primarily at his inner thighs and abdomen...but also shins and forearms. It's really weird...she did seem to think it was a side effect of the PCV chemo regimen that he had been on. But it doesn't normally cause problems like that, usually more pain or loss of dexterity at the extremities. Also doesn't explain why it had been getting better and now it's getting worse again. He's been off the chemo since August! Anyways, after covering all the info, she went to get "the boss" as she put it...David's oncologist. 

Dr Omuro came in asking how David's work was going...whether his job was treating him well. He of course said his scan looked good. Then he started mentioning that having some sort of long term disability would be a good thing to look into. He really seemed adamant about finding some sort of coverage...which, while an excellent idea, was a little odd and worrisome, at least to me. Anyways, he said it was just some free advice. I dunno, while I agree with him totally, it was a different sort of thing for him to recommend...especially since David's scans were good. On the plus side, he did extend the time between visits to 4 months (YAY!!!) and said he hopes we don't think of them (Sloan) as often. Which was definitely good. The only downside to the visit, which if I'll be honest, totally bothered me...in fact, it had me tearing up afterwards...was that after being in the room for five minutes, giving advice and double checking the neuro tests...he left. Like, I didn't even realize the visit was over. I was so upset, he didn't mention the body pain once. I mean, that was the main topic with the fellow, then nothing. I had even been talking to David about how we really needed to press for answers, or at least doctor recommendations...and then he was out of the room before I realized the visit was over and before I could ask him about it. I was just so frustrated! The fellow was concerned and questioning, but of course didn't give us any answers...it's like not my problem so I don't care. Ugh! I mean, it's obviously a side effect of the chemo, but there has to be some sort of solution. I guess we'll have to bring it up with his general practitioner again.

Overall, other than the body pain, and some medication issues we need to work out, the visit was really good...heck, great! The scans continue to be good! It's hard to ask for more than that! Yet, I hate seeing him have this weird pain, and nobody seem to give a damn. It just really bothers me. But, tonight at least, gonna focus on the good news. Four months before we need to make the trek back to the big city! No changes...That's a win any day!