Tuesday, July 24, 2018

Oncologist Appointment

I had an oncologist appointment yesterday. Lots to talk about, but let's get the important stuff out of the way -- everything looks good. I'm still stable and healthy.

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I met with Dr. Y for the first time. More on him in a minute.

My blood work looked normal, he said. He asked how I was feeling, and of course, I said I was fine. No strange infections or unusual illnesses.

He felt my nodes, and didn't find anything strange. I told him about a node that had popped up a few months ago, near my left hip, which has always been my "trouble spot." I had noticed it in March or so, and I tried not to worry about it. I figured as long as no other nodes were popping up, and as long as the node wasn't causing any swelling in my leg (like the one that led me to needing Rituxan 8 years ago), I wasn't going to worry.

The node had actually started shrinking a couple of weeks ago, so I wasn't expecting him to be concerned, and he wasn't.

All in all, it was a short visit, and a happy one -- just the kind I like.

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Now, on to Dr. Y.

As many of you know, I've been having trouble finding an oncologist. My first oncologist, Dr. R, was wonderful. He ended up leaving my state to teach in a medical school a few years ago. I was assigned to Dr. K, who was awful (didn't listen to me, talked to me like I was a child, insisted on a PET scan but could not give me a reason why I needed it). He retired after I had seen him a couple of times.

I was assigned to Dr. V, who was wonderful. He is a Lymphoma specialist, and very excited about what's happening in the world of FL. Unfortunately, after a year, he left for a dream job at a major research hospital.

So I was assigned to Dr. Y. As I wrote about a month ago, I had hoped to see a Lymphoma specialist again, but I had a tough, frustrating time getting an appointment (click the link if you want the details -- I won't get into them here). I was given an appointment with Dr. Y, which I took just so I could be done with the process of making an appointment.

Dr. Y is a general oncologist, not a Lymphoma specialist, which is the kind of doctor I really wanted to see. Many of you readers encouraged me to cancel my appointment with Dr. Y and see a specialist instead, and that was what I had planned to do.

And then life got in the way. I never made another appointment, and I totally forgot about the appointment with Dr. Y. Late Friday night, I had a message from the hospital reminding me that I had an appointment on Monday, and by then it was too late to cancel. I wanted to get the check up, and I wasn't sure how long it would take to see a specialist. Just going was easier.

It's a funny thing to be able to forget about cancer so much that you forget an oncologist appointment. I know I'm very lucky to be in that situation.

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Dr. Y is very nice. It turns out that he is also the oncologist for a friend of mine who has Multiple Myeloma, another blood cancer. My friend is very fond of Dr. Y.

So here's the kicker -- Dr. Y told me he knew about me because he had seen the notes from Dr. R, Dr. K, and Dr. V. He said, "We've been kind of passing you around a lot. I'm sorry about that.....Unfortunately, we going to have to do it again. I'm retiring in 2 months."

Uuuuuuuuuugggggghhhhhhhhhhh..............

So I'll be looking for another oncologist -- my fifth one in five years.

I'm starting to think it's me that's driving them away. I swear, I'm not a difficult patient. Ask anyone who knows me -- I'm a sweetheart.

Dr. Y said the practice has made an offer to someone to replace him, and that everyone there is very excited about her coming aboard. Like Dr. Y, she's an oncology generalist.

But I think now is the time to really make the switch to aspecialist. It will mean a less convenient location, but I'd rather have someone who knows what's going on in the world of Lymphoma. My only problem is inertia -- things go well, and I put the appointment out of my mind, and then it's too late to find someone else.

If one of you could remind me in a month or two to call for an appointment with a new spcialist, that would be great.

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One more comment, though. Dr. Y is retiring because he just can't take all of the paperwork anymore. Not "paper" work, but digital work -- the electronic records and such. He says he stays at work until 7pm every night, has dinner, and then gets back to the paperwork.

Dr. R left clinical practice to go teach to avoid all of that, and Dr. K hinted that it contributed to his retirement as well.

Electronic records and such are supposed to be helpful, but I hear of so many patients who say they only see their doctor's back as she types on the keyboard, and I hear from so many doctors who say they don't get to spend enough time with patients because (like Dr. Y) they have so much digital work to do.

Something's going to have to give. Not sure what.


8 comments:

icrazyhorse said...

Hi Bob

I'm glad your oncologist appointment went well. :-)

Bummer that you have to find yet another oncologist - good luck with that.

William

Shelly said...

Omg Bob, I don't believe this! Go for the specialist, like you said, it's time. You will be much more comfortable meeting with a lymphoma specialist who knows the current protocals for FNHL and who you can discuss what your future will look like.
I've been having a similar issue with primary care doctors here on the cape. I've had three in two years. They just keep leaving to go closer to home (really?). It's true though, you rarely look at a doctor in the eye nowadays, as they are beside you, clicking away on the computer and asking questions. Always the "same" questions, too. ugh
So glad that you're still doing well and not needing treatment!
Keep on keeping on,
Shelly

Rodrigo said...

Dear all.
I agree with Shelly, Bob.
You have to go to a Lymphoma specialist. He will give more accurate information and you'll be more confidente and comfortable with that.
Rodrigo

Lymphomaniac said...

I will see a specialist. I have the motivation now, and in fact, Dr. Y said "You can see the new person they bring in, or you could go downtown." So I'll take his advice and go downtown, especially since it will only be a couple of times a year.
Thanks, everyone.
Bob

Anonymous said...

Glad to hear the appointment went well, Bob but sorry to hear about your doctor roulette... IMO, specialist vs inconvenience is worth the trade (especially having recently had what I call my "3 am brain" put into a spin by my GP calling to express his concerns about lab results - until I spoke to my Onc who said "nah, that's just your R maintenance doing that!" Better to always deal with those that know the intricacies of FL!)
Regarding the last part of your post, my wonderful wife is an OB/Gyn. Dropped OB a couple of years ago and we thought things would get better but EMR seems to have filled any thoughts of spare time. Our evenings are usually her getting home from the office (10 minutes away) at around 6:30/7:00 for an hour or so of dinner I've prepared and then her getting back on her laptop until 11:00 to finish all the charting and documentation crap she chose to defer so that she could actually speak to her patients during the day instead of just frantically typing away while they sit in their appointment.
For the most part, EMR is not about the patients. It's about the lawyers.
Thanks as always,
M

Lymphomaniac said...

M,
Distressing to hear about your wife having the same issue with EMR. I posted something about it on Twitter, and had a few doctors say that something had to change, but no one has any real solution at this point. I appreciate those doctors who do all of that work. can't be an easy job, and EMRs don't seem to make it easier (though they say technology is supposed to improve our lives.....)
Bob

Anonymous said...

Hi Bob,

I just discovered your blog. I was diagnosed last December and so I have not yet had my first Diagnosiversary. My diagnosis came right after my 59th birthday, just before Christmas. I went through the tests, the emotional roller-coaster, but now find that waiting patiently is a good course to follow.

I like reading that you are celebrating your 10th. It gives me hope. I have a specialist...the oncologist that performed my biopsy insisted that I use Dr. M. He is an angel to those of us with blood cancer. All of his patients love him. Good luck finding a specialist...and thanks for writing. I have a few blogs to catch up on.

Louisiana Girl

Lymphomaniac said...

Hey Louisiana Girl! Thanks for reading. Sorry to hear about your diagnosis, but happy that you're able to wait, and that you found a good oncologist. (I'm a little jealous....)
Feel free to keep us updated on how you're doing. And good luck with the waiting.
Bob