Diagnosis Update, And A Decision (?)

Today we met with Dr. N, my Medical Oncologist, who had the results of all the tests I was given last week (with the exception of the bone marrow biopsy results, which are still outstanding)  My new diagnosis is a bit more daunting than the original.

High grade b-cell lymphoma with MYC and Bcl-2 arrangements.

Doctor M called it a “Double hit lymphoma” and said that it is a “Particularly aggressive b-cell lymphoma.”

I’m still working my way through this, mentally, and have asked my doc to send me any written information that I can study.  He is a lovely man, and will take as MUCH time as I need and want to discuss it with me, but I don’t feel I can 100% connect with the information until I can read a bit about it.  We all learn differently.

The chemo is going to be more aggressive than originally envisioned, and this is the part where I think I may need to take my care into my own hands in a way.

So far St. John’s has been good, if a little uneven, with the quality of care.  But one thing that’s been a constant is the confusion on the 2nd floor, the main Cancer Center where I’d be receiving chemo treatment.

The staff seem to be loud and a bit aggressive with each other, but I may be misreading the room.  I don’t like loud noises, or loud voices, when I’m trying to work through something.  I don’t know how difficult it will be for me to insert myself into this environment each day for chemo.

Also, there seem to be odd misunderstandings. For instance, as I checked in today one of the reception staff asked if I had a port. I said, “Yes.”  Somehow that got translated to the nurse taking my blood thinking that I had requested that my blood be draw from my port, which I definitely did NOT request.

The port hasn’t been used yet, I have NO IDEA if it’s entirely healed, I wouldn’t have requested that.

But there it was, THE PATIENT HAS REQUESTED THE PORT BE USED. So the nurse tried to use the port, it didn’t work, she couldn’t get the needle thing in and it hurt like hell.  The nurse seemed put out with me, upset that I had my family with me, and the second nurse who came in to draw the blood from my arm was a bit abrupt, too.

Whether this is just ‘their way’, whether I was ENTIRELY misreading the situation (very possible) or whether there was some underlying reason for the oddness are scenarios I’m going through in my mind.  Suffice to say, the vibe of the place seemed odd to me.

But, then again, I just heard that my cancer is more serious than I thought. I’ve learned that it has to be treated more aggressively, and EVERYTHING seems odd to me.

I would be VERY happy to be proven wrong.  It may be that I’m just terribly oversensitive right now because of the change in the diagnosis, but it feels as though the needs of the patient may not come first in the Cancer Care Center at St. John’s.

Appointment Madness
I don’t know where the disconnect is, but I’m hoping that when I go back on Thursday for my “Chemo Class” I’ll get a better feeling about the place.

After my meeting with my doc, when ALL I wanted to do was crawl home, write a bit, do some research and contemplate what I’d just been told, I had to spend an hour standing up, leaning on a high counter, while one of the receptionists scheduled appointments.

Making a woman with so much cancer pain stand at a reception desk for an hour scheduling simple appointments just seems cruel.  At the least it seems they should have a dedicated scheduler on staff where a client can SIT DOWN with office staff and work through setting up appointments.

More to the point, I believe these appointments could have been scheduled very easily without me even being there!  I mean, I have nothing else on my agenda right now except for getting better.  If they’d just schedule the infusions, appointments and possible transfusions, I’ll just show up (or let them know if I can’t make them, and change them)  It seems a perfect use for the MyChart portal.

A Different Center?
I definitely want to continue my treatment with HealthEast, but an alternative would be to move my chemo to a different Cancer Center within the network.  Woodwinds is the center where I had the Bone Marrow Biopsy, and would be an alternative to St. Johns. But would it be any better? What makes me think one center would be more caring than another center?  It’s farther away, and it could/would make things more complicated with my Med Oncologist, which is not something I relish.

I don’t really want to change, I just want to feel better about St. Johns.  And that might not be possible, and I will just have to live with that.

HealthEast and HealthPartners are always sending out surveys for patients to fill out, I have two in my bag right now.  But do they REALLY want to know about issues, are they REALLY interested in making the experience of healing cancer as good for the patient as it could be?

Am I just being difficult to ask these questions?

I think I need to sleep on a lot of stuff.  In all honesty, once I get going at ANY Cancer Care Center, I think I’ll just be on auto pilot as I fight through however many Chemo sessions I end up needing.  I may just be grasping at silly details to keep my mind from focusing on worst case scenarios.

Farther Along
The phrase, “Stem Cell Transplant” was used as a possible prophylactic measure against return of the disease.  Having been through that with Gerry, and not really knowing what that might mean in terms of insurance, etc., I’m just leaving that alone right now.

It’s scary, though.