Can One Be Too Involved With Mayo Care Team Re: Multiple Myeloma?

@smiles1951 Personally, I don't think a patient can be "too involved" when advocating for their own health. Knowledge is power. And from my own experience, my medical team is glad I ask questions, and keep track of things. I have Kappa Light Chain multiple myeloma, and a couple of co-morbidities, including end-stage renal disease not related to the myeloma.

Yep, don't be surprised if your monthly numbers reflect a better level, if you were under-the-weather at all last time. How are you feeling these days? Is that nasty cold finally gone?

Curious why your family member would ask if you are too involved?
Ginger

Hi @smiles1951 I’m with @gingerw in agreement that you can’t be too involved when advocating for your health. From experience as active patient myself in the hematology department at Mayo for the past 5 years, I can tell you that all of my doctors and their staff welcome my questions, give patient and thoughtful answers to make sure I’m well educated and comfortable with any concerns.
We still continue to work together as a team on my behalf. I’ve been asked to send messages in the portal if there are any changes in my health, such as a cold, infection or new meds introduced from a PCP. I’m sure you’ve noticed as well that being a patient at Mayo spoils us for care anywhere else.

With your relatives making a comment about being too involved with the Mayo staff, I’m suspecting they’ve never been exposed to the refreshingly attentive and compassionate care we’re used to with our Mayo care teams.
So, from my perspective, go ahead and have your list of questions and comments ready to roll for your appt Wednesday. As Ginger said, with your lengthy cold, you very well may find some numbers are skewed from the norm. But you have a possible assignable cause that your doctor will take into account.
I’m feeling the same bit of anxiety. I was given a long leash between blood work this time and I have an appointment coming up Tuesday. However, I’ve been on antibitoics for 17 days so, I’m pretty sure that’s going to put a monkey in the wrench of my winning streak on blood numbers. 😅. Again, I have an assignable cause…but still would rather have encouraging results instead of needing a recheck in a month. Good luck to you and I hope your numbers don’t raise eyebrows.

Thank you. Your letter is well thought out and very good. When I was almost 20 years old I almost died when having our first baby. Much prayer saved me then, and I learned to enjoy every minute God gives us. Many people do not ever learn this and that is sad. They (to me) waste their time on activities instead of doing what they are passionate about. These Mayo trips all of us have to spend our time on can sometimes frustrate but we have to remind ourselves they are very necessary. Again, thank you for your well written correspondence.

I wish you positive results with your blood counts Lori. God bless everyone going through cancer.

I am of the opinion that it is possible to get too involved if the involvement turns into an obsession. In that case the extra stress may be detrimental to one's health.

Yes, we should know not to be obsessed, but "stay on top of things" as necessary.

Thank you, Jacklyn! I got a little break as my favorite NP from my oncologist called last evening to see if it would be ok to postpone my appointments for bloodwork and Dr visit today. Their schedule is packed and a new AML patient desperately needs to get in asap. No problem for me! I’m no longer a critical care patient…this was just a 5 year followup and I suspect my ‘all clear’ final meeting with my oncologist.

I had 4 chemo nurses at my home clinic while in the hospital for 8 weeks. We became good friends, more like family, and still get together socially. I mentor AML patients and potential transplant patients for their clinic. It will feel weird to no longer be ‘a patient’ there but I still feel part of the family. I’ve rescheduled but now the hard part is holding onto the large order of chocolates I bought to hand out at the front desk and infusion center as a 5 year CELLebration! 😂
Have a great vacation!

I am
So far. 😄