Comforting Moments Amongst the Madness

Casandra Porter

Comforting Moments Amongst the Madness

Casandra Porter
mayo_clinicMayo Clinic has proved to be a comforting beacon of hope amongst the sea of madness we've been experiencing these last six months. Whirlwind changes are taking place as we transition him from his current specialists to the care of Mayo Clinic and I can't explain how relieved I am I made the decision to do this.

It definitely has it's chaotic moments. Just this past week we had three appointments in one week. They are more than an hour drive away from us and it ends up being a lot of driving time for me.

Yet, meeting his new primary care doctor in March who is staffed with Mayo Clinic gave me my first wave of relief. Could it be that we lucked out? I kept thinking this because she was so attentive and nice. Talk about amazing bedside manner. The best part is that she recognized right away that while Marc is the one being treated, I was the one who organized his care and I was the one with the answers.

My husband has had four surgeries now on his head so thinking, memory, or anything related beyond just asking him how he feels is a little too much to ask right now. She understood that in the first five minutes. In fact, in one appointment she covered more ground than any of the current SIX specialists he is seeing now has ever done.

On Thursday, I got help for the first time in a LONG time. My brother was able to take Marc to meet his new Neurologist. When they returned and told me that she ran tests on the first visit and already had an established care plan with regards to his seizures and medication, along with having addressed his pain issues, I was stunned. Not only this, she wrote out the care plan specifically for Marc to bring home for me so I understood what they'd discussed. She recognized his impairment and took initiative and action.

So, on Friday when I took him to meet his new ENT and in one visit she'd scheduled him for testing before we even left the office and to see an Endoscopic Surgeon for next week, already, I was floored. I had to be dreaming at how efficient they were and how amazingly caring. Color me impressed, thoroughly so.

Most important, they don't deal with little appointment cards that can get lost or misplaced, they create "Patient Iteneraries," which are emailed or mailed, depending on your preference, or printed out immediately for you to have. They make it, almost, too easy.

All I can say is thank you. What a relief!

I am still overwhelmed at the amount of appointments we have. This past week we had three, this upcoming week we have four. And I am once again pondering how am I going to work and get him to and from appointments.

I've been given some great resources but quite frankly the money just isn't there anymore. All of my savings have been depleted, living paycheck to paycheck is the order of the day when I do work and if I work enough to actually call it a paycheck, and my 401k is non-existent now.

So, how do I make ends meet? I don't like having to ask for help. Honestly, it makes me feel weak. But I've learned to ask for little things like rides, and food, and help with home care. But money? Asking for that makes me feel kind of shamed and broken. But what can I do? We have no resources and are in jeopardy of having to stop his care so I can work to be able to have a place to live. So, I had to ask myself... What's worse? Making yourself vulnerable and asking for what you need or losing your best friend and soul mate because you didn't try everything you could? Easy answer.

With the help of a friend, I created a fundraising campaign on GiveForward.com called Helping Marcus Fight. I have forwarded to friends, family and even colleagues. I have made fliers and will be posting them in grocery stores, apartment bulletin boards, community centers, and local churches. I've enlisted the help of everyone I can think of who was willing to help and opened up the campaign for 30 days.

I am determined to save my husband's life and keep his treatment going as long as I can. I was advised that all they can do is continue to do each surgery until the infection is completely gone but no one honestly knows how many more surgeries that will take. Then comes repairing all the damaged bone in his head that was removed because of the infection.

With the help of Mayo Clinic, just maybe this nightmare will end soon for us and he can get on an actual course to recovery. I have hope.

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Denise

Hi Casandra--I'm just getting caught up so apologize I'm behind in reading and commenting.\r\n\r\nI totally understand how hard (and awful) it is to ask for help, especially when the help is in the form of dollars. And, yet, the bills need to be paid. I think it's terrific you did what's really hard to do.\r\n\r\nSo glad your brother helped. I've got my fingers crossed that this help continues.