Multiple Myeloma – Our Pilgrimage to the Medical Mecca – The Mayo Clinic (Part II) – Getting to and Navigating Through the Mayo Clinic

Please note – this three part series was written at the request of my mother – who felt it was important information for other families struggling to get answers about Multiple Myeloma, and where (and how) to get to help.

As I said in my previous post – my Mum and I had decided the best next step would be to go to the Mayo Clinic to get some answers regarding her Multiple Myeloma and muscle weakness.

Getting an appointment was quite easy. I simply called the appointment line and told them what was going on and they booked the appointment, I had all my Mum’s insurance information – so no muss, no fuss. The appointment line lady told me, we would need to hand-carry all the pertinent medical records, including CDs of all imaging studies.

Now the hard part – I have to tell you, this was a logistical challenge, because I was coming in from the West Coast and my Mum was coming from Indiana. And my Mum was in such a weakened state, she was required wheelchair assistance at both ends – through TSA and to the gates for departure, and again from the gate. However, I did discover one could go to the airline ticket counter and be issued a “Gate Pass” – this allows an unticketed person to escort the person travelling all the way through TSA to the gate, and also allows an unticketed person to meet someone at the gate and get them to the Baggage Claim.

Booking the flights to get to Rochester was not an issue, it was the return flights that were of concern. We just didn’t know how long my Mum’s evaluation would take (I scoured the Internet trying to get a sense of how many days one should expect to be at the Mayo Clinic – there wasn’t really any solid information on this). I spent hours on the telephone speaking with airlines. I discovered that Delta Airlines (who were the most helpful) could issue a Medical/Family Emergency ticket, which was not refundable, but the flights could be changed – the only stipulations were that they needed the name of the attending physician, and we would have to pay the difference in the fare rate.

In the end we decided it was best my Mum flew into Minnesota, and I meet her there. It was a non-stop flight from her airport, and if we had flown all the way into Rochester, she would have had a 2 hour lay-over in Minneapolis, which was just not an option. I met her in Minneapolis, and we drove in a rental car down to Rochester.

I found out later, there are shuttles from Minneapolis to Rochester, for people going to the Mayo Clinic. One doesn’t really need a rental car, because even in Rochester, all the hotels seem to have frequent shuttle services to the Mayo Clinic – so really the exorbitant cost of a rental car could be avoided.

We had initially booked a hotel right downtown in Rochester, but it was so gross, we checked right back out, and headed for the Holiday Inn Express – which was a nice, clean hotel, just about 2 miles away (and much cheaper – they will offer and Family and Friends discount – which is a huge discount).

On the day of the appointment – we went to the Mayo Clinic. What an amazing place. Basically, the whole of downtown Rochester, is nothing but hospitals and clinics. It is really quite overwhelming. And it is busy. We were required to go to the Gonda Building – the original Mayo building, that is where my Mum’s appointment was. Even in the early morning hours, it is teeming with patients and families, trying to get to their appointments. We chose to take the Valet parking (and is only a couple more dollars than self-parking and really well worth it) – so our car was whisked away, and several Mayo Clinic staff members helped my Mum get into a wheelchair. We were directed to the clinic. As massive as the Mayo Clinic is, there are so many staff members guiding and directing people, one can’t get lost.

The Mayo clinic’s interior is just beautiful. There are gorgeous pieces of artwork, atriums, nice comfy chairs to sit in. The Gonda Building was completed in the 1950s, and it is very elegant, with beautiful wood paneled walls and marble floors.

Our visit with the Hematologist/Oncologist – Dr. Kourelis went well. He was dressed in a suit (as it seems – all the physicians are required to wear suits, and they look so professional). He listened to my Mum, and seemed to really understand her concerns about starting treatment, and the effects it would have on her already progressive lower extremity muscle weakness. We talked for a long time. He did not seem rushed, or seem to be in a time crunch at all – which was really refreshing. He ordered a battery of lab tests, and imaging studies, and laid out a plan – with which my Mum was happy.

We spent the afternoon going to MRI studies and the lab. The Mayo Clinic is so well orgainized, everything just works seamlessly. Each patient is given a list of all their appointments, the dates they are scheduled, the building and room numbers. There are a multitude of staff members to direct you to where you should be. And on the Ground floor – is what they call the “Subway Floor” it connects the maze of buildings – I am assuming so people can get from building to building, without going outside, which is a plus I am sure, in the depths of the Rochester winters.

We saw the Hematologist/Oncologist the following day – he went over lab results, and told us, that although my Mum had not received treatment for her Multiple Myeloma over the last 9 months, it was still in the early stages. Her labs were encouraging, but the MRI results (she had a cyst at the lumbar region of her spine, compressing the spinal cord) which indicated she would need a visit to a Neurologist. That appointment was scheduled for August 6, which was going to be impossible to attend. But the lady at the reception desk said, if we arrived the following day, and reported to a “Checker” (a person that scans the appointments for no-shows), she might be able to plug us into an unfilled spot. After my Mum’s scheduled Electomyogram – we sat in the waiting room, and I constantly reported in to the Checker. At 1:15 – someone no-showed their Neurology appointment (they are considered a “No-Show” if they are 1 (one) minute late for their appointment). The appointment was given to my Mum. All departments have Checkers – what a great system. And who in their right mind would no-show an appointment at the Mayo Clinic?

The Neurology team was amazing. They went through an extensive history and physical, and were openly puzzled by the results. More tests were ordered, and an additional MRI study was performed. We were advised some of the lab results would take several weeks to return, and based on the results my Mum might need to return for a muscle biopsy. After getting the additional lab tests – we were free to go. We stayed at the Mayo Clinic for 5 days – and accomplished what we set out to do. My Mum received some good news about her Multiple Myeloma, and someone actually listened to her concerns about her muscle weakness.

We decided to drive back to Indiana – as my Mum just didn’t feel like she had the strength to tackle the airports. We had a wonderful time driving through the Midwest – everything was so green and lush, and the countryside was scattered with tidy farms. It was really enjoyable. And it rained, which was most exciting – as I haven’t seen rain since March.

Delta Airlines credited our tickets back to us, we can use those credits at a later time. I was able to arrange a ticket back to California, and only paid an additional $150 despite scheduling the ticket at the last minute.

The good news – is my Mum has regained some strength and feeling in her legs – did the Electomyogram have something to do with that? I don’t know, but she is able to walk without a cane now. She has agreed to a modified treatment plan for her Multiple Myeloma – which her local Oncologist will manage, with the guidance of the Mayo Clinic.

Bottom line is – if you have a sick family member, and you need answers, or a second opinion – take them to the Mayo Clinic. It is an incredible place, filled with brilliant, caring and compassionate people. I am so glad we were able to.

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24 replies »

  1. My in-laws went to Mayo clinic in Jacksonville when we all lived in Florida, and they worked wonders. However, I was told by my brother’s wife that Mayo clinic in Rochester does not take health insurance. Is this true? I thought it didn’t sound right.

    So, is your mom receiving any treatment by her oncologist now? Did they do anything for the cyst at the base of her spine?

    Blessings and good health wishes to you both.

    • Hi Lori, when I called to schedule the appointment for my Mum with the Mayo clinic, they took all of her insurance information – luckily she has really good insurance – and there didn’t seem to be an issue from their standpoint. I can’t imagine a place like the Mayo Clinic staying afloat if they relied on self-pay patients only. We are waiting to see how much the actual treatments are going to cost. We heard the Revlimid (which is one of the medications used to treat the Myeloma) costs about $19,000 per month and the Xgeva (the injection to help repair the bone) is $1500 per injection. Honestly – who can afford to stay healthy in this day and age? Yes, my Mum will be receiving her treatments through her local Oncologist, as laid out by the Hemtalogist/Oncologist from the Mayo Clinic. We are still waiting for some final lab results to come come back from the Mayo Clinic, and I am assuming at that point they will devise a plan for treating the cyst on her spine. I will provide updates as I get them. It is our hope that this series of blog posts will be helpful to others that are faced with this type of situation. Thank-you for your kind comments and wishes!! You are the best!!!

  2. Thank you so much for sharing your journey with you mother. I am so grateful to you for what you did for her. You are a great daughter and Julie is a hero to me. Thank you so much.
    Ruth Cohen Kubicek

    • Hi Ruth!!!! Thank-you so much for reading my blog posts – we are hoping these posts will help others that find themselves in the same situation, not knowing which way to turn. And as for doing this for my Mum, it is the least I could do considering what she has done for me over the years. She is most definitely my hero as well, as is my Dad. I am blessed with amazing parents and would do anything for them!!!! I hope all is well with you and your family!!!!

  3. This was so informative thank you! I have to ask though – are you or your mum from England originally? I’m so used to seeing Mom here now that it really stood out for me 😊

    • Yes – my Mum is from England (Essex) and I was born in Australia, so Mum is the natural way for me to spell that word. And thank-you for reading and posting a comment. I hope no one else never needs this information, but if they do, my hope is this series of blog posts provides a little bit of help. Even with me being in the medical field, it was a lot to figure out and get through. But we managed.

  4. I’m so sorry to hear that your mom was diagnosed with that, but I’m glad you were able to get her into the Mayo Clinic and that things are looking up. <3

    • Hello, my friend. The Mayo Clinic is an amazing place, and I see now why it has such an incredible reputation. Hope all is well with you!! I must come over and “visit” sometime. Say Hi! to LM and your family for me!!!

    • Thank-you so much for the kind words. It is all a bit overwhelming – trying to get through the medical system, and understanding everything works. Now we are holding our collective breaths to see how much all this will cost. I sense a blog post will be forthcoming about this in the near future.

  5. I had my open heart surgery at the Mayo Clinic almost two years ago, SD. I felt held and reassured by the compassion and expertise there. Also, my father had multiple myeloma. I’m sending healing and loving thoughts to you and your mother.

    • Hi Ann,
      I remember you posting about that. The physicians and all the staff are just amazing up there. Thanks for the thoughts, I shall pass them on to my Mum!

    • Thanks Pam – she is actually doing pretty well – I went to a Myeloma conference in LA several weeks ago, and there were people attending who were diagnosed over 15 years ago – and doing just great. She seems to be responding (and tolerating the treatment) – so things are good!!!

  6. Thank you for sharing you and your Mum’s journey. My husband has stage 3 multiple myeloma, and they are looking at a stem cell transplant. He is going through chemo now. I really appreciate you sharing such helpful information, and best wishes to your Mum!!

    • Thank you!! As an update, my Mum’s labs are normalizing, and at some point they are considering a maintenance program. She is doing well, which is such a huge relief. My thoughts are with you and your husband, and I hope he is improving. I learned at the IMF conference they are making some incredible progress in Immunotherapy – which is very encouraging!!!! Please let me know how your husband is doing, if you get a minute to do so!!!

  7. I recently lost a dear friend who originally hailed from North Dakota and made it a point to have both her and her spouses’s annual checkups at the Mayo Clinic. Her own sudden demise was due to a massive heart attack and I imagine could not have been predicted and therefore could not have been prevented by anyone. However, just the fact that she made the annual trek to the “wilds” of Minnesota to specifically visit the Mayo Clinic made a very outsized impression on me, due to the high regard in which I held her spirit and her intellect. Your and your mom’s experience clearly supports this nearly fantastic impression or what a medical center can be and do.

    • It is truly a wonderful place. It’s a shame that other medical facilities couldn’t base their practices and methods on the framework of the Mayo Clinic!!!

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