Mayo Visit

Well, after a whirlwind trip of 10 hours of driving in the upper Midwest, we are safe back home in Omaha. We got home and decided to stretch our legs and go for a family walk before Tim headed back home to Lincoln. It was really great that he was able to come up here and stay with his sister and Tallinn while we were gone for about 30 hours. Listening to podcasts while we were driving there and back really helped make the trip pass more quickly. Also, a quick shout out to my best friend, Judi, who lives in Rochester. She picked us up this morning and drove us right to the front door of the building we needed to be at for my appointment. I only got to spend about 7 minutes with her, but I will always take what I can get! She is one of those friends who always makes me laugh, even through the tough times.

We entered the Mayo Clinic and immediately had to answer a barrage of questions. We then got our temperatures taken. We moved on to a second station and had to give my Mayo clinic patient number and let them know when and where our appointment was. We were given a big blue sticker with the word “Thursday” printed in big white capital letters. We had to wear the sticker in plain sight the whole time we were there.

The Sarcoma Cancer Care Team is housed on the 10th floor of the Gonda building. It is a newer building and was beautiful. There were a lot of Murano blown glass sculptures in the main areas and then beautiful quilts back in the patient appointment room areas. The waiting areas are massively large with several wings waiting in the same area. There were signs on some seats for people not to sit on to keep physical distance from one another. Most, if not all, of the patients were cancer patients, so there wasn’t a lot of need to say much. We are pretty good at practicing social distancing when we need to before the COVID 19 virus became an issue. I got called back pretty quickly and when I was measured at being 5 ft 3.25 inches. That’s the tallest I have ever been in stocking feet! Okay, truth be told, I was wearing a fuzzy hat. It was cold today up in Rochester! Anyhow, the person checking me in asked a few questions and then gave me a sheet with the names and pictures of all the team members on my Sarcoma Cancer Care Team and contact information. Wonderful idea! A fellow (which is a doctor studying to be a specialist in a medical field) came in and so did a RN. He asked me to start telling me the story of my cancer journey. He had already known most of what I was going to say….but wanted to hear it all in my own words. He verified some of what I said with questions of his own, and then allowed me to ask him the questions I had brought with me. Then he went over some of the scans with us and then some of the options that the team had talked about ahead of time for treatment.

When the Sarcoma Specialist came in (he’s the head guy there and super nice), Rich and I were very impressed. He told us that he had talked to the gyn surgeon at the Mayo Clinic and they had talked about my case ahead of time. Surgery is not an option right now, agreeing with my local surgeon in Omaha. So they cancelled my later appointment for today. That did allow us to leave earlier to get back home, which was nice. So this doctor has a different way of approaching my case than the doctors in Omaha. This Sarcoma Specialist sees a LOT of people with LMS like me. To the doctors in Omaha, I am an enigma. Leiomyosarcoma is 1% of all cancers. The fellow has seen more sarcoma patients than my doctors in Omaha. So they have a lot of experience. My doctors in Omaha want to be very aggressive and try to shrink the tumors in my pelvis so they can operate. The trouble is, it has to be shrunken down really small to get ALL of it out. LMS is an evil beast. It just keeps coming back. It isn’t a matter of if it will come back but when and where. My cancer has already spread to other areas of my body. I am stage IV. The toothpaste is out of the tube and it isn’t going to go back in. There will be no cure. There will be living with it as best I can. The doctor said that there is no reason to put me through the really horrible chemo treatments (which is what my chemo doctor in Omaha wanted to do even before my lungs were cleared) when we can use some that will give me better quality of life. So for all you medical folks out there, we are going for palliative care versus curative. Currently, I have no symptoms from any of my spots of LMS in my body, including the one in my pelvis the size of a cantaloupe. If I hadn’t really been in tuned to my body, I would likely still be living my life not knowing about it. My back does hurt if I have been walking a lot from the spot on my spine. However, if we can keep everything like it is or even shrink it, then I can lead a good life. The studies have shown that the really icky combo drugs did not prolong the life more than the single, less icky chemo drugs. So we are aiming for quality of life. Surgery is not longer the top goal. Letting me live my life is. No, we are not giving up. I know this will most likely kill me at some point. There is no cure. However, I am going to take the Fellow’s advice and do whatever makes me happy. The plan is to start on Doxil. It is a chemo drug with a lipid attached to it. It is evidently bright red and has very few side effects. The biggest one being that it may turn my hands and feet red. At least I live in Nebraska where the greeting to all natives is “Go Big Red!” I should fit right in! It does not cause hair loss. In fact, my hair has started growing back in a bit over the last 6 weeks. It is maybe 1/2 cm long (yes, I look like a chia pet). My hair is dark though….so I don’t know if it will be blonde again or not. It is nice to know that I will maybe have my own hair for Joe and Michelle’s wedding! Six months of growth….I might be able to pull it off! The doxil is an IV drug and will be administered over a couple of hours once a month. The Mayo doctor also suggested another drug (not a chemo drug) that is given IV once every three months. It is a drug that will strengthen and seal off my bones so the lesion in my L2 vertebra doesn’t spread or weaken the bone and will protect my other bones from getting other cancers spots growing on them. So these two drugs are the suggested plan of treatment here in Omaha. I have two appointments tomorrow (Friday) at Bergan Mercy. I will see my chemo dr to review my plan and set a start date (most likely next week) and then the pulmonologist to get my lungs checked out. I had a chest CT on Tuesday, and the Mayo dr’s reviewed it and said I should be good to go. So more tomorrow on dates and such.

I want to thank you all for your words of encouragement and support. I am overwhelmed with the kindness being sent my way. I have so many wonderful people in my life. I am so very blessed! I am sorry if you sent me a message asking how today went and I didn’t get back to you. I really wanted to talk to my kids first and my parents. To avoid having to type out everything or talk about it over the phone multiple times (because I tend to get a little emotional talking about it) I would rather just type it here and let you all read it at your leisure. I hope you understand.

24 thoughts on “Mayo Visit

  1. Cyndi,
    You are a brave woman and the Lord looks on you with great love. You and your family are in my continued prayers.

    Like

  2. Thank you for the updates Cyndi.
    I’m often thinking of you as I have a friend here in Singapore who is battling cancer. It’s not easy at anytime but with COVID-19 it makes it even more challenging. She’s a fighter like you.
    All the best to you and your wonderful family from Singapore.

    Like

    1. Yes, this COVID-19 stuff does not make anything any easier at all! I prayers go out to your friend there with you. I hope she will find the strength to overcome her illness. Thanks for sending love from Singapore! Give your family my best! Love from Nebraska!

      Liked by 1 person

  3. I just don’t have the right words…I have always been in awe of your tremendous faith and positivity, but even more so now! I know that your life will be full and well-lived, just like always. That is what we all hope for, isn’t it? Sending prayers for you and your wonderful family…love you!

    Like

    1. Thanks so much, Mary K. Life has it’s up’s and down’s and wow, I really don’t like roller coasters. Hate them in fact. But my life is certainly one right now and no one will let me off. Ah well, at least I can hear the crowd below cheering me on!

      Like

  4. I was on doxorubocin for my first 4 rounds. No red hands or feet, but that first trip to the bathroom was a surprise!
    Mine wasn’t encapsulated though. Watch for peeling skin on hands and feet and little blisters in your mouth. (Ask for magic mouthwash if that happens).
    I’m glad you found doctors with experience in your form of cancer but sad they didn’t have better news. But you are a fighter and I know you’ll make the most of every moment! Sending you a giant hug!

    Like

    1. Well, since I just figured out how to answer these comments, it is the day after my first Doxil treatment. No red pee…yay. I drink 2.5-3 Li of water a day, so I pee a lot!
      I iced my hands and feet during the Doxil infusion for capillary constriction. My doctor does not believe in this, however, the infusion nurses were fine with it. What does it hurt really? It is very uncomfortable but non-invasive. If it helps, great; if not, it didn’t hurt anything. They are a little sensitive today but that may be because I had the ice on for so long!
      I talked to my doctor about Magic Mouthwash. He doesn’t believe in that either. I will just call his nurse if it becomes an issue. I have an onocology mouthwash that is a preventative that I use daily when on chemo to help with that.
      As for the new plan…keeping me as healthy as possible without getting me so sick on chemo. I am behind it. Had a heart wrenching thought that I will be on chemo for the rest of my life….which was hard. Doxil is still one that I can’t be on for long due to the way it affects the heart, so I will be on something new as of the fall, I am guessing, unless I have growth with Doxil at the 2 month period when I will be scanned again. AGAIN . Ick. I feel like I just did that. Oh wait! I did! Ah well, my new normal. Hope you are doing well and staying in and safe! Love you, my friend and fellow warrior!

      Like

  5. Thank you for the updates, Cyndi. As I read your words and process your thoughts, I continue to admire you and the way you are handling this. Thank you for your example and witness. Prayers for you will continue. Much love, Aunt Maile

    Like

  6. Thank you for the update and transparency. I’m thinking a lot about you. Your faith and strength is inspiring. I will continue praying. Hugs.

    Like

    1. Love and hugs all the way from Hawai’i! Awesome! I wanted to let you know we used your restaurant gift card for my birthday when all the kids were home on Feb 15. I was so sick then…so much shortness of breath, that I could really only listen to the conversations going on at the table. But I did tell them that this meal was from you all! Love you all and hope that all is going well with you and yours!

      Like

  7. Cyndi,
    Thank you for the update. I will pray for a miracle for you. Your faith is strong and so is your spirit to fight this. God bless you.

    Like

    1. Thank you! I miss you! I always enjoy when you are the lector for the daily Mass on the live stream. You do such a wonderful job! Thank you for keeping me in your prayers!

      Like

  8. Cyndi,
    Thanks for sharing your experience at Mayo. Our prayers continue for you daily. You are surrounded with God’s love from your family and friends. God works through His people. God’s blessings!

    Like

  9. Thank you for the update Cyndi. Prayers are continued for all of you. Glad to see you are going with the plan you are. The most aggressive is not always the best and I know you have given this much thought, consideration and prayer. We are all there for you. Love you

    Like

    1. This means a lot coming from you, Brekk. As you know as a nurse, what is the writing on the wall here. Miss you my friend. My prayers are being lifted for you and your co-workers as you work on the front lines right now. Please stay safe! I love you, my friend!

      Like

  10. You will continue to be in my prayers. Is there anything specific you would like to be included? If attitude is part of the “cure”, then you my friend are overdue miracles.

    Like

    1. Thank you for asking! My biggest concern is not really me, but my family. My sons, who live away from us, but especially Rich and Lily, who have to see and hear and deal with this horrible disease in me everyday. They are the ones I am concerned about most. Thank you! Love you, my friend!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s