Getting Started and Saying Hello

The first post is always the hardest I think.  The introductory post.  The show of who I am and what this blog is to anyone who might be reading.  It’s like the first day of class when you have to stand up and tell a large group of strangers that might not even be listening to you 5 facts about yourself.  Well here goes nothing:

I am an Aerialist, Mother , Wife, Sailor, Explorer, Failure, Achiever, Believer, Freedom loving seizer. 

My husband was diagnosed with mantle cell lymphoma in February and my entire life was turned upside down.  This is a very rare cancer that has a survival rate of 5-7 years.  I seem to continue to push off just how very real that idea is. 5-7 years…that’s all.  That’ s the run of most successful t.v. shows. That’s 1/16th of a normal life span. That’s my youngest daughter not even reaching high school.  That’s nothing but a blip in a lifetime and that is all he has left.

The first course of action was for him to quit his profession of 17 years.  Can’t really get constant week long chemo treatments and work 12 grueling hours a day as an electrician.  He was originally fascinated by electricity and wanted to know all about electrical theory.  Well as we all know, once you have experience in a paying job it’s kind of hard to leave and start again at the bottom of some new trade that you know nothing about.  So he stayed in a job that started as a love and quickly turned into an occupation that stole his time, his family and his life.  Although he had just been told that he had a fatal disease and was going to die he had a sudden lift of stress.  His eyes were happier and when he wasn’t in chemo or recovering from chemo he started pursuing things he actually loved. His sailboat.

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Now we aren’t rich by any means.  Quite the opposite actually but awhile ago my husband saved up some money and bought himself a 30ft fixer upper boat for a very small sum.  This is his new focus, his new goal, his new love.

The second course of action was me quiting my job.  Although my work was being extremely understanding of my situation my husband was having a bone marrow transplant coming which he was going to need 24 hour help with from anywhere between a month to six months.  It’s just not possible to be gone half a year from a job and still expect to work there when you come back.

Now that I am home full time taking care of my husband I figured it would be the perfect time to be a full time mother to my youngest, and this to me means homeschool.  Something I have always wanted to do but just couldn’t with both my husband and I working more than full time.  On top of all of this change my husband and I got the crazy idea that we could live on a sailboat and sell our house to travel the world.  Now I’m not sure if this is just a dream or if it will manifest but as it stands now that is what we strive for day and night.  An adventurers life, not one of need and can’t and must but want and can and will!

That’s where I start and leave you.  This is the beginning of  a different life, a different view. A world anew. Wish me luck, craziness is sure to ensue!

 

 

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4 thoughts on “Getting Started and Saying Hello

  1. So glad to have found you here. My husband also has mantle cell, diagnosed in late May, 2014, and is in treatment. I have begun, haltingly, to write about this big curve that has come our way. Glad to meet a fellow traveler. Take care, Sally.

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    • Glad to meet you too! What treatment have you guys decided on? I know so much information is pouring in your way right now. Is he going to get the R-Hyper CVAD? Was it stage 4? Will he qualify for the Bone Marrow Transplant? I’m just interested to know because it’s such a new cancer that they don’t really know what the best course of action is (which is scary in it’s self). It’s just nice to hear from someone else in my position. Thank you.

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  2. Tom is 76, so treatment approaches are different at his age than with younger patients. I haven’t heard of any transplants done for folks his age. However, his MCL is stage 2 (also quite rare, since it isn’t often found until stage 4), with no bone marrow or other organ involvement. He is being treated at Mayo Clinic’s Florida location in Jacksonville (incredible team and facility there), with 4 cycles of rituximab and bendamustine followed by external beam radiation in the localized area of his left lymph nodes and a few nodes on his skull. He has been through two of the r-benda cycles so far. They are each 28 days apart. I have read that with younger people there are more different protocols leading to stem cell transplants. Luckily, Tom is otherwise extremely fit (mountainhiker, jogger, free weights, etc.) and so doesn’t have heart or other health issues like so many his age might.

    One thing I learned is to not believe a whole lot of what you read on the internet. The research on MCL is intense and game-changing breakthroughs are coming fast and furious, so be sure you’re connected with a great medical team. By the way, we have friends who had a dire cancer diagnosis three years ago. They made the decision to leave their home and live aboard their trawler. They ply the waters between the Florida coasts, Georgia, and Tennessee and have oncologists in at least three cities, so they can rent a car and get themselves to chemo, surgery, or other treatments as necessary. I have a fabulous collection of sunset photos from them. One of my favorites is of wild horses on the beach at Cumberland Island, Georgia. Best wishes to you and your family. I’m glad we connected, too. It’s a small club.

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