Tuesday, July 10, 2018

Beth and Ken's Not-So-Excellent Adventure

It's a cruel, cruel summer

~~ Bananarama

Go to Florida, they said. It'll be fun, they said.

It usually is, but not this time. 

To make a long story short, Ken was feeling a little crummy for a while; he had a swollen lymph node in his neck and got it biopsied, and the report was "benign, nothing to worry about." He was going to have a follow-up appointment after we got back from our Florida vacation. 

Ken's condition worsened during our week in Florida, enough so that we decided to leave a day early. He had an appointment with his doctor on the Monday after we got back. We didn't even make it to the car. 

When he collapsed on our way out, I called 911 and they got him to the small community hospital in New Smyrna Beach. He was in pretty bad shape but they stabilized him enough to get him to a major hospital that could address his situation better. We went to Shands Hospital at University of Florida Health System in Gainesville. 

He was eventually diagnosed with a very rare form of Non-Hodgkin's Lymphoma: leukemic double-hit follicular lymphoma. They had never seen a case of it at U of F, a major regional hospital; the oncologist in South Bend who will be seeing him has never treated a case of it; there have been only about 20 documented cases of this. It's rare enough that the medical team here at U of F is planning on writing a paper about his case. 

A month later after our drive down to Florida and after three weeks in the hospital and a round of chemotherapy, we are heading home. There are five more cycles of chemo ahead of him but I have no doubt whatsoever that he (and we) will make it through this. I've had to remember my Hematology training from three decades ago but I've never been so grateful for my training. It helps immensely to understand what the doctors are saying and to know what is dangerous and what isn't. Well, it's all dangerous, but some things are dangerouser than others. 

The family members and friends who have helped us out through this have been wonderful. We chose not to make it public immediately because we had enough going on as we dealt with all of this and weren't prepared to answer a lot of questions. But we will appreciate every bit of support as we go forward and work on getting Ken into remission and back to full health! 

We are strong, we are positive, and we will beat this!


  1. It is a cruel, cruel summer! So glad he has you nursing him. All my good juju coming your way. Love you both, so muchy!!
    Hugs, Toni Sue

  2. ...I only just happened to internet today and BAM..! I am glad that you know what you guys are up against and are strong enough to get through this battle... Renee and I are sending you both our love and wishes..! Love & Rockets!!!

  3. Oh my lord! You both have my most strenuous well wishes! Let me know if I can be of any assistance when you get back! Yard mowing, you name it!

  4. Oh my goodness, here am I at long long last getting on to your blog and this is the news I find...must all be meant as the more of us by your side the more supported you will feel. I am sure we will be holding you in our prayers, thoughts, and hopes...if anyone is going to beat this horrible time it is you two......hang on love, and keep us in the loop....now that I have at last found your blog again I will be popping in and out for latest news xxxx

  5. Stunned beyond words. My thoughts are with both of you!!!!

  6. Carlos and I are thinking of you both, and sending masses of positive energy!

  7. All strength and hugs to you, my fun and funny friends. I’ve never known of more joie de vive than you two project, and that will make all of the difference now.

  8. You and Ken "got this". I'll be keeping you in my prayers. Sending good vibes and well wishes.

  9. Ken and Beth - Cindy's and I's most sincere positive thoughts and lots of positive healing wishes going out to you both <3

  10. Hi Beth....at long long last I have found your blog...it's been such a long time, yesterday my neighbour who is a great one with I pads showed me how to find everyone, I have been so excited..I have spent the last hour catching up with my favs. So sorry that I have not kept up but that's the reason...Now watch out for my comments ....please give Ken my love, I know he won't know me but I know him ! Prayers being sent asking for a complete recovery xxx


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