Archive | April 2013

Time May Be Running Short

"Angst in Red" — A painting I did in college, early 90's

“Angst in Red” — A painting I did in college, early 90’s

It turns out that maybe my last post prematurely announced that I’m doing well. Reconsidering the MRI scan and growth of the tumor, I understand now that doctors think I could have a matter of weeks to live. It’s probably time to call in hospice. That sounds pretty bleak. I do plan to move forward with this ketogenic diet. We hope that it will restoe some vitality, mental clarity and help control seizures, symptoms and headaches

I have known for a long time that my two to five year survival odds were low just by having this cancer, but to hear that I could be so close to expiration could be quite a shock, if I believed it. Similar to when I heard my first diagnosis, it’s a little difficult to believe that Death  may be lurking so near.

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April 2013 MRI Results

Recently, I’ve had more frequent headaches in the morning & other symptoms, so we moved my MRI from mid-May to yesterday.

Results are in:

There is no new swelling of the brain. The tumor has increased slightly in size — nothing unexpected or concerning, really. In a way, not bad news. We will likely discontinue chemotherapy. We are going to move forward with the Ketogenic diet hoping that it will help reduce tumor size. My oncologists don’t expect this to happen, but we are encouraged by studies and  testimonials we have investigated. Here’s a video for anyone interested in more info:

Ken Lynne and Sandy

Ken, Lynne and Sandy

Dining with Chefs, Loosening Restrictions

Over the last year or so, I have become friends with my local butcher/fish monger, Lynne Sawicki, owner of Sawicki’s Meat Seafood and More in Decatur, GA, when I redesigned her website (http://sawickisfoods.com/). She offered to cook for Tina and I in our home and we took advantage of that offer last week. We decided that we could loosen the self-imposed ban on meat and we ate lamb and some yummy desserts, not worrying about sugar. I’m back to avoiding sugar, but the ketogenic diet will recommend that I do eat meat and fats and oils. Lynne has worked in some of the best kitchens in Atlanta, including Partner’s, Indigo, Alon’s, The Flying Biscuit, Nava,  Floataway, and Bacchanalia. It was a fantastic meal and evening.

Meal Train

The Meal Train has been a very helpful resource for us. Since I’m the family cook, when friends and neighbors sign up to bring us meals, it takes a lot of pressure off Tina and I worrying about what’s for dinner. Since I am Sawicki’s web developer, I have to take this opportuniy to promote them and their excllent Prepared Meals To Go. More information here on her site: http://sawickisfoods.com/prepared-foods/http://sawickisfoods.com/prepared-foods/.

Too Much Information / Full Disclosure/Too much information / No Time for Embarrassment

Since I’m sharing my story, I may as well share it all without reservations in case it’s helpful information to others. Rushing to make it to the toilet last week,  I was unable to make it and crapped my pants. Not a pleasant story to share and we don’t think it was specifically related to my tumor but I suppose these things can happen. The MRI revealed mild ventriculomegaly, slightly increased from the prior scan. This can cause incontinence, abnormal gait and dementia. This pesky tumor is becoming a nuisance.

Almost daily I have bouts of weakness and shaking where I need to sit or lie down to avoid falling. The steroids make my muscles weak. These are quite scary for Tina. It is difficult and tiring for her to move me to a safe place to land. I had an episode tonight which she thinks was a seizure, which maybe it was, because I was unresponsive and shaking while lying down after trying to go for a walk,  but  I tend to not want to admit that I may be having seizures.

The Foulness

“The Foulness is what I have termed an unpleasant taste/smell sensation that I experience daily. It’s an unpleasant, metallic taste/smell. When taking chemo, a common side-effect is that taste may be affected. This Foulness of which I speak is not when I eat something. It appears almost anytime. It could be triggered during a walk or anytime. It’s very unpleasant.

My blood counts are good. My spirits are high. My support network is incredibly helpful and uplifting. I can’t complain too much.

Next Steps

I will begin the ketogenic diet soon. I may have the option to receive compassionate use of CDX-110, which is a drug in clinical trials. I would not be part of the clinical trial, but may be approved for compassionate use. This is a drug that we have had our eye on for quite a while.

Spring Update

It is mid-April and the weather is beautiful here in Atlanta, Georgia (as long as pollen everywhere doesn’t disagree with you.

My previous dose of chemo (Lomustine) was about three weeks ago, which is the time period where we saw my blood levels dropped last month and I had to have a platelet transfusion. My numbers seem to be holding pretty well this time. There were some slight drops, but nothing concerning and platelets are fine.

Side Effects and Challenges

I have occasional headaches and pressure in my head which suggest swelling in the brain. To remedy this, I increase my dosage of steroids. The problem with this solution is that steroids have a whole set of unpleasant side-effects, including:

  • muscle weakness. Tina and I take several walks daily, but weak thigh and calf muscles  make these walks quite a chore. (No one said recovery and acheeiving good health was going to be easy, so I carry on and am glad we have pleasant nature walks near the house.
  • voracious appetite. The steroids make me want to eat a LOT. Self-restraint is tough. I over-eat. My weight is fine, but I see how it could get out of control. At least we are eating good food. I often repeat Michael Pollan’s quote to myself, “Eat food, not too much, mostly plants.”
  • Blackouts. I’ve had some bouts of feeling unsteady, almost like I’m going to black out. We’re fairly certain these are not seizures. I am conscious of what is going on and know I just need to sit down for a few minutes to recover. Tina can see these episodes coming on and it’s a little scary for her. As long as I can communicate that I’m ok, she is able to not panic and help steady me.

Fundraising

Tina and I were asked to participate in a video/photo shoot for a fundraising event for the Atlanta Cancer Care Foundation which provides some financial assistance for patients like me. The event is sponsored by the Legal Function of The Coca-Cola Company. So, Tina and I shared some of our experiences and these video clips may be used in a video at the fund-raising gala at the World of Coca-Cola.

Next Steps

I’ll have another MRI in mid-May.

I feel as though things are going very well.