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.

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7 responses to “Spring Update”

  1. Anonymous says :

    Keep your heart open, head hight, and be joyful and thankful for each day. Lots of love from Roy and Martha.

  2. Linda ward says :

    So lovely to hear you are keeping well. My sister wasn’t so lucky and died six days after her diagnosis in January this year. It’s helped me make the most of everything. You seem to be doing that too. Best wishes from England. Xx

  3. Amy Clackum says :

    I was glad to see this post – I have been thinking of you and TIna.

  4. Carl says :

    Keeping you both in our prayers. Keep your spirits up : )

  5. Ali tackles says :

    Hi ken, I hope things are going well ?
    I’ve read some of your blogs , my son was told last April that he has a brain stem tumour, and they monitor it for changes. They say nothing has changed , but physically now he finds had to walk , has no body strength , double vision and a clumsy gault . I feel as if we’re all waiting in a time bomb :(( and feel I want to do more to help . He doesn’t like the specialist as he so negative and won’t do any treatment not even steroids…. I don’t know where to go next so frustrating as my own doc has referred us bAck to private specialist again .. Just some advise from you would be very grateful. God bless you . Alison

  6. Anonymous says :

    keep the fight

  7. Jadranka Fumic-Belamaric says :

    My husband, 57 years, operatet Gliioblastoma IV in December 2012 in Heidelberg, did not want radiation, took Temodal for two and half months, but the tumor grew up. Two days ago he started the infusion with Avastin and Irinotecan and we do not know will it work or not.
    Thank you for your diary – A Glioblastoma journey. You help us a lot.
    We live in Germany, but are from Croatia. My husband was an opera singer. He can still sing. I red a lot about curing with cannabis oil, but the doctor says it is not really useful. What do you say about it? We continue to follow your diary.
    May love and God´s blessings keep you always,

    Jadranka and Miro Belamaric
    Karlsruhe, Germany

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