Around the visit, a number of other events took place:
- Before departing on our flight at 12:30 PM, Rick Eastburn picked us up and took us to the Sunday morning breakfast. This is the same folks that brought breakfast to our house on August 12. It was a wonderful time. Rick then drove us to the airport.
- We had dinner with my good friend, Yael Wurmfeld, on Sunday. I have known Yael since 1974 when she and I and my first wife all became close friends at Green Acre Bahá’í School. Yael has gone through numerous very serious illnesses in the last 20 years but continues to have a very positive outlook on life.
- We visited and prayed at the Baha'i House of Worship in Wilmette on Monday afternoon. We also saw our friend Jessica Gaines, who currently works there.
- We also stopped by the Bahá’í
Because of my leg brace/cane, I qualified for wheel chair assistance at the airport, which made the security delay significantly less and eased the journey to the gate. It was kind of fun to get wheeled around. We stayed with Dave and Dixie Rouleau, Bahá’í friends in
We were at the
- Two different medical doctors met with us and indicated that they agreed with the conventional treatment protocol outlined on Friday by my oncologist. They also said that additional effectiveness could be obtained by diet, supplements, exercise, and attention to emotional/spiritual needs.
- They took blood samples in order to tailor supplements to my body chemistry. Also part of this testing is saliva samples to be taken at 3 specific times during a 24 hour period.
- We were given an initial list of recommended supplements that will be fine-tuned when the blood work and saliva testing is complete. We opted to purchase some of the supplements and do some further research on others. We are also reviewing the recommended supplements with our oncologist.
- A dietician met with us and oriented us to a recommended diet, which is a fairly rigorous mostly vegetarian diet.
- A physical therapist met with us and provided guidance regarding the ankle sprain from last week and an exercise regimen to further strengthen my right leg.
- A psychologist met with us to explore our emotional/spiritual state and needs.
All in all, it was a very full couple of days and we are still processing what we heard. Our friend (and part-time Marriage Transformation worker) Joyce Ashman picked us up at the airport.
2 comments:
The rest of the story…
Going to Chicago was good on many fronts. We discovered we could still travel even though hampered by physical limitations, IV bags to get through security, me having to drive in Chicago, needing to find a home to stay in… It was exhausting, but also empowering. I was grateful Craig was willing to not stress his ankle/leg and do the wheelchair/electric cart (yes, I got to ride for the arrival leg in Chicago!)
Part of the purpose in going to Chicago was to get some more straight-forward guidance on nutrition and supplements for brain cancer. I was feeling overwhelmed with all the guidance on the topic. I must say though that I’m not sure how far ahead we are on that front. It’s going to take time to figure out all the recommendations and then work them out with the doctors here in Cleveland. Part of the challenge is that there just is very limited research data on most supplements…and when alternative care and allopathic care bump up against each other, they are sometimes not compatible. But, I guess we are still on the fact-gathering path as best as we can be! And, Craig gets a legitimate reason to spit…only into a jar!
Seeing close friends Viki and Yael made the trip extra-special. Visits are far between, but when we are together, it’s like there’s been no time apart. I also appreciated having the chance to get to know Dave Rouleau, our host, more than just through email. He has a great sense of humor, and we are collaborating on a project to help married couples (he works at the Bahá’í National Center in the community counseling department), so it was a good opportunity to consult together. Dixie was great to fix Craig eggs in the morning and share their blueberries and bananas. We also saw a few other dear ones in stopping in at the National Centre…nice to match up Ellen Price with her name…she has been a long-time email partner.
It was wonderful to be at the Bahá’í House of Worship. It’s such a peaceful place to sit and meditate and pray. Nourishing to our hearts and souls.
After packing Saturday and on the go all of Sunday-Tuesday, when I arrived home I was dropping from fatigue. Craig can’t lift suitcases right now due to the IV line in his arm, nor can he drive. I’m in an ongoing inquiry about how to support him and yet not end up in ill health myself. I’m snatching moments of rest, but my inner reserves are depleted. When we are with medical personnel, for the most part the focus is 100 percent on Craig with brief input from me (I’m the keeper of the details!). There is little structure in the medical system to check on how the caregiver is doing…nor of course offer solutions (although at times in the doctor’s offices, I lay on the exam table while Craig sits in the chair!). While I know my wellbeing is vital in support of him, after two months of crises, I’m wondering what I could have done differently? At least I haven’t lost weight…that’s one of my key signs of being in trouble. And I got to the chiropractor on my return! The psychologist up at the Block Center suggested that I see a counselor for my own well-being. I’m left thinking…and where do I fit that in right now?! (Note from Craig…it’s a priority and it can be fit in.)
Natalie
Thank you for these links. I've added Krista's blog about her experience with GBM to my "Useful Links" list. You're not intruding..
Craig
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