marygaston.com

Friday, June 12, 2009

Hello, Old Friend

Last evening, I had my first (well, third, but we'll get to that) infusion of the drug Remicade. The wonderful Mayo docs feel that this may be a key step in finally getting whatever disease process this is fully under control. Wikipedia says:

Remicade works by blocking tumour necrosis factor alpha (TNFα). TNFα is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Remicade blocks the action of TNFα by preventing it from binding to its receptor in the cell. Remicade is an artificial antibody.

This drug, and ones similar to it, are used to keep a range of autoimmune type diseases under control. I first had infusions of Remicade 2 years ago at the Hospital of the University of Pennsylvania; however, at that time, I was just way too far gone for any medical remission. Because of my prior trial of Remicade, my current one has a measure of uncertainty: people who use Remicade and then stop usage are often unable to return to the drug because the body may build up antibodies to the drug itself, causing allergic reaction. So, basically, we had infusion fun last night with lots of benedryl, eppe pin, tylenol, and prednisone sitting nearby (and one very nervous on-call resident hovering around way more than usual), but so far no drama.

There is a possibility of a delayed reaction in the next couple days, but no accute reaction is a good sign :) So, with Remicade looking good, me eatin' real food (so funny what you get congratulated for in a hospital - "Wow, you ate that whole bagel. And you took 5 walks down the hall today!" I mean, it's comical really), I am looking at a Sunday or Monday release back into civilization. Thanks as always for your support - Mary

Thursday, June 4, 2009

The New Big Thing

Hi friends, I will be having a big surgery today at the Mayo clinic.  We have faith that this will mark the end of spontaneous infections; in addition to the surgery, I will be starting on medications that are often successful in controlling Crohn's disease.  Why another surgery? (Why another infection?) -- nobody really knows.  Maybe the whole problem was not taken care of last fall, maybe I should have started these medications earlier, maybe I didn't wait long enough between my surgeries in October and December to heal completely.  "Maybe" or "Possibly" are words you learn to live with.  Despite all the uncertainty as to causes and whys, I feel (more honestly than I have in a long time) that today is a positive step toward SUSTAINED health.  I can anticipate one more surgery in 6-12 months, but expect good health in the interim and beyond.  Thanks to all who bother to read and wish me well.  The support of friends has been wonderful and integral to getting through this experience.  I think I tend to sound a bit morbid -- and hey, I'm no little miss sunshine -- BUT, I am really excited about the possibility of riding bikes, hiking, taking photographs, and even just working in the near future WITHOUT PAIN and without the nagging feeling that it's about to all fall apart.  Life is hard and rarely gives you all you want, but if I can find a way to do the things I love, and to be with the people I love, in a stable and sustained way, I should be incredibly grateful. With Love - Mary

Wednesday, May 27, 2009

June Surgery At Mayo

Mary was discharged from Mayo Saturday 5/23 following her week of medical tests. Her surgery has been delayed until June 4th or 5th. She will hang out in Baton Rouge in between hospital stays and spend time with her family. She will fly back to Rochester, MN for her surgery next week at the Mayo. Not sure the address yet - will keep the blog updated when she has an address/room number for the next surgery.

-LM

Friday, May 22, 2009

Take Steps! CCFA Charity Walk!

Mary and I will be doing a charity walk for the Crohn’s & Colitis Foundation this summer in Seattle. The walk will be at Magnuson Park on July 18, 2009 at 4:00 pm.

We would love if you joined our team (Sounders IBD) or showed your support by making a donation. I know money is tight but this is a truly amazing organization.

Take Steps Page:
http://online.ccfa.org/site/TR/Walk/Chapter-Northwest?pg=entry&fr_id=1266

Donate or Join our Team (Sounders IBD): http://online.ccfa.org/site/TR/Walk/Chapter-Northwest/876963180?pg=team&fr_id=1266&team_id=32971

Tuesday, May 12, 2009

More Mayo Please

After three admits to the ER in Seattle Mary has decided to voyage back to the Mayo Clinic in Rochester, Minnesota. She will be traveling there on Thursday May 14 with her Dad to seek the opinion of their expert staff. She is home in Seattle now resting before her trip on Thursday. Mary was discharged from the ER in Seattle this afternoon and is in good spirits. Her Dad will be flying up to Seattle tomorrow night so they can make the trip to Minnesota together. Please keep her in your thoughts and prayers this week.

Thanks,

-Logan

Thursday, May 7, 2009

Seattle Surgery / Seattle Photos

Mary had a few minor surgeries in Seattle this month. She had some unexpected abscesses in her lower abdomen that needed to be drained. We are currently at Northwest Hospital where she has been treated very well by the staff here. The Surgery was relatively minor and we hope to see progress over the next few days.

Up until last week Mary has been feeling better and better each day. Her energy level has been good and we have been getting out and doing a lot of things around Seattle like going for short hikes and walks around Greenlake, bike rides, going to the Seattle Sounders FC games, volunteering, riding the motorcycle, critical mass, kite flying, exploring the peninsula, planting flowers and much more.


You can check out some of our photos at our flickr sites:
Mary’s: http://www.flickr.com/photos/kiteflier/
http://picasaweb.google.com/marygaston/LetSGoFlyAKite

Logan’s: http://www.flickr.com/photos/linconllogg/


Thanks for all the calls, cards, emails and thoughts of encouragement.


-LM

Tuesday, April 28, 2009

CCFA Night at Safeco Field: Angels vs. Mariners, May 19, 2009

http://seattle.mariners.mlb.com/sea/ticketing/special_group.jsp?group=CCFA

CCFA Night at Safeco Field Angels vs. Mariners Tuesday, May 19, 2009 - 7:10 p.m.Featuring Mike McCready of Pearl Jamplaying the National Anthem Enjoy some Major League Baseball while supporting a great cause! Catch the Mariners at a discounted price, exclusive to you through this online offer. A portion of the proceeds from tickets purchased through this special offer will benefit the Northwest Chapter of the Crohn's & Colitis Foundation of America. DEADLINE TO PURCHASE: Monday, May 18 at 9:00 a.m. Game Date:• Tuesday, May 19 vs. Los Angeles Angels - 7:10 pm Pricing:• $15 View Reserved (normally $20)• $32 Field Level Seating (normally $40)• $7 from each ticket sold benefits the CCFA!
***Special Note for Take Steps Participants*** In order to credit individual or team fundraisers you must send an email with the subject: MARINERS NIGHT to Jennifer Simmons at jsimmons@ccfa.org with the following information:1. Ticket purchaser name2. Number of tickets purchased 3. Take Steps Team or Participant name you want credited