Monday, September 23, 2013

Still Here and This Week's Travel Plans: CTCA Here We Come

Just so ya know, I am still alive. I seem to avoid the computer a lot lately, for some reason. Perhaps because it is a reminder of how little I seem to be capable of doing proficiently anymore. My hands shake now, worse than ever, which makes typing somewhat frustrating for me. I've always had shaky hands (as my students know - they were happy to come to my defense and inform the uninformed when questioned, "that's just the way Mrs. Brigman is...it's the way God made her"). Wellll, this shaking is more than the way God made me. And it comes and goes. I'm like a 90 year old woman, in more ways than one. But I will attempt this quick blog post, which will involve lots of backspacing and editing, I am sure.

Not a lot has changed since last blog post, including our unfinished bathroom. Yes, we have plumbing and flushing toilets, so a now untiled concrete floor, missing tile around vanity, and missing trim...we can live with. Of course, something not mentioned in the last blog post was the fact that our hot water heater decided to die within a couple of days of getting our plumbing repaired.  Luckily our sons caught the flood in the garage before it got out of hand and prevented a much bigger mess. 

Wish I were as easy to repair as our plumbing! I have not had the bottoming out episode of the last round following chemo. I believe the steroid I am on is helping, plus Dr. Beck has backed me off of Afinitor - every other day now. That, I believe, is the hardest drug I may be on. If I am going to throw up, it's usually not long after taking Afinitor. I am still taking Xeloda, 3 tablets, twice a day, 2 weeks on, 1 week off, plus my every 3 week infusion of Carboplatin. I begin my week break from Xeloda tomorrow, so yay.

I don't know for sure which drug to blame, or if it's still the effects of the whole brain radiation, but my fatigue is chronic and non-stop. Each week when I go for lab work and check up they ask my pain level (always 0) and my fatigue level (usually 8 on a 1-10 scale). Yuck. I make it from sofa to chair to bed to chair to sofa. Not a lot of vertical, on my feet time in my life anymore, which is so not like me. Thankfully, we have had some amazing weather lately, so I have been spending a crazy amount of time sitting outside. It's so much more pleasant than my dirty house.

Biggest news for the week though: We leave for Cancer Treatment Centers of America on Thursday. I had hoped to go to the center in Tulsa, which would be maybe a 2 hour drive from here. However, they do not take my insurance (BCBS). Oddly, their center near Chicago DOES take this insurance. Not only that, but they arranged and are paying for our travel and hotel...up to 6 days. Seriously!? I asked how they could afford to do this and was told they have a foundation - anonymous contributors, employee contributors, and others. Very nice. So how could we not go? 


I normally love flying, but am not looking forward to this time. They have arranged a wheelchair, so I will get to experience a different type of air travel. Ugh. Independent me is not looking forward to this.

Anyway, please remember us in your prayers. I don't know what to expect at CTCA, and am hoping for some new info, especially in relation to my side effects, longevity, and any holistic treatment that might help.

I will try and do a better job of posting to this blog. I just need to learn how to shorten these things. I'll be the first to admit that I can be too long winded. Typical teacher.


And a big PS: Thank you to the many, many cards, notes, meals, groceries, and kindnesses that have shown up in my mailbox and doorstep in the past few weeks. I continue to be flabbergasted and thanking God for so many kind friends and students. This is a crazy time in my life, one I hoped to NEVER experience (and hope none of you ever do), but I have felt so blessed during it all, thanks to your support and kindness. You have no idea. Much love to you all. Patti

8 comments:

  1. So happy to hear from you! You are in my prayers daily and I am very excited about your trip. I hope that they have some helpful information to share with you. I will be interested to hear about your experience there. Traveling mercies!

    ReplyDelete
  2. Thanks for sharing this nice info expect some more in near future.
    http://infofaisalabad.blogspot.com/

    ReplyDelete
  3. Patti, I have LMS of IVC. 7 yrs of chemo, 2 operations. Still working (about 60%)
    and playing golf ...some great days some...double bogeys. :) I eat blueberries every day along with resveratrol capsules, broccolli. about 20 other foods and nutrients. I found that searching the Scholar pages on google. http://www.jimmunol.org/content/191/8/4141.short

    brings interesting reading. It helps to build my belief that answers exist for us.
    if we just keep looking...http://www.sciencedirect.com/science/article/pii/S0300908413000709

    Traditional Doctors often are too busy to know. We have to help them. Augment treatment.
    Scholar pages from 2012 forward show great "conclusions" in the abstracts that are offered to us. Resveratrol, broccoli sprouts, Modified Citrus Pectin, tumeric,,,great starts...

    ReplyDelete
  4. Your trip is so fine and I really like your discussion in your informative blog. I think it’s a very fine and benefitted way for people travelling encouragements. I am new site user in your blog. But I collect a many benefitted travelling clues through your discussion. Your blog is so benefitted for your site users. Good work and thanks for nice sharing.

    ReplyDelete
  5. Very informative post you want to go Tulsa that is such a wonderful place to see. I have been visited there many years ago. It is the Oklahoma's second-largest city for a haven of Southern comfort and cosmopolitan style. Tulsa boasts world-class cultural attractions, including the Philbrook and Gilcrease Museums, and plenty of interesting things to do.

    ReplyDelete
  6. Your blog is very use full for all who are planning their trip far from the world and especially to Tulsa. Distance between Tulsa and Chicago in miles and kilometers. Recently I visited there with my team and we see their lots of points that attract to the tourist. One of the most places that inspired me is there gift market. The gift kiosk at the Tulsa a wonder full selection of everything at Oklahoma. A variety of Oklahoma, Tulsa and surrounding area books, photographs, videos, and children’s items and other delightful finds for friends and family also.

    ReplyDelete
  7. Tulsa is the second-largest city in the state of Oklahoma, Last year I had a chance to go there with my family. It was an amazing experience for us. We used to visit Gilcrease Museum, Philbrook Museum of Art, Tulsa Zoo and Tulsa Performing Arts Center there and I think these are amazing attraction in this city, Next I am going to niagara falls trip with my friends.

    ReplyDelete
  8. Your provided information is very helpful for all blog readers. Tulsa is a best state to visit I also have a great experience of Tulsa trip. It is a dynamic city known for a variety of bustling urban districts, exceptional dining, an unsurpassed love of the arts and one of the largest collections of art deco architecture in the nation.

    ReplyDelete