Feeling Good!

It's time for an update. I've been reluctant to state that I'm feeling so good, since I know from past experience how quickly that can change. But I've been back on chemo for about 10 days, and so far I've experienced very minimal side effects. I'm tolerating the reduced Tarceva dosage well. Next week we'll find out if that lower amount is taking care of business. Frank and I go to NIH for follow-up scans and a meeting with my medical team.

It's a relief to receive the Avastin infusions at North Star Lodge here in Yakima every two weeks, and I'm fortunate that NIH ships the drug to North Star, so that offsets a lot of the cost.

I have felt well enough to resume some quilting, and am finishing up a cute one I started months back, before I started chemo. It is pictured above. Also, I have spent lots of quality time with friends, going to lunch and laughing, as well as spending time with Frank and the granddaughters. Every day I revel in the joy of feeling good. I've also been exercising more than I could in the past few months.

It has been such a beautiful fall--every day with sunshine is like a gift, and I've thoroughly enjoyed the colors and crisp air. We have created a Bird Bistro in the backyard: 2 goldfinch feeders and 2 large pinecones covered with peanut butter and bird seed. We will add more of these later. With these cold mornings we take turns going out to break the ice on the bird bath. The little guys are so thirsty! They seem to guilt us into taking good care of them. I wonder where they sleep at night and how they keep warm?

Wasn't it a luxury to have an "extra" hour yesterday when we turned the clocks back? It seemed I had so much done and it was only 11 a.m. Frank and I took advantage of the good weather and we put up our outdoor lights, and also cleaned out some frozen flowers. I think the neighbors may think we are rushing the season with the lights, but we will be glad to have it done when the weather turns colder.

Speaking of the weather, many of you know that Frank is an amateur meteorologist. Watching the weather on the evening news can be a bit trying, as he gets frustrated with the weather reporter who doesn't even give the highs and lows. I think the guy is in the Tri-Cities, and the report is taped earlier, but Frank has to do a lot of talking to the tv. His comment is often, "Uncle Jimmy would never have done it that way!" Long-time Yakima residents know Uncle Jimmy from his many years as a tv personality and weather man. Abbie calls Frank daily to get the weather report. She keeps hoping to hear there's snow in the forecast, but has been disappointed thus far.

We are looking forward to the basketball season which starts at the end of this month. Here's the link to the Zillah High School Schedule for all you sports fans:

http://www.zillahschools.org/sports/ZHS%20Sport%20Schedules.htm#bbb

Hope to see you in a warm gym somewhere soon!

Much love!

Gayle

Some Good News!

About two weeks ago I was back in D.C. with friends. I spent several days at the Cancer Center at NIH, while my 3 friends, Lena, Karen, and Bernice, went on a fast-paced tour of the city's highlights. They saw nearly everything they hoped to, but you just can't do it all in a week!

They toured the White House (East Wing) during the day, and the four of us had a special West Wing Tour that night. Because I had undergone a PET scan that day, the alarms went off as we went through security. Seems I was emitting a pretty high level of radiation! Took us an extra 20 minutes or so to get the all-clear, but it made for a very memorable visit! The radiologist apologized the next day, saying he had intended to give me a card that would have explained my radioactivity!

The results of my scans and tests were positive, though they came with a harsh realization. First, they told me there are no new tumors, and the ones they've been studying have not grown. The reality is, however, that I'll have to remain on this chemo combination for as long as I can tolerate the side effects or as long as the cancer remains stable. It hadn't quite sunk in before that they don't anticipate a "cure." They did lower my dosage by a third, with hopes that the side effects won't be quite so harsh as before. So far (after 2 weeks back on the Tarceva) I'm feeling okay, just tired with digestive upset and skin issues (rash, dryness, hair loss).

The second bit of good news came a few days after I got home: My Physician's Assistant called and said the radiologist rechecked the scans and thinks there might be a slight shrinkage in one tumor, about 1 mm. I was pretty elated!

We have been waiting to learn if the insurance will cover the treatments locally, with NIH providing the drug. Finally, on Saturday the mail brought Good News #3: YES, I'll be responsible for just a few hundred dollars per month--as opposed to a few thousand! Since it was still an unknown quantity before, I am traveling to D.C. tomorrow, just overnight, to receive my avastin infusion. Then I won't have to return until the week before Thanksgiving, when I'll get more scans.

I am so fortunate to be in this trial of these two drugs! And so lucky to be the beneficiary of the medical research and dedicated staff of the National Institutes of Health!

Thank you everyone for the prayers, the offers to help, and for every kind thought and deed.

Bless you all!

Gayle

Eight Weeks Into Chemotherapy

I've had four chemo infusiions of Avastin and have been taking Tarceva daily for nearly eight weeks now. They refer to those of us in this trial as the Avatars! I've been feeling fairly good, much better than about 3 weeks ago. This change may be due to the fact that the doctors at NIH have started me on thyroid meds. I'm much less fatigued, and often skip naps entirely. This is a big step!

My side effects have been relatively minor compared to some chemo treatments--fatigue, weakness, skin rash and acne, hoarse voice, digestive issues. While I haven't lost all my hair, it is definitely thinner. Last week my hair stylist attached a feather in my hair, in celebration of the fact that I still HAVE hair. Sadly, this morning the hair holding the feather came out. :(

On Saturday I'll leave for my 8-week check up at Bethesda's National Institute of Health. This time another group of friends will travel with me-Lena, Karen, and Bernice. Officially I'll be conducting their tour, although I won't always be with them. I have four rather full days at the clinic with scans and tests scheduled. But they will have several activity-packed days, and we will meet up in the afternoons and have dinner with Eric when he is available.

These will be the first scans taken since I began treatment in July, and while it is probably too soon to hope for any positive results, I'm hoping anyway. Hoping there will be positive changes in the tumors.

I had my Avastin last week at North Star Lodge here in Yakima, but am waiting to hear whether the insurance will be covering the treatments. There is an exclusion clause for trial drugs in the insurance policy. Both drugs are FDA approved. The only trial involved is the combined use of the two for certain kidney cancers like mine which don't respond well to just one. Even though NIH sends the Avastin to North Star, my cost for the biweekly visits would be about $1100! Each. The doctor here is appealing to Regence Insurance, but if they deny it, I'll go to D.C. twice a month. I can see why they say most of us are just one serious illness away from bankruptcy! And I'm one of the lucky ones: I have insurance!

My friends and family have been so supportive-prayers, food, specially made smoothies, ginger ale and gold fish crackers (a tried and true combination from a young chemo patient), homemade creams for my poor dry skin, special masses in my name, prayer shawls, flowers, laughs, berries, ice cream, hugs and more. And as Frank says, "Grandkids are often the best medicine!"

Thank you for your kind thoughts and deeds. I'll post an update once I have something to report from the tests.

Sincerely,

Gayle

My Newest Journey

This is a brief post to let you know that I will be starting chemotherapy treatments related to my renal cell carcinoma (HLRCC). I am so fortunate to be connected with the National Institutes of Health in Bethesda, Maryland, as without their research and diligent care I would be seriously ill by now. This research facility is a prime example of your tax dollars at work. The genetic link to this cancer was just identified in the early 2000's.

After three surgeries the doctors found a recurrence of "hot" lymph nodes just three months after my surgery in February. Another surgery isn't an option. Following scans last week, I have learned I am eligible to be in a trial that will combine 2 drugs, Avastin and Erlotinib. My first chemo will be the week of August 1. I will return to Bethesda every four weeks, with an injection done here locally after two weeks. After the first few months, the injections will be eight weeks apart for several months. I won't know how long the chemo sessions will continue until future scans and evaluations are done.

I'm feeling positive about this avenue, as the results of this trial have so far been positive. I'll be just the 12th or so person to be targeted for this type of cancer. It's rare--only about a hundred families worldwide are known to have it. Lucky, huh?

Throughout my dealings with these health issues I have felt love and support from friends and family. Your caring and prayers have strengthened and encouraged me. Thank you for all your caring and kindness.

I will update you when I have more to share. Love to you.

Gayle

P.S. If you have questions you may post on this site, or email me at fgwing@charter.net

Hello, strangers! It's been quite awhile since I updated my post, and I wanted to let you know how my friend Kim is doing, as several have asked.

She's had such a long, tough road. Her surgery in December created some frightening effects. Her bowel was accidentally punctured, resulting in a terrible infection throughout her system, as well as abscesses. For months she has been receiving antibiotics daily via IV's, here and in Spokane. She has gone back and forth to Spokane for treatment and more surgeries. She's lost a LOT of weight and been weakened.

Incredibly, though, she is feeling a bit stronger. She is so determined and she's going stir-crazy from being unwell so long. She actually asked if she can try to resume her cleaning routine at our house, starting out slowly! It's so important to her to be doing!

The bank has notified them they need to be out of their house in about 6 weeks. They've been looking at houses to rent. If you know anyone who has a reasonably-priced rental--3 or more bedrooms--in the Yakima or Selah area--please let me know. They do have an old dog--a sweet yellow lab. As Kim says, "He really only moves when you tell him to."

Thank you for your continued thoughts and prayers for her. If you feel inclined to donate to her account, it is still open at Key Bank, in the name of Kimberly Castro, or you can contact me.

Much love to you, friends.