Monthly Archives: May 2012

Back From UAB

Our visit to UAB was long and tiring but good..  They wanted to all the usual baseline testing to prepare for the XL765 clinical trial.  Gorman had to have another MRI; he soooo hates those things.  But it was good because it was beautifully clear, praise God.  We got home last night and now we’re both running around like crazy trying to get everything done before we leave early Saturday morning to go visit our kids.  Yipee!   According to weather.com, we will have cool and sunny days in both Santa Monica and Ft. Collins.  That will be a relief from Fairhope, where the humidity has arrived, along with 90 degree days.

Gorman continues to feel good, with times of not so good (a little fatigue, a little nausea, then it passes).  Of course that is discouraging to him as it’s been five weeks since his last round of chemo but I keep telling him that all the printed material says this could continue for another year as a result of radiation and chemo, plus that ongoing five-day dose of chemo each month.  That good MRI was very encouraging and we keep focusing on that.

Our dear St. James Episcopal Church friends have started a prayer ministry called “Stitches of Prayers” and Gorman is one of the first to be blessed by this ministry.  They assembled and stitched a throw quilt for him that included long floss ties in each square.  At last Sunday’s service, folks came forward to tie a knot while praying for Gorman or they laid hands on the quilt and prayed.  It’s the most beautiful and touching thing you could ever imagine.  Gorman and I both teared up looking at it.  It’s a good thing we weren’t at church last Sunday as we both would have been sobbing.  It’s done in shades of browns and greens, fabrics printed with leaves, trees and best of all, fish – so appropriate for Gorman!  That quilt of prayers will make many trips back and forth to Birmingham and will serve as a reminder of all the prayers being said for us.

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A Week of Reprieve

Our original schedule was for Gorman to take his heavy duty doses of Temodar this week but he gets a reprieve. The folks at UAB told us to hold off for a few weeks so he could take it along with the trial drug, XL765. In fact, I jokingly accused Gorman of deciding to do the clinical trial so he could put off that Temodar but he denied it. Anyway, he’s enjoying walking everyday, eating and feeling good. We will go to UAB next Tuesday, May 29 for baseline testing; just MRI, labwork and such. Then we get to go visit our children for nine days. We get back from that trip on June 11 and leave the next day for UAB, where he will have several days of treatment and monitoring to make sure he’s tolerating the drugs. We don’t know that this will work for him but we’re hoping and praying.

A New Clinical Trial

Well, we only thought we were settling into a new normal routine. We received a phone call Monday fromUAB saying a slot had been opened in a clinical trial called XL765. After two days of agonizing over this, Gorman decided to do it. This is a study on a drug that inhibits the molecules that lead to tumor cell proliferation and survival. Several pharmacutical companies are currently testing versions of this drug and it’s generating a lot of excitement. Gorman will continue to take his monthly doses of Temodar and will take the XK765 everyday. The down side is that, during the first three months, we will have to be in Birmingham a lot, and I do mean A LOT. Thereafter, we only have to go once a month. We decided we could “tough it up” and do whatever it takes. We have the option to drop at any time if we so choose. The good news is UAB was willing to work around our upcoming trip to visit our kids. We’ll go up sometime within the next two weeks for screening tests and get started after we return from our kids visit.

So here we go!!

Our New “Normal”

We had a great time in Seaside.  Just relaxed, walked around the little town and ate some good food.  Almost every day Gorman comments on how good he feels.  But a week from tomorrow, May 21, it’ll be time for this month’s five days of maintenance chemo, heavy duty stuff. 

In the meantime, we think of this as our new normal: six or seven days of feeling awful and then 21 days or so of feeling good, where we can fit in something fun.  Of course, there will be an MRI every 2-3 months and that is always hovering in the background, lurking in the shadows but I guess that’s where faith comes in.  We try not to get tangled up in those worry webs of the future and thank God for the present and know that He will be with us, whatever the future holds.

Speaking of fitting in some fun, we have booked our visit to our kids in Ft. Collins, CO and Santa Monica, CA.  We will fly out on Monday, June 2, which will give Gorman a good week to recover from the maintenance chemo.  I’m a little concerned about flying when his resistance is low.  Does anyone know if Airborne really works?  I can imagine what Gorman will say if I ask him to take another pill.

  We will see the oncologist this Tuesday and have blood work done.  Hopefully his white count will be up  at that point.  Also the next MRI is Monday, July 2 at UAB, where we’ll meet with Dr. Nabors again.

Gorman and I want to thank all of you who have left comments.  It lifts our spirits to read them.  As always, we continue to be grateful for your prayers.

 

Improving

Well, Sunday Gorman felt so bad that we didn’t even go to church. That five days of extra-strong chemo did him in. Combine that with the fact that my sister was coming for a visit Monday but we had to cancel because she was getting a cold, couldn’t risk that around Gorman and I was in a real blue funk for a couple days. It took lots of prayer ( —-and needlepoint), plus Gorman feeling better, for me to rally but he was feeling a little better on Monday and today he had a great day. So now we have about 20 days to fit in some fun before the next five-day round of chemotherapy. Tonight we going out to celebrate that good MRI(10 days later) and this afternoon we booked a little three-day getaway to Seaside, FL. We’ll leave Sunday after church.

I’m not very good at paragraphs, am I?

Not So Great Weekend

Gorman finished his last super heavy-duty dose of Temodar Friday night  but had been feeling awful since Wednesday.  The weekend was the pits.  He was fatigued, had nausea and generally felt awful.  By today, he was doing better.  Those of you who really know us will laugh at this.  I cooked supper tonight.  Gorman has been our chef extraordinaire for years now.  But I decided we needed something nutritious and before I knew it, he was in there with me, chopping and helping and snacking.  It was thrilling!  And he actually ate some supper.  I think we are on the way back up and hopefully, we’ll have good days for the next three weeks or so.  I keep reminding him, if the chemo is making him feel this bad, think what it’s doing to those random cancer cells!