Another Overdue Update

We spent most of May and June in recovery mode after the setback of The Allergy Incident. It was quite frustrating at times (for both of us) for Bobby to feel like he was running on empty most days.  He pushed himself as much as possible, but by mid-afternoon most days, he was out of gas.  There were also several "out of left field" complications that seemed to be little more than salt in the wound - high blood pressures, reflux and heartburn, and tendonitis in his right forearm. And just to keep it ridiculous, one of the screening tests from the hospital stay indicated his gallbladder was functioning at just 3%! We followed up with visits to our surgeon, and determined that since of all the complications he was experiences none were likely caused by the gallbladder, there was no immediate need for surgery. Good news, but still a head scratcher!

Finally, after the better part of two months, it feels like we've turned a corner.  The Taylor Family Reunion was over the Fourth of July weekend, and our brother-in-law Chris went on 3 bike rides with Bobby, and really seemed to kick start his energy level. We enjoyed having 21 family members together for time at the lake.

Of course, Bobby's renewed energy may be due to the fact we've been off any treatment since June 7th, which brings me to the bad news.  At our checkup on the 14th, we learned that the tumors are progressing once again.  Enough to bump us off the clinical trial, but because of the previous regression, he's actually back to where we started in December.  So, if nothing else, the VEGF Trap gave us six months of stability, which is always a good thing.

As for the next step, we're planning to switch to another Targeted Therapy called Votrient. Dr Keller recommended taking a "treatment break" for a couple of months to give Bobby time to rebuild his strength. It's perfect timing, since we have a week in Colorado planned for next week. We are going to see Michael, who's up there working as a trail guide at Sky Ranch in Lake City. We are really looking forward to trading the 100+ degree heat of Oklahoma for the 60s & 70s in the mountains!

Juli

Home and Some GOOD NEWS

Just when Bobby was having about as much fun as he could handle, he got released from the hospital late Friday.  We had consulted with specialists, and had tests which had not produced any new clues.  The rash had mostly subsided, and we got to the point of thinking that sleeping in his own bed and resting at home was going to be the best medicine, especially since all the meds he was on could be given orally.  Of course, it is better being home, but Bobby is still feeling pretty rough, really wiped out. He compares it to the recuperation after IL-2, which was quite exhausting. Trip and Michael came home for the weekend, and have been a huge help with some gardening and household projects. 

We are scheduled to see Dr Keller on Tuesday for his scheduled chemo. Jury's still out on whether that treatment will happen.  His blood pressure is still running high (they changed all his BP meds over the past week), and that may be a show stopper.  Also, I'm not sure if he can tolerate the fatigue that normally comes with his chemo dose.  We'll see.

Now to the GOOD NEWS. The clinical trial nurse came by Friday morning to check on Bobby and after discussing the current situation, she mentioned that the results of the CT Scan (which had been previously scheduled this week to measure his progress on the trial) were already in.  Naturally, we quizzed her about the results and she hedged saying, "well, it's hard for me to say, you'll have to talk to Dr Keller," which sounded like code for "the doctor gets to deliver bad news, not me."  So I flippantly asked her to tell Dr Keller that good news had been in short supply lately, so if it so happened that it was a good report, we'd love to hear it sooner rather than later.  I had honestly forgot that I'd said that when Dr Keller popped in the room a couple of hours later, waving some papers and declaring, "it's looking good!"  All the nodules we are tracking (3 in the lungs, 1 in the adrenal) had shrunk.  Total regression was 24%!! We'll take it.  This means the larger dose of the VEGF Trap has been effective, whereas the smaller dose, which resulted in a 20% growth, was not.  So things are definitely moving in the right direction in that regard!  Talk about a nice dose of encouragement, after a very discouraging week!

Thanks again for checking on us.  Love, Juli

The Snowball Effect

We were moved to a regular room yesterday from the ICU unit.  It felt like a step in the right direction, getting us closer to getting home. Plus, Bobby was finally able to take a shower after four days - that certainly helped him feel human again! He had the CT Scan which had previously been scheduled as part of his chemo treatment plan. And today, he's getting a gallbladder scan - the ultrasound from a Tuesday showed some "sludge" in the gallbladder, so they're checking that out.  Of course, that would open up a whole other issue which would be unrelated to either cancer, chemo or the current "skin condition of unknown origin." He's not sleeping well, and has little to no appetite.  It's beginning to feel like the snowball is heading down the hill.  I'd like to stop it in it's tracks, and just get home and back to "normal," whatever that is.

While it's easy to get discouraged, as I consider the devastation in Tuscaloosa, where our niece, her husband and two young children live, my perspective gets readjusted.  They are ok (they sought shelter with a friend who has a basement), but they haven't been able to get to their home due to roads being out. My heart breaks for all those whose lives have been irreversibly altered in just a moment. May we all be assured that our loving God is still in control, still on the throne, despite what our eyes see.

"As for man, his days are like grass; as a flower of the field, so he flourishes. When the wind has passed over it, it is no more; and its place acknowledges it no longer. But the lovingkindness of the Lord is from everlasting to everlasting on those who fear Him...The Lord has established His throne in the heavens; and His sovereignty rules over all."  Psalm 103:15-17, 19

Meet Erythema Multiforme Major

I thought about posting pictures of Bobby's chest and and back, but they aren't for the squeamish of stomach. Suffice it to say, he looks worse than the photos I saw when I googled "erythema multiforme," which is just a more challenging way to say a "skin condition of unknown cause." At least we have a name, but not any closer to knowing the cause.  The rash is getting better, at least on the outside, but Bobby's still feeling pretty bad. Hasn't been able to eat or drink much at all, and itching, despite being on antihistimines and steroids.  They added an antibiotic and antiviral for good measure.  He's had a chest xray, abdominal ultrasound, and EKG.  We are still in ICU, but are expecting to move to a regular room today. Hopefully home by the end of the week.

Before this unexpected turn of events, he was scheduled for a catscan on Friday, and results next Tuesday to determine the next step for his chemo treatment.  Everything's up in the air right now.

To add to the frustration, the internet was down at the hospital, and our service is down at home as well, from a power surge during the storm on Sunday.  I'm not sure which neighbor has the unsecured linksys internet connection, but I'm thankful to be borrowing it right now.

Thanks for your continued prayers. 

Juli

Welp, this was unexpected.

It was a really nice Easter Sunday.  Despite the rain, we enjoyed morning worship, then had my parents, Lynne & her family, Trip & Michael all over for Easter dinner - an almost full table of twelve. 

Then about 9:30 Bobby said he had a headache and noticed a couple of raised spots in his left armpit. Took a couple of tylenol and went to bed. About 11, he started throwing up, and by 2am, the spots had become large welts, followed by about a dozen more welts on his chest and back. By 8, he was covered, and had been throwing up every 30 minutes. We headed to the ER. They started him on Zofran for nausea, steroids and benedryl for the rash. Things move slow in the ER, we finally saw the doc about 3pm and he admitted him to the ICU as a precaution against respiratory complications. He's been on more of the same meds all night, including breathing treatments every four hours. This morning, he's a little better. The welts have become huge, but have flattening out. He's itching like crazy, especially on the palms of his hands.

The cause is still a mystery.  The current contenders are:

1. The VEGF Trap chemo. Unlikely since he's been on it for 4 months, but since it's a clinical trial it has to be reported and considered.

2. Keflex, the antibiotic he was on last week for a sinus infection. Dr Keller thinks the steroid shot
he got at the same time he started the Keflex was masking an allergic reaction. Once the steroid wore off, the reaction started.  Dr Motazadi, the internist, is more skeptical.

3. Insect bite.  Bobby did some yard work Saturday afternoon, maybe he got bit or exposed to something in the backyard.  Seems like the reaction would have been earlier if this was the case.

4. Obscure cause. They are running some tests and consulting with an infectious disease specialist to investigate other out-of-the-ordinary causes.  Calling Dr House...

5. Something he ate.  It better not be my cooking, just saying.

Looks like we'll be in the hospital today, and most likely for another night.