The good news is that we heard from Dr Sosman this week. After reviewing the scans, his assessment is that at best case, there was small reduction in the size of the lesions (tumors), and at worst case, they are stable. Sounded good to us, but his opinion is that the reduction was not significant enough to "justify putting Bobby through IL2 treatment again." While Bobby was certainly not looking forward to IL2 again, it's a bit disappointing that what we thought was evidence that the IL2 was successful turns out to be not as successful as it needed to be. It's like Michael winning his heat but not being as fast as the runners in the other heats, so he doesn't take home a medal.
So, the plan is to have another CT Scan in two weeks (Feb 25), evaluate and go from there. We did schedule an appointment with Dr Keller on Mar 1, so hopefully the process of coordinating with Nashville will go more smoothly this time.
We're not even going to speculate about possible outcomes because it seems like whenever we think we can narrow it down to 2 or 3 options, it turns out to be something completely different. It makes long term (like next month) planning a little challenging, but it reminds me of James 4 where it says "Come now, you who say, 'Today or tomorrow, we shall go to such and such a city, and spend a year there and engage in business and make a profit.' Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. Instead, you ought to say, 'If the Lord wills, we shall live and also do this or that.'"
If the Lord wills, the scans will show continued stability or even reduction in the tumors and we'll trust that a plan will unfold at the right time. In the meantime, Bobby's feeling great which is a huge blessing, and he's being really productive tackling the medical billing issues. He's also discovered the scanner and has become a scanning fool, preserving hundreds of photos into digital format. And on top of that, he can grill a mean tuna steak or smoked salmon, and put it together with pasta and grilled veggies. Yum, yum.
Thanks for hanging in there with us, your encouragement and prayers are keeping us going. Love, Juli
Beyond Ridiculous
After my last post on Wednesday, we got a call that the CT Scans were at the hospital and were being delivered to Dr. Sosman, and we should expect to hear something by Friday. Well we did hear from Kay (we're no longer sure who's filling in for who), and she said that Dr Sosman has the scans, but has gone out of town until Tuesday. Does anyone else think this is beyond ridiculous? We called Dr Keller's office from the road (we went to Enid yesterday to see Michael run in a track meet), left a message with Katherine, who promptly returned the call (see, it is possible!). We told her our saga, and she promised us that Dr Keller would personally call Dr Sosman on Tuesday. So we wait.
As Bobby and I have talked about this, one thing we realized is that as well meaning and hard working as the medical community is, they have to compartmentalize each case. They are only thinking about us in blocks of time, like when we walk in the door for an office visit until we walk out. How else could they function if they operated like I do much of the time, trying to juggle too many projects at once? But because they aren't thinking about us, it's up to us to never assume something is happening unless we know for sure it is. We all hate to be pests, but you have to get pretty close to that point in order to manage the system. If we have trouble with this, after over 20 years of up close and personal with the health care industry, I can only imagine that it would be challenging for others.
As several dear friends have reminded me over the past month, God is in control of the timing of the schedule, and if we have to wait, it's for a purpose. So maybe one purpose is to encourage others to be assertive about your health care, be your own best advocate, and don't make assumptions. And keep good records. Maybe some day I'll share the trials of medical billing, but you probably really don't want me to get started. I'll just say that since Bobby's home now, he's taking on that task and dove in head first this week. He only tried to jump through the phone line and strangle someone once, and I must say he showed a great deal of grace and restraint.
Sorry to ramble, just sharing a glimpse of life at the Armours this week. Oh, and by the way, Michael came in first in his heat, running the 800m race. It was exciting!
Love, Juli
As Bobby and I have talked about this, one thing we realized is that as well meaning and hard working as the medical community is, they have to compartmentalize each case. They are only thinking about us in blocks of time, like when we walk in the door for an office visit until we walk out. How else could they function if they operated like I do much of the time, trying to juggle too many projects at once? But because they aren't thinking about us, it's up to us to never assume something is happening unless we know for sure it is. We all hate to be pests, but you have to get pretty close to that point in order to manage the system. If we have trouble with this, after over 20 years of up close and personal with the health care industry, I can only imagine that it would be challenging for others.
As several dear friends have reminded me over the past month, God is in control of the timing of the schedule, and if we have to wait, it's for a purpose. So maybe one purpose is to encourage others to be assertive about your health care, be your own best advocate, and don't make assumptions. And keep good records. Maybe some day I'll share the trials of medical billing, but you probably really don't want me to get started. I'll just say that since Bobby's home now, he's taking on that task and dove in head first this week. He only tried to jump through the phone line and strangle someone once, and I must say he showed a great deal of grace and restraint.
Sorry to ramble, just sharing a glimpse of life at the Armours this week. Oh, and by the way, Michael came in first in his heat, running the 800m race. It was exciting!
Love, Juli
View From the Bottom of the Crack
Best we can tell, we've fallen through a crack somewhere between Tulsa and Nashville, perhaps on someone's desk at the bottom of a stack of papers, or maybe sitting in a fax machine somewhere or in "Medical Records" which sounds like a basement somewhere.
For those inclined to gory details:
Mon, Jan 6: CT Scan at Cancer Care Associates (CCA) in Tulsa
Thurs, Jan 8: Called CCA Nurse, Katherine, left a message.
Fri, Jan 9: Katherine called, report not written yet, but Dr Keller says scans look stable. Good news.
Mon, Jan 12: Report is ready, will be faxed to Vandy. We picked up the report at CCA, since our fax won't work with the new U-Verse internet service (a whole other frustration). Report says tumors have decreased in size. We do the Happy Dance. Called Barbara at Vandy, told her to expect the fax.
Wed, Jan 14: No word from Vandy yet. We call and leave a msg with Barbara.
Thurs, Jan 15: Barbara calls. She hasn't seen the fax. We fax it to her ourselves, and confirmed that she got it. Dr Sosman out of town until Monday.
Tues, Jan 20: Called and talked to Mary, who's filling in for Barbara at Vandy. She says, "the report is on Dr. Sosman's desk."
Thurs, Jan 22: Called and talked to Barbara. She said she's sure he saw the report. She'll look into it.
Mon, Jan 26: Called, left a msg.
Tues, Jan 27: Barbara called. Dr Sosman needs to see the actual CT films. We gave her the CCA phone number. She promised to call us back by Thursday.
Wed, Jan 28: Called CCA to make sure Barbara had talked to them. Kim said she got the message, would FedEx the scans today.
Friday, Jan 30: Called Dr Sosman's office. Barbara's off, talked to Kay. They haven't received the scans yet. Called Kim, left a message.
Monday, Feb 2: Called Kim again. She hadn't sent the films yet because she "couldn't hear the phone message well enough to decipher the address" (the message from 5 days ago). We give her the address and she assures us she will FedEx today.
Tuesday, Feb 3: We check the FedEx tracking number and see that the package was delivered and signed for at 10:15am.
Wednesday, Feb 4: Call from Adrienne at Vandy. She's filling in for Barbara, or for Kay who was filling in for Barbara, we're not sure. Anyway, she says "Dr Sosman has the report. I know it's hard waiting, so I'll go ahead and let you know 'everything's stable'." Even though we've had this bit of information for a month already, we say "thanks, but does he have the CT films?" She replies, "Oh, I don't think so, I'll have to check with Medical Records."
Arrrrggggggh!!!
For those inclined to gory details:
Mon, Jan 6: CT Scan at Cancer Care Associates (CCA) in Tulsa
Thurs, Jan 8: Called CCA Nurse, Katherine, left a message.
Fri, Jan 9: Katherine called, report not written yet, but Dr Keller says scans look stable. Good news.
Mon, Jan 12: Report is ready, will be faxed to Vandy. We picked up the report at CCA, since our fax won't work with the new U-Verse internet service (a whole other frustration). Report says tumors have decreased in size. We do the Happy Dance. Called Barbara at Vandy, told her to expect the fax.
Wed, Jan 14: No word from Vandy yet. We call and leave a msg with Barbara.
Thurs, Jan 15: Barbara calls. She hasn't seen the fax. We fax it to her ourselves, and confirmed that she got it. Dr Sosman out of town until Monday.
Tues, Jan 20: Called and talked to Mary, who's filling in for Barbara at Vandy. She says, "the report is on Dr. Sosman's desk."
Thurs, Jan 22: Called and talked to Barbara. She said she's sure he saw the report. She'll look into it.
Mon, Jan 26: Called, left a msg.
Tues, Jan 27: Barbara called. Dr Sosman needs to see the actual CT films. We gave her the CCA phone number. She promised to call us back by Thursday.
Wed, Jan 28: Called CCA to make sure Barbara had talked to them. Kim said she got the message, would FedEx the scans today.
Friday, Jan 30: Called Dr Sosman's office. Barbara's off, talked to Kay. They haven't received the scans yet. Called Kim, left a message.
Monday, Feb 2: Called Kim again. She hadn't sent the films yet because she "couldn't hear the phone message well enough to decipher the address" (the message from 5 days ago). We give her the address and she assures us she will FedEx today.
Tuesday, Feb 3: We check the FedEx tracking number and see that the package was delivered and signed for at 10:15am.
Wednesday, Feb 4: Call from Adrienne at Vandy. She's filling in for Barbara, or for Kay who was filling in for Barbara, we're not sure. Anyway, she says "Dr Sosman has the report. I know it's hard waiting, so I'll go ahead and let you know 'everything's stable'." Even though we've had this bit of information for a month already, we say "thanks, but does he have the CT films?" She replies, "Oh, I don't think so, I'll have to check with Medical Records."
Arrrrggggggh!!!
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