A few pics of my insides for your enjoyment...

Well, it’s been a while since my last update – almost 3 months. Since that time, I’ve had numerous Dr. visits, insurance company fights, scans, etc. Let me see if I can quickly get you all up to date.

Insurance: No news on the insurance front. I’ve got the VA insurance ombudsman in the loop, and he is doing an excellent job hounding on my insurance company. They have re-opened the case and are evaluating it again now.

Treatment (part A): I have a few subcutaneous (just under the skin) tumors that were growing and starting to irritate me. For your pleasure, I’m posting a picture of one of them now. You can see how the tumor grows through the abdominal wall and, as a result, is not amenable to being removed surgically. So…, I’ve begun treating it with radiation. We’ll see how this goes since pRCC doesn’t usually respond too well to radiation, but the radiologist is optimistic. I’m half-way done w/ treatments now (3 of 6).



Last week was a bit tough. I had a reoccurrence of ascites which was causing a lot of pain and nausea (including the first vomiting since my hospital stint). I spent quite a few days visiting Drs getting meds adjusted, etc. I went into the Hospital this past Monday to have the fluid tapped and --- good news --- over the weekend my body had absorbed the fluid and there was nothing to drain. I am feeling much better.

Treatment (part B): Last week I had a scan that showed some new tumors and some growth of the old ones. Here’s another picture of just some of the suspicious nodes (you can see 3 inside the circle). As a result, I’m looking to change drugs. You can be praying that I’ll make the right choice here; there are some new FDA-approved drugs that I haven’t tried yet; I can go back to some drugs that I tried earlier; or, I can find a trial of some even newer drugs. I’m researching it right now, and I’ll keep you posted.



Meanwhile, my spirits remain good, and I’m continually grateful for all your support. The word “thanks” doesn’t say enough. I love you all. -d

Update

Sorry it's been so long since the last update. Here's the latest.

Insurance: It looks like they will pay for Avastin but not Oxiliplatin. We’re still appealing this, but I’m starting to have some pretty severe neuropathy from the Oxiliplatin. It’s pretty difficult to type these days – I have to do the two-finger peck while looking at the keyboard (and I still make a mistake with every-other word). So, perhaps there was a blessing in disguise in the insurance decision, because it turns out that the neuropathy is due to nerve damage, and it can take months or even years to recover. I’ve stopped taking the drug and will be glad when some of the feeling in my hands/feet starts to return.

Tumors: Had a scan 2 weeks ago. More “slow growth” I’m gathering information for NIH/NCI, but have been so distracted by the insurance fight that I haven’t gotten it in the mail yet.

Colon: I had some bleeding that gave the Dr. some concern that perhaps things had spread to the colon and weren’t showing up on the scan, so last Friday I had a colonoscopy and it turned out that everything was completely cancer-free and the bleeding was due to some small internal hemorrhoids that weren’t even worth removing.

I want to thank everyone again for your prayers and love and support and the many generous offers to help in so many ways. It seems like there's an new blessing almost every day -- I can't tell you how blessed and thankful I am.

Insurance Update

Well, the news wasn't as good as I had hoped. The latest is that the insurance company is NOT approving new treatments using my current regimen. They've recommended a new regimen involving interferon, which is NOT appropriate for papillary Renal Cell Carcinoma according to every oncologist, report, and internet blog I read. Additionally, they denied coverage for prior treatments because it isn't the regimen that they recommend.

Secondly, the University of Virginia hospital is now saying "pay up or we turn it over to a collections agency." They aren't willing to wait for another insurance company appeal and they want me to pay "list price" which is about 160% of what the insurance company was paying (back when they paid for my treatment which, by the way, they say was their mistake and they never should have paid, but because they are so good-natured, they aren't going to come after me asking me to repay them... isn't that nice?).

Anyway, that's the news. I'm adjusting and still fighting. Although, I wonder, as I contemplate trying to come up with the nearly $100,000 for treatments so far, what right do I have to hold onto anything I've saved over the years? Do we really have any right to expect our treasures on earth to do anything but burn? Here's hoping for treasure in heaven and that, in the meantime, I don't get singed too badly.

2 Prayer Requests

Well, it's been a while since the last blog. Sorry for the delay. Until a few weeks ago it was due to the lack of news, and lately it's been due to laziness. Ummmmm.... laziness.... feels so good to just kick back and read when I should be writing on the blog...

Slow Growth
First, the news related to my most recent scan in early October. The scan showed no growth in the lung nodules (yeah!), but "slow" growth of the nodules in the abdomen -- especially a mass around the abdominal lymph nodes which increased by about 20% -- their definition of slow growth, although 20% over 2 months adds up. And this gets us to my first prayer request. I'm wondering how long I put up with "slow growth" and simply stay the course. My Dr. says this is great news and since I'm feeling so good (which I am), we should continue with the current therapy. However, part of me wonders if we shouldn't be trying something else. Problem being, the last time I went off drugs that were working, things went crazy (that's how I ended up w/ the tumors in the abdomen in the first place). I plan on calling NIH and seeing what the Drs there think.

Insurance Fight
In other news, I received a letter from my insurance company about 2 weeks ago which said that they were not going to pay for my primary therapy, Avastin. Not only that, but that the decision was retroactive back to early August. UVA Hospital found out about it when the insurance company refused to pay in August, but we didn't know what was up (frequently there is a long delay or initial denial of payment because of miss-codings on the bills, etc.). UVA appealed the decision in August and the appeal was denied, but still, we didn't know anything until receiving the letter. The end result is that, at the time we received the letter, we were about $50,000 to $60,000 in debt to UVA. I'm appealing the decision one more time (with some mroe supporting material); however, at this time I have no idea what will happen. When I told the insurance company that Avastin is what helped get me out of the hospital and that without it, there is a good chance of a return of the ascites and more visits to the hospital, they said it was irrelevant and that they needed scientific evidence that Avastin was good treatment for RCC.

In the mean time, I'm continuing treatment (on my own nickle) and plan on cashing in on my retirement account to pay for it if need be (I'm getting an infusion right now). To their credit, UVA is still treating me even though they haven't been paid for the Avastin treatments since August (they told us that they would hand it over to a collection agency if we didn't pay, but i'm not paying until the outcome of the appeal, and the insurance company says the appeal can take up to 60 days!). Anyway, I think the prayer request is obvious --- that the insurance company would change their mind and/or that I would find another treatment that is covered in some way that is as effective (or more so!).

Sorry the news isn't better. The good news is that (a) my Dr. is ready to fight... take it to the media, etc, and (b) I'm not discouraged. I had a dream that folks were ringing my doorbell and when I answered they tried to hand me a pile of cash. I turned it down saying, "not until I've exhausted my own resources." It was a great dream -- it reminded me that I can trust God to provide in unexpected ways. I'm hopeful. -d

UPDATE:
Just heard from the insurance company. They accepted the appeal and will pay for 12 cycles of treatment from this point forward. We're still negotiating payment for prior treatments, but I'm hopeful.

My Unusual Problem

Here's the first line of the latest radiology report (Aug 2 CT): "Mr. Ward is a 46-year-old gentleman with very unusual problem related to metastatic underlying papillary carcinoma." "Unusual" appears to be the key word. The report is full of subjective comments related to how suprised the Doctors are that my cancer is responding the way it is -- specifically, that after the near total-body shutdown, that I have recovered as I have and, especially, that the ascites (abdominal fluid) has not come back. All of this, of course, is good news, and the fact that the Dr's are baffeled is a testimony, I believe, of the power of your prayers. THANK you!!

The report also said that I was "a slightly plethoric, alert, pleasant gentleman, in no acute distress." (I had to look up 'plethoric'). But beyond that, the report shows that in the 6 weeks between scans, there has been no significant growth in any of my metestatic tumors. That makes this the best radiology report since my first round of Sutent when it appeared that the cancer was actually shrinking. Anyway, while this report isn't as exciting as actual shrinkage...

Shrinkage

It's great news. So, we stay the course w/ Chemo every other week and I'll probably get scanned again in a few months (no set date yet). Also, for those who ask, I haven't yet talked to NIH. They called while i was in Chicago on business (yes, my first "solo" trip since being in the hospital), and I wanted to wait until the next scan before calling them back. I hope to talk with them soon.

Sorry for the long inter-post delays; there just isn't that much news between scans. Thank you all again for your prayers and support. I'll keep you posted...

Lymph Nodes

Well, I was hoping to show you guys a picture of the adnopothy surrounding my porta hepatis, but - alas - I sent them on up to NIH.

I had been a bit worried about them since the last week's radiology report showed that they grew in size by 50% in the 4 weeks between my pre-Australia and post-Australia scans. However, I looked at them w/ my Dr. today, and they don't look so bad. Also, he explained that these are, basically, enlarged lymph nodes. It could be tumors that's enlarging them, bit it could also be swelling caused by the body's fight against the cancer elsewhere - there's no way to know. Either way, it's not good that they're getting bigger, but it's not as bad as it could be. So, the deal is that we're staying the course w/ Avastin and 5-FU/etc.

In other news, this past July 4th, I helped my other cancer-budy Andrea check off one of her bucket-list items (not that I want her to get through the list... maybe just most of the way through). Here's before (check out the look :):

During....
And after... We had a great ride. It was her first, ever, motorcyle ride and I know it helped that we were BOTH chock-full of opiate pain killers.

While we're at it. Mom and dad saw us on our open-air moterized vehicles and decied to ride their own down to the 4th-of-July picnic. It didn't seem like quite the same thing, but they seemed to be enjoying themselves.

We're back

Well, we're back from down under and had a great visit with the Montoya's. Here's picture from a rooftop restaurant in Sydney where we enjoyed our last 3 days.

The trip was great, and I felt stronger and stronger each day; my Drs are thrilled w/ how "healthy" I'm looking and feeling (I am too). The flight home was good as well. Getting into LA 6 hours before we left Australia was kind of weird, and then seeing the sun set a second time on the LA - DC flight was weird as well. We all adjusted quite quickly to the new time (I think the time change was so different and the trip home so long, that the body doesn't really know what to do, so current time is good enough.)

I'm writing this blog from UVA where I'm "catching up" on my chemo. Some tentative good news (remember the last good news) is that I had a scan this AM and it seems like all the tumors have remain unchanged in size. The exception, once again, is that the oncologist really couldn't find the 2 tumors in the abdomen, so we need to wait for the radiology report on those; however, this time I'm reasonably hopeful that the report will show no change. Of course, shrinkage would be the best news; but I'm very happy and thankful w/ "stable."

As always, thanks for your prayers; I KNOW that they make a difference.