The results are in

And they are good. We met with Dr. Lange on Thursday during my Erbitux treatment and while I wasn’t as alert as I would have liked thanks to the benadryl, decadron, and kytril I do know that he said the CT scan results were “unremarkable”. In layman’s terms that means good – no visible sign of cancer or tumors. This is good news – and we are on our way to a milestone. This scan was 15 months since my last surgery – my next scan will be in 3 months and will mark 18 months since my last surgery. During my 6 year battle, I’ve never gone more than 18 months without a recurrence so we’ve got a lot riding on the next 3 months and they look to be busy months for me. (More on that later).

Our appointment with Dr. Lange was good – after delivering the CT results and filling me in on my latest blood work - all levels are within normal or acceptable range, we both remarked that it appears the Erbitux is doing something. We still aren’t doing a happy dance, but I think we are beginning to choreograph one for our next sit down in April. What this also meant was that my taking a few breaks from treatment to travel and catch my breath did not seem to have an impact on the effectiveness of the Erbitux. Also good news and something I will remind him of when I want another few weeks off from treatment.

He was surprised to see that my face is clear, no visible signs of the rash. I said that’s because : 1)the rash I do have is in my scalp and you can’t see that, but it’s there and it’s annoying; and 2)I have other side effects instead – mouth sores and a lovely ingrown toenail. We both got a chuckle out of this. I manage to get all the side effects that are at the bottom of the possibilities list. We both silently acknowledged that I am anything but typical – special is how we would phrase it. I’m having the toe looked at next week and there isn’t much to do about the other side effects so I just hang in there and deal. It’s just important for them to know that these side effects are present.

Now on to the not so great new – an update on the kidney front.

I spoke with Dr. Karian this past week and we began to make a plan. First we discussed the current stint. It’s not doing what it’s supposed to, it’s causing me pain and discomfort (and a potential arrest in Arizona last month…), and most importantly is affecting my quality of life. Once he understood all of these issues he agreed to remove it in the next week or so. He will be reviewing my latest CT scan to see what it tells him about the adhesions and scar tissue that appear to be root of all my trouble. Because of the size of the stint the best place for removal will be the operating room which means a day surgery and anesthesia. It also means he will be able to inject a dye to see exactly where the constriction is, do balloon dilation and get another view of what’s going on inside the urether. Once it’s out he will not insert another one. Instead we’ll wait about 2 weeks, do an ultra sound and see if the urether has constricted and the kidney has backed up. Both of us are fairly certain this will happen. Now the bad news.

This means I need to have another surgery in the near future. It won’t be anything like what I’ve been through so far only a few hours in the OR and hopefully less than a week in Mt. Auburn. There are several options we are weighing and hence the reason Pat and I have been anti-social lately as once again we are in research and decision mode. When I had my major surgery in November 2004 one of the reasons I chose not to go to the specialist in Omaha and stayed with my team at Mt. Auburn was because Dr. Karian said he would save my bladder, and he did. We knew that chances were I would have other problems down the road and we all hoped it would be further down, but the time is here now. Fortunately of the 3 options I have, it was pretty easy to choose and I am able to go with a less drastic procedure.

The problem is that scar tissue and adhesions from previous surgeries has constricted the urether from my right kidney and is causing the blockage. To simply remove the scar tissue is not an option for several reasons. Artificial urether do not exist because they cause kidney stones. There are options to re-build urethers using excess bladder (I don’t have any excess) or excess ileum (I may have some, but I am not involving this part of my intestines in a surgery when I finally got my diarrhea to a manageable 5-6 times a day). This leaves us with 3 more invasive options. Fortunately Dr. Karian has operated on me twice and has discussed this with my main surgeon Dr. Nauta, so I’ve got the best doctors on my team and more importantly on my side.

The first option we ruled out because it involved my left kidney and urether, both of which are currently free from scar tissue and we’d prefer to keep it that way.
The second option is to remove the damaged part of the urether, reconnect it to the bladder and kidney and shift the right kidney down, into the abdominal cavity. This is potentially an area where my cancer could and has recurred, but since all is clean there right now it seems like our best bet. If the cancer does recur there at least I will have gotten another 6 months or 6 years out of the kidney. Not a bad deal considering…
Option 3 is to remove the right urether and kidney completely. Though this will eliminate all problems like the ones I’ve been dealing with for the past four months, it will create a whole new set of issues. Dr. Lange admitted we’d have to adjust the Erbitux dosage and possibly consider stopping treatment all together. Hopefully option 2 will work and we won’t even have to consider option 3.

Now there is still a lot to be done/discussed and planned before this surgery. I have no tentative dates in mind yet – and it could be avoided if the balloon dilation and current stint have managed to loosen up the constriction enough for me to function without pain and infection. So keep me in your prayers and hope for the best, though I can’t tell you exactly what that means. I’ll keep you informed of our decisions and important dates should there be any.

Hopefully the above will give you a picture of why the past few weeks have been really rough on Pat and I and why we’ve sort of crawled under a rock lately. When we need to focus on decisions like this we like to do as much research as we can before saying anything to our friends and family. We know the questions we need to ask and the worst case scenarios we need to review. It’s really a never-ending process for us and there are periods, like now when it is overwhelming and I just need a few days of good cries, “why me’s” and lots of junk food. We are trying to see the bright side of all of this, but right now we’re taking it day by day – some good, most not so good – every little thing that goes wrong (did I mention that our car wouldn’t start on the day I needed to get to the hospital for my CT scan and there wasn’t a cab to be found in Somerville…) feels like someone stepping on my ingrown toenail. I realize no one is out to get me, but there are days when it certainly feels that way.

I know there are many of you who read my posts and don’t leave comments and that is fine with me – I do the same on several PMP blogs that I read. I’ve never put a counter up on the site because frankly I’m not doing this for numbers. I just want to say thank you to all of you for the prayers and support and caring words – I feel them and I turn to them when I’m having a bad day. Your friendships mean a lot to me (and Pat) even if we don’t necessarily see as many of you as we’d like.

And that’s all for now. It’s 2AM – despite numerous sleeping aids I’m wide awake thanks to todays, or I guess now its yesterday’s treatment. Hopefully typing up this entry was the therapy I needed to clear my mind and get some sleep.

Posted by jean at January 27, 2006 02:10 AM