The Good, The Bad, and the Ugly

The good is that Meagan is feeling relatively good these days. So good that she has a hard time believing that she really has this horrible disease. Unlike many other cancers, she has not had to endure lengthy, debilitating treatments. Her "events" have been off the meter bad, but did not leave her feeling badly for any significant period of time. Her surgeries have been relatively minor, with localized pain, but requiring no more than ibuprofen. So after 15 months with living with the disease, a disease that can be very debilitating and require super hard treatments, she has not had that bad a quality of life. We hope that continues for some period of time. But I can sense the frustration and disconnect within her. She feels capable of walking, of being productive, even though she has some limitations cognitively and physically (no driving). So it's a bit like being in the eye of a hurricane - some events have passed by with severe consequences, there is this temporary respite (even the chemo she is on seems to have little side effects, not even much fatigue), but I at least know we have the rest of the hurricane to come.

The bad is the difficulty Meagan is having getting into her studio. She moved her studio physically from what is now Casey's bedroom to my old office. But there are lots of boxes of her art supplies and even though she has a space to write and reflect, with a great view of the garden, she wants to get the whole thing set up. Than means going through the boxes (all of which are labeled with their contents) and deciding what to put up, what to hold, and what to get rid of. Some of the "hold" stuff are things she cares a lot about but probably have meaning long term only for her. So it's hard emotionally for her to deal with it. She knows she won't be able to paint or continue her Illumination project, and while sad, has reconciled herself to it and has set what work she has completed aside, to be held and passed down as a family heirloom, after we figure out how to display it properly. But her scrapbooks of old magazine pages, her books on fashion, and textiles and patterns, her collection of beads and fabrics - all of those are things which helped her creative development and which are too hard to pass along. I've encouraged her not to do anything rash, to get rid of logical stuff (i.e., oil paints), but just leave the rest so she can use her space. I think after a burst of activity yesterday and today she will do that - after a weekend at Decatur this coming Sat and Sun, she wants to be able to start using the space Monday, and that will help bracket how much more time she spends on on this emotional process.

The ugly is having to talk about where we are in terms of disease progression and options. Because she forgets, we have to have the same conversation repeatedly (although not frequently). This is a challenge for me and for her. It's frustrating for me, because I get re-traumatized again, and it's frustrating for her as I remind her of what the treatment options are and what clinical trials have been shut down to us (because of her brain tumors, brain bleeding, seizure history, and medication). She has a hard time grasping all this (it's complicated) and so can get a bit testy. She knows it's a matter of life and death, but doesn't quite grasp that our treatment options have been severely limited and her clinical trial options almost completely eliminated. Plus there is the concern by Kaplan that any clinical trial involving Interleukin 2 (which most use in combination with chemotherapy [hard in and of itself] and tumor infiltrating lymphocytes) would be extremely toxic and involve taking her off her medications - so that is a conversation we need to have with him on August 3. Let alone we have to await the results of the brain scan on August 1, because any brain involvement at all makes clinical trials and any systemic treatment moot altogether. I still need to follow-up with one clinical trial place (locally) to find out if they would take her on, if there is no brain involvement. It pisses me off that they have not gotten back to me after a couple long conversations with the clinical trial coordinator several weeks ago who promised to get back to me. I take this as a sign that it is "no" (because most clinical trials are actively trying to recruit patients, so if they don't call you back it seems self evident they don't want you), but Meagan wants a definitive "no". So a little stress.

Then there is the whole issue of appeals and request for compassionate use exceptions with the clinical trial places. Assuming Meagan wanted to, and Kaplan either agreed or didn't stand in the way (and her brain is clear for the time being), does she take the risk (if the clinical trial places agreed) of going off medication and undergoing experimental treatment which might be quite debilitating and trigger strokes or seizures? Especially if the treatments are out of the area. And have quite uncertain outcomes (these are all quite experimental and theoretical) and may not do anything in terms of life extension, but could dramatically affect quality of life?

Difficult, difficult decisions - all in scenario stage because we don't have all the information. The big pieces I suppose are the state of her brain on August 3 and what we think of what Kaplan has to say about going off medications and the potential impact of high or low dose Interleukin on her  - coupled with a discussion of quality of life and probability of success. Ugly...

Of course I'm worried...

true, the brain MRI was only for the National Cancer Institute assessment we have on Thursday. It's part of their protocol because they want you scanned from head to toe. And some of their clinical trials exclude you if you have a brain tumor. Meagan had one brain MRI early on, and Kaplan told her, "your smarts are all there", and no evidence of tumors then. But that was then and this is now. We know the cancer has spread throughout her body. I know that melanoma likes to go to the brain after the lungs. So while there are no symptomatic reasons to be concerned, it is a scan, there is a possibility there is something there, and the repercussions would be epic.  I hate this job.

I mean, I wouldn't want anyone else to do it. But the uncertainty and having to be ready is really hard. I know there are effective treatments for brain tumors (gamma knife surgery, which is targeted radiation). But it would still be very challenging news and cabana boy would be working double overtime to handle the fall-out. At least we will be hearing the news from our oncologist. And we are headed to Bethesda for the best treatment possible, irrespective of where her melanoma is landing.

Latest news on impact of government shutdown

"As far as the shutdown: Things are changing hourly. The last we heard was that the Clinics will be closed and we will not see new patients during the shutdown. We will likely start seeing patient immediately once the government reopens. If you would like to delay your visit until we get word that the government is reopening we can accommodate that. Please be aware that there will be no one in the office during the shutdown and we are legally prohibited from checking our work emails during the shutdown. We are expecting to have a meeting with Dr. Rosenberg later today to get more information about how we will be affected and I will pass on any information that I can."

A Plan, subject to...

All the logistics are set for us to go to Bethesda next week. Got the package from the National Cancer Institute (NCI). Pathology slides Fed Ex'd yesterday, genetic blood tests faxed yesterday, brain MRI scheduled for tomorrow, and Monday we visit our oncologist (to review the results of the brain MRI) and pick up the CDs of all the CT, PET and MRI scans and linked reports to hand carry to her appointment. Check, check and double check. What could possibly go wrong?

Alright, a plan...

We are now scheduled to head back to Bethesda and the National Cancer Institute (NCI) located within the National Institute of Health complex next week.  Our appointment is Thursday morning at 8:30am until they are done, so we fly out Wednesday and back on Friday. We've got a lot on our plate here with Meagan's dad's health issues so no time to relax and make the trip fun. The NCI process is pretty interesting. Read on if you want the details.

Interpreting Scan Results

There is nothing weirder than seeing your wife's body rendered in transparent, skeletonized 3D and the oncologist using the mouse pad to turn it around so you can see it from different angles.  Weirder still is seeing these little bright dots which represent tumors (boy, those tumors like sugar).

I Believe We Have a Game Plan

This ordeal has more plot twists than an Agatha Christie mystery. We have been mentally prepping for an in-hospital treatment of Interleukin-2 at the start of next month, under the supposition that the next scans (scheduled for the 29th of this month) will show small (hopefully) disease progression. We'd like to believe the anti-hormone treatment she's been on would have some chance of success, but we know it's small, so we are being somewhat realistic about what comes next. We suspected Kaplan would recommend the Interleukin 2 treatment as it is the last FDA approved treatment available, before pursuing clinical trials.

It's a Long and Winding Road

that leads me to grey hair....

The twists and turns continue. Honestly it seems like just when you've mentally got yourself in order to handle the projected path, something comes and and bam! it all changes.

Drama Fatigue

There is something enormously fascinating about the human (well, let's say male) brain. Given the enormous stress we've been under the last several days since the latest news, it's no wonder mine's a bit addled. The typical male response to stress is fight or flight. Clearly a cabana boy cannot do either of those things in this kind of situation.

Reflections, Infections and Inflections

Cancer isn't an infection the way a virus is, although it feels the same. For so many ills and diseases the protocol for cure is well known, even though it can be a hard road. I remain impressed by the women we see each day at the cancer center, getting their blood draws, doctor visits, and then chemotherapy or radiation treatments. Their spirit and determination is admirable. I suspect part of what keeps them going is that they have a pretty good idea that the probability of success is quite high. Yes, they may have to live for 5 years not knowing if the cancer will reoccur. But given the treatments and the continuing medications (Tamoxifen) if you were in Vegas you'd bet on their success at becoming disease free.

Cabana Boy on Double Duty

I wasn't sure when I started this what I'd write about. I did know that I didn't intend it to be a blow by blow account or daily version of the journey. I guess I hoped it would be more reflective. But this morning, when the snow is fresh on the ground and we are just off our most recent scan news, it seems somewhat appropriate to break pattern and give a "live" update. If you want that, read on .