Rory update

All,

Rory and the girls had a great time in Houston!

Today "reality" reared it's head as Rory and I met with the oncologist. Dr. McGregor has been out on maternity leave, and it sounds like today was her first day back? It also sounds like she's double-booking on purpose right now to meet up with her patients again, so we were glad she spent so much time with us. We were obviously the last appointment of the day, as the office was empty and lights were off by the time we left.

There have been a flurry of messages about appointments and tests and procedures, but it wasn't until today's in-person appointment that it's all starting to make sense. Maybe before I get to the end of the story I should start again from the beginning.

Several weeks ago (probably over a month by now) Rory started getting what she called "Charlie Horse" pain at the top of her leg. It would sort of hit her out of the blue, for no apparent reason, and would make it impossible to stand up or walk. Looking back, that's probably what started things in terms of getting her urologist involved in checking into possible kidney stone or other issues. She had an ultrasound which confirmed all her "rock garden" is still in there, but none of them seem to be moving or dangerous or an explanation for this muscle pain she was having.

So an x-ray was done the day after she got back home from SLC. My understanding is they still weren't worried about the kidneys, but something in the scans looked a little "off." Rory met with someone on the oncology team (not her regular Doctor) in late May, and has been meeting with others on her team as well. At that time they were thinking she had some sort of degenerative arthritis in her hip / pelvis, and got her a referral to a local specialist. That appointment was finally scheduled to happen next week, but it sounds like that might not happen. They also scheduled a PET scan which is a full-body image using special dye to allow the doctors to see locations where glucose is being metabolized. That scan was done on 2 June, just a few days before Rory and the girls were scheduled to leave for Houston. Her doctor was supposed to call back with results, but she was also scheduled to be in a medical conference over the weekend which probably explains why she did not call. We figured if there was something serious, she would have figured out a way or time to call.

Many of our body's functions and organs are expected to shine brightly during a PET (brain, tonsils, heart, etc). Most areas don't show up hardly at all. Cancer cells, which are furiously growing, show up because they are using sugars to fuel their replication. So finding "hot spots" where they shouldn't be, plus not having kidney stones as a likely culprit, plus her history of cancer, eventually all led to the team deciding this is probably cancer of some kind. The call finally came through to Rory just as they were landing in Houston; of course there was nothing to be done right then. I also got a call from the office, which I emailed about earlier.

So today we were finally all back in town; Rory, me, and Dr. McGregor. She pulled up the scan images to show us on the computer, and pointed out the things the team had been seeing. She explained that the next step will be a bone biopsy (including the marrow) on Friday, along with some calcium level and other blood tests. The procedure is supposed to be out-patient, but patients sometimes wind up with a little bit or even full anesthesia, so I'll be there with her. Our two neighbors who went through actual bone cancer both described the biopsy a very hard process, but per Dr. McGregor most patients don't have nearly so bad a reaction. Obviously we'll see for Rory. Interesting that they do the procedure using live CT imaging, so they can get the sample from exactly where they want, watching "real time" on a video feed. They should have results from the biopsy ready for our next in-office appointment scheduled for 22 June. 

Tuesday of next week Rory will also have a kidney MRI. During the PET there was slightly-elevated levels of activity in a kidney, so the doctors want a really good look at that area to try to rule out anything nefarious. Dr. McGregor said she really didn't think there was anything going on there, but just wants to make sure. Those results will also be ready for the in-office appointment the following day.

Signs are pointing to, and hopes are that this is still her breast cancer (seems odd to think she still has "breast cancer" after a double mastectomy) that is finding a new place to live. The biopsy will confirm that. It will also tell the doctors whether the cancer has lost it's estrogen receptor, meaning that her current medications are no longer effective against it and she'd start on something different. Or the biopsy might show that the cancer has changed into another type, perhaps the "triple negative" that others we know are currently fighting. Or, it could be her cancer has somehow found a way to keep the medication from inhibiting growth somehow, perhaps because of the location where it's taken hold. And of course, the biopsy could show it's something completely new and different.

Based on what is currently known, Dr. McGregor is expecting to find it's the breast cancer again, and that Rory will be on a new medication to start. She said people do best when they have multiple therapies, so chemotherapy was again discussed. Radiation is not being considered right now because as an adult, most of her bone marrow is created in the pelvic bone structure and irradiating would destroy a dangerous percentage of that precious material. Also Rory is in absolutely no pain right now, so this "bone abnormality" doesn't warrant using that therapy at this time. Since the growth is inside (not on the surface) of the bone, surgery is also not being discussed as an option. One part of the therapy will likely include medication to strengthen her bones, and another part will actually reduce the amount of calcium being generated ... silver lining for someone who makes way too many calcium phosphate kidney stones! Dr. McGregor also said that we should absolutely keep all our plans for December ... whatever therapies might still be going on at that time, they can and will schedule a 3-week "break" so we can all be at the reunion. :+)

Right now this information is being kept rather confidential, only going out to family and work supervisors. I'm going to collect all of this in a new blog (http://fightgoeson2016.blogspot.com/). When Rory is ready to share with more people, I'll share the link to that blog more freely. For now, only a few people are getting this information, which is probably best since we don't really have concrete answers or plans yet. I'll be happy to answer any questions that anyone has; please don't be too frustrated if most of my answers include the phrase, "We don't know yet."

So we're still "on hold" for another week until all these test results come back. More updates when I have them!