Yesterday we got a call from Dr. Connolly’s office to schedule Ana for the radiation mapping process. We were surprised since we thought the next step was to speak with Dr. Yamashiro about all those supposed options she had including the new minimally invasive surgical procedure which he seemed so optimistic about on Thursday (I’ll get to that in a minute).
We scheduled the mapping procedure for this Friday (it involves getting those three tiny tattoos placed, a CT scan and a foam mold made of her body – all in preparation for the Great Zapping of 2015). I figured we’d touch base with Dr. Yamashiro after we made the appointment (well, Jim pushed to make the appointment even though I was like…HEY, WE HAVEN’T HEARD FROM DR. Y YET!)
I shot an email off to Dr. Yamashiro letting him know the appointment was made, and also alerting him to a new symptom that’s been bugging Ana. Well, it’s not exactly new – she’s been complaining of it for a couple of weeks but I thought it was normal muscle pain. Her lower back hurts her every time she lays down and she says it takes a few minutes before the pain goes away. Now, this can happen to me too…but I’m OLD and I know it’s from being out of shape. She’s young and springy, so it seems unusual that the pain is so persistent. My fear was that there was a tumor in her back (yes, my mind goes there with every ache and pain), so in my email I asked him to look at her latest scans to see if he could find anything, since the scans go from her neck to her pelvis. Luckily he got back to me immediately and said that her spine is clear of tumors, but he does believe the pain is due to the Votrient.
And further worrisome news, her latest labs show elevated BUN and Creatinine. This happens when the kidneys aren”t quite working right – and this plus the lower back pain is kind of alarming (from my perspective). Also possibly from Dr. Y’s perspective because he reduced her Votrient dose again. This is kind of a bummer as we’d hoped the higher dose would further stop her tumor progression, but it looks like it’s getting hard for her body to tolerate it.
Dr. Yamashiro also said that lung surgery was not an option (in his email response to me), and that’s because in order to remove the largest lung tumor, Dr. Middlesworth would have to take the entire upper lobe of her left lung. So we went from minimally invasive (miraculous) tumor removal to taking half the kid’s lung in the span of three days. At this point, I emailed Dr. Middlesworth because as much as I love Dr. Yamashiro, he’s not a surgeon, and I really needed some clarification. I wanted to know exactly how much lung tissue is removed when you get half a lung removed (not that I want to go for this option, but it seems relevant in case this comes up again if the radiation isn’t successful). Dr. Middlesworth immediately emailed me back with his cell phone number, and I got on an impromptu call with him.
Dr. Middlesworth doesnt’ pull any punches. I suspect that Dr. Yamashiro is very careful with the information he gives and is actually better with his game face than I originally thought. He’s also (again), not a surgeon. Dr. Middlesworth explained that a 3 cm tumor in the lung is quite large. Even if you remove it without taking the entire lobe of the lung, that lobe becomes completely dysfunctional in that it can no longer oxygenate air. The heart will still send blood to that portion of the lung, but since it doesn’t work, it becomes extra work for the heart. So, they remove the lobe entirely rather than leave it there to cause problems. I asked how big the left upper lobe of her lung is (because I wanted some perspective on the size of this tumor in relation to the lobe of her lung). I’m operating from a knowledge base of ZERO here, and I told him that. I didn’t realize that much of her lung could be compromised – and is still in danger – and I want to know if this is something that will begin to compromise lung function so that she shows symptoms. He doesn’t know how big that lobe is. It’s on my to do list to Google it…
At this point, I said something like, “Well, if that much of her upper lobe is affected, then how come she’s not showing symptoms?” He said that he’s not surprised that she’s not showing symptoms – it’s not unusual – however, he wouldn’t be surprised if she started coughing and showing symptoms too. So, basically, that could happen…and my guess is if we don’t control this tumor growth soon, it will happen.
I also asked about the minimally invasive surgical procedure that Dr. Yamashiro had mentioned. Dr. Middlesworth performed the procedure under the guidance of a visiting surgeon from Denver and he said that Dr. Yamashiro was observing this in the OR at the time. He explained that the case he worked on was very different from Ana’s case. The tumors were in the chest wall, not the lungs. The Denver doctor looked at Ana’s films and had the same bleak assessment as Dr. Middlesworth. In short, she’s not a candidate for this (and it was likely never truly on the table). Ana has tumors in both lungs, so double thoracotomy is her only option for surgical treatment of her disease – and now this likely involves removing a lobe of her lung. That’s why she’s a poor candidate for surgery – too much lung tissue would be damaged.
Back to radiation. She gets mapped on Friday, we go to LA next week, and she’ll very likely get treatment the week of 2/23 and the following week. The mapping involves a CT scan so we’ll get to check in on the left lobe tumor. Also, at this point she’s getting labs weekly again because of the Votrient.
I hope the weather behaves and we can go on our trip, and go to the hospital when needed, and go, go, go. I do love a good snow storm, but it’s getting a little ridiculous. I managed to drag the girls outside in it yesterday though. It lasted about 15 minutes before we were all frozen and went back in.