Good News/Bad News
There are two Facebook updates I want to share here, starting with the good:
Last night the girls chatted on the beach in the evening and to look at this picture, you’d think they had forever to sit there and be young…but even yesterday, signs of reality were creeping in. Ana was getting short of breath and very quickly fatigued from swimming and walking on the beach.
So, I actually welcomed her scan this morning even though I also dreaded it. We all packed up our stuff and left the beach behind by 8 a.m. When Dr. Yamashiro met with us, I was expecting the absolute worst. But, it actually wasn’t that bad. She has some progression – tumor growth, but he feels the current drug cocktail she’s on is slowing things down. She was cleared to go to Germany with Rock Academy on 7/11.
Also, some unexpected hopeful news. They did additional testing on the tumors that were removed in December and found a new mutation to the p16 protein, which is apparently present in many cancers. There is a drug, Ibrance, that targets the pathway for this gene. Dr. Yamashiro is already working on getting this drug. This is really huge news, though I’m cautiously optimistic.
Today we also met with the palliative care team as a proactive step in dealing with Ana’s symptoms. The shortness of breath isn’t going away anytime soon. This is a new normal for Ana, but it was comforting when Dr. Waldman assured Ana that just about any symptom she might have could be managed.
And, the bad. Posted 7/8/16:
So, although I posted the good news that Ana was able to go to Germany next week, and that her progression wasn’t as bad as it could’ve been (compared with the progression from January to April), I didn’t really have any detailed information about what’s actually going on with Ana. I have that now.
Sit down. Get some coffee or tea. Hug someone you love…
I received a copy of Ana’s scan report on Tuesday and, well, it’s just very bad. Her shortness of breath is a result of the left upper lobe of her lung collapsing from a 6 cm tumor which is compressing the lung’s air sacs – a phenomenon called atalectasis. The tumor’s been there for a while, but it’s now at the point of taking over that portion of her lung. She has additional new masses in her right middle and right lower lung, and additional atalectasis in the right lower portion of her lung. This means that both lungs are not functioning at 100%. This is going to get worse, obviously, but for now Ana is able to function (mostly) normally though with shortness of breath on exertion. I’m noticing that she seems more easily fatigued as well.
New normals…they’re hard.
Ana has two new masses near her spleen and a third mass on the tip of her spleen just about doubled in size, from 3 x 1.4 cm to 5 x 2.5 cm. Multiple masses in her abdomen and pelvis have grown – the largest is 6 x 5 cm. She has a mass near her iliac artery which may be an enlarged lymph node or a tumor, but it has also grown a lot since April (4 x 3 cm vs. 1 x 1 cm).
Jim and I had a call with Dr. Yamashiro yesterday because I wanted to get clarification on what tumors could possibly cause what problems and if he thought she’d have any kind of major pain event within the short term, but his answers remain frustratingly vague. There’s no way to know what can happen, though he did say that the most likely cause of discomfort will be increased compression of her lungs.
Suffocating…slowly…is that what’s happening? I can’t even stand to think about it. There is some (small) comfort in having the pain team on board at this point and in Dr. Waldman’s words, “we can ease almost any discomfort that comes up – including difficulty breathing.”
Dr. Yamashiro is working on getting the new drug (Ibrance) which he hopes will slow or even halt disease progression, but he doesn’t expect it to shrink any of her tumors. He thinks she’s going to be fine in Germany. She’ll need to honor how she feels, pace herself, and if necessary she can take pain medication (he’s prescribing oxycodone again and will be giving me a note to take to the airport).
Many of you reading this have been with us from the beginning of this horrible journey and many have joined us along the way. At this point, I want to warn you that it’s about to get very real very quickly. If this is too much for you, it’s okay to drop out of this group. I’m very grateful for everyone’s support always, but we’re in a free fall now. There’s no stopping what’s coming.
We’ve already had to say no to Ana to something she’d been anticipating for months – a two-week trip to the West Coast in August. We feel it’s just too dangerous for her to be that far away from her care team (and her support team – friends, family, Roo) for that long. She spent the day in bed, crying and refusing to eat. But after hours of despondency, she came downstairs, claimed she was hungry and threw a bowl on our borrowed potter’s wheel. She’s so strong. I wish I was as strong as her.
Sometimes it’s hard to know what to say to me or Jim (or Ana), so I want to recommend an article that my amazing therapist told me about. It explains something called “The Ring Theory” which provides some simple guidelines on how to talk to someone in the midst of trauma. I urge everyone to read it. It’s called How Not To Say The Wrong Thing.