There is NO cancer in my pituitary gland. Or what there is left of it. I got the results from the MRI of my brain, and they definitely did not see any breast cancer metastases in my pituitary.
This is a really good thing. Average lifespan from diagnosis of pituitary breast cancer mets is 180 days. I am WAY too busy to spend the next 180 days dying. However, they would have treated those mets, either with surgery (through my sinuses behind my nose… actually kind of cool) or radiation and I would have felt better FAST. Until the masses in my right lung started to grow, or the troubles in my brain came back…
So if it isn’t a tumor (which the doctors still maintain was the overwhelmingly most likely reason for the “failure of the pituitary adrenal axis”) what is it (other than a miracle which I attribute to the intercessory prayers of more than a thousand people) ??
It looks like I probably had some damage to my pituitary while in childbirth with George. I had one severe scary episode of super-low blood pressure that I had totally blocked from my memory (but Dixon remembered all too well) … and then despite successfully nursing for 14 consecutive years, I had weeks of no milk after delivery… Part of it was that George couldn’t nurse because of his prematurity and downs, and pumping will never be as effective as a healthy term baby, but we still thought it was rather strange at the time… It turns out that lactation failure should have been a clue that something significant was going on.
Why didn’t I have any symptoms of this “pituitary adrenal axis failure” before now? Because between the cancer (with chemotherapy, radiation pneumonitis, nerve damage, etc) and my arthritis, I’ve had enough steroids over the past little while to hide it. It was only when we stopped the steroids (mostly because I couldn’t tolerate the side effects and weight gain any more) that it became obvious that there was a problem.
So what’s the plan? Other than prayers of thanksgiving that I’m not having brain surgery next week? Well, first I had a long appointment with an excellent endocrinologist, who put me on twice a day adrenal hormone replacement and taught me ALL the rules about managing the emergencies and sick days with adrenal insufficiency. I worry that I’m going to become very well known in the emergency room. I have an indestructible medical alert bracelet, too.
Here’s the problem: we need to see if my adrenal glands might ever start doing their job again. If the endocrinologist gives me 100 % of the recommended daily allowance of pituitary/adrenal chemicals, they won’t ever be motivated to even try. So we have to use less. How much less? Just enough less that I am weak, tired and nauseated, but not hypotensive or vomiting. For two months. Then we can see how things are going.
I’m really not ungrateful for my miracle. I am in awe of the fact that I got to have another miracle. You know, some people go through their whole lives without any. But TWO MONTHS of mandatory weakness, fatigue and nausea (when I’m not pregnant 🙂 ) just seems rather overwhelming. And the timing is rather ironic… my two months of weakness will be over right at the same time as my next round of evaluations for the masses in my lungs. I can see it now…. getting through with this nausea just in time to start the next rounds of chemotherapy. Ugh.
I’ve been good about not apologizing for all the things I’ve been unable to get done while I’ve felt so bad. But I think perhaps I do need to apologize for not being more grateful about my miracle. I just get tired of feeling bad sometimes. Thanks for being so understanding and patient with me.