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What will I do with the time?

I went with Mom to her appointment with Dr. W today. I met the doctor for the first time. She is the one who called Mom and urged her to consider taking XL 184 because it was getting some good results. I think S was wishing we had gone with the other treatment when Mom was having trouble with her kidneys. (Every time I think of Mom’s kidneys, I think of them with little puckered up faces because they’re so H2O-deprived. Just can’t get that image out of my mind!)

Mom’s electrolytes (calcium, creatanine, phosphorous, potassium, etc.) were mostly within normal ranges! And she hasn’t had IV fluids since last Friday, so she must be hydrating pretty well on her own. The only thing that was still outside normal range was the phosphorous (Are you supposed to capitalize the elements??? We don’t teach that in second grade!). That might be because she begs off taking the nasty phosphorous packets. I stress might be. I mean, taking extra phosphorous because your doctor prescribed it to bring up your low phosphorous levels wouldn’t necessarily lead to higher phosphorous levels. Or anything.

I am sure it’s as disgusting as she says it is (it’s a little powder that you have to mix with water or juice, and she HATES it.) I pointed out to her that if she takes the phosphorous, maybe she won’t have to keep taking it in the future! Mothers.

{When I told Dr. W that I taught second grade at a school in the museum district, she said, “I live right around the corner from that school, and I want to send my girls there!” The girls are 9 month old twins. My school does have a reputation in this town after all! (You would never even know there is a school in this location because there is literally only one small sign with lettering about 3 inches tall near a hedge as you enter the front parking lot . You can tell there is an old red brick church there. And there is a ginormous sign with the church’s name chiseled in stone that you can plainly see as you drive by on the main street.) I love that there is someone with babies AJ’s age who already wants her kids to go to our school! But I digress.}

At an endocrinology appointment last Thursday, the doctor said that she thought the medication must be working because the calcium level was coming down and was even a little low. Apparently, the tumor has a mind of it’s own. It produces a hormone that mimics what the parathyroid does to regulate calcium in the body. Calcium provides the means for electrical impulses to travel along nerves, which is why symptoms of hypercalcemia (elevated calcium) include extreme fatigue, confusion,  and depression. (Building strong bones is calcium’s second job. Its number one job is to keep the nervous system functioning, and the bones are actually “bank vaults” that store calcium and release it when needed.)

Apparently, when you have advanced cancer like Mom has,

… [the cancer] can increase your blood calcium via hormones and proteins that the tumor can secrete. One of these hormones is called “parathyroid-related-peptide“. These hormones can circulate in the blood and cause the bones to release calcium just like parathyroid hormone does.

{High Calcium of Malignancy. If you scroll down the page to the graph with the pink part, you can see that the danger zone for this is between 11 and 14. Mom’s level was 13.5 when MD Anderson identified the problem and started treating it. I have little doubt that if she were still in the Kelsey-Seybold system she would be dead by now.}

That is why Mom’s calcium level has been so high. If the medication is working and inhibiting the dastardly little beast of a tumor, then the hormone decreases and the parathyroid kicks back in and can regulate the calcium for real. Pretty cool, huh?

The endocrinologist thinks the medication is having an effect!!!!

Dr. W seemed pretty encouraged by the results and said that Mom does not have to come back for infusions or blood work until a follow-up appointment in Targeted Therapy next Tuesday. What? What’s that you say? You say she doesn’t have to come to MD Anderson for 7 whole days?????

Whatever will we do with the free time?

2 thoughts on “What will I do with the time?

  1. When i took the baked ziti over yesterday she was glowing.
    This is truly the best news! Do we think the simple adjustment of the dosage has caused this outcome? Should we all take turns sitting with her while she drinks a gallon of water/day.

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