When it rains…

The last several weeks have been rough on me. I’ve spent around five of the last six in the hospital.

Because I’ve been so ill, my Orlando oncologist decided I was too sick to handle any more chemo. On the other hand, my sodium was dangerously low again and she had no other treatment options to offer me at the time.

So I returned to the hospital in Melbourne and asked the oncologist there what he thought I should do. I was running a fever and my blood pressure was often dangerously low (80s over 30s or 40s), so they admitted me to the ICU. The doctors there suspected an infection of some sort, so the first order of business was to get me well enough to treat me for the cancer, which in turn would ideally get my sodium under control.

A chest x-ray and CT scan of the chest showed the pneumonia I’d had earlier in September had cleared up. More tests didn’t turn up any other obvious infections. Still, after being given some broad spectrum antibiotics, my fever went away and my blood pressure began to improve. I also started feeling better for the first time in a month.

Last week, the Melbourne oncologist decided I was well enough for chemo, so I was given my second round. I tolerated it pretty well, but it didn’t get my sodium back under control right away; every other day I was having to take a medication called Samsca to bring it back up again. And they couldn’t let me go home until they could figure out what to do about my sodium.

The nephrologist (kidney doctor) had previously tried to get my insurance company to approve the drug for home use with no success. It seemed our only choice now was to try again. Fortunately for me, the person who is in charge of our insurance pre-authorizations is very familiar with my case and was willing to go to bat for me to help get me the drug. She told the hospital case manager to find a place where I could obtain the drug and she would take care of the rest.

Finding the drug was easier said than done. Samsca is a specialty drug, but none of our area specialty pharmacies had any in stock. Oddly enough, the case manager was finally able to find me some at Walgreens of all places. At a bargain price of just $1100 for 10 pills (ouch!). Since that was the only way I was getting out of the hospital, I agreed to buy the pills. I’m going to have to find some prescription assistance going forward if it turns out I need more.

The day before I was to be released from the hospital, my husband called and said he’d been involved in a four-car pile up (thank God he’s okay). A young girl was texting while driving and slammed into the car behind him; that car hit him, and he hit the car in front of him. Our car was totaled. There’s no way we can afford a new one, so we’re going to have to get by with one car for now. My dad lives in an independent living community and says he sometimes sees newer cars with lower mileage for sale at bargain prices, so he’s going to keep his eyes open. We got a decent amount of money for our car, so maybe something will come up that we can afford down the line.

When I got out of the hospital, my sister came up and spent a day in my kitchen cooking me some healthy meals that I could freeze and reheat. We put them all in Tupperware containers (some in the fridge and some in the freezer). That night, the compressor went out on our refrigerator. We had a repair person come out the next day and the part’s still under warranty, but it will take them at least a week to get it. So we went to Home Depot and bought a dorm fridge, then put the rest in coolers and took it to my Dad’s for now (his meals are prepared for him, so he barely uses his refrigerator/freezer). Thankfully, we were able to save all the food my sister prepared for me (and most of the other food we had stored). I think we’ll be able to make do until we can get our refrigerator/freezer repaired.

On Wednesday, I have an appointment with the oncologist to talk about a long-term plan for controlling the cancer. My next chemo is scheduled for the week of October 18, and I will likely be getting another PET scan in the next few weeks to see if there are any new tumors.

In the meantime, I have a home health nurse coming out on Mondays and Thursdays to do my labs. My sodium was low again today, so now I’m down to nine Samsca pills, but at least I’m not in the hospital.

That’s it for now. Thanks for reading my blog. If  you’d like to help me with my battle with cancer, please go to https://www.youcaring.com/julie-mears-henry-495041.