Dec 312016









I was expecting company for Christmas and was praying I’d stay out of the hospital. One of my sisters from Kansas City and her family were coming, as were my Dad and another sister who both live in Florida.

With my sodium dropping the way it has been it was sort of touch and go as to whether or not I was going to be home or we would be celebrating in my hospital room.

I love to entertain, so I went all out getting stockings for everyone (we all bought stocking stuffers and wrapped them ourselves), putting up the tree, decorating the house, cleaning, and making sure we had enough food for everyone.

When my family arrived, everyone pitched in and helped make fudge and prepare Christmas Eve and Christmas Day dinners. My sodium continued to drop in the days leading up to Christmas. By Christmas Eve, it was too low to continue to ignore, so the nephrologist ordered a 3-hour IV drip of a concentrated sodium. He arranged for me to have it done as an outpatient so I could be home with my family on Christmas. My Kansas City sister sat with me while the rest of the family found other things to do. Then we went home and we all had a wonderful Christmas.

My family all left the day after Christmas. It was particularly difficult to say good-bye to the ones who live in Kansas City. I couldn’t help but wonder if I would ever see them again. But then again, I wondered the same thing about all of my family when I went home last summer for my niece’s wedding, and I’ve seen several of them since.

On Thursday, I went to see my oncologist, after which I was supposed to have my Keytruda infusion. I wasn’t feeling well because my sodium had been slowly dropping again; as a result, I’d been vomiting. The oncologist asked me how I was feeling and I told him not so good. Since we’d had a discussion before about whether or not I should continue the Keytruda, he brought it up again.

My husband asked him if the Keytruda could still be causing my sodium to drop after almost three weeks and he said, “Absolutely.” The Keytruda is an antibody, so as with an immunization that’s made with antibodies, the effects will last long after we stop the infusions. And at this point, they have no way of knowing whether the Keytruda is doing more harm than good. Because of all this and the difficulty they’re having in bringing my sodium back up, the oncologist asked if I was apprehensive about getting another infusion and I told him I was. So we rescheduled for next week so I’d have a little more time to think it though. Our only other option right now is more chemo. I think I’m going to go see the the oncologist in Orlando for a second opinion. Although my oncologist says he’s been consulting her all this time, I want to make sure we’re all on the same page. And she does a lot better job of explaining everything than he does.

My sodium had been steadily dropping thoroughout the week and by Friday it was down to 116. With the long weekend coming up, I figured it was time to do something. My oncologist told me on Thursday if I wanted to go to the hospital, he’d arrange it so I could skip the ER.

So that’s where I am now. The oncologist came by to see me first thing. We again talked about the Keytruda. Since Thursday night I had been wondering if there’s really any harm in me having another Keytruda infusion if the effects from the first two are long-term anyway. We’ve been dealing with the sodium problem since after the first one and I’ve already had a second, so why not have a third? So I asked him that question and he said no, he didn’t think it would make any difference. So why didn’t he tell me that on Thursday? If he had, I would have gone ahead and had him do it. They can’t do it while I’m in the hospital because the drug is off label, so I’ll have to wait until next Thursday now.

We had also been wondering if the sodium problem had worsened because the cancer had worsened, so we asked if he could do a scan while I’m here. He said he could, but he wouldn’t be surprised if the Keytruda caused the cancer to worsen before it got better. Yet another reason for me to do another round of the Keytruda. And he said it would take six rounds before we would even know if the Keytruda’s working. I told him I hoped I would be alive long enough to make it through six rounds. He told me I would. He seemed pretty confident about that, which made me feel a little bit better.

Now I just need to hear that from my nephrologist, who hasn’t been in to see me yet or written any orders, even though he’s been consulted. My sodium has already dropped from 116 this morning to 113 this afternoon, but the hospital has standing orders from before not to call the nephrologist with critical values. My nurse said they’d probably call in the morning anyway if it got any lower.

I’m not sure what the nephrologist is going to do at this point since the Samsca seems to no longer be working, but my oncologist mentioned an antibiotic called demeclocyline that used to be used for SIADH that they may want to try. The nephrologist has also mentioned it before but he said it wasn’t as good as the Samsca and has more side effects. They might also give me another infusion of the concentrated sodium solution. I guess I’ll find out tomorrow.

 Posted by at 4:31 am

  7 Responses to “A bittersweet holiday”

  1. Julie, you are such a strong warrior. Please keep the faith I pray that they give you the best drugs to get you through this. God Blrss you!

  2. Jewels, as I am at a lost of words to comfort or to help in your very unusual, uneasy health dilemma. I pray, I take my healing breaths for you when I meditate, Maybe I need to go light a bunch of candles… Anyway I love you and I wish I could be helpful in some way. I am sure a lot of us who love you feel pretty useless in this fight. I know that I am being delayed in my trip to see you but I will be there to see you.
    You do what is best for you, what you feel is your best options. And we all will pray that this soon will be over and we will be at the beach.

  3. You have such a good family. I am glad you enjoyed Christmas. I will continue to pray for you. I wish I could do more.

  4. Julie, I am so glad your family got to spend Christmas with you! I know how helpful it can be to be surrounded by those who love you so very much. You have countless people praying for you, myself included, and I really believe you will conquer this. You have always been among the strongest people I ever knew, which you have shown over and over again. God bless, keep, and heal you, Julie.

  5. I have been reading all along, when Teresa shares your blog links in Facebook. I am so glad you spent Christmas at home with your family. You and all your family are in my thoughts.

  6. I’m glad you got to spend Christmas with family but sorry you have so many difficult health issues facing you. As always, I am praying for you. Love, Aunt Betty

  7. Navigating the medical system through Christmas and New Year’s is extremely difficult. I wish you strength and clarity as you go forward and the last words from the oncologist sound hopeful. Happy New Year.

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