Oct 292016

HeadacheYesterday, I went to see the oncologist to go over last week’s PET scan. The good news is, there’s no visible cancer. The bad news is, my sodium was down to 125, which means the cancer cells are still at work. And since chemo is no longer an option and there’s now no liver tumor to ablate, we have to find another way to stop them.

So my choices now are to try to get into a clinical trial or to just go ahead and start taking one of the two experimental drugs that are now being used to treat non small cell lung cancer (Opdivo or Keytruda). Both drugs are so new there’s no known advantage to one over the other, which means we have more than one option moving forward.

If I do the clinical trial, it will likely be paid for by the study. If I don’t do a trial, I can try to get insurance to pay for one of the drugs, or I can see if I can get the drug company to pay for it (since it’s to their advantage to prove their drugs are useful in treating small cell lung cancer, the oncologist believes this is a viable option).

When I got home, I called the Orlando oncologist to ask about the upcoming trial at the University of Florida Cancer Center. She returned my call a few hours later. The study is expected to begin sometime in November and last for 16 weeks (although I can continue to take the drug for as long as it seems to be working for me). This seems like a reasonable place to begin, so I had my name added to the waiting list. Here are the trial details for those who are interested.

While we’re waiting for the clinical trial to begin, we still have the sodium issue to deal with. I’m a little bit miffed that the oncologist had told me previously he’d take care of ordering the labs and getting the results to the nephrologist. Not only did that not happen, but today, he decided to whine about how it wasn’t really his job, then he cut the lab work down to once a week. He also put it on me to get the results to the nephrologist (the oncologist’s nurse said she’d take care of it, but I’d still feel the need to follow up).

There’s also the issue of paying for the Samsca. I now have eight pills left, which are going to go quickly with nothing to keep the sodium  in check. The regular cost of the med is more than $300 per pill. The oncologist had also assured me their financial person would take care of that for me. Today, he began back peddling. He Sent us upstairs to talk to the financial person who barely remembered my case. She said she’d get back to me.

Another detail from my most recent hospital stay that needs to be resolved is getting me off the steroid I was started on to help with my breathing. The ENT made the initial suggestion to start me on it, but my PCP wrote my final prescription and told me the oncologist was in charge of getting me off it. The oncologist didn’t like that and wants me to make a new appointment with the ENT. I’m not even sure if the ENT had anything to do with writing the initial prescription for the drug. And it will probably take me at least two weeks to get in to see him.

So after planning to take a break from all of this mess just one short week ago, I left the  oncologist’s office with a big to-do list and was feeling downright grumpy. Why is there no coordination of care in our healthcare system and why does it fall on the patient to take care of things like making sure doctors get lab orders and starting and stopping prescriptions?

When I got home, I decided to call the hospice/palliative care place and see if maybe they could give me some help with coordinating some of these details. It turns out it’s not quite as simple as the doctor made it out to be, either. Since I’m going to be doing the clinical trial, I knew I needed to sign up for the palliative care, but the number I was given was only for hospice. I was given the new number and made the call. It turns out I need a referral from my PCP to even get an appointment. So I hung up and left a message for  my PCP’s nurse.

The nephrologist’s office is closed on Friday afternoons, so on Monday, I’ll need to call and see if he can send a lab order to my home health agency so my lab results will go directly to him.

That left getting off of the steroid, which I decided to ask the PCP about as well before calling the ENT.

Later in the evening, I was still feeling grumpy and whining about not being able to eat or drink anything with the holidays coming up again. Whether or not to have my esophagus dilated again is yet another unresolved issue I still need to deal with. My sister was here and she and my husband were sort of pestering me about the whole thing telling me that nobody had actually told me not to try drinking anything and that maybe I actually could swallow.

Although it’s true nobody flat out said no more eating or drinking at this time, I was choking when trying to eat before I went to the hospital and have been told more than once not to take the chance of aspirating. Since I was already in a bad mood, none of this did anything to improve it. So I had a hissy fit. I got up, grabbed a cup, poured some water and took a big swig to shut them up. Yes, I choked a little. And some of it went down. Then I cried. It’s exhausting being this sick all the time, and no matter how much people want to help, they really can’t possibly know what you’re going though. But it’s also not like you want them to stop trying.

Overnight I decided maybe they were right and I should just try to eat something and see how it goes. So I got up this morning and opened some of those little pears that come in the cups. They’re about as soft as anything. It didn’t go well. I may have gotten some of it down, but more came up than not. All of this made me decide that eating is definitely a priority, though, even while I’m on my “break.” So my first call on Monday will be to the ENT.

 Posted by at 10:05 pm

  7 Responses to “The best laid plans”

  1. Those that love you mean well, no one wants to see you in pain, or sick, or frustrated… But (speaking for myself) I am at a loss in how to help, what to do, what not to do. And believe it or not some times I am at a loss as to what to say except I LOVE YOU. Don’t be to hard on yourself or them. But if you must yell at someone, I am here for you always.

    • Very well said Gina!! As am I!! I will always be hear no matter what!! Yell scream cry laugh (I hope) I am here!! We love you and think about you everyday! Wish we could be closer especially during these times!! Love you to the moon and back!

  2. I’m so sorry you have to go through this. I know I am just your neighbor and don’t know you as well as others but I do know our loved ones mean well and try their best for us(which my sister in law said was annoying at times) . I’m also annoyed that you have to do all the follow up on your medical care. If you need anything I would be happy to help you.

    • Thank you for being there for her when it is so hard for us so so far away!! Thank you for that!! Julie is a wonderful women/mother in law/ grandma……

  3. Like Gina, Alice and Nicole all said sorry you are going through all of this and it seems like its up to you, the patient to take care of appointments! Its maddening! We all love you and I am thinking of you! Hope you get a break soon. Big, big hugs! Renee

  4. When Pat was diagnosed with cancer they told her “people will try to help and sometimes you will just have to say to them, “that’s not helpful”. You are just overwhelmed right now and being sick all of the time and being tired all the time just makes you sick and tired and yes, after so long and so much frustration, a bit grumpy. Just breathe. Stop, close your eyes and just breathe. It’s ok to stop and just do nothing for a little bit…just be. There should be someone to coordinate all of this for you. A hospitalist maybe? Would that be a place to start? I pray all of the pieces to this mess will come together very soon. Hugs and prayers. Do what you can do, ask for help for what you need and know that those who love you are only trying to help…helpful or not. U R Loved.

  5. “Why is there no coordination of care in our healthcare system and why does it fall on the patient to take care of things like making sure doctors get lab orders and starting and stopping prescriptions?”

    I know exactly what you mean. It was the same 15 years ago when my mother was ill. So much for blaming Obamacare. My sister & I would fax her medical info to the hospital each time only to find she was getting all the wrong food & no one was monitoring her diabetes. She got hepatitis after a blood transfusion and only I noticed her eyes were yellow one day I was visiting. Afterwards the file documenting that procedure “disappeared.”
    I don’t want to add to your paranoia, only to reassure you that it is healthy to be paranoid if trapped in the American health system. It’s documented that the most “difficult” patients are the ones who do best. So keep questioning and keep bitching and you’ll be fine.
    Best of luck to you and keep us posted.


 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>