Aug 042016

Chest x-rayI left the house at 6:00 a.m. yesterday morning for an 8:00 a.m. PET scan in Orlando. After checking in, I was told to go to the lab to have my port accessed and my labs drawn. I was a little leery about having my port accessed because I’d been told they wouldn’t be able to use it for the PET scan and I didn’t want to get stuck twice. But after being assured by four different people they’d be able to do it, I went ahead and let them access it.

When I got to the place where they were going to do the PET scan, I told them I had a port. And they said they couldn’t use it. Needless to say, I wasn’t too happy. I only had one good vein to begin with and between all the IV lines and needlesticks, it isn’t looking so good. So the guy doing the PET scan made some calls and finally decided he could use the port.

Once they got that figured out, they injected me with radioactive iodine, after which I had to sit alone in a room for an hour. After about 30 minutes, someone stuck her head in the room and told me my oncologist wanted me to come straight to her office after the test. The original plan was for me to have an MRI of my brain after the PET scan, then I would see the doctor at noon.

Since my oncologist wouldn’t have any of my test results when I went to see her, I knew something was up. My best guess was my sodium was really low again and she wanted me to go to the ER. So I called her office. The woman I talked to told me to skip the PET scan and come on up. But I couldn’t do that because I was already radioactive, so I went ahead and had the test done first.

Even though the oncologist had been in a hurry for me to get up there, it took me awhile to get in to see her. I was guessing she was waiting for my test results. I was right.

When she finally came into the office, I asked about my sodium. She said it was 115 (the last time I was in the hospital it was 119). So I asked if the cancer was back and she said it was. It has spread to my liver. She wanted me to be admitted to the hospital in Orlando so we could get my sodium up and then start chemotherapy. I wasn’t really sure I wanted to do that because last time we’d talked about my options if the cancer were to return she said there was only a 15% chance chemotherapy would work. So I asked her about that. She said if the cancer had come back within the first six months that would have been true. But she felt the odds were higher (she didn’t say how high) since it’s been more than six months. And if we don’t do something to treat the cancer right away, we can’t correct the sodium problem.

Next I asked about clinical trials. She said they just finished one at the cancer center here and she wasn’t sure if they’d be starting another one soon but she would check. She also knows all the doctors at Moffitt in Tampa, so she’s also going to check with them. But it takes some time to get into a clinical trial and again, we have to get the sodium issue under control first.

In the meantime, my sister had already called MD Anderson because I’d suspected the cancer was back when the my sodium went down a few weeks ago. They said I can’t even get in to talk to anyone there about a clinical trial until I’ve exhausted all my other treatment options. I suspect there won’t be time for all that at that point,

So today I was admitted to Orlando Health, and they gave me the pill to try to bring up my sodium (I’ve been going back and forth with the doctor’s office and our mail order pharmacy to get a prescription for that, but that’s a whole other story). If my sodium is up tomorrow (today, actually, as it’s now 4:40 a.m.), they’ll start chemotherapy, which I’ll get every day for the next three days before being discharged. Then we’ll wait 21 days and do another round (over three days again) and see where we are. If it’s not working, we go for a clinical trial.

After giving me some time to think things over, my oncologist came back to talk to me this afternoon. I was pretty sure I knew the answer, but my first question was, “Do I have lung cancer that has spread to my liver or do I now have liver cancer? Her answer was I have stage IV small cell lung cancer. I knew that wasn’t good. In fact, it’s terminal. So I asked how much time I would have if I decided not to do chemo. She said 3-6 months. So I asked how much time if I do the chemo. She said possibly up to two years, but I’m pretty sure that’s an optimistic estimate.

Don’t get me wrong. I’m not giving up. If there’s a clinical trial I’m eligible for, I’m definitely going to try it. But I’m also trying to be realistic and think ahead. I prefer quality over quantity and don’t want to spend my last days in a lot more pain than necessary because I waited until the last second to call hospice. I told my doctor that and she said I was absolutely right to be thinking that way because a lot of people wait too long and end up suffering needlessly.

In the meantime, I’ve been seriously stressed about the huge pile of work on my desk, so I’ve decided I’m going to contact all my clients and just get rid of it. Then I’m applying for disability.

 Posted by at 9:34 am

  19 Responses to “A devastating blow”

  1. Julie, even though we have not laid eyes on each other in years, I feel very close to you. As you know, I have been battling some major healt issues myself and your strong spirit and your blog has helped get me through some horrible days. The other day the law firm gave me a thirty day unpaid leave of absence so that I could determine whether I wanted to continue to work there because I seemed very unhappy. It was the straw that broke the camels back as they say. I had decided between this (the fact that these people I have known for years didn’t take into account everything I was going through as a possible reason for my unhappiness and maybe they could handle things a bit differently) and my on going serious health issues I was going to end my life. So I took what I knew would do the deed and proceeded to say my goodbyes and once I felt the pills taking affect, I would simply hit the post button and that would be it.

    Obviously, my attempt failed ( I should not of tagged people, but rather just mention their names) and I was upset and angry at first. I blamed my parter for not allowing me to just fall asleep. I have lost several meaningful, beautiful people this year from cancer. I alone have had 4 different types, but I realized I was being selfish and seeing how hard yourself has fought, I feel pretty low for considering that way out.

    I truly love you, my friend, and I know you have plenty of support around you, but if you need anything please let me know. It would be nice to talk to you, but I also know talking about everything is tiring and gets very old quickly. May they (the doctors) be wrong and God be watching over you. I apologize for any grammar errors, but I don’t think I can re-read what I have written.

    Much love and Godbless,
    James Courtney (McCoy)

    • Jim:

      Don’t feel badly for doing what you felt you needed to do at the time. I seriously considered just not putting any food or water in my feeding tube for a few days and just being done with it myself.

      But I’m glad you didn’t succeed in your attempt. You have family and friends who love you. I pray for you every day.


  2. Julie,

    I lost my mother to lung cancer 32 years ago. They have come a long way since then. You are in my thoughts and prayers. I live about 1 1/2 hours from Orlando. I would like to try to come see you sometime. Take care and keep your chin up. Remember “You are strong” You are a woman. Just like the Helen Reddy song. Hope that put a smile on your face.

    Karen Carr

  3. Jewels,
    I cannot make a decision for you or even help with what you need to do. The way I see this is you have gotten stuck in the middle of a moral decision. What you do from here is what you must do that is best for you and no one else. Our morals and values our own help guide us to what we must do in this life.
    I love you and will defend whatever you decided to do as that is your decision. I have always thought of you as a smart person and that will never change.
    I have the beach house and would love for us to escape when you need it. I am sorry that you have to go through all this. Also I am here for you no matter what.

    • I know. You always have been, and thank you for that. I’ve already contacted my major clients so that’s done. And even though it was hard, I feel like it was the right decision. Now for all this pesky medical stuff…

      Love you.

  4. Thank you, Karen, I feel as if I know you already and am sorry things have turned out this way. I admire you tremendously for your common sense and serenity. I am sure you are not calm yet you manage to convey peace to those reading you, the assurance that, one way or another, everything will be fine. Best of luck with whatever treatment you choose and please keep writing.


    • Thank you so much for your kind words. Just so there’s no confusion, I’m Julie. Karen is another of our sisters.

  5. Julie, I am completely stunned and saddened by your news. I am so sorry. How could it have turned into small-cell? You seem to have amazingly clear thinking, however, and your plan is logical. Right now, you need to concentrate on medical issues rather than work. We will keep you in our prayers.

  6. Keep strong Julie, dont give up! Cancer is a bitch but it can be beaten. I know what youre going thru, just recently helped my dad get thru bladder cancer and let me tell you something. It was so hard sitting with my dad while he went thru chemo treatments, at times I wondered if it was worth for him battle cancer at his age. It wasnt easy but we got thru it and he is cancer free and more importantly I got to spend at least another year with him. I will pray for you my friend

  7. Julie
    I don’t know what to say I am in shock. Like Gina said I support you in whatever decisions you make and do. I am here for you and would love to see you if you come back up to K C. Love and miss you my friend. Big hugs Renee

  8. I am soo sooo sorry to hear your news, Julie. I wish I had that magic wand and could make you and all others who suffer from cancer, cancer free!!!

    They have came a LONG way through the years and continue to make progress daily…which is very encouraging!!! Hang in there….thinking and praying for your daily. BIG, BIG hugs!!!

  9. Julie, I am so sorry. I will keep praying for you. I am actually heartbroken over your news, but happy you are not giving up! Hugs!

  10. Dear Julie,
    Your news is both heartbreaking and your courage inspiring for those of us following your blog. Please don’t stop writing. There are so many trail-blazing trial studies out there now, I hope you will find that magic one that works for you. And whatever your decisions along the way, let them be yours and yours alone.You have a chorus of well-wishers behind you sending love and peace.
    Susan (friend of Teresa)

  11. Oh, Julie, that is crushing news. I am so sorry to hear of your on-going trials. Please know that you remain central in my prayers for healing and comfort. My mom asks about you and how you’re doing almost every time I see her. She is praying also, as are my brothers and sisters. I am quite confident that whenever your courage fails, your incredible family will supply it for you in abundance. May God grant you strength and peace of mind as you continue this battle.

  12. Hey Jules, there is nothing I can say that will help you get better, yet you have said a lot to those who may get sick in the future, and may they recall how you kept your chin up and not blamed God or anyone else for what is taking place to you.

    Shit happens to all people at some point, that is life.

    I am glad to have known you.

    Good vibrations out to you along with this hug.

    And let me sign off with words from others:

    “Happiness is a choice that requires effort at times.”
    – Aeschylus

    “The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly.”

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