Aug 152015

Pet ScanMy alarm was set for 7:45 this morning, but I woke up at 7:00 and knew there would be no going back to sleep. My first appointment was at 9:30 for my PET scan.

When I got there, they stuck an IV in my arm and shot me full of a radioactive substance called a tracer, which helps to show any abnormalities in your organs or any cancerous cells.

Since it takes an hour for the tracer to spread throughout the body, they took me into a room with recliners and gave me a blanket. I still couldn’t sleep and was kicking myself because I left my book at home even though I knew in advance I would be waiting.

They were scanning me from head to toe, so they had to put me in the scanner twice: once head first; the other time feet first. The first scan took about 25 minutes, during which time I was asked to lie perfectly still. It ended about the time I was beginning to think I was going to get bed sores. The second scan took about another 15 minutes.

When I was done with the PET scan, I drove home, grabbed a sandwich on the fly and John took me to the oncologist’s office. The doctor doesn’t normally see patients on Fridays, so we were the only ones there except for some staff members. After 30 minutes of filling out paperwork, we went in to see the doctor.

The doctor spent quite a bit of time going over the history of my illness and shaking his head at the idea that it took three hospitalizations for me to end up in his office. He was also surprised that I had only been told yesterday that I had cancer. He asked me what I knew about my diagnosis and I told him I wasn’t entirely sure if I had small cell lung cancer, which I know is an aggressive form of cancer, or a lung carcinoid tumor. It turns out it’s not really either of those but has some similarities to both.

Apparently, small cell neuroendocrine carcinoma, which is what I have, is an extremely rare form of lung cancer. That’s why the doctors had such a hard time diagnosing it. It’s a very slow-growing cancer, so I’ve likely had it for years.

Anyway, here’s the plan. The first step is staging. Based on my other imaging studies and the preliminary results of the PET scan (the full results won’t be in until next week), the doctor thinks my cancer is most likely a Stage I, which means it hasn’t spread. To make a final determination, he ordered an MRI of the brain (which he scheduled for today) and a bone marrow biopsy. He also ordered some more blood work and is getting a second opinion from an independent organization on the biopsy results to make sure we’re treating the right thing.

As of now, the doctor said he has no reason to believe this won’t be completely curable, but there are, of course, no guarantees. The cure is four months of chemotherapy and radiation therapy.

After the consultation, the doctor sent me out to talk to his staff and asked them to make several appointments for me. One was for the bone marrow biopsy, one was to have an IV port implanted in my chest for the chemotherapy and future blood draws and one was to meet with the doctor that does the radiation therapy. As I stood at the desk, my head spinning, the staff members handed me some paperwork for today’s MRI, then began making phone calls and handing me cards with doctors’ names and appointment times written on them.

I took the cards and the paperwork for the MRI and was getting ready to go back to the imaging place to have the test done when someone reminded me they needed blood. My veins are almost completely shot from three hospitalizations and multiple blood draws, so they had a hard time finding a good one. By the third miss, I was so overwhelmed I just sat there with silent tears streaming down my face as I waited for them to try again. Fortunately, the woman who stuck me the fourth time remembered I was also going to need an IV for the MRI, so she went ahead and inserted it, then used it to draw my blood.

The MRI was a lot like the PET scan, only it was louder and I didn’t have to wait for an hour for the contrast to go through my body. When the test was over, we went back to the doctor’s office for the results. Thankfully, he saw no signs of cancer in my brain.

Next week, I have a bone marrow biopsy scheduled for Monday, an appointment with the doctor who does the radiation therapy on Wednesday and an appointment to have the IV port inserted in my chest on Thursday. In the meantime, we’ll be getting a second opinion on the biopsy results.

Needless to say, this is all quite overwhelming. But almost as equally overwhelming is the outpouring of support I have received from family and friends, some new, and some that I haven’t seen for many years. I can’t tell you how grateful I am for your prayers, words of encouragement, cards, gifts, texts, phone calls, etc. And a big thank you to my best friend who offered to send me wigs and doo-rags the minute I said the word “chemo.”

 Posted by at 12:45 am

  14 Responses to “Enough to make your head spin”

  1. As hard as your day was, I’m taking it as a positive, all things considered. You are in our thoughts and prayers.

  2. Hang in there girl. We’re all praying for you.

  3. You are so brave to write about your experiences, and you are a wonderful writer. I continue to pray (often and fervently). I love you. Aunt Betty

  4. This all sounds good. He sounds like a very thorough doctor, too. Keep doing what you’re doing.

  5. Hang in there. The first part is the hardest but stay positive. Sending prayers.

  6. Sounds like you finally have a doctor who knows what he is doing. Take it one day at a time. You’ll be in our thoughts.

  7. You are in our prayers.

  8. I’m a friend of your sister, Karen. Have been & will continue to pray for you. It’s mind-boggling how quickly all this becomes your life. But eventually things return to “normal”. I know The Lord will give you much for which to be thankful thru this journey. Thank you for allowing us to be part of it. Blessings & prayers to you & all your family.

  9. Jewels, I know that medical advances are on your side. That it is still traumatic to hear those words spoken to you. But cancer and cancer treatment has came a long way since my days of battle. You will come through this, and will one day look back on this as if it was some scary dream.
    Remember that this will be a life changing experience. I know that my battle made me see lives trivial issue as just that and cleared my mind to enjoy and appreciate the truly blessed things in this world. You are blessed by many things. When it gets to you take the time to breath deep, remember what is held deepest in your heart and fight through for it.
    And package of hair stuff is going out today. Love you!

  10. I hate that you have it at all, but I’m praising God for the fact that things are trending toward stage one.

  11. I am, also, a friend of Karen. I am praying for you along with all of the others.

  12. Glad to see some good news in there, Julie. I am so sorry for your trials, but I am confident you will pull through them. You have a heck of a husband to help you, as well as a wonderful family. Still praying for your well being.

  13. Hey Julie,

    All I can say is, “God bless you and watch over you and your doctors”. I remember when Jack was diagnosed…it really is an absolute shock with so many things going through your mind. He had inoperable cancer in the nasal pharynx, but his doctor felt he could get it with massive radiation…and he did. Jack was and remained cancer free until his death. I have been keeping the family updated and they are all praying for you. Tell John if he ever wants to talk, call his Cuz.
    Love you much,

  14. Gary and I are thinking of you and sending positive thoughts your way. Your blogs are so well written, of course, and it’s comforting to follow your progress in fighting this insidious disease. Take care. We love you.

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