Jul 102018

It seems I left off while I was waiting to get my second Navelbine (chemo) treatment. The Zarxio had brought up my WBC, so I was finally able to get my treatment the week after I had all the shots.

A day or two after my second round of chemo, my throat again started to burn, confirming my suspicion that the Navelbine was causing mucositis. I again wound up having to take a few doses of oxycodone to get rid of the pain. In the meantime, I developed severe stomach cramps. I called the oncologist’s office, and he prescribed dicyclomine for the cramps. It took a few days, but they finally went away.

One thing of note. Since I couldn’t remember to take the CBD oil four times a day, I had switched to four drops three times a day. It did nothing to relieve the throat or the stomach pain.

When I went to see the oncologist the following week, we decided the Navelbine wasn’t right for me. So he switched me to Gemzar. For this chemo, I was told there would be no side effects except for low platelets (so, bleeding and bruising). I asked about hair loss; he said he couldn’t make any promises. But that’s not a common side effect of Gemzar.

I started on the Gemzar last Friday (treatments every two weeks). When I got home, I ate lunch, then took a nap until it was almost time for dinner. The next day, I went to sleep right after lunch and pretty much slept the rest of the day. So much for no side effects.

I can feel my body growing weaker, which has caused me to wonder if I really want to go through the whole chemo thing again. Maybe it would be better for me to try a clinical trial (if there are any available for small cell lung cancer). The chemo drugs I’m taking now have been around for years, and they only have a 50/50 chance of temporarily controlling the cancer. And each one I try will likely have worse side effects. If I try an experimental drug, I might have a slight chance of survival. Or a better quality of life. Or the chance to help others survive.

Another thing I’ve considered is just stopping the chemo and enjoying what’s left of my life as best I can. My biggest barrier to that is the SIADH. If I were to go on hospice (which I would definitely want to do), I’d no longer be able to do any treatments that aren’t palliative. Without the Samsca, I’d likely be dead in a week or two. Maybe sooner.

This week started out with a blood draw to check my sodium. I was actually hoping it would be low because I’m about out of Samsca. My nephrologist’s office was never able to get me the last 24 pills, so I knew I would need a hospital stay to get some. And Monday is the best day to go to the hospital if I don’t want to be stuck over the weekend. I also needed to time my hospital stay on a week I don’t have chemo. And we have company coming on Thursday.

I guess I’ve gotten pretty good at knowing when to take the pills and when not to. My sodium was 120. My nephrologist had told me when I was ready for my hospital stay, he would call and get me a bed instead of sending me through the ER. That didn’t happen. So I didn’t get to my room until around 7 p.m., and I didn’t get my dose of Samsca until 9 p.m. And I’ve been up all night getting rid of the excess water. Believe it or not, I’ve lost as much as 7.5 pounds in a day after taking one Samsca pill.

My oncologist stopped by this evening, which surprised me because he usually comes very early in the morning. He said, “What do I need to do to get you these pills.” My mind drew a blank (happens a lot lately). I sort of stammered, “I need to see the…” My mind was thinking social worker, but I knew that wasn’t the term I was looking for. Lucky for me, he finished my thought “…case manager.” The case manager will have to get with the drug manufacturer. He (or she) will also have to run the drug through my insurance company (yet again), and wait for them to reject it. This usually takes around 3 days, so I’m hoping to be out of here by Thursday.

In the meantime, the chemo causes my entire head to ring, and I feel like I’m moving through a fog. And I can’t help but wonder what people see when they look at me. It seems surreal that I could feel so broken but look so normal. It’s like I’m walking around with this weird secret. Sometimes I just feel like blurting, “I’m dying. How can you not see that?” I don’t bring this up to be morbid or to garner sympathy. I’m just trying to be as honest as possible about what it’s like for me to face my own mortality.

That’s all for now. Thanks for sharing my journey with me.


 Posted by at 8:47 am

  13 Responses to “Things that make you go “hmmm””

  1. Jewels,
    “All I can say is what a long strange trip its been”. That is from a grateful dead song. For you I will say it should be what a long painful, full of surprises, and big decisions, and bad medicines it has been.
    There is a saying that also goes no one can walk in others shoes because everyones journey is different well, that is so true also. I can empathize with you on your journey but in reality I have no idea what your journey TRUELY makes you feel, or think.
    I know that you give me strength, you have made me a better person and that I will always love you. And I hope that makes a smile that beautiful smile of yours.

    • Intellectually, I don’t expect anyone to get it. Emotionally, I wonder how they can’t see it. Like I said, as I go about my business, I just feel like I’m carrying some strange secret. Definitely a long strange trip. Love you, too. Hope your day is off to a good start.

  2. Our healthcare system is so fractured… I admire your ability to navigate, ask for what you need, endure through such inept and arduous situations and still… write so that we may learn through your journey. Your warm smile remains intact… I am sorry they do not see past the exterior, you deserve better. Praying and holding you in a vision of complete healing.

  3. Julie,
    When I read your posts I immediately think how brave you are and how generous you are to share this journey with us. You are in our prayers.
    Sharon and Gary

  4. Julie, I hope and pray that you get the medication that you need. I’m glad your doctor is working with you on jumping hurdles.

    Thank you for sharing your journey with us. It’s a honest and selfless look into your life.

    Hugs and prayers

  5. I am so, so sorry you have to go through all this again. Thank you for sharing your journey. My continued thoughts and prayers to you and big hugs.


  6. I admire your desire to fight to the bitter end. I think most people see that your journey is hard but we can never understand how you feel. I know I can see how sick you are and often just don’t know what to say.

    • It’s not so much that I want to look sick. I just don’t get how a person can be this sick, yet function fairly normally. It’s like the world keeps spinning while you’re in this weird sort of limbo.

  7. I just can’t find the words, Julie. Just know we are thinking of you.

  8. Can you try edibles? I had some chocolate bars that were awesome. Granted I was high, but there was no pain. I admire your will and your knowledge of navigating the system. Its f’d up that you have to go in the hospital and treat rather than be prescribed the Samsca as preventative measure. I completely understand and can relate to considering not doing treatment. Its is sad and makes me angry when I read your blog and see what you go through just to get the medicine you need. As you know, Yervoy almost killed me and my only option is waiting to go Stage 4 to see if Keytruda will work. It feels like a death sentence. Keep fighting the good fight. Try an edible chocolate bar. Maybe it would do you good to have a LALA moment for a temporary peaceful moment. Sending you love and hugs and lots of prayers. Vicky

    • They don’t sell edibles here. I guess those LALA moments aren’t considered medicinal, although I bet they’d do a lot more for the pain.

      I pray you never get to Stage 4. But if you do, Keytruda might not be a bad option. My doctor thinks it’s superior to Opdivo/Yervoy in terms of side effects and effectiveness. That also seems to be the case on the lung cancer sites, but it may just be that Opdivo was approved first.

  9. Julie, My heart is breaking for you. I will pray harder. Love, Aunt Betty

  10. Blurt it if you have to. Sometimes we’re too afraid to shock people, when that’s what it will really take for them to halfway understand.

    Love, Kendalynne

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