Ding! Ding! Chemo Round 3

A little catch-up first

  • While I was going through my second round of chemo, which was a doubled dose version, the nausea was stronger as well the feeling of weakness. It was still very manageable though.
  • Belmont had her surgery and has since had all her stitches removed. She’s doing okay, although she’s supposed to take anti-histamines for life to help prevent the growth of mast cell tumors.
  • Got a sweet hair tattoo shaver and had been working on some designs (which were pretty bad).

During the past month Alex was doing some investigating on the differences between the Davis Center where I was seeing my docs and the UF Health Cancer Center which is right down the street from it. There was no clarity to be found through the websites, and of course the doctors never discussed with us the differences and why we might want to choose one over the other. Luckily Alex works in the communications realm at UF Health, and she asked some colleagues what the differences were, since there didn’t see any public information about them. The differences were explained (a normal patient would never know), and her colleagues went as far to find a specialist outside the Davis Center that we have now started to see. I’m very thankful for that intervention, but it still highlights glaring problems with patient communications, all the way from content on their websites down to how doctors communication to you. One day we may end up moving over to Mayo Clinic in Jax…UF Health is walking on a tight rope with us at this point.

With the help from Alex’s colleagues I met with a new neuro-oncologist who specializes in the kind of cancer I have. He spent a good amount of time explaining things to me and before me asking questions he had answered them. Main points:

  • He said I should think in terms of year(s) not months. This was said with a straight face and very quickly so it took a little bit to sink in. This is obviously the best news and most optimistic I’ve received from a doc.
  • Apparently the 3rd round of chemo I was going to be getting was not enough for my condition. So that was caught and I’m now taking even more chemo. Yummy!
  • My original docs said I’d get scanned every 6 months for tumors which I was very worried about since they said the tumor they removed looked like it had grown in just 2 months. Most hospitals that treat Glioblastoma run scans every 2 months, and the doc just stated that he’d want scans every two months.
  • UF in the near future will be running some studies on Glioblastoma, but there’s not enough info to know when and if I’d even be able to apply.

So at this moment I’m on my 3rd day out of 5 for the month taking this increased chemo. I’m feeling much more nauseous this time and am feeling like eating just about one meal a day. Thinking about drinking water is even making me feel sick, which isn’t good for my GI probs. I’ve been told that the meds for nausea that I’m taking are some of the best, but if that’s so I’m unhappy it and will be exploring other alternatives. How much I’ve been sleeping has also increased while taking this stuff. I’ve been sleeping almost to 4pm on some days.

 

13 Comments

  1. Jessi and Mama(June) Mattie too

    Hey, I’ll try to make this short. First, bravo Alex for searching till you found someone who sounds like they know what they are doing. It is hard, they give you hope one moment and then the next tell you something else. I had what felt like the longest appointment yesterday, she began with telling me the not so good news, and my blood work was so she wants to do it again, which means getting up at 3am to be at Quest at 6am. She said I am too , sick and weak to even think of moving forward. But then gave me hope and now I am a basket of emotions. We have been down this road, and it led tdisappointment. I just feel this “Mini Me” doctor has made me her “project” but doesn’t have alot of experience. I have gone down on my steroids making me feel much like what you said, I work myself up with nausea meds all day to eat one meal, and the fatigue makes me just so tired I have had days I can’t wake till 4pm. All to be “expected” says my PA. In other words I may feel like I’m dying in order to maybe live. You are such trooper, I know on days I sleep I feel I’m missing so much I want to do, but also know if I do my body must need it so it can “heal” so I try to think of it that way. As for nausea, it sucks and I am on the max, wish they’d think of pot as a possiblity. Just know I love you and Alex and think of you both everyday, Mom sends her love.
    Hang in there,
    Love and Prayers,
    Always and Forever,
    Jessi

  2. Some things that helped me:
    Ice chips
    Natural applesauce
    Chicken broth
    Dry toast & mild tea
    Mashed potatoes & a bit of gravy

    And by all means, if you need more fluid go to the clinic and get IV fluids…it will make you feel so much better. They can also add a bit of Benadryl to the mix. Go every day you need it. It will really help you, I promise.
    You must stay hydrated. You can do this (just look the other way and go to your happy place) Once you get tanked up with fluids, small bites of food and sips of water… will be much easier to tolerate and nausea will ease up.

    Rest as much as you need it. I hope you are blessed with sweet dreams.

    Chemo is not for sissies. Stay strong!

    All my love

  3. Andrew

    That’s awesome news! Your current round of chemo is 5 days long? Is this 5 days every month? How long after the 5 days do you feel crummy?

  4. Mom

    Sandra has a good suggestion about IV fluids if the doc will work with you to go to clinic. I know you would’nt like it at first but would help your body all the way around. Also in agreement with any form of potatoes. High in minerals!
    I hope your rebound from chemo comes quickly. Love you, Mom

  5. Jessi and Mama(June) Mattie too

    PS. If you can’t follow this post, and I mean this in the best way possible, it’s not your brain tumor!!! 🙂 Mashed potatos are a must have, I go for Idaho, Golden Select, just four minutes in the microwave, lol, wonder if they have those yummy minerals! You think I’m crazy, “crazy doesn’t skip generations in my family” lol. All our love!!!!
    Hange in there and since you turn 34yr old on my “due date” let me know what it’s like. Love ya and thinking of you everyday, give Alex our love!!!
    Love and Prayers,
    Jessi, Mama and Mattie too!!!

  6. Daniel Wood

    Good to hear you got a new Doctor. I work in a hospital and see it all the time that Doctors look at patients like numbers and not individuals, so I’m glad you got a specialist. It was great seeing you guys the other night, we’ll have to go shooting sometime soon.

  7. Mom

    You gave me a big smile at the end! Maybe we can have a red suit made up for you. You would look really “CUTE”😳😀😀

Leave a Reply

Your email address will not be published. Required fields are marked *