6 a.m. to 6 p.m.

Yesterday I was up before the sun. Actually, my parents were too as the sun did not come out until we had already started down the road towards Cincinnati. It was a lovely morning though. A few times on 42 South, while sipping my coffee, I thought, “This is like a picture off a postcard.” Then we hit the interstate; at least traffic was flowing well and we made it to Children’s Hospital right on time for my day of appointments.

Yesterday marked three months of being on the chemo treatment, Sirolimus. This chemo requires me to have a follow-up appointment every month with my doctor, where I present them with my log of times I take the medicine every day and other recorded health issues I keep track of during the month. I am still doing well on the drug considering all that has happened over this past month. My main doctor asked me my thoughts on it again–if I thought it was benefiting me and if I wanted to continue. Last month’s check-up was easier to confirm better answers as I had MRI scans to help me clarify that tumors were looking stable and it was a benefit to continue on because of that fact (and also two months was not enough time in my mind for a fair trial of the treatment.)

But yesterday I just honestly said, “I don’t know.” There has been more changes over this past month that have been more consistent: the pressure in my lower spine, the increasing weakness/numbness in my hands, more hearing loss in the right ear, worsening lack of bowel movements. Plus the steroids are making my stomach feel heavy and my balance is worsening. By the time I saw my main doctor around 2:30pm (after the whole team throughout the day otherwise), my brain could no longer function in hard questions. All I could think of was how I am not certain what this next MRI in November will show; it is hard not to wonder. I did decide, however, to continue on the chemo as planned until the MRI on November 5th. I will see my doctor soon after and we will go from that point whether or not to continue the Sirolimus.

Yesterday also included seeing the whole “team” of doctors. I do this every six months. I see my main doctor and his small team that I communicate with via email every week for labs and questions; I see four other specialists for different areas plus my social worker. It gets repetitious to have to talk about my problems to every doctor, but they ask different questions and then take what answers I give them, plus their own observations, and discuss together different concerns and possibilities. I cannot tell you what a privilege it is to be a patient with a team such as this! They truly have my best interests at heart and I know this is true for all their patients…just very humbling at how much they circumference and still take time for each individual. 🙂

Usually these “team” doctor visit days start around 8am or so and we usually get out by 3pm (on good days). But because I have had high blood pressure, a bit of last-minute things were added to my schedule before I could leave. And so by 3pm, I was on my way to the radiology department for my ultrasound/x-ray…and in my fatigue and hurried walk, my right foot hits the floor hard, resulting in tripping and flying to the floor. I was fine, but because I had fallen two days earlier, I reopened a wound on my left knee…which gave me a nice mess this morning as I have still been bleeding (thank you blood thinner pills.) Good news is that I think we got that mishap under control, but it added more time to get out of the hospital yesterday. (A big thank you to my interpreter as she was with me the entire day as well.) We finally found ourselves leaving Cincinnati around 6pm. It did not take me long to fall asleep in the backseat.

Although yesterday was a majority of just talking…as the biggest problem of numbness in my hands and feet they can’t do anything for in relation to medicine and I will never regain that lost sensation…I feel that it was a good day (long), but good. Over the next month, I can pretty much guarantee more changes–whether physical or even to the routine agendas like when to get lab work completed. I can only take it but one day at a time, one step at a time.

P.S. I read this verse earlier in the week; reading it from a different translation made a certain phrase stand out. I emphasized it in bold.

I have been crucified with the Anointed One—I am no longer alive—but the Anointed is living in me; and whatever life I have left in this failing body I live by the faithfulness of God’s Son, the One who loves me and gave His body on the cross for me.

Galatians 2:20, The Voice


Filed under Adjusting to NF2, Hospital Trips

8 responses to “6 a.m. to 6 p.m.

  1. Michelle Wight

    Each day as you persevere, God’s Spirit grows. These temporary bodies show their imperfections daily. Thank Jesus for the life of confidence we can live in Him because, we are familiar with the hope of glory found in Him. Knee wounds are nasty. I am praying for you to have relief from your blood loss. Jesus has already taken care of it I’m sure. I have got screws in my knee that aren’t functioning properly. All these details will get worked out.
    Take Care,
    p.s. I still need to check out Colorado Christian University!

    • mel

      Hi Michelle,

      My wound will still take a few days to get to where it will fully stop bleeding but doing MUCH better! I got it cleaned and keeping tight bandages on it, plus wearing my compression stocking fully (even to bed) for the next few days as the pressure helps stop the bleeding too. It is nothing like screws in the knees though.

      Thanks for the reminder to be thankful of confidence in Jesus. I often forget confidence…

      Have fun web searching CCU. 🙂

  2. My dear Melinda, what a beautiful verse in Galatians! Not only is it perfect for you, but it is also perfect for many of us. Thank you for sharing it. That was such a long day for you. I think about how each doctor asked me the same questions over and over again and how it must have helped them to understand my situation…so thanks for sharing that too. I’m praying for you and love how you are leaning into our Lord. You are a wonderful example to others.

    • mel

      Hi Liz,

      Repetition is not easy, but in our cases, essential. Repetition is funny though…like we repeat what is not essential and don’t have a problem, but if it is important then repeating difficult. :/

      Thanks for sharing about your doctor/questions. Nice to know I am not the only one. 🙂

  3. Megan

    Sis!!!!!!!! Thankful it wasn’t any worse than your knee but will be praying that it heals up nice and quick. Love you sooo much – praying for you as the process of making decisions concerning your health continue on, and more quickly by the sounds of it. XOXO ~ Megs

    • mel

      It is going to take a bit to heal…but I think we have the bleeding all under control. It is probably the worst I have had yet. 😦 But I am doing well…just the bandages tight right around my knee makes walking feel funny sometimes, but it could be worse!

      And the verse…yeah, I think God does that for specific reasons–and for me, it was what I needed before the appointment. 🙂

  4. Megan

    P.S. That’s a wonderful verse! Isn’t it neat when Scripture pops out at ya like that?!

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