The Latest

Y’all! I have waited too long to update the blog (6 family Christmases later… I have a BIG family), so I’ll spare you a novel and just give you the quick rundown. We’ve had a few hiccups the past few weeks and a few new prayer requests, but overall things are still looking very positive! I am still so very excited and grateful that the treatment is working. It makes all the inconvenience of travel, the pain of the infusion and the side effects SO MUCH EASIER to endure. I’m just so very, very thankful.

Here’s the latest…

MRI This Week:
I’ll be getting an MRI of my spine this week to see if there is any possible nerve damage. I’ve had an issue with my toes going numb, and it’s become more frequent over the past week. Dr. Sullivan wants to rule out any issues with my spinal cord so we are starting there and will find out this week. This is a phase 1 trial, and has only been going on for 6 months, so side effects and long-term issues due to the treatment is still relatively unknown. When out-of-the-ordinary side effects surface, like numb toes, we just have to go through the process of elimination to determine the source.

What’s Going on with Treatment:
I’m two rounds into cycle two and only two more infusions to go before I complete cycle 2 and get my next scan. Yay! My infusions are still going well. I did have a mild allergic reaction during my December 15th infusion, but a few benadryls later and I was good as new. I do have a new prayer request related to my infusions though– my veins are not being cooperative, and my nurse is having trouble finding a vein where he can advance a catheter enough to give me the infusion. Trying to find a good vein is fairly unpleasant. It means multiple needle sticks and some working with the catheter in my arm, which causes some intense burning.

Because I get frequent bloodwork and an infusion every other week, my veins have developed scar tissue that blocks the catheter. I am not a candidate for a port, because melanoma patients are at high risk for blood clots, so we have no other options than to whip my veins into shape and beat them into submission! Would y’all please pray my veins will hold up?

Next Scans and Next Steps:
Dr. Sullivan was so excited about my December scans, as were the nurses and nurse practitioners. Good news travels fast, and I have had so many people come up to me in the hospital with a congratulatory hug or a high five. Let me digress for a moment to say how incredibly grateful we are for Mass General and their amazing staff. The level of care I have received is nothing short of spectacular, and it feels like my doctors and nurses are family now. Y'all I just LOVE THEM. They are an answer to prayer.

Anyway, I asked Dr. S what would happen if my tumors completely disappear after another cycle or two. The treatment schedule for this trial is for 24 months, so technically I have 46 treatments to go. BUT, he said that if I’m a complete responder, he is going to talk to the trial sponsor about letting me leave the trial early. YAY! There is no protocol for complete responders yet, but Lord willing, I plan to be the first of many. ;) How amazing would that be?!

How I’m Feeling:
Not great, but not bedridden, so that's a win! As treatment has progressed, my fatigue has increased, and I just feel crummy overall. Nausea sneaks up on me off and on every day, but it's totally manageable.

I’m learning my limits and coming to terms with the fact that I just cannot do everything I used to do. There is simply not enough energy in my reserve. But. I have no complaints. These are all VERY minor discomforts and it could be so much worse.

I remind myself daily that this is just a season. I won’t always be in treatment, and I believe there is a day coming when I will feel so much better, dare I say NORMAL again!

But for now, it’s time for battle. I am so grateful for you, my prayer warriors and friends, for fighting with me. Thank you for continuing to hold me up in prayer, encourage me with your words, cards, and messages, and for finding ways to love us.

I’ll close with a passage that really spoke to me over the course of a rough past week. I hope it will encourage you too!

Psalm 40
1 I waited patiently for the Lord;
he turned to me and heard my cry.
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the Lord
and put their trust in him.
4 Blessed is the one
who trusts in the Lord,
who does not look to the proud,
to those who turn aside to false gods.
5 Many, Lord my God,
are the wonders you have done,
the things you planned for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.
6 Sacrifice and offering you did not desire—
but my ears you have opened[c]—
burnt offerings and sin offerings[d] you did not require.
7 Then I said, “Here I am, I have come—
it is written about me in the scroll.[e]
8 I desire to do your will, my God;
your law is within my heart.”
9 I proclaim your saving acts in the great assembly;
I do not seal my lips, Lord,
as you know.
10 I do not hide your righteousness in my heart;
I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness
from the great assembly.
11 Do not withhold your mercy from me, Lord;
may your love and faithfulness always protect me.
12 For troubles without number surround me;
my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
and my heart fails within me.
13 Be pleased to save me, Lord;
come quickly, Lord, to help me.
14 May all who want to take my life
be put to shame and confusion;
may all who desire my ruin
be turned back in disgrace.
15 May those who say to me, “Aha! Aha!”
be appalled at their own shame.
16 But may all who seek you
rejoice and be glad in you;
may those who long for your saving help always say,
“The Lord is great!”
17 But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;
you are my God, do not delay.