Find Me...

Musings from the Quietude

Find me…

Hello Friends and Family,

It’s been a long while since my last update. I sometimes think I am losing myself in the midst of this battle. I may have mentioned before that this is a long treatment plan. When I signed up for this Clinical Trial, I had no doubt that it offered me the best hope at long remission. I still have no doubt about that.

At my October treatment, the PetCT was repeated and it showed continued complete response to the treatment. That is a major praise!! I am so grateful to Dr. Wang, Onyeka and their Team at MD Anderson. In this Trial, I am being treated with 3 drugs. Dr. Wang said he believes in the future, the gold standard for MCL will be 4 drugs. I am still processing that statement somewhere in the recesses of my mind.

Processing…seems like I need a lot of time and space to do that during this journey. And that is why I haven’t written for awhile. Some of my thoughts and observations borne of quietude are listed below in no certain order of importance.

*As most of you know, our Mother lives with me. We have a great team of Caregivers that help a lot. Mother has become very dependent on me. She has lived with me full-time since December of 2020. The layers of how hard this journey has been and continues to be could only be expounded upon in book form. Suffice it to say, It is probably the closest I will ever come to knowing what a Mother must feel like. And now that I am home a lot, undergoing treatment, I think it is also the closest I will ever be to understanding what a stay at home Mom feels like! I often have repeated to myself…Galatians 6:9 “Let us now grow weary of doing good, for in due season we will reap, if we do not give up.” Yes, Lord. I’m working on it.

*Being out of work for a long period of time is decidedly NOT FUN! My profession and the day to day of what I do is very rewarding! I miss the camaraderie. I miss being part of a team. I miss my colleagues and the satisfaction of doing my job well! I miss the patients! Days and weeks run together without the rhythm of Work. It is noble to value work. And, I am feeling the void of its absence.

*My long-term disability policy requires me to file a Social Security Disability Claim. It was a heavy realization to know that the US government considers Mantle Cell Lymphoma part of their criteria to meet their ‘strict definition of medical disability’. I thought surely, I will be denied. I still do not know the answer. But, I do not want to be disabled! I most definitely do not want to be dependent on the Federal government!!! Don’t get me started on that!

*After doing more of a deep-dive into why I am having all this bone pain…I discovered that 1-7% of immunotherapy patients experience intense bone pain. Lucky me. I have found some relief through LDN…an old drug which helps your body produce more endorphins which are the body’s natural pain-killers. It has made the pain more tolerable.

*On the subject of pain…I can understand why people who experience chronic pain feel like they are going crazy! I have experienced only a fraction of what people who experience chronic pain for years suffer on a daily basis. I still hope that this bone pain will resolve once I finish treatment.

*A lot of the above may seem negative or depressing. It is true. It is also true that I am learning to find joy in more little things. Some of my favorites lately…playing ball with my teeny, tiny Poppins, unhurried hellos and goodbyes, cooking when I feel good, finding humor in the hard times, being available and undistracted when people need me, cleaning out some small areas of junk in my house, hurrying outside to see a beautiful sunset off the back deck…and then hurrying to the front porch to see what it looks like on the other side of the house!

*Actually embracing a lot of both/ands…here is the biggest one for me right now…life can be both very hard and very good all at the same time! Why? Well, in a nutshell, because God is good all the time.

As I finish this post, I’m sitting in the hotel room in Houston. My dear friend Katherine is with me. Tomorrow is a big day! In addition to the usual rigors of treatment day, the bone marrow aspiration/biopsy is being repeated. I am definitely not looking forward to that! I have been dreading it ever since I had the first one done! I was sore for 2 weeks and the procedure itself was unpleasant. Please pray that it goes smoothly and that they find no presence of lymphoma cells in my bone marrow.

Lastly, I keep using the phrase “Find Me”. Our worship team at Church of the Apostles stunned my heart and opened the floodgate of tears to flow during the service a few weeks ago when they played this deeply touching song. Amy Miller, the writer of the song explained how it was a prayer of her heart as she was studying the story of Mary and Martha in the Bible. Oh how it touched my heart. No matter what happens to me in this life, the words of this song are the deepest cry of my heart before a Holy God Who is nearer to me than my very breath. I will try to include the link so you can hear the beauty. I am still learning Substack! Lyrics below…

Many Blessings to you all!

Lora Lee

Find Me

Aimee Miller/Apostles Worship

I don’t wanna run away when you call me

I don’t wanna grieve your Spirit inside

I don’t wanna make my home in the valley

I don’t wanna miss the search of your eyes

Chorus:

When you find me

Would you find me on my knees

When you search me

Would my heart be at your feet

‘Cause I don’t wanna be found

Doing useless things…

Find me hoping, Find me praying

Find me fervent in the waiting

My eyes open

My heart burning and alive

Verse 2

I don’t wanna drown in an ocean of luxury

I don’t wanna build my house on the sand

I just wanna live my life for your glory

I don’t wanna lose myself in my plans

Bridge:

Find me…with a faith to move the mountains

Find me…with a heart of sacrifice

Find me…singing in the valley

Find me…willing and able, steadfast and faithful

Drawing from the Well that won’t run dry

Chorus repeat