Friday, July 26, 2013

The Nitty Gritty

I did it! I requested my records from Tulsa Cancer Institute. I've read over them three times already and will read over them many more times! I feel a little more educated about what I've been through the last six months - especially in the beginning.

It all started with an ultrasound on my neck that showed abnormal appearing enlarged lymph nodes. Biopsy was recommended. My surgeon did a needle biopsy that day on the prominent lymph node at my collar bone. The results included the phrase highly worrisome for malignant lymphoma. It's a good thing I didn't see those words until now!!! I'm so thankful that my surgeon didn't tell me exactly what the report said! Dr. Bruns was so kind with what he told us and how he took care of me!

Since the needle biopsy wasn't definitive, I had surgery to remove the lymph node for biopsy. It showed non-Hodgkin lymphoma - diffuse large B cell lymphoma (aggressive), likely arising out of a follicular lymphoma (indolent). I wonder how long I had the follicular lymphoma...

So, all my progress notes show the diagnosis as:

Diffuse large B-cell lymphoma with a component of grade 3 follicular lymphoma, Stage III disease above and below the diaphragm.

I learned that two lymph nodes were removed from under my arm where I thought it was just one. They were not positive for lymphoma, but a component of minimal involvement by follicular lymphoma is not excluded. Again, I wonder how long I had the follicular lymphoma...

Actually, I'm thankful that it progressed to the aggressive lymphoma so I could get treatment. The aggressive lymphoma has a higher rate for cure! Both the large diffuse B-cell and follicular respond well to the targeted monoclonal antibody treatment of Rituxan! Plus I would hate knowing I had the indolent follicular lymphoma where nothing could/would be done until it became aggressive. I did all that waiting without even knowing it!!!

My first PET scan showed the cancerous lymph nodes were from my neck down to my abdomen. If you want the technicalities: Multiple hypermetabolic enlarged lymph nodes are seen involving the lower left neck, superior left mediastinum, periesophageal region of the lower mediastinum, and periarotic and pericaval nodes. It also gave specific measurements and SUV (glow) on the more prominent lymph nodes.

A bone marrow biopsy was also performed while I was knocked out for the lymph node surgery. Thankfully it did not show lymphoma!!! However, it did point out that there is virtual absence of bone marrow storage iron placing this patient at future risk for iron deficiency anemia. Good to know!

And my echocardiogram before starting chemo showed mild-to-moderate mitral valve regurgitation, mild tricuspid regurgitation, and trace pulmonic valvular regurgitation. At least my aortic valve is fine! Goodness!

Oh, the BEST lab result from my pre-op work up was a negative pregnancy test! Woo Hoo!!!

After three rounds of chemo, the CT scan showed encouraging findings:
  • No mediastinal mass or mediastinal lymphadenopathy
  • Previously seen superior mediastinal lymph node is no longer identified
  • Lower periarotic lymph node is decreased from previous exam
  • No retroperitoneal mass or adenopahy is seen

And then after three more rounds of chemo, the PET scan showed "excellent" results. I'm glad and relieved to read Dr. McHam's notes after he talked to the radiologist:

"I discussed the case with the radiologist and he felt like the degree of remaining hypermetabolic activity is not clinically significant showing excellent response to the treatment that was given previously."

So that's the nitty gritty of my medical records for this cancer journey to date. As I read over all the reports, I can't help but notice how many people have been involved in my care. Of course I have my four main doctors - Primary Care, Surgeon, Oncologist, and Oncologist NP. Then you add in all of their medical staff, chemo nurses, surgery staff, those who performed tests/scans/labs, those who interpreted tests/scans/labs, office staff, transcribers, etc. It's a little overwhelming! I'm thankful for all of them! And I'm thankful for those who have researched my disease in order to identify it and find a treatment for it. 

Give thanks to the LORD, call on His name; make known among the nations what He has done.
~ I Chronicles 16:8 

Sunday, July 21, 2013

Sweet Dependence

My mom called today to tell me about a high school friend of mine who is going through her own cancer journey with her husband. My friend and her mom have both told my mom how my blog has helped them. How humbling! I'm so happy to hear that my journey is accomplishing some good. And who would've thought I'd ever have a blog and that people would actually read it! I started out blogging just to keep family and friends updated and found it to be very therapeutic for me. It's icing on the cake that my experiences and words are beneficial to others!

One of the neatest things I've experienced in my cancer journey is a sweet dependence on God. I pray that comes through in my blog posts. How do people survive life without God? It's sad I haven't always had this same dependence when things haven't been as tough. That's one thing I'm determined to change. I want my soul to thirst for God, for the living God (Psalm 42:2). I want to be totally dependent on him - a sweet dependence on my great and mighty God!

I've mentioned before that Christian music has been a huge help in keeping me focused on who God is and what He does. Earlier in this journey I gained strength from songs about God being healer, moving mountains, and how no matter what life brings that we won't be shaken. This morning in church we sang Not For a Moment by Meredith Andrews. Music always makes me emotional, and today was no different. I had tears in my eyes as I sang about how God has not forsaken me and my family. In all our heartache, tears, worry, doubt, tests, surgeries, and treatments, He was there carrying us. He is constant, good, and sovereign. I am so thankful to serve a great and mighty God!

You were reaching through the storm
Walking on the water
Even when I could not see
In the middle of it all
When I thought You were a thousand miles away
Not for a moment did You forsake me
Not for a moment did You forsake me

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me

You were singing in the dark
Whispering Your promise
Even when I could not hear
I was held in Your arms
Carried for a thousand miles to show
Not for a moment did You forsake me

And every step, every breath, You are there
Every tear, every cry, every prayer
In my heart, at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me

Not for a moment will You forsake me

Saturday, July 13, 2013

Be Still and Know...

At this point in my journey, I want to know all the gory details of my biopsies and scans. In the beginning (January 28th), the diagnosis of lymphoma was all the information I could handle. By the next week I could process a few more details - non-Hodgkin lymphoma with two entities that would be treated as one, chemotherapy, and hair loss. At my next appointment, the NP gave me the highlights of my first PET scan - lymph nodes affected down my center from neck to below diaphragm which made it Stage 3. After a couple of chemo treatments, I was brave enough to ask what the two entities were - diffuse large B-cell and follicular. Half-way through treatment, the report from my CT scan specifically focused on a large lymph node in my chest and a large lymph node in my abdomen that were shrinking (among "multiple" others)!

Well, now that I'm done with chemo, I want DETAILS!!! I want to know where all the cancer was and how bad it was. Does that sound crazy? I mentioned to my doctor that I'd like copies of my records because now I was ready to read everything. Of course, I forgot to tell the scheduling gal when I checked out... But, my amazing doctor sent me a copy of the last PET scan report! It has helped me get a picture of what was going on inside of me and how God has blessed me with an EXCELLENT report!

Maybe I don't need to know all the details. In fact, it's probably good I don't know everything. If God takes care of the birds who don't sow, reap, or store away in barns (Matthew 7:25-27), then He'll take care of me even when I don't know it all. If He knows the number of hairs that are growing back on my head (Matthew 10:30), then He also knows how many and which lymph nodes had cancer and how they've responded to treatment. That's good enough for me! 

There's really only one thing I need to know...

Be still, and KNOW that I am God.
~Psalm 46:10a

Wednesday, July 3, 2013

Soli Deo Gloria

To God Be The Glory! I was hoping to use that title in conjunction with announcing that I'm cancer free, but instead I'm using it alone, just for what it says - TO GOD BE THE GLORY. Period. That's what I want to do with this blog and especially what I want to do with my life.

The results of my PET scan were "EXCELLENT" according to my doctor! How can news like that be wonderful and awful at the same time? I'm excited for the excellent report and that my doctor is so pleased with the scan - so much that he didn't order any extra chemo. But I'm also a little down that he didn't declare me cancer free...yet... There were still some lymph nodes that glowed on the scan but not as many, not as bright, and not as big. The intensity of the glow on my first scan before treatment started was 17. Now the intensity is down to 2. Wow!

My doctor was concerned with one thing on the report and wanted to talk to the radiologist who interpreted the scan before making a decision about two more chemo treatments. He said if the radiologist had any doubts, then we'd proceed with chemo. His nurse called me and said the radiologist agreed it was an excellent report, so I'll follow up in three months! No more chemo!!!

I know that's great news, but the selfish baby in me wants to whine that Dr. McHam didn't use the words cancer free, cured, or even remission. I mean, I already bought a lymphoma survivor t-shirt! 

After a tiny pity party, I pulled up my big girl pants and decided I AM a lymphoma survivor because I'm still alive!!! I'm reminding myself of God's goodness and faithfulness and drawing strength from all the verses that have already brought me comfort and hope in this journey. In a weird way I'm glad that I still need to depend on God just like yesterday and the day before. It's too easy for me to become complacent when trials are absent. 

So our journey continues. And we look to God for our strength each day and strive to give Him glory in all things!

Surely God is my salvation; 
I will trust and not be afraid.
The Lord, the Lord, is my strength and my song;
He has become my salvation.
~Isaiah 12:2