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
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
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
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
I had my PET scan after finishing my scheduled chemo treatments to see if the lymphoma is gone. I was far less nervous this time than with my first PET scan. I listened to one of the Passion albums while waiting for the radioactive stuff to go through my body. I had a comfy recliner and a warm blanket in a dark and quiet room for about 45 minutes. During the actual PET scan I just closed my eyes and starting praising God for all the wonderful things He's done during this journey - my own spiritual growth, support from family and friends, great doctors and nurses, minimal side effects, safety in all of our travel back and forth to Tulsa, insurance coverage, etc, etc, etc. It was a great time to be totally focused on God. I may have dozed a little bit, too!
I've been thinking about the results of the PET scan while we wait for my doctor's appointment. Obviously, we're praying it's totally CLEAR. But what if it's not??? Thankfully, God is God, God is good, and God is faithful no matter what we find out from the scan results. I love that there are so many songs that remind us of God's goodness and faithfulness, and I'm thankful for Christian radio stations like KLOVE. There are so many great artists writing and singing great songs that can make me lift up my hands in praise, shed a tear, or sometimes both at the same time! I've noticed that through my lymphoma journey, many songs have taken on a whole new meaning. I don't know if I'm really hearing the words for the first time or if they are just more fitting now - probably both!
One song that has touched me is "Even If" by Kutless. The words are hard to sing when praying for healing, because what if the healing doesn't come? My prayer is to be able to sing the words to this song with all sincerity regardless of the results of my PET scan!
Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
Lord we know your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing your praise
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
Just six months ago we were nervous about all the "firsts" we were experiencing - diagnosis of lymphoma, appointments, scans, chemo, side-effects. This week I'm thinking about the "lasts" of some of those experiences.
The last R-CHOP chemo treatment - Aloxi, Decadron, Benadryl (knocks me out), Adriamycin (makes me pee red), Vincristine (neuralgia), Cytoxan, and Rituxan (made from mouse components).
The last time trying to maneuver the IV with me to the bathroom while being doped up on Benadryl. I saw a neat video of a chemo patient riding the IV across the room, but I would've ended up on the floor if I had tried that!
The last of tummy issues - tummy ache, bloating, gas, burping (like you wouldn't believe), constipation.
The last dose of Prednisone and the nasty, nasty taste it leaves in my mouth. Did I mention the nasty taste???
The last of feeling drained - looking forward to more energy and motivation.
The last of losing eyelashes - mascara only does so much.
The last of not shaving - oh wait, I don't want that to change!
The last of being bald. Even though I probably dreaded this the most, it has turned out to be kind of fun. I like my sassy wig that is soooo easy to maintain. I'm also a pro at tying a cute bandana on my head. And I can take a shower in 59 seconds! (Yes, the kids timed me one night.)
I don't think my hair would've completely fallen out since I always shaved some stubble, but it definitely showed signs of thinning. I'm glad we shaved it all off and had some fun. It cracks me up that my blog post about shaving my head is the most visited post (here)!
One side-effect I want to keep is the chemo-induced menopause I seem to be experiencing. I sure don't want to go through these hot flashes again down the road. Usually I look at my age as on the young side, but I hope I'm old enough that this will be permanent!
Although I won't miss these "lasts" - in all reality, they haven't been that bad. One of my constant phrases through all of this has been, it's all good because I'M NOT PUKING! I've been able to work every day that I haven't had appointments. I've been able to do the necessities for my family (thanks to Daryl being the chef). I've pretty much been able to live life as usual. I am the first to admit I am truly blessed - even if some the blessings have been in disguise!!!
'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
~ Laura Story, "Blessings"
Yesterday was my 6th and final scheduled chemotherapy treatment. WOO HOO!!! It went as well as always! Tulsa Cancer Institute has several campuses in the Tulsa area and are finishing a new state of the art building to combine all the facilities into one. The campus I usually go to is the first to be in the new building this week. The treatment area is so nice with actual sections for each patient instead of a circle of recliners with no defined space.
After my last round of chemo, I needed a Neulasta shot to boost my neutrophils (part of white blood cells) that had dropped to 1.1. Yesterday my count was 4!!! That's higher than after my first chemo of 2.4! So as I was checking out, the scheduler said she'd see me back the next day for an injection. I told her nothing was said about a Neulasta shot, my counts were up, and this was my last chemo. She tried to call my Nurse Practioner who I had seen but was only able to reach my oncologist's main nurse. I ended up on the phone with her (new building is big with multiple floors), and she was very adamant that I come in for the shot. After some discussion, she finally went to ask the NP, came back and said we could skip it. Of course she went on to lecture me that I better call back if I start running a fever, even if it's in the middle of the night. Okie dokie! I know she was just doing her job, but all patients do not fit into a procedural mold. Gotta stick up for my rights!
After the Neulasta shot three weeks ago, I had a couple of days of hip pain, felt crummy, and slept a lot. That's fine if I really NEED the shot, but if I don't, why go through it? It would also be another day off work and drive to Tulsa - not to mention the cost of the shot (thankfully to insurance and not to me). Now I'll be praying I won't run a fever and have to call the nurse - HA!
I thought I was going to have to call the nurse last week. Allergies or a cold hit me with a sore throat, head full of snot, stuffy AND runny nose, sinus pressure, and cough. One day I felt awful and ran a temp from 99.9 - 100.4 all day. The magic number to call the nurse is 100.5, so I never called. I took Tylenol PM that night and woke up fever free! Now if I could get rid of all the snot!
So I'm waiting for my PET scan to be scheduled, and then I'll see my oncologist after that to go over the results and talk about how they'll monitor me. It's been almost six months since my mom noticed the swollen lymph node at my collarbone. This journey will continue, but I'm grateful it will be a different kind of journey after my next appointment. And I am so thankful that I won't be on any part of this journey alone - family, friends, and most importantly GOD are traveling with me!!!
Have I not commanded you? Be strong and courageous. Do not be afraid; do
not be discouraged, for the Lord your God will be with you wherever you
go.
~ Joshua 1:9
