Follicular Lymphoma

My final biopsy was successful and provided the information my doctors needed in order to subtype my Lymphoma. I have Follicular Lymphoma – a type of Non-Hodgkin’s Lymphoma.

There are many subtypes of Non-Hodgkin’s Lymphoma, each of which fall into one of two classifications: Aggressive (fast growing) or Indolent (slow growing) – these categories characterize how the disease is progressing. My Lymphoma (Follicular) is Indolent, a slow growing cancer.

It seems counter-intuitive, but we have been hoping for the aggressive, fast growing kind all along because the probability of cure is much higher. The Leukemia & Lymphoma Society website says it like this: “Some patients with fast-growing NHL can be cured. For patients with slow-growing NHL, treatment may keep the disease in check for many years.” The language I’ve heard often is that my form of cancer is “treatable but not curable”, my doctor says it all depends on how the word cure is defined. My cancer will be treated soon, with the goal of going into remission for a long period of time where I wouldn’t be bothered or experience symptoms of the cancer. But there will always be a risk of it flaring up / coming back, in which case I would be treated again – and then repeat again.

If you’re wondering… YES – it has been a pretty big pill to swallow.

S T I L L   D O N ’ T   K N O W :

My treatment plan & what’s next. I will meet with my doctor early next week to discuss & make decisions about my next steps. Leading up to this week, I had been mentally preparing to take Chemotherapy throughout the Fall, but that will likely change with the new updates. It’s more likely I will take a form of Immunotherapy combined with Radiation, but that will be more certain next week.

P O S I T I V E S :

  • The treatment will be less severe than I was expecting – it will be less toxic, for a shorter period of time, and much better side effects.
  • I will hopefully get to be more present in my job at Salt Company this Fall than I was previously expecting.
  • I imagine that with any ‘cure’ of cancer, you would still live with the suspicion of it coming back or something else developing some day. Mentally I will be aware of the risk of it’s return, but the ongoing treatment I would need would be much easier on my body each time.

H O W   Y O U   C A N   P R A Y   F O R  M E :

  • Perseverance. It’s really hard having cancer. It’s now been over a month without the whole picture – it would be an understatement to say I’m ready to face what’s in my body. But God has known the whole time – pray that I would persevere and God would give me endurance!
  • Wisdom. I have some options next week – would you pray that God would give me peace, clarity of mind, make me decisive, & help me to actually understand everything?
  • My Biopsy Wound. I just finished week 1 of crutches & I think the wound from surgery is doing well. The swelling is going down and the pain pills have managed the pain a ton. I have a follow-up appointment this coming Wednesday, where they will remove the bandage, take a look, & reassess my need for crutches. If you could pray for no more crutches – both now and for the rest of my life – that would be amazing!

But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love. (Psalm 59:16-17)

Resources

First off, I’m so humbled by how many people have been reading my blog – it’s so encouraging, but also pretty intimidating! For those of you who don’t know me, there’s a lot of things I love about my job at Cornerstone – being on the stage holding a microphone is not one of them. I’ve been forced to grab the mic plenty of times, but this time feels different. I’m in the spotlight, but I’m not on the stage… it’s like the mic is traveling with me { which is just as intimidating }. God knows – my biggest prayer is that as people watch me suffer, I would honor Him & He would be made famous. It’s also daunting to know that every set of eyes that reads these posts is either currently hurting or will most certainly suffer & face life-altering trials in the days ahead, probably sooner than they think.

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Someone recently asked if there were any books I was reading or resources I’d recommend on the subject of suffering. Yes & YES. I read this book a couple of years ago when a student in Salt Company passed away – it was SO helpful at that time to shape my theology of suffering & to face the reality that it was inevitable I would suffer but that I could trust God in the midst of it. It gave me hope and impacted me deeply. As I picked it up a couple of weeks ago, it has again been like a lifeline to me – I couldn’t recommend it more highly! Please, do yourself a favor and purchase it right now! I would share a couple of my favorite quotes, but I’ve basically underlined the whole thing, so that seems like too much work at this point.

> > Walking with God through Pain and Suffering by Tim Keller < <

The second thing God’s used that I want to share is this little video Matt Chandler recorded years ago before surgery to remove a brain tumor. A friend had told me about this video when I shared about my Melanoma scare the week prior, but God brought it to mind in the middle of the night, my first night in Iowa City. People who know me know that I usually have zero problems with sleep, but this night was different. I just laid there wide awake for hours, with tears streaming down my cheeks as I kept clicking replay again & again.

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I FEEL THIS… a hundred times over. My life feels SO blessed, like all God’s ever given to me is good. I know that’s an overstatement, but I really do feel like He’s had favor on me and richly blessed me. So I’ve been able to make much of Him in my life from the mountain tops, but now I have the privilege of singing His praises & declaring that He’s enough for me deep down in the valley.

“There’s a part of me that’s so grateful that the Lord counted me worthy of this.”

Recovery { & a little more waiting }

FullSizeRender6Lord willing, I had my final biopsy yesterday, which means today I’m on the couch! The doctor said that surgery went well and the samples they extracted of the tumor were almost definitely pristine. The samples were sent to pathology Friday and the results should be back around the middle of next week.

The recovery from this biopsy is more intense than my previous procedures — I will be on crutches for at least 2 weeks, bearing little to no weight on my left leg. I’m also on strong pain pills to manage the pain, so no driving until I’m off those.

I’ve felt so loved by many requests of people asking how they can help & what they can do – seriously, thank you so much! My family and a handful of friends have been taking care of me really well, so my physical needs are pretty minimal right now. But if you’re interested in helping out in some way, gift cards are probably the most practical thing that helps right now — Amazon, Walmart / Target, or Casey’s / Kum & Go { lots of gas between here & IC lately! }. OR fresh flowers & candles — they’ve been doing wonders for making my time on the couch more enjoyable!

You can send anything to Cornerstone Church and I’ll get it soon after –
[ Cornerstone Church –  56829 US Highway 30, Ames, IA 50010 ]


W H A T ‘ S   N E X T   /   How you can pray:

  • The results of this biopsy are projected to be back by the middle of next week. You can pray that the results come with a full diagnosis of the Lymphoma. After the full diagnosis, my treatment plan will be coming soon after, so you can also pray that God would lead my doctor to exactly the right treatment that will cure the cancer!
  • A quick recovery from this current surgery — the bone was under a lot of stress in the procedure, so there is risk of a fracture {why I can’t walk / bear weight on it} and a lot of pain. Pray that the bone would heal quickly & recover without any further complications. You can also pray for the little things that come with recovery – that I would sleep well at night, do okay on the crutches, & that the pain would be minimal.

Update: My Next Biopsy

Yesterday was spent in & out of appointments in Iowa City — no answers but lots of information. I met with the doctor who will oversee my next biopsy, which is scheduled for this Friday, July 7 (time TBD).

In efforts to subtype the Lymphoma, I’ve had 3 biopsies so far: 1 bone marrow biopsy & 2 CT guided needle biopsies. The bone marrow biopsy showed no cancer in my bone marrow, which means the Lymphoma is localized in a tumor in my distal femur. Both of the needle biopsies were not able to extract the right samples so they failed (most likely, the process of getting the bone through the needle was damaging the tissue before it got to pathology). The next & final option is an open biopsy, which is scheduled for Friday.

Different from the rest, the open biopsy on Friday will be performed in the operating room by an orthopedic surgeon under general anesthesia. He will make an incision, a hole in the bone, & then surgically remove a piece of cancerous bone to send to pathology. Because of the stress that causes to the bone, I won’t be able to bear any weight on my leg for at least 2 weeks… so I’ll be hobbling along for a while.

Although it’s a pain in the butt to have to go through another procedure & add additional waiting time to finding out the full diagnosis, here’s the silver lining I have to keep reminding myself: it’s been so difficult for the doctors to biopsy because the cancer hasn’t spread. Bone is really difficult to biopsy in general, but usually in cases like mine, they would only try 1 needle biopsy and if that failed, there would be somewhere else in the body where the cancer had spread that they could biopsy instead. That’s not the case for me – the only option they have is my femur { PRAISE! }. 


H O W   Y O U   C A N   P R A Y :

  • Surgery on Friday, July 7 (time TBD) — Pray the surgeon would get exactly the right samples to the pathology department, which would lead us to the full diagnosis! Praying for clear, definitive, & QUICK results!
  • Patience — it’s starting to feel like an eternity since they first told me I had Lymphoma. I’ve felt more discouragement recently in the waiting. Also the anticipation / anxiety of what my treatment will be & how it will affect my body is growing! God’s definitely stretching & growing my patience.
  • That God would just heal it Himself before we even get the full diagnosis!

H a p p y   4 t h   o f   J u l y ! ! 

What Led to the MRI?

Melanoma led to the MRI.

On May 4 of this year, I was out celebrating Lisa Warren & Kristen Rodgers’ birthdays. As people were getting to know Lisa, she shared details about her husband Rob’s skin cancer that I hadn’t heard before. My stomach was on the ground as I remembered noticing a mole on my shin a couple weeks prior & had thought to myself, “that looks weird, I should probably go to the dermatologist soon”. I cried driving home from The Cafe that night – something inside of me just knew that there was cancer on my body.

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I called the next day, scheduled an appointment, got the mole removed, & when my pathology report came back on May 18, my dermatologist confirmed my suspicions & delivered the news: there was Melanoma in a mole on my left shin.

I was shocked to hear both my name & the word cancer in the same sentence. But moments later, she was able to tell me the Melanoma was at stage zero & in situ, which means it was sitting on the surface of my skin / growing outward. Surgery was already scheduled for June 2, where a surgeon would remove a larger portion of the area around the spot to ensure all the cancer was removed.

On Tuesday, June 6, I got the call that surgery was successful and no additional Melanoma was found in the pathology report { PRAISE! }. So because I was on way to reaching my insurance deductible, I decided it was finally time to figure out what was happening in my knee. An MRI was scheduled the same week (Friday, June 9) which sent me to Iowa City & here we are now. 

G O O D   N E W S — doctors have confirmed that the Melanoma & Lymphoma are unrelated which 1) is super strange that I had two types of cancer happening simultaneously, but 2) is VERY good news because in my doctor’s own words, “that would have been the worst case scenario”.

When I first heard there was something strange on my MRI & that I would be sent to see a specialist in Iowa City, I hung up the phone & said to one of my staff girls in my office: “I think I have cancer… like, the real kind. I think my Melanoma was just the practice round.”

It’s almost freaky looking back at the timing of everything, but God knew that I would need to learn a couple lessons & hear a couple promises from Him that He would use to sustain me in He knew was to come: 

  1. MY LIFE & MY BODY ARE COMPLETELY AT HIS MERCY – they always have been and they always will be. In Walking with God through Pain & Suffering, Tim Keller writes, “When pain & suffering come upon us, we finally see not only that we are not in control of our lives but that we never were.” YES & yes. God hasn’t given me cancer but He certainly supervises my circumstances. I am completely at His mercy and at the top of His priorities is: ‘how can I shape Kendra into a person who looks, acts, & has a heart that’s more like my Son Jesus’ – NOT – ‘what can I do to make her life easy, comfortable, & free from suffering’. He loves me too much for option 2 & loves me so much as to allow option 1. 

“ Endure suffering as discipline: God is dealing with you as sons…. No discipline seems enjoyable at the time, but painful. Later on, however, it yields the peaceful fruit of righteousness to those who have been trained by it.”  Hebrews 12:7,11

  1. A LIFE OF SUFFERING IS EXACTLY WHAT I SIGNED UP FOR when I chose to follow Jesus. I wrote this somewhere else already, but He’s like screaming it in my ears these days — Jesus faced the ultimate suffering & separation from God 2,000 years ago so that when I said YES to following Him, I would only ever face temporary suffering (while here on earth; spared from eternal suffering separated from God forever). The goal of every follower is to become like their leader; the goal of a disciple is to become like their master. I want to be more like Jesus. Through my time in the Bible the last couple weeks, God’s been showing me a bloody Jesus – One who was touched by the sin & evil in this world, One who can sympathize with MY pain & suffering (Hebrews 4:14-16), and One who has promised to be present with me inside of it.

“The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs — heirs of God & fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him. For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”  Romans 8:16-18

His timing is perfect. Even if I don’t understand or like it… it’s perfect.


W H A T ’ S   N E X T  concerning the Melanoma: visits to the dermatologist every 3 months for check-ups and no more sun… which felt like such a huge sacrifice a month ago, but doesn’t even matter now { my, how God has refined me already! }.

FullSizeRender 5This photo is from my journal the day before surgery… He’s definitely answering that prayer! 

Preliminary Diagnosis

This is not the way I thought my summer would go. I had a list of things I wanted to enjoy, people I wanted to see, & books I wanted to read. I had pictured myself relaxing at the pool, biking to the farmers market, & reading in my hammock. Instead, I’ve sat in hospital waiting rooms, spent time looking out the passenger window of my mom’s van, and talked on the phone with plenty of insurance reps.

On June 14, 2017 I was diagnosed with Lymphoma. Since April 2016, I’ve been experiencing pain & swelling in my left knee that has come & gone every couple of months. I thought all along that it was connected to exercise… that I had bad form or was doing something to irritate the knee. Because I felt confident I didn’t tear something, I opted out of paying for an MRI last fall and instead my game plan has been to just take a week off of working out until the swelling goes away and then continue on as normal.

I had an MRI in Ames on June 9 in hopes of finally figuring out what was going on with my knee. When my doctor saw the results Sunday night, it showed that nothing was torn but that there was something happening in my bone. I was sent to see a specialist in Iowa City first thing Monday morning — after lots of scans, tests, & a biopsy at the University of Iowa Hospital, the earliest reports of the biopsy confirmed the suspicion of cancer and it already had a name: Lymphoma.

Lymphoma is an umbrella term of cancer – underneath that umbrella are a variety of possible subtypes that we need to know in order to fully diagnose the cancer and understand what it is doing in my body. Since June 14, my doctors have been unable to further subtype and provide a full diagnosis my cancer. I’ve had 3 biopsies already and we continue to plead with God to give my doctors clarity as to what is currently residing in my body. Therefore because we don’t know what type of Lymphoma it is, we also don’t know my prognosis or my treatment plan moving forward.

As you can imagine, the past 3 weeks have been overwhelming – I’ve probably experienced every emotion available to mankind. My heart is more broken, but also more full of faith than ever before. I’ve cried more tears, but also prayed more honest prayers in the last 3 weeks than ever before. I feel overwhelmed with love and support by my friends & family already and I covet your prayers also!!

To be honest, my flesh wants to crawl into a hole and come out in a couple of years when everything’s ‘better’ and life can be ‘normal’ again – but that’s not real life. This is my new normal. Also, it’s selfish & naive to think that I’m the only one suffering in a scenario like this. My friends & family who know and love me will also suffer to various degrees during this season, and being aware of what’s happening & how you can pray can be a way to walk with me through this. This blog exists to let people in, without being on my phone 24/7 giving individual updates {insert vomiting face emoji}. I want to be open and honest about the fears, the joys, and realities of walking with God through suffering and fighting this evil & scary disease we call cancer.

W H A T ‘ S   N E X T   /   How you can pray:

  • Monday, July 3 – I will meet with a new doctor, who will oversee my next bone biopsy – you can pray that this biopsy would send exactly the right tissue to the pathology dept., which would lead us to the full diagnosis!
  • MY DOCTOR – Would you pray for my doctor – that God would give him wisdom, discernment, and give clarity as he works on my case? If it would honor Jesus & bring Him the most glory, I’m praying God would heal me in front of my Pakistani doctor. I’d love him to meet Jesus because I had to be his patient {big prayers, y’all}. But if not – pray that I would suffer well and show him Jesus in that way.
  • MY FAMILY – As you can imagine, they’re heartbroken. Would you pray God would be near, comfort, & meet their needs as they have to watch me go through this up close?
  • MYSELF – Would you pray that God would give me courage to continue to face the days ahead with strength, honesty, and perseverance? In general, I’m doing well. God is sustaining me and giving me exactly what I need, right when I need it. I currently don’t feel the effects of the cancer & am fully functioning, so I don’t have a lot of physical needs right now – the best thing you can do is pray!

{ I will update kendragustafson.com when I receive new information or have an update on what’s next. You can sign up to ‘follow’ this blog by inserting your email address in the sidebar to the right. By doing this, you’ll be notified of new post immediately via email. }