What we know & moving forward

I have composed and recomposed this post several times in my head as the reality continues to sink in. Although I am still unsure what to say and how to say it. Although I’d much prefer seeing Alexa Hope’s delight-filled birthday pic at the beginning of the blog, it’s time to say something.

And so, here you go . . .

No need to keep everyone (if there is anyone left) in suspense about our recent trip to MDA. In this case, no news isn’t good news but . . . trust me . . . you didn’t want to read my thoughts Monday or Tuesday or Wednesday. In fact, I’m not entirely sure I am ready to share much of anything yet, but I do feel it is necessary to share what we know so those (who are more emotionally stable and have no idea what is going on) can pray more informed, more persistently and even more boldly. We would definitely appreciate that moving forward.

No, we did not receive the news we wanted or had hoped for on Monday. It was not the news most of you had boldly prayed for and anticipated. My PETscan/CT scan revealed the cancer is growing in my right calf and lungs. Yes, the cancer has spread to my lungs. The place I had asked specifically for us to pray it wouldn’t.

What does that mean? The Votrient (chemo pill) is not working to stop the spread of the cancer or kill it. And so, Dr. Benjamin presented us with three options for future treatment. He caveated each of these (as he always has) with the fact that none of them have any proven success with my disease and all of them will make me more sick.

– One is a very hard-hitting chemo that would require hospitalization.

– Two is taking a combo of the Votrient and one of the IV chemos (Gemzar) I took this summer. Keep in mind both of them didn’t work independently and together I would have even more harmful side effects.

– Three is an experimental treatment in which they inject bacteria into the tumor site in the hopes it jump starts my immune system. This experimental treatment was not created for my particular cancer, it is just another shot in the dark.

We could both tell he wasn’t optimistic about any of these options but he was obligated to offer them to us. We could also tell he was fairly confident they wouldn’t do much good, if any. He said the best thing would probably be for me to go home and think through these options (no rush, of course, because he wasn’t the one with a seemingly unstoppable cancer growing inside him). Anyway, his theory was to go home and enjoy feeling as good as I can for as long as I can. And when I no longer feel good, MDA could treat symptoms as they bothered me. For example, they could remove the tumor in my calf as it continued to grow or they could remove some of the tumor from my lung (removing some of my lung at the same time) if it complicated my breathing, etc . . .

My head was buried in my hands most of this appointment as I shook my head (because I had no desire to pursue any of the harmful/statistically worthless treatments being offered and I understood the implications of this news) while I also tried to unsuccessfully hide the continual stream of tears running down my face. I think I looked Dr. Benjamin in the eye four times during this visit. However, there was a powerfully defining moment when I looked at him and asked a question of clarification about the experimental treatment. He, point blank, looked me in the eyes and said, “There is nothing that will eradicate your disease.” Period.

I don’t know if we asked any more questions after that blanket statement. I was ready to run out of the room because I knew, in my heart, we were done with treatment at MDA. I was angry at Dr. B because I felt like he had been lying to us when Chris had asked almost a year ago “what the goal was of treatment – aiding quality of life left or killing the disease.”  Of course, Dr. B said “killing the disease.” I was mad that little to no money goes to sarcoma research (when’s the last time you attended a “sarcoma walk?”) so there is nothing to offer me that has any success or is even remotely targeted to my disease. I was angry we stayed at MDA as long as did with some stupid pipe dream that medicine was going to work while all it did was made me weaker. And . . . I was angry at God – the One who was allowing all of this hellish mess. My heart was broken, and I was very cynical.

When Dr. B leaned over to hug me, I reached out my right hand, shook his, said thank you and goodbye. As much as I have disliked Dr. Benjamin throughout this process, I will say he was the most “human” at this appointment and he walked out of the room like a puppy with his tailed tucked between his legs because he knew he couldn’t help me. But I also believe he knew that all along.

When the door shut behind him, Chris said, “It is clear God has stripped everything away so that all we can do is trust Him.” He took the words right out of my mouth. We were also on the same page as far as what we felt was next. No more poison . . . We are not willing to try any more treatments without any decent percentage of effectiveness, and I am sure as heck not going to do anything that guarantees I will feel sicker than I have already – and for what – more growing tumors, a weaker body and more disheartening news!? Forget it!!

I am always ready to leave MDA (anyone reading this blog knows that), but on this particular day, I couldn’t escape the ninth floor fast enough. When we got in the car Chris said, “I am so ready to be done with medicine and being told what we can and cannot do.” You may think this strange, but I was too and what he said with a sense of hope instead of despair encouraged my heart as well. For me, MDA symbolized despair – at least my encounters with Dr. Benjamin. I was thankful to see it fading away in my rear-view mirror.

You see, many of you heard about my news on Monday and believed I was given a death sentence. Perhaps I was medically speaking, but even in deep, deep sadness (and a heck of a lot of tears), we have not given up hope the Lord is still very much in this and the hope of a full, complete, God-sized healing on this earth. We just know medicine won’t be the means. And quite honestly, although I desperately wanted medicine to be that means because it would be much easier, I never felt confident it would be. Don’t get me wrong, I am incredibly grateful for medicine and the technology that has helped me throughout this process. I am thankful for my orthopedic surgeon, Dr. Lin. I am thankful for stereotactic radiation and Dr. Brown. I have been continually thankful for scans and the sweet techs who perform them. And, my goodness, I am grateful for Hydrocodone and Celebrex, but I am DONE with poisons that do nothing but harm me. Yes, some medical treatments work for cancer patients. Unfortunately, I am not one of them.

Now – we have our eyes set on healing my body through a more holistic approach of diet, nutrition and exercise. We are focused on feeling good. Because – I don’t want to merely survive . . .  I want to live. We had already adopted some of this lifestyle but we couldn’t go whole hog as MDA didn’t want holistic methods to interfere with their treatment methods. We are considering and praying through some options to see what would be the best fit for me and if I will even be accepted into the programs. We will have a phone interview with a holistic doctor in Tulsa on Monday morning to get his thoughts on the next steps. We are applying to the Gerson Institute in San Diego. We will keep you posted on the next steps of this journey as we know more.

And yes, I realize God is still sovereign over all of this (which is the biggest reason I am still struggling). My theology is pretty pathetic right now. I am still processing and my heart is still broken but I do know God is in control of my course, no matter what. Does that bring me comfort – not right now. But, He is all-powerful. He could heal me this instant without any change in my lifestyle. He could’ve healed me on meds. He can do whatever He pleases, and our prayer would be that He would heal me on this earth so I could spend a long life glorifying Him. At the end of the day, He will do as He pleases (i.e. my results on Monday) but what do we have to lose by asking BIG things from a BIG God? If He is as BIG as we know He is – then why not ask God-sized requests with child-like faith? At this point we know it will only be this BIG God who can miraculously heal me.

Although I am still very sad and I tear up just holding Alexa Hope, I still have a lot of fight in me. Very few of you knew me before I became Kelsey Kennedy. The Lord did a great work in my life to smooth off many of my rough edges. He made me more feminine, less feminist. I chose a career inside the home not out (which shocked so many of you). I changed – a lot (and in good, godly ways). However, this stupid cancer has resurrected many aspects of the ol’ Kels. The gal who was a hard-working, disciplined competitor. The strong-willed girl who took the answer “no” as a challenge. The gal who set her mind to something and saw it through no matter what. Well, that girl is back.

I believe I let medicine instill a lot of fear in me. I put a lot of trust in it. And, I believe it also made me lazy to think I could sit back and let it do all the work. Boy – was I wrong! I am ready to fight because I have to. Because “medical scans” say things look grim, and gracious, that makes me mad, I don’t plan on rolling over and giving-up. If I am going down, I will go down with a fight (and my daughter will see that her mama is not only brave but strong and tenacious). God gave me a strong-will and the stubbornness of a mule – not always a beautiful trait – but it will come in handy now. It is time to tell this filth in me where to go. Medicine couldn’t do it, but I am hopeful that with the persistent, believing prayers of my “warriors,” oodles of encouragement, a holistic approach to healing, a great BIG God, a hope-focused fight and the heart of a warrior – we can destroy the very thing trying to destroy me . . . and only God will get the glory.

I want to send a huge gratitude-filled hug to all of you who have already been on your knees petitioning for God-sized earthly healing, who have sent me encouraging texts, Facebook messages and cards. I realized early on in this battle that I wouldn’t be able to personally respond to all of the messages but I do read them and am encouraged by them. Keep’em coming! I need a lot of cheerleaders heading into this next step because it will be unconventional and require lots of time and incredible discipline. I need you to remind me I am strong and that anything is possible with God. I need reminders to focus on living a long life and fighting not reminders of my diagnosis and its implications (the Enemy reminds me of that every moment of every day and I get very sad). Don’t let me give up, even when I want to!! I love my warriors and God is doing a work in all of us. Yes, I have let Him know I don’t appreciate the means He is using but I am thankful you are in this with me.

On Monday, I thought my world and every dream I ever had was coming to an end. I thought the night had come . . . but perhaps, just maybe, a new day is dawning and hope is rising with it. Will you join me?


(Shar, thank you for this poignant graphic reminder of where our hope & trust needs to be. Ty for the reminder that the strength for this fight does not come from New Age mantras but from the Almighty One.)

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

PRAYER REQUESTS

- Complete healing from cancer and a long life with my family to glorify God
- NO MORE SPREAD! NO MORE GROWTH!
- For total trust in the Father and what He is doing
- For strength in the daily spiritual/physical battle as I am still dealing with continual pain
- For wisdom in the next steps – lots and lots of wisdom
- Encouragement and endurance for my caretakers – esp Chris, my parents & my sis
- For direction, timing and even funding to pursue the next steps.
- For wisdom how to live each moment fully especially with Alexa Hope. Wisdom in how to communicate what is happening.
- I so desire to feel good again so I can exercise (healed herniated discs, clean calf/lungs, no more spread). I have even had my biked tuned up in the hopes I can start cycling again.
- For hope, hope, hope and a strong-will to fight this disease head-on.
- NO MORE FEAR!

***Some very sweet sisters have created a Facebook page called “Praying for Kelsey.” If you would like to be a part of it, simply search for the group and request to be a member.