Just When You Think It Can’t Possibly Get Worse…

I was awakened this morning at 5:45am by my husband in my face,
“Your PET scan results were posted!”
“Is it good??”
“Uhh…just come downstairs.”

Crap. Pardon my French haha, but that’s literally what ran through my head. As many of you know, I had a full-body PET scan last Tuesday after my first infusion of the PD1 Antibody thingy (I really need to figure out what that’s actually called!) So as we’ve not-so-patiently waited to hear from my oncologist for the week, we came to two very different conclusions: either it was good news and just got dumped to the bottom of the pile to call or it was bad news and he was getting all the info before calling. Unfortunately, it was the latter. I actually, at the loving hounding of my husband, called my oncologist’s cell phone this morning because it seems that he was just never gonna call me. Not cool. Sorry, but if you give me your cell phone number and you hold pertinent information regarding my health and well-being, I’m gonna use it. Your fault, not mine, lol. But he did answer and was able to discuss the results with me and the implications of them. So here goes:

The cancer has metastasized into multiple lymph nodes surrounding my lungs and also into my hip bone. Yikes. I don’t know a lot about cancer in the bone, but I know enough about it to know it’s not good. My oncologist mentioned several times how aggressive my cancer is. Great. None of this is adding up to the good news I had hoped for! There is some good news though, the lymph node in question before on the left side of my neck took up a significant amount less dye and it shrunk so I think we are done worrying about that little bugger. And besides some “scar” on my right lung (??) nothing showed up there.

Here’s a look at the final report:

20140623-143159-52319594.jpg

And here’s what we’re gonna do about it: nothing. For now at least. Dr A seems to think it’s best to let the chemo work and check another PET scan in three months. He says there’s a 40-50% chance that this new drug will shrink the tumors. He says as long as there’s no pain in my hip (which there isn’t), that we can’t really do anything for that anyway. I verified this with my sister in law, who is a radiation tech, and she agreed. So I feel better about it now. At first I was very hesitant to do nothing. Like, isn’t there something we could do?! As long as I’m not showing symptoms (pain for the hip lesion and for the lymph nodes around my lungs it would be cough, shortness of breath, that kind of thing) he wants to just let the drug do its thing and check another PET scan in three months. So that’s what we’ll do! As long as I’m asymptomatic, at least. If symptoms crop up, he can bump up the PET scan and I’m due for another MRI of my brain in about a month.

Can’t lie, I kind of saw this coming. I’m not saddened or surprised, more just frustrated. It feels like I’m being violated by this cancer. I have no control over what it does to me or where it goes next. I feel helpless, but certainly not hopeless! God is our great comforter and He has provided all that He promised He would. This news is infuriating because I really freaking hate cancer!! But, with my stage (4) and apparent aggressive form of it, I’m not sure I should expect anything else. So I will stay the course and see where it takes me.

So, I’m gonna ask for a favor here. I have so many people praying for us, that I know I don’t even need to ask for that. Seriously, if it weren’t for people lifting us up in prayer, I’m pretty sure I would be a sobbing hysterical mess right now. But I’m ok. What I want to ask of you is that if you know someone who tans, whether laying out or, even worse, in a tanning bed, please, please tell them about my story. I’m 30 years old and now have cancer in my blood, brain, lymph system, and bones, but it all started on my skin. I am faced with the harsh reality of leaving my kids and husband sooner rather than later. Melanoma is a horrible, horrible cancer. Yes, if you find it early it can have a high “cure” rate, but if not, you end up where I’m at. It’s not worth it. And it can happen to anyone. Please, spread the message.

And be prepared to get an earful if you ever, EVER talk to me about tanning 😉

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31 thoughts on “Just When You Think It Can’t Possibly Get Worse…

  1. You have endured so much with such grace ! In my 63 plus years I have NEVER met anyone like you. PERIOD.

  2. Hi Kim-Stu Metzler mentioned praying for you and I wanted to reach out to you directly. I lost my husband in 2008 to a rare and very aggressive cancer. I wrote a book about my journey that you, and especially your husband, may be interested in reading. Let me know if you would like a digital copy – brendaleefree at gmail. dot com

  3. Kim when I read your blog, I am ashamed of myself feeling sorry about what I am going thru with my husband. I am amazed at your outlook and know it is The Lord and only The Lord who is giving you the strength and courage. Keeping you and your family in my prayers. You are loved.

    1. Fran, we all have tough times and I think it’s ok to be frustrated sometimes, you’re going through a lot too! No shame, but I’m glad if it helps you feel better about your situation. Each day really is a gift. Love you, Fran!

  4. I had a bad day recently and was full of self pity. Your journey made me realize how precious each day is and that I have nothing to complain over. I pray for your healing and for total remission of your cancer. Your resilient attitude is something we can all learn from. God Bless You.

    1. Aww I’m not trying to make anyone feel guilty, we all have issues lol. But I’m glad if it helped put things in a better light for you, none of us should waste our days, right? 🙂

  5. Kim,
    Your latest post has me seeking God with a question about how I can use your story to not only make sure people understand what the sun can do to them but how can I use it to witness to them too. While I have done my best to be diligent with sunscreen, I know so many more people who do not even care; they just say they burn every time no matter what. So, while it was not the news I was praying for, I accept your challenge and will pursue spreading your story but more importantly, I am going to use it as a way to open doors to tell then about how God has impacted your experience in this horrible situation. Thank you in advance for allowing me to serve our amazing God with your help. You truly are inspiring and please continue to blog. Your story will impact others – in many ways; just like it has me. You are loved by many and are prayed for often. I pray to God that He would give you the assurance and peace to continue your path without pain. May He grant you and your family many days in the next month where your CANTCER is not the first thought on your mind and that you enjoy the days surrounded with love and laughter.

    1. This really warmed my heart! Thank you so much. My prayer is that this situation will reach people for Jesus, whether through me or others. Thanks so much for being a part of that, Susan! ❤

  6. First, I want to say you are loved and many are praying. Megan and Penny Feveryear are cousins and I watch your story through Megan. I will repost this to my FB page for all of the teens I know tan both ways. ❤

  7. Dear Kim,

    My husband and I continue to pray for you every day. God is using you in a mighty way to reach out to others. We continue to pray for peace, strength and complete healing for you. Below I attached a stage 4 survivor story from the Melanoma Foundation – New England website. The gentleman’s story, Bob Hefferman, is listed on that page. He has had great success for his metastatic melanoma at the National Institute of Health in Bethesda, Maryland. This guy went through the treatment back in 2010 when it was still experimental. Maybe it has been approved since then? It may be worth a look?

    Many stage 4 melanoma patients are seeing all their tumors disappear in a new treatment being pioneered at the U.S. National Institutes of Health in Bethesda, Maryland — called adoptive cell transfer (ACT). It’s a huge step forward for us melanoma survivors who previously had so few options that could lead to anything near a “cure”.
    I underwent the new treatment — still officially experimental — in January-February-March 2010. I was in year four of my battle with melanoma that started on the top of my balding scalp, then traveled to the lymph nodes in my neck, and then to my lung. I had been treated at one of the world’s best melanoma hospitals, Yale-New Haven in my home state of Connecticut USA. Yale did three surgeries on me, a year’s worth of Interferon, and two ugly weeks of Interleukin-2. When the cancer was still in my lungs, Yale referred me to the new NIH treatment.
    Here’s how it works. NIH researchers have discovered the body makes specialized white cells to fight the cancer — they call them TIL cells (tumor infiltrating lymhocytes). Surgeons at NIH took out the largest tumor they could find, which was rushed to the NIH lab. Just four days later, I was standing in the lab looking through a microscope at those little TIL cells. The lab spent another four weeks growing my cells (their target is 50 billion cells, but for me they grew 67.2 billion!). When the cells were ready, NIH called me back and hospitalized me for another three weeks. During this time, they took down my immune system (one week), and infused the new cells into my bod, and spent the next two weeks rebuilding my immune system.
    I’m the second Yale patient to go through the ACT / TIL treatment. The first, “Roslyn”, had melanoma tumors throughout her abdomen. For three years now, she is totally cancer free. We’re thinking that wonderful thought for her: CURE! I have been scanned often in the year since my TIL treatment, and the doctors are seeing only 2 tiny lung tumors that have either been unchanged or shrunk. No new cancer anywhere else. Since there has been no change and actual shrinkage in 15 months, the doctors are cautiously hopeful that they might be necrotic or scar tissue images. It’s possible my TIL cells have already done their job and attacked the cancer — but I won’t know for sure for another year. I am in perfect health. A third Yale patient, “Jeff”, had the TIL treatment in the spring of 2012, and within two months all his tumors disappeared except for one, and that shrunk dramatically.
    This ground-breaking new treatment is great because the new TIL cells are my own cells — there are no rejection issues. They keep on living in your body and travel throughout looking for melanoma cells wherever they are. My personal strategy was always to attack melanoma before it reached my brain — and that’s why I jumped at the chance to participate in this new research trial.
    Some caveats: first, you have to been in good shape to go through the ACT/TIL treatment. The process of taking down your immune system is nearly identical to what leukemia patients go through when they get bone marrow transplants. So it’s tough. You’re prone to infection and horrific nausea from the chemo that takes down your immune system. But I never once even had a fever, no infection, because they fill you with anti-virals, anti-fungals, and anti-bacterials. As for the nausea — I just toughed it out because I was there for the cure!
    Second: this ACT treatment is showing better results than any other melanoma therapy out there (except for surgery). Response rates are near 70%. NIH is seeing total remissions in at least 25% of the patients. So, the research is still attempting to answer why it works for many patients, but not all patients.
    Third, since it’s still experimental, most insurance plans do not cover it entirely. TIL is being done currently in only three places on Earth: NIH in Maryland, MD Anderson Cancer Center in Houston, Texas, and a hospital in Israel.
    Fourth, for the time being, patients with brain mets cannot be candidates for ACT/TIL (unless their mets are so small). The chemo that takes down your immune system also temporarily damages your platelets (clotting factor) subjecting the brain met patients to potential strokes. However, I met two NIH patients whose melanoma brain mets disappeared after the TIL treatment. Those beautiful TIL cells do get through the blood/brain barrier!
    Learn more about this awesome new treatment by going to the NIH website:
    http://www.clinicaltrials.gov and then type “TIL adoptive cell” in the search field.
    Or, you can contact me directly at RVH55@aol.com
    Love & Hope,
    Bob H

  8. Kim, if it is okay with you, I will say some Buddhist mantras for your peace and well-being. If it’s not okay, of course I won’t, and I will just think of you and your strength and bravery in spreading this message, and in any case I promise to keep slathering on the sunscreen and covering up with clothing and doing everything possible — like not tanning — and spreading the message about melanoma. I am so sorry this is happening to you. It sucks. The penalty for youthful carelessness shouldn’t be what is going on in your life and those of your husband and family members. A wrinkle here and there is one thing, but not this horrendous bu****it. I am so sorry. I am grateful that you are choosing to use your energy to spread what could be a lifesaving message. Thank you for that. I wish I could help in some way, but I can at least spread your message to everyone I know.

    1. Gwyn! Thanks for this! I’m so so glad to hear you will be taking amazing care of your skin and spreading the message! You rock!! No need to say any mantras for me, but thanks for the kind offer and for your encouragement ❤

  9. my prayers are with you…I spread the tanning message everyday in my practice…even though these patients don’t want to hear it…I never used a tanning booth but have red hair and fair freckled skin and have stage 3 melanoma…hugs and angel wings to hold you when you are scared…

  10. Kim,
    If it is ok with you, I’d like to post your last request you word it so well. I didn’t want to without your permission. I will just say a friend and will not mention your name. If you don’t mind me asking, did you tan? I did way back in HS for the prom and that was it. I am bad though going outside to the pool or anywhere without sun block on. This is something I will try to get better at. Praying for you and your family! Your strength and attitude is a miracle itself!

  11. Just read through your blog while researching some treatments. Very inspiring. I hope PD-1 is the answer for you, it has done so much good in the melanoma world. I was diagnosed at 28 with three small children. Tough stuff. I will pray for you.

  12. You commented a week or so on my blog so I thought I would check you out today. I am going to put you on my daily prayer list. I am going to read more of your posts to get a better idea of what you are going through. I hate cancer and I count everyday I am here as a blessing. Many blessings to you and your family.

  13. You found my blog; I came to yours. I’m so sorry to hear your story. I just am. I hate cancer. Love and prayers for you from a stranger.

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