No Brakes

6:30am is not one of my scheduled times for a dose of Ativan. The short-acting benzodiazepine is a go-to drug used to alleviate everything from anxiety to nausea to insomnia in cancer patients. I suppose I am in need of all three right this moment. 

I had my 3rd-ever CyberKnife session yesterday. The neurosurgeon was running late, which meant an extra hour in the waiting room while he and my radiation oncologist put the finishing touches on the plans to zap three growing brain tumors. 

Two were to be dosed that day and one next Tuesday. The treatment went off without a hitch. The head cup was a little more comfortable this time, and after 55 minutes of being strapped to a hard table by my face, I was free.

The next step was to meet with the doctor before heading home. 

He was available immediately. We sat down and asked a few follow-up questions. I wanted to confirm that we could keep zapping little pop-up tumors based on where they were, which CyberKnife “fields” are were still available for use, etc. 

But at one point he just interrupted with “I have some news.”

I didn’t feel the room get cold. There was no tingling that ran up my spine or goosebumps on my arms. I just sat, perfectly still, and waited for the approaching semi to hit me. 

He explained how he and the neurosurgeon reviewed all my scans in as much detail as possible: the ones done to match the precise CyberKnife machine calibration, with the newest software program. And they had a few recommendations.

First, they discovered other tumors (ones thought to have not grown or have previously only been identified as “lint”) they would like to treat, as well. FIVE of them.

It took Seth and I a minute to comprehend the simple arithmetic. “So you want to go from 3 total to 8 total?” I said at one point. 

Indeed. 

So we talked it through, and the idea of waiting to see if they would suddenly stop growing (for no reason) just seemed absurd. I was already scheduled for another session, I have my mask already made, I might as well deal with them now. 

In my case it takes 25-30 minutes per brain tumor. So on Tuesday and another day TBD I will lock-in for long, 90-minute sessions of CyberKnife once more. 

Still, I’ve tried to think of this as a positive thing: treat them now and not later. But the news didn’t end, and I sensed the semi was gaining speed. 

The two doctors didn’t feel that I received any benefit at all from whole brain radiation (WBR). (More on that soul-crusher later.) So their final recommendation to me and my primary oncologist is to begin chemotherapy immediately after my third CyberKnife session.

The runaway truck hit me, and as I sat positioned between the doctor and Seth I could only hope I was shielding him as much as possible from the impact.

My headed flooded. I was expecting a normal “everything went well – see you on Tuesday” conversation and handshake. Instead I was getting version 2.0 of shitty scan results.

We talked for a few more moments. When I asked if he thought he could still get my doctor on the phone, he said, “I think I can.” It was already 4pm, and I knew if he could get Dr. Roush on the phone, I would get a callback from Dr. Roush before the weekend.

Briefly, I recapped our agreed-upon next steps: a) we will zap the remaining SIX spots during 2 sessions, b) one is already scheduled for Tuesday, and c) the name of the person who would be calling to schedule the third.

I told him I would need to think about anything past that, talk to Dr. Roush, maybe others, and thanked him for his time and candidness. Somehow Seth and I found our way to the car, then home. 

Dr. Roush called from his cell phone around 5:30pm – much earlier than I anticipated. I quickly placed him on speakerphone. 

He was “very disappointed” by the follow-up news from the neurosurgeon and radiation oncologist. We talked only briefly about the success of WBR: he still holds that there was partial benefit – maybe that’s just him wanting with all his might to think we didn’t fry my brain for nothing. (Thinking about that is a vomit-inducing post unto itself.)

Moving on, he agreed that I (generally) have nothing to lose by zapping the five new spots discussed that day. (I say generally because all of this treatment has risk, of course.)

We spent the remainder of the conversation discussing chemo. Was Camptosar still his drug of choice? Yes. What are the other drug options? He explained. Why not them? He explained. What would your colleagues say? He talked though various scenarios, why the other drugs would be a lot riskier, etc, and at the end of it all I felt good that he had done and will continue to do all research, reading, and discussion with anyone he needed to make sure I get the best treatment. He’s not going to cure my cancer – no one is. 

Once I know the date of my third CyberKnife session, I’m to call his office to schedule the visit and chemo infusion. Camptosar is administered weekly and tends to be gentle as chemotherapies go. (Hopefully I’m in that majority this time.) I didn’t ask how long I might benefit from Camptosar or what is next when it stops working (if it works to begin). I didn’t have the heart or the stomach to hear those answers. Not yet. 

After a pause, I finally did ask him if we can delay chemo until November. He told me he would work around whatever I have scheduled, but no, we should begin right away. (I purchased our plane tickets to the NASCAR race just the night before. Had I waited another 24 hours, my decision would have been different.)

So, you’re up to speed now – less than 24 hours since it all began. I feel particularly horrible about the whole thing. Problem is, I’m not sure how much of it is feeling my impending and escalating timeline to death -or- just feeling crappy from being bombarded with so much radiation.

I certainly don’t remember feeling so sad and scared after my last CyberKnife treatment.

Advertisements

24 responses to “No Brakes

  • Nicole (@ladyjustice333)

    Jessica, thank you for sharing. You have been through and continue to go through hell and back. I imagine it’s beyond scary as you try to fight to live. Unimaginable. The closest feeling it brings for me is my own father’s courageous battle with very aggressive lung cancer, just like you. The difference is we know it had metastisized all throughout his body but not sure if it had reached his brain.

    There are no words I can say except to remember as you know better than anyone that each day is a gift and none of us is getting out of this life alive. Those of us that think we have tomorrow or beyond are deluding ourselves.

    You Jessica, continue to inspire me. There are few people that are heroes to me.

    You are one of them.

    I hope you will rest your thoughts when you can, and give that sweet bunny a hug. ❤ beside you…nicole

  • linnea11

    Jessica, I can feel that truck barreling down on you just as you describe it. Hard, hard news. However (and remember, I refer to myself in the double entendre, terminal optimist)—the next ALK inhibitor currently in the pipeline (but supposedly coming to clinical trial by the end of the year)—is rumored to cross the blood brain barrier. Hang in there, sweetie. This sucks but you are tougher than you know. And I’m planning on ours being a long friendship.

    xoLinnea

    • Jessica Rice

      Thank you. Now I just need to figure out how to tell my mom that we’re ‘making an alteration to my treatment plan to be more proactive on the smaller stuff.’ Like that spin? It’s like the truth if you shrunk it in the dryer.

      I appreciate your support and e-affection.

  • bnmathre

    Sent from my Verizon Wireless 4G LTE smartphone

  • stage5cancerblog

    Hello my friend. I just finished another cyber knife session as you know, but it is nothing like what you are going through. Hate, hate, hate this disease. What I do know is that when I have felt the worst during these last two years I always keep focused on the fact that there are still good days ahead. Even if they are a time away, they are there up ahead so I just keep focusing on getting through the difficult days right now and keep moving toward the good days I can’t see yet. The chemo will be hard, the radiation will make you fatigued, the steroids will suck. Eat, hydrate and move your body as much as you are able. Don’t stop, keep moving. I will think of you often and I send you love and light every day. Tell Seth there are many of us out here watching how kind and wonderful his love for you is. You guys are very lucky to have each other. You can do this, but I am sorry that you have to.

  • Linda Forem

    Jessica,
    I am so sick inside hearing this news and I am also inspired by your will to live as I would be just like you. Be good to yourself. Love that man of yours. Seth is amazing.
    Now that you are living this vicious cycle of treatment I BEG you to read THE CHINA STUDY by Colin Campbell PhD. In it he has definitively proven that cutting all animal protein from your diet will affect the growth of cancer cells.
    Please read this book. You truly have nothing to lose and as you are so knowledgeable about cancer treatment this could give you more information. It may not cure you. But at Cornell University his research team definitively proved that ceasing animal protein intake will arrest cancer cell growth. They have many studies supporting this. But as you know, Cornell is an agricultural school and gets many grants from the cattle and dairy industries. So he was almost shunned from getting publicity of his findings. This was over 25 years ago. Imagine what it would do to our economy if the US FDA supported this research. It is a fact that in countries where people eat plant based diets, there is no cancer, heart disease or diabetes.
    You can get protein from many other sources. Green vegetables , beans, tofu. I never thought I would like tofu but I swear it tastes just like meat when you cook it like you would meat. If you have a Kindle please download this book. Or at the very least, google the book.
    With all that you are enduring through treatment, please consider your diet as well.
    I say this with love for you and a desire for you to live. You don’t know me, yet I care about you. I have a 28 year old daughter. I so relate to wanting you to live as your own Mother would.
    Please read THE CHINA STUDY.
    all my best,
    Linda

    If you do continue to eat meat, please be sure it is not infused with hormones.
    Also farm raised fish is fed chicken parts that are infused with the same hormones the chicken was fed, so if you eat farm raised fish you are in fact eating chicken!

  • Craig

    I wish there weren’t more mets although it doesn’t seem too much of a surprise that better images let them find some tiny ones. If it is any comfort, targeted radiation has been used successfully for as many as 32 brain mets at once:
    https://www.inspire.com/groups/lung-cancer-survivors/discussion/success-getting-treated-for-multiple-brain-mets-with-gamma-knife/#cmnt_3351442

    I’m hoping that the targeted radiation and chemo will be a good bridge to a next good drug for you.

    Best hopes,

    Craig in PA

    • Linda Forem

      Craig in PA.
      I am compelled to respond to your critique of The China Study and nutrition as a benefit to retarding cancer cell growth.
      The book did not claim to Reverse or cure cancer. It talked about arresting the growth of existing cancer cells.
      When I think about the treatments that my sister endured for 11 months only to succumb as a result of the tumor growth and extreme radiation on her lungs, the side effects of which were horrific for her, I cannot help but wonder why you could downplay a whole food plant based diet as a supplement to the medical trials and treatments endured by late stage cancer patients, if tolerated.
      There is no magic bullet here. A trial is a trial. And please consider the sources of the rebuttal you quote. They are self serving at best.
      I wish nothing but good wishes and peace to Jessica.
      Regarding milk, isn’t it a bit odd that we humans are the only mammals to continue drinking milk long after infancy and on top of that, drinking not our mother’s milk, but that of another animal?
      With love and respect.
      Linda

    • Craig

      Linda,

      I’m sorry to hear about your sister. I have stage IV never-smoker lung cancer something like Jessica’s, so this is a personal issue for me, too.

      Late-stage lung cancer is hard, and most of the weapons to battle it can be, too. One should not assume that some unproven home remedy is effective against lung cancer just because they didn’t like the outcome an individual got using medicine with proven odds of benefit and risks in patients with similar cancer. Each claim has to stand on its own merits.

      FWIW, their diet may reduce their odds of getting some kinds of cancer, but apparently their diet doesn’t stop cancer in vegetarians or else there wouldn’t be a cancer mortality rate for them:
      http://www.veganhealth.org/articles/dxrates

      Best hopes,

      Craig in PA

  • Kathleen Hoffman, PhD

    There is no way I would press the like button…I know this is too much…way too much….Please tell your doctor about the NASCAR trip and go…that is important too (making memories and living). You and your fiance need to have fun! Praying for better news!

  • grayconnections

    Jessica, I’m so sorry you received such rotten news. I know what LC trucks feel like when they hit, though I haven’t yet experienced one as big as the one that just hit you. Hopefully new ALK targeted drugs that cross the BBB will be available to you and others soon. I hope you have a wonderful time on your NASCAR trip!

  • Deborah

    Jessica, I am deeply saddened by what you are going through. My 28 year old daughter just passed in May and experienced a lot of what you are going through. She had 2 tumors cyber knifed in 2011 and 10 in 2012. (We thought it was 6 until the further tests were completed the morning of (just like you). She also had brain “lint” (which was really tiny tumors). She was unable to get all of her WBR treatments because of serious seizures. Our next step was to be THC oil. Hopefully you live in a state where it is legal. I feel you should try everything you can. Google THC oil and read up on it. Also I just read about juicing the marijuana plant and its more powerful than the oil. Please also google the PH Miracle diet. My daughter was on that with good results, but didn’t stick with it. May God bless you and guide you.

  • Hunnybunny, Carmie & mommy Shirley

    Sending lots of prayers & hugs!

  • Ryan

    Jessica…. I am so so sorry you are going through this. I have many moments myself wondering ‘why’, I have stage iv stomach cancer myself. I will be keeping you, Seth, mom and bunnies in my prayers… (my 18month old loves her stuffed bunny – ‘bun-bun’)

  • Cate

    First I want to thank you for this blog and let you know I am praying for you. My brother was recently diagnosed with stage IV nonsmall cell lung cancer and your blog has been encouraging to me. Pardon my ignorance but I have a question for you. What is the difference between chemotherapy and the cancer killing medications you have received to date? That is, why are the medications you have received to date considered to be chemotherapy?

    God bless you!

    • Jessica Rice

      Hi Cate – I’m glad you found my blog.

      On my blog I talk about both traditional chemotherapies as well as newer drugs called “targeted therapies.” To keep it extremely basic, chemotherapy drugs target all cells, including healthy ones. Targeted therapies only work to destroy the mutated cancer cells. So for many people who can take advantage of them, they are more effective and gentler. Please make sure your brother has discussed all of these with his doctor!

      If you have more questions, ask away. I don’t know a whole lot, but I know people who do! 😉

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: