Watchful Waiting

This will not be an eloquent post. My brain is fried from two weeks of stress, two CyberKnife sessions, a boatload of steroids, and very little sleep. Please don’t judge my written products on this rambling!

With the disclaimer securely in place, I can now tell you that I have an update and a plan; I shall soldier on with a mediocre post intended only for disseminating this information.

I met with my primary oncologist, Dr. Roush, in a new office yesterday. It was our first appointment since October 15: the date I was dispatched to begin the LDK378 trial. We’ve talked on the phone, and I saw him in the hospital two weeks ago, but this was our return to the professional office setting.

Previously we met just two miles from my home in an older but functional professional medical building. But at some point in November, the building’s tiny elevator broke; it took so long to fix that they finally walked away from the office lease.

Yesterday it was a 40 minute drive to get to the office. But it can’t bother me too much. I’m just so glad to see my doctor again!

Dr. Roush met me in the waiting room and escorted us to the back where the nurses took over. It was nice to see some friendly faces; about half of the old crew moved to this location. After the usual measurements, blood work and intake questions, I climbed atop the exam table.

Dr. Roush walked in. I motioned him over, arms wide open for a hug. He chuckled a little, “you’ve made my day!” He looked at me and paused ever so briefly. “Don’t take this the wrong way, but you look as good now as you have since I’ve been treating you!”

I was flattered. I did lose 40 pounds on the LDK378 trial, and I certainly look like a healthier person, despite my 5 shiny new brain tumors. Given the way I’ve struggled with extra weight my entire life, I’ll be happy if you call me a “damn skinny bitch” until I’m a size zero. Just make sure you take me shopping for the snazzy clothes I’ve never been able to wear!

Dexamethasone
Now it was time to get down to business. Steroids were way above tumors on my list. It’s time to wean off the steroids. Monday was my first day cutting back, and I will be roid-free by July 17. Woohoo! My face is gross and puffy, my knees are swollen, I can barely write my name, and I’m just exhausted from not being able to sleep for more than an hour at a time. I also regained 3+ pounds just since my seizure. You know that makes me an unhappy bunny!

Lungs
The best news of the visit had to do with my lungs. Thursday’s PET scan looked better now than it has since my diagnosis. LDK378 really me beat me down – lung cancer included!

Here’s the meaningful part: I can ignore my lungs for now and just focus on my brain. I’m not restarting chemotherapy (we were considering Taxotere), I don’t need to hop into the next trial, and I don’t have to uproot my family to Boston for treatment. I don’t have to make the choice (yet), and THAT’S a proverbial breath of fresh air!

Brain
If you regularly follow my blog and Twitter feed, there might be some repeats here. Again – please see the forward to this post which mentions how I’m running at a truly mediocre pace today!

My seizure was on June 16, and I went home on June 18. I had CyberKnife Robotic Radiosurgery on June 24 and 28. I’ll spare you the detail of each scan and doctor appointment which took place before the big zapping. Let me just say that I doubt there are many spectrum of light known to man that haven’t entered my brain/body in the past two weeks!

Next Steps
From here I will venture down one of three short paths. And from what I can glean, my odds are pretty decent for the happiest of options to follow.

My next MRI is on July 19. The best case scenario is that we see the five tumors shrinking AND the residual lesions (which Dr. Roush and I are affectionately calling “brain lint”) disappear. You see, those might be nothing or they might be the development of other tumors. It’s too soon to tell.

Improvement means no immediate intervention is needed. I would continue to go month-to-month, treatment free until an MRI or PET scan showed the need to intervene with a treatment for my lungs, brain, or something else. I could be looking forward to 3 or 4 month reprieve!

The next path is quite sobering but not unconquerable. If my “brain lint” does not disappear, I will have to take at least one month (three weekly doses) of Camptosar chemotherapy. This option is still far more attractive than whole brain radiation and one that Dr. Roush has already discussed with my newly assigned radiation oncologist. After that one month of chemotherapy, we would recheck the MRI and hope to return watchful waiting mode.

The really unhappy path is if we discover, just three weeks from now, that I have a new fully formed tumor, lots of new “lint,” or if any of the five zapped brain tumors have grown. That puts me in the express lane to whole brain radiation and probably chemo too.

The Wrap-up
It’s true that in the new ‘worst case scenario’ it becomes a real possibility that brain mets will do me in long before lung cancer has a shot. Still, I refuse to believe I’m on any sort of “timetable.” There are too many variables.

And I still have a lot of (fun) shit to do before I go anywhere!

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11 responses to “Watchful Waiting

  • Sabina

    Hi Jessica. I was delighted to receive your response to my comment on your earlier blog entitled K.I.T. Knowing how preoccupied you must be with managing your health, it was both unexpected and appreciated, Now for my comment on this blog. Please don’t feel obliged to respond to it. It’s only a bit of verbal fluff to let you know I’m listening.

    It always amuses me when brilliant writers apologise for “rambling”. You have even organized the information under sub-headings so we poor readers don’t get lost (BIG smile). Your thoughts are very organized and easy to follow, which makes reading your blogs a pleasure not a chore.

    I have no personal experience with cancer or its treatments, so I was very interested to learn about the Cyberknife Robotic Surgery via the link you provided. What a fantastic innovation. Annoyingly, I couldn’t get the video on the website to play, so I couldn’t watch a demo of the treatment. I will try to find something on net later.

    I shall say a special prayer tonight that your five little tumors have shrivelled into nothing and your “brain lint” (love that expression, not the thing itself) has spontaneously disappeared.

  • Linda Forem

    I’m all for you having as much fun doing “(fun) shit” for as long as you can in life! Go for it Jessica!

  • Robin

    Jessica you are such a strong women you are a hero to a lot of people you keep have fun doing your fun Shit enjoy every minute of it
    we are sending you lots and lots of love and prayers you are in our hearts
    sending you lots of fluffy bunny hugs too

  • HP

    Yo girl, fun shit rocks! Keep on keeping on too! We miss you in this little hole we call CPS-fa real!

  • Patrick

    Jessica thank you for sharing with such passion. Sorry but sometimes modern technology overwhelms me and I apologize for any delays. … in my lung cancer odyssey when brain mets were first discovered I was told I was not a candidate for cyber knife until what you refer to as brain lint was cleared out first and after chemotherapy … in my odyssey I was unusual in that I experienced little to no side effects from radiation … on the other hand Chemotherapy Round 1 was a butt whumpin’ … go for it Jessica!

    • Jessica

      Hi Patrick – I’ve been following your experience with Cisplatin. I’m sorry it’s been so nasty to you. Carboplatin was nicer to me, although it didn’t do anything to actually help my cancer, so…

  • Jeni

    Thank you Jessica for consistently explaining everything so well. (Ummm…”ramblings?” I don’t think so!) I’ll keep my paws crossed for positive results on 7/19! 🙂

  • Ann Cowan

    Jessica, I always read your blogs. You are a great writer and I always have you in my heart when I read them. I so wish that I could take all the bad times away for you. Please remember that you are in my daily prayers and that I send you much love.

  • Sjoukje

    Youre such a fighter Jessica and that makes me happy!! We got all paws and fingers crossed here and hope for you it will be best case scenario!!!
    We send you lots of love!!
    xx

  • Overachiever | stage iv

    […] a test, I got a D, maybe a D minus. I had prepared myself for the most probable case: unresolved brain lint. That would have led to one month of chemo, which may have fixed […]

  • Debby

    Brain lint for us meant yes you definitely need WBR. The sooner the better. Be sure to be on seizure meds before & during your WBR. Good luck & God bless.

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