A Hard Hit

My tongue really hurts; I’m eating a lot of ice. After all, I did bite the shit out of it during my seizure on Sunday night.

48 hours after the whole ordeal began, I have returned home and am plopped in my bed. Four spots, seven spots, five – it seems that every doctor sees a differing number of small brain tumors.

My newly assigned radiation oncologist has recommended that we begin with stereotactic slicing and dicing of the five largest spots. We are using this as the first approach to tackle my little tumors. It’s a lofty goal – getting five spots with this method – but I have little to lose. If it doesn’t work, I’ll have to have whole brain radiation in the next three months. If it does work, I can probably put off whole brain radiation (and the related side effects) for about a year.

Tomorrow I meet with the neurosurgeon who will help guide the “knife” during radiosurgery. By the end of the day I hope to have scheduled the appointments to make my mask and start zapping my spots. The radiation oncologist mentioned that they might be able to do everything in just two sessions. The sooner I can get zapped, the sooner I can get off steroids and anti-seizure medications.

Then I begin chemo (again). Camptosar should extinguish any remaining brain tumor cells. Unfortunately it probably won’t do much to help my lungs. Dr. Roush and I still need to figure out how to handle them. If I had to guess, I’ll start one of the Taxane drugs: Taxol or Taxotere.

So will I lose my hair with stereotactic radiation? Probably not. But there’s a good chance the Taxane drug will take it if Camptosar doesn’t. No, it’s not the end of the world – just something else to which I’ll need to adjust.

Another adjustment? I can’t drive for six months. Evidently the Commonwealth of Pennsylvania doesn’t want to risk me having a seizure while I’m on the road. I don’t blame them, but it still sucks. I have a fun little car that goes very fast. (Seth has promised to relocate my racing seat belt to the passenger side for me.)

Honestly, though, this one is hitting me hard. Perhaps even harder than my initial diagnosis of lung cancer. But all I can do is take it one day at a time and find strength in my family and friends.


18 responses to “A Hard Hit

  • Sjoukje

    Hoping for the best results here my dear Jessica!! Sending you big hugs and nosebonks and everything else you need!!
    xoxo

  • juli@djvassociates.com

    Jessica, You are such a strong person. God Bless you as you take on this latest battle. I am glad you have such a strong partner in Seth. Knowing he supports you throughall of what you have been going through is a special blessing. I hope Blossom & Gracie take extra special care of you. Juli, Morgan & Valentine

  • Anne Gallagher

    Jessica, I am sorry about this hard hit. You are a strong, courageous fighter and I will be keeping you in my prayers! With Hope, Anne

  • Andy benoit

    Jessica, just so you know, you interrupted a perfectly meaningless shopping spree at 4 am on Woot! The Woot monkey will be notified in the morning. But all bullshit aside, I am so sorry for all of your emotional and physical pain you have been forced to “deal with” since that nagging cough in August, 2011. I have read most of your blog. I am a nurse practitioner in Louisiana, and you were spot on when saying ” my own bed and bunny was far better than exposing myself to a lot of sick people.”
    I would like to know (if you’re willing) more about your abdominal symptoms and what else you’ve tried both via Rx and/or homeopathic. By the way, the marinol you mentioned is only good for anorexia at “normal” doses, and not much pain receptor blockade happening. I would love to perhaps help in any way. I firmly believe after helping so many cancer patients in my primary care clinic, that the SupRa-educated, carotid-restricting-tie-wearing MD Specialists often see the Zebra and not the Horse– in other words, sometimes it’s best to K.I.S.S. (keep it simple, stupid). The one thing I am worrisome of is you not being able to take the “balls to the wall” (whatever the hell that originated from and what it means, I’ll never know, but it does sound cool) … Anyway, not taking maximum allowable dose with NO med holidays. I fear taking “acceptable” amounts with “allowable” holidays is risky. After all, the pharmaceutical company DOES want you to succeed; however, the harsh reality is that you and every other patient in ANY “clinical trial” is an Excel spreadsheet for some statistician somewhere. Which reminds me….are you in a clinical trial? Double blind? “Placebo controlled?” I would hate for you to be given a placebo pill. Although I doubt that is done with certain stages, etc. in case you do decide to reply, if its not too off putting can you send a simple text like “reply sent” or “email sent” to my cell @ 318-969-9543. I rarely check my email.
    P.s. I am sorry to hear about your seizure. You’re a trooper for sure. You should research antioxidant therapy, such as Cerefolin NAC and Metanx. Also do you have city water or well water at your home?

    • Jessica

      Hi Andy, I hope I haven’t angered the Woot monkey. I’m a big fan! As of today, I’m on no trial. I have my 2nd of 2 CyberKnife (SRS) treatment on Friday. Then I expect to start Camptosar on Monday.

      Maybe. I have many questions for my medical oncologist first, AND we still need to see if the rest of my PET scan will be clear.

      Thanks for reading along.

    • Andy B

      In case you do lose your hair, just remember that “bald chicks are hot” is a more commonly held “dude” belief than most people know. You are a beautiful person, whether you’re bald or “nappy headed” :})

  • Craig

    I can totally understand your perturbation over the new development. There’s not much one can say about it other than it just plain sux. FWIW, on the support forums there are examples of people who have survived either multi-targeted or WBR and are still doing fine a long time later on their cancer drug(s), so I’ll hope you do just as well.

    And I hope there will be other tolerable treatments to try later. (Even if having tried one 2nd gen ALK drug excludes you from another, I wonder if it is possible to get a “compassionate use” of one of the other 2nd generation ALK drugs if other options seem to be running thin?)

    Best hopes,

    Craig in PA

    • Jessica

      You know, it really does suck. Whatever happened to “LDK crosses the brain/blood barrier?” I hate to play the victim over and over again, but WTF?!

      My mind is so precious to me; I think this has to be the toughest card dealt.

    • Craig

      FWIW, as far as I know, nobody has reported how much of the LDK378 crosses the blood/brain barrier. There are reports of people who have gotten brain mets shrinkage from LDK378, but maybe there are also cases who didn’t get that, for whatever reason?

      The radiation side effects might not be as bad as you fear, and the radiation has a good chance of addressing the current problem, as I’m sure your doctors have told you. Be prepared for any possibility, but there’s no point in assuming the worst.

      Best hopes,

      Craig

  • Michelle

    For lack of knowing what else to do, we are sending you healing vibes from Canada Jessica. You have gotten up more times that you have been knocked down and we know you will continue to do so.
    Mr. Doodlebugs and Molliemom

  • Jill.Ann

    Sending positive energy and hopes that these new procedures are expedient and new treatment plan a total success. I am just so very sorry for this added burden. Keeping you in my thoughts. Thank you for keeping us updated. Jill Ann

  • Debbie and the Duchess of Binkytown, Bella

    Sending you lots of love and positive thoughts. I had Taxol and I did lose my hair – when it began to fall out, I simply shaved my head. I did not want to be one of the poor souls who left small patches growing here and there. On a positive note, I did not have to shave my legs and underarms for many, many months!

  • kimmywink

    It’s nice to have a plan…

    And, if your in a bind to have that car driven I’ll fly out to help. xoxo

  • Stacy Ann (@sas1268)

    Jess, I have been trying to think of the appropriate words to say and am still speechless since I saw Seth’s post. I don’t think Hallmark carries a “Man, it sucks to hear that you had a seizure in the midst of everything else” card or I’m just looking in the wrong places. Since that route was unsuccessful, I have upped my prayers for you and am sending you all the healing vibes I can conjure up. Please let me know if I can do anything for you. xoxoxo, sas

    • Jessica

      Hi Stacy, I think you’re on to something with your new line of greeting cards! I think one of my single goals for you is just to get you to call me “Jessica.” Maybe even just now and then! :-D Love you hon

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