Overachiever

Seth and I sat in the exam room, cried, and tried to comfort each other while my radiation oncologist confirmed my next treatment with Dr. Roush. It’s an extra call he didn’t have to make; but he offered so I would be assured that whole brain radiation (WBR) was the right course of action.

The scan result was a real let down; if it was 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 it.

Instead, the scan showed 5 new tumors which developed in the past month. It was devastating news. Absolutely devastating.

Now I’ll spin it for you like I did for my mom’s sake. (Please know she is forbidden from reading this blog and understands/respects that. I ask that you do the same should you discuss anything with her.) My mom knows that there was an increase in “brain lint” and that I have to undergo WBR. With everything she’s been through lately, I just didn’t have the heart to tell her that the “new things” are actually tumors. I will tell her once WBR has annihilated them!

The reason I gave myself a D and not an F on the scan is because some of my original five tumors shrank a little after being treated with the CyberKnife. The change in the others was unmeasurable, but CyberKnife radiation continues to work months after treatment. I consider this good news, as it means my tumors have responded to radiation.

I begin whole brain radiation next week. The total amount of radiation will be standard for my situation, but I will receive it in smaller doses over more days than is standard. (This will theoretically reduce day-to-day side effects as it allows my body to heal from a smaller dose each day.) I’m expecting 15 days of WBR: Monday through Friday for 3 weeks. Each session will last about 10 minutes, and I will likely lose all of my hair towards the middle or end of the process.

Some other likely, immediate side effects are nausea and vomiting, although I will take small doses of steroids on treatment days to minimize these. AUGH… More steroids. I’m told the tiny dose of dexamethasone (1 mg) will be a cake walk compared to the daily 12 mg I had post-seizure. I hope that’s true; having a fat head and no hair would be hideous. Other likely side effects include redness and sensitivity (similar to a sunburn) on my head and ears.

Long-term side effects pop-up over months and years and vary from patient to patient, so I’m trying not to focus on something that may not apply to me. If you’re curious, I’m sure the Internet can satiate your desire for knowledge. If nothing else, I know youth is on my side.

The next topic sent me over the edge. After I finish WBR, the plan is to start chemotherapy. I lost my composure and started sobbing aloud. Dr. Lamond began to back-peddle and explained that the plan might change. “We’ll just take it one step at a time,” he said. Between tears and gasps for breath I tried to explain how this last month (with no treatment) has been wonderful, despite the frequent headaches.

Yesterday was awful, indeed. In fact, much of the last week really sucked. This Thursday we meet with Dr. Lamond again to prepare for WBR. I need to sign consent forms, have a new mask made, have x-rays taken, and schedule my sessions.

I’m not ready for this. I thought I would have another two or three months before I needed WBR. But once again, my cancer is an overachiever. Everything seems more aggressive than is normal.

Seth asked for a prognosis, but, of course, there was no clear answer. Dr. Lamond explained that after WBR we would use CyberKnife to treat any new tumors. He also said it is key to do WBR while the tumors are small. Trying chemo first may allow them to grow to a size where a lot more radiation would be required to get rid of them. It is much more likely that everything will be wiped out if we do WBR now. That’s why I’m moving forward with this plan.

When I know my treatment schedule, I’ll share it here. Until then I’ll try to stave off the pop-up headaches, take many naps, and support my mom through the tough time she’s having too. It’s been a hell of a week, and something tells me a flip of the calendar will bring no relief.

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9 responses to “Overachiever

  • Anne Gallagher

    Thinking of you Jessica! I will be praying that you have the strength you need to get through this next step and that you have minimal side effects.

  • Craig

    I’ll wish for it going more easily than expected and with the best possible results. I’m sorry the news meant another battle so soon; we’re pretty much stuck with whatever lemons fate throws our way. It sounds like you’re getting as good treatment as one might anywhere.

    Best hopes,

    Craig
    in PA

    P.S. — I assume they had to rule out some degree of “hippocampus sparing” option for the WBR due to location of mets, but your doctors might not mind being asked about that to be sure.

    • Jessica

      Thanks for what you wrote. Good analogy – I’m being pummeled with lemons? 🙂

      Yes, we discussed hippocampus sparing. Unfortunately, 2 of the new tumors are IN my hippocampus, so that’s off the table.

  • Patrick

    Jessica my heart goes out to both of you! Finished 10 WBR treatments for brain mets in late May, was about to begin 3rd round of chemo this morning until a ‘buffalo hump’ joined the playing field … chemo suspended until CT Scan on Thursday to see what is actually happening players. … thank you for the heads up about how fast WBR can deteriorate from ‘brain lint to 5 tumors in a month .. as here I was feeling confidant with a MRI a week ago confirmed arrested metastasis only a week ago … talk about prompting me to vigilance … thank you and best of possible wishes to you

  • Sjoukje

    thinking of you Jessica! Sending you lots of love and strength. Wish there was more I could do…..
    We love you!
    xx Sjoukje, Benito, Charlie & Didi

  • Sabina

    Hello bold and beautiful* Jessica,

    *That’s the way I will always “see” you regardless of what is happening on the outside.

    The cancer is not an overachiever… YOU are. Don’t give it more credit than it deserves. So five tumors have snuck under the wall. Doesn’t mean the castle is taken. To arms then! (Think ‘The Lord of the Rings’ trilogy, vol 2 ‘The Two Towers’, the Battle of the Hornburg, a.k.a. Helm’s Deep)

    I hope my siege analogy doesn’t sound flippant. I have taken this news as seriously as any of your friends and have just spent some time on my knees praying for a successful outcome. The planned treatment sounds like it has been carefully worked out to give the best possible results with the least amount of discomfort to you. You are absolutely correct in not dwelling on possible side or long term effects. As we both know, the mind is a very powerful tool but it has no censor switch – best to focus only on the healing.

    Would you like to hear about a battle won? In my spare time, I like to sign online petitions about various causes. Some people think this is a waste of time but I have heard about enough victories to think otherwise. I actually keep a record of the victories to remind me of why I should continue to do this. Depending on the cause, parties involved and number of signatures gained, some petitions attract media attention, celebrity involvement, even questions being asked in the seat of government… any combination of which can lead to stunning victories which often take the petitioners themselves by surprise.

    Anyway, in the country that many people now think of as the setting for The Lord of the Rings – New Zealand – there is an area called Fiordland. Pristine wilderness; World Heritage listed. I can’t insert photos here but if you’d care to take a look at the following website it has some wonderful photos on the homepage: http://www.fiordland.org.nz

    Currently, this wilderness area is awkward although not too difficult to access – as wilderness areas should be! Unfortunately, private developers (with multi-million dollar backing) proposed blasting a road tunnel right through Fiordland National Park, with other tourist trappings such as cheap motels and fast food outlets to follow shortly thereafter no doubt. Groan. A member of a local community in Fiordland decided to start a petition asking the NZ Minister for Conservation to reject the plan. With 31,000+ signatures (including my little drop in the ocean) and a LOT of media attention, both local and overseas – the Minister decided to do the right thing and reject the plan. Yay!!!

    Hope you don’t mind me taking you on this little side trip. Perhaps my contribution to your wellbeing could be to tell you true stories of hope and wonder as and when I encounter them.

    Virtual kisses and fuzzy nose bonks from me and Honey-bunny

  • Debby

    Be sure to be on strong antiseizure meds several days before starting WBR

  • Patrick

    Jessica I was put on Keppra immediately upon discovering of brain mets in late April plus Decadron … I remain on Keppra

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