Reading, writing, and my life on drugs

My focus is stunted, and I am unsure if it is the chemo brain, parenting a two and some year old/or dealing with all of the planning that it takes to travel to LA monthly. Who knew healing would be just like being a personal assistant. Scheduling is half of my life, the other half is resting and recording my drug intakes. I’m not complaining, I’m merely explaining where the heck I’ve been. I miss writing and reading all of what you have to say, and on top of all of this my hard drive failed, there is a large possibility that I’ve lost a lot of writing, a lot of Milo’s baby photos and am working off of a slow iPad that has reached capacity. I’m in denial, so I was hiding. So there you have it….that is where I have been.

Here is my latest update for my scans from treatment on the UCLA study drug LY2835219:

So, recently I had the latest scans to determine if this course will be the correct way to continue. The scoop is that I am a ‘mixed bag’, so says both my doctors. Of course I do things the odd way, which means the study drug is working but it’s also a bit confusing. The soft tissue looks really good, both doctors (Seattle and LA) are very happy with this progress. In such a short time there is shrinkage already in the liver, stability and definite success with taking this study drug. The bones are the confusing part. There is some growth and honestly, many new fractures, but it is unclear if this growth is prior to the drug kicking in, and that perhaps the response is just slower in the bones. So, we decided to up the dosage as I am handling this treatment quite well (not as many side effects) and get some radiation done on the bad bone areas. This plan is a middle of the road approach, conservatively, we would change things but both doctors feel the promise is significant enough with the soft tissue that being a bit risky will be worth it and radiation will help the bones.

I am not sure if i mentioned that I have been physically out of commission, really. I can’t drive and my mobility is quite limited, so the hope is that this radiation in the problem areas will help fix that (my hip) and give this treatment more time to work in the bones. Hopefully the radiation won’t effect the way the study drug is working, the protocol seems to say that it should be fine, so prayers directed towards this success are welcome! Dr. Kaplan (my Seattle doctor) will monitor my progress before I return to the LA study team in mid-May. If all continues to go well, I will return to LA once a month for a doctor visit, tests, and drug retrieval. I’m gonna call it my LA drug run. It’s the truth, I can’t get it up here and it’s kind of funny to have to fly to California for drugs. It’s a movie in and of itself, especially as I have people driving me around too. This could be a reality show. Back and forth to LA from Seattle, a 38 year old mom heads to Santa Monica for her pills and can’t even drive herself! I wish I was in some kind of a limo, that would really look great. It was funny when my girlfriend was moving me back to Seattle after my long LA stint, and we had this bright red, crappy rental car, lost in LA and trying to go shopping while I was high on Dilaudid for the pain. Just call me Drugstore Cowgirl Part II. I bought a cute dress that day though, so did she… I think the stress of my pain was killing us both, and creating a scene. She documented it all quite well in photos though.

Now I am home, I return in two weeks, my birthday is next week and I’m not ready for it all. Yet, I am moving in extreme slow motion and it has nothing to do with my physical limitations. I am just slowly trying to wrap my brain around this lifestyle that I am leading. So much so, that it is difficult to articulate how I feel about this new process. I must say, I enjoyed hiding in LA by myself for awhile. I feel guilty as a wife and mother saying this, but I needed to be away, to hide and to be me, and I’m still not feeling ready to be apart of my Seattle world but I’m here. I am being radiated and drugged while people celebrate the Kentucky Derby, May Day, Cinco de Mayo, Greek Easter and my birthday and Mother’s Day, I remain in a haze with focus that is stunted…I’m looking for clarity, but it’s a bit difficult through the goggles of Oxycodone and a God knows what chemo cocktail, when really all I want is a glass of RosΓ© on this sunshiny day. Well, the drugs are working, hopefully, so I will not bitch anymore, I just need to find myself within this new phase. Each switch of the treatment seems to bring with it a whole new set of skills to assist in the adaptation of my life.

Pain Day…


Cheri Pearl Photography


22 comments on “Reading, writing, and my life on drugs

  1. You are beautiful πŸ™‚

  2. billgncs says:

    excellent picture πŸ™‚ —

    there are places that you can send a hard drive to to have the data recovered. Stinks when we lose pictures. I periodically burn a couple cd’s/dvd’s and set them aside.

    as always wishing you the best!

    • jelebelle says:

      Thanks Bill. It is a good reminder to back things up…I’m sending it off to get the retrieval done soon, wishes luck! Thanks for the reding and good thoughts. Best ..

  3. I had radiotherapy on my spine last summer, for breast cancer bone mets. Today I walked 5 miles along the coast without pain. Amazing! Last year this time I couldn’t even walk across the room. Here’s hoping it works as well for you.

    • jelebelle says:

      Oh my, I can’t tell you how this comment gives me hope. Thank you thank you! and cheers to you for being steadfast in your healing. Blessings and best in health to you.

  4. AnneMarie says:

    As always, sending you love….

    You ARE beautiful…..


  5. Jodi says:

    I also love this picture of you. Such a sweetness. I almost lost a hard drive last year … awful feeling. This place just south of SF saved nearly all of it for me. I can look up the name if you’re interested.

    Love you.

  6. exiledtyke says:

    Great news for your birthday. Really pleased for you.

  7. Your blog kicks ass—and so do you

  8. lmw says:

    I had to laugh when I pictured you in a limo, with your rich bitch glasses full of LA attitude on you drug run. πŸ™‚ I am thankful for spirit, the space to “get away” and your authenticity in the process. You are awesome. I am also thankful for this trial for you but so frustrated it is necessary. Sending the most positive thoughts I can your way. xx L

  9. I absolutely love that photo. You convey so much with that simple look.
    PS — if you’re Greek, how am I just now finding out about this??? (says the girl whose maiden name is Katapodis.)

  10. Dana (Hutzel) Judge says:

    You’re a gorgeous individual inside and out. Keep it positive! I am sending good thoughts and prayers your way on a daily basis! Happy Birthday and Happy Mother’s Day! xo

  11. Sheeva says:

    I love this picture of you- your eyes are speaking paragraphs! And hope you get to sip on some Rose this mother’s day xx

  12. dear drugstore cowgirl,

    you da’ bomb, baby girl! i love, love seeing your sweet face. and don’t you dare feel guilty about a single thing. as always, you are doing the best you can to adapt and find your way. where ever, and whoever you have to be to get to where you WANT to be is what i am BELIEVING for you, with all my heart. i hope you can feel enfolded and comforted by all the love i am sending your way.


    karen, TC

  13. Renee says:

    Hey Jen! You are in my thoughts all the time. Keep strong! Love you!

  14. AnneMarie says:

    Sending up smoke signals….. Checking in… letting you know I’m thinking of you….

    Much love your way…

  15. Audra says:

    Praying for you Jen.

Leave a Reply

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

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

Google+ photo

You are commenting using your Google+ 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 )


Connecting to %s