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 Rosé 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…

20130504-234703.jpg

Cheri Pearl Photography http://www.cheripearl.com/blog/

Advertisements

Oh the irony….

I’ve written that this is the year mark of the return of the dreaded “c” yet boasted about how I was feeling better, filled with hope, keeping things moving towards goals. Yet, from one week to the next, I went from going to soccer matches and watching fireworks to feeling gutted. 103.2 fevers, pains so unbearable, and sorrow, just sorrow tearing down my face. I feel as I did one year ago when I was admitted to the hospital. What the heck fire happened from one week to the next?! Scans showed no signs of infections, allergies, virus’ and showed the liver tumors had shrunk a bit on Navy Beans. And then more tests….the next day, the bone scans showed growth in the tumors in the spine and the ribs. I do not understand cancer at all. I’m positive, feel boosted by the smiles of my little one, prayerful, meditate, sort of eat better, etc etc., I’m fighting a good fight and was supposed to be on the right track. I’m pissed. I’m pissed that I am in so much pain I can’t even carry a purse or put a cute outfit on. I need to send friends on the hunt for decent maxi dresses that don’t irritate the pain ridden areas. You know its bad when wearing clothing hurts. How did the change of week do this?

My energy is fading so I will keep this update short. I have a Monday doc appointment in which I assume we begin a new treatment. If Navy Beans is helping the liver….should we stick with it and add on a better bone drug? Is it time to go back to NY and see the MSK doctor again?

Thankfully my close friend is here to help with my son, who has been so sweet. At 18 months old, he just walks up to me and gives me hugs every now and again. I love being his mother and need to see his life unfold.

Keep you all posted…..thanks in advance for the luvin’ I might not have the energy to reply to comments, but feel your strength already.

20120714-114409.jpg
These are the hugs that keep a mamma fighting…

The 8th of May

It’s already my birthday, and I feel blessed to have one.

Though the thoughts of how many more I will have loom within the celebration of me and my day. I had a lovely time with my family. My sweet son’s voice could be heard by many, singing mama, maamaama, mama, beaming with hugs and love. Watching him simply be, is the perfect gift. And then the mind wanders of how long I get to watch him grow and be? I remind myself that I will have a long life with him, experience all of his adventures, and share smiles.

I briefly think, can I not just have a clear May 8th? A thought free of cancer and my longevity? It was a beautiful day, I have so much love around me and I want to enjoy it without furrowed brow and worry. So, I ordered bonbons by the pool in the hot sunshine of our Hawaiin vacation, knowing that amongst all of this cancer crap, life is still beautiful.

I must remember gratitude. I must remember my smiles and breathe my furrows away.

20120508-215108.jpg

head, shoulders, knees, & toes….

Tingling toes, frozen fingers, blurry head and shoulder so sore. I seem to relate my ailments to the little diddy I sing to my kid everyday. He grabs my toes when I start the song which makes me smile, and has my toes trying to overcome the numbness. Neuropathy sucks. But most of these chemo, cancer side effects suck. My hands, though, are just killing me, and it really has made me mindful of those suffering with arthritis or the like.

This little diddy has me thinking about my body in general. I am 37 years old and worry that this cancer bout has/will age me by ten years at least. I was always fit, happy with my body, never really struggled with self-esteem in this department even when I have had issues fitting into my skinny jeans. The vanity of this upsets me, because as I have said, my longevity means so much more, yet I am just not quite ready to feel almost fifty at my age. I thought I had a few more bikini years in me, even post baby. Okay okay, I know what I sound like and so what. (Even after my scar post, I guess we get to have ups & downs.) I have worked hard at keeping trim, keeping my outer side pleasant to hopefully match my inner side, so I feel I get to worry a little bit about what the hell I will look like when I am done being a cancer patient. The Gods willing…

I have questions about this head, shoulders, knees, and toes:

Will my spine be okay, or will I be hunched over when I age? Can I ever get a pedicure again?! Will my liver ever stop pushing my other organs around like a bully at the playground? Will my eyelashes return to their full glory? Isn’t it enough to be lopsided, one boob and all? And the one boob, what shall I do, can I ever get reconstruction? And, I am super worried about my bones. How will they weather this storm? Will my posture be compromised, can I ever practice yoga again? Or Kung Fu, will I be able to keep kicking cancer away with Shaolin? Or will I be limited in my activities? Will my heart be weakened, can I kick a soccer ball around when my kid gets old enough? What will be my post cancer me?

Perhaps I should just focus on having a post cancer me, head, shoulder, knees, toes and all.

20120328-115410.jpg