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…

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

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There is always a sad passage to every story

It has been difficult as of late. I’ve been writing but not here. Writing letters to my son, wishes for “if and only if” the time comes, letters to my husband, journals about my hopes for Milo. So, yes I’ve been writing. When the pain comes, doubt filters into my mind. So, I wonder if it is the end to my story nearing, the devil on my shoulder telling me to be angry, or just the damn radiation that is doing in my spirit. I hadn’t read much about how awful the radiation feels, except for the skin issues. The ironic part is that my skin is fine. Perhaps, it is the strength of the olive skin, the olive oil of which my mother swears keeps her youthful. My experience I guess, much like this whole cancer approach my body has taken, is a little bit different. Exhaustion doesn’t seem to be a strong enough word to describe the level of tired I feel. I cry a lot, and am in pain. I feel as if my insides are burning. I can hardly read my son his night night book because I am more tired than he is by 7pm. When my pain meds wear off, I have severe sadness, no energy, fevers and I can’t eat. I’m thinking this is the sad portion of my story yet the devil on my shoulder tells me it’s never ending.

My intentions are not to give up but the realities of my situation seem to be closing in and I do not want my son to see me so weak and tethered to the bed. I see Hank, my doctor, on Wednesday to discuss new options. Thankfully, the big brains are back in my corner as soon as they heard the ‘a-fortune-for’ drug is only working in some areas. There is hope, life isn’t perfect and things take time. I am grateful for all measures that are taken to sustain me, yet I want to live fully. I want to be able to walk the block to Healeo http://www.healeo.com/default.asp for my juices, have some energy to celebrate my husbands upcoming birthday, take better photos. I feel as if every time I write or speak of my hope it gets kicked to the curb. Shortly after I wrote, Such is Life, https://keepthecalm.wordpress.com/2012/11/08/such-is-life/ my life started to become more difficult to live. This is what makes me sad. With all of this calm fighting and staying the course, have I used up all of my energy? Slow and steady wins the race, and yet at a snail’s pace I barely make it around each corner these days. I won’t let my life come to this, I’m going to cross that finish line one way or another and make it to an age that my son will remember me, and remember me happy. We can create a full life, make it through unremarkable troubles, heartaches, and pain, and yet still have learned and enjoyed each passage. The sad passages give me the courage to move through the painful ones, and embrace the beautiful times. Gratitude always, I try.

At one point during this cancer battle, someone said to me that it is not uncommon for cancer patients to feel entitled. I balked and was angry at this statement and message. I don’t believe I have had an entitled day in my life. Have I said “I don’t deserve this”, why yes, but does this make me entitled? I’ve worked hard to be a loyal, honest and graceful woman. So, no, I don’t believe those of us going through cancer are, or feel entitled. We get to use the cancer card for sure, much like a handicap pass, or like the pregnant or old lady on the subway…I should get a seat before a healthy young person tweeting their complaints for the day. What I do seem to take issue with as a cancer patient are the people on the outside who have zero presence of the journey I am taking, those who are not mindful and undermine my decisions. The people that bitch every day on FB or Twitter about traffic or the weather, as if cold rain or snow in winter should be surprising, or the traffic on the LIE in NY at rush hour is a shocker. These things annoy the heck out of me. Should I waste my energy thinking of it, no, but it brings out the anger of which I must feel for my diagnosis. I have a new appreciation for the action of complaining. I have new advice to those experiencing cancer as a bystander to a loved one. Shut the fuck up. If you are not a close friend, don’t bitch to me about anything, at all. I have unbearable pain to shoulder and just enough energy to pretend I feel okay to my kid. I’m over listening to you people talking about your boss, the cold snap, or election results. Accept what is in front of you and take it like a man/woman. We all have a sad passage hiding within our stories, must we simplify them with the baseness of social media venting?Teaching courage and gratitude might be a better outlet. I request you fight for it, feel it and let go of the mundane blues. Perhaps this is me feeling entitled that some of you should change because of my journey. I am not sure, but with gratitude I try…can you?