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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Going back to Cali., Cali., Cali….. (Part one)

Though not far, it seems forever and a day away from my son, my family. Los Angeles in February is not a bad place to be, especially coming from the Pacific Northwest…80 degree days in Lalaland. And this is where I will be in my attempt, no quest, to heal. I hit the high road, took this chemo jail on the freeway, headed south towards remission, or control of this fast moving cancer. We are looking inside the houses of another doctor and a new treatment, we have a revitalized hope.

My amazing doctor at home, amongst amazing assistance at home, found this trial. Found me a drug trial, another try. They are all trials though. Everything is a chance, really. Drugs that are supposed to work don’t, and may the chances be the cure to an easier life, physically. I have a great doctor here at UCLA. The drug trial world is a bit different than ‘normal’ chemo jail. Though the house has less comforts, more chaos, more advanced patients in my age group. We are all underfoot, and everyone seems to be on a different path with their treatment. It is rigid and there are less comforts, such as a blanket warmer and HIPA laws seem to be thrown out of the window. My hope is that they are just spending more money on the drug and trial than the little comforts. My hope is that I win this leg of the race and can donate into trials to help those of us in pain have an easier time, and experience being here.

I had my first dose yesterday of this bright blue pill titled, LY2835219. Hmm what should we call it…I wonder, so I ring my partner crime in this sarcastic naming process… Some phone # songs from the late 80s came up, but I settled upon Lenny’s Little Blue Pill (Lenny being one of my million nicknames). It has taken a solid five weeks without any form of treatment to get me here, so I’ve risked some serious tumor growth which occurred, yet finally we began full schedule on the drug protocol and now I’m in such pain, I can’t even think about what city I am living, the pain is so strong. I am displaced yet feel comfortable where I am, steeped in the hopes of a brand new little blue pill. Though I ask the question, how can a mother live so far from her child, especially with my fears of longevity taking hold. Life is a series of decisions that challenge one’s soul. The choices we make can inflict either chaos and sorrow or hope and healing. I’m figuring ‘Going back to Cali.’ and LL Cool J has been part of my world since high school, I’m not giving up on taking life’s chances now. Never look over your shoulder as your path takes you forward, for it will never continue to move if you hold your neck sideways for the ride. Be confident in your choices. This is what I was told by an old sage of New York city’s east village. I still believe him, I just didn’t know the wisdom would take so long to hatch.

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I Fall Down

At each visit with my oncologist, the same questions are asked, every Monday. One of these questions: “did you fall down this week?”

In the beginning, I had made some joke and laughed it off, looking at the nurse as if she was crazy. And then at one of my worst moments, feeling ill and depleted, I fell down. We had just installed a new gate as the baby was about to start walking any day. Of course the first moment, tired and dazed, I tripped over the little lip of the gate, slammed into the wall and hit the carpet face first, giving myself a huge black eye. With my olive skin, bald head and tattoo on my arm I felt like I now looked like one punked out bitch of a hoodlami (wanna be hoodlum). oddly enough, this helped my spirit and sense of humor. The following Monday they really didn’t have to ask by the look of me, though I can imagine what people were thinking with the big shiner on my face. Yesssss….I fell down.

A month or so later, it was a rare but gorgeous wintery day, so the family went for a stroll and lunch in the Pike Place Market. I was tired but really wanted to rally, get out of the house and be a ‘real’ person. Walking down the street, I tripped and completely fell on absolutely nothing, skinned my hand and almost twisted an ankle. This time I started to cry. I’m 37 years old and I can’t even walk down the effin’ street and have a nice day with my family. It was a rare moment of feeling sorry for myself. I was also angry. I always have been complimented on my grace. My grace is waning, and I wonder if this is karma for critiquing a certain someone and comparing myself as the better gal in whatever altercation that occurred. I’m angry that I feel cancer is karmic because I had anger about something that I had every right on this earth to be aggressive about. I digress. Gracefully Jenny fell down, again.

About three weeks ago, after tucking my son in for the night, I descend his stairs to our main floor. His room is a cute attic style room, so the stairwell is narrow and more steep than the average. Everyone complains about them, but we really can’t rebuild a stairwell right now. Anyway, I was, again, tired, because that has become my middle name. I grabbed for something, was wearing those stupid, slippery Tom’s shoes and just slipped on my butt down the entire staircase. Boomboomboom. The tumors are in my spine (along with a smattering of other bone locations and my liver) I, of course, slide on my tail bone while grazing my spine on the edge of the wooden steps. I picked my self up off of the floor, crawled to the carpet and laid there in pain calling out for the hubby, as the baby awoke to my mess crying. A scene. Depressing and silly and painful and aggravating. I am not who I used to be. My hubby calmed the baby down, as I lay on the floor in silent panic that I had done some real damage. I’m fine. In fact, the doc said it was a good sign of how well I am doing, that nothing serious occurred. I have a funny way of working out the issues.

The following week, my son was having a hard time with his wake up. He rarely fussed but he was just all sorts of cranky. It cheers him up to go outside, so in the rain we went, I donned my rubber boots and we set out to ring the wind chime and look at the trees. He relaxed in my arms so sweetly and we kept walking, and for a minute I had forgotten that I had cancer until I slipped on a mossy step and went down hard again on my tailbone with Milo in my arms. He barely hit his bum on the ground and we were fine, but he was so scared and I just hugged him tight and remembered that scene from Steel Magnolias when Julia Roberts’ character is holding her son and passes out. I hate this…because now, I fall down. A lot and it’s breaking me more each time, breaking my heart eachtime. I don’t want to be afraid of holding my son in the sweet smell of spring rain. I am now 38…this isn’t how this is supposed to be, not for me.

not falling down

not falling down

Yet, I am able to laugh at these moments of clumsiness, chemo brain fog, imbalance, and it is a bit funny. It’s ridiculous really but it’s also a bit frightening. I have to report back to the doc that I continue to fall down, they just look at me and shake their head, telling me to be careful. I make excuses, the moss, the Tom’s shoes, the gate, but really it is the chemo. I guess I just need to break those falls and continue to rise from the rubble of cancer.