The rain of pain in LA (for just an hour)

4am, is it the rain in Los Angeles, pouring onto the stone patio outside of my window, which wakes me this hour, or is it the pain. This is a new ritual. The 4am snack and oxycodone alarm clock, though today I believe it was the soft rain, I woke up smiling as if I were home. I ate my savory cookie, took my pill and rather than dream sweet, I decide to lay awake and listen to the brief interludes that remind me of home. There is much reflection this week, here essentially by myself. Gorgeous friends helping when I need, but I am completely responsible for my own schedule, which is nice, but in all honesty, a bit wrapped up with fears. My independence, of which I wear so proudly, is a question with each step I take, each one that is a supreme ache. I’m slower than the 90 year old man walking with his cane next to me. It is interesting how this first week on my own, I feel the most physically weak and unable to do things without intense caution. There can be no. falling. down. This is a big deal for a young woman. This is the weakness I wanted to stave away. No walker, no wheelchair….not yet, please. I’m not ready to do that….but when will I be? This is the time when I say never. This, I am not accepting. Sorry cancer, you can’t take this, I want to bounce back and walk with ease. I’ll take the stylish vintage cane at a snails pace, that I can do…

Will these bones heal? As I have been awaiting four days now for a return phone call from the doctor, the big wonderments are starting to creep in, so when the drug really stabilizes things soon (with hopeful gasp) will my bones have time to heal? Can I gain some ground or did we lose too much in the waiting game of drug trials? This part of being on my ‘own’ here I hate….I hate not having the comfort zone of my doctor, my, beautiful nurses. They are an extension of my family that make it easier to heal. Here, not so much. The scattered way the office moves is frightening. My UCLA doctor will get an ear full tomorrow. Calling for four days over new pain without response should be unacceptable and certainly inhibits the positive state that I am working hard at maintaining. I’m bathed in my own light, and that of friends, I know this but there is a security blanket at work for me under the umbrella of a great oncology team. For me, I need to have that balance, the best of western medicine with my personal foundations in spiritual, thought and eastern styles. The balance can be easily tipped, especially without my weekly acupuncture and Healeo juice routine, but I make up for this with quiet meditation, breathing or just cleansing thoughts. I do not have control of the drug trail system yet. Yes, I said trail…I keep misspelling drug trial for trail and come to think that maybe that is a better way to look at things. It’s a trail that I am slowly wandering on, breathing in what comes my way….not trying it out, walking the path, I just wish those leading the walk would get a better receptionist.

The rain has subsided, back to bed…

42 steps and then some

Few and far between the writing occurs, yet it lies within my heart and I speak it with each night. Forty steps and then some, to my house. My next challenge has become chess moves in an endless game. How many steps to take before I live again, before I leave this earth? Tomorrow it will be forty two steps and then some, carefully maneuvered down to my home, my sanctuary in the trees. With cracked hip, I will descend and ascend so I can keep my spirits in tact, and not feel as displaced physically as I can be emotionally.

Within this past week, we heard an array of news. CAT scans, bone scans, an MRI and some fluids, I am mending and breaking at the same time. The A-fortune-for drug is working! It has stabilized the cancer, the bones, and shown even some healing signs in the liver, and disappearance of those new spots that appeared in the lungs in early September. Though a long way from the finish line, it appears we are gaining back ground. However, the bones did not escape damage. I have a crack in the hip that has me immobilized until we can repair it, hopefully soon and with minimal surgery. I have fractures in the spine that unnerve me and it is true that we have forty two steps down to the entry of our house, with further steps up to my son’s bedroom. Obstacles, setbacks, and yet steps that go down, also seem to go up.

My body is aged and perhaps I will not ride a horse through the hills of Spain again, but I will see the New Year emerge with brighter tomorrows with the help of a little oblong pill that I sing to, four days a week. It’s my edge in the chess game. My voice will encourage the A-fortune-for to mend, even as my will was questioned, as I digested the news of my cracked out hip with a gulp of singeing words like “we can’t catch a break”, I bowed to the setback and summoned a chord of some bad 70’s music and remembrance of a walk in the moonlight, singing with friends just days before this news. One step ahead, one song for the soul, one step down to the house and one step up towards my sweet son’s bedroom. Forty two steps and then some towards the road to healing.

I’m gonna knock you out….

Mama said knock you out…don’t you ever stare….just call me Cassius…. (By LL Cool J)

Okay so I’m trying not to let the electric Kool Aid knock me out, but man I’m falling hard in the ring, and it’s all week long. I think it’s time for another blood transfusion. It is so difficult to not be able to help at all with Milo, or even do laundry. All I can do is sit and laugh at my baby, which I know should be enough…but I’m not taking this lying down! Just call me Cassius….

(Hopefully more later my sweets. I adore all of your comments and support and wanted to update a little. Be back soon.)

Another day in the life of the moving cancer cell

Oh for the love of God and Goddesses everywhere….

I really don’t want this post to be snarky, why me or deeply sorrowful but I’m feeling a bit of all three among a thousand other emotions. The shit has hit the cancer fan. I’m just going to lay out the update in a list form and then move on to my real writing. I want to take a moment to acknowledge with great gratitude all of you who read and support and have showered me with love…..

Here goes:
Cancer has spread in the bones, and the existing tumors in bones have grown (sucky and painful).
It shrunk in the liver (okay, that is good).
My long term prognosis of shooting for “decades” is no longer realistic (I call bullshit).
Worst case scenario is really bad (not telling, as it’s not gonna happen).
I begin my new treatment of AC (my Adriatic C) on Monday.
I started Cytoxin (cy-youngin’) on Tuesday.
Sent all of my info to Dr. Larry Norton at Sloan-Kettering.
Sending my info off to some other great contacts, soon I hope.
I’m really pissed off that I probably won’t be able to go to New Mexico in September for a getaway with the hubby as planned.

Okay, now that we have that off of my chest….

Nestled here in the trees of the great northwest with family and friends is not a bad place to be in summer. When mortality is questioned, I think we have these expectations of frantic thoughts about how much we need to see and do in life before the end. Not so for me, maybe because I refuse to accept the end is a close foe. Yes, I want to make it to Italy and write a book but I’m content laughing at Milo and having dear friends visit. I also seem to be thinking about all of the piles of shit in my house. I really want the clutter gone, it is too much and as I rest and stare out at the view, I don’t want to think about piles. I’m a silly woman at times. I’ve never seen London or the Grand Canyon and what I’m thinking about at the edge of a great mortal moment is my unorganized life because it usually is so tight. Lessons. Release expectations and thoughts of ridiculousness and continue to look upon the beauty of this green earth and the faces that make existing… all of our “Grand Canyon” moments.

I shall land in Italy the summer of 2014. I will get to New Mexico. I will see Milo turn 5 and then 10. I will continue to heal and move this cancer into remission.

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.

These are the hugs that keep a mamma fighting…

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

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.

Chief and my 2012 self: words of explanation

I was inspired by all of the recent blogging challenge posts or perhaps, posts of solidarity, especially from Renn at The Big C and Me, she had a great request. So I thought I would try my hand at this form of inspiration. You onboard?

Here is one for my lovely readers (the few that are out there;) post a photo or self portrait or other form of visual art (if you are not comfortable sharing your visage with us) of yourself that describes who you have been within the last six months.

It was Carol’s self portrait post that prompted me to add a recent photo of myself taken by my girlfriend Cheri Pearl. It isn’t a self portrait though maybe a bit of a collaboration. Cheri has helped me document some of this bullshit cancer process, and I am drawn to the idea of the back of my head as a reflection of who I have been during the past six months of my cancer process. I had been distant, pain filled (I think you can see how my neck is a bit wonky), sorrowful, and not wanting to face life as head on as I would have normally. Yet I look towards Chief (our bison skull) with hope and faith that there is someone keeping watch over me, us. I’ve sprung back to life within the last month or so, maybe I’ll have to add another photo soon of this forward movement stage.

Chief and my 2012 self: photo

 

Photo by Cheri Pearl: http://www.cheripearl.com/blog/

i’m floating….

Seriously, I feel like I am about to float away.  I mean, how many more liters of fluids can they give a girl to flush this cold away. When I asked if my blood pressure was okay today, my doc actually said “if you are a mosquito it would be fine”.  How special.  He is really a funny and caring guy.

What the heckfire, I say! I am so over this rash of annoying head colds, oh yeah and over the cancer bits too.  So can they float those things away and not my brain?  Posts are a bit fewer because, well… I like to actually write some substance and not just be a complainy cancer bitch, I think I’m supposed to say Vixen, but I’m feeling more like a bitch this week.  Stay tuned for clearer thoughts when the sniffles fade.

Nitenite loves.

For fun photos of mosquitos with normal blood pressure, check it:  http://intellectualventureslab.com/?p=653

 

 

They should call this “cancer-con”…

The past two weeks I have had odd but quiet thoughts on this whole cancer thing roaming within my head, my body. I have wanted to walk slowly amongst the living in solitude and anonymity, just wanting to enjoy people watching, slowly re-enter into feeling better again….almost like my old self. It is difficult to do this when constantly either at a doctor appointment or surrounded by lovely people assisting me with the normalcies of life. It is really difficult to do this while wearing a bald badge that has people looking at you with an ‘oh, dear….isn’t she too young’ look on their face. My life is micro-managed by other people and it is exhausting. Sometimes I really want to get in the car and drive alone for a long weekend somewhere crazy. Maybe I should do that…like breaking plates, just rip the band aid off and live the way I need to right now. Though, I guess I couldn’t escape those over sympathetic smiles from strangers in the drugstore.

This melancholy state that I had been having, became darkly comical as within one week, three checkers at different grocery type stores all asked me the same question to start. I was beginning to feel I was at a comic-con convention, everyone lining up to share their fascinations of characters on brightly colored head scarves. Somebody should make a cancer comic book.

Here is exchange #1 (while lovely she wanted to share, it was a little much at 10:00 in the morning on a gloomy day).

“I like the way you wear your scarf” heavy pause
“are you in treatment?, she quickly adds “I was a cancer patient too, breast cancer right? Was it hr2+? estrogen receptor something or other, did you have a lump or mastectomy?
and on and on and on, she went
eye roll and heavy thoughts now emerge, quietly I responded…
“well, mine has metasticzed into a rare form of stage four neuro-endocrin cancer along with the BC. I try not to remember the details while I’m shopping. (I just wanted to buy my pillow and get the hell out there)

This disjointed dialogue continued. She was a sweet survivor who wanted to relate, perhaps she needed something, or someone, though she wasn’t very mindful of the place that I was in, a non-sharing, quiet space. I think it is important to be present when we have this kind of solidarity. We don’t always need to share, we can just “be” with each other, and learn from the simple nod, or the smile or shrug. Or the first simple phrase, “I like how you wear your scarf”.
This said enough for me on that day. Encounter # 2 was similar, though not as obnoxious with the stats and science words of which my chemo brain couldn’t quite remember.

I began my comic-con, cancer-con parallel due to the third encounter. She was young, sweet, and a 13 year Leukemia survivor. She did start with the same scarf line, literally the same exact line. I’ve never been to a comic con, but I imagine when you arrive dressed in costume to a booth (much like my checker aisle), the same words are spoken…I like how you wear, yaddayadda. Scarf, sword, glitter tights, wigs, it’s all the same when people have someone to relate to, up close and personal. Somehow relating to others in a situation seems to make the freak show of our crazed existence seem more bearable, seems to make the cancer a bit less, well, less deadly. If so and so survived then I will too…

We all have stories to tell and should share them….this is what I am doing here; I do enjoy the dialogue, it truly helps, but really, do I need to air them at the Fred Meyer or Whole Foods check out stand with the lady behind me counting coupons and buying toilet paper waiting as we dish on which treatments are easiest? Hell, once I made the salesgirl in Barney’s breakdown in tears, with my baby in the stroller…I thought the whole CO-OP department was about to ball. At least at a convention we might know what we are getting into, stand in line in your best scarf to talk about cancer, and at least it might be a bit darkly comical. I try to find the humor and the visual of us cancer patients at a comic-con sounds brilliant to me.