Life's a Bowl of Cherries

When I woke up this morning I immediately started writing in my head. I often do, and still I find myself  having not typed a word as we approach late afternoon. This has nothing to do with “The Last Supper” or anything I intended to write, but it an observation worth noting. I digress…can one do that in the first paragraph? Perhaps more accurately I avoid.

I avoid the fact that I am having major surgery tomorrow and I am just a bit nervous. I avoid telling you that this Queen of optimism is just a teeny, tiny, wee bit scared it won’t work. I avoid telling you that living with the kind of pain I have experienced these past few weeks is not an option. What does that mean? I am not sure and I don’t want to know, so why don’t I tell you what I do know.

I can’t remember any of the profound wisdom I was writing in my brain this morning. 80 mgs. of  Oxycontin, and various other pain meds will do that. My long term memory is still good, short term not so much. Hmm sounds like dementia. I have been pacing around much of the day wondering how to prepare, and realize there is not much to do. it is not like going on vacation even if I am away four days. No bags to pack, no pet sitter to call…

Too much time on my hands and so I think. What will life be like with all that metal in my back? Will I be have to use a bed pan? Will Steve be able to sneak me decent food? I haven’t been in a hospital for this long since I was 20 and in a severe car accident. Ah, will I get out early, or will I get stuck for the weekend because they don’t discharge on weekends. Is that weekend thing true, or did I see it on General Hospital?

You see how it is. No wonder I can’t remember my brilliant head writing. Perhaps I should just stick with some facts.

I am having a spinal fusion which is major, but not unusual surgery. The severity of my pain got it pushed up a week which has made things a bit hectic. Pre surgical testing and whatnot that require a bit of driving around and waiting. Illness, or rather getting treated for wellness, requires a lot of waiting. I am waiting right now for the call with instructions and time to arrive tomorrow. The phone just rang…

6 am.! I am to be at Albert Einstein Hospital at 6am on Wednesday May 9th with no jewelry or valuables. OK then, anything else I need to say? Of course I am beyond grateful for my incredible husband Steve and his equally amazing Mother Nancy who will be with me and waiting as one does in these situations. I am likewise grateful for the amazing support I have here and in my “real” life” which sounds wrong as you are all real.

Now as for The Last Supper I am going to shower and dress and go prepare for it. I call it the last supper not because I have ant notion of dying or getting crucified, but because it will be my last meal of choice till they let me out. I’m sure you’ve heard about hospital food if you haven’t experienced it. It’s all true.

Tonight I will allow that incredible husband Steve to help me cook. He begged me to show him some things before I left so he could feed me while I recuperate. I stubbornly refused not because I didn’t want him helping, rather because (as I later figured out) I had been cheated out of doing so many things I used to do I didn’t want to let go of what I still could. Becoming disabled suddenly is a bitch. I guess it is usually suddenly right?

There I go again…my brain can’t remember but it sure can wander. Here I go…

From the Heart,

I told you I’d be back! Later than expected but hey, that’s how it is here. Hi-jacked by phone calls e-mails etc. plus I feel pretty good today so I am able to do a few exciting things like laundry! My life is special.

OK I said I was going to give you a medical update and so I will. Since I last wrote about this I have had a bone scan, a CT scan, blood-work, and seen the Oncologist and Pain Management Doctor. Is there a name for that, Pain Management Doctor? The good news is I am feeling somewhat relieved. The bad news is I don’t have much to report. Well, maybe that is good news too. See what you think.

The day of the scans was interesting. I had a CTscan previously so I knew about the delicious pina colada flavored barium drink. It tastes similar to pina colada to me anyhow, pina colada with liquid chalk to replace rum. Bad, but not as bad as I’ve heard some say. Just get it cold and drink it fast! Then repeat a few hours later with nothing else to eat or drink between. Do this in a bathroom stall at the hospital if you can. It makes it worse to experience, but easier to get down fast

On to the nurse that fits you with an IV so she can inject you with more radiation! The bone scan needs tracers for contrast to see what they need to see, cancer. Then go get your CT scan. Here you will be injected with a dye so they can see what they need to see. The scan is pretty short and makes little noise. Not at all like an MRI, my personal least favorite. The IV comes out, no more injections at this location. Now go take a 90 minute break, which I did in the glamorous hospital cafeteria. Actually it wasn’t that bad. I had a Caesar Salad and water. Lots of water to wash the stuff through?

The bone scan itself is again, not so bad. It is so quiet I was not aware they were doing it until the tech said half way done. I thought they just left me lying there and was quite happy when I heard that. DONE, and it’s only 1:30 pm (I arrived at 8:30).

With half the day left I headed straight to diagnostic center for some blood work. I have to say if you ever need blood drawn at Quest Diagnostics in Lansdale PA ask for Andre. This man can draw blood without you feeling a thing. Really! He says the ritual, you’re gonna feel a pinch but you never do. It is truly amazing. I needed some of that, need more of that actually.

Next step, go home and relax the next day, and then head on over to the cancer center to see what they saw. From here it is a bit strange, although I am assured it is not.

Oh crap, so much for feeling good today. I cannot sit here any longer. I am off to find a different chair and will be back to finish. As I said to a friend earlier today, it is different day to day, hour to hour. I can never be sure I can do what I say I’ll do.

Back again! I took a drive to buy white miso. Don’t ask. My car has super comfortable heated seats! A huge help. Still not feeling great, but better. Let’s get this done.

I went to the Cancer Center alone to see the Pain Management team. That consisted of a nurse that asked me a lot of questions about my pain, and my medication history. Then the Doctor came in to talk about what to do. He decided that a drug to address nerve pain specifically was best. The drug is called Neurontin, and is used for a variety of things, primarily epilepsy? Anyhow it is a drug must wean on and off of so I know it is hard core. Knowing it is only weeks till my surgery I figured I better try it. I don’t think I could stand the level of pain I had for even three weeks. So far I have some relief, not quite enough but I am not at full dose yet. We shall see. I am concerned about what will happen after surgery trying to get off of all these drugs.

Good news for the intermission. I got a Nurse Navigator! Thanks to my cousin Doug who is in the medical profession I became aware of such a thing. Doug is currently deployed as a flight nurse in the Air Force and was worried about all my trouble, so he had a nurse navigator he knows call me and explain what they do. Thanks Doug!!! Apparently different places have different descriptions of what a NN does, because this woman is far more attentive than the one at Fox Chase where I go. I guess you could say I have two NN’s because she has asked to follow up on me I am fortunate in so many ways. No sarcasm intended.

Now the Oncologist where Steve met me. Only about a half hour to kill here. Bad news, good news, no news? I’m still not sure but leaning towards no news. The bone scan is apparently the scan of choice for my kind of cancer. Makes me feel much better about having moved to Fox Chase, as Grand View where I started did the PET Scan. My bone scan showed lesions in my liver that were only unidentifiable spots on the PET scan. Also increased size of spine lesions. What the Doctors told me is they can’t make a diagnosis because comparing a PET scan and a bone scan is like comparing apples and oranges. Finally she gets to the apples and oranges! So. we will wait and do another bone scan two months making the first one the base line for all future treatment. Whew, that was a lot of typing for a non typist. There you have it we are waiting. Dr. Goldstein my main Oncologist told me to just focus on getting through my surgery and being pain free. Sounds like a plan.

Oh crap I almost forgot, my big plan! I’ll have post again tomorrow. Just know it has to do with earning what I need for that lap top. And I posted the same picture today, but not the same. Tell me what is different?

Now to figure out why I needed that miso…

From the Heart

]]> http://www.arthopetruth.com/2012/05/01/apples-oranges-its-not-think/feed/ 5 http://www.arthopetruth.com/2012/04/30/apples-oranges-so-goes/ http://www.arthopetruth.com/2012/04/30/apples-oranges-so-goes/#comments Mon, 30 Apr 2012 19:33:50 +0000 pirategirl http://www.arthopetruth.com/?p=537

Psych! Do they still say that? Well what I mean is this is not really the blog post that goes with that title or picture. I’ll post that tomorrow. The thing is I have been writing far to little, for me. Lack of productivity gets me down. Please don’t tell me I’m being hard on myself. That’s not how it is, I just need to create and produce to keep my brain functioning. Too little and I start to slip into the abyss of, nothing matters. I need to get on a regular schedule again, which was never very regular for me, but better than once a weekish.

So here I am to tell you, and me, that we will be stepping it up! I have surgery in 16 days and I want to have a pattern established so I can get back to work as quickly and easily as possible. I will be bed ridden for a brief time, and mostly chair ridden for a while I think, but my brain and typing instruments should work. I can do that from bed, sort of. The thing is my lap top is big, super heavy and quirky, including the keyboard doesn’t work. So, I am praying for a new one to fall from the sky, literally! Well, I am, but I am also thinking of a few ways to earn the money ASAP. Stay tuned for medical updates and sale news! Tomorrow!!!

From the Heart,

But then I look at the sun shining through a prism in the window, and my cat splayed on the carpet in a rainbow, and I realize I must.

On Monday we went to see Dr. Handal the Orthopaedic Surgeon. Talk about a bad day. I was nervous about the appointment and what my scans would reveal. In my distress I managed to leave said scans at home and completely forgot I needed a referral to see this Doctor. Fortunately they were really kind about it and Steve went back home for the scans while I managed to get the referral during lunch hour. Thank you Dr. O’Connor!

I will be having a spinal fusion on May 16th which is the soonest they could schedule. Given the pain I am having that sounds like a life time but…

This is a more complicated surgery than we realized involving two surgeons. Dr. Handal will need the assistance of a Vascular Surgeon (Dr. Whitenack I think) to navigate my “wiring” and get at my spine from the front. They do the removal of discs and vertebra, and placement of the cage (vertebra replacement) from the front. Then they will flip me over and insert “nuts and bolts” to tie me together from the back. Kind of freaks me out, and also makes me curious. I did not realize how little I know about how I am put together. Now it is just a matter of getting through another month.

Tuesday I had some relief from pain and still the day got away from me. I am scheduled to have an art show in May and some friends (forgive me not naming names for now, you know who you are!)  are arranging a fund raiser around that to help with my medical expenses. Now I will be in the hospital when the fund raiser was scheduled, and I am not feeling like I can manage the show at this point.

I feel like I am letting people down even though this is all supposed to be for my benefit. Letting people down stresses me. Stress exacerbates pain.

Yesterday, Wednesday, the pain was off the charts again. I did not manage to do anything and by afternoon I had a call in to Fox Chase. They asked me to come in to see someone which I took as a good sign. Someone to help me! I had to wait longer than I’d like but then a very loud nurse called my name. She cracked me up because the first thing she said after yelling my name was, “wow that was really loud”. Laughing is good!

After answering a lot of questions, and getting examined I got told to go home and take more Oxycontin and Dilaudid. I was hoping for a different drug, but they did at least recommend a sane increase schedule.

My Oncologist had me increase from 2o to 80 mgs of Oxy in 2 days. That just made me sick.

So here we are at today. A new day all ready to take it on with a small increase in pain meds and a revitalized attitude! I had my friend Lisa over this morning to Reiki me and make me laugh. A good way to begin. I did notice I had a twinge in my right shoulder where I must have slept funny, but my other pain was not bad.

When Lisa left I decided to go ahead and tackle the worst task of the day and called to Fox Chase for the third time to get a referral for the bone scan I need to have. I finally got someone to talk to me (left messages previously) and I was told they can’t give me a referral. The woman at FC that gave me a pre cert number for my CT scan told me they could. OK. I am cool.

Next I called to schedule the scans. I do not know what was going on there, but it was chaos with children yelling in the background. Before I got done with the deal I had a full blown muscle spasm going in between my shoulder blades.

AYFKM!!!

Seriously, I am not a high stress kind of girl, but this pain stuff in combination with medical care and insurance is really testing me. The thing is my first thought was OMG I broke another bone. That creates some stress too I must say. Every time I go to make a major move, like stand up, I am waiting for something to snap. I guess that qualifies as a stressor too, ha!

Still the day is not yet done. I have found the act of writing this post has relaxed me and my back feels better. When I finish here I am going to go soak up some sun, and then I have in mind an avocado, kale wrapalicious dinner in mind. The sun has shifted and the rainbows are now scattered across the bed telling me it is time to pack it in. Tomorrow will be a new day, and I will give it my best considering it involves a ten am Endodontist appt.

OH NO!

Seriously, the dentist can’t make me flinch after all this. The day will bring what it does, and I will remember to adjust the sails accordingly.

From the Heart,

The fear of Friday the 13th has been called friggatriskaidekaphobia (Frigga being the name of the Norse goddess for whom “Friday” is named and triskaidekaphobia meaning fear of the number thirteen). ~ Wiki

I am not superstitious in that way, but I can say that this Friday the 13th has not been very good to me. Nothing terrible happened, just confusion and the relentless pain issue. It really does wear on you and my normal disposition suffers.  I have been crabby and mean, which makes me unhappy with myself and thus crabbier. Poor Steve, I am sorry.

Friggatriskaidekaphobi indeed!

So, I thought I’d let you know it is not all sunshine and unicorns for me every day, and update my “situation”. I had x-rays and a CT scan yesterday to see what my spine is doing and make a plan for surgery. What you see above is from an x-ray I had my way with. If you look at where the spine begins to curve on the lower left you will see what remains of my L5. No wonder I hurt. I don’t want to talk about the dark spots in the two above. I have looked at the CT scan as well, but not being a doctor I don’t want to make any assumptions. Suffice it to say it looks bad. This also contributes to my less than sunny mood. I am despite my inherent optimism, scared and unsure. I am not ready to die, and death does cross ones mind in this situation. So, I will try as best I can to enjoy the nice weather, have a pleasant weekend, and hold onto my hat (where did that come from till Monday when we go back to see the surgeon. We will likely schedule surgery then.

In the meantime let me share something more pleasant to read with you. My friend Cindy is on the cure end of a breast cancer diagnosis last year. When she was struggling some kind people helped her out with a fund raiser, and she wants to pay it forward to me. I am mildly uncomfortable with it, but am practicing receiving and saying yes, so… Here is a link to what Cindy wrote about it and me! Reminds me I should read it again as it is very nice and makes me sound Mahvelous!

Happy Friggatriskaidekaphobi Day!

From the Heart,

I have been bent and broken, but — I hope — into a better shape.

~Estella from Dicken’s Great Expectations

I wish I were as hopeful as Estella, but today my normal optimism is suffering. The past week, or is it two weeks have been very difficult. Pain wears you down it does. Still is am not without any hope, or I would not be here typing an update.

Actually the news is good considering. My situation is grim , and fixable.  I will never be like I was, but perhaps the new me will be a better shape, physically, then mentally and spiritually. I think so. If you haven’t heard my spine is a wreck, literally bent and broken.

A few weeks ago something shifted and my pain began to increase. The oncologist told me to take more pain meds. The pain continued to get worse and the increase did not help. Take even more he said. I tried that once, and not only did it not help, it made me feel like crap on top of the pain. Finally the oncologist, the same one that told me I did not need to see an orthopaedic specialist, sent me to an interventional radiologist. Too little too late. Pain continues.

The oncologist must have gotten a clue when the interventional radiologist told him he should have sent me sooner, because he arranged to have me see an orthopaedic surgeon on Monday. This went very well if having back surgery is good news. It is for me. It looks like I will be having a spinal fusion and should be free of this pain. There may be other pain I suppose,but this intense nerve pain should be gone.

This doctor took the time to explain in detail what is happening in my spine, the L5 vertebra specifically, and how surgery can repair it. I am having a cat scan and good old fashioned x-ray tomorrow, and hopefully will see the surgeon to discuss on Friday. Who knows I could be under the knife as early as next week.

I am too weary at this point to say much else, and I look forward to getting back to my usual self. Or I guess the new usual is more accurate. See that barn up there? I drive past it every time I leave my house going south and I always think of my back. When I am feeling better I envision a series of images where buildings are metaphors for bodies. Yes, my brain is still at work!

Till next time.

From the Heart,

Guess what, I am actually broken, and I would love to be fixed. That is not going to happen any time soon. This image is from 4 months ago and it looks pretty good compared to now. In the past month things have gotten worse. My pain has returned and doubling Oxycontin is not helping. Today the Oncologist told me to up it again. I don’t want to, but I can’t function like this. I am not happy.

Last Friday I saw an Interventional Radiologist. He said I was too damaged for him to help me, but that if he had seen me when this film was taken he could have. Did I mention I am not happy?

I have learned a lot about cancer, medicine, and doctors in this process, and sadly most of it is learned too late to be helpful for me. Like take laxatives with opiates before you end up in the ER trying to poop, or, when everything you know says you should wean off steroids and the doc says not to, trust yourself. Or in this case when you feel like addressing the broken bones in your back may be almost as important as addressing the cancer in your bones, again trust yourself.

Good news is I am finally being sent to an Orthopedic doctor. Is it so much that I want to know why I am in so much pain and see if it can be fixed? I don’t think so. In the meantime it has been hard for me to sit and type, and I have not gotten my new pages up here. So it goes…

Tomorrow should be a much better day if not for the reasons I’d prefer.

From the heart,

Yesterday my friend Lisa came over again. She is gifting me with reiki which I accept gladly and with much thanks. We sat on the couch talking while she lay her oh so warm hands on my broken spine. “Oh there’s the mailman” she said. When Lisa left I walked down the driveway to get the mail, and guess what I found in the driveway? Well you see it right there of course, another snake. Another dead snake. Looks like I have some transforming to do. The truth is this is welcome news.

I have some pretty big plans for the next three months and I need to get moving if I am to pull them off. I tend to let things go and tell myself I do my best work under pressure. That is likely not true. In any case I want to try to change my usual habit and see if I can manage my projects without getting frantic.

Adopt the pace of nature: her secret is patience.
~Ralph Waldo Emerson

It has come to my attention that the snake also symbolizes patience. Cancer has tested my patience and made me better at it. Now to incorporate patience into a way of working. Some other traits associated with the snake are:

• Cycles
• Patience
• Balance
• Intuition
• Awareness
• Healing
• Intellect
• Protection
• Rejuvenation
• Transformation

As long as I am being “shown” I intend to see how these traits play into my life and work. It is a pretty good list I think. Finally, a friend called today to tell me that in her culture, Laotian,(forgive me Mookie if that’s wrong) the snake means love. She said maybe the snake is showing me all the people that love me. I certainly have felt loved and supported recently. I will bring these words to my morning practice and see what happens.

It has also come to my attention that I have not done a great job of updating this blog on my health, its original intention. Good intentions you know. I have a post list here at my desk with at least ten topics on it. In any case I plan to add a chronology and diet page here tomorrow which should answer a lot of questions, and I will get started on that list of topics. There I said it.

What I did not say is I can’t help wonder that these snakes are showing up dead? What do you suppose that means?

The truth is I am not OK. I am scared and in pain and I need to face my fear. I need help.

The month of March is almost over and has been a blur of inaction for me. What happened? The answer is both simple and complex. Transformation is not easy but necessary. This snake showed up to show me some things that make me uncomfortable. This is how I see it.

A couple of weeks ago my friend Lisa came to visit and we discovered this snake, dead, on the landing at my front door. We had known a snake or snakes were living under the landing for several years, and here was this one seemingly uninjured, but dead. I took some pictures, lay it to rest under a pine tree and forgot about it. Then I found it while processing photos and decided to look into snake symbolism.

The snake represents rebirth, resurrection, initiation, and wisdom.

OK that sounds pretty good right? I have cancer. I am rearranging my life physically, emotionally, and creatively. I have had an epiphany, or perhaps more accurately a remembrance of what I need to do in the world. The many loose threads of interest are coming together to form something tangible. I am creating my world. All the snake traits are beneficial to this work, but it is not that simple.

Let me share a bit more about the snake from Ted Andrews book Animal Speak.

Anytime the snake shows up as a totem, you can expect death and rebirth to occur in some area of your life. This rarely reflects an actual death but rather a transition. Look for a change in conditions and a movement to new life. Examine what is going on around you.

Are you needing to make changes but aren’t for some reason? Are you striking out at people you shouldn’t? Are you not striking out and should? What is needing to be healed? What new opportunities are surfacing that you need to strike out for and take advantage of?

When the snake comes into your life you can look for a rebirth into new powers of creativity and wisdom.

When I read that I feel like the stars have aligned for me and I should be able to do anything I can imagine…then I freeze. This past month has been spent avoiding. A step up from running away, my usual reaction to growth, but still avoidance. What am I so afraid of? What does it take to believe, really believe I deserve to thrive?

I have written a lot about my cancer giving me freedom to be, and allowing me to let go of old shame and lack of worth habits. It is true the cancer woke me up, but my demons are strong! It took another setback to make me look at what I am doing.

My last MRI showed a new fracture, and tumor. The doctor was not too concerned thinking this is a flare in response to treatment rather than progression of disease. Good news considering. Nothing really changed in my daily life. I felt the same. Until last week. PAIN. Pain despite some strong pain medication. I learned today that I may be on pain meds indefinitely, and consequently be partially disabled indefinitely. No yoga or mountain hikes.

However, what this news does is incense me and that is good. I need a bit of fire to get me back in the game. I need to claim what I want and go get it. My time may be more limited than I know.

I need to embrace the snake, shed my old skin, and own my new powers of creativity and wisdom.

My legs and back may never be the same, but there is nothing wrong with my mind and heart.

So what is next? I am committed to spending April doing everything I did not do in March. There will be some important announcements as I swallow my pride and ask for the help I need. There will be some new work and regular writing. I know I am setting myself up when I say that, but I am saying it. I feel like the more I say it the more I can believe it. I need to believe.

From the Heart,

]]> http://www.arthopetruth.com/2012/03/30/embracing-snake/feed/ 30 http://www.arthopetruth.com/2012/03/21/lettin-go-of-myths-that-kill-claiming-freedom/ http://www.arthopetruth.com/2012/03/21/lettin-go-of-myths-that-kill-claiming-freedom/#comments Wed, 21 Mar 2012 17:40:37 +0000 pirategirl http://www.arthopetruth.com/?p=407

The Black Unicorn

by Audre Lorde

The black unicorn is greedy.
The black unicorn is impatient.
‘The black unicorn was mistaken
for a shadow or symbol
and taken
through a cold country
where mist painted mockeries
of my fury.
It is not on her lap where the horn rests
but deep in her moonpit
growing.
The black unicorn is restless
the black unicorn is unrelenting
the black unicorn is not
free.

The black unicorn is restless,the black unicorn is unrelenting, the black unicorn is not free.

She is not free, nor am I in her company. This black unicorn is born of a twisted relationship between my mother and myself, between my mother and her mother. How many generations back does it go? I have come to the point where it no longer matters, because guess what, the black unicorn is not real. It is a myth. A myth I have held tight to and no longer need.

Banishing the black unicorn is not, will not be easy, but I trust I am ready. I am ready to let that moonpit fill with the bright light I deserve. I am ready to be free. I think the black unicorn is too.

This place has been a great source of my being ready. I must thank my cancer, and all that are supporting me for the courage to let the black unicorn go.

From the heart,