Working Hard

Sometimes Paul points out to me how hard I work (both at work and at PT or at my health.) I was pleasantly surprised at the improvement I’ve made at all of these. But it’s still hard work and Lord knows I’ve struggled to manage it. He’s right though, I still sleep a ton. I once read that your body heals itself while you are sleeping. I guess maybe I’ve undergoing a lot of healing.

Julie wants me to work on what my needs are. I keep myself so busy I cant get there. I should be asleep.. this week I’m not even getting a weekend. I will take it one step at a time. I will figure out what I want from my life one day… and I will make the time to sit down and think about it.

Structure and Sick

I have a cold (I think) or the beginnings of one. Paul texted me that he went to bed - leaving the conversation on an odd note and leaving me wondering if he was mad at me. I hate that, it makes me sad.

I’m much more structured lately and sticking to it - well, one week, no big whoop, but it’s something. I keep reminding myself how rough things have been for the last year and give myself a little “go me” whenever I feel down. Look at what you’ve done, chick! Chin up!

It’s going to be a rough time coming. I guess on some level I do just have to put my head down and plow on through. I also need to make decisions and live with the consequences.

Dear me

I’ve been through a lot in these last few weeks. I don’t think recounting it all would do any good. I’m actually forcing myself to write this and I should be in bed. But at least I slept most of the day so I shouldn’t be too tired tomorrow.

I’m making significant changes in my life in order to adapt to the increased demands of work and to correct the toll depression has taken on me. I still have the same overarching problems I had before - those have not disappeared - but there has been a huge development there for me. I now understand and have clarity and therefore progress has been made.

My task now is to survive - to strike at the balance of work and self-care. I’ve never been very good at self care and I think that reflects in my work and my health. I’ve made drastic changes with that when I got sick. Now… now I’m being asked to step up in both regards. I feel angry and hurt and resentful. And none of that - my feeling about it - matters. All that matters is making the grade, this is yet another bar exam, lsat, courseload, impersonal bullshit thing that doesn’t care how hard you tried or who you are or what you bring to the table. Make the grade or not. And I plan to make the grade.

So I dig down deep into my reserves to pull up more strength, more energy… and pray, God.. that I am able to be consistent. I didn’t realize I was slipping before. Now I’ll be on my guard. But even so, it’s a daily struggle and I’m giving up more of my life. I now will have four out of twenty four hours that are my own and I am conscious. That means twenty hours that belong to someone else/some other task or errand/sleep. I really do hope this is what I want in life.

Another Sleepless Night

Another sleepless night of pain. This time, I know why. I thought once I got the medication for it I would hurt less. Yes, it does work a bit but here I am … three advil in me, a hot shower, and my new drug and I’m still aching.  I think this time the anxiety has a lot to do with it.

Sources of Anxiety:

Work. There’s always the question of the unknown with work - who/what will explode on fire. Who will throw you under the bus. What stupid thing you did that you do/don’t remember that will bite you in the ass. Right now though this is in the back burner for me.

Health. Another piece of the puzzle given to me - I’m going to tell everyone at work it’s simply bone/joint problems from the cancer. But the truth is more complex than that, it’s both the cause and the effect. It sounds too weird to think connective tissue disease can cause cancer, so I’m not going to explain that to people. I have two new doctors I have to see - and x-rays to pick up and deliver. My health is a full time job on top of my full-time job and I’m starting to feel overwhelmed.

Finances. Jarrod and I got a new card through his parents and moved some debt from the high-interest card over to it. Some more we will move around today on other cards. Then I have to ask my parents to refinance our loan with them for some more money and longer duration, and then that big awful card should be history. At that point, we can think about the future.

My family. My sister is foremost in my thoughts lately with what is going on with her. It occurred to me it was my mother’s 60th birthday and she has been sad for the majority of those 60 years. I really wish she could be happy. I love her so much. My father.. all of them… I wish I could hug them all and remind them how strong they have been for each other. That they have to care for themselves, too. And stop caring what other people think. I would like to see them again but every time I think about it, my finance worries and my other worries take hold.

Emotions. Will I always be like this? go from feeling passion to being empty and shut off? Can I stop that cycle? Why do I do it? When I am withdrawn I don’t know if I will ever come back. I know that lack of feeling during that time means nothing, and I can turn it back on if I try really hard. Or if something triggers it, like this last time. But I also know it will return.. and I will pull away… and then I cannot trust what I do/don’t feel. I am empty, uncaring, and cold. I simply go through the motions.  It is NOT some… shut down from stressors. It’s like.. something comes up that is important and I go into business mode. My wants/desires/passions are unimportant. I just get it all done and I’m cold as hell. Then.. over time, weeks? months? it comes back like hardy spring flowers through the last bits of snow. Over and over, winters and springs, and I can’t stop.

So when I’m in spring I feel, but i don’t trust those feelings because I know winter will come again and I will feel nothing. Why commit to anything when those feelings end. Why trust any feeling when those feelings die? Passion, desire, all are fleeting and die like those spring flowers when a frost comes. The only thing permanent are the facts, the realities…

I hate this.

needs

Right now i feel like nobody can listen to me the way I need. No one can elicit the words that need to escape me. Not friends who are very needy, not my parents, certainly not work… everyone needs and nobody is able to spend the time to sit down and pull it out.

I feel like i need a week of silence by a babbling brook or something to finally have the strength to say what is building inside. It’s… it’s shame. I feel ashamed of how good I’ve done, afraid of the attention I’ve gotten, shame for being afraid of the attention… and really, really beating myself when I take any misstep. Self doubt when I take decisive action and make things happen. Shock at how quickly I can stop a train. Fear that that power is wrongly used or will bite me in the ass.

I was never one to use power or even advocate its use. I was the one who says “its not worth it” to ease over the pain of being powerless. Today I made a huge change in the life of two people at work within 10 minutes. Beginning to end.

Now, now… now this fear grows deeper and grabs hold of me and rattles me all fucking day long… because I misstepped. And caught myself. Something happened with a case and before sense returned and I could think straight enough to see the solution, the big boss was there, asking questions, being involved. When it finally clicked for me, the damage had been done. She knew there was that possibility of mistake. And now my position, my power, is weakened. Do I want to use that power? No. But losing it scares me. Even if it happened and I got passed up, I would be very unhappy, but I would live. I would survive. I know I have more to show her. She just needs to trust me a little bit longer.

And Paul is worried, terrified, all the time. I cannot calm him. Ky and Chris are constantly at it, nagging, complaining, abusing. I call my mother to tell her I’m afraid and my small problems are dwarfed by my sister and the life they are currently living right now. Jarrod wants me to stay around more, silently… be more… be different.. he says so silently. I know without him saying. So where do i go to open my mouth? How do I form the words? What words do I say?

No, I dont want you to stop needing me. I dont want anyone to stop wanting me. I guess I just need to deal with it and accept the consequences.

Arthritis

It’s pretty bad tonight. The pain (and my brain) are keeping me awake when I’m so tired. I’m full of guilt about  not working hard enough, negative self-image (a LOT of that), and just frustration at being unable to control my thoughts. I am giving myself a break but hating myself for it. It’s amazing what the brain can do.

My cat just came up to see me, she’s so silky. Another thing I feel guilty enough, not spending enough time with those two kitties.

God, aren’t I too old for these teenage feelings? negative self-image, guilt, and all that? Hadn’t I moved past it all and said.. none of this crap matters?

What did matter over the last 8 months that got me through? What was I focussing on? What was I thinking? I know I wasn’t worrying as much as I do now. What WAS I thinking? I know I was sad at times. I know I was thinking of being gone and it was hard to deal with. But I was at peace, and I can’t figure out why that was. I know i didn’t give a damn about my weight except peripherally as something I wanted to work on. I took work with a grain of salt and a deep breath. Now everything seems just so much more serious … I guess I have lost my perspective.

No, Julie, he doesn’t always hear me. But sometimes he hears me better than I hear myself… I don’t know which case this is here, if not both.

Cancer

There has been an update to that whole situation which is good news, which I can only summarize with the following: the prognosis is very good, I am doing really well, I no longer need a bone marrow transplant. All great news!

I also am doing really well at work, got a raise and a ton of recognition. Everything is really good right now aside from a couple of dumbass friends acting retarded and my mentor being kinda bitchy. I’m ignoring that for now because I don’t feel the need to be bothered by childishness. Truthfully it hardly bothers me at all because I see it for what it is - them, not me.

I have truly enjoyed the upswing in everything, I really have. It is frightening, I will admit. I keep waiting for the bottom to fall out. Perhaps I’ve finally just climbed up another level in life, earned it or something like that. Who knows?

But there is some melancholy. I don’t know what it’s about. Maybe it’s chemical. Maybe not. There is something to be said to having your whole life dumped back into your lap with “here, you finish it” kinda written all over it. When before everything was cram cram cram everything in last minute, now, and believe me I don’t think I have any right to complain about this, I’m left with this mess and told to make something of it.

What the hell do I make from this? Haven’t I already done something with it? A successful career, a personal life, a family I love? Am I really back where I started, asking ‘what else is there?’ Shouldn’t I know, after cancer, that THIS is enough?

And I think that’s why I’m sad, because I’ve been given another chance at life and I still haven’t learned that lesson. I still want more… of what? What do I WANT? Isn’t life enough?

Open letter to my Parents

realize there’s some confusion right now about my test results and what everything means. I’ll try to break it down for you as best I can, as I understand it.

Myelofibrosis is broken down into two types: Primary and Secondary.

Originally, Dr. Carroll thought I had primary idiopathic myelofibrosis, which is a pre-malignancy blood cancer. This illness progresses by the bone marrow becoming scarred and fibrosed - essentially turning from a liquid (normal) to a solid (not normal). Bone marrow produces your red and white blood cells and the scarring stops/lowers the production. The only known “cure” is a bone marrow transplant. There is a way to keep the red blood cells alive longer, but no one really knows why it works. This treatment includes thalidomide-type drugs. That is what we were going to do.

However, when I told him about my autoimmune illnesses, Dr. Carroll made a leap of faith and gave me an immune suppressant called cyclosporine.  In his mind, if i had primary, it would keep my blood alive longer. If i had secondary, it would heal my marrow and keep my blood alive longer. As you know, it healed my marrow, which means I do NOT HAVE primary myelofibrosis because primary would NOT EVER have gotten better.

Therefore, I have secondary myelofibrosis. Secondary myelofibrosis is secondary to another illness. Originally, he had ruled this out because usually, it is secondary to another cancer such as myeloma or lymphoma. He had tested these for me and I did not have them. That is because in this case it is secondary to an autoimmune connective tissue disorder. More on that below. Anyway, when myelofibrosis is secondary, it means it is brought on BY that other illness. Therefore, if you treat the illness that brings it on, it actually gets better and your bone marrow becomes liquid again. This could not happen in primary myelofibrosis.  Does this mean I don’t need the bone marrow transplant and I have been cured? No - but it is indefinately on hold.  The plan is that we keep me on cyclosporine for as long as we can. This treatment cannot last forever - it can cause severe kidney damage and also it suppresses my white blood cells which makes it harder for me to fight off infection. In time, i will need to get off this drug. We have no idea how long. The bone marrow transplant option still has to be a very last resort option to reset my immune system and save my life should there become worse complications down the line either because of the drug treatment or because of other unforeseen problems.

So what else can we do other than continue this cyclosporine? We need to find out what the underlying illness is to determine that. We now know it is a “connective tissue disorder.”

There are five known connective tissue disorders.
1- lupus
2 - osteoarthritis
3 - scleroderma
4 - sjogens syndrome
5 - a mixture of these known as mctd

I do not have 3/4/5. Scleroderma is a hardening of the skin and sjogens involves tear ducts and saliva. Due to the fact that Dr. Friedman of Cedar-Sinai found positive testing for systemic lupus back 5-6 years ago in collagen testing, that is likely the culprit. I meet with Dr. Snyder on July 17 and then Dr. Carroll wants to see me again. The two of them are going to float thoughts between each other as to how to proceed diagnostically to see what it is I have, how it can be treated, and what are my options for long-term care and treatment.

Altogether this is actually great news because it means less likelihood of a bone marrow transplant and of death. However, my gut instinct is that lupus is not the cause of all my problems but likely yet another symptom of a greater cause. At some point in my life the autoimmune illness just “switched on” in me and my body turned on itself. Why did that happen? Likely my mononucleosis and monohepatitis in college was the traumatic experience that set this switch on. Before that, I was genetically predisposed for it. I have been told this was due to a deformity in one of my chromosomes, #21, and that it was not due to my parents but an actual genetic defect. It is possible you folks have it too, but obviously I am apparently more susceptible or my body simply is more actively destroying itself. In any case, the cyclosporine is working and I am healthier (ironically) than I have been in years.

Anyway, hope that explains it.

Accepting Compliments

Life has been a bit different the last few weeks. Yes, I got drilled again (another bone marrow biopsy) and that wasn’t any fun. But I’m also making small improvements in my life - eating better, walking, dressing better (self-care, my big issue), and small things here and there that I won’t mention out of vanity.

The results are already showing. It also helped me realize that there are quite a few people out there who really want to see me succeed and flourish, including simply acquaintances who I had not expected to care.

Boss hired another attorney and she’s actually quite lovely and not some harpy. In fact, I rather like her. She’s sharp - and strong, and not some blonde Orange County clone.

Finished Atlas Shrugged, something I always wanted to do. It was easily the most life-changing book I’ve ever read. It lays out and frees us from the trickery our minds play.

Paul and I spend a lot of time together comforting one another through the things we must accept (It is what it is) and the things we must change to thrive (smoking, drinking, weight). Jarrod is supportive and his humor about the situation keeps me going.

The people I love, I look around, and they are all so amazing. I see so much of what they have inside and how hard they try. I see a lot of myself in them like a mirror. I see what worth the good fight imbues in a person. While you are fighting it feels like so much is taken away, you feel eroded and thrashed. But what you don’t see is how much you grow and learn to bend with the flood, adapt, and be strong for the next wave. It’s amazing to see it in my younger coworkers like John and Jennifer. This one is a woman to be reckoned with, not a phony bone in her. I immediately liked her.

I also appreciated going out to dinner with the boss and three other women over 27 to 41. I don’t think either person I told this story to actually undestood exactly what this event meant to me. These women were classy, educated, wealthy (not me, hehe) and intelligent. The conversation was not about weddings or babies. We were kind to one another and sincere, although it was mostly anecdotal, I felt refreshed. I was also able to sit back and be quiet without feeling I had anything to prove. I was comfortable in my skin. I knew that when we got back to the office, I would be put in charge and I should take that responsibility with humility and diligence - which I would and did.

I don’t think a lot about dying as anything out of the ordinary or as anything happening soon. It seems a fact of life to me that unless I am told otherwise, my days are numbered. But a short life can still be a powerful and relevant life, and if I stopped in my tracks to rest that wouldn’t really achieve anything or save me at all. The job that provides me mental stimulus and challenge; social interaction and emotional food; that job also drives me nuts and takes so much out of me, and often humiliates and demeans me. But I know I BELONG here right now and I need to be here, fully, and be more me than I have ever been. To let my light glow strong, passionately, and with grace.

I am definately not an angel. But to live your life without truly living is a bigger sin, i think, than living “morally” but dead inside. One day I hope to make terms with my problems, or maybe they will make terms with me. One day my fear may not chain me down so. But for today, I’m happy.

I’ve Moved!

And I look different. See? Pretty background. Hopefully permanent site.

I’m supposed to be going through my closets and finding outfits that look nice and fit, but instead I went grocery shopping and had J help me update my blog to be more permanent. And modifiable. Annnyway….

I will post more later.