I see 106 posts on my blog since its beginning a year or so ago. Always, a huge piece of my picture I have left out. Why? Fear. It is unspoken but with a hand full of those in my herd. I fear being judged. i fear the stigma. I fear feeling less than. My excuse is often that I do not want newcomers around my twelve step program to see a pill as a quick fix for this elephant. Get into the 12 steps first. The real reason for not telling is the maybe only self imposed stigma.
I have chronic depression. With the steps and later the outside help we call therapy, the truth unfolded. I can see cycles of depression all the way back to adolescence. My annual Social security reports about income and how much SS we can receive if we retire - well, they show a history of major ups a downs in income. From 175K to zero. One year 25K and two years later 80K.
When first i was diagnosed with depression, I had been largely unable to leave the house for near a year. It felt like slogging through mud - everyday. Not suicidal, but mental and physical lethargy. Everyday. Income was zero that year. I seldom answered the phone nor the door. I lived alone and stayed alone - isolation. Looking back It is difficult to believe how deeply the heaviness glommed onto my entire being.
I saw my GP in about 2002, described what I felt and he suggested Paxil, an antidepressant. I had known for years that something was wrong, but denial is not a river in Egypt. I did not want to have depression and I had even ridiculed those who had it. I once made fun of a guy who talked about his suffering, and a couple months later he was dead. Okay, I did not cause his death, but perhaps I threw another rock into the bag that weighed him down. I now feel empathy and sorrow thinking of him.
The Paxil made a difference immediately. I got my life back. 9 months or a year later, I figured I did need it anymore and tapered down to zero. For a few months I was okay but then . . . the mud gradually got thicker and the glom enveloped me again within just 4 or 5 months. Nothing in particular triggered the spiral. It just settled around me.
I told my doc and he referred me to a professional in appropriate therapy. We tried Paxil then most all the other medicines. Wean on, not work, wean off then try something different. For a couple years those on and off cycles continued until, finally, we found the right one for me. Did you know that the usual antidepressants work for only about 50 or 60% of patients?
The stigma is here - I know you feel it too. Why the stigma? Treating any other part of the human body for whatever ailment is what we do. That is okay and even required. But for this and only this part of the body, this organ we call brain, the stigma applies. My cancer has no stigma but my depression even I judge.
Now I have both, well actually 3 diseases: cancer, depression, and addiction. They may well exacerbate each other. Much evidence suggests that drug use is a form of self medication for depression. I do not understand the interrelationships, but I know I is one of all the above.
Now. the Tarceva daily poison we call chemo, and my depression medicine seem to interact in counter active ways. What if the Tarceva can work better with less or none of the other pills. Only one way to find out. Wish me luck . . . no, pray for me. Thanks.
Bill
Thursday, April 29, 2010
Saturday, April 24, 2010
Run the gamut to gratitude
Everyday I run the gamut through sad and mad, scared and worried, regret, grief and sometimes moments of despair. Almost always however, those tough emotions wind up leading to gratitude. Gratitude for the wondrous life I have experienced since getting clean and into recovery over 16 years ago. Gratitude for the strong foundation of morals and values I was given growing up, lost during active addiction, but still there at getting clean. Gratitude for grace, unearned gifts, appreciated only as my recovery spurred spiritual awakenings and growth. I have learned to notice the miraculous world where within I live.
The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.
What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.
My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.
Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.
Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.
At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.
No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.
Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill
The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.
What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.
My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.
Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.
Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.
At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.
No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.
Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill
Sunday, April 11, 2010
What's gonna come out here?
Would that I could write this knowing noone is going to read it. Sure, I could write in some private spot, sduch as a word doc or a journal kep in my machine. My ego not so secretly wants to be read, but sometimes it can come out of me without much interference from ego. I want to look good, but more importantly especially now, I want to feel good.
Writing here was regular for about 10 months, and has tapered down to nearly zero. I do not know why, but I do know I have felt crappy between my own ears recently. The physical symptoms have gradually worsened though still not debilitating for more than 4 or 5 hours a day. Worse has been the mental/emotional . I had a couple conversations the past 2 weeks about I was so tired of being so sensitive and how I had just been putting emotions on the shelf. But as soon as I verbalized that a couple times, the crying began to trigger more readily. The weight of having incurable cancer began to feel heavier than last couple months. All the what's gonna happen to my family, friends etc? What will Jacki have to deal with - I just hate what this is and will put her through.
Some things do not help and instead make things worse. e had a trip to Hawaii planned for next week. In my mind it was sort of a "bucket list" item of a last big trip. Rather morose perhaps, but that is how it felt. Then the opportunity to be part of the new drug trial came up and changed the picture. Maybe I don't have to die antytime soon. However the timing of the trial and timing of Hawaii conflicted. Going back and forth to Bethesda changed our financial picture. We could not afford Hawaii and Bethesda travel. The timing is off. So we cancelled Hawaii.
The airline at first was fine with cancelling, and even said a letter from the doctors in Bethesda would work and we would get our airfare back in a week or so. But then they informed us that because we had trip imsuirance we would have to go through an insurance company. The nightmare began, Insurance- nightmare - the stereotype. They want reports from last six doctors, copies of office visit notes, proof of diagnosis. I think the requirements are a list of twelve items. To me it feels like a ton of weight and I just do not have the extra mental energy already in short supply.
Then I ask my oncologist for a copy of his notes. I receive them and read something that makes all that I go through sound like a cake walk. So now I get to confront my doc over his watered down notes. The notes indicate how really involved he no longer is in my case - he doesn't even know what
's going on. Another small draing action required to get his accurat report for the insurancel.
Is my COBRA running out soon? When would Medicare kick in? We received a bill for $1200 for my recent CT scan. Chest, abdomen and pelvis, over $700 each. All in one scan, but billed as three separate events. Jacki is working hard at her job and dealing with her end of this cancer scene. My job is dealing with these seemingly minor issues. My head, and most of anybody's heads view my symptoms and tasks as minor. But it all feels near insurmountable to me. Sure, I know, one bite at a time.
So, I get up in the morning, do our coffee, bring it and the paper to jacki, read the paper and work Soduko with Jacki. Good quality time with my wife. Then she is off to work leaving about 3 hours for me to get things done before taking the little white pill of cancer slowing poison. Then I get to be non functional for 5 hours, give or take, Can't walk straight, drive, climb stairs.. I can talk, but look out for whatever words might leave my lips. That leaves about 3 hours in the evening before I am just too tired to do much at all. Recovery meetings, be a sponsor, be social and then lounge with the energy left over before twilight zone lethargy. Everyday. Everyday. Everyday.
The price the pill extracts for breaking it's scheduled demands is increased dysfunction for the next day or 2. I will not read this over beore clicking on publish. here it is unexpurgated. My hunch is it comes off as complaining. Some days are just like that.
Bill
Writing here was regular for about 10 months, and has tapered down to nearly zero. I do not know why, but I do know I have felt crappy between my own ears recently. The physical symptoms have gradually worsened though still not debilitating for more than 4 or 5 hours a day. Worse has been the mental/emotional . I had a couple conversations the past 2 weeks about I was so tired of being so sensitive and how I had just been putting emotions on the shelf. But as soon as I verbalized that a couple times, the crying began to trigger more readily. The weight of having incurable cancer began to feel heavier than last couple months. All the what's gonna happen to my family, friends etc? What will Jacki have to deal with - I just hate what this is and will put her through.
Some things do not help and instead make things worse. e had a trip to Hawaii planned for next week. In my mind it was sort of a "bucket list" item of a last big trip. Rather morose perhaps, but that is how it felt. Then the opportunity to be part of the new drug trial came up and changed the picture. Maybe I don't have to die antytime soon. However the timing of the trial and timing of Hawaii conflicted. Going back and forth to Bethesda changed our financial picture. We could not afford Hawaii and Bethesda travel. The timing is off. So we cancelled Hawaii.
The airline at first was fine with cancelling, and even said a letter from the doctors in Bethesda would work and we would get our airfare back in a week or so. But then they informed us that because we had trip imsuirance we would have to go through an insurance company. The nightmare began, Insurance- nightmare - the stereotype. They want reports from last six doctors, copies of office visit notes, proof of diagnosis. I think the requirements are a list of twelve items. To me it feels like a ton of weight and I just do not have the extra mental energy already in short supply.
Then I ask my oncologist for a copy of his notes. I receive them and read something that makes all that I go through sound like a cake walk. So now I get to confront my doc over his watered down notes. The notes indicate how really involved he no longer is in my case - he doesn't even know what
's going on. Another small draing action required to get his accurat report for the insurancel.
Is my COBRA running out soon? When would Medicare kick in? We received a bill for $1200 for my recent CT scan. Chest, abdomen and pelvis, over $700 each. All in one scan, but billed as three separate events. Jacki is working hard at her job and dealing with her end of this cancer scene. My job is dealing with these seemingly minor issues. My head, and most of anybody's heads view my symptoms and tasks as minor. But it all feels near insurmountable to me. Sure, I know, one bite at a time.
So, I get up in the morning, do our coffee, bring it and the paper to jacki, read the paper and work Soduko with Jacki. Good quality time with my wife. Then she is off to work leaving about 3 hours for me to get things done before taking the little white pill of cancer slowing poison. Then I get to be non functional for 5 hours, give or take, Can't walk straight, drive, climb stairs.. I can talk, but look out for whatever words might leave my lips. That leaves about 3 hours in the evening before I am just too tired to do much at all. Recovery meetings, be a sponsor, be social and then lounge with the energy left over before twilight zone lethargy. Everyday. Everyday. Everyday.
The price the pill extracts for breaking it's scheduled demands is increased dysfunction for the next day or 2. I will not read this over beore clicking on publish. here it is unexpurgated. My hunch is it comes off as complaining. Some days are just like that.
Bill
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