Orphaned

I seem to be in a lull. My wife’s last round of tests were negative for cancer activity so we get to rest for 3 months. Now that I have all this time available, my grief from losing my parents has bubbled up. Yes it’s been 4 years, but I haven’t had a whole lotta “me” time since moving here.

I am feeling very alone in the world. I have no one to call. Not that my parents ever understood my life or had much to offer, but they existed. I could call them. When life was good. When life was challenging. My heart has felt so pained by all this that I went to my doc to make sure there were no health issues. Even got an EKG as a baseline. Everything checked out fine. So I called my ex-sister-in-law last night. I told her I needed her to be the person I call now. She understood. She lost both parents too. She is only a year older. She said we will go through the rest of our lives together, sharing the aging process. It was comforting.

So I am taking care of myself, but I am still feeling overwhelmed by sadness and grief. I just never expected it because I had such a difficult relationship with my parents. They hurt me and disappointed me too many times to count. But they loved me the best they were capable of, even if it wasn’t enough for me at the time. And then I married someone just like them. She loved me but was not capable of loving me the way I needed. My current wife is everything I ever wanted and needed, and she has Stage IV lung cancer. The world works in mysterious ways.

So I don’t have a lot of “me” time because my focus is usually on my wife. And when I do, I drown in grief and sadness. Would like some joy mixed in there from time to time. I gained 50 pounds in the last 4 years. I ate my way through all the changes and stresses. My Facebook post from 4 years ago on this day was that I lost 30 pounds in that past year eating healthy and exercising. It is time for me to drop this weight yet again. Eating through stress is not helpful. Gotta get back to meditation. I am starting by going on my treadmill each evening after I get home from work. It actually cheers me up. I will take it slow like I did the last time, although I think this time will be even slower with the desk job and the post-menopausal metabolism. Slow and steady wins the waistline.

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A Reason To Live

As previously mentioned, I am a caregiver for my wife, who has been dealing with Stage IV Lung Cancer for 6 years. They originally gave her 18 months to live. She has had her brain zapped 30 times in the past six years (stereotactic and gamma knife), had one lung removed 6 years ago, had a course of radiation to her chest 3 years ago, had major intravenous chemo twice, had brain surgery a year ago, was on the daily chemo pill Tarceva for two years and has recently switched to a new daily chemo pill, Tagrisso. That is 6 years of poisoning and invasive surgery. She has also been dealing with very painful muscle spasms on a daily basis, which 3 muscle specialists have yet to diagnose or treat properly, and now has kidney stones that cause grief when they decide to move.

When we first reestablished our friendship, 10 years ago, her wants were to finally have some true romance in her life and see her kids happy. Her son at the time was still living at home in his 20’s and her daughter was still living with an ex-partner and had just turned 30. Four years ago I brought her that romance. Since then her son, now 36, finally married the woman he had been dating for 5 years and recently produced her first grandchild. Her daughter, now 40, has settled in with a new partner and they are very happy together. Check, check, and check.

Now I watch her struggle on a daily basis with this body of hers. Thankfully, the last two rounds of brain MRIs have shown things are quiet, as have the petscans. But the kidney stones of the past 4 months have destroyed the breather we used to get between scans. Every day I see her doubled-over in pain whenever one of those muscle spasms occur, in whatever part of her body they choose to show up in, without rhyme or reason. And her level of fatigue from all the radiation just keeps growing. We used to take walks around the park together, she can’t even make it half way round the park anymore.

I grieve for what might have been. We are so good together when she is present, when she is not distracted by some part of her body. Those moments show me what we could have shared over a lifetime that we are not going to have together. I feel robbed. I miss her terribly between those moments. Yet I know I would miss her even more should she not be here anymore.

And somewhere along the way, I have lost myself. I have spent the past two years since we have been living together giving everything to her. All my decisions have been based on her needs. I stay in my current job because it has great insurance for her and I do not have the energy to find a different job. I am mentally and emotionally exhausted all the time. I put on weight that I am not motivated to take off even though I have never weighed this much in my life and feel very uncomfortable. I simply can’t seem to find the time to just work out for 5 minutes 3 times a week in my own gym downstairs. No excuses.

I realize that I took it upon myself to give her a reason to keep on living by bringing her that romance. Of course it also brought me that romance as well. But that decision is slowly doing me in. And that will not help her. I realize that she needs to find her own reason to live. I cannot do that for her. It is not good for either of us. I have to step back and have some Me time or their won’t be any Me to help take care of her.

She still drives, is still mentally all here. She does the shopping and coordinates all the people who help maintain our home, in between coordinating all of her doctor appointments. I know there are other caregivers who have totally disabled spouses. But it is all relative. I work 40 hours a week and drive 40 minutes each way every day to get there and back. Lots of caregivers are retired. She is retired on disability.

She moved 3 hours north of where she lived her whole life just to be with me. And she is home alone all day with her thoughts while I am at work. Now she is going back down there once a month to visit with her grandchild and family and friends. It has created a balance for her that cheers her up. She is finding her own reasons to live. It is not my job. I love her more than anyone ever. I am here, in it, with her, every single day. She is not alone. But there are days when I feel totally alone.

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Falling Apart

My neighbor died. The nation died. The heaviness of the sadness in me is never-ending. Drowning in internal tears. Pema Chodron’s When Things Fall Apart would be perfect for me to reread right now. The inmates are running the asylum.

I am not surprised our country is filled with racist, sexist and homophobic people. Just because we have been gaining our rights and freedoms in the past few years does not mean all those other people died, moved to Canada or had a sudden awakening of heart. It just meant they went underground to plan on how to get their world back. Their world is still slipping away. Their time is still passing. But they are going to stick it to us before they are forced to go. One either rises up from the muck or falls back down. One must rise up on one’s own, not by standing on the shoulders of others by oppressing them, hating them, or using them. They would like to drag us back down into the muck with them.

I have run out of uplifting, pithy sayings. I mourn for this country. I mourn for us all. Hatred is not a good environment for anyone, regardless of how you voted. This whole atmosphere breaks my heart on a daily basis. How humans can treat humans the way we do is just so demoralizing. The Dali Lama says we are all the same. We are all human beings. Hating another human being is like hating yourself. We all hurt. We all fear.

I do not know how to heal this country. The hatred and divisiveness have been here forever. Racism, sexism and homophobia do not ever go away. People bury it behind smiling faces. I surrender, Universe, G-d, whatever you call yourself. This world has lost its way. The grand experiment has failed. Those Four Horsemen must be cinching up their saddles. The Phoenix is at the spa getting its feathers fluffed.

My neighbor’s smiling face and laughter have been in my mind since she died last week.  I miss her.

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Like a Phoenix we will rise from the ashes of despair. And soar.

It’s An Epidemic

Everywhere I look, so many people I talk to are losing people left and right. Their old friends, cousins, aunts, uncles, previous spouses. The rug has been pulled out from under. I spoke to a woman in her early 80’s. I asked her if you ever get used to loss? No. It becomes a part of who you are. You live with it.

I have run out of tools. Get used to it? Really? Live with it? Well, she’s got a point there. It does appear to be an unshakable truth. Everybody dies. They just never taught me what to do about it. I have studied several spiritual perspectives over the years. I know all about the wheel and how you have to work towards enlightenment to get off it. I know the story about us all carrying a spec of g-d in us so g-d can know itself better when we die and return the spec with all the data we amassed during our lifetime. So much easier to read about. Way harder to live it.

I remember reading something like this about George Harrison. Now we all know you can’t believe much of what you read, but it stuck with me all these years. George Harrison was very spiritual. He built his later years all around his beliefs. The article claims that on his death bed he lost faith and felt cheated by his beliefs. Shocking. And, I get it.

I have felt lost for several years now. Ever since my parents died within 6 months of each other. I recently perused a couple of books on grief. Seems this is a symptom of grief – feeling hopeless and directionless. I suppose I should feel relieved that this is part of a well-known process and some day it will pass and I will be able to move on with my life. But right now, I have no sense of any such possible completion. Right now I am simply drowning in this loss, this fact that nothing lasts, that nothing stays the same.

Did I mention I tend to feel the need to control? This new concept of nothing lasting or staying the same has completely shot control to bits. So I guess underneath all this anger is the total terror that there is no such thing as control. Damn. Should have read the fine print.

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And Another

My neighbor Patricia is dying. She was my neighbor on the West Coast in the Sierras for 8 years. We got very close during that time. She was dealing with Multiple Myeloma. It is hard being this far away. Her world consisted of all the creatures of the forest, literally. She named them, fed them, and counted on their returning from season to season. She also rescued giant parrots from around the globe. She spent the last few years raising enough cash for the rescue organization to care for them for the rest of their lives. Her last course of chemo made her brain swell. They didn’t know it was the chemo until too late. She must have been trying for one more miracle. I know they had been trying different chemos the past few years as their potency waned.

This vibrant woman of the woods is now reduced to a wheelchair, with slurred speech and out of control anxiety. She has hospice care 24/7, a sure sign the end is near. I feel like every where I look anymore, someone is dying. The nature of the world as you approach 60, I guess. Life really gets reduced down to what is really important. I just bought a couple of books on grief. Hopefully, there is something within those pages to bring some comfort.

Right now my wife’s daily chemo pill is working. She started 6 years ago with a round of chemo, the kind they give you intravenously. Then after 3.5 years it came back in her chest so they gave her another round of a slightly different cocktail and bombarded her chest with radiation. Once that was done she started the first chemo pill, Tarceva. It was supposed to get into her brain and stop the brain lesions. It didn’t. She is now on the second type of chemo pill, Tagrisso. It is showing signs it is getting into her brain, but we won’t be sure until November’s round of tests. Of course, according to the docs, we can never be sure what exactly is working. Drives me crazy.

And then I go to that dark place, the place  I call The Pit. The place of fears of the unknown. We don’t know what is available should this pill prove to not be useful. All the new immunotherapy drugs do not work for her EGFR type of lung cancer. The whole current trend will be of no use for her. I dread the day we have to cast about for a miracle drug. I don’t want her to wind up like my neighbor. Wouldn’t it be better to be yourself and let go, rather than grasp madly about with the risk of being totally decimated in the last months of your life? The cancer will already do a fine job of decimating you in the end without the help of extra poisons. When is it time to say enough? I hope we don’t get to that point for a very long time.

Be at peace, Patricia.

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What’s Missing

I now understand what I miss about having a mother. It’s that special connection you feel just cause she’s your mother. I spent some time with wife’s mother at a recent family event. She is always very sweet to me. And it just suddenly struck me about the quality of her interaction with me. Something I haven’t felt since my mother died. Made me very sad.

My mother’s been gone almost 4 years. We had a complicated relationship. We didn’t work things out until my 40’s. I finally received the love I always needed when she was on her death bed. Her personality had gone, but her spirit still remained. It was during her last week. When she said she loved me I really felt it for the first time. It was so pure. Went right to my heart. Such a gift.

And I felt very complete and finished after that. So it was very surprising to me to have this experience with my wife’s mother and realize that has been missing from my life. Another loss to grieve. She is in her early 80’s. I asked her if you ever get over loss or used to it. She said no. You carry your losses with you. You simply learn to live with them. Guess I am in the learning phase.

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Persephone’s Time

So we are heading into winter, the time traditionally spent visiting the Underworld. The days are shorter. I went to work in the dark this morning. Not very fond of that. This is the time of year to stay indoors from the cold and snow. The time of year to go inside, deep into our inner sanctums. The perfect time to embrace grieving and loss, and all that accompanies that.

My dad cared for my mother for years before his death. He didn’t tell us kids she had dementia. We all lived far away. I visited once a year, twice a year during their last few years. One day, my dad had had enough. He bled out overnight in his recliner. He was going to have an endoscopy in two days for some unknown reason to us kids. He didn’t have to die, according to the docs. I think he just had had enough. I had pleaded with them for years to move into an assisted-living place to get help. But their privacy was more important to them. I pleaded with them to use visiting nurse services that were covered by medicare. My mother didn’t like them. She had dementia, and my dad was tired of fighting with her so he canceled the services. So I guess alone in their condo in Florida, he just decided to check out. I know this because he never in his life spent the night in his recliner. And he spent two nights this time. The first time he woke up still here, so he tried again the second night. We did not do an autopsy so we don’t know what caused his bleeding out. He was 93. Life happens.

Every so often I think about my dad caring for my mother when I see myself caring for my wife. She is in her right mind. She is not dying. But she takes a daily chemo pill to keep the cancer at bay. Her brain has been zapped with radiation 33 times in the past 6 years. She has memory issues, but is totally sound in her thinking. She is on disability. I work a 40-hour week so she can have good insurance until Medicare kicks in. That will be next summer. Then I will be free to look for a different job if I want. But I don’t know that I would have the energy to try to impress a brand new company. Caregiving is exhausting. We have only been married a year. Next week is our anniversary. Time with her is so precious. I hate that I have to be gone 10 hours a day to make the money work. So I don’t take a whole lot of time for me alone because I have so little of my day available for time with her. Which is partly why I am just getting around to dealing with the death of my parents from 3 years ago. I think about how my dad had no time for himself, but it had been that way for so long, I think he had forgotten how. On one of my visits I offered him some time to himself. I would hang with my mother and he could go out and do whatever he wanted. He turned me down. He said, “What would I do?”

I don’t want to become my dad. My dog forces me to go out without my wife. She has only one lung and can only do smaller, flat walks. My big dog and I go hiking up mountains. Endorphins are a beautiful thing. I sneak hikes in first thing in the morning on weekends when she is still sleeping, when the weather is good. Otherwise I just do a brief walk down the road mornings before work. But lately I haven’t had the energy to do it. This grief thing just saps me of all inspiration. I weigh more than I ever have. Grief on top of post-menopause is frightening. I refuse to buy another size up. And so this winter I will curl up in a ball in front of my wood-burning stove and completely embrace these feelings of loss, meaninglessness, etc., while still needing to be a positive companion to my wife with her long laundry list of ailments. Yeah, good luck with that.

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