Big Pharma

So she’s been having brain issues. Focal seizures and water on the brain. Her memory is sometimes spotty. Her brain is sometimes slow. She is getting a spinal tap next week to drain the fluid from her brain. This will hopefully get her brain back to normal functioning and normal speed. She has been struggling with finding the right words when speaking.

She is a retired RN. So I never needed to involve myself with understanding all the meds she is on cause she expertly looked after it all. Since these latest brain episodes, I’ve had to help her fill her med bars, read labels, and scariest of all, keep track of what she is taking and what she can’t take when we visit ERs and doctors. I now have an up-to-date printout in my purse at all times detailing these meds.

I feel so overwhelmed. I feel like her life is suddenly in my hands and I am so not fit for the task. But there is no one else, so I have to step up quickly. The sudden responsibility keeps me up at night. I hope this spinal tap helps her return to her usual ability so I can step back again, at least until something else comes up.

We no longer have breaks between tests. We used to have two to three-month breaks between MRIs and pet scans when they showed no new activity. We could rest in normalcy for that brief time. Since last October there has been no rest. Always something new. In October it was kidney stones, which took 3 months to calm down. Then there are the constant muscle spasms that all the specialists we’ve seen can find nothing to explain or treat them. These brain issues started in March. They called them Focal Seizures. By-products from 6.5 years of zaps to the brain to destroy mini-tumors. That also seems to have caused water on the brain. Her body is starting to show signs of 6.5 years of treatments. The cancer will not kill her. The treatments will. And I get to watch. Piece by piece, as she slowly slips away from me.

I feel I need to let go of any chance at normalcy and just embrace moments. I memorize those moments so I will have them after she is gone. Moments like cuddling on the couch, holding hands by a waterfall, walking on the beach, enjoying a full moon or starry night from our back deck. Our budding relationship has been reduced to moments. I have had four years with her. Don’t know how many more viable ones are left. I am turning 60 next week. I feel like I will be alone the rest of my life after she is gone. Who could possibly take the place of my Bashert?

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Internal Struggles

Up until four years ago, my struggles were external. First I struggled against my parents, then against my ex. Having removed all external barriers to my having a life, I fell over with nothing left to push against. I have been wandering listlessly for the past 3 years or so. I am slowly dragging myself back to center, although it’s harder to find.

I was recently informed that my struggles are now internal. I now push against that part of me that I internalized from how I was raised, etc. So my parents may be dead, and I may be all grown up and out on my own, but they live within me. The judgmental, unkind, unsupportive parts of them. Internally, I am as abused as I was growing up. I give myself very little support, rage against my actions if I deem them stupid, and basically cut myself very little slack. I am kinder to the birds who feast on my feeders than I am to myself.

I was always worried that I could not financially support myself. It took me two years to find my current job after having moved 3000 miles across the country to start a new life. I didn’t have all the information about the job market when I moved. It was not as I had hoped or expected. I lived off savings for those first two years, terrified I would lose my home and wind up on the street. I finally found this job. I must drive 40 minutes each way, 5 days a week. Before this I had been a contractor for 24 years, working from home, making my own hours. This new permanent job was a huge adjustment for me. 8-hour days, 5 days a week, no negotiating, no telecommuting. The East Coast is not as flexible as the West Coast. My knee was the first to act up from all the sitting at the desk. They say sitting is the new smoking as far as shortening your life span. I gained 10 more pounds during that first year. And they pay me very well.

I have now been at this job for almost two years. The first year I wowed them with all I accomplished, which to me was not that big a deal. Having been a contractor in the boom years in Silicon Valley, I was used to working 3 contracts simultaneously, on projects that were the bleeding edge. It was an exciting time. And I made lots of money. Didn’t save a penny, but bought lots of musical instruments as music was my passion. Went to expensive spiritual retreats as my spiritual path kept me in search of healing all my childhood wounds, and owned half a house that I considered my nest egg for the future.

This second year has been spent reading novels online and playing solitaire. Occasionally a project appears that requires my attention, but they are few and far between. The morale in the company is in the toilet. People’s egos have been ground under by the owner, who is a narcissistic control freak. I am the only professional female in the company. All the other women are in support roles. I feel like I have stepped back into the 1950’s. This place is the last place I ever thought I’d find myself working. I had dreams of starting something new when I moved here, of somehow finally getting away from the computer industry. But after two years of sending out resumes for all types of jobs, this was the only thing I could find that paid enough to support both myself and my wife, who is on disability. It also offered multi-state insurance, allowing her to continue to see her doctors in her home state who have been keeping her alive these past 6.5 years.

I felt very grateful for this job that first year. Now I feel guilty for sitting here collecting a paycheck for very little output. I feel disgusted to be in a place like this after being part of the exciting Silicon Valley boom. I also know that Silicon Valley is no longer like it was in my day. Even if I still lived there I wouldn’t be doing what I did back then. I have lost my enthusiasm along with all the other beaten-down, depressed people working here. No one ever thanks you for your efforts. No one gets pay raises. There is no real HR department looking out for employees. There are under 50 people here. They run lean and mean and actually yell at people and threaten them when the mood strikes them. There are no employee guidelines.

And then after 8 hours in that environment, I drive home to my wife, who has been dealing with Stage IV Lung Cancer for 6.5 years. She is doing very well at the moment. It’s all about the moments. We live from test to test. The latest round of tests were so good that she doesn’t go again for 4.5 months – a new record! I never know how much energy she will have when I get home. Years of radiation treatment have caused overwhelming fatigue, and zaps to her brain have limited her short-term memory. We might have a wonderful, deep discussion, but I never know if she will remember it. I never know if she will have an appetite. The daily chemo pill ruins her appetite.

I haven’t played music since I moved here almost 4 years ago. My drums and harp are gathering dust. I used to suffer if I didn’t play something. Now, I just don’t play at all. I just started reading books again. I am an avid reader, but just couldn’t bring myself to open a book until the last 6 months. I berate myself for not putting in the effort to get back to my music. But mostly I feel tired and overwhelmed with everything I have had to do these past 4 years to redo my life. Too exhausted to drag myself back to center. But I really need to. I really want to.

So in the midst of all this, who can I turn to for support? Certainly not myself. I feel very much alone in the world. My wife, whose kindness saved my life, has her plate pretty full. My friends in the West have full plates too and not a whole lot of understanding for my current life. And local friends? Who has the energy to find them? And forget my family. They were never there for me. My brothers were raised by the same parents. One brother died last year. The remaining brother is a shell of a person.

I have no choice but to make peace with myself. I really need myself at this point in my life. There is no one else. I need me to be kind, supportive, patient and understanding. It might take the rest of my life to get there. I guess that’s why they call it an inner struggle.

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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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Tomorrow Is Another Day, Really?

In the midst of all my processing about death as far as my family is concerned, I am still the caregiver for my wife, and her Stage IV Lung Cancer. Her brain has been zapped with radiation 30 times in the past 6 years. That’s 30 individual zaps to 30 specific brain lesions. That, in addition to the radiation they threw at her chest 3 years ago, leaves her very fatigued and a little fuzzy in the brain department. So she usually asks me to help her with big things. Like last night.

We went to the car dealership so she could lease a new car. Her car is 10 years old and not really suited for New England winters. She settled on a Subaru Forester. We got them to give her everything she wanted in the monthly payment range she wanted. I hate car places. You can’t just walk in and buy a car like you would buy a dress off the rack. All that dickering is such BS. But this place didn’t do that, which was a huge relief.

Anyway, we get to the part where they are telling us what will happen in the three years when the lease is up. The great deal she will be able to get for the next car she will lease, etc. And I am sitting there thinking, three years is a long way aways. I am thinking that with a lease, I can just return the car after she dies. I don’t have to deal with loan payments, etc. Really awful, dark thoughts. I hate those thoughts. I did not share them, but I know she was thinking the same things.

How many more tomorrows? I know, in reality, any of us can be hit by a bus, get a massive heart attack, etc. But we get to live blissfully in denial. When the Sword of Damocles, that would be the cancer, is dangling over your head, there is no blissful denial. There is only this moment. That’s all you got. That’s all you can be sure of. And you better make the most of that moment.

So she will pick up the new car this week and drive it blissfully south to visit her 5-month-old grandson. And I am very happy it will be in the new, all-wheel-drive Subaru, with the best safety rating. Tagrisso (daily chemo pill) plus Subaru equals more time, more bliss.

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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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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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Diving

So it turns out I really don’t understand grief as much as I thought I did. I thought it was just lots of crying and maybe some depression. Not exactly. I have lost the desire to do anything, to create anything, to fix anything. I no longer have any dreams of a future. No goals. No plans. Once again, there is no g-d. No comfort. When I was 8.5 years old, my maternal grandmother died. I became an atheist on the spot. Didn’t embrace g-d again until my 30’s. And here I am once again, doubting any spiritual presence in the world. But now I know it is because my heart is all shut down. Part of the grieving process.

So, what is it all for? Life has become of series of losses. At my age, I understand now, it is just the beginning. I am only 59. I don’t feel old enough for this to be my new reality. Nothing prepares you for this. They don’t teach you about death in school. Our society is so afraid of death. No one talks about it. I got three days paid leave from work when my brother died this past August. So, you are so supposed to deal and be done with it in three days. Who are they kidding? Some places give you 6 months when you birth a child. As with everything else about making a living, you are supposed to check your life at the door when you enter the office and resume your worker bee status. The disconnects in our society are frightening and maddening.

I alternate between feeling a sadness well up in me for strange reasons, or just feeling dead inside. And part of me feels like I have to keep my spirits up to be a good, supportive spouse to my wife. But I know it is very important to make space for me and my feelings and process. Yesterday, my cell phone rang from a strange number from my remaining brother’s area. It was his doctor’s office. They had called me by accident. I am his contact for everything. He has never been married. I am his executor and all that. Scared the crap out of me. I called him later to find out it was just all positive results from his annual blood tests. But for that moment when they called, all I could think of is, another loss now? Who’s next? My wife? My brother? I can’t deal with one more loss right now.

I tell my dog, who is 8.5 years old, that she has to stay healthy. She is my rock. My one constant. I brought her with me when I drove across country. She has been with me since she was 8 weeks old. She keeps me going. Makes me go out for walks, regardless of the weather. Animals know how to do death. When the body is done, they are done. They have no qualms, no issues. They just go. They smell a dead body, they walk away. Nothing for them there. They know the soul has gone. Ah, if it were truly that easy.

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