Monday, February 12, 2018

Advocating, Caregiving, Reality Checks and "What About Me". My Story Continues.

I always knew what it meant. I had a little medical training years ago. But the minute my husband's doctor said that his liver cancer has passed into the blood vessels around his liver, I knew what it meant, and everything he did not say. In order for said cancer to affect the blood vessels, the entire liver was already affected. Anything we did now was just to make him comfortable, or to buy our family some time. There was not going to be a "remission" now or later. And while I do believe in miracles, the odds in this case was not high.

My first thought, my immediate thought, the one that came after he walked into the room to share my husband's results?  My absolute first thought was , "What on earth will I do?". It didn't last for long, I shut it down pretty quick and immediately moved into advocacy mode. But the thought had been there, and it would rise again. My second thought, before I moved into becoming an advocate and caregiver was "What about Marc?". I know now that I wasn't the first person to think that, or even the second. Hope is a beacon, and denial has it's own virtues. But in this case I knew what would happen to my husband-and so, my mind went immediately to the rest. At least for a moment.

Shortly thereafter, I moved to the mode I would mainly be in for the next few months-that of care giving, advocacy and organization-the latter not being my strong suit. Because along with advocating and caring for my husband, I had a high school teenager to drive to school, home work to occasionally supervise, dogs and a house to care for and more. As well as helping and sometimes comforting a spouse who was (unsurprisingly) in denial and hopeful, and a son in shock.

Often when spouses become ill, the care giving and advocacy parts of the "job" come on slowly. There are times to find spousal groups. The disease begins with tests, which may take months. There is chemo, there is radiation, there is often some kind of remission or at least relaxed times during treatment. If the disease is dementia, or MS or Parkinson's, there is a general slow progression and partners and patients adjust, plan as to what will come ahead and how to deal with it.

My husband was beyond all of that. His cancer was fully involved if you well. His treatment and needs needs went from him being a pretty active normal guy to needing help with everything and being in pain in a very short period of time, with little if any warning (because of the Hep C my husband had his liver levels checked on a regular basis, and there had been literally no warning in previous tests). My life went from being an at home spouse and mom with a pretty independent high school student (albeit one unable to drive) and husband to going  pretty much all the time. I still thank the Lord for my twice a week house keeper who went from just doing the basics to walking the dogs, doing laundry and anything else she could do.

For a few weeks I drove my son to school, and then stopped by the hospital with things for my husband, and spent time with him before his treatments. Then I went home for a few hours, picked my son up after school, took him to see his father for an hour or so, ran out and got my husband milk shakes and reading materials and the like and then came home so that my son and the dogs could have a few hours of a normal day. Sometimes I went back to see my husband, sometimes we talked on the phone, some times he was too exhausted. Sometimes other people came from work to see him. I spent my time worrying, doing research and on the rare occasions when I would allow myself, looking to the future.

There were some things though, that I never worried about. Even once. I never , ever worried about money in terms of medical care of home care. From the time my husband was diagnosed until he died. I never, ever, worried about delay in care, cutting costs based on insurance, insurance denial of procedures or any of the other related things. When it came time for my husband to be at home, I never worried even once about approval of care giving. And while this particular missive is about the early weeks of my husbands care, I never worried about getting the pain medications to make him comfortable at any time. While this series of articles are about my journey and my husband's illness, it's impossible to write about, or discuss, without talking about the difference in health care systems. Which, from that first day in the hospital was excellent, superior, helpful, kind, and affordable.

Which is my way of saying that I write this series of posts to share my experience with others, perhaps help others and admittedly other reasons. I hope many people will read it. but as I write more and more about this illness and this journey there will be more and more health system comparisons. And if you are one of those folks who opposes universal medicine and believes that the US has the best health care, this series will disappoint you on many levels, so I need to say that.

My husband was being as positive as he knew how. His boss still called him for help on certain issues, and they were still having discussions about possible time tables for return to work at this point. My son's conversations revolved around things like "When dad comes home we need to do (fill in the blank)". We were all on the surface at least treating this like a temporary bump in the road that would get better after initial treatment-which included targeted radiation, oral chemo and other in hospital alternatives.

Eventually of course, the day came-the day when the doctor told my husband and I that they had done all they could and were sending him home. He should see his own doctor and go from there. At this point mind you, he was still walking on his own, although he needed to lie down often for the pain and he could not drive. He was weak but functioning, and perhaps because of this, I was ready to become that obnoxious wife who bugs the doctors and nurses and asks for every accommodation.

It was time for me to bring out the big, obnoxious advocacy guns. Something that was MUCH easier to do in a country that did not have miles of red tape before any treatment, and with a doctor who was on the same page-and whose husband was the chief of oncology at the university hospital of Frankfurt. On the one had, we were all ready to have dad at home, and he was ready to be at home, among his own things, and with his own people and canines. On the other, we knew that our journey had changed on some level. And that it might be time to tell family and the rest of the world, where things stood. Because at this point, no one else did. Including my adult daughter in the Cayman Islands, and my husband's parents in Texas.

Coming next: Experimental procedures, reality checks, and dealing with illness when you are far from others.

9 comments:

  1. What a hard situation to face, so tough. My husband died suddenly so I wasn't his care giver. Tough times.

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    1. We all have different experiences and I am grateful tht we had at least SOME time to go through the process

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  2. I so wish we'd come to our senses and look at universal healthcare. Can you imagine doing all that you did and having to worry if you'd lose your house or have to declare bankruptcy because you can't pay the medical bill. Or, even worse, you can't get the treatment or medication that your spouse needs to stay alive.

    Sheila

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    1. I feel so blessed to have been there durng that difficult time. also they have a completely different attitude when it comes to palliative care, although we are becoming better.

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  3. Having witnessed both my father and father-in-law go through prolonged bouts with cancer, I know that what you endured was not easy. Thanks for sharing.

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    1. You are welcome, thanks for stopping by

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  4. I have only been reading your blog a few months but felt compelled to comment. About 3 years ago an acquaintance of mine from a part time job was diagnosed with cancer and had been divorced for about 20 years. She had 3 young adult sons and no other local relatives. She was also almost dead broke. So a few of her friends wound up stepping up to the plate financially and emotionally. We took her for treatments, brought food and basically became her family while her boys continued on in law school and medical school. It was a nightmare , almost like a Dickens novel. Your husband was lucky to have you. Throughout this ordeal with my friend I saw first hand to people who have horrible illnesses and are alone. Family is everything. Sherri

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    1. Yes, a support system is so very, very import. Thank you so much for visiting and commenting!

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  5. I know this is hard to write. Thanks for sharing.

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Thanks for stopping by to comment. I love to hear from others, love to hear all points of view, and all comments are welcome. Just leave the profanity and insults at home, OK? Thanks!!

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