The Monster Wakes UP

28 Sunday Nov 2021

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Five years ago, Ralph received a diagnosis of a bone marrow cancer called myelofibrosis. His hematologist/oncologist told us the only cure was a bone marrow transplant from a donor. She started him on infusion chemo the very next week after the diagnosis and set my husband up for an evaluation at the University of Michigan Bone Marrow Transplant Program a month later.

In the meanwhile, due to my research and materials we were given, I realized that our 100 year old home would be impossible to make into a place where he could avoid infections. Furthermore, he didn’t have the strength to take care of things around the house, and I didn’t have time either, since I work full time. So that summer while waiting for the BMT evaluation, we made plans to move to a condo.

However, the doctors at U of M told us that if Ralph went through with the transplant, he would probably not survive due to his age and other health conditions. They recommended instead a type of chemo that would slow progression of the cancer and control symptoms. Palliative care. So for five years, he has lived with cancer. We’ve been very careful, especially the last two years due to Covid-19 and its variations.

Every six weeks, Ralph has his blood drawn to monitor his condition and adjust his chemo. This summer, his white blood count and blast percentage began to change. He began to struggle with dizziness and fatigue. On Tuesday, I received a call from his oncologist asking us to come in the next day. The Wednesday before Thanksgiving. He’d had his labs the Wednesday before. I sat at my desk looking out the window at work. Not moving. Not thinking. For a few minutes. This couldn’t be good news. Asking us to come in the day before a major holiday with one day notice.

They told us the blasts (leukemia cells) are increasing in his circulating blood. They are concerned that he may be developing acute myeloid leukemia (AML). So this coming Wednesday, he will be having a bone marrow biopsy to assess the blasts in his bone marrow and to assess the amount of fibrosis in his bones.

When he received the myelofibrosis diagnosis five years ago, I went into high gear. Trying to plan what to do, how to take care of him. How to save him. I was thinking of a cure.

This time feels different. The changes in his blood correlate with the fatigue and dizziness he has been experiencing since summer. Five years later, there may be better treatments. It may be that they have something available that will continue to slow progress of the cancer. But therein lies a lot of uncertainty. He has told me that he doesn’t want to go through a lot of treatments to try to survive longer.

So we are waiting for the Bone Marrow Biopsy. His bone marrow biopsies in the past have been painful. They drill a hole into the hip bone in order to extract bone marrow for testing. Then we will see what they say. What they have to offer him. Life is on hold.

So Many Advertisements, So Little Time

12 Wednesday May 2021

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Of course they are ubiquitous. I like that word, ubiquitous. A fancy way of saying everywhere. In my mail. In my email. On Facebook. On twitter. On TV. I have to pay extra to avoid ads on streaming services.

I opened a new Google account for this blog. So far it is full of ads from WordPress. But it’s only a few months old. Given time and foolish shopping and it will have over 10,000 unopened emails from companies eager to get my attention. It’s the American way. My current main email address has 14,840 unopened emails. Most of them are ads. Some are medical notices. I could spend all day unsubscribing and it would barely make a dent.

I don’t have time for all these ads. It feels like a crushing weight.

That could have something to do with recently going back to work in the office after having worked from home 80% of the time. The commute sucks up another 5 hours a week. My returning to the office coincides with training a new employee. Just before I came back, my coworker announced he was leaving for another job. So I have double the work load I had before, I am trying to catch up with in-office work left undone, and I am constantly pulled away for training. I feel the crush of work overload.

And I am a caregiver. My husband lives with cancer. We’ve just gone through a three month period of miseries for him. An ulcer on his heel, seven skin cancer procedures. An average of three medical appointments a week. At first I thought I would be able to make up time lost from work by working late. But I found that I was unable to do so. I lacked the energy and mindspace. We are past that for now. Now we just wait for the next complication of his underlying bone marrow cancer.

So, I’ve begun quitting things.

I quit Weight Watchers. I don’t have time to keep track of points. I have to think about my husband’s dietary needs. So it’s Lean Cuisine for my lunches. Or salads. ,

I quit The Bulwark and The Dispatch this morning. I don’t have the energy or the room in my mind for politics right now. I can’t save the Republic from Trumpism or from Progressivism. Others, better equipped and more committed, will have to carry on the fight.

I’ve mostly quit trying to encourage people to keep themselves and others safe from the Corona Virus. For one thing, it’s a losing task. A fools errand. By this time, people are either willing to care for themselves or others in this regard or they are not. It’s not my task.

I went through my twitter account and unfollowed a bunch of argumentative types (about politics). I should probably also unfollow some of my favorites. Pare it down to weather, literary friends, and people I know personally. That’s the next task.

I’m reducing my TV consumption. I don’t need to know all the news.

And finally, I need to do some things to fill the well, as my writer friend, Cynthia Beach, advises in her book, Creative Juices.

So I joined Annie’s kit club (a response to advertisement) am making a sampler afghan. I’ve learned three new stitches so far. It’s expensive, yes. But it’s worthwhile for the instruction. I am enjoying doing something new. And crocheting is something I can do in waiting rooms. Easier than knitting or quilting.

I am reading on my lunch break at work. Currently “A Cup of Dust” by Susie Finkbeiner. I can’t take a break or a vacation right now. It’s nearly impossible. But I can take a break for my mind.

I planted flowers outside my condo. I hope some of them survive. We’ve had frosts the last few nights, so we’ll see.

If you read this, and felt you were lured into a whiner post, I’m sort of sorry. Sort of. But I hope you might also think about how to restore some balance. To get away from the madding crowds, even if you can’t really get away. To find ways to fill the well and restore your soul.

Cynthia.

Blocking Bullies

28 Tuesday May 2019

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Last night I made a decision for the good of my husband. I took his phone this morning and blocked one of my brothers from his account on Facebook. He doesn’t know it. He’s not internet savvy and I am not planning to tell him. Lord, forgive me. But I can’t convince him to unfriend my brother. So I blocked my brother for him. We don’t need the grief.

This is how my brother responded to Ralph questioning Trump’s behavior regarding North Korea.

“You should not display your ignorance so openly. This is Memorial Day weekend, when we remember the men and women who died in service for our country. Shut up with panty waste politics of self loathing.”

and

“Evidently you do not know anything the lame stream media hasn’t told you. Remember with respect those who are fallen. Take up your idiotic politics after the holiday.”

The second was in response to a civil question from Ralph asking what my brother’s opinion was.

Ralph was upset. And told me about it. I told him that I have unfriended my brother some time ago. I don’t need his, his wife’s or his son’s abusive treatment. I don’t know why they are so bitter. I told my other brother that I was going to block him from Ralph’s account. My other brother said good. You don’t need the grief.

Shortly after that my youngest daughter sent me a message. “Block him.”

Enough is enough.

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Incomplete Without You – a lecture by Erik W. Carter

10 Sunday Feb 2019

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I was unable to attend this lecture in person due to the necessity of working at my job. So I was delighted when I found the lecture on Youtube.

I have to admit that this sometimes brought tears to my eyes, in part, because our needs as a family were not often met in the congregation we brought our kids up in. However, we persisted, and our kids benefitted from attending and being part of the group. I think the hard part is befriending those with differences. For us, the inviting to informal groups was lacking. And transportation to events, especially as our kids aged out of youth group, was an issue. Even now, as we are attending a congregation that is actively thinking about meeting the needs of individuals with disabilities, we think about how our daughter will be able to attend church and church activities when we can’t supply transportation.

I recommend watching this wonderful video to spur your thinking.

Ann

Collateral Damage

07 Monday Jan 2019

Posted by in Achievement, Asperger's syndrome, Autism, high functioning autism, Independence, Transition issues

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Peckham, inc., obtains government contracts to employ disabled people and is affected by the shutdown.

Peckham is based out of Lansing, Michigan, and was founded by Ralf Peckham who was the head of the Michigan Rehab department. His original goal was to hire people with mental illness who faced significant barriers to employment.

Peckham opened their high tech call center in Grand Rapids 4 years ago. They are a nonprofit organization that trains and hires people with disabilities to do meaningful work at a high level of competence. These are people who our society and businesses have left behind. Have deemed unworthy of employment and the dignity that comes from being able to support themselves.

ADHD, sensory disorders, back injuries, blindness, autism, paraplegic and quadraplegia, depression, and anxiety are some of the conditions that qualify someone to work at Peckham.

Since Peckham opened here, many of these employees have become independent, bought their own houses or rented an apartment. A few have gotten married. They have moved on, finally, with their lives.

Marie was in the initial group of hires at Peckham four years ago. Since then, as many of you know, she has bought a condo, and we live with her. This condo is a blessing for us.

Marie graduated from Davenport University with a bachelor’s degree in accounting. Because of her disability, autism compounded by a mild brain injury at birth, she could not find a job for four years. She persisted in her efforts to find employment and sent out many resumes, volunteered for nonprofits, and eventually found limited part-time work at Mel trotter in accounts receivable.

So when the opportunity for employment with Peckham came up, she decided to go a different direction and try something new because her accounting degree was seemingly of no use. So Peckham trained her in tech support. She has real world certification. Tier 1 tech support, and she continues to train for additional certifications. She is also currently in the process of obtaining an associate’s in programming from grcc. She’s about halfway through. She’s a straight A student in this endeavor. I say this not just because I am proud of her. I say this because these are the kind of people that our capitalist system misses out on. UnEmployment among capable people with disabilities is multiple times the general level of unemployment.

So yesterday because of the government shutdown, 30 people were laid off at the Grand Rapids Peckham location. Marie’s hours were reduced to 30 a week. As the shutdown goes on, she could be laid off as well. Wednesday she had one chat in 7 hours. Yesterday 2 chats. She has training and experience in several areas at Peckham, plus seniority. Over the weekend she used two vacation days so others could work.

The government agency she primarily does support for, the US Forest Service – the firefighters who fight the fires in California for instance, has laid off most of their employees. That’s considered a non-essential government service.

 

The government agency she works for primarily provides tech support for, the US Forest Service – the firefighters who fight the fires in California for instance, has laid off most of their employees. That’s considered a non-essential government service.
After Marie had worked for Peckham for a year, we spent a year trying to help her become independent through buying her own condo or renting an apartment. We toured apartment complexes and condos. We came close to signing a lease and to making an offer on a condo, but stopped at the last minute. Then Ralph was diagnosed with cancer. At that point, we made the decision to help Marie buy a condo with the understanding that we would live with her and share the expenses. And a condo just happened to be available. I’m so thankful we have this arrangement. She has some cushion. I know she’s anxious as anyone would be. we are doing okay for now. But I think about the employees who have their own apartment for the first time or are supporting a family.
And I say all this just in case you don’t know anyone who is affected by the shutdown.
We need to let our president and our representatives know they should work toward a real compromise. President Trump said in a tweet a couple days ago that a shutdown didn’t matter that much because it is mostly affects Democratic employees. I’m sure there are some conservatives that are affected as well. Aside from being tone deaf, that demonstrates contempt for ordinary people.
The employees at Peckham are not federal employees. They are collateral damage that has not been reported on in this government shut down.