Category Archives: Uncategorized

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.

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

He’s Left The Harbor

27 Thursday Dec 2018

Posted by in Asperger's syndrome, Autism, cancer, Independence, labels, Transition issues, Uncategorized, writing

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“There’s a rumor we may need to go to London around the first of the year,” said Will, via Facebook Messanger to me, Ralph, and Patty. He sent this to us from Atlanta while on a business trip in November.

Will has definitely left the harbor. He owns his own home in another city. He goes on several business trips a year. This year he has spent time in New York City, Los Angeles, Atlanta, and probably somewhere else I am forgetting.

I started this blog in 2011 at Will’s urging. That is, I started writing again. After he graduated from college. He encouraged me to go to a local writing group, and there I learned how to blog.

From 2011 to 2014, I posted once a week on average. After Ralph’s health emergency in 2014, the blog faltered. I lost focus. My entries were not solely grounded in transition issues for young adults on the spectrum transitioning to adulthood.

I wonder what direction I should go from here.

Should I consider closing it down? Our kids are in their late 20s to early 30s. Will and Marie have jobs and mortgages. Patty is struggling for direction, but lives with her brother. Patty has said to me directly that she doesn’t want me to identify them as having any struggles growing up. It is important for their careers that they not be identified as ever having been on the spectrum. I struggle with this, because it has been so much of my life, raising them, and helping them achieve what they have. But I can see her perspective. On the other hand, she has told me that I need to write the story of our family. If I don’t, she has said she will. She wants to see my journals. However, I don’t know if she could handle the rawness of those emotions. I stopped journaling when they learned to read well.

Should I gather up these blog entries and put them in a collection of essays and publish them under the pseudonym of this blog. What if that becomes successful? Will they be “outed?”

If nothing else, this blog has been cathartic for me. It has helped me understand and process some of the history of our family. Our struggles, emotions, etc. But I don’t know if I should just shut it down. Throw it away. Act as if it didn’t happen.

And then there is the question of whether I should keep writing, and further, what I should write about. So pray for me, my readers and fellow bloggers. I don’t know what direction I should go now. Write fiction, stories, reviews, poetry, etc. What would I write about. I have been busy the last few years just taking care of myself and Ralph, who has cancer. But things have settled down since the diagnosis and subsequent move to the condo with our oldest daughter, Marie. So this spring I have planned to go to a writers’ retreat at the urging of my psychiatrist. He said I need to take care of myself and get away. But I am at a crossroad. I hope nothing prevents me from going to the retreat. It is paid for. I am still a member of my writing group, even though I don’t meet with them in purpose.

Will is out of the harbor. Patty lives with him. We live with Marie in her condo. Maybe it’s time to close the door on this chapter. But I don’t know what direction I want to go next. I just know I want to keep writing.

What say you?

Character and Determination

13 Monday Aug 2018

Posted by in Achievement, Asperger's syndrome, Autism, Uncategorized

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When Marie graduated from high school, the state rehabilitation agency sent her to a day long series of evaluations to assess whether my plan to take her to college was an appropriate use of state funds.

The report was devastating. 20+ pages long. I read it tearfully. However, I had read many similar reports about Marie throughout her education.

Some of her teachers in middle school and high school had honestly looked at her weaknesses, but they also looked at her strengths. She started reading at 15 through intensive instruction. The first novel she read was THE LORD OF THE RINGS at 16.

And she had an affinity for numbers. Her teachers encouraged this. In high school, she finished a 2-year course in computerized accounting in one year at the KCTC. She worked hard.

The Michigan Rehab neuropsych testing concluded that she could take beginning college classes like remedial English and beginning accounting classes, but she wouldn’t be able to pass advanced accounting classes. Even if she passed advanced accounting classes, she likely wouldn’t graduate. Even if she graduated, because of her autism, she wouldn’t be able to interact with clients.

Her sister, Patty, said to me at the time, that test does not measure hard work or determination. It doesn’t measure character.

So the fall of 2005, Marie started taking classes at GRCC. We signed her up for disability services at the college. She did well in all of her accounting classes and needed tutoring in language based courses. She graduated from community college in 2008 with an associate degree in accounting. We encouraged her to go to Davenport for her bachelor’s degree. She graduated from Davenport in 2010.

The neuropsych testing was correct in forecasting her difficulty in finding full-time work. She got interviews. But never the job. I surmise that the interviewers knew something was off. She didn’t make eye contact, her voice was very soft, she still had residual speech issues.

After a year of this, she looked up volunteer organizations, and found a volunteer position at Mel Trotter in accounts receivable. She volunteered without fail for a year. Her boss told her that if she volunteered for a year they would hire her part time. They hired her that fall. She worked full time during the giving season October through December and one or two afternoons a week for the rest of the year, for three years. And she continued to look for work and got interviews, but never a job.

In the spring of 2014 she told me that she was going to go in a different direction. Goodwill in collaboration with Peckham Industries was offering a course leading to IT certification. She was going to an interview for the program next week. Would I take her? Of course, I said. The job opportunity was at a call center at Peckham Industries.

So she started the course in August 2014. In October 2014, Ralph was hospitalized for bowel obstruction and emergency bowel resection surgery due to a tumor. Our Sunday school class stepped in and provided transportation so that Marie could finish her course. They also took Patty to her TA job at Cornerstone University. This was what we desperately needed. God provided this through his people. Ephesians 2:10 in action.

Marie passed the certification course on the first try. She went through the interview process, including an interview with the FBI for security clearance, and was hired with the first group of hires for Peckham Industries’ call center to provide tech support for the USDA forest service. They also have contracts for Visa tech support.

She has been working for Peckham for 3 1/2 years. Two years ago, she bought the condo we live in with her. She is now taking courses at the community college for a computer programming associates while working full time. She is getting straight A’s.

Marie’s life is testimony to the goodness of God. And the accumulation of all the good works performed by hundreds of people on her behalf and our behalf. This didn’t happen by accident.

*****

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:1013906724_10153813157811381_3887460422324417653_n