Category Archives: cancer

The Monster Wakes UP

28 Sunday Nov 2021

Posted by in cancer, Uncategorized

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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.

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?

Catching My Breath

02 Monday Jan 2017

Posted by in Autism, cancer, Uncategorized

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For the third year in a row, I am taking a vacation during the first week in January. In January, I get a new supply of vacation days. This year, it’s four weeks, thank God. My husband has been ill since October 2014, when he had a tumor on his bowel that caused a total blockage. He had surgery, but recovery has been slow due to his other health conditions.  I have been his caregiver since then. He has been feeling relatively well the last year. He does some household chores and drives our daughter to work.

This summer he was diagnosed with bone marrow cancer. We have spent time going to University of Michigan to be evaluated for a bone marrow transplant. He doesn’t qualify due to his other health conditions, overall weakness, and struggle with malnutrition.

Since October 2014, I have spent most of my vacation time on appointments for him. So it may seem lavish for me to spend some of it on myself. Because that’s what this is. A break from work. A chance to regroup. To do some fun stuff like go to the theater and watch a movie, crochet, scrapbook, and organize our condo.

Last summer, after his diagnosis, we decided (we were led, really) to go ahead and help our 30-year-old daughter buy a condo with the idea that we would move in with her and pay rent to her. She had been paying rent to us for several years. She was enthusiastic about this idea. We started talking about it on July 3. She signed the mortgage papers on August 11 and we moved on August 20. Six weeks. We put our house on the market in October. We sold it in four days, and closed two weeks later. It has been an amazing how God’s hand was evident in this move. God’s people helped us move, and helped us throw away or give away more than half of our stuff. What a weight off of our shoulders.

Late summer, Ralph had to have two transfusions. This is a sign of his cancer progressing. However, his doctor has adjusted his chemo so that he stays just above transfusion level while controlling his platelet level to some extent. Too many transfusions and blood letting has to happen or medication to take down iron level. Two weeks ago, he had an abdominal CT scan to check for Crohn’s disease because of digestive issues that are robbing him of nutrition. No Crohn’s, but the radiologist did note that his liver had a small lesion. His GI doctor told him it was nothing to worry about. I asked his PCP to send me a copy of the test results. It notes that the lesion/liver should be watched for metastasis, and the PCP said he should have another test. I keep this information to myself. It may be nothing. But the fact that he has bone marrow cancer indicates it needs watching.

As I think about 2017, I wonder how soon chaos will enter our lives. Yet the thing that I must do is trust God. In the midst of our storm, He has been faithful to us. Faithful.

May you have a blessed new year!

Ann

Blessed is the man who trusts in the Lord,
And whose hope is the Lord.
8 For he shall be like a tree planted by the waters,
Which spreads out its roots by the river,
And will not fear[a] when heat comes;
But its leaf will be green,
And will not be anxious in the year of drought,
Nor will cease from yielding fruit.

Jeremiah 17:7-8

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Provision

21 Wednesday Sep 2016

Posted by in Autism, cancer, faith, Health Crisis, Miracles, Thankful

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On June 10, 2016, Ralph received the diagnosis of myelodysplastic syndrome (a rare bone marrow cancer). He started on chemotherapy the next week. We were told that his prognosis was six months to two years to live. Before he started the chemo, we were told that any fever of 100.5 and above was a reason to call the doctor, day or night due to his significantly impaired immune system.

Someone said to me on a support group Facebook page “dust will be your husband’s enemy.” That shook me. We need to move, I thought. I remember going downstairs to do laundry and looking up at the rafters in the basement with dust all over them. I stood at the washer and I prayed, ” Lord, what am I going to do?”

God heard that prayer. Wrapped up in that prayer was the thought, How will I care for my husband in this house?

And it was as if he said, ” Now you will see what I am going to do.”

Saturday morning, July 2nd, I suggested to Ralph that he could take some money out of his 401(k) to help Erin with a down payment on a condo. He agreed. The next morning, he said to me, “I’m sorry to disappoint you, but don’t think we are going to be able to find a condo.”

“I think God will provide a place for us,” I said. “Look how He has provided for us in the past. He provided a way for you to go to college and graduate with no debt. He directed us to move into this school district where our kids got the help they needed for their autism. He provided a job for me before the kids went to college. He provided the money our kids needed to go to college, graduate, and kept us safe during that time of taking them back and forth to school. Don’t you think that if God provided all those things, He will provide a place for us to live in our time of need.”

Ralph went to the computer. “I’ll look, but I don’t think I’ll find a place.”

“Well, here’s a place. Two bedrooms, two baths. Maybe we can go over and look at the outside of it. To see where it is located.”

I then sent an email to a real estate agent that we have been working with to find a condominium for Erin close to her job. I told her about Ralph’s cancer. She replied that she didn’t think we would be able to find a place. 45 minutes later, she called me and told me about the place that Ralph had found and we all went over to look at the inside of it.

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In a market so hot our real estate agent told us condominiums were getting 20 offers, God found us a condominium within 4 days of that prayer. On July 5th, Marie made an offer on a condominium in Kentwood, only two miles from the job that God provided for her a year and a half ago. At 6:30 the next morning, we received a call from the seller that her offer was accepted.

On August 11, Marie signed the mortgage papers for her own condominium.

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Then God also supplied the help that we needed tomove. Many from our church came to help us, sacrificing two Saturday mornings, one to help us move to the condo, and the second to clean out the house to get it ready to sell. Our backyard was a jungle.  The youth group came to cut down the brush and clean up the back yard.

What a testimony this has been to our neighbors and my coworkers. They say they were amazed at how this all happened so quickly.

I sat in church the Sunday morning after we moved, thinking about what God had done. It was stunning. God’s hand was clearly evident in all of this. Praising God through the tears.

Ann and Ralph.

 

 

Moving

09 Saturday Jul 2016

Posted by in Asperger's syndrome, Autism, cancer, faith, high functioning autism, Independence

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Well…

Things are changing quickly. On Saturday, on our way to go fishing, I said to Ralph, “We should take some money out your 401k to help Marie make a down payment on a condo.” He was open to the idea.

The next morning, I said we should look for a condo. He said there was no way we could find a suitable condo in our price range. I said to him, “God has provided for us in so many ways. He provided the money for you to go to college, and you graduated from college with no debt. He led us to this neighborhood where our kids received an excellent education in a tiny school district. Our kids were more successful than we could have imagined. God provided the funds for them to go to college. Don’t you think that if he has been faithful with that, he would be faithful for our need to find another place?” (I went on to list more instances of God’s provision for us in our lives.)

Then he went to the computer and started looking up condos for sale. “Here’s one we could afford. Two bedroom, two bath.”  That is, one that Marie could afford. We cannot get a mortgage due to our debt and medical bills. We showed the condo to Marie, and suggested we go over and look at the outside of it.

I wrote an email to a real estate agent that we have been working with for the past six months. I told her about Ralph’s cancer and wondered if Marie would be able to buy a condo, and we could move in with her and pay rent to her. She emailed me back and said that it wasn’t likely because the real estate market here is so hot…and some condos are getting 20 bids with some bids exceeding appraisal values. She doubted we could find anything soon.

45 minutes later, she called me and told me about the same condo that we were planning to look at the outside of. We went over with them and instead looked at the inside and outside of it. Nice. Very nice. It has a den/dining room with french doors that we could use for a clean room should Ralph’s white blood cell count dip to dangerous levels. Two full bathrooms, two bedrooms. A gas fireplace. And only two miles from Marie’s job.

Out in the car we all agreed that we liked it and should make an offer on it. We made an offer on Tuesday night at the full asking price. At 6:30 the next morning, our real estate agent told us that the seller accepted Marie’s offer, but only if we could sign the acceptance by noon. Marie did that. Now she is going through the process of getting the mortgage. Next week are the inspections. Then the appraisal. Then hopefully the closing not too long after that.

Then we move out of this old house. Now to choose what to take, what to sell, and what to throw away. The thought is overwhelming. Will is planning to take our old dog, Daisy, and one of the old cats, Chris. We will take the old cat, Mistletoe and the two younger cats.

Then we sell this house. We are downsizing. We won’t even “own” our own house. But we will have a place to live. And Marie, although she is qualified for this mortgage and has excellent credit, will find it easier to pay the mortgage and other costs with us paying rent. She could have the condo paid off fairly quickly. Marie told us a few months ago that she did not want to live alone. We are very fortunate to have her as a daughter. We never imagined that our daughter who spent 13 years in special education, but went on to obtain a college degree in accounting, would come to our rescue. We are praying that everything goes smoothly with no hitches.

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