Tag Archives: cancer

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.

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.

 

 

What Will She Do With All Our Stuff?

24 Sunday Jul 2016

Posted by in Asperger's syndrome, Autism, faith, Independence

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Within a few weeks Marie will be closing on her condo. She will be a home owner at 30.

Then the three of us will be moving together into her condo. We are starting to clean out this house that we have lived in for 21 years as of August 4.

A few years ago I discussed the issue of estate disbursement in this blog post.

https://annkilter.com/2014/03/14/what-would-they-do-with-my-stuff/

This time, the question is no longer speculative. Our real estate agent, Jean, told us that the sale will probably close before mid August. This time, we are moving out of necessity due to Ralph’s cancer. In part because we need to move to a place with fewer maintenance issues; somewhere fresh. In part because we needed to move to a place that is closer to Marie’s job. So that, if we aren’t available to take her to work (likely at some point), she can get herself there. It is 3 miles from her job, a 15 minute bus ride. She could walk if necessary, although that would mean crossing a very busy street. From our current house, it is an hour bus ride. And walking would be impossible.

The job of moving is overwhelming. Decisions. Decisions. What to throw away, what to give away, what to take with us.

Two weeks ago, Will and Patty came to the house to get their stuff before I could have a chance to throw or give it away. Will will never have a reason to say, “I could have had a fortune, but my Mom threw my Pokemon cards away.” Ralph tells the story about his mother who gave away his antique toys when he was away at college. Of course they weren’t antique then. Will and Patty will be coming back next weekend to get more stuff, and to take Daisy, our dog, and one of the cats, Chris, home to Will’s house.

When Will moved out, he took things from our house for his apartment. We also bought a lot of essentials for him like spices, laundry baskets, towels, etc. When Patty moved to her apartment, we did the same thing. But when we move to Marie’s Condo with her, we will be bringing our household goods with us. There will be no need to buy a rice cooker or a toaster. We will have everything we need, and then some.

One of the extra questions I am asking myself as we get ready to move is – will Marie ever have a need for this…or will she have to get rid of it? Marie can’t drive, so getting rid of our stuff is a hassle. Some things are going in the give-away boxes instead. I have announced my abundance of some items on Facebook. I have found a few homes for my extra yarn, and craft stuff. I will still crochet, but unless it is a project currently under construction, I think I will give the rest away.

I’ve taken three trunk loads of stuff to Goodwill so far. Many more to come. I’ll sell a few things, like the piano, the microwave, and tools. I don’t have the desire to run a full-on moving sale. In the next few weeks, if it goes as planned, I will have gotten rid of 50% of our stuff. Marie is going to buy new living room furniture for her condo (she doesn’t want our worn out stuff). So we will get a dumpster and throw those items away. 31 years of accumulation. It will take a while.

 

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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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