Category Archives: cancer

Dust Will Be Your Husband’s Enemy

03 Sunday Jul 2016

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Ralph is scheduled to meet with the bone marrow transplant team in two weeks due to his myelodysplastic syndrome, a blood/bone marrow cancer.

I’ve rapidly been educating myself on myelodysplastic syndrome (MDS), and stem cell transplants.

On a facebook page for MDS, I asked, “How do I prepare my house for his safety as the disease progresses, and if he gets a stem cell transplant?”

I received many helpful responses, but the one that shook me was “Dust will be your husband’s enemy.”

Our house was built in 1910. It’s had more than a 100 years to accumulate dust, mold, and other pathogens. Plus, there is the issue of my housekeeping.

I said to Ralph, “We need to move. This house isn’t safe for you, or won’t be within a few months, especially if you get the stem cell transplant.”

There is also the issue of Marie getting to work on her own. Do we need to move? I told Ralph that despite the hot real estate market, this is something we can pray to God about, and he will provide.

pathogens

 

Thanking God We Have Insurance

29 Wednesday Jun 2016

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So far the cost of treating MDS is close to $30,000 since June 1.

Yesterday, we received a call from the hospital that will be doing the Stem Cell Transplant, a procedure and follow up treatment that could run into the hundreds of thousand dollars.

If we didn’t have insurance, there would be no treatment available to us until Ralph qualifies for Medicare (October). Before October, he will have four cycles of chemotherapy at a cost of $40,000. That does not include the co-pays for every chemo visit ($175 per cycle), weekly labs, and any complications that may arise due to the course of his disease and side effects from the chemo.

Ralph has told me that he will not leave a load of debt in order to treat his cancer. If we didn’t have insurance, his outlook would be dismal. Most people at his stage of cancer die within two years from infection, bleeding, or acute leukemia. When the bone marrow fails, it fails to produce enough blood cells to supply the body. The bone marrow could rightly be called the source of life. In order to extend his life, our insurance will be spending a lot of money. Our part is the out of pocket limit (of $2,250 and copays, and extra expenses we are not aware of.

Sorry to be so dismal in my outlook, but it is important to think of practical things. We need to know what to expect. We will be traveling 137 miles one way to the treatment center our insurance will pay for in three weeks. There will probably be multiple trips if he is able to get the stem cell transplant. We don’t know if he will be eligible yet.

How will we get our daughter to work? Maybe she should move as we move forward with this?

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Hope Deferred – Marie

22 Wednesday Jun 2016

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

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Hope deferred makes the heart sick,

Yesterday, I took Marie to an apartment building in our town to look at a one bedroom apartment. Normally, this building has a long waiting list for one bedroom apartments. The rates are reasonable, and many residents are long-term. This apartment was available, I suspect, because it was being reconditioned. It is going to have completely new flooring installed. The apartment is modest, but pretty nice for a first apartment. It is less than a 20 minute bus ride to her job. Very important because Marie will never be able to drive.

Marie was going to write a check to reserve the apartment after work today. She was so excited to move into her own place.

Today, I received an urgent call from Denise from our health insurance company. She told me the local transplant center was out of network for them. If we chose to have Ralph evaluated there, our insurance company would pay 60%, leaving us on the hook for 40%, which would cost us hundreds of thousands of dollars. Completely out of our price range. The approved stem cell transplant centers are over a hundred miles away. We would need to travel and stay at hotels for Ralph’s treatment.

Marie will be 30 this summer. Her younger brother moved out four years ago to take a job in another city. He bought his own house a year ago. Her younger sister, Patty, moved to Ohio to pursue a graduate degree. She had to get an apartment.

Marie has been waiting to get her own place. She is the most impaired of her siblings; so her journey toward independence has been drawn out. Still, I believe she is ready. And moving to her own place would relieve us of the responsibility of driving her to her job (a precious job which took her four years to land after college.)

But she pays rent and transportation to us, which I am sorry to say is something that we need to make ends meet. Especially now that we will have to find a way to pay extra expenses for Ralph’s treatment. And we need someone to house sit our dog and our house if and when we need to be gone for a while. Our old dog is not nice to strangers. We need her at home. Yet she longs to be on her own. We need her help.

It’s not fair.

But she is willing at this point to help us. Of our children, Marie is the most selfless; like her father. I hope we can figure out a way for her to take this step sooner. And maybe this loss will turn out to be for the best.
    but a longing fulfilled is a tree of life. Proverbs 13:12

Hope-Deferred

 

Today It Becomes Real

20 Monday Jun 2016

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Today is Ralph’s first chemotherapy appointment. He gets Vidaza administered via his port (which was placed last Thursday).

For 22 years he has been going to the Hematology/Oncology Clinic to treat for his blood disorder, thrombocystosis. For 22 years, his bone marrow has over produced platelets, and the treatment has been Hydroxurea – an old cancer drug.  His diagnosis is now listed as thrombocytosis – primary; myelodysplastic syndrome – secondary.

I have sat in the waiting room with Ralph a few times in the last year, due to his illness caused by a benign tumor on his small intestine. When other people would come into the waiting room, I would think – that person has cancer. This person has cancer. Such a morbid thought process. Now when medical people and others see Ralph, they are not surprised that he has cancer. He is waif thin.

Last night I was reading through the side effects of Vidaza. Likely near term side effects: nausea, vomiting, fatigue, etc. Longer term side effects due to low platelets, low red blood cells, and lowered white blood cells – fatigue, danger of bleeding, and severely lowered immunity. So I need to take his temp if he gets any fever 100.5 and above, and call the doctor day or night. Watch for any kind of infection. Because of the risk of bleeding, he won’t be able to use a regular razor…I need to buy an electric razor.

It’s a steep learning curve.

Prognosis

15 Wednesday Jun 2016

Posted by in Autism, cancer, faith

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We have so many questions that we haven’t asked yet.

I know I shouldn’t go on the internet, but it’s almost irresistible.

Information on prognosis is depressing. The kind of cancer Ralph has is MDS (RAEB-1), with abnormalities in red blood cells, neutrophils, and playelets.The prognosis I have found is two years to live without a stem cell transplant, and four years with it. But I need to ask his treating doctors about that. His case may be different.

When my son Will was diagnosed with autism in 1994, the information was very depressing, even for extremely high functioning children. Yet, now he is a computer programmer for a very large company, has his own house, and flies all over the country.

At our first appointment with the doctor, we just heard what she said, but we didn’t ask enough questions.