Living Daily with Chronic Invisible Illness

Loving Someone with Cancer When You Have Fibromyalgia

My husband has cancer of the bone marrow called Myelofibrosis. He has been receiving blood transfusions for over a year. He was receiving them about every 14-16 days until this past winter when his body began requiring them about every 9-12 days; 2 units each time. 

As a Fibromyalgia sufferer, I deal with the ups and downs of daily living and how it wreaks havoc on the Fibro body. 

Add the stress of a loved one’s illness and you can quadruple that effect.  

My husband has Myelofibrosis. In this, his red blood cells are affected. They do not mature and subsequently, he is chronically anemic. He also has Hemocromotosis, which is iron overload. In his scant few red blood cells he has, there are 1000x more iron than the average person has whose red cells are healthy. Strangely, these two conditions are rarely seen together. To treat the one, you get blood. To treat the other, you give blood.  He cannot give blood because his red blood cells don’t mature. When he receives blood, the influx of iron it brings can cause iron overload, but he needs the new red cells to keep on going or his body’s red blood cells would eventually cease. We don’t want that! 

Myelofibrosis is considered to be a chronic leukemia- a cancer that affects the blood-forming tissues in the body. Myelofibrosis belongs to a group of diseases called myeloproliferative disorders.-The Mayo Clinic

It has caused my husband’s spleen to enlarge and a host of other symptoms. He is taking two medications to keep the spleen down and another to combat the amount of iron his body receives with the transfusions. 

Those transfusions give him red blood cells which provide him with renewed energy to keep going, but the amount of iron they bring causes his Hemocromotosis to escalate. This is an on-going battle that is now (on average) every 10 days.

(In a healthy person, immature red blood cells mature, live a while and then die off. His never mature, hence the need for transfusions. As those transfusion cells die off, his count diminishes and he needs more blood to keep going. It is a vicious cycle.)

My husband is a champ. He still works daily. He still looks like a normal, healthy person. Like Fibromyalgia, Lupus, etc., it is dubbed an “Invisible Illness”-the kind where people don’t believe you are actually sick…

We have tried over the past 5 years living in a relatively “as normal as possible” state. That means keeping as much of our lives as regulated as possible and keeping our family life going, including our family’s Bluegrass Band, running smooth. 

I do my best to pace myself to keep the Fibromyalgia levelized. Is this possible? 

Seemingly, no… 

Every 10+ days I sit with my husband for 5 hours or so while he receives his 2 units of blood. We visit, play cards, think positive thoughts…but the sitting upright can have catastrophic effects on my Fibro body that lasts for days. (I am sure the stress of it all does not help. Throw in the pre-menopausal hormones I am now facing plus the raising of three children (out of ten) left at home children-all girls left-ages 10, 12 and 15. Hormones all around me!!!!)

My battle with chronic, daily pain is a part of life for me. Fibromyalgia won’t kill me (although some days I feel like it could!) 

What my husband has will kill him. I get through my life of pain so I can help him; help with our lives together. Those catastrophic days are nothing compared to what he deals with. I try to pace myself and be ready for whatever comes our way where his cancer is concerned.

The Lord has allowed me to have this condition so I would slow down my life to accommodate my husbands new slowed down life with cancer. I will take the pain…one day at a time!

The Lord’s GOT this!

Blessings-

~The Fibro Momma of Ten

 

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