Caregiver Syndrome, Part II

December 18 of 2014, we got the official diagnosis of my husband’s Stage IV cancer…not what I wanted for Christmas. In the past 11 months, he has had 118 doctor appointments. He is cancer free at this moment. Just three weeks after he completed 35 radiation treatments and 7 rounds of chemo, he suffered an abdominal aneurysm–and survived. The majority of people who have an aneurysm die. He was fortunate to be airlifted to the hospital, and the vascular surgeon was standing on the landing pad when he got there. He has had the best of care. Although he has lost 40 pounds that he didn’t need to lose, has a bad case of chemo brain fog, and says he has about 65% of the energy he used to have, he is just lucky to be here, and I’m lucky to still have him.

This has been one of the most emotional times of my life. Fear, shock, anger, denial, worry, and every other negative emotion has been my companion for the past year. There have been a lot of highlights, mainly from the outpouring of love, concern, and support we have had from friends and family and even total strangers. I often think of our lives in terms of B.C.–Before Cancer.

I didn’t know there was any such thing as Caregiver Syndrome before I became a caregiver. Even though he is well at this time, I’ve still got the syndrome. I still worry. I cringe when I go to the mailbox because I know I’m going to find another medical bill that I don’t know how we’re going to pay. I’ve spent the past year fighting battle after battle with our insurance company, filing appeals, and begging them not to deny payment for services and to extend continuity of care after they dropped the Carolinas Health Care System from their network. 6 of the 8 doctors that have been involved in Champ’s care were members of that system. It has been a nightmare.

I’m a control freak, and I hate it when something is beyond my control. His health is beyond my control. Our finances, at this moment, are beyond my control. We will go to our grave thousands of dollars in debt from this experience. I have felt like I’m personally out of control. I’ve never been a crying person, and in the past year have probably shed more tears than I’ve shed all together in my entire life.

Some good things have happened, in spite of it all. We made the decision to downsize at THERA-SSAGE–not close the business–and Champ has been able to start doing massage appointments again. He had to retire from carpentry after 45 years, as the physical labor of it is just too much for him. He still sleeps a lot. Some days he goes from the bed to the sofa and back again, and that’s it. That’s okay. Sleep is restorative. I accepted a new job as the Massage Division Director of Soothing Touch, an international family-owned company that manufactures massage and skin care products. They’re based in New Mexico, but I get to work at home, and I am traveling a lot for them. I love the products, which I had been using for about 7 years before joining the company, and I love the people I work with. I curtailed a lot of my teaching activities this year, but I managed to do three book revisions while Champ was sick…many times I took my laptop to the hospital and worked on them while he was receiving his treatment. Where there’s a will, there’s a way. I hired an office manager to run our clinic so I could bow out and focus my attention on the new job. I have been teaching professional ethics for many years, and I was inspired to create a new class on The Ethics of Working with People with Cancer.

I have a new appreciation for cancer patients, and for their caregivers. One of my friends who beat breast cancer a long time ago said to me that she figured out while she was sick that she would much rather be the sick person than the family members who were caring for her.

When you’re a caregiver, you put everything else on the back burner. I know I did. I stopped getting regular massage. I got depressed. I suffered from anxiety. I alternated between stress eating and not eating at all because I was stressed. I either wanted to cover up my head and sleep, or laid awake worrying. It’s been a journey, and it’s not over. Champ will receive PET scans every three months for the next five years. He will have the camera put down his throat every six weeks for another six months. He goes to have his chemo port flushed out every month. He sees the vascular surgeon for regular ultrasounds. He has appointments just to get weighed so they can make sure he is at least maintaining and not losing any more weight. It’s still a little shocking to me to see his changed appearance, but I’ll take him skinny rather than not having him at all.

Every time I hear of another person who has been diagnosed with cancer, I just cringe…for them, and for their loved ones. All you can do is the best you can do. I just keep putting one foot in front of the other and hoping he stays well and continues to get his energy back, and that the brain fog lifts. I still have moments of fear, depression, anger, and the whole gamut, but those are outweighed by the gratitude of still having my husband. If you’re going through this, or have already been through it, you know what I mean. May peace be with you.