Wednesday, December 30, 2009

Falling Down on the Job

I have been so wrapped up in my own activities that I have neglected the most important job I have--taking care of my husband. Seven years ago, when I jumped, or more accurately--fell--into that role, I approached it with a vengeance--monitoring, mothering, motivating, and micro-managing every aspect of his care and treatment. Not a morsel of food or medicine entered his mouth that was not researched and ratified by his vigilant sentinel. Like Mighty Manfred, Tom Terrific's ever faithful companion, I never left his side.

But as the years moved on, I resumed some of my normal activities and gradually began to shirk some of my responsibilities. This year I missed some of his chemo treatments (it's so blasted cold in there and they don't have wireless connection) and even missed a few doctor appointments. Ironically, as I became more absorbed in writing about the caregiving experience, I became less involved in the experience I was writing about. Then there was my return to the stage which took me away every night during dinner, leaving him to fend for himself. In my defense, he happily accepted my absence and enjoyed a month long diet of TCBY, Sonic Blasts, and DQ Blizzards. He even learned to give himself his daily injections because I was gone in the evening.

For four months, maybe longer, he has suffered from mouth sores and pain--common side effects of treatment. He asked each of his doctors and his dentist for solutions, but nothing helped. The problem has become increasingly severe. For six weeks he has complained about tooth and jaw pain severe enough to interfere with eating and to make him generally miserable.

Last week it occurred to me that maybe the culprit was Zometa the drug commonly given for bone mets. I reasoned that if Boniva and some of the osteoporosis drugs can cause damage to the jaw, Zometa might work in the same way, resulting in similar damage to the jaw. I even went so far as to suggest he might want to skip his next infusion of Zometa. BUT, I didn't take time to look it up because I was too busy with Christmas preparations.

Today, holiday over, company gone home, and me back at the computer, I checked the side-effects of Zometa. "Some Zometa side effects are potentially serious and should be reported to healthcare provider immediately, such as jaw or tooth problems!

Great. Had I done this weeks ago, I might have spared him needless suffering. I am so angry with myself. I don't know whether the damage can be rectified, but I am returning to my former watch-dog post. Jim may not like it but Brunhilde the nurse is back.

Thursday, December 10, 2009

Cancer's Rocky Road

on Sunday morning Jim spoke with his oncologist who told him that the treatments will continue indefinitely. This news wasn't such a surprise to me (the realist) but it was a blow to Jim (the optimist).

Jim had sent an email several days earlier asking for the plan,explaining how difficult the recovery is becoming and hoping that next Monday's chemo would be his last. In fact, I had him temper his remarks slightly because he was adamant that he couldn't take it much longer.

Dr. Rios said that he will need 2 more sessions of the regimen he is on now prior to our Houston trip Feb 1 for scans. THEN it is POSSIBLE that the length of time between chemos will be increased BUT a modified form of the treatment (maintenance) will continue indefinitely.

We are grateful that the drugs have kept the cancer at bay and that he has responded to treatment but after being declared cancer free (with all that implies) further treatment is a bitter pill to swallow (literally).

Living with cancer is better than the alternative but believe me it is not easy. I have spoken with several group members in the past 2 weeks who are similarly discouraged at the prospect of the relentless side-effects that accompany the very treatments which are keeping them alive. Pray for encouragement for all of those traveling this path, and for patience and understanding for their caregivers.

As I pray for those who lost loved ones to cancer last December and those who have lost someone this year, I am so thankful to have Jim here still--even though we have to plan our celebrations around chemo.