Switching From Patient To Caregiver

My wife and I have been making back-and-forth trips to the hospital lately, but this time I'm just as worried about her as she has been about me.

I'm starting to understand better some of what Tracy went through when I was in the hospital for surgery to remove a carcinoid tumor. Tracy recently had surgery on her right knee to take care of some painful wear and tear.

I had a pretty good idea what she was going through, with the pain and the meetings with doctors and physical therapists. I went through something similar a few years back when I had surgery to repair a broken clavicle and replace a rotator cuff. So, I also had an idea of the pain and physical limitations she was facing post-op. It's tough to get even basic chores done when you're on painkillers that make you loopy and sleepy.

So, I stuffed the freezer with homemade chili, soups, pot pies, gnocchi, potstickers and anything else I could whip up, knowing that we'd need the supplies during her rehab. I started the project in late June, a couple weeks before the date her surgery was originally scheduled (it was later pushed back to July 19). If I didn't have to make dinner from scratch, I'd have more time to clean, run errands and take Tracy to her follow-up doctor's appointments.

I already knew the role of caregiver could be emotionally and physically draining. I have a better idea of just how difficult it can be, so I'd like to say thank you to everyone who has taken on that duty.

I didn't realize at the time that we'd be facing an extra challenge. Even as I was trying to take care of Tracy, it was becoming more and more difficult just to take care of myself. A couple days after taking my regular Octreotide shot at the start of July, my own health took a downturn. I lost my appetite and my energy. What I could eat, I had trouble digesting. I had a few dizzy spells, enough to make it difficult to get around. I could hardly get out of bed, much less turn on my computer to do my job.

At first I thought it was a reaction to the shot. Some of the side effects of the medication are:

• slow or irregular heartbeats
• gallbladder problems (stomach pain)
• pancreatitis (pain in the upper stomach or back, nausea, vomiting, fever, bloating, yellowing of the skin or eyes)
• thyroid problems (may be detected by blood tests)
• low blood sugar (headache, confusion, drowsiness, weakness, dizziness, fast heartbeat, sweating, tremor, nausea)
• high blood sugar (increased thirst and urination; flushed or dry skin; drowsiness)

I had at least three or four of those conditions for most of July, but I'm starting to think it was a case of exhaustion. The concern is that my exhaustion might have opened the door for the cancer to come back.

The news was enough to concern my oncologist at the Marin Cancer Institute, Dr. Alex Metzger, so he ordered a round of scans. We don't want to take the chance of missing something on the remote chance that the cancer has started to spread again.

It's funny to think that I might have actually worried myself sick over Tracy's surgery. I never wanted Tracy to worry about me when I was in the hospital. I tried to make her laugh and to be brave, because worrying wasn't going to do anyone any good. But when you love someone, you can't help but worry when they're sick or hurting. We worry because we care. And the more we love, the more we worry.

Tracy and I have a pact: I take care of her, she takes care of me and together we'll be fine. I couldn't have made it this far without her help, so I'll do anything I can to return the love.

If we weren't sick of hospitals before, Tracy and I probably will be soon. One day we go to Kaiser in San Francisco to see her doctors. The very next day we go to Stanford Medical Center to get my CT and other scans done. I know the Radiology Department there like the back of my hand, so it's kind of comfortable to go back there.

I'm confident enough that the news for both of us will be nothing but encouraging. Tracy is starting to get around better, but is still facing weeks of physical therapy. And for those who might have thought I had gone into hiding for the month of July, I'm on the road back now. There's a lot of work to catch up on, so I'm charging up my batteries.

So, don't worry. We'll see you soon ...

For more information on cancer and carcinoid cancer, consider these sites:

Carcinoid Cancer Foundation

Caring for Carcinoid Foundation

Carcinoid Cancer Awareness Network

Carcinoid.com

Stanford Medicine Cancer Institute

Cedars-Sinai Hospital, Los Angeles

Marin Cancer Institute

University Hospital, Basel, Switzerland

Jimmy V Foundation

American Cancer Society

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