Thursday, December 2, 2010

When Patient Fatigue Sets In

I'll never forget my first day as a wide-eyed freshman at a small university in South Carolina. When I learned that one of my roomies was a senior, I gushed, "Oh, it must be so sad to know that this is your last year." "Believe me," she replied. "When the time comes, you're ready."

Fast forward a few decades to a post-stem-cell-transplant visit to the City of Hope. I was slowly (and reluctantly) weaning my way from three to one visit per week. When I learned that a fellow patient was there for her annual appointment, I felt like a college freshman all over again. I couldn't imagine a stretch of 52 weeks without an appointment any more than I could imagine leaving dorm life behind.

Funny how three more years as a student and a patient changes your perspective. By the time I hit my junior year, I was plagued with student fatigue. You know the drill - when you think you're going to scream if you have to write one more paper or attend one more lecture or eat one more meal in the cafeteria.

Now I have patient fatigue, but not the kind that comes from massive doses of chemo. I'm simply tired of being a patient. If I have to take one more test or see one more specialist or endure one more procedure or . . . you get the idea.

Unlike my early days as a student or patient, I'm not as willing to do research or ask questions, and that's too bad. I'm still beating myself up over a City of Hope visit in August. My doctor and I celebrated the good news of clean, cancer-free scans and pondered the bad news of continued weight loss (I tipped the scales at 106 that day) and a host of GI problems. When it came time to discuss the results of my bone density scan, the doctor commented that my bones were thin. I didn't bother to ask the obvious follow-up question: "How thin?"

Six weeks later, I broke my hip, an event that led me to once again ask, "How thin?"

Last week I got the answer to that question with a printout of my bone density exam. "Osteosporosis" was the headline. The results indicated that I was eight times more likely to break a hip than my counterparts with normal scans.

Would this knowledge have prevented my broken hip? I doubt it. But it does make me think twice about wearing slippery socks on hardwood floors (although my accident happened with bare feet). And it does remind me that, in spite of patient fatigue, it's important to pay attention in class.


Ronni Gordon said...

Hey, don't blame yourself for the fall. Sounds like you did all you could do, and as you said, you weren't wearing slippery socks. You don't sound like the reckless type doing all sorts of stunts! I don't think any of us ask "how thin?" (I have osteopenia.) I just tried to increase my weight-bearing exercise, try not to trip, and eat more calcium-rich foods. At Dana-Farber. they are talking about giving me some type of infusion. Have you asked about that?

Pasadena Adjacent said...

Are you still feeling fatigued? You certainly showed pluck in terms of getting back up and on the walker. You are a brave woman; and shiny bright too!

hows the baby english cottage coming along?

susiegb said...

What Ronni says sounds a lot of sense Susan. I was going to ask if your doctor had suggested what you could do to improve your bone density, but she's answered that question I think!

Think of the positive, about not feeling like a patient any more, and how far you've come! How far we've all come!!

Susan C said...

Ronni, Thanks for the tip about the infusion. I'm going to ask my doctor about that.

PA, I'm actually feeling full of vim these days. I'm just tired of being a patient. The "baby English cottage" is coming along beautifully.

Susie, Yes, we all have come a long way, haven't we? Thanks for the reminder!

Marc said...

I know exactly what you're talking about.

I used to be so gung ho, reading up on MCL, and learning of all the advancements until I realized there isn't anything new. All there is are rehashes of old stuff or slight variations on it, and what is new is so far down the road from being proven efficacious, what's the point.

I only glean the message boards on occasions, and I've even gone to 3 months visiting my oncologist(s).

I hesitate to change my monthly blood test routine, because I'm so superstitious, I know if I don't go monthly, my MCL will take a turn for the worst, and I won't catch it. So I keep going. Plus it's the only thing that seems of any value.

My only saving grace is I'm still mostly healthy, but if I'm already suffering from such patient fatigue (I've been doing this for 8 years and 8 months), I can't even begin imagine what you're going through, or what it's going to be like when [if] I become a real patient.

And BTW, look into Forteo for the osteoporosis. My aunt used that for awhile, and it seemed to be of benefit for her.

There's also Zometa and Aredia, but I'm not sure they would be applicable. They're used in the treatment of Multiple Myeloma, and there are some significant side effects, including potential kidney problems.

Best wishes,

Nelle said...

Susan, There are many medications for osteoporosis, my mother has taken them for many years. Can they give you something for that? My bones are fine except for the ones where I got massive radiation (my shoulder and sternum.) My sternum was so soft when the doctor had to "saw threw it" he said it fell apart and he was shocked at how thin he was. He triple wired it back together. I try to be very cautious but let's face it, accidents will always happen. We can take precautions and I do. I dont' life heavy objects anymore either. This year I have followed your blog and have found someone so full of grit that it inspires me. Hope you have a great trip to West Va. and a wonderful holiday season.

Ann said...

I think I suffer from the same malady. There are weeks where I think, "Really? More blood work, more tests, blah, blah, blah." I know it's all because of the frequency of my visits of late and that it will get better. I'm also osteopenic and my survivor's coordinator suggested walking 30 minutes a day to help build bone density. I know a lot of other patients who are taking fosamax or boniva for their bone density issues. It's definitely something you should look into. Sending hugs.

Idelle Davidson said...


I understand about the "fatigue" but when you're ready, ask lots of questions about bone meds. They're not all what they're cracked up (pun intended)to be.

Petrea said...

Susan, I'd have been tired of being a patient after a couple of months. You have a right to be tired of it.

As for the bone meds, I'm on Boniva. Now Idelle's got me worried. I'll ask some pointed questions on my next visit.

altadenahiker said...

One of the things about this blog that always keeps me coming back is the blend of pragmatism and optimism. That's a spirit I believe in.

Jean Spitzer said...

Sounds like, despite the fatigue, you're doing amazingly well. Inspirational, for sure.

Happy holidays.

Paula L. Johnson said...

Someone needs to change the design on that needlepoint pillow kit:

(The second part does not apply to bones.)

positive affirmation said...

I forgive myself
As I forgive myself. I leave behind all feelings of not being good enough, and I am free to love myself.

Rachel Pappas said...

Very humanly written. I think anyone who'se been through treatment can relate - or anyone who'se been burnt out for any reason. You give me good ideas for my website: I hope you and anyone interested in survivor stories and issues will visit. Wishes for good luck and good health. Rachel.

Katie said...

I can relate to you being tired of being a patient. I am a leukemia survivor. Half way through my treatment, I wanted to give up. I was tired of needles, nurses, and pain. I have a blog at for people to discuss the trials of cancer. I wish you the best with the rest of your patient career.

Chris said...

Any news on how Susan is doing?

Rommel Peter Fernandes said...

I hope that everything is okay. When will you be blogging again?
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