Thursday, December 24, 2009

Upbeat, downbeat and just plain beat

A few months ago, placed Cancer Banter on its list of five "best blogs for cancer patients and survivors." I ordinarily wouldn't mention this, but the description calls Cancer Banter an "upbeat blog."

This is true for the most part, and, believe me, I work at it. From the beginning I've tried to be honest while putting a positive spin on the bleakest of circumstances. Nonetheless, I've never wanted Cancer Banter to be simply upbeat; I want it to be an accurate account of my experiences. If for no other reason, I want to look back and think, "That was a terrible time, but I struggled through."

But now it's been nearly a month since I've written. The upbeat part of me wakes up every morning and thinks, "This is the day that I turn the corner." The downbeat part of me wonders irrationally, "Am I relapsing?" The just plain beat part is sleeping a lot.

I first went to the ETC (City of Hopes emergency room) on December 4 with a 104 degree temperature. I was given steroids and antibiotics through the IV and then sent home with an oral prescription for six and seven days of the same drugs.

Two days later my temp. bounced back to 104, but I felt well as long as I was on the steroids. I saw Dr. Forman two weeks after the visit to the ETC, and my blood counts and temp. were normal.

It's now been two weeks since that visit, and my temperature continues to be a bouncing ball, climbing to as high as 100.8 in the afternoon. My exhaustion level is an 8+ on a scale of 1 to 10.

The upbeat me says to just wait until the next appointment in two weeks, but the downbeat part wants to sound the alarms.

Friend and fellow City of Hope patient Nancy Sakakura (now that's one upbeat gal) made my day on Tuesday when she drove up from Orange County with a special gift: an EOS cap. Even when I saw that the gift was a cap, I didn't guess that it was the coveted EOS one. (When I'm feeling better, I'll take a picture of me with the cap and post.) Special thank you to Heather at EOS Estate Winery, who donated a cap to Nancy and me when Nancy shared my story. Nancy added to the gift by finding the perfect T-shirt from the winery - a nice French fitted tee that says "Live each day" on the front and features the graphic of a wine glass on the back.

Both the cap and the Tee are enough to make me feel . . . upbeat. I can't wait to wear them to my next City of Hope appointment.


marinik said...

hang in there...sending lots of love and a big hug, can't wait to see the cap and T on you :)

Faith Berry said...

Your blog is both upbeat and real. Both are incredibly important. No human has only one face.

Hope the temperature upswings calm down and the energy swings up!

Petrea said...

You're on my mind. Any time you want more clementines just shoot me an email. I deliver.

Trish said...

uhm, do I need to be the one to point out the temps could be hot flashes or power surges?!?! ;-)

you are upbeat and go ahead and ring your own bell...glad I'm not the only one who noticed!

I didn't start out thinking I'd post some of the things I did---some posts are better than others and several friends have appreciated hearing the stories and going back to the timeline to remember what I went thru.

Yippie on the EOS cap and tee!

Do what you feel is right in your heart---if it is time to go back to CoH and get them to pay attention to you feeling like cr@p, do it. You're a tough woman, but get them to take notice---feeling like this isn't worth suffering thru longer than need be.

I know you and a few others of us are worried about relapses---for ourselves and others.

Think positive---maybe it's "just" a long, weird H1N1 virus rebounding around inside of you?

or, the lack of the animals for the time you were in Newport?

Or maybe it is something less bright.

Whatever it is, know we're all here for you.

my wv was:'re one gal who can cope!

susiegb said...

Oh Susan - you do know we're all like that! Anytime any sort of 'sickness' comes, it can be like christmas for the negative part of my mind!! And it's as though being sick gives you less strength to resist/see the ridiculousness of your (one's) thoughts!

Your doctor said your blood counts were normal. Normal is good in these circumstances!

Enjoy the holiday, try to leave bad thoughts behind (or follow some of Wendy Halpern's suggestions as Ronnie did!) ...

Wishing you lots of calm enjoyment this holiday season!

Ann said...

Don't you just love Nancy? Susan, your amazing attitude and joie de vivre come through loud and clear with every word you write. Focus on feeling better and if you have to become a permanent fixture in your doctor's office in order to get this solved, then do it. You're important to all of us and we love you, so please look after yourself. Sending you virtual hugs and lots of love.


PS, my word verification is "unwar". Crazy. Love it.

Susan C said...

Thanks, everyone. I really appreciate all of your feedback, support and love.

I always thing of Ronni (, who often writes, "I didn't feel like [fill in the blank], but I did it anyway." I need some of that.

Susan C said...

Oh, and, Trish, Santa Claus brought me that special "gift" several years ago.

Ronni Gordon said...

Downbeat upbeat downbeat upbeat...I know the cycle. It' hard to be upbeat all the time, and I think it's OK to remind ourselves that it's OK to be downbeat even though we might not get adequate "permission" for that. I also know what you mean about mysterious ups and downs with symptoms or temps. When things are "off," that leads not only to frustration but also to worry about relapse. (I've been dealing with this lately and have an appointment with my social worker next Monday. Maybe you should make an appointment like that.) Well, I'm sure you also think a lot about the great things these doctors do. Stay positive! Overall it sounds like you're doing great and these are just little bumps in the road.

altadenahiker said...

Upbeat? Speaking for myself, when you report feeling good, you seem to be on top of the world. I get a vicarious fist pump out of it.

But your blog is like an endurance hike, sometimes it's hard. But my money is always on you.

Barbara Roth said...

I agree with Trish if you feel downbeat and plain beat go have them look at you. You are one to be taken seriously. Also, what about trying some of those bodymind treatments that helped a bit last year? Sure hope you start feeling better soon. By the way, we haven't heard any news about the job in S.D. yet.

Nancy said...

My dear Susan, It was truly my pleasure to bring you the hat and shirt. I think I was excited enough for both of us and then you let out the high pitched scream when you saw it was from EOS Estate Winery. I totally loved your reaction. You are a gem and I wish I could help you feel better. Rest up and please consider the comment made by Trish... go back and make them understand how you are feeling. I saw you and I would march back to COH with you in tow if you'd let me. You need medical attention girl. Please don't wait. Love you lots.... nancy

Trish said...

Sus---I suspected, but I figured I'd inject some humor and "solve" the problem quickly! ;-) were it only that easy.

don't make me come visit and drag your butt to CoH...with this only 1 opposable thumb thing still taking up my time---my gripping ability is limited and I might have to resort to a meathook and that would just be messy.

give a call to the docs, get in sooner than later---they should get the concept that if you're asking to come in, there is probably a good reason for them to find you space in the schedule.

am here if you need someone to listen or kick your tuchis. you're in our prayers.

L Barlow, AIA said...

Oh, but you keep popping up with the best ripostes on Petrea's site, so you've still got the old vibe going. And I see you're still in there pitching for the YWCA.

Best to ya in the New Year, and hang tough.

Susan C said...

Thanks, Ronni, AH, Barbara, Nancy, Trish and Laurie. You're such boosters.

I thought that I was going to comment on Monday that I wrote to Dr. Forman to report my symptoms, but. . .

I truly do feel that I am now becoming incrementally better every day. Honest! Far from 100%, but I feel myself getting there. I no longer need a mid-day nap to get through the day. My temp. has spiked to 101 only once in the last 3 days.

And, Laurie, I'm glad I make most of my living as a writer. Even when I feel like I'm on my death bed, I can write. PR, on the other hand, requires a lot of physical energy.

Pasadena Adjacent said...

I'm pleased to hear your feeling better and congratulations! You have an inner light that comes across.

Petrea said...

Happy New Year, Susan. I'm glad to know you're feeling better and I know that trend will continue on into 2010.

Nelle said...

I am sorry that you are still having the temperature issues. After I took the steroids for my breathing issues in late September is when my temperature started up. I keep wondering if you have some low grade infection somewhere as I did. Your blog is REAL. Cancer is an emotional roller coaster and anyone who would only show the UPBEAT part would be doing a disservice to another patient. I would keep records of your temperature and perhaps consider consulting an infectious disease doctor. They find patterns that have meaning to them and that's when I finally got the help I needed. Just a thought. Happy and Healthy New Year my friend.

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