Remission…Knock on Wood

Posted on February 1, 2013. Filed under: Cancer | Tags: , , , , , , , , |

WhooHoo! I had a visit with Dr. G today, my oncologist. My monthly blood work came back with “nothing to talk about,” which is code for perfecto! Nice birthday present. I enjoyed seeing a few of my favorite nurses who were so much a part of my life last summer during treatment. Anyway, Dr. G said I’d be on the monthly dose of Atra for a year. We went over the list of my side effects: fatigue, goofy dry patches of skin, low energy and shaky hands, which have all improved by about 30 percent since stretching out the doses of Atra. He also said I could mess with the schedule so I don’t have to feel like crap on vacation. WhooHoo.

I’ll also have to have another bone marrow biopsy in April and after that I get to declare myself in official remission. Right now, Dr. G says I’m probably in remission anyway, but a clear biopsy will make it official. At five years, I get to be declared “cured.” I wonder if I already put in a year?

Evading Cooties
Early in this blog, I referenced a creepy feeling that I’ve had for most of my life. The “feeling” is a notion that some major health challenge would hit me in my fifties. If I lived through it, I’d hold out for age 88. Weird, huh. Some might say the expectation created the reality, but I think not. So this 59th birthday means, if something is trying to take me out in my 50s, it now has less than a year. It’s going to have to be a piano falling on my head or blowing out a tire on a one-lane mountain highway because my body has proven its ability to blast out cooties and I’m pretty sure it can take on most anything at this point. Such is life. After 60, I’m good until 88 and maybe even longer.

Paint and Cake
Last night I stopped and bought a yummy cake on the way to art class to share with my class to celebrate my birthday. What a great combo!

Advertisements
Read Full Post | Make a Comment ( 5 so far )

Making and Keeping Connections

Posted on January 28, 2013. Filed under: Art, Cancer, Just fun!, Poems | Tags: , , , , , , , , , |

Last time I wrote, I was anticipating a dentist visit. I’m happy to report that my dentist rebuilt the broken part of my tooth so no root canal will be necessary. Yay!

The Power of the Blog
A few weeks ago, I received a comment from a young woman who also had been diagnosed with APL. Within hours we exchanged emails, phone numbers and had a great conversation about our shared experiences. She lives in the area and will celebrate her two-year anniversary in a couple months. (Congratulations, Marci.) If you’ve ever suffered from ANYTHING, you know how rewarding it can be to share details with someone else who has gone through the same thing. Thank you, Marci, for sharing.

tret0808

Evil Potion

Tretinoin is Back on the Menu
Three weeks without Tretinoin and my scaly, red skin cleared up. I even had a little more energy. The achiness and fatigue still hung on, but I felt better overall. Amazing. Now, after another week of the evil potion, I am back to lying in bed until 11 a.m. and lathering on oodles of lotion. Urgh.

Since the drug is also used to treat psoriasis (in lesser quantities), I have now have great skin. Not that I have a skin problem, but there’s definitely an improvement. Now if I could just make it less scaly.

On an even brighter note, I went for my second haircut! I’m keeping the short look. It’s really thick, but the salt and pepper is not exactly close to my formerly dark blond hair. I’m wondering if this is the new color or the interim color. We shall have to wait and see.

Other than those symptoms, I’ve only had a few moments of chemo brain…like when I totally zoned and got a call from a friend I’d scheduled a lunch date with. She called me from the designated restaurant at the designated time wondering if she’d mistaken the time or place. She didn’t. I left the house and luckily was there in less than ten minutes. Sorry, Susan.

To Flu Shot or Not
With the doomsday reports about the flu epidemic, I considered getting a flu shot, but decided to pass. After all, my system has been pummeled by drugs over the past year and I think I’m better off risking it. I still feel a little guilty—kind of like I decided to leave the door unlocked. None of my doctors have even suggested it. They have asked if I want one, and when I say, “not really,” they move to the next question without even telling me to wash my hands. It’s like they want to tell me not to get one, but they can’t. So far, so good. I haven’t been sick…knock on wood.
IMG_6815Another Poem in a Painting
I started art classes again and last week, I finished another poem in a painting. This one was a challenge to lay down the poem in the piece, so we made some adjustments. Here’s the text:

Counteract
Who counts
the bodies?

How many missing limbs
equal one?
Which body bags,
lost tags
add to the tally?
Bodies that fall
seconds before the declaration?
or minutes
after the truce?

Who counts the body
of knowledge lost
in clouded memories?
Who counts
the piece in the parent
when the epaulets show
through the peephole?
Or the low voice on the phone
asks for his parents?
Who counts the child’s body
if it’s the enemy’s?

How many are missing in action?
Covered under smoldering ash?

Who counts the spirits
when bodies become armor?
when eyes become empty bowls?
when people become photos?

I now have about 15 paintings with one of my poems in them. I’m excited about getting my book of poetry together and will include them. I’ve got about 80 pages so far. That should be enough. One has to stop somewhere.

20130126_211001_resizedReliving the 80s
Last night Scott and I went to the Old Town School of Music for a student/teacher tribute to Madonna and Prince. It was pretty funny and brought back memories of my kids listening to Madonna songs. I’d read about it on www.gapersblock.com, which often has events that you’re not likely to find in the Tribune’s art section. The show was great fun. There’s so much more soul to a low-budget show than the big-budget program. However, we bowed out a little early. I was yawning and Scott had met his 120-minute limit for sitting still in one place. That’s another good thing about small productions: You don’t feel obligated to stay longer than you want to just because of the price of your ticket.

100_2715Pink Flamingos…Here we come!

Scott and I are SO overdue for a vacation, so we booked flights for a Florida fly/drive trip. Our friends are snowbirds and invited us for a visit. They live south of Tampa from December to March-ish so we are flying in and out of Tampa with a mega road trip through the state. I also have a friend in Jacksonville, so I am looking forward to seeing her and soon basking in some sun.

FlamingBirthdayCake1Birthday #59

This week, I will be 59. Geez. Creepy. Although, I’m truly lucky to have lived to be 59. Part of me wants to have a huge party and another part of me wants to roll into a corner with a candle  and a chocolate cake. I’ve always wanted a “garden” party, but a Chicago January is not the time to host an outdoor party. Then I thought maybe I’d have a 59-1/2 year party. After all, that’s an age when one can start eying those retirement funds, but that would encroach on my daughters’ birthdays, which both land in July. Plus, my oldest will be 40, which actually makes me feel older than being 60!  😛

I think I’ll save the party for the big 6-0 and settle for the chocolate cake.

Considering it took me a few weeks to gather up this much to say, I think my days are winter-slow. Oh sure, I have stuff to do. We finally cleaned up the holiday tree and ornaments, but the frenzy is over and it’s sort of quiet. I have learned to appreciate that.

Stay warm. Have fun. Thanks for reading!

Read Full Post | Make a Comment ( 5 so far )

Visiting the Maintenance Man

Posted on December 2, 2012. Filed under: Cancer | Tags: , , , |

The holiday decorations are emerging and I’m feeling that it’s weird to go to the Cancer Center when it’s cold. Definitely reminds me that I’ve spent a good deal of this year dealing with this leukemia thing. This week, I had an appointment with Dr. G, the first meeting since I’ve been on “maintenance.”

Maintenance is the long-term drug regimen that is supposed to keep the leukemia cooties from returning. Rather than a janitorial activity, it’s more like when you have your home exterminated, but the exterminators return every month to keep it bug-free.

I was very open with Dr. G about getting a second opinion from Dr. V, who basically thought Dr. G’s approach was fine. My understanding was that the plan was a condensed version of the “usual plan” because I could tolerate the drugs so well. The side effects made me wonder if I should. That was my primary thought as Scott and I found a parking place in the crowded Kellogg Cancer Center mini-lot.

Once my blood test numbers were in, we met with Dr. G who threw a curve ball. He was excited about returning from a recent conference. Apparently, there was much discussion about how MY goofy brand of leukemia should be treated. Some docs saw no need for any maintenance when the patient’s bone marrow biopsy was clear at a molecular level, which mine was. Others liked the three meds for two years. Dr. G. thought that maybe he could be a little less aggressive than originally planned.

Given my side effects—which now include itchy, scaly patches of skin on my back and arms, along with mega-fatigue and a bunch of lesser issues—he dropped two of the prescriptions! He left ATRA in the mix, which is a mega-dose of vitamin A. As planned, I will take 10 pills a day for 7 days every other week for a year. We’ll see what that brings.

I’ve written before that I always suspected I’d be hit with a health challenge in my 50s. So far, I beat breast cancer, leukemia (hand me that wood chopping block to knock on) and I’ll be 59 in January. If I can get to 60 in 2014, I’ll be good for a couple of decades at least. I know this just like I knew something would hit me in my 50s. For this reason, I’m comfortable with some form of maintenance and might even ask Dr. G to drag it out until I hit 60. They say things come in threes. Hopefully, not this time!

Read Full Post | Make a Comment ( 4 so far )

Friday, June 22, 2012

Posted on June 24, 2012. Filed under: Cancer | Tags: , , , , |

“It’s like this:

I can feel like crap and lay at home in bed,

or I can feel like crap and be out doing something

that makes me forget that I feel like crap.”

Today was a lot like yesterday. Scott came with me for treatment. Arsenic in bags on hangers. Hook me up. Unhook me. Except today I had a regular visit with the breast cancer oncologist who poked around and gave me the “all clear.” Since we had a private room, the scenarios of other patients were limited. Because it’s Friday, I’ve had about all the arsenic I could take. I went home and lay down for awhile.

Part of today’s agenda included returning a matte that I recently had cut for one of my paintings. I had sent Karen final jpgs of the works in mattes. Her Virgo love of detail noticed that one side of the matte looked smaller than the other side. I measured and sure enough, there was a 3/16th difference. Once confirmed, the difference screamed at you. So, I needed get myself together to return it and have them fix it. Since Scott had picked the work up, and noted the crabby staff, I wasn’t exactly looking forward to the exchange, but hey, it looked weird. Lucky for me, the staff person was super nice and had a guy re-cut it in five minutes. They even let me keep the old one, which I can use if I turn it sideways. No problem.

After rousting up dinner, Scott and I went for a walk. Of course, because it’s now 8 pm I’m feeling much better, and being a night owl, will probably get a second wind about 11. Tonight, Scott suggested a river walk, so we drove over to the other side of the river and a little south. There, we found a mulched path with brush trying to take over along the path. Some of the path became rather rustic and because you can barely see, and the land drops to the river, I opted for a neighborhood walk after a few blocks. We probably walked at least a mile, so even though I feel pretty energy-robbed, I’m still trudging along.

I’ve had a yearning to whip up some jewelry so when I got back, I got out the beads and knocked out four pairs of earrings in almost no time. Just the kind of relaxing activity I needed before bed.

Read Full Post | Make a Comment ( None so far )

    About

    A writer and cancer survivor chronicles her renewed dedication to art and words..

    RSS

    Subscribe Via RSS

    • Subscribe with Bloglines
    • Add your feed to Newsburst from CNET News.com
    • Subscribe in Google Reader
    • Add to My Yahoo!
    • Subscribe in NewsGator Online
    • The latest comments to all posts in RSS

    Meta

  • Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 1,050 other followers

Liked it here?
Why not try sites on the blogroll...