Guilt and Paranoia

Last week, I was reading the editorial in the latest issue of Touched By Cancer. Mike McDonald wrote about being cancer-free 14 years. He said that when his oncologist told him to go live a normal life, he didn't mention that paranoia would be part of the new normal. Most recently, he worried about a mole that became sore and irritated. As it turned out, the irritation was caused by seatbelt friction during a long drive on vacation. The mole is benign.

I haven't had cancer very long, but I can relate!  Some examples -

• Oh no, that lymph node that was swollen during tax season is swollen again. What does that mean?
• Oh no, a new lymph node is swollen. What if it's an indication of another type of cancer? After all, there are people who get diagnosed with more than one kind of cancer at the same time.
• Oh look, my ankles are swollen. Are my blood counts out of whack again?
• These jeans are loose today; is it because I ate a salad yesterday or because I'm anemic again?
• And then there's the ever present knowledge that some patients stop responding to the medication after a time. It's like a hammer hanging over my head, waiting to fall. 

I don't dwell on all the things that could go wrong. Today's trouble is enough for today.  But those things sometimes run through my mind when I'm lying in bed at night or driving by myself.

I think I also have a form of survivor's guilt. Most people with cancer have to have chemo that makes them sick and bald; I had 5 days of very mild chemo and I've had only minimal side effects from the medicine I'm on now.  I have friends with chronic illnesses who have chronic pain; I didn't even realize I was sick until I was diagnosed. I had a lot of achiness before I was diagnosed, but very little actual pain. I don't want to have pain or nausea or baldness or other symptoms, but I feel these weird emotions about not having them.

Edited three days later:

I haven't posted a link to this post on facebook yet. I wrote it out, but verbalizing these emotions make me feel as if I'm calling doom down on myself. If I admit that I feel guilty about having such mild symptoms of a very serious illness, maybe my symptoms will get worse or I'll stop responding to my medication. Then on Thursday, I began feeling worse. I couldn't concentrate at work, I got a headache, and I became nauseous. Friday morning, I felt better, but by afternoon, I was feeling tired again. Not a normal kind of tired, but the way I felt before I was diagnosed.  I called the doctor's office and got my next appointment moved from Friday to Tuesday. I worried that my worst fears were coming to pass and my blood counts are out of whack again.

Today is Saturday, and I'm feeling normal again (and quite relieved!). I took Katie to her dance class and I've done some laundry, and I don't feel exhausted. Over time, I'm sure I'll figure out that I will have good days and bad days, and it doesn't mean the leukemia's getting worse. I'm sure I'll have some fluctuations in my blood counts and pcr, but every fluctuation won't mean that the cancer is going to spiral out of control. But for now, this is all new, and I don't know what is within the bounds of "normal" and what things I should be concerned about.

Osteoporosis Update

I finally rescheduled my mammogram and bone density test that I had to cancel on July 5. The mammogram results were normal.  My bone density actually improved in my hips (YAY!), but is worse in my lower spine (DARN)!  I had stopped taking calcium supplements for awhile because it was making my stomach feel yucky, but I started taking them a few weeks ago.  I also need to get serious about exercise.  I bought a groupon for a one-month membership to the Rex Wellness Center and I have a coupon for a free week at Curves. I will try them both, and then decide whether to join one of them or try some other gyms. There are peer-reviewed studies showing that acupuncture works to improve osteoporosis, and my oldest sister does that in addition to walking almost daily.  My sister's insurance company covers acupuncture, so I was hopeful that it would be covered under my policy, but it is not.  I hope it's not cost prohibitive, because I want to do acupuncture rather than medication.  The latest research on osteo meds show that bone density increases, but there is not a correlating decrease in breaks. Even worse, one of the side effects of long term use is deterioration of the jaw bone. So even if my endocrinologist tells me it's time to start meds, I disagree. I am going to try to improve my numbers with exercise and acupuncture first.  There is an integrative medical facility down the street from my office in Raleigh, so I couldn't ask for a more convenient location for acupuncture.

Thank you to my former co-workers!

Varanko & Black, the firm I worked for when I lived in Baltimore, held a Denim Day at work and raised $245 for leukemia research! Woo-hoo!

The Man of the Hour

Rachel wrote this poem as part of her personal hero project for English. :-)

Verse 1
Parents dying, children crying, no real explanation.
Until a man came along with a true exclamation.
Disease winning, worlds were spinning, many complications.
A man was born passionate for these very situations.

Verse 2
He oversaw, watched it all: the Human Genome Project.
The man learned much and guided to the desired object.
Mapped DNA, led the new way, to fighting the beast cancer.
Progressively lead his team to find the great answer.

Chorus
Francis Collins, the man of the hour,
Showed to have scientific power.
He led the long way to saving lives.
Held as a hero in many eyes,
For saving the husbands and the wives.

Verse 3
Raising cattle the daily battle deep down in the Shenandoah Valley.
The genius actions as a child no one e'er could tally.
Life was simple, smiles with dimples, he left for college at only sixteen.
Left his dream of chemistry to discover genetics mean.

Chorus

Verse 4
Many mothers will see bothers, appreciation to the Francis Collins
Who took his time to devote to life of another's kin.
A true hero, more than we know, for saving my mother.
Francis Collins will be the man of my hour forever.

Doctor's Orders: Live Your Life

I had a doctor appointment on Tuesday, nearly six weeks post-diagnosis. My white blood cell count was 3.9 and the counts related to red blood cells are all holding steady.  My doctor is very happy with how well I'm responding to Tasigna, so I don't have to go back for a month. Even better, he told me other than planning for my appointments with him and taking Tasigna twice a day on an empty stomach, I can just live my life. So, on Monday, I'm going to start working normal hours and in the office.

My sister Juanita and her boyfriend were here last weekend. On Friday, we went by my office to drop off and pick up files, then to the mall where Katie got her ears pierced, then to the grocery store. By the time we got home, I was very tired, but it was a good tired. A normal kind of tired.

This evening, Katie and I decided to enjoy the cooler weather and go for a walk. There is a slight hill on our street, and at least a year, when I went for a walk, my legs burned and I was short of breath by the time I got up the hill.  All this time I've been telling myself I need to exercise more because I'm so out of shape, and yet, I couldn't build any stamina even when I did exercise. Tonight, my legs didn't burn and I didn't get short of breath. :-)

The Living Room

I want to give a big shout-out to The Living Room, the Sunday School class that Roger teaches at Faith Baptist Church. They provided wonderful meals to us during the past month! They have made us feel very loved and appreciated, and we appreciate all that they have done for us!  We are blessed to have a great church and wonderful friends.