Wednesday, July 12, 2006

Midpoint

July 12, 2006: exactly seven months ago, on December 12, 2005, I had brain surgery and learned that I had cancer. As Lance Armstrong puts it, it was the day I "started living".

Factoids:
  • I have taken a total of 13,080 milligrams of Temodar chemotherapy, with much more to go.
  • It made me throw up once.
  • My "mange" is growing back -- hooray -- but my roots are definitely growing faster.
  • I have had 21 blood tests since January. I have another one tomorrow. (My veins seem to know when it's Thursday, and they start perking up.)
  • Only one blood test showed low white blood cell and neutrophil counts.
  • No blood tests have shown decreased red blood cells or platelets so far (knock wood).
  • My surgical scar looks great (if you can even see it), but my head is still really tender and my skull feels really bumpy where I was carved open. I still avoid sleeping on my right side as much as possible.
  • I still have jaw discomfort from the surgical incision (I rarely chew gum and I dread eating anything tall.)
  • I can count backward from 100 by sevens REALLY fast (100, 93, 86, 79, 72, 65, 58, 51, 44, 37, 30, 23, 16, 9, and 2: it took longer to type it than to say it...)
  • I have a 4.0 GPA on my monthly neuro tests. Maybe higher, since they usually tell me I got an "A+"
  • I can sight-read music better than I did before surgery, but my reading comprehension is (slightly) worse.
  • I have taken three different anti-seizure medications: Trileptal, Dilantin, and Keppra.
  • I have had 2 C-T scans and 8 MRI scans since last November. My next MRI scan is scheduled for August 10.
  • I have said the words "avocado", "tree", and "no if's, and's, or but's" in my neuro-oncologist's office about a half-dozen times each.
  • I have stuck out my tongue at some of the best doctors around -- and at their request.
  • I have forgotten where I put my keys, shoes, wedding ring, and watch more times in the past seven months than I had in the previous 38 years of my life.
  • I can still sing most of a one-hour Handel's Messiah performance and anything I ever recorded with Evening Song choir -- from memory -- and I can usually recite most of the opening paragraph of Gone With the Wind ("Scarlett O'Hara wasn't beautiful, but men seldom realized it when caught by her charms as the Tarleton twins were. In her face were too sharply blended the delicate features of her mother, a Coast aristocrat of French descent, and the heavy ones of her florid Irish father...") as well as the FDA's definition of a medical device complaint ("any written, electronic, or oral communication that alleges deficiencies related to the identity, quality, durability, reliability, safety, effectiveness, or performance of a device after it is released for distribution"). I can remember some phone numbers that I rarely call and/or haven't called in years. I also remember the address of the house I lived in when I was five years old (98 Stonegate Road, Buffalo Grove, Illinois) and the three "test words" from my last neuro exam ("tree, monkey, avocado"). But my short-term memory is sometimes frustratingly flawed. ("Dangit - did I take my medication today?")
  • I can walk a straight line on my toes or heels, even with mules on.
  • I have submitted four magazine articles for publication. One has been accepted (with modification).
  • For at least three months I went without cooking a single meal, but I ate better than ever.
  • I have had all four of my bathrooms professionally cleaned (for free) at least four times each.
  • (Too many acts of service to number)
  • I have had more than a dozen out-of-town family members and/or friends come to visit me in the past seven months.
  • I have sung five different solo or duet performances this year.
  • I have clog danced to "Duelling Banjos" with my husband more than a dozen times this year.
  • I haven't missed a day of exercise in 68 days. My previous streak lasted three years, and I am determined to live long enough to beat it.
  • This year I have watched exactly zero episodes of "American Idol" - my once-favorite show.
  • I have purchased more than a dozen books about cancer.
  • I have read less than one.
  • I have raised nearly $1000 for the American Cancer Society.
  • I have spent about $150 on Lance Armstrong "Livestrong" merchandise.
  • I received three free copies of Lance Armstrong's books: one from a cousin, and two from the cancer center.
Today is considered my "midpoint" day, because the average prognosis for this cancer is 12-14 months. It comes from the Temodar clinical study, which showed an average lifespan of 12 months for radiation-only patients vs. 14 months for radiation-and-Temodar patients.

It is a time of reflecting back on seven months' evolution from "shock and awe" to feisty fighter. Seven months ago I had no idea what chemotherapy and radiation would be like; now I feel like a seasoned veteran. I am doing a lot better than I expected at this stage. My treatment has been amazingly tolerable. I am aware that it wasn't so very long ago that the prognosis for this type of cancer was half of what it is today. Technology and prayer have easily carried me this far with no end in sight (so far - knock wood).

This is also a time to realize that -- oops -- I still haven't done everything I wanted to do while time is a-tickin'. I've done some great stuff, and I have found so much more meaning in every day that passes. I give thanks for every day of my life, and I am blessed to realize how precious life is. But I am anxious to get some things finished and tied up, especially since I find that the more prepared I am for something, the less likely it will happen. Even so, I try not to be too concerned that I have eaten up half of that 14 month timeline. As I said in a previous blog, I can think of myself as being halfway through "the rest of my life", or I can think of myself as being halfway toward beating my prognosis.

And finally, I must report that these past seven months have taught and given me much more than I have time or space to list. Suffice it to say what a friend (and fellow cancer survivor) said to me shortly after my diagnosis: "Cancer gives more than it takes."

12 comments:

Anonymous said...

You are so awesome. You have no idea how happy this entry made me for you. You are a fighter and a survivor! God is great!

Mandi

Proud Daughter of Eve said...

Ganbatte ne!

(Sorry the world that fits what I want to say is Japanese... it could be translated as "keep fighting!" and "good luck!")

Claudia said...

"Cancer gives more than it takes." That is an inspiring thought. Thank you for sharing your journey. You remain in my prayers. Claudia

Anonymous said...

I have a friend who has the same diagnosis as you and is into his 4th year now. Seven mos. could very well NOT be the midpoint, and that is what I am praying for, for you.

Selwyn said...

Nothing I can say truly expresses my admiration for you! Well done, and you are always in my prayers.

bryny said...

Congradulations on the milestone, Each one of them is precious. I hope to congradulate you again at 14 months and then at year anniversaries on out.....

-robert eskridge

Jilane Richardson said...

I have followed your blog faithfully since my good friend and sis-in-law, Karen Richardson, sent me your link in January. You are so strong and good, and faithful. And yet you are honest and admit to having bad days. When life really gets us down, it is almost like, "Time to visit Krista," and things take a brighter aspect.

You often talk of all the blessings you have received from the Lord. I have to pass on the blessings you are giving back. As I said, Karen sent me your link the first part of January, if I remember right. She said, "I thought you would be interested in this. I just had a feeling I needed to send it to you." I went back and read your blog from the beginning. A great uplifter. I live in Syracuse, Utah, and today a friend of mine from my ward called me. She is leaving three of her four children home with her husband tomorrow to fly out to Dallas to be with her twin sister. They just diagnosed her this morning with two different types of cancer, cancer of the spine and cancer of the brain. They were going to biopsy today to see if her brain cancer is the curable kind or not. My friend, obviously, was distraught. She said the doctor said she had to remain positive for her sister. She had no idea how she was going to do it. I have your page bookmarked so haven't even looked at your web address since the first day. I rattled off your address for her. I told her to take some time to look at it and she might get some ideas as to how to be positive.

I think that the Lord was watching out for another of His precious children. You have been writing and telling of your times and your love for the Father and His love for you. Karen was prompted to send it to me. At the time, neither of us knew that I would need it later, and not for myself. The Lord then put your address into my mind to help another. Thank you for touching me, and my dear friend and her family.

Jilane Richardson
jilane richardson at hotmail dot com (all squeezed together)

Anonymous said...

I always liked the "glass half full" scenario.

You continue to amaze and inspire me. I miss you!

I can't wait to celebrate the 14 month mark with you and every year after that. Remember, we said we would be laughing years down the road when we reminisced about the old days, when Krista got brain cancer?

Forever in my prayers!

Love ya!

Jeri

bryny said...

"the glass is half full" can also be viewed as having twice as much glass as you need....

I'm not sure what that means but I like having more ways of looking at things....

Rosa White said...

Hey Krista,
You continue to be in my prayers! I cannot even begin to tell you of the high esteem I hold you in. Although we have never met in person I consider you one of my dearest friends and an angel sent to me by a loving Heavenly Father. You have ministered to me during my trial of IF and have been my rock during some of the most devasting times of my life. For that, I thank you forever.

I came across this article (which you may or may not have already seen). I hope you are not offended by me offering it to you. Please know it is done with love and not in any way to question those medical decisions you have already made. I am pulling for you for many reasons, but mostly because this earth cannot afford to lose your loveliness.

Love,
Rosa
Reno, NV

Rosa White said...

from NewsMax Health:

Is Immunotherapy the Cure for Cancer?
Immunotherapy – stimulating the body’s immune system to fight cancer by attacking malignant cells – could be the next big breakthrough in cancer treatment.
About 140 immunotherapy trials to treat numerous types of cancer from breast, colon, lung, and prostate to brain and lymphoma are underway throughout the country. Many are close to applying for FDA approval. In the forefront is MD Anderson’s Cancer Center in Texas, which opened a state-of-the-art immunology research center three years ago.
One of Anderson’s innovative therapies is keeping one doctor alive and healthy almost 15 months after being diagnosed with a deadly brain cancer called glioblastoma, which is, as it happens, the very cancer the doctor himself treats.
Another doctor, Eugene Overton, a retired surgeon, is receiving an injection once every three weeks to aid his fight against melanoma. “I figured chemotherapy would, at most, just control the cancer,” said Overton, who chose the experimental therapy over conventional chemotherapy. “But if my body could be trained to recognize wandering cancers, that might be a cure.”
One big advantage to immunotherapy is that it is non-toxic and doesn’t cause the debilitating side effects of radiation and chemotherapy.
Overton says that not only has his melanoma not recurred, the immunotherapy didn’t cause any uncomfortable side effects.
Using immunotherapy to fight cancer isn’t new.
Back in 1891 pioneering doctor William Coley vaccinated cancer patients with streptococcal cultures, and some even went into remission. But other attempts through the years didn’t produce results. The advent of effective surgery, radiation, and chemotherapy put immunotherapy on the back burner – if not in the scrap heap – of research for many years.
The main problem in treating cancer is that the body doesn’t recognize cancer cells as enemies in the same way it recognizes germs. But now, through the advent of genomics, researchers have found naturally occurring compounds they can create in the laboratory that boost and help direct the immune system.
“It’s like suddenly having the cancer’s postal address and being able to activate the immune system to deliver its blow there,” said Dr. Jeff Molldrem of MD Anderson.
Early results have been encouraging.
Patients in an Anderson trial whose myeloid leukemia had resisted all other therapies had complete responses.
Another Anderson trial for victims of glioblastoma significantly extended the lives of participants. A trial at Mary Crowley Medical Research Center in Dallas extended for years the lives of some patients stricken with a type of lung cancer that normally kills in four to six months.
Researchers hope that they will eventually use immunotherapy not just to fight cancers but to prevent them.
Some current vaccines actually prevent cancer, notably the recently FDA approved vaccine for cervical cancer. But since most cancers aren’t caused by viruses but by genetic predispositions, researchers are looking for ways to trigger the immune system to fight cancers people are genetically programmed to develop.
Still, it’s too early to pop the champagne corks to toast the demise of cancer.
The field is promising,” said Dr. Steven Rosenberg with the National Cancer Institute, “but there’s always danger in making claims before the real data’s in.”

Colette said...

Krista,

Les and Lorie send me your blog. My first reaction when Lorie told me was shock and I didn't want to believe it. I only read your last entry and I think you are an amazing person and I am very proud to be able to say I know Krista. You made me understand that battling & fighting for what you believe in is always the better option.Thank you for that. You have a great looking family, keep fighting and maybe we will meet one day again.
I moved with the kids to Luxembourg two years ago, I am back visiting this month. My email address is colette_weber@yahoo.com. You tought me another thing, you never know what tomorrow will bring, so let's live life today to it's full extend and let's stay in touch with friends. Keep fighting..

Colette (from Epic if you remember me)